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Sjogrens Topics => Living With Sjogren's => Topic started by: quietdynamics on July 17, 2012, 11:33:44 AM

Title: Wiped out...
Post by: quietdynamics on July 17, 2012, 11:33:44 AM
I want to go sit by the river and watch the evening sun turn the sky so many brilliant colors of orange and yellows...deepening  into shades of reds. The water creates gentle patterns, some swirls, some swiggles, ever changing, soothing. I used to have lunch by the river when I worked. Other times there is a small dam I would visit and feel the spray on my face and breathe the mist. The sound so relaxing. Sunlight creating little rainbows...tickling the joyful child within me.

I thought about the river as I left the therapist yesterday. I realized I have not had quality "me" time in the years: I planned to take my camera to the river in the evening.

My therapist has added a med for anxiety. Hopefully, it will help will the domino effect that wipes me out: headache ---> IBS, etc.

Mom is not doing well. She was hallucinating,walking in sleep, slurred speech, unstable. Drove down, took notes, got Mom to Dr.
Ambien can cause hallucinations and walking in sleep...she had already fallen @ 82yrs. (tripped over Max, the Lab retriever)

Thanks to everyone here I did ask Dr. to check her D3 and B12...low; so I will pick them up on my way down. Shots would have required office visits everyday. Her brain MRI came back great. She does have "out with them". Mom kept her pain to herself and of course thought it was cancer (for months).

I called Mom this morning she does not sound good. I think she is not getting the sleep she needs. So I will call the Dr. in the morning and stay with Mom for a few days. She is just over an hour away. Her house will hopefully go on the market in September and she will move closer to us. Usually she would argue for me not to drive down...but she didn't this she must be really not feeling well.

But, it is funny how a "bad" thing, this illness, has given me the time to be there for my Mother.
It is strange how reading a forum has given me information to know how to research and ask questions to help her...thank you.

So I had my own Clavicle MRI (tech said he took extra pictures? ), new Dr on the 27th, new glasses, anxiety med and looking into John Hopkins.

Well, headache is rising so I'll go throw so things in my overnight bag. And wish everyone well. And I will pack my Maybe I can get my Mom to take a ride with Max to the beach if she feel up to it in a few days.

Title: Re: Wiped out...
Post by: quietdynamics on July 17, 2012, 11:48:22 AM

Forgot to say that a large part of my conversation with my therapist was my frustration with treatment, feeling that my body is dissected according to specialty and given drugs, when I am not sure if the symptoms are drug related to begin with.

So I have already cut plaquinel in half and am going to stop it in the hope that the ringing in my ears will stop and perhaps the sensitivity to light, etc.

The fact is that since being Dx'd and starting plaquinel I have more and more problems. Thus, my frustration.

So either it does not work for me or it has side effects for me. My therapist stated "I am the one who knows my body best, go with your gut instinct".
Title: Re: Wiped out...
Post by: slccom on July 17, 2012, 11:59:14 AM
May you have some good times with your mother, find answers and feel peace!
Hugs, Sharon
Title: Re: Wiped out...
Post by: susanep on July 17, 2012, 01:03:05 PM
God Bless you and your precious mom.

susanep :)
Title: Re: Wiped out...
Post by: quietdynamics on July 17, 2012, 01:12:03 PM
Thank you Sharon,

It is better for me, less stressful when I get there.

The situation with my Mom is wrong on a lot of levels. Is is just my brother and I. My brother had ITP and so I was basically pushed aside,with relatives for years. Mom had to be at the hospital giving blood after work (single mom back in the 60' was really difficult and not very much was is in the medical archives). He has not spoken to her since Dad died 4/ 11.. not even a Mothers' Day Card. I called last night as Moms' B'day is 8/1 and her Gallstones, and overall decline. I spoke to his wife and heard a bunch of garbage far they hour the same as me. He hasn't returned my call. I am going to send a card and then be done with it.  Just so wrong.

My brother and I will inherit a lot of money...I tell my mother to spend it.

I am not a mean it shakes my soul.

