Sjogrens World Forums

You've been with me through the sage of my dad having 8 or 9 surgeries in the past year and a half.  Now it's mom in severe stomach pain, refusing to go to the ER.  She was supposed to have an ultrasound today because her blood tests are showing that something is going on with her kidneys.  My dad called her doctor and talked to the nurse and they want her to go to the ER.  She threw a fit and I told her to shut up that she was going.  She had a bout of severe stomach pain a month ago.  She likes to ignore everyting, hates going to the doctor.  This is the same woman who does not believe I have Sjogren's.  She's back showering now and when my dad finishes lunch, he will take her in. 

((Lighthouse)) - parents can be so stubborn, can't they?   ;)  :D 

I've never had a kidney stone, but I know some people who have, and they say it is very, very painful.  Wonder if your Mom might have a kidney stone?

Hopefully, your Mother will at least listen to your Dad and quit being so stubborn and get to the ER.  I'm guessing since you mentioned she is showering, that she will go.

Hoping they get some answers for your Mom today.

Hang in there, Lighthouse.  Don't forget to breathe.

Hugs,
Bucky

Thanks for updating us, Lighthouse.  It's nice to have a place to vent, isn't it?

I hope for everyone's sake that you are able to get mom to the ER, and have this sorted out.  Take care of yourself.  ;)

Bucky,

You made me laugh!  That's exactly the word I used this morning to describe her to my dad "stubborn."

Carebear,

Yes, it is nice to have a place to vent.

Mom has been at the ER for two hours now.  Dad found a way to prop up your leg by moving over a table.  He came back home an hour ago and will head back at 3:00.  The nurse told him on the phone that what they are worried about is some kind of obstruction and that she will probably have to have a CAT Scan or maybe an x-ray to get to the bottom of whatever it is.  I also had considered a kidney stone.  Dad figures she will be at least spending the night.  He said it was very crowded there.

Just talked with mom.  They gave her a pain pill and she seemed to be a bit more cheerful. 

They are going to do a CAt Scan but because she is allergic to the CAT Scan dye they are going to have to do it differently which she said would take a long time.  She had blood in her urine.  The doctor thinks it could be maybe either a kidney stone, a kidney infection or something lke diverticulitis.  She asked him if she could come home tonight and he said she might depending on what they find. 

Hi Lighthouse,

I'm glad to hear the doctors are taking care of your mom.  Hope you are looking after yourself as well.

My dad would get pretty ornery when he was sick too, so I can completely relate. ::)

Lighthouse

My thoughts and prayers are with you and your mum and dad.

Kathyx

My dad stayed with mom until midnight.  They did not have the results of the ultrasound but mom said the technician said that she would probably have to have surgery.  I am going to go up with dad to visit her at ten this morning and hopefully we will have more answers then.  She is in a lot of pain and threw up after the CAT Scan from drinking the liquid but at least they are treating her pain.  They did tell her that she has a blockage on one of her kidneys, so whether it is a tumor, a cyst, stone or cancer, don't know.  Will post more later. 

We had frozen pizza for dinner last night.  Dad is on his last pair of clean underwear, so I will be firing up the washer.  I was up all day yesterday (no naps).  Wil just have to see how things go. 

Mom has a mass in her lower pelvis area that they think might be pushing on her kidneys and uretha.  It could or could not be cancerous.  But since she had cervical cancer back in 98 and they called in her gyno along with a urologist, in my opinion, it doesn't look good.  The nurse also said that there are spots in several lymph nodes that they want to examine also.  Dad claims he didn't hear the nurse say that but she did.  Another person living in denail.  My thoughts are that the cervical cancer is back and has spread and if it is it is probably stage four. 

In the meeantime the urologist and the gyno have to decide what to do and who is going to do it.  The biopsy of the mass would be non invasive which is good.  They were talking about maybe putting a stent into her kidney to stop it from blocking up.  The urologist sitll hasn't been in to see mom.  He was busy all day in his mobile truck outside breaking up kidney stones by shooting them with some kind of gun.  They were sure he'd be in before the day was over.

So, let's hope that the mass is benign and that they can give her some relief.  She is still in a lot of pain and is continuing with the morphine.

Dearest Lighthouse,

I'm so sorry to hear about your mom's possible prognosis.  I'm glad you are there for both your parents.  Take care of yourself.

Mom talked with the urologist las night.  She really liked him, said he was too funny!  He is going to put a stent in her kidney late this afternoon which will take five to ten minutes to do.  She asked him if there were any side effects from that and he said you know the commercial where they say I've gotta go, gotta go right now, well that would be her but they have medication for that so it wouldn't be a problem. 

Someone else is going to handle the mass, I am assuming they mean the gyno.  Hopefully the stent will get rid of a lot of her pain.  But if the mass is pusing on her kidney, I don't know.  Will have to wait and see.

They put in the kidney stent last night.  Right afterwards, mom felt no pain and was hungry.  She hasn't wanted to eat in quite some time.  They still have to do a biopsy and some other tests but it looks as if she will be coming home today.

Dad was all excited about how good she was last night and I nicely but clearly pointed out that with this stent, according to the Internet, she will not be able to mop, vacum, no heavy lifting for twelve weeks.  She won't be able to care for the house, I can't and I didn't mention him but he is no shape to do it either and that something has to be done.  I would leave it up to them to decide.  But a 7,000 square foot house is too much!  He said we would cross that bridge when we come to it!  Yeah, right, the time is right now.

Mom has been yelling and screaming about doing all the work now for a year and the stress level has been off the roof.  I've reached my limit.  So we are only cordially speaking this morning.  I think I made him mad.  Well too bad.  Mom has taken care of him his entire life - breakfast, lunch, dinner, laundry, housecleaning etc.  He is like a two year old.  

Eeeeek Lighthouse!

You are staying very calm and coherent.   And understanding.

Both of your parents are approaching the end of their lives, and things are turning upside down. 

Stubborn doesn't begin to describe what both of them are now. 

Angry, frightened, in denial, and unable to cope with life in the ways that have worked so well for years and years.

No WONDER your mother didn't want to deal with abdominal pain, she 'survived' the cervical cancer 13 years ago, and she didn't want to think about it again.

If you mother had radiation treatment for that cancer, she could now have one of the cancers caused by the radiation treatment that saved her then.

I just lost my dearest friend to that very outcome.  She had 20 great years, or so, but finally the cancer, that resulted from the radiation that saved her 20 years ago, appeared and had no cure.

It sounds like at the very least your parents need household help at this point, and perhaps home nursing care as well.

I can't imagine keeping up a 7000 sf house, and I'm relatively healthy at this point.   And my husband  hasn't had 8-9 surgeries in the past year and a half!  (eeeeeek).

I hope you have help with this huge task of helping your parents through the 'valley of the shadow of death'.   

We're all here for you.   

Hugs

Elaine

Mom had a radical hysterectomy in 98.  Her surgeon was a gynecological oncologist.  Her current gyno says that he did a wonderful job in getting rid of everyting.  That is why she doesn't think this tumor is cancerous but we still need to do the biopsy to make sure.  If it is cancer they will do radiation.  This is what we know at this point.  The hospital was going to have her call dad at home so we can learn more.  Mom's new GP is running the show and dad hopes to talk with him this afternoon.

At least dad cancelled his appointment with the vascular surgeons.  He was going to see what they could do about his numb legs.  The will probably want to do some kind of stent or by pass surgery.  Here we go with surgery #10.  Not to mention all of the dental implants he has had done.

I don't know whether to laugh or cry.  Dad met the urologist today and asked him about the stent and what she could or could not do like sweeping etc.  The doc first said, well for a couple of days she won't feel lke doing anything .... don't you guys have a maid?  My dad, no.  Dad says that he's better now and he could do the sweeping.  I practically bit a hole the size of Texas in my tongue.  He does nothing but read, watch golf and go and chip balls at the golf course.  In the past he has done some sweeping.  Wanted to ask him who was going to clean all five toilets and dust and sweep all 17 rooms.  I just said to him that she's been screaming and yelling for a year that she can't do everything and he said that he was well aware of that.  As I suspected nothing is going to be done about this!  Urg!!!  I'm doing my best, but my body is shutting down which I'm trying to hide from everybody.  Neuropathy pain is about intolerable.  Wonder what they will do when I end up in the hospital, probably just right it off as to my having the vapros or something.  LOL!

Lighthouse,

Keeping your mom, you, and dad in my thoughts. I hope your mom gets to the bottom of all of this as it sounds like she may have multiple things going on all at once!

Don't forget to take care of yourself in all of this...

Keep us updated...

Mom came home Saturday evening.  She's been in terrible pain without the morphine.  Can't take any pain killers because they would thin the blood.  Biopsy will be done tomorrow.  Kidney stent is temporary. 

Per usual she is in ignore mode, doesn't want to talk abot it.  I told her I put dad on notice about getting help around here.  She said he had asked her when she wanted him to start on it.  Why can't he do some iniciative and do it on his own.  She is back to doing everything, taking care of him.  Her motto is soldier on.

Oh, lighthouse,

This is my 'wisdom' on 'helping' older people.

"Let 'em whirl" as best you can.

Even when it may 'shorten their life" or "be bad for them".

Change is hard at any age, and change forced on you at an advanced age can be horrible, counter productive and useless.

I know it's hard to see your Mom overdo, and your Dad be demanding.

But this may be what they 'want' , what they are used to.

When my in-laws were so disabled they had to be in a nursing home, my father-in-law chose a place
near their home.

EVERYONE in the huge family (11 kids) had different ideas about where they should be located.

BUT my father-in-law was perfectly competent to make his own decisions, and that had to be respected.

At least I think so.

The same thing applied to his eating sweets when he shouldn't, etc.

It is so easy to patronize and infantilize older people when you 'know what's best for them'.

And even easier when YOU have to bear the brunt of the penalties for their choices, as the 'responsible adult" picking up the pieces at the emergency room and with the financial and health disasters that may ensue from poor choices.

And yet, I say "try to let them make decisions and do those things that they choose" without too much interference and judgement.

Remember, one day your kids will be patronizing you, trust me.   I'm already there and it is infuriating!!!

At least I've tried to 'model' the appropriate way to treat older people, even if it hasn't 'taken' all that well, it seems.

Good luck lighthouse, this isn't a bit easy.

Hugs

Elaine

is it only your parents that live ina house that HUGe?

Carolina:

Thank you so much for your well thoughtout response.

The big problem in our case is that I live with them.  Am tired and stressed out from listening to a year of fighting between the two of them - mom wants to downsize, dad does not - blah, blah, blah!  By the way she's screaming at everyone and it continues more now after her hospital visit.  This has affected my health big time.  But remember according to mom there is nothing wrong with me and she doesn't want to hear about Sjogren's.  So I've been holdig it all in about my health since last October.  They don't want to hear about my health problems and I don't want to hear about theirs.

I guess I will have to suck it up and continue to suffer because someone around here needs to help out mom and it certainly isn't going to be dad.  He was born selfish and will die selfish.

One sibling lives fat, dumb and happy out of state.  When we asked him to move to the area a year ago to help out with good old dad his response was a flat out refusal.  My other sibling is a deadbeat who likes to smoke marijuana all day.  We haven't even spoken to her in ten years.  Wish I could live fat, dumb and happy in another state.

One and only,

Yes, me and my parents live in the house along with ouur cat.

.

ACK, Dear lighthouse.

You're up for sainthood in my book.

My husband and I squabble a lot and always have, but the kids go berserk when they hear it.

(of course THEY squabble, but......)

And of COURSE you can let it all out here.  Vent away dearest Lighthouse.  That's what we're here for.

I was just suggesting that trying to change people is usually not very successful.

But, well you're living with it day to day.

sigh

Earplugs?

Hmmm I guess you can't flat out refuse like sibling #1.  What about the answer of #2, a bit of 'smoke'?

Yeah, not practical, I suppose.

well, just keep us posted, and let it all out here............

really, I'm not judging you, I was just hoping to help you let them whirl.

But they're whirling all over you.....that's extra hard.

Hugs

Elaine

Carolina

No problem, I didn't think you were judging me.  I left a husband after three years of marriage after I wised up that he was not going to change and I wasn't going to change him.  One of the best decisions I ever made. 

I do have a white noise machine for bedtime that I do put on when I go to bed early and sometimes I can still hear them.  I also have a pair of headset earphones that you wear on your head when you are using noisy equipment like a blower.  Earplugs would work too.

Mom did not have a biopsy.  Next Thursday she will have a colonoscopy and a PET Scan to check for cancer.  If those come up negative, I guess they will just watch the mass in her pelvis to see what turns up.

Hi Lighthouse

I hope things are settling down a bit for you. You are an amazing woman, dealing with your own problems and those of your parents. I will keep you all in my prayers.

How is your mum doing now?

Kathyx

What a nightmare!  Mom's colonoscopy was this afternoon.  Dad called, they transported her from the surgery center to the ER via ambulance.  Apparently when they do the procedure they pump the area full of air.  When they got in with the camera they found a blockage there, afterwards, they tried to release the air and they couldn't because of the blockage.  She was in awful pain.  Gastro has ordered a CAT Scan just to make sure that he didn't perforate her colon.  He doesn't think the tumor is cancerous but he thinks but is not sure, that it has grown from her pelvis into her colon.  He thinks she will need surgery.  So, she will probably end up spending the night in the hospital.  He thinks this blockage in the colon has been causing her all of the pain.

Here is what we know so far.  The biopsy that the gastro did will take two or three days to be read.  The CAT Scan turned out normal so her colon is fine, not perforated.  Last night gastro said that he thinks it is cancer, probably a reoccurence of the cervical cancer and things do not look good.  She will definitely need surgery to get the tumor removed from her colon and to get her kidney unblocked.  That will give her pain relief.  She is back on morphine. 

Dear Lighthouse,

Thinking of you.   This is an exhausting and emotional time.  Do you get any relief?   You need real time hugs and rest and support.

Everyone is scared and hurting and angry, I imagine.   And being mired i the medical system, while necessary, is overwhelming at the best of times.

Just hang in there.

Hugs

Elaine

Dear Lighthouse,

You're going through such a difficult time.  I hope you are able to find some quiet time for yourself every now and then amidst all this.  I continue to think about you, and hope the the very best outcome for you and your parents.

Mom had emergency surgery during the night for colon cancer.  She has a 15 cm - 6 inch tumor in her colon.  The doctors were afraid that with no food or water, the gas and the weight of the tumor would cause the colon to perforate.  The surgeon said that they were right on the borderline of that happening.  She could not have made it another day.  They did not remove the tumor they just bypassed it by installing one of those bags - can't think of the medical term for the bags.  This should relieve her pain.  The bag might be temporary depending on her treatment. 

She will have to undergo five and a half weeks of radiation and six weeks of chemo.  Hopefully this will shrink the tumor.  Oncologist says that there is a 60% survival rate. The tumor had grown out of the colon and grown into the tube that attaches the kidney and bladder.  I don't know why they are calling it colon cancer because it is a reoccurence of her cervical cancer.  Maybe one of fthe nurses could explain this.  All of the pain she was having was coming from the build up of gas.

Her throat hurts because of the anesthia and she can't talk and does not want any visitors.

Dearest Lighthouse,

Blessings and all love sent to you and your family.

This is a long and difficult time ahead for all of you.

Hugs.

Elaine

Lighthouse - thank you for sending us an update on your mom's situation.  You must be overwhelmed with the stress of taking care of everyone and worrying so much. 

My heart goes out to you all.

Chickpea

Oh Lighthouse....so much going on with you and your family. Thanks for the update on your mom and sending you, her, and your dad lots of positive thoughts and prayers.

Please keep us posted and try to take some time for you as well...I know it may be difficult at this time but it is still essential for your own well being and health.

Sending you lots of big virtual hugs...(http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php)

Dad and I were having a meeting with a neighbor and his in home nurse and dad told me to quit interrupting him.  So then he tried to cover it by asking if I had anything to add and I said no that he and her (meaning mom) could handle it and walked out of the room crying.  I bet he is going to be pissed that I embarassed him in front of his friends. Too bad.  I'm pissed too. 

Clearer heads prevail now.  Will try to post more tomorrow.  I cried for several hours this afternoon.  Guess it's a blessing that I can still cry tears!

Dear Lighthouse,

I'm glad to hear you had a good cry.  After all you've been through with your folks, it was probably overdue. 

I continue to keep you in my thoughts, and hope you are caring for yourself.

Dear Lighthouse,

Leaving an abusive situation is often very hard to do, and sometimes the best possible action to take.

Get away, get the feelings out, and stop the merry-go-round when it's out of control.

Thinking of you.

Hugs

Elaine

Dad and I interviewed and hired a maid who is also a nurse.  She will do anything, cleaning, cooking, caregiving etc.  She's worked for other people in the area and came with recommendations from people we know.

It will be interesting to see mom's reaction to this.  Dad has mentioned to her about getting a maid in the past and her reaction has been - I don't want anyone in my home, acording to everyone she's talked to they are disatisfied with the service they provide and you have to watch them all the time so they don't take anything.  She always complains about dad's sweeping and I can tell she thinks I'm too slow in the kitchen.  I doubt this gal will do the cooking. 

Dad's solution to the cooking is that we eat out and he said he's told mom that.  But I told him that for me and mom too our pain levels are too high to get cleaned up and sit in a restaurant for two hours.  So whether he'll force her back into cooking I don't know. 

I think he is angry because his life as he has known it is over.  Cooked for and taken care of 24/7.  It should have been over a long time ago, if he really cared about her he would have done something about it earlier.  But as Carolina says let them whirl.  I'm trying my best to do that. 

Ahh Lighthouse:

You can get lovely meals delivered to the house, NOT take out.   I think something called Schwan's is one of the services.

http://www.schwans.com/?kwid=searchgg01077209-pcrid-5519985017&dmg=3320

The point is to eat and to be comfortable.

Sigh.

HUGS

Elaine

Sounds like the perfect solution, Lighthouse.  ;D  A nurse who cleans and cooks...what a great combination.

You can't control how your mom or dad will react.  But I say "You did good, girl!"  ;)

Well, the seas parted, and my dad after asking what I thought about it, has decided to allow the nurses to do the cooking!

Mom is still in the hospital, she developed a gas blockage.  The doctor gave her two options - get up and walk every two hours or have a tube stuck down here throat to get rid of it.  Luckily the tube wasn't necessary.  She is still on the pain pump and the oxygen.  She may come home in a couple of days or some time next week.

Dad is going to give me a break and go on his own tonight.  I've been with the maid/nurse all day.  She cleaned the entire house and it looks great.  Dad is going to break it to her tonight that he has hired a maid - nurse - cook.  I wonder how that will go over. 

Oh, we ALL need a nurse who cleans and cooks.

:D

Hugs

Elaine

Well I think I spoke too soon on the cooking.  Mom reluctantly agreed on the maid part but I don't think she wants the nurses and who knows if dad even mentioned the cooking.

I can tell that he is getting depressed. Not wanting to do anything.  I asked him to get a couple of bed pads yesterday.  What does he come back with one bed pad and a chair pad.  Says he wanted to make sure about the size.  Well, she needs one for her bed and one for the couch.  Mom shows him a product called Zorb that is a spray that will eleiminate orders without producting an odor of its own.  Well, I might look for it today, we'll just see what happens.  Mom is supposed to come home tomorrow.

The nurse said that she would take me to the grocery store.  I've started a list but no one is giving me any direction on this.  I think dad thinks mom will come home and start cooking again.

We had take out pizza last night from Dominos.  Dad wanted a salad.  I said don't you remember I spent Thursday cleaning out the refrigerator, there is nothing there.  What about the leftover salad.  I said that's been there four or five days you can't eat that.  Well then you'll have to throw it out.  Yes, dad, I will do that.  Then he was unhappy because the pizza wasn't hot. 

A couple of days ago he mentioned that the shirt he was wearing was dirty. Well I don't know how to wash his golf shirts.  Then he says well I don't think it matters, I've got plenty of shirts.  This is something mom complained about for years, him brings out one thing and then she's have to do laundry.

He just wants her to come home and things to go back to the way they were.  The nurse told me that people who can not afford home care for a person in my mother's condition put them in a nursing home because they couldn't care for them.  I think mom thinks she can do it.  Dad wants to play it day by day and if she can't we'll deal with it later.

By the way, flat out refusal sibling was angry that we didn't notify him about the first hospital visit.  On this second deal, we did notify him and because it's "mom" he wants to come and help.  No way.  All he wants to do is come to play golf, talk 24/7 and be entertained.  Neither mom or dad can play golf and we are in no shape for entertaining.  We begged him a year ago to move to the area not come for a visit.

And guess who crawled out of the woodwork.  Blowing smoke sibling called a couple of weeks ago.  Dad told her that mom was in too much pain to talk with her and that she would call her back.  She only calls when she wants money!  It's sad to be that cynical on our part but it's true.  Then a cousin of mine calls and has the nerve to ask for money.  His wife's grandmother had promised them a grand windfall when she died so they had been spending like crazy for ten years.  Grandma dies her father was executor and cut them out of the will and now he is worried about his credit rating and his wife had to go back to work. Dad told them to do what everyone else does file for bankruptcy. 

Dear Lighthouse,

You are in the middle of everything!   Arghhhhhhhhhhhhhhhhhhhh..........

I recognize all those family types.   My family of origin was tiny, but I had one sister that managed to cover most of the types, all by herself!

How sad for your cousin who lived so much of life in expectation of money that didn't arrive.   Expectations of that kind can warp people so badly. 

Reading all your posts, Lighthouse, about making decisions and pleasing your father............

I think you have to make decisions and say take it or leave it.   Or say nothing, just do what makes the most sense to you and let the chips fall where they may.

I think your father is just venting right and left, even about things he doesn't really care about.  He and your mother are facing 'the valley of the shadow of death', it is scary and not very pretty.

Buy what YOU think is necessary, HIRE whom you think is needed, do your best and let the rest go.

HUGS and love

Elaine

Mom is tentatively scheduled to come home this afternoon.  The nurse will be here.  It is not going to be pretty.  Mom does not want the nurse.  I'm worn out from doing the laundry, washing dishes and taking care of dad.  He is out getting a haircut while I am waitng for the plumber to come and fix a toilet.  At least there will be no more running back and forth to the hospital.  I went because dad wanted me too.  I can feel my body shutting down but I will just have to deal with it.  Think I need three days of bedrest.

Lighthouse, you must get that rest too! As soon as your mum is installed in her bedroom, and familiar with the nurse, I thik it's your turn to rest. Back off, and leave them to it. They will have to get used to one another sooner or later and you need time to recover from these last few weeks, and to rebuild your own resources.

Good luck!

Kathyx

My dearest friends, mom rejected the nurse.  The nurse told me that she has a right to do that.  But at least the nurse has the foot in the door by coming and doing the house cleaning.  I said to the nurse, if her ostomy bag leaks or breaks during the night or she has an accident, it will just have to happen.  Neither dad or I is well enough to stay up with her.  The nurse said sometimes that is what needs to happen before a person will accept help.  So I'm going to bed, have a good cry, turn on my white noise machine and try to get a good nights sleep!  The nurse is coming tomorrow to change the surgery dressing since the home health care nurse couldn't come and she is coming on Friday to take me to a doctor's appointment and do some cleaning.

I won't even get into the fight mom and I had when she got home.  Guess I will be doing the cooking and the care taking.  Nothing I can do about it but keep my lips zipped. 

OK, your Mom has the right to reject the nurse.

YOU have the right to check into a motel, shut off the phones and sleep.  For two or three days.

To reject BEING a nurse.

I know, easier said than done.

The place where we are in life now, is worrying about BECOMING like your Mom and Dad, at least physically.

At least we have Long Term Care Insurance, and (I hope) we have enough sense to hire what's needed when the time comes.

But I surely understand not wanting a 'stranger' to care for you, especially since they are often from such different circumstances and life experiences.   Just when you're feeling so vulnerable, especially.