I am fortunate to have my therapist...she knows me. The anxiety script has been sitting for a while. So I will pick it up now. Packed and ready to go. Last visit Wednesday Mom had to I took a small Strawberry Cheesecake so she could start off  ;)
Title: Re: Wiped out...
Post by: Cricket on July 17, 2012, 01:19:26 PM
Have a great visit with your mom, you will never regret it!
Title: Re: Wiped out...
Post by: Dolly Dimples on July 17, 2012, 01:53:10 PM
  For a moment or two, I was right there by that river with you girl,  back to reality now!
    Shame on your brother at this time in his Mums life, he should learn to forgive and forget,
          but at least you tried.  Have a safe journey and make the most of it.
                               Take care, Dolly x
Title: Re: Wiped out...
Post by: sjenny on July 17, 2012, 02:23:09 PM
What a beautiful lyrical description of the river, reading it brought peace to my soul.  Gentle hugs and prayers for you and your mother!
Title: Re: Wiped out...
Post by: Bucky on July 17, 2012, 02:45:24 PM
Perhaps you could talk mom into going to some nearby river or water to just sit and relax and hear the water too - it might do both of you good.

That would be a great one-on-one time with mom.  Ask her about her younger years and let her reminisce in her childhood or when she was a young adult.

It seems as we all get older we spend a lot of our time going to doctors, and tending to all our medical needs.  Once in a while it's nice to forget about all that.  A trip down memory lane and a change of scenery can make all the difference.   :D

(I too had a brother that never came and spent time with mom - or only came around when he "needed or wanted" something.  You know, he's the one who is going to have to answer for what he did and didn't do in his life.  For yourself, at least you will have no regrets - and that's a wonderful feeling!!)

Enjoy your visit.

Title: Re: Wiped out...
Post by: sass on July 17, 2012, 02:55:26 PM
ohhhh, sweet woman of beauty and grace..Your description had us all sitting there on the bank with those wonderful colors washing over us with the warmth flooding my face and soul.  well, I actually still feel it!

But it is what is inside you that is the real qualities that most do not ever get to experience knowing..Thank you for allowing us in there.  I know what walls of stone you must have had to remove to allow a peak into your emotions.

My sister and I have the relationship as you and your brother...But Dad lives with me.  I do not have to go into the details to tell you, I too am wiped out and I feel your pain and your joy...Without the blessing of being ill, I would be sacrificing this time with my Father..and still it is not enough.  He is 85 and today i saw his exhaustion fall across his face, as a shadow would upon a wall.  It is heart breaking to see and recognize it..

You are a beacon to your mother, regardless of anything else in her or your life!!

 You take her to the water. with your camera, and a recorder  or pen and pad.  Ask her to tell you what she sees in the sky and will be what you remember the most.  These days of what should be, what was told would be, the days of Gold will be there- to whisper reminders of who we are...

I hope and wish for you, some rest and peace with your visit!!  My Prayers for Your Mom and You and Max!!!!      ~sass~
Title: Re: Wiped out...
Post by: iraisin on July 17, 2012, 04:13:42 PM
mmmmmmm. thank you.

Have a blissful, beautiful time. Absorb it all like a dry sponge sweet lady.
Title: Re: Wiped out...
Post by: jazzlover on July 17, 2012, 05:28:32 PM

But, it is funny how a "bad" thing, this illness, has given me the time to be there for my Mother.

Same thing happened to me. I had 7 (mostly) wonderful years overseeing my mother's care in an assisted living center. I was already disabled, so had time to do this. Fortunately I was not as sick as I am now. I took her to local live shows and other tourist attractions. It was great!

Those memories are precious to me.

PS... Suggestion... record memories she has. You will be grateful to hear her voice once she passes on. I wish I had done more. I have a recording of how she went by train from TX to NY to marry my dad when he was in training to go overseas to WWII. Pretty special story.
Title: Re: Wiped out...
Post by: eyeamdry on July 17, 2012, 08:59:30 PM
To everyone who still has parents living, please talk to them and get the history--as someone above said.  I know so little of my forefathers (and foremothers-such a word?) that it's sad.  I only had one grandmother and she died when I was 7.  We didn't visit her much so I have few memories of her. 

My father died when I was 15, so there wasn't much history there.  When you're a teenager, you just don't think of things like that of course.  My mother passed when I was 25 and I have fairly good history of her family and background.  Recently, as our family is aging, my cousins have begun to pass on and I've lost two of three siblings recently.  So, please talk to your grandparents if they are alive, or your parents.  I know it can be difficult if they don't want to talk, can't converse etc, but get what you can and write it down for your kids and grandkids.  Lucy
Title: Re: Wiped out...
Post by: quietdynamics on July 23, 2012, 08:59:21 AM
Hard to believe almost a week has passed. 

Mom figured since she got her blood results on the phone she did not need to keep the appt on the 19th...LOL. Dr. added anti-depressant, along with Vit D3 and Sub-lingual B12. I added Melatonin and happily the assistant gushed about how she loves it! Dr. told Mom to sit outside for sunlight and I had a chat with Mom about siting in her "dark" bedroom watching TV. She has a wonderful greatroom with sunlights (with films). The weather was hot and humid, but I did score apricots. Made Mom a light ratatouille and a hamburger for dinner.  Mom does not look her age and gets hit on when grocery shopping...wish she had a friend.