My support and good wishes to you Lighthouse.  THANKS for keeping us posted. 

I'd hate to see you wind up in the hospital yourself, to get the rest you need.

Put yourself first for a few days, if at all possible.

Hugs

Elaine

Mom's ostomy bag leaked during the night.  Boy, did she want the nurse there.  Nurse was scheduled to come at ten and in fact was late.  There will be a home health care nurse coming every day to change her surgerical site dressing and to change her bag if needed.  She will come, do her work and leave. 

Mom is afraid that she will have to entertain the nurse while she is there and she is not up to that.  She is still resisting having someone here all the time.

Oh yes, something funny happened this morning, actually it wasn't really funny.  I was cleaning out the litterboxes bending down supporting myself by my knees and calves and I fell down on my butt.  Mom happened to walk by and saw me sitting there and she said what are you doing.  I said I'm cleaning out the boxes and I fell on my butt.  I didn't tell her this but my legs just gave out.  Yesterday I almost fell on the landing of the staircase because my foot shot out and I lost my balance.  I also almost tripped over my feet in the kitchen.  Think the neuropathy is kicking up.  And I don't need a cane, right!

Dear Lighthouse,

The neuropathy is the hardest part really........the part that affects what I do and how much I move around.

hang in there.

Hugs

Elaine

I have taken myself way out of the picture so to speak.  And I've been really surprised, dad has been great.

But mom is not handling it well.  Angry and I think going into a deep depression.  Doesn't want to talk about it, surprise, suprise.  But we are really trying to cut her some slack.  I had to help her put on a pair of Depends just now and she said she was getting sick of this.  I didn't reply, but from what I've read it takes months to get over this surgery plus she's going to have the double whammy of radiation and chemo.

Our major problem right now is one of infection control.  She insisted on having her ostomy open to the air this morning.  When I looked at it, there was green pus on her skin.  I think she has an infection.  She was touching that and messing with it all morning, then she went in the kitchen and got into the container of potato chips we all eat out of.  Dad has said this to her before that she is going to make us all sick by contaminating the food.  He bought her some hand sanitizer that she refuses to use, says soap and water is better.  But she doesn't wash her hands.  When she does she washes them in the sink full of water where we wash the dishes.  Dad pointed out that this is not good either.  I told him when we were alone that this was a long standing habit going back years and it would be difficult for her to break it. 

Hi Lighthouse,

I'm glad to hear that you have removed yourself somewhat from this difficult situation.  That's the best thing for your health, and as you said, your dad has taken the ball and is running with it.  That's good news all round.

I agree that your mom may be depressed.  And that infection of hers does sound good at all. 

Continue to look after yourself.  The last thing you need is to get an infection yourself.  How is your neuropathy?  Are you still losing your balance and falling?  You take care now. 

Hugs to you Lighthouse.

Elaine

Dear lighthouse,

I'm also glad to hear you've removed yourself a bit from the situation.  And I think it's interesting that when someone needs to take a more active role, they will do it, in the case of your Dad.  So, yes, as Carebear has said, it's better for you and him.

Whatever habits your Mom has had for so long, may be very difficult or impossible to break. But, you can only do what you can. No more.  That infection doesn't sound good; hope she has that treated soon.

Continue to care for you!  I wish you better days and peace.
Melinda

Well, the neuropathy wasn't too bad until I had to do 2 days worth of house cleaning last week because mom got rid of the nurse.  If I don't do the work mom yells and screams and carries on.  She still doesn't understand that the more I do the more pain I am in.  Thinks I will build up strength and endurace.

So right now my right patroid gland is swollen, it hurts to eat, every muscle in my body is shot and the nerve pain is excruiating. 

I am so looking forward to Thursday rolling around again so I can start the cleaning process all over again.

Have to find out whether to put warm compresses on the jaw or use ice?  Can't remember which.

Get a cleaning service, PLEASE.

Hugs

Elaine

Oh boy.  Lighthouse, as Elaine said, get someone in to do the cleaning.  That's what will have to be done if you keep pushing yourself anyway.

What's your dad's role in all of this?  He should be helping you.

Ok, lighthouse, as said before here, why are you doing all the housework?  It's a big place, right? 

I will gently say that you cannot (or should not) be expected to stand in as your mother's nurse and care for that huge house.  Please employ a cleaning service...the parents might not agree, but you won't be any good to yourself or them by wearing yourself out in pain. Please stand up for yourself.  We'll be behind you!  ;)

I will try to get a cleaning service but again it would be up to mom and dad as they are the official bosses.  Think chances are very slim that it will happen because last night, she threw a fit over the heating/air conditioning people coming today and how they might see her bedroom which looks like a hospital room triage with all of her bags and medical supplies.

Dad has been very helpful with the cleaning.  I cleaned all the floors while he swept the rugs.  I cleaned the master bedroom and two bathrooms and he cleaned his office and the garage. 

I want to contribute too and he has taken on the nursing job.  If you would have asked me if he would ever change an ostomy bag I would have said a resounding NO.  He is well aware that I cannot do the cleaning but I don't think he wants to wake the sleeping gaint.

I can still hear her yelling at him after I go to bed at night.  And she is back to cooking meals again.

So, I'm going to have to suck it up for round two againa tomorrow.

Mom has two stomas and a bag goes on each one.  I was informed today that she has no intention of wearing those bags 24/7.  She's taking a large bandaid and taping it on.  The surgeon has told her that he might be able to reverse them and this is what she is counting on.  I told her that it might not be able to be done.

She also said that she is shocked that this happened to her.

Well, I'm not.  She's got to probably have the record for the most non-complaints written in a medical record.  Bad kidney blood tests for a year, doctor says do this and this and she says no.  Last year, have a colonscopy, she says no.  It goes on and on....

If she would have had a routine colonoscopy, they could have caught this as a small polyp and we wouldn't be in the mess we're in today.

I'm afraid (hope I'm wrong) that when she has the PET Scan it will show that the cancer is everywhere.  And it will be too late to do anything minus the chemo they give dying patients for pain relief.  I read the Hospice Guide for Cervical Cancer online and it lists psychological changes and pain as being part of advanced cancer.  And the way she's been for the past year sure fits the psychological part. 

Also read where it says once it comes back it's vicious and that chemo doesn't do any good.

I'll say it again, Lighthouse...oh boy.   :(  I agree that this does not sound good for your mom.  

I'm glad to hear that your dad and you are working well together.  I really feel for you.  At least you can vent to us here when you need to.   I worry about your ability to continue with this high level of physical and emotional stress.  Please try to get rest daily.  Are you able to get out at all?  Just a bit of time away from the house every day would be healthy for you.

Take care of yourself.  ;)

Lighthouse,

I believe I owe you an apology.  My last post sounded rather bossy in a way and that's not what this forum is here for.  I'm sorry. 
I have no idea what I would do if I were in your situation.  I think you're doing the very best you can, given the circumstances.  ;) It's hard to deal with a sick loved one, no matter what.  Even if they may be abusive to us, they are still our loved ones and we want to do what we can to help.

So, please keep us updated, and I'm glad you have this sounding board that I hope helps. I will focus on listening to you and encouraging you on instead of giving unsolicited advice, ok?
Take care, dear.
Melinda

Ah Lighthouse:

NYTimes article about people who won't spend money they need to spend and HAVE:

http://newoldage.blogs.nytimes.com/2011/08/04/when-they-wont-spend-the-money/#more-9817

I think of you, and wish you could have more help!

Pride is a very dangerous fault, I fear.  And your mother and father make it very difficult.

HUGS

Elaine

Elaine,

Such an interesting article!  Brings to mind the experience with my own parents. (I'll try not to make this TOO long)  ;)

They were children of the Great Depression, my father's family struggling more than my mother's.  They both worked hard as adults, my Dad worked through the ranks of a paper factory and became a supervisor. His income was sufficient and they saved their whole lives and were frugile. We lived well but not in any way extravagantly. When Dad retired he had a pension and he and Mom had a sizable nest-egg.

Fast forward to my parents' later years: at 72 Dad had 2 massive heart attacks, which he rebounded from remarkably. At 75 my Mom began having problems related to Parkinson's and related neurological issues, but they kept a small home and yard by themselves. They saw this becoming harder to do, so at 80 and 84 years old they used a big part of savings and bought into a retirement community with a patio home.  The yard was taken care of, they could still drive and do what they wanted, but there was a social network they enjoyed, and a medical team there within 2 minutes if necessary.  My mother had a couple falls and broke her wrist twice.
It was a huge expense, but it's been the very best thing they could have done.  My brother, sister and I all asked if they'd want to live with any of us, but they wanted their independence and make their own decisions. So I admire them for that.

Over the next 5 years, they needed to move to assisted living where they shared a room 11' by 14'. There was lots of pairing down of mementos and furniture! This was the hardest for them, but it was necessary. Dad was handing out the meds, and we didn't know what he was taking or giving Mom!  He got lost driving, and ran up on curbs and so the car had to go.  My sister and I got that job, and it was one of the hardest things I've ever done.  :P  It was a huge adjustment for them, and very costly.

(finishing my SAGA)  ;)

I guess my point telling all this is that I am very glad they spent the money the way they decided.  There is really nothing as far as money left now. My Dad will be 95 next month! He's recently had to go to a dementia area at the same retirement facility and the staff is wonderful and he says he's happy there.  My Mother passed in 2007 and through her illness, I and Dad were there daily but again the staff was remarkable, caring and loving.
The way the home is set up is a Continuum of Care facility.  What they paid years ago still helps now.  He can live there cared for the rest of his days at no extra expense.

Extended family members have made mention how years ago my parents planned to leave an inheritance for me and my siblings and how that won't happen.  None of us could care in the least!!  Not like we were planning our lives around that. It was their decision and I think they made the best one possible for them, and really all of us, too.  ;)

95?,,, good for him,,

I think my mom will outlive me,, shes 83 goes to two senior centers a day, along witht eh casino trips, her dad lived to be 88,, her mom to 90,, my poor dad put up with her nonsense for as long as he could take it,, got sick,, (cancer), gave him 6 months and thats about how long he lasted,, almost to  the day

Melinda,

What a lovely story about your parents!  :D   My dad too moved to a beautiful assisted living facility when he needed to, and it was the best thing he could ever have done.  He had great friendships, loads of recreational activities, and he volunteered every day.

At the end of his life, he left this world with what he came here with.   My inheritance was knowing that he lived a good life.   My cup runneth over.  ;D

Thanks, Carebear.  Your account is well-said with a lot less words than I!  ;)

Every family's situation is different, but for some the assisted living facilities are a great option.  As with your Dad, my parents had great friendships and activities, and a church family.  Some of the nurses have become good friends, and by the way, I think they are angels sent down from heaven.  My parents had so much more socially and medically than me or my siblings could have provided them.

Really?
Yes, Daddy is almost 95 and thinks he's still 25!  He had an awful bout with pnuemonia last fall; his doctor didn't think he'd pull through, and yet he bounced back. He's a real character.  Now that my Mom is gone, he's on a mission to find a new wife.  :o With his dementia getting worse, it makes for either embarrassing or funny stories.  Always a very reserved person, now what comes to mind, comes out of his mouth! 
A while back he told me he asked a lady there to marry him. She said no, she didn't enjoy sex. He said he told her "you must have liked it sometime, because you have 4 kids."  Then he made some mention to her concerning her liking to men.  He said "she didn't take too kindly to that".  I said "Gee, Daddy why do you think that is?"  ???

lighthouse,
I didn't intend to "hijack" your thread.  I guess I thought some humor might help you a bit. I'll keep you in my thoughts and prayers in your situation with your parents.  Take care, dear.
Melinda

Carolina,

Thank you so much for the insightful article.

Meld,

No offense taken on your posts.  i laughed so hard about your dad's story.  Just what I needed to brighten my day. 

Mom's PET Scan is scheduled for Thursday mroning.  We will know the results on Friday and get the fnal diagnosis. 

lighthouse,

I'm glad my ramblings were able to brighten your day.  ;) My Dad is definitely not "politically correct" any more.

I'll be thinking of you all with your Mom's upcoming PET scan and keeping you in my prayers.  We'll be looking forward to your updates.
Take care, dear
Melinda

The PET Scan found the recurrent cervical cancer right where they thought it would be and nowhere else.  This is good news.  She will have concurrent (at the same time) radiation and chemo for five to six weeks.  Radiation five days a week and chemo for four hours once a week.  Hopefully this will take care of it.

I don't drive so I don't get out of the house unless mom or dad takes me.  I have been doing Earthing which has seems to make me feel better. 

Our dear lighthouse,

That seems to be the best news you could hope for, doesn't it? I'm so glad there was nothing that metastasized.
I'll keep her and you and your Dad in my thoughts through her upcoming procedures.  It sounds like quite a round of work she'll be doing for the next weeks. So happy that you have been feeling better. 

Thanks for your update; I was just thinking of asking you today if there was any PET news. ;)
Melinda

Hi lighthouse,

I have been thinking about you lately as well.  Very nice to hear from you, and very good news in deed about your mom.  I'm not familiar with Earthing.  What exactly is it?  Whatever it is, I'm glad it is helping you.

Take care.

Lighthouse, you must be so relieved. How has your mum taken the news? And your dad? Thoughts and prayers for all of you.

Kathyx

Quote from: Katybarstool on August 16, 2011, 12:56:53 PM
Lighthouse, you must be so relieved. How has your mum taken the news? And your dad? Thoughts and prayers for all of you.

Kathyx

Mom is taking the news well, although there is been a lot of complaining and balking about having to have the treatments, all the doctor's visits etc.  She's getting her first chemo treatment today.

Dad is taking the news well.  His health problems have expanded.  The chiro told him yesterday that by looking at his x-ray he can tell he has osteoporosis.  He won't know how bad it is unless dad gets a bone scan.  He's having pain in his back, hip and foot.  Part of the problem with his foot is plantar fascisis.  He didn't follow the doctor's instructions from a year or two ago about wearing his orthotics in his shoes all day and also about wearing the brace at night.  When will people ever learn!

Dad and I are handling the grocery shopping.  Sometimes we have gotten the wrong thing or forgotten something.  I just tell we are doing the best we can.

She threw a fit the other day about my mouth guard case.  Apparently it smells.  She's even tried bleach on it and it won't get it clean.  I researched on the Internet and apprently keeping it in the plastic travel case is not a good idea - i.e. mold etc.  So it is now in a glass jar.  I'm also going to get some Retainer Brite to soak the guard in every day.  I think I will take everything upstairs and take care of it myself.  I already do the cleaning but she had to get involved with the case.  Still a lot of nit picking and do this and do that etc.  She's suffering a lot of back pain and when she's in pain she treats everyone like you know what.

Sounds like you are still having a tough time of it. Your dad is old enough to decide whether he wants to wear the orthotics - if he doesn't then he has to suffer the consequences. Guess your mom still likes to have some control. I hope things improve for you soon.

Just a thought about the brace container, my dentist recommended a weak solution of Milton sterilizing fluid (the stuff you use for baby's bottles) to keep my dentures clean. It works amazingy well, and is relatively inexpensive.

I'm glad to hear from you.

Kathyx

The good times keep on rolling ...  Could it get any worse, you decide.  Mom's been having terrible back pain.  She's tried pain pills, a fentonal (spelling) patch etc.  Nothing has worked.  Because of being on the chemo and radiation she can't have anything heavy duty.  Today she is finally getting an MRI to see what is going on, this was the first slot they had open. 

She's been meaner than a junk yard dog!  I don't know how much more of this I can take, especially if she is unable to get any treatment.  She has four more chemo treatments and five more weeks of radiation.

Our friend who is a chiro said he would see her but he has to know what the problem is first.  I doublt that we will get any test results until next week.  I'm wondeiring if they send her to the pain clinic if they can give her anything.

Lighthouse

What a nightmare. Your mum is really going through it, and you are her scapegoat. I wish I could lighten your load.

Is the carer still coming to see your mum? How's your dad dealing with things?

Keep your chin up - we are all here for you.

Kathyx

Whoa Lighthouse,

You just get one thing after another.

It is amazing.

Keep us posted.

I would scream and shout and slam doors, I do believe.

Hugs

Elaine

Dear lighthouse,

You poor girl.  :(  I feel so badly for all three of you.

I only hope that things get resolved sooner, rather than later.  Thanks for keeping us updated.  You try to take care of yourself, okay?  :)

The MRI shows that she has a compression fracture of the T5 vertebrae.  The doctor said it would heal in three months if she could handle the pain but since everything she takes makes her sick, he said that an interventional radiologist or a neurosurgeon could do a procedure where they insert a ballon to blow the vetebrae up and insert cement in there.  He said he's never had a failure with anyone that's had it done.  They will also take a piece of the bone and test it to see if the cancer has moved there.  It could be any number of things that caused it such as old age, osteoporosis etc.  So, they decided to go with the procedure as soon as possible.  For now she is going to get morphine for the pain. 

The doctor says that the fracture doesn't show up on the PET Scan she had done in August, so it just must have happened.  Looks like we are making progress.  Can't wait for her to be free of the pain.

It's a fracture of the T6 vetebrae.  The hospital nurse last visited two weeks ago to check her wound and that was the end of her.  Nobody has been here since. 

Dad is handling things pretty good but I can tell that he is getting more and more upset.  He is not used to being a caregiver and all this stress is not good for him either.  I think he's really upset about the osteoporosis since he has it too and can see himself going down the same road as mom. 

I'm pretty much staying out of it now.  Nothing I can do or say anyway. 

I'm just very angry and very sad.  Would like to have my old relationship back with my mom.  Up unitl a year ago we were always best friends.  Did everything together, talked about everything.  Ever since my Sjogren's diagnosis three years ago things changed.  Her being in denial of the diagnosis didn't help matters.  People always comment on what a beautiful relationship we have and they just don't know what has happened.  Makes me wonder if it ever existed after some of the comments she has made about me and what has happened in the past. I try to think it is the cancer talking but I just don't know.

Dearest lighthouse,

It is so difficult to hear our aging, sick parents say hurtful things...things that they would never even dream of thinking when they were well.  I understand completely, and share in your sadness.

For now, you need to hang on to the great memories.  Not many daughters can say that their mom is their best friend.   :D

When my dad would get ornery, I would just say nothing, because correcting or getting upset only made him worse. Then I would find an excuse to leave for a while.  There were many weeks that I had to "grocery shop" 4 or 5 times.  ;)

Thanks for sharing.  Take care of yourself.

Dear lighthouse

I am so sorry you have to go through this with your mom.

It is very hard to be sick and have to deal with sick ageing parents, I've been there.  I think your mom is probally scared about what is happening to her and doesn't know how to deal with it.

I also think, being a parent myself, that when she found out you were sick it scared the poop out of her.  Maybe denial is the only way she can handle that.

You are a great daughter and when she is gone you will have a great feeling that you did ALL you could for her.  I am sure whether she tells you or not she is very proud of you and gratefull for all you do.   ;) Cricket

Dearest Lighthouse:

Amen to everyone.

Still, it is more than you should have to bear.

However, life isn't fair.   

Is it?

Hugs

Elaine

Thank you everyone for your caring and well thoughout responses.  To have people who understand makes one feel not so alone.  Believe it or not posting here has really helped me. 

The interventional radiologist agreed to do the surgery but with no guarantee of success because her vertebrae was so severely fractured.  But the procedure went well, almost textbook in fact.  He said that the vertebrae was really crushed bad.  Said it would be another 12 to 24 hours to see if she is going to be pain free.  She is highly medicated right now. 

The next question will be is if she is going to follow the post op instructions.  Dad will get the instructions and we will see how it goes.

The second question, is what they are going to do about the osteoporosis and who is going to handle the treatment, the oncologist?

According to a book I'm reading about osteoporosis and various studies, the problem with the bone drugs i.e. Fosomax, Boniva, Actonel, Reclast etc.  is that the harden the outer part of the bone so that you get good bone density results.  But the inside of the bone is still brittle and weak and that is why people are fracturing their pelvis, hips, femurs etc.  Plus all of those drugs have horrible side effects such as necorosis of the jaw. 

As far as calcium and Vitamin D are concerned, I don't know with the bypass they did to her colon because of her tumor will let her absorb them.

I will just set back and wait and see.  Did however explain to dad about the bone drugs and mom alaready knows about that.  But whatever decision they make is theirs and the doctors I'm keepiing my lips zipped.

Lighthouse,

It's encouraging to hear that the procedure on your mom's vertebra went well.  I hope the outcome is beneficial.

My dad had osteoporosis (as have I), and he suffered terribly from compression fractures in the spine.

There is a newer bone building drug available that is injectable, and it works differently than Fosamax, for example.  A friend of mine has just started using it but I'm sorry that I don't know the name.  He is seeing an Osteoporosis Specialist, which is a specialty I had never heard of before.

I'm glad that you find support from this board.  You are definitely not alone.  Continue to take care of yourself.  :)

My mother has osteoporosis and was on Boniva for something like 10 years, maybe more. Her doctor just kept refilling it and refilling it.

One sunny afternoon she was outside playing with her dog who started getting frisky, running back and forth. He bounced up against her leg. His weight bent her knee back and shattered it to bits.

Lots of pain and surgeries and rehab later, her *new* orthopedic doctor told her that people aren't supposed to be on that medicine for any length of time, like no more than a year. He said that what it does is keeps the osteoclasts, cells that destroy dead bone, from doing their job, so that all the old bone is still there. He said the old bone has to be recaptured by the body at some point in order for at least SOME healthy bone to be deposited. Her bones, he said, were like jello with an m&m candy shell.

Another reason we have to be vigilant when it comes to our medicines.

Hi Lighthouse

I'm so pleased that your mum's surgery was such a a success. How's she doing now?And how are you?

Kathyx

Quote from: Carebear on September 20, 2011, 09:22:05 AM
Lighthouse,

It's encouraging to hear that the procedure on your mom's vertebra went well.  I hope the outcome is beneficial.

My dad had osteoporosis (as have I), and he suffered terribly from compression fractures in the spine.

There is a newer bone building drug available that is injectable, and it works differently than Fosamax, for example.  A friend of mine has just started using it but I'm sorry that I don't know the name.  He is seeing an Osteoporosis Specialist, which is a specialty I had never heard of before.

I'm glad that you find support from this board.  You are definitely not alone.  Continue to take care of yourself.  :)

Carebear:

I researched on the Internet and it sounds like your friend is taking Forteo, a parathryroid hormone.  It is an injection once a day for 1 1/2 to 2 years. 

I ordered some strontium to take as it's a bone maker.  Will see how it works.

Quote from: Katybarstool on September 22, 2011, 12:58:23 PM
Hi Lighthouse

I'm so pleased that your mum's surgery was such a a success. How's she doing now?And how are you?

Kathyx

Mom is not doing well.  Last night she had a temperatue of 101.1 after her chemo treatment.  The doctor said to treat it with tylenol but if it goes to 102 dad is to take her to the ER.  She did her radiation treatment this morning and is resting in bed. 

Even though the surgery was a success, she is still in horrible pain.  The doctor said that she might have worse or different pain for 3 to 5 days or it may never go away.  She is very upset about this.  I overheard I conversation between her and dad last night.  I think she was questioning why she might have this pain forever and he told her that they did know what her back pain was and she continued doing things.  Her same old motto of if you work hard things will get better.  She is wearing two pain patches now and on some different pain pills.  Wil just have to wait to see how it goes.

As for myself, well I'm exhausted, haven't washed my hair in three days, but you won't tell anyone will you!  LOL! 

Ran the attachments on all the floors and cleaned the launry room this morning.  Cleaned up the dishes from last night's dinner while taking screaming commands from the couch.  One minute is was put the cole slaw in a smaller dish.  The next why haven't you put the larger coleslaw dish in the dishwasher and started it.  Because I'm putting it in a smaller container.  Well then just throw it out.  Sheesh!