I got lost in the downpour trying to find Target for Moms' script. Since I was there I picked up LED night lights so now her open concept hallway looks like a flight pattern  :)

Mom is talking more openly about our trip to look at a lake community to move to and hopefully buy one house not two... we will see.

Friday I crashed @ 5:30 and slept until 3:30am Sat, let Max out and woke again at 9am...must have been all that Dr. Phil, the Waltons, ....but, I did like "Wind at My Back and Bally Kiss Angel"etc. Drove home at noon on auto-pilot and crashed for the rest of the day and into Sun.

Not sure if I will drive back down tonight or in the morning for Moms' appt re: gallstones and procedure. Probably tonight. Hubby has his appt tomorrow, otherwise he would go with me; and I had an appt with a new Dr. on the 27th.

Still haven't gotten my glasses for just using my prescription sunglasses that are old and can only drive in the daytime.  And I haven't gotten my list together for the new Dr.   And where is my daughter???? And our driving lessons???  It is our hot babes time!!!
Title: Re: Wiped out...
Post by: iraisin on July 23, 2012, 09:56:23 AM
It sounds like you had a really nice trip. I can tell you love your mother so deeply, it is beautiful and soothing to read.

I am happy for you.
Title: Re: Wiped out...
Post by: quietdynamics on July 23, 2012, 03:36:48 PM
I spent most of my younger years with my wonderful loving aunt and with my "little" english grandmother. My aunt in the country with flowers and 5 children, wonderful scents of homemade foods and family gatherings. Until, I moved away I always planted flowers for my aunt on Mothers Day. My grandmother in NYC on the 17th floor, we could see the Hudson River and at night the George Washington Bridge looked like a diamond necklace stretched across the black velvet night.  I sat at her feet as she sewed on the old singer playing in her button box. Her left ring finger was missing to the second joint... where it was caught when as a teenager she sewed uniforms for the soldiers in WWI in England.  My best b'day present was always a homemade tin of my grandmothers brownies and the safest places was in her arms.

I want my Mom to know she is not alone and have some joy. I do not want her to have fear of Drs. She was with her parents when they passed, both of cancer, much younger than she. And she did feel guilty that she did not bring her husband was fast. But, he was 92. But, it started after he had heart surgery....then 20+ years later of not going to family affairs.
 Love?  Maybe we will get mother spent her life pushing people away...Think of the TV character "Maude" she actually was followed in stores because people thought she was Bea Arthur. T  At this point I suppose it is more...

When I stayed over I hid my meds, I never told her what was really happening until about a year

Funny the twists in life.
Single Mom of two, met a wonderful man, even talked him into getting a motorcycle so we can go adventure. One year later falling over with fatigue and vertigo,barely walking. Inside a hamster cage. But, unlike my Mom...I encourage my honey to join a motorcycle group. When we move I picked an area that has golf so he can make golf buds....No point in having it consume more than me.

Goal...vertigo is gone...get on that motorcycle !!! Bought a leather vest ....maybe just a push up bra underneath??? :o
And a trip up to Woodstock, NY Family is visiting from Hungary.

Title: Re: Wiped out...
Post by: iraisin on July 23, 2012, 04:44:41 PM
get that bra and ride girlfriend!!!

I didn't grow up with a "loving" mother. She's in a nursing home now. She had 12 children, none of us are able to care for her like she needs. She has diabetes and is blind and crippled. She's mellowed now that life has humbled her quite a bit, and it is easier to visit on the phone w/her now.

I'm glad you're "getting" there with her.

I wonder what kind of old lady I'm going to be. My son tells me I'll be sweet, but if my bones keep creakin' and achin', I'm afraid I might turn him into a liar.  ;)

I do hope you enjoy your family reuniun. It really does sound like a nice trip.
Title: Re: Wiped out...
Post by: quietdynamics on July 23, 2012, 05:33:26 PM
iraisin....I better make sure that push up is steel good pot hole and I may get knocked out!!!

Woodstock excursion is Hubbys' sister, she is a pip. She was doing something like Aura reading with therapists in schools in Hungary. They give Vit b-12 shot in the fall to school kids.
She "read" me and said I would be fine? LOL...I bought her a silk boho wrap dress that can be a skirt too. Should be fun. She talks to spirits who have passed....Think you should have done that here. I think she is into parallel universes now...Ever read about Einstein, the Man???  Einstein states 11 dimensions, some theorists had speculated schizophrenia see more than we do??? 