When I was out working in another room I overheard another conversation between mom and dad.  I think he said to her don't you think we need to get some help i.e. the nurse in here.  She responded, no I don't want her here all the time.

I'm not surprised you're exhausted, you have had a rough ride with your own health and caring for your parents. It's such a shame that your mum won't accept help Maybe she thinks she will soon be back in control? Is it safe for her to use two patches and drugs?

I wish I could lighten your load just now, but I am sending you some positive vibes.

Kathyx

Quote from: Katybarstool on September 23, 2011, 01:00:09 PM
I'm not surprised you're exhausted, you have had a rough ride with your own health and caring for your parents. It's such a shame that your mum won't accept help Maybe she thinks she will soon be back in control? Is it safe for her to use two patches and drugs?

I wish I could lighten your load just now, but I am sending you some positive vibes.

Kathyx

I guess so, that is what the doctor prescribed.  I haven't looked at her meds.  Dad is taking care of that.  Maybe I can take a sneak peek.  She just threw up twice again after taking her medication.

She isn't drinking her water or her gatorade like she should.  I'm afraid she will end up in the hospital although that won't be all bad.  She wouldn't like it though.  That is why we need a nurse here to make her do what she should.

Lighthouse,

You must be so stressed and filled with worry.  No wonder you haven't the energy to get things done.

It would almost be a good thing to have your mom evaluated and stabilized in the hospital would it?  This would also reduce the stress somewhat for yourself and your dad.  Try to get some rest.   :)

I think that they finally broke me.  I can barely move, hold my head up, have a headache and all I want to do is go to bed but that's not an option.  Dad asked how I was doing and I said fine.  No use explaining, unless I have cancer there is nothing wrong with me. 

Four days of being up, non-stop stress plus having a flu shot on Sunday and four moles removed on Monday at the dermatologist haven't helped. 

Will see my rhuemy next month. Would not be surprised if another AI shows up on the radar.

On a happy note.  I got my cat some new cat food because he is so finicky.  He loved it.  In fact he was even doing tear outs, playing with his toys which he hasn't done forever, carrying them in his mouth.  He's 11 now so it is fun to watch him have some fun.

Lighthouse,

Give that kitty cat a hug from me.  ;D   Aren't pets precious?

Lighthouse - just reading what you're enduring at the moment is pretty overwhelming, so I can't imagine what it's like living your life right now!

Could you speak to your rheumy soon rather than waiting a month before your appointment?  Everything is flaring by the sound of things, and maybe some Prednisolone would help?  Or some adjustment of the meds you're on?

So glad to hear you're getting such pleasure from your kitty cat!

Thinking of you - Chickpea

Amen to Chickpea,

Hugs, Lighthouse

Elaine

Yes, I may indeed have to speak with my rhuemy.  Things are that bad.

I have been debating about whether to post about this or not but hear it goes.  The very first thing reported on mom's PET Scan was:

diffuse cereberal atrophy

I see that the causes for this vary including old age, dementia etc.  But it is a marker for Alzheimers.  I only scaned the rest of the report but I would like to get it back from my dad to fully read it.

From what I've read of Alzheimers I believe that mom could have it.  The anger issues, the repeating the same question over and over again.  All of this seems to be getting worse the more medicated she is.

I don't know whether to bring it up to dad or not as to whether the cancer doctor has addressed this.  I have a feeling that he hasn't and I don't want to add to dad's stress load.

She's been having difficulty talking i.e. we can't understand some things she says, she says she doesn't know why she can't talk anymore.  This has been since her last chemo treatment and she is having difficulty spelling some words.

Lighthouse:

Here is NIH on the topic:

http://www.ncbi.nlm.nih.gov/pubmed/7196545

But it is old research, I'll look for newer stuff.

Neurology. 1981 Sep;31(9):1180-4.
Cognitive correlates of diffuse cerebral atrophy determined by computed tomography.
Wu S, Schenkenberg T, Wing SD, Osborn AG.
Abstract
The relationship between severity of diffuse cerebral atrophy determined by computed tomography (CT) and severity of cognitive impairment was examined in 55 men, 50 to 77 years old. Partial correlations, controlling for the effects of age and education, indicated that increased cerebral atrophy was associated with decline in orientation, recent memory, and general level of intellectual functioning. Correlations between degree of atrophy and decline in immediate and remote memory were not significant. Despite significant associations between cerebral atrophy and some aspects of intellectual functioning, considerable variance in performance on cognitive tasks was not explained by cerebral atrophy. Therefore, the degree of diffuse cortical and central atrophy observed on CT scan did not closely predict the degree of cognitive dysfunction, nor did the observation of cerebral atrophy necessarily indicate the presence of dementia.

PMID: 7196545 [PubMed - indexed for MEDLINE]
MeSH Terms

LinkOut - more resources

Wikipedia:

http://en.wikipedia.org/wiki/Cerebral_atrophy


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC492442/pdf/jnnpsyc00170-0033.pdf

Correlation between diffuse EEG abnormalities and cerebral atrophy in senile dementia

Maybe these will help.

ASK her doctor what he/she thinks it means.

Keep us posted.

Hugs   

Elaine

I'm sorry to hear about you're mom's PET scan result.  As you said, this may be due to normal aging or it may be dementia.   So of course you are worried, especially with the signs and symptoms your mom has been exhibiting.  I'm sure your dad is already thinking the same thing, so it may be helpful for both of you if you discuss it.

As for you, dear friend, you need to get yourself in to see the rheumotologist.  When faced with such an emotionally draining and stressful situation as you are, you must always first care for yourself.  So please, make sure you do this right away.

If you can get the report from your dad, please let us know more.  We're here for you, Lighthouse.  ;)

The good and the bad.

The good.  Mom's tumors are shrinking so they are going to reduce the level of radiation they are giving her.

The bad.  She is so sick because she is dehydrated.  If she does not drink 8 - 8 ounces of water / liquid today, tomorrow the doctor is going to put her in the hospital and hook her up to IV's.  Mom's excuse for not drinking is that she has the kidney stent and that means if she drinks she has to get up and use the bathroom every couple of minutes.  I'm sure having her in the hospital wil lhelp but she will just go back to dong what she does when she comes home.  That's why we need a nurse here because she doesn't pay attention to anything we say.  I'll let dad figure that out on his own.

Lighthouse

How are you feeing today? When will you see the rheumy? Is there any possibility your mum could have a catheter to stop her having to get up for the bathroom. I know it seems extreme, but it can also be a relief if you have to drink large amounts of liquid.

Sending you a big hug.

Kathyx

Lighthouse,

That's good news that your mother's tumors are shrinking and the level of radiation can be reduced.  But again, she seems to be making her progress worse by not drinking what she should.  It may come to her being admitted to get the liquids needed. I must admit it's good to hear you will leave some decisions to your Dad to sort out.
I also will ask if you've been able to see your rheumy?  Please take care of yourself, and know we care.

Hugs to you,
Melinda

Mom is at the infusion center getting three hours worth of liquids today.  The doctor told her that if she got sick this weekend that he was going to be on call at the hospital and he would have no other choice but to admit her.  I asked dad if he thought mom would drink more and he just laughed!

I'm feeling better although tired today.  The montly visitor arrived and geting it going has helped.  I will see the rhuemy the third week of October for my six month appointment.  Since her office serves a multi county area I decided not to call right now but will if things worsen again. 

I think the catheter is an excellent idea!  The doctor thinks that maybe some of her back pain is coming from the chemo treatments.

Mom's main focus now is getting my brother to move here.  She is sure he will do it.  I tried gently to remind her that he refused to do so last year.  He wrote back and said that they are not looking at the rental properities because they have not put their home up for sale and have too many other things going on right now.  I think that was a NO!

But get this, after he was told that mom has a broken back, he and his wife want to come for the Holdiays!  You've got to be kidding me.  They said they would do all the cooking and cleaning but who is going to entertain them 24/7.  Plus it looks as if they might come before that just to look at properties to appease her and then not buy anything.

The oncologist told mom this week that the back surgery did not work.  She's in more pain than ever.  Told her she better get used to it, that it will take months to heal.

Her last chemo treatment was yesterday.  She has a couple more of weeks of radiation.

Thanks for the update, Lighthouse. 

How are you doing?

Pain has no beginning or end, it only exists and torments.

You do not get used to pain.

You can do some things to deal with it......

But it takes a terrible toll.

And at your mom's age and with what she has suffered, she isn't going to 'get used to' anything.

Any reports on the meaning of her brain scans?

Hugs

Keep us posted

Elaine

Mom was back at the infusion center this week getting three more hours of liquids.  She keeps disregarding what the doctors tell her to do. 

She will get an epidural next week at the pain clinic.  Hopefully this will get rid of her pain from the fractured vertebrae.  I'm not counting on it though. 

I have posed the question to my dad as to what does "dissfuse cerebreal atrophy" mean.  Maybe he will ask one of the doctors.

My health has about reached its limits.  I practically made dinner all by myself yesterday and after working all morning on the computer it really took its toll.  Couldn't sleep last night due to all the pain.  Had to get up this morning and do more housework. 

Had basically the same conversation I always have with mom. 

Her - If your pain was bad enough, they would be giving you an epidural like they are me.  Tried to explain that it wouldn't do me any good when it's body wide pain being caused by my body trying to kill itself everyday.  She said I didn't need to do the work today but I did because I didn't want to listen to her scream about it later.

If I'm bad enough next week maybe the rhuemy can take care of it either by talking to my dad or sending him a letter.  Doubt that anything will help.  There is no escaping the situation.

I am so happy I want to do a dance!  Apparently mom told dad last night that she wants the nurse to come.  She is coming Monday morning!  Woo Hoo!  Can't believe it!  I may just get some well needed rest.  I guess she realized that she can't do all this stuff that is needed around here.

That's fantastic news Lighthouse. Hopefully you will then be able to have some well deserved relax and recovery yourself.

Hugs
Kathyx

I'm so happy for you, Lighthouse!   I hope things settle down a bit for you.  I bet you'll sleep well tonight!  ;D

High time!

You have earned stars in your crown!

Hugs

Elaine

Lighthouse,

So how are things working out with the nurse?

I was awakened at 2:30 A.M. by my mom.  She told me dad had fallen getting out of bed and was in terrible pain.  I called 911.  He's been at the hospital almost two hours and we haven't heard anything yet.  He was complaining of his back hurting so they had to stabilize him on a board first.

Mom has a low white blood count so she can't go to the hospital but she can't drive with her back anyway.  I don't drive.  We are going to call the nurse who was going to come this morning anyway to have her come earlier to take mom to radiation and to put on an ostomy bag.  Then her and I can go to the hospital.

Hope this is nothing serious but it sure sounds like a fracture of some kind to me.  Can you believe it! 

No I can't! I'm so sorry you are constantly dealing with stress!

Hope your dad is ok, let us know & I hope the nurse is working out too.

Carie

Oh, lighthouse!

Unfortunately I CAN believe it.

Life is a one way street and it gets really busy at the end for many.

I have a friend who cared for her parents in their 90's, she frail and declining, he with diabetes and needing repeated amputations!

TWO hospital beds, home health aids, major complicated trips just to see the doctor.....

And she worked out of the house full time, as did her husband.

You just have to put your head down and get through this, I guess.

I don't see how you do it.   

Perhaps when things are calmer, you can 'pep things up' by taking driving lessons!

Set yourself free.

Sigh

Well, please keep us posted.

It's always something.

Hugs

Elaine 

Breathe in:  I am
Breathe out:  calm

Thanks again Joe!

Quote from: lighthouse33 on October 21, 2011, 01:56:06 AM
I was awakened at 2:30 A.M. by my mom.  She told me dad had fallen getting out of bed and was in terrible pain.  I called 911.  He's been at the hospital almost two hours and we haven't heard anything yet.  He was complaining of his back hurting so they had to stabilize him on a board first.

Mom has a low white blood count so she can't go to the hospital but she can't drive with her back anyway.  I don't drive.  We are going to call the nurse who was going to come this morning anyway to have her come earlier to take mom to radiation and to put on an ostomy bag.  Then her and I can go to the hospital.

Hope this is nothing serious but it sure sounds like a fracture of some kind to me.  Can you believe it!

Bless your heart!  Like your plate isn't already overfilled.  You will be in my thoughts and meditations.  You and yours...

My dad is still in the hospital.  They are still doing tests to determine what caused the fall.  Last night he was to have some sort of special CAT Scan on his subclavian and carotid artery.  Have not heard from him this morning.  Have not called his room because he will ask about mom and I don't know what to tell him.

She fell getting out of bed this morning and how has a new injury.  Her ribs and underneath them are hurting when she breathes.  I called the nurse and she will be here to do an exam at noon.  I put mom's pain patch on her back this moring and she took a morphine pill.  She said if Dad calls, she doesn't want to talk to him. 

A couple of things of concern, if she has cracked or broken a rib will she need to go to the hospital?  With her low platlet count I don't think the doctor will like her being there.  Second, she is scheduled to have her epidural for her back fracture on Monday, wonder if that will have to be put on hold.

Dearest Lighthouse,

I'm so sorry to hear about your parents' newest health concerns.  It's hard to see our loved ones in such pain.

I am not a medical person, but I doubt that hospitalizing mom would be called for if her rib(s) are broken. Rest, time and pain management are about all that can be done.  Given her osteoporosis, this is likely to continue to happen to her.  I know.  It's very difficult isn't it?  My dad was exactly the same.

I don't see any reason to postpone the epidural either.  But you will know more once the nurse sees her this afternoon. 

Have you seen your rheumotologist yet?  I know the appointment was in late October. 

As always, you are in my thoughts.  Please keep us posted on everyone's condition.

OMG.

It's a pile up of disasters, coming faster and faster.

Just cannot believe how much you are dealing with.

Hugs and kisses and calming thoughts sent your way.

Elaine

I saw my rhuemy this week.  She thinks I'm doing well and that I just have to deal with the stress.  It's the not so fun part of being in a family.  She said to get out and take walks.  Said this time of year I could be out more than ten minutes.  Mentioned an SPF Aveeno Sunblock.  So, I guess I'll order the Earthing Shoes I've been wanting and try to get out.  Right now I can't leave mom at all.  Rhuemy ordered the usual blood work so we'll see if anything new pops up.

We did discuss a problem I'm having with my hands being clenched all the time.  She said to discuss that with the neurologist, it's a brain / command center / central nervous system disorder.  I guess babies have clenched fists but not adults.  Will see the neuro tomorrow.

The nurse is working out good.  Mom still is unhappy about having anyone in the home.

Lightouse

Just catching up with your posts. I can't believe that both your parents have had falls. Has the nurse seen your mum yet?

Wishing you all the very best for your appointment tomorrow.

Hugs
Kathyx

The nurse is here basically full time.  She is great.  We get along well and have laughed a lot.

Dad will need to have surgery on both of his carotid arteries.  They will do one and then the other two weeks later.

Mom was checked out by a doctor and he just asked her if she could do anything more to hurt herself.  She had the epidural and it didn't help the pain.  In fact it was worse.  She has fallen two more times.

She was admitted to the hospital yesterday morning.  The lympheodema she has in her leg was worse than usual.  Fluid was pouring out of both her legs and her face.  They will treat it there and she will probably come home tomorrow.  She is on oxygen and is doing better with it.  I hope they send her home with it. 

The neurologist said that the way I am clenching my hands is due to the tremors.  It's more comfortable for me but that I could practice stretching them out on a table.  She said what babies do is clench their hands with their thumbs tucked in and I am not doing that.  She said that people with tremors also sit with one of their hands underneath their leg to stop the tremors.  I do that too.  The tremors are due to the Sjogren's.

I am still very tired, helping out a lot but it is such a relief to have the nurse here.  Mom was reluctant at first but now that dad has his health concerns, she is happy that she is here.

Dearest Lighthouse,

So glad you have some help.

You need a month at a five star hotel, SOON.

I'm sorry about the tremors.  Do you have other neurological conditions related to your Sjogren's?

You deserve medals and stars in your crown, angel.

You are going above and beyond, and have my respect and admiration.

Hugs

Elaine

I hope whatever higher powwer that might be out there sends you some help ,, its almost impossible to keep up this pace

The neurological conditions I have due to Sjogren's are:

peripheral neuropathy - small fiber neuropathy mostly sensory with a little bit of motor. large fiber neuropathy

tremors

ataxia

body jerking - different parts with twitches and jerks

muscle spams due to the neuropathy

carpal tunnel syndrome in both arms

white matter lesions in the brain

The onset of all this came shortly after the Sjogren's diagnosis three years ago.

My mom is due to come home this morning.  They will be sending oxygen home with her.  I'm really happy about this.  She is having so much trouble breathing.  They have been trying to find a pain medication for her fractured back. 

The nurse took my dad to the emergency room this morning.  He has been in pain and nassaueted since he came home.  She said the ER doctor pushed on his left stomach and back and dad yelled out in pain.  They have given him morphine and something for the nasaue, done x-rays etc.  Hopefully, they will get to the bottom of it. 

They told the nurse at the hospital that she saved mom's life by bringing her to the ER.  They also told her that if this happens a second time (her not eating and drinking) that they will install a feeding tube. 

Thanks for the update, Lighthouse.

I have all of those things, too!  Onset about 2.5 years ago, but STILL sero normal for Sjogren's and ALL auto immune conditions!

Amazing, isn't it?  Also SICCA and Interstitial Cystitis are in my bag of goodies.

AND Progressive nerve deafness, and two episodes of my small intestines just shutting down for business causing great agony (and one three day hospitalization) while we waited to see if my small intestines would start working again or I would have to have emergency surgery.

Sooo, I have all the bells and whistles, but no grand prize of diagnosis.

Some days the cramps are the most exciting thing that happens to me!

But no noticeable tremors, so far.

Hang on angel.............it has been a bumpy ride for sure.

Hugs

Elaine

PS I just read your last update on your father.  You are on the fast track to insanity darling Lighthouse.    Or is it a revolving door in Hades?

Just hang on and keep breathing.  THANK GOODNESS you got the nurse.

HUGS!

Elaine

Hi Lighthouse,

Thank goodness for the nurse, for sure!  And for so many reasons.  It sounds like she has your mom and dad's medical care under control.  Great that the two of you can share a laugh, especially with all the stress you are dealing with.

Thanks for sharing.  Take care of yourself.

The doctor told my dad that he thinks it is may be the gallbladder.  And dad said something about gallstones.  So whether he had gallstones in the past or they found them today, I don't know.  He is waiting to be taken for an ultrasound. 

If he has to have surgery it will be his 11th since 2009.  Yikes! 

Will post back when I know more.

They found nothing wrong at the hospital.  They did change his pain medication.  The nurse told our nurse that she's sure stress is playing a part in this.  Stress always makes pain worse.  I can't take away his stress, I'm overwhelmed with my own.

Dearest Lighthouse,

Just wondering how you're holding up.

I'm assuming no news is at least NOT bad news.

Are you getting a little break from the hospital-go-round?

Hugs

Elaine

Carolina,

Here I sit, waiting on another phone call.  Dad took mom to see her oncologist, he didn't like how her leg looked and was unhappy with the treatment done at the hospital, so she is at the Outpatient Center getting an ultrasound to see if she has a blood clot.

Mom will not do anything anyone tells her to do.  Will not elevate her leg, will not rest, keeps standing on it etc.

One of the highlights of the week was mom falling on her head while trying to straighten a rug.  Dad was so mad!  He said after all we've been through, you need to stop being so anal about the rugs.  You need some pills.  I chimed in with antidepressants or anti-anxiety medication and she needs to relax.  Knowing her, she wouldn't take it anyway.

As far as dad, the doctors are trying to decide what to do.  Some want him to have the carotid artery surgery.  Others say that if he has had a stroke that he is not a candidate for the surgery.  Guess we will know if he has had a stroke after the results come in from the CAT Scan of the head he had done this week. 

lighthouse,

That mom of yours would make me laugh out loud if her situation were not so serious.  She's stubborn beyond belief.   ;)

How are you managing?  It sounds like you are trying to take everything in stride.  Take care of yourself.

I am doing so much better since we have the nurse.  She has alleviated so much stress.  She's funny, very nice and keeps thing buzzing.  We have laughed so much while out running errands.

Mom's test for the blood clot yesterday was negative.  And dad told me that the cancer doctor gave them great news, her tumor is gone.  The chemo and radiation worked!

But, she fell again in the bathroom last night at 4 AM.  The Home Health Nurse was here this morning and she said mom should go to the ER and be evaluated by a doctor.  She refused to eat and drink.  The nurse said she needs protein for her COPD and fluids for her kidney problem.  Mom was not happy to be going back again.  And how many times was this going to happen.  Our nurse told me that this would continue to happen over and over if she doesn't eat and drink.

I wonder if the hospital will install a feeding tube?  That's what they said they would do if she came in there in bad shape again.

Mom was not hospitalized after her last fall but she does have cracked ribs.  Doctor said it would take from six to eight weeks for those to heal. 

Her blood tests that she had drawn with her regular doctor show renal failure (abnormal BUN and Creatin) from not eating and drinking.  Her lipids were also abnormal and she is at high risk for a stroke. 

She has lost four pounds in four days and now weighs 117.  If things do not improve, they will install a feeding tube. 

We hired another nurse to work another shift.  She is not happy about this.  She told the nurse that dad and I are lazy and that we could take care of her but don't want to. 

I think that she is dying.

Lighthouse, your story brings tears to my eyes every time I re-read it. I'm so sorry you're going through all this.

As I read your posts, the thing that jumps out at me over and over is the kindness and love you feel toward your parents. The fact that you called this whole thread "Mom" speaks volumes.

You are NOT lazy, and you're not unkind. You're doing the very best you can. You can't expect more than that from yourself.

Keep talking to us, we're here for you.

Dearest Lighthouse,

I do not want to presume to advise you.

Refusing to eat and drink is a common occurrence for people who are older and seriously ill.

Here is a website on the topic:

http://www.lifenews.com/2003/07/23/bio-17/

Boston, MA (LifeNews.com) — A study published in Thursday's issue of the New England Journal of Medicine says some terminally ill hospice patients who wish to hasten their deaths forgo food and water.

Lighthouse, please think about installing a feeding tube.  ASK your mother what she wants.  Does she understand that she will not live if she refuses to eat and drink?   Does she want a feeding tube?

This is very hard, no doubt.

And none of my business.

I wish you only the very very best.

I apologize if this is offensive to you.  You know what's best of course.

Hugs

Elaine

Dear lighthouse,

It is the hardest thing to watch your parent suffer.   Your caring and love for your mom is evident.  This must be breaking your heart.

As Elaine said, I can't presume to advise you.  Only know that I care about you.   

Carolina,

Thank you for the link to the website.  It has come to my mind that maybe she is not eating on purpose.  Now, she is saying that it hurts her stomach when she eats.  She also usually vomits afterwards.  Mom is now down to 114.  Another three pounds lost in two days.

She will see her oncologist tomorrow.  When she saw her GP on Monday, a feeding tube was discussed.  I think she understands that a feeding tube will be installed.  The Home Health RN told us that some people do well with a feeding tube and some do not.  They would rather she eat and drink on her own.  The bariatric surgery would have to do the procedure.  I suspect this is what will happen.  Our one nurse told me that mom will have the right to reject the feeding tube and that some patients will pull them out of their stomach.

Lighthouse, I'm so sorry you're having to deal with this.  You're in my thoughts and prayers.

Dear Lighthouse

It's good to hear that you're getting support from the nurses, and even a companion for lighter moments.  What a strain all this is for you.

Your mother's weight loss must be worrying you but I think Carolina is right to ask those questions.  The difficult thing is to know how to ask your mother what she wants, and whether not eating is a conscious decision to hasten the end.  Or is it simply that eating causes more pain and she's doing all she can to avoid that?

Thinking of you - Chickpea

Dear Lighthouse,


I think of  you shining through all these storms.   

My understanding is the 'refusal to eat or drink' process is that it isn't always a conscious decision, more like
what Chickpea mentioned, it is more comfortable not to eat or drink. 