Husbands brother fell off a balcony in his mid 30's paralyzed from the waist down...numerous surgeries, serious ongoing infections, grafts...lost his family, job...I have no complaints. Hope to get him out for a wheel around the town or over to Kingston. Last two years I wasn't able to drive... definitely looking forward to seeing everyone. Maybe I can pry my Mom out for a ride...we will see.
Title: Re: Wiped out...
Post by: iraisin on July 23, 2012, 07:18:00 PM
HA!  Steel reinforced...funny. Is that for the top (cage) or the bottom?

I hate to hear all of the troubles, it seems everyone has something, beit health, family, past...

I hope you do get him on the bike for a whirl.

Maybe have her check his aura first, make sure it'll be okay. ;)

Have a great time and enjoy yourself, and everyone else.
Title: Re: Wiped out...
Post by: quietdynamics on July 26, 2012, 07:11:22 PM
Moms' appt with the Gastro Dr. re: Gallstones ended with an unwelcome addition:
Highly suspect Aortic Aneurysm.I picked up script for test scheduled on Monday.

She is not eating well at all. I have her filling in a food diary and eating small meals that are higher in calories. She is really weak. But, we have been having breakfast on the deck in the early AM.  Just mid May she was fine and had made a dinner for company!!! Now she could barely stand last night...

I had to come home tonight because of an appt I have been waiting for 2 months and which I offered to give to my Mom...for a new Dr. to see her. My son is near Mom and called her after work and will go there tomorrow.

I woke at 7:30 with a headache let Max out and then after Mom had breakfast and Vits/med. I crashed until 11:30....groan. Took my 2nd daily Cymbalta early so I could drive home @ 2:00.  Really hoping the Wellbutrin kicks in for Mom soon...she is soo  discouraged.

I know she was not aware of how tired I actually get. I tell her so what?? We do what we need to do and then in the heat of the day we take a nap.
Title: Re: Wiped out...
Post by: iraisin on July 27, 2012, 05:33:05 AM
As heartwrenching as the diagnosis is, you caught it and they are going to work on it.

I have had a lot of family members (uncles, aunts, grandparents) that didn't catch it and fell victim. Please do not let her exert herself in anyway. My uncle passed when getting up from a chair with one he had in his brain.

A woman at work passed while going poop in the bathroom from one as well.

Think about all the daily things that may cause even a slight increase in strain and mitigate it until she can have her surgery. Have her diet consist of foods that will be easily passed, make sure she has help getting up and down, advise her to take her time with everything she does, especially from going from a rest position (like getting up from a nap) to motion.

If she's weak, this may be a good thing as she won't try anything strenuous, but she will still need to be watched with great care.

I will keep her and you in my heart and prayers.

Sweet love heading y'alls way.

Please keep us posted.
Title: Re: Wiped out...
Post by: sass on July 27, 2012, 08:06:48 AM
Hopefully, things improve for you and your Mom quickly.  I worry more about you though. You really do need a little fun!  Easy for me to say, but the truth.  Find that upperwire, lower wire, bra, ace bandage them suckers or whatever it takes and hop on the back of that Bike and ride like the wind...

Sometimes you have to go against the grain of what is expected of you and need.  And you my friend, need some R&R!  I know how hard that is,  I have my Dad living with us 24-7.   But I will go to my room and shut the door to have some me time.  Earlier in my life I would have never considered having "ME" Time, but I realized how healthy it is for me to find time for it.

My mother and I did not have a good relationship , nor my sister.  My mom mellowed with age and she died before we were able to complete going full circle.  But I know we would have and that is enough for me.  She was fairly abusive and very demanding.  She and my sister are the same people I think often...But when she died, we already had got close.  And I would love to have her back now.   Hang in there and let us know,    ~sass~
Title: Re: Wiped out...
Post by: quietdynamics on July 30, 2012, 05:05:52 AM
Leaving soon to drive down to take Mom for Ultra Sound to check out Aortic  Aneurysm.  Tomorrow is Moms Birthday 82....Yeah. Brother never called. Maybe tomorrow?
Give a prayer it is small and manageable. Mom has been eating a bit. So that is better and she sounds better.

I can feel my stomach cramping already....well, then just breathe and dicyclimine (sp?)

Gotta get to all talk to you in a few days.... :)
Title: Re: Wiped out...
Post by: Katybarstool on July 31, 2012, 01:39:48 PM

Prayers for you and your mum. Please let us know how she is getting on.