This is a very hard time, my heart and tears go out to you all. 

Thank goodness you persisted in getting trained nurses to share the burdens, to the extent that anyone can really share your personal trials.

My dear friend's husband talked about the 'tunnel' that he and his family entered during the last months of her life.  It seems endless and dark, but full of caring and concern.   And I know your light is still shining.

Love and hugs

Elaine

lighthouse, You have really had such a tough time this year. So many issues going on with your parents and it is so hard to keep up and keep healthy when one is sick themselves.

I worked as a RN in geriatrics for over 25 years and have dealt with the elderly and all their ailments and diminishing capacity. I also dealt with 2 parents who got ill and died and it is really rough when it is your own parents---up close and personal.

All I can say is that as humans we all have our own idea on how these last days of our lives will be. We all want to have diginity and to be in our right mind. We don't want to be a burden on our kids. We want to do things our own way. We just want!!!!

The trouble is that things start sliding our of our control as we age and when illness strikes it is hard to adjust easily to the new person staring back at us in the mirror. Then when things start happening in rapid succession it becomes an impossible task to keep up with the changes, physical, mental, spiritual, social, etc. The list goes on and on as we all wear so many hats in own lives. When we can do "nothing" anymore that is of any redeeming value is when things hit the wall.

You mom is really acting more normally at this time than you realize. This is not because you are not paying attention, but it is because the sick and elderly can wear us out. When she is hollering, being stubborn, refusing to do what she "should" per doctors orders, etc., she is really trying to take control of her life. Also, when people start to refuse to eat it is often their way of slowly removing themselves from the picture. She is scared, mad at you and your dad, mad at God, mad at the doctors, mad at the cancer, and if she refuses to acknowledge all the stuff that is going on it may make it not real.

The problem with the feeding tube is that, yes, she probably needs one because she isn't eating. However, the cancer may be gone, but if she is having kidney issues she may have a lot of nausea that she is unable to explain or identify to you.

Go to next post. Irish

So often a big event like cancer will take over a persons life, time energy-with all the tests, treatments, etc and in the background there can be other health issues that could be gaining speed.

She can also have depression that needs to be treated. Sometimes just a small dose of antidepressant at bedtime can smooth things over and help with sleep plus settle the nausea, irritability, etc. enough to enable her to eat. Also, if pain is a big issue then eating also becomes impossible. Most of the pain meds cause nausea also. There is a antinausea med called Zofran (think that it right) that doesn't affect the central nervous system and stone people. This could be a blessing for her. A good pain routine of antinausea meds along with pain meds and even a small amount of antianxiety med can help. Be aware that something that ativan will make a person more prone to falls. The antidepressants at a low dose are less apt to do that.

Whatever is going on is not your fault and as hard as it is you can only do so much. I can only give you support and ask you to take good care of yourself. If it was me (and knowing now more than I did when I went through it with my folks) I would buy a nice white girly handkerchief that you can hold in your hand when you are with your mom. When things get wild and wooly just place the hanky between your teeth and bite down hard and tell yourself that you will stay calm. (still holding it in your hand, of course)

I am not trying to be funny. There is nothing to be gained from trying to reason with a person who has no intention of listening to you or the total inability to understand the situation. It is what it is. When this scenario plays out your will look back and wonder what happened to those months or years. What did I do? What did I accomplish? Do I still have all my facaulties?

My sister and I went through this with my father, especially. After our mom's funeral and 10 months and 29 days of selling a house, moving dad, hospital, surgery, nursing home, emergencies and then his funeral, my sister said that she looked in the back seat of her car and saw nothing but McDonalds paper cups and wrappers. She didn't even know if she cleaned out her car as she worked nights as a nurse and had 2 teenagers. Neither one of us hardly remembered the past year. It is what it is. Tough! Challenging! Unbearable at times, but take one day at a time and take time each day for yourself. Take a breather and do something that relaxes you. Watch a little TV or read the newspaper- whatever works for you.

You will make it through this in spite of thinking it will do you in. Somehow, our creator has endowed us all with the ability to survive these things. You have so many friends on this site who are giving you such good advice and comfort. Hang in there girl--you can do this. Irish

Irish, you are such a wise woman. Thank you for sharing your experiences and knowledge.

Kathyx

Irish - thank you so much for sharing your thoughts with us.  I've learned so much from you over the years, but these posts merited reading twice over!

I hadn't thought that a refusal to acknowledge what should be/needs to be done is a way of hoping that it's not really happening.  It's more complicated than just straight denial, isn't it?  Anger can be so hard to deal with that we want to stifle it rather than learn from it, but now I hope I'll figure out new ways of reacting.

I'll try and remember your wise words when I'm taking care of my parents and mother-in-law.  And, if I can, when my children are caring for me. 

Thinking of you - Chickpea

Irish, thank you so much for your posts.  I have really taken what you wrote to heart and have even implemented some of it.

Mom decided to fire the second shift nurse.  She put it like this "We've decided to let so and so go.  What do you think?"  I gripped my imaginary hanky and said "Mom, I am going to bed at 7 PM.  If you have trouble with your breathing, someone can call an ambulance."  I could tell she wanted to say something back but didn't.  The nurse thought I handled it just right. 

The nurse calls it "putting on your armor."  She had to take care of a verbally abusive patient for three years.  She even quit several times.  But in the end she survived.  Some days she would even cry but she made it.

My dad decided that mom is taking too much pain medication so he forced her to cut back.  Now she is in a foul mood today.  I did some laundry and she mentioned that she had some more whites to add to the laod that I had already done, oh well I guess they can be done later.  I didn't take the bait and reply. 

Mom was down to 113 pounds yesterday and didn't eat hardly anything.  Her pusle which is normally high was 124 one day and 99 the next.  We have the tele-port machine hooked up to the phone line so everyhing is registered with the hospital.  They even called about the pulse rate.

She cannot lift her arms anymore due to the osteopprosis.  The doctor is going to get her a clam shell brace made (she will have to be measured) to try to stabilize her spine. Next doc appointment is this Friday. 

There is no doubt in mind that she needs an anti-depressant but I'm afraid she would refuse to take it.

She is gong to make everyone suffer to the fullest extend.  She gets very agitated if somone trys to cook in her kitchen, so we have been either eating out or bringing home take-out.  My dad is getting very tired of this.  After all he has been cooked for for almost 50 years. 

Tell her the antidepressant is to help her:
sleep
relax
endure the pain (most antidepressant drugs increase serotonin, which decreases pain)
feel stronger
whatever will get her to take it

A white lie to help her isn't a bad thing,

In some ways she is very strong.   Believe me I don't care WHAT happens in my kitchen when I'm sick.

I hope you get out in the sun a bit each day.

Hugs

Elaine

Lighthouse,

Good for you for not "taking the bait" as you said.  I used this technique often with my dad when he was ornery due to his pain.  You can't argue with yourself now, can you?   ;)   It is a good idea to disappear for a while when this kind of thing happens.  I know you can't drive, but you can go to a different part of the house, and do something you enjoy.

You are probably right about her not wanting to take an antidepressant as well.   Being less than forthright about the medication may not be the route to take either, because if when she finds out the truth, this sort of thing can have a backlash.

I like the armour reference.  I say I put on my protective bubble.  Nasty things just bounce right off of it and don't harm me.  Thanks for letting us know how things are going.  Continue to take care of yourself.

Lighthouse, Good for you! It sounds like you are taking things under control and not letting them control you. It sounds like you mom could sure use an antidepressant, and yes, if it was me I would try to get a small dose of it to help with "sleep" and also help with the pain.

Youo may want to call it something to help with the pain, cause they do. This way she will be tuned in to the pain control and sleeping better. If you tell her it is for sleep she may not want it cause she will think she will lose control and miss out on controlling her environment.

I guess maybe your Dad could be a closeet chef, couldn't he. Cook things that don't smell so he can get a home cooked meal. Ahhhh, life is something, isn't it. Hang in there girl. You will make it.Tell your Dad to take a deep breath and count to 10 and exhale. He is being tested also. good luck. Irish ;D

The mother of our nurse, fell and broke her ankle.  She has COPD and osteoporosis like mom.  The nurse has asked for a week off, she may work one shift a day.  After mom fired nurse #2 she indicated that she didn't want anyone else here, just nurse #1.

In light of the current situation, she says that dad will do nurse #1's job.  And that her and I will do all the housework.  She said I'd been helping out a lot and I could do it.  I just said nothing!  She will kill us all!

The doctor told mom that her bones are so brittle, that all she would have to do is turn over in bed to break something.  And, not to be doing anything unnecessary.

I told mom and dad to work it out.  They don't listen to anything I have to say anway.  So we will see what happens after the nurse's visit tonight.

Lighthouse,

You must be at your wit's end!

EEEEEEKKKKKK.

Your mother is one strong willed lady, even if her body is weak.

Amazing.

Is she eating now?

I"m still stunned at what you are going through.

Hugs

Elaine

She is eating more - applesauce with whey protein, cereal for breakfast, peanut butter and honey sandwhich, half a boiled egg for lunch but nothing for dinner.  We've gotten her to drink 4 plus ginger ales a day.  She is down to 112.  The problem being that when she is up and active (does too much) she vomits up everything.  Sometimes her pulse is too high, this morning her blood pressure was too low. 

How are YOU doing Lighthouse?  I'm so sorry your mom is having to live with this and I know it must be an awful strain on you.

The nurse left sick this morning.  She threw up before she left.  She was supposed to call when she got home but hasn't, mom is all in an uproar.  The nurse is probably trying to decide what to do, whether to call in somebody else to work or not.  It's really like she's been working two jobs, taking care of her mother and my mom.  I'm prepared for a temper tantrum from mom if dad has  to call in a new nurse.  Will see what my parents and the nurse decide.

As for me, I'm doing okay, all things considered.  A lot of daily pain.  My brother and his wife are coming next week for four days.  Thank goodness my dad rented them a home to stay in, so that they won't be staying here.  If they were it would be ten times worse.  Still a lot of stress that we don't need. 

Try to look after yourself over the holidays, even if you just grab a 5 minute break and enjoy the peace and quiet.

You'll be in my thoughts - Chickpea

The nurse is back.  She had to go to the ER and get a shot for some kind of virus she had.  Luckily, noboby here got it. 

The two days she was gone mom worked dad and I like dogs.  Cleaning up for my brother's arrival this afternoon.  I am so tired I can barely keep my eyes open, my neuropathy has reared up, I can barely move and the icing on the cake was the arrival of the monthly visitor last night.  No sleep last night either.

Now, I'm supposed to entertain, go out to dinner three nights in a row etc. etc. Put on a happy face.  Don't know how I am going to do it. 

Lighthouse, you CAN say no.  You come first.  Period.  End of discussion.  You are no good to anyone if you run yourself into the ground.  You matter.

I could say no but the price would be pretty high.  Mom has made my life a living nightmare for seven months and she could double that if I don't do what I'm told to do. 

This afternoon we were all sitting in the family room talking (brother, brother's wife, mom and dad and I) and the cat was on my lap and I was petting him.  Mom said to me in a snotty tone - "What are you going to do with all that hair you are raking up - throw it on the floor?"  And I said very nicely no I'm going to put it in my other hand but I just didn't want to touch it yet.  So I got up and threw it out and then got the brush and gave my cat a nice massage.

And the dumb move of the day came about shortly afterward when my dad suggested that he take the brother and wife to their rental home.  Well mom wanted to go too.  So here we go take off down the road with no oxygen which I thought was a terrible idea but I kept my mouth shut.  Then the house had a huge set of steep stairs leading up to the front door.  Mom only had slippers on and dad helped her up and got her through the door.  It was no more than a minute or two and mom was demanding to go back home.  She couldn't breathe, wouldn't say so, but I knew that was it.  My sister-in-law looked at me and asked me what the problem was and I said "oxygen."  My brother got her back down to the car safely and now she is sleeping on the couch.

Darling Lighthouse,

You are living in a nightmare.

My heart goes out to you.

Hang on, hang on.

This too shall pass.