Title: Re: Wiped out...
Post by: quietdynamics on August 24, 2012, 06:12:11 PM
August 24th...and my mother is worse physically and mentally now.  She was bounced around so much I had to get an appt book to record it all!!!! And finally INSIST she be admitted into a the hospital, she got to the point where she could barely stand on her own and was only eating 4-500 calories/day. Her regular Dr. was on the covering Dr. upon seeing her immediately sent her to the ER.

Her simple gall stone issue was now complicated with an infection as well ( this while being tested for aneurism, an endoscopy, and being scheduled for a colonoscopy? gee....the specialist didn't notice she was no longer walking ...but scuffling, unsteading and mentally confused????? He thought she could tolerate a colon cleanse???? )

IV, Blood cultures, IV antibiotics ----> remove gallbladder ---> stable-----> rehab ----> OMG....left laying there not eating or drinking UTI, fell out of wheel chair (left alone) hallucinating for 5 days. We were told in the elderly that was normal by the nurse! Sat call Dr. "I want Mom in HOSPITAL!!!!" He says we can do test from rehab. ME: HOSPITAL NOW!!!!  At hospital get rid of Dr,she has had for years  and get back the covering Dr. who found infection..... poor MOM 250 ml/hr IV for dehydration and in neuro ----> MRI , no stoke. Calcium high, but not parathyroid. Stabilized ----> new rehab as of yesterday.   Admittance: they went over every inch of her body and noted redness on tush from laying in bed and that she would need to be turned, mental acuity test...very thorough.
She showered today, dressed all with assistance, and ate some. I was able to have Max , her Labrador visit, her eyes are glassy and she hallucinates. Neuro still testing. Maybe, endo next.

A few times we thought she was dying. If so it will be at home.
 Mom now thinks she is in an insane asylum, for some reason she thinks a baby died today and she asks about people who have passed, her sister, aunt...and that is common for end of life elderly. I wish I knew what to do. She was exhausted by 4 today and I put her to bed. They moved her near the nurse station because she threatened to throw the phone out the window last night and yesterday she was nasty and almost growling at me to leave her alone.
I remember my stepfather got nasty, totally out of character for either of my parents just before he passed.

My Dr scripted Clonazepam low dose...good grief another drug. I'm taking Max for some walks in the early AM, the homes here have beautiful landscaping and there is a cul-de-sac, just went into the kitchen and lost control of my BM ( I haven't been eating right, my fault...just yogurt and fruit.) Stress headaches...I need to pray out loud instead of internalizing, write it down and turn it over.

It was the 1st rehab that has me so upset. I will file a complaint when the waters calm. Interestingly, the Dr. on call at the ER has "pull"  he was shocked at Mom's condition, had just signed on with the rehab and know the new he was going to personally speak to him.  He must have been touched by what he saw because he went on round with my Moms new DR, of record the next morning.

Dr. is considering a spinal tap on Mom. But...when is enough ...enough?  She was sooo healthy just 2 months ago, she tired me out shopping for a new umbrella for the patio table.

A heartfelt thank you to everyone .....your posts have taught me how to advocate for my Mom, and myself.
Title: Re: Wiped out...
Post by: iraisin on August 24, 2012, 07:03:23 PM
My heart is breaking. I know yours is too. I am so sorry for all that you are going through.

You're a really good daughter. God bless you.
Title: Re: Wiped out...
Post by: slccom on August 24, 2012, 07:23:07 PM
If she is shuffling when she walks, have them check out normal pressure hydrocephalus. Put in a  shunt, and  they should fix it, if that is what it is.

Hugs, Sharon

Title: Re: Wiped out...
Post by: irish on August 24, 2012, 10:05:57 PM
I am sorry to hear what a go-rou9nd you have had with your Mom. This is the way it is though when our folks get old. It is so hard to get their physical ailments taken care of.

Be aware that many drugs can cause hallucinations in the elderly. If she has had surgery and taken some drugs that she ordinarily doesn't take this can set off a host of cognitive issues. I worked geriatrics as a charge RN for 25 years and the elderly (now that I am one!!) just can't take the meds.

My dad ended up having hernia surgery when he was 78 and the Demerol caused a terrible confusion for him. Also, the anesthesia used can make people confused. One an older person gets the hallucinations, etc., it can take a long time to recover. Has your Mom had a psych consult. Sometimes it helps to give them low doses of the antipsychotic meds to help decrease the hallucinations. Play it slow and easy is all I can advise. Sometimes doing nothing is the best thing you can do for them. I'll be thinking of you. Irish
Title: Re: Wiped out...
Post by: susanep on August 24, 2012, 10:54:59 PM
I am also thinking of you. I was thinking of my mom reading this.

 Before my mom passed in March of this year, I was down there one day, and she wasn't feeling well, and dad said she had a bad night, and mom ask if I still lived over there. I said, where mom, she pointed somewhere, and it caught me off guard. I said, mom you know where I live.

Bless her heart. It was the first time she didn't know something for a bit when I was talking to her. It was me though that had  the hardest time with that. Dad just stayed quiet.

I guess she had already had a mini stroke, but for the most part seemed no different to me. She was falling more, and dad stayed inside much more to be there. He is an outside person. She was almost 77 when she passed.

I hated having sjogren's and then finding out lupus with mom so sick, and I knew she was getting weaker, but a part of me was in denial.

I would talk  to my dear husband a lot about when his parents passed, and told him I didn't know how I would face it with mine.

Now I do all I can with and for my dad to the point I have had to stop myself awhile and relax. Right now I am so sick that isn't a problem. lol..

I call dad, and when he hears how I sound right now, he doesn't really want me there either, but he always wants to know how I am, and gives me some sweet fatherly advice.

Funny how when our parent/parents aren't here we just wish we could hear all that advice we once complained about. hehe....yet that is human nature I am sure for most generations.

susanep :)

Title: Re: Wiped out...
Post by: ktfabian on August 24, 2012, 11:18:09 PM
I'm so very sorry for what you and your Mom are going through.

It might be good for them to check her hydration and whether she's getting enough food. I know that sounds too simple. But my husband's great-aunt went through something very similar to what it sounds like your Mother is experiencing. She'd lost her last sister, there had been 12 of them when they were younger, and she stopped eating, or ate only a little bit. She finally landed in the hospital after falling. She became very confused, speaking to people long dead and of events that none of use were familiar with. We really thought that we were going to lose her.

Somehow, they finally figured out that her extended lack of meaningful caloric intake and severe dehydration had thrown her body and mind into this disconnect. I'm not sure if they put a temporary feeding tube in or not, as this happened 10-12 years ago. But they finally got her back on track with food...I know she drank supplements like Ensure or perhaps something prescription. Another cousin came and stayed the summer with her until she was finally back on her feet.

I don't know if any of this can help your Mom, but what your describing sounds so much like what Aunt Olga went through. We really thought we were going to lose her, and it took them so long to figure out something that seems like it shouldn't be that hard.

You and your Mom will be in my thoughts. As hard as it is, please remember to take extra good care of yourself. You won't be any good to either yourself or your Mom if you end up getting knocked down completely with all that's going on.

Take care,
Title: Re: Wiped out...
Post by: quietdynamics on August 25, 2012, 08:35:01 AM
The Dr. who was covering for the PCP, when Mom was crashing and put her in the hosp did more extensive tests. This after a month of gastro bouncing, while she developed the first infection in her gall bladder. Surgery was on 8/10. He noted that her blood calcium was high; possible parathyroid. He brought the level down prior to surgery and with the IV she looked and acted so much better.

8/13 Rehab where she was left to lay in bed with no assistance that we saw and fell on 8/17, and we were questioning staff all along.
after surgery, in the hosp she was able to get to the bathroom ... in the rehab she was put in a pull-up and dumped much dignity in that???...then we insisted she go to hospital.

Mom was admitted on 8/19 re-hydrated  250 l/hr and calcium high again, after 4 hours of treatment she was sitting up, more alert, still disoriented, at this point. And we changed Dr. of record. 8/20 neuro called in for MRI. CT had already been done. Full body scan was done for bone density? UTI corrected. 8/21 Neuro Dr. came in come exam and we were able to give him info of how independent Mom was 2 months ago. He went out and returned with some chocolate mini bars for Mom...blew me away. Mom was able to walk from bed to door and Hosp had physical therapist working Mom.

Did I mention her last Dr. was treating all of these symptoms with Vit and low dose antidepressant/ no follow up beside gastro bouncing? 

8/23 Mom in different more professional rehab. 8/24 Dr. Lempel will consult with Neuro and bring in Endocrinologist.

I am going to talk to Dr. re: Primary hyperparathyrodism. The symptoms sound so much like Mom. I get scared that I can see her heart pounding through her sheets when she is laying in bed  The test showed no aneurism, but, I place my hand there and can feel it just at the sternum.       The 3hr. test sounds more sensitive than what was done.

Just so that all of you know Mom is not in any pain.