Hugs

Elaine

Mom is now down to 110 pounds.  Thursday, she refused to go to the hospital.  She complained to my dad of not feeling well this morning and he told her that nothing could be done as they can't see the doctor.  She has an appointment with him Tuesday. 

Eventually, I feel they will admit her and surgically insert a feeding tube.

I sent dad an e-mail telling him that the nurse told me that mom could live another year in this condition.  And what were we going to do about meals etc.  Mom is mean and abusive and I will not go in the kitchen with her.  So, he has been doing the cooking iwth her.

Dad was mad when he found out some of the conversations I had been having with the nurse.  He told the nurse he knows that mom has been mean to me for some time and he doesn't know what to do about it.  Well, he could put a stop to it very easily if he wanted to.

Now I have been instructed not to be talking to the nurse.  She was the only friend I had.  Dad gets out almost every day by hitting balls, running errands etc whereas I am stuck here.

I had to listen to my brother and his wife give us advice on how to get mom to eat.  What do they think we can force food and water down her throat!  Then they went into the speil about his wife's sister being diagnosed with osteoporosis at age 25 and it is all her fault because she will not exercise.  And people who are chronically ill for 30 years (of course they are referrring to me because they still think I will live to be 80) it's all their fault because of something they have or haven't done in their lives.  If only I would exercise, things would be better.  Like mother, like son and daughter-in-law.

They keep feeding mom the lie that they are going to move here.  Said they were going to look at properties while they were here and how they had sold two of their three houses.  Baloney!

The one bright spot is that I quit my organizational job I had.  Mom will be furious when she finds out.  But I just can't deal with her and the job too.  This will really lift a load off my shoulders. 

I can truly say that my body has finally shut down.  All I want to do is sleep, have a sore throat, dry mouth and eyes and everything aches.  Neuropathy is terrible.

Mom threw a fit on Christmas Eve and made me clean a room for two hours.  That was the final nail.  Then we had a bat in the house that same night.  I heard all the commotion but was too tired to go down.  Dad called some help in and they pluged a hole in the track lighting where they think it got in and it disappeared back in the attick.  Dad called a removal company to come out. 

He came up later to check on me and wanted to know if I knew about the bat.  I was already in bed.

You know Lighthouse,

Honestly, this is a tragedy, but it could almost read as a weird and wacko comedy!

The bat?  The Kitchen fights?  The in-laws with snarky things to say?  eeeeek.

You are amazing, girl.  Amazing.

Hang in there.  Talk to whom you want!

Keep us posted.

You are stronger than you think, I honestly believe this.

Hugs

Elaine

Dear Lighthouse,

In spite of all you are going through, I can still hear the "spunk" in your writing.  As Elaine said, you are a very strong lady.  I know I couldn't manage what you have endured.

When I read that there was a bat in the kitchen, I thought maybe you were going to tell us you hit someone with it.   ;D  Just teasing!  It was the wrong kind of bat.  ;)

Hang in there, friend.  And if I were you, I would keep talking to the nurse.  You just don't have to tell your dad or mom that you are.  I don't normally suggest hiding the truth, but you need her friendship.  That's what I think anyway.  Take care.

Lighthouse I was just reading this thread, and I am so sorry for all you are going through. Life sure can be hard. I will pray for you and your family. Get rest when you can.

susanep

Hi Lighthouse

It must have been a hard decision to quit your job but it seems to me it was asking more of you than you're able to give at the moment.  Enjoy the lightness of your shoulders without that extra burden!  Do you have other things that enable you to get out of the house regularly? 

Carebear's right - you have to keep talking to the nurse.  Maybe you could tell her that you've been ordered not to, so you need her to keep it confidential?  We're always happy to hear what's happening but nothing beats another human being right there with you, and someone who can see what's going on.

Sometimes it sounds as though your family are auditioning for roles in a soap opera, or think they are in a novel by Dickens!

Hope this year brings you more peace and happiness.

Thinking of you - Chickpea

I am really scared this morning.  Mom said that she can feel fluid moving around in her chest.  I said something to both mom and dad that maybe it could be pneumonia.  No reply from either of them.  If it's not that then it could be congestive heart failure.

I read the nurse's notes from last night and it indicated that her leg is swollen.  Maybe it's a kidney issue again. 

In my opinion she should go to the hospital but she has already told dad that she doesn't want to go back there again. 

So I will just watch whatever unfolds.  It's Saturday, laundry day.  Keep myself occupied.

Dearest Lighthouse,

I always read your updates.

It sounds like, as always, your Mom knows her own mind.

And your Dad is agreeing with her.

Follow their lead, hard as that is.

You are a very very good daughter.   amazing.

Hugs

Elaine

I opened my bedroom door this morning and heard no noise from the oxygen concentrator.  Found a note at the breakfast table stating that they had gone to the ER.

Rad the nurse's notes and she indicated that mom's body is full of fluid, she could hear it sloshing around.  Looks like they left shortly after 7 AM.  I'm glad the nurse is with them, she is such a fun person.

Awaiting any update.  I would call their cells but I bet they are turned off plus they probably don't know anything yet anyway.

Dad returned at 11 AM.  The ER doc thinks that mom has pneumonia, although it didn't show up on the chest x-ray.  She is going to have a CAT Scan.  They are admitting her to the hospital.

We will keep all of you in our prayers.

Take care,

Genko

Angel Lighthouse,

Having your Mom in the hospital must be some relief.

We are all with you.

Hugs

Elaine

Lighthouse,

As always, you and your family are in my thoughts.  Take care, friend.

Mom has some nodules in her lungs that have been there for awhile but now they have grown.  The doctor wanted to do a lung scan but after mom found out the test would last an hour she refused to take it.  She is allergic to the CAT Scan dye which would be their next option - a CAT Scan with contrast.  The doctor said there is a workaround treatment that will take one and a half days so that she can have the CAT Scan which is a shorter test.

The doc also asked if mom was seeing a pulmonologist?  Dad said he didn't think so.  I had said something to her some time ago about seeing seeing one and she just laughed and said she didn't need to see anymore doctors. 

She is getting breathing treatments.  They put a mask on her and the medicine comes out of the wall into the mask and she breathes it in to her lungs.  It's like a humidifer.

Also found out that her pulse was 170 the night before she went to the hospital. 

OH dearest Lighthouse,

I think most of us have a slight idea about your Mom's feeling that she doesn't want any more doctors!

Do you know what the nodules are?

Growing doesn't sound great, for sure.

Did she really laugh?  Well, probably a bit sadly no doubt, but she seems to have a sense of control through all this.

I just made myself smile, Lighthouse, since your Mom has always had a sense of control!

A pulse of 170 would feel like my heart were trying to escape or break the sound barrier or something!

Hang on dear lady.   You are earning "jewels in your crown in heaven" as one of my elderly friends used to say!

Hugs

Elaine

Carolina,

Maybe laugh isn't the right word, maybe it should have read "scoffed."

Mom would not cooperate with the pulmonary doctor in the hospital (she didn't like him) so they had to call in her oncologist who talked her into having the lung scan.  The young man running the test held her hand throughout the whole thing and they let her use her oxygen.

The nodules are from the emphysema.  I guess the consensus is now that she has emphysema not COPD.  They changed her medication - put her on Advair and gave her a course of prednisone.  The doc said this should be a one time deal with the breathing issue but if it happens again he will put in an order for a nebulizer that she can use at home for breathing treatments.

She came home Tuesday afternoon.

Mom had an allergic reaction to the Advair.  She has been very sick.  I don't know what will be done about her breathing.  Her back is no better. 

She is now mostly taking her hostility out on my dad.  Poor guy. She now yells at me about him. She needs to get measured for a new compression stocking to help with the swelling in her leg (lymphoedema). 

Angel Lighthouse,

You have to let this go, let them all whirl.

Hang in there angel, there are NO directions for this hard part of life.

Our thoughts and our hearts are with you.

Hugs and love

Elaine

I'm going to close this thread.  Will post back later when mom passes away, whether it be next month or five years from now.

Death by emphesyema is slow and painful.  I urge all of the smokers out there to quit if not to spare themselves, to spare their families from going through it.  I will never forgive mom for the abusive behavoir she has put us through when she knows better.  She never is abusive to the nurse.  I believe that she  has always hated dad and I.  The only way that she was able to live with us in a kind way was to smoke, now that she doesn't she's let it all hang out.

My heart goes out to you.   It is very hard caring for an ill parent, then add in their abusive behavior and being ill ourselves.  My father lives with me and has many health problems including emphysema, he even continues to smoke.  We repeatedly tell him not to smoke in our home but he still continues to do so..

My husband and I are agonizing over putting him in a nursing home.  It is not an easy decision but its getting harder to care for him with my health problems and his.

I pray that you get some peace and life gets easier for you.

I've never posted on your thread until now.  I just wanted you to know I can empathize with you and you have been in my prayers.

Take care of you!!!

Dear Lighthouse,

You and your dad do not deserve to be treated with such disrespect.  I hope you know how special you are to all of us.  Please try to remember that.

Lighthouse, YOu have a full plate on your hands girl. Please know that I am thinking of you.

I want you to think about something also. When I read all this that has been going on I wondered if at anytime you have been able to confront your mom. My sister and I went through this with my dad. For some reason in the last couple of months before he died he started being mean to my sister. It was totally out of character for him but I just got so I couldn't put up with it anymore.

I ended up calling him and telling him that the way he was acting was causing bad feelings and felt that he should change his ways. I told him he was welcome to come out and visit only if he would be civil. I told him that if he could not be civil to both me and my sister and her family that we would just have to cut off visiting.

I told him we would be there for him when he was sick and if he needed help, but we just couldn't take the stress anymore. He clammed up and behaved himself. Almost like a little kid that needed to have stakes set in the sand. What I am trying to say is that sometimes people act like "crap" and they know it but they seem like they are unable to control themselves.

I think that they need someone to "set the stakes" cause that is the only way that they know that people do love and care about them. Just a thought and I don't know if I said it clear enough to be understood. The acting out sort of goes with the territory when people are sick and unhappy. KNow that I will be thinking of you and please take care of yourself. Irish ;D

I have prayed for you and your family. I am going through some of this now. My parents are getting up in their age. Well, this next September my dad will turn 80. It's hard to believe it.

My mother has been in the hospital the most, with all kinds of things. She has a pacemaker, and peripheral neuropathy severely in her legs and feet.

My mom seems to get upset much more with my dad, and he tries to just remain calm, but he is more easy going.

My mom is 3 years younger than my dad, and she builds her life around having 4 of her 6 great grand daughters at her side all the time. They wear her out. Two of them are 5 and twins. One is 8, and the other 12.

She uses most of their money (fixed income) to buy these girls clothes, and their mom (no comment) lets her do it. My dad is nervous at times with all the noise of the little girls even though he loves them, but knows now not to say they can't come down whenever they like.

It's hard on all us grown kids, but nothing we have ever said helps, so I quit trying. I just listen as my mom will talk about how tired she is or hurting so bad after having the kids there for 4 hours.

There is only so much we can do. I can't imagine how it will effect me when they pass if they do before me, but I know it will be the hardest thing I imagine.

God Bless you, and don't beat up on yourself. You really can only do so much even though you love them. I do understand. We are all thinking of you, and your precious family.

susanep :)

I just had to post back with one las post.

Well the truth came out this morning after mom and I got into a mini scuffle.  She said "I wish it were you laid up instead of me!"  Wow!  I said nothing in reply but wanted to say - "I would never be laid up like you because I'm not stupid enough to smoke for 55 years, not get the diagnostic testing that a patient with cancer should have and not listen to what my doctors tell me to do."

I am very proud of the fact that I have never treated her like she treats me.  I have never denied her illness or her feelings.  She's upset that she's not getting better.  I said nothing.  People with empheysema don't get better, they just slowly die.

Good for you, Lighthouse, for always taking the high road.  With people like your mom, there's no sense in trying to reason or argue your way through to them.  It never works and usually makes things worse.  :(  In your heart, you know the truth.

Jeebus, Lighthouse,

She's a witch for sure.

Hugs

Elaine