For a moment I even wondered when her thinking was scrambled, looking for words, difficulty concentrating: she has always carried hard candies with her, has flaking skin on her face get worse with stress ....if it was SJS. She has some autoimmune issues. When I was initially Dx'd I asked my Mom to have her Dr. check her ANA. Even had my daughter done for a baseline. But, that was when I was new and now I now that is not the end-all litmus test.

Again, we are blessed that my Mom is not in any pain and is in now in a very professional and attentive facility.

Title: Re: Wiped out...
Post by: quietdynamics on August 25, 2012, 10:16:39 AM
Before I get ready to go visit Mom...just wanted to post some things I have learned that may help others. Although, clearly this is new, emotionally and physically draining....I prefer to focus on the positive;that being, what has been learned.

Yes...a die hard brewed coffee drinker will drink instant coffee. I was too tired to stop to buy coffee on the way home. Folgers is not bad!

Stress Flares:
Lidocaine Ointment USP,5% has been invaluable to control pains. Ex. woke up right wrist felt sprained.
Refresh Optive Advanced. Eye drops with a soothing gel consistency. Ocular Rosacea (SJS connection) has been daily finally got to pharma.
Fresh Fruit
Water, water, water, and

Naps and downtime....drove nowhere in particular and enjoyed the view. Could not go to the beach, too crowded. But, will go get my daughter this week and bring her down to go take photos and invite a friend down for a visit. Enjoy Max, brush him, walk him, and baby him, he is 11 years old.

Alex has been trying to relieve me...and send me home. I went home and crashed for 3 1/2 days...when Mom was in the rehab. Alex went everyday @ 11 AM and 4 PM and questioned nurses. That was when I came back and saw her condition (not rehashing here).

On a serious note: we should have had a power of attorney in place. I am the executor of Moms' estate. Something to think about regardless of age or condition of anyone with finances.
But, now bills are due and only her name is on her accounts and she has a lot of money in them.
What I learned: in NJ the bank has a form that will give me "temporary power of attorney" over her accounts. No attorney. Mom signs and form is notarized.
Here is a link I will use for myself from the Academy of Neurology as a guideline:

We are no longer quasi-tech-neaderthals: Alex took me and we upgraded to smartphones and wi-fi so now I can connect with YOU, my support group and understanding friends....sincere thank yous.
The cost made me shiver...

My Mom's situation has re-lit the fight in me, and shown me that I can push harder than I have in essence I was being dragged down/inward by the combination of my own situation. Living this fight has shown me that I can manage more. Yes, I crashed daily with a nap...but, then I did more. So I need to better manage my energy to achieve a better quality of life. And it took Mom to show me this. She at one point said when we talked about moving to the lake community that she did not want to be a burden...and I said to gut feeling....Mom I think you will be helping me (she being so strong and independent).

One way or the other this episode will run it's course and WILL have a happy ending. Of that I am confident.

Title: Re: Wiped out...
Post by: Katybarstool on August 25, 2012, 01:10:04 PM

Your positivity is inspiring. I'm in awe of all that has been happening to your mum and the way you have dealt with everything.

Sending you hugs and prayers.

Title: Re: Wiped out...
Post by: EllaBlue on August 27, 2012, 05:33:05 AM
Hi quietdynamics:)  I am fairly new here and missed your story.
I love reading "how" you describe things like sitting by the river.
I took care of my mom back in 2004.  God knows I felt 100 percent better than I do now. I had a man that I was engaged to, was the love of my life and sadly he left me for a MUCH younger woman. God has a plan and I believe that this was best for me long term.  What I mean is I am very accepting over time.
I loved my mom and I adored and appreciated the time we had. I wish she were here to do it all again despite the pain and how difficult it was. She suffered from alzheimers and eventually cancer. No-one else bothered......BUT I get the memories right?
Sorry I got distracted.  I hope you are feeling better and I wish ALL good things for your mom!~!
Title: Re: Wiped out...
Post by: Gayle on August 27, 2012, 08:43:21 AM
Hi Quietdynamics,

Hope you have a better week with your mom and you continue to get rest as you can. Sending up prayers and a warm soft hug for you!
Title: Re: Wiped out...
Post by: quietdynamics on August 28, 2012, 10:24:43 PM
Mom is still not eating, or drinking.
I took in some watermellon and fresh whole milk, once even sugar laden Minute Maid lemonade...just sips and a bite here and there.

Yesterday I pushed her in the wheelchair to the office to see the notary and to have her sign some papers. The admittance wanted me to sign some papers, but, I pointed out that Mom had signed her name for the bank and perfectly capable of signing her own forms. I had gently, lightly styled her beautiful white hair and put some blush on her cheeks. Where did those bones come from?

Afterwards...I told Mom to show me around. I did not want her back in her room. We saw the courtyard. It had rained and there was a Mamma Duck with Babes near the glass door for us to watch, we wandered the halls a bit. Then she was so tired we returned.

I stopped in Lowes and found some Yellow Coreopsis to plant for her ...instead of Mums. I was so happy. Reduced to $1 and healthy.
Figured she would forgive me for the Magnolia tree I cut back....into a bush   :-[

I have been ignoring/ daily stress headaches...while they were "do able". Today I got out the 3 Advil. This is the type the Topamax does not touch. So I did not get to the Rehab till 5...and Mom was not well at all. Her eyes were glassy, she could barely open them to look at me...although she knew me. She told me she was cold.  Temp. 99.3

Dear God ...she looked so much like my step father before his passing. But, Dad was in his 90's and had just then developed prostate cancer. 

My mind is screaming. I get the nurse...questions....Please call the Dr....My mother is abcdefg....OK tests ordered for the AM.
Dehydration? Calcium Again? I tell the nurse: you know ongoing fluctuations, high calcium can cause cardiac arrest. I pull back the covers and show her my Moms chest and you can see her heart pounding. Her heart is not enlarged, I tell her. Hope she remembers all that if I haul everyone into court.

Hey want to add in Kidneys? What is being affected by all of this? Long term damage? Malnutrition? Another UTI?

Would they let this happen to a child?
My brain is 82 yr old sick woman has not eaten or drank in how many days?  Mid July! So basically, am I correct in that periodic IV's and muscle are keeping Mom alive? And she is doing physical therapy in the morning? And taking folic acid, small cup of juice and hospital size sugars.

What do I do? I need to make a list and hit on key items when I speak to the Dr., and I want to speak to the Neurologist (Alex is going to do that part).

I am going to bed now. 

Title: Re: Wiped out...
Post by: iraisin on August 29, 2012, 05:11:51 AM
YOu are such a warrior!!!!

My heart goes out to you QD. Stay dilligent and strong.

I'm glad you are finding your own improvement in all this and discovering valuable lessons to help you thru your life with SJS. And thanks for sharing that with us like you do.

I pray today brings improvement and peace to you and your family.

Hugs and love to you.
Title: Re: Wiped out...
Post by: quietdynamics on August 29, 2012, 11:44:40 AM
Thanks iraisin....

"discovering valuable lessons to help you"  99.9% of us have learned from our own experiences and this is what is helping me stand up for my mother.

I had learned valuable information when I took a night course in Special Education Law.
And when my own daughter was having her medical problem and being pushed to was her thyroid...I called in Crisis Intervention. LOL.

The medical people said, OH Crisis has been called in! And the woman, her name was Jessica, said yes, the childs MOTHER called us because her daughter was not receiving proper medical treatment...then she took notes. The three of us would then go out for lunch. Crisis Intervention said I was a first for them.  Crisis Intervention was an invaluable resource.

It was just after that when my own body finally crashed... being in a rural area of NJ then, it was nearly impossible to find specialists who would accept low income state insurance. I was scraping by ...just myself and the two kids, a student loan for night courses, while I substitute taught during the week and did the equestrian programs after work, weekends, summer...then I remembered from the same course that "entities" that receive state/federal funds have to accept the insurance so I got into Robert Woods Johnson and was finally,Dx'd.  After, like my daughter being put on anti-depressants and a pat on the head for a number of years.

So we learn experience. The Rheum @ RWJ told me about this site and I learn here... and now I help my Mom. And by posting hopefully help another. headache today. Major relief. Drank copious amounts of water yesterday. Did some laundry...only have a few clothes here...mix and match...but, tired of wearing them. Wear my hair up, then down, french braid, quasi-twist.

Finally tried the Clonazepam ,025mg last evening. Had the script for 2 months and was leery of it. But, my chest felt tight (again), happened, noticeably on the way into the hospital last I did some slooow, deeep breathing, walked in and the AC felt good.
Opened the foil and it was a powder? Wicked thought...anyway thought I had broken the pill. Haven't opened another I don't know.

Off to see Mom...Maybe a fast food Milkshake will be soothing for her today. I dip a Q-tip in her favorite perfume, wrap it and take it to her.

Have a great day. 

Title: Re: Wiped out...
Post by: Gayle on August 29, 2012, 06:22:20 PM
YOU are amazing.... big hugs!
Title: Re: Wiped out...
Post by: quietdynamics on September 08, 2012, 09:35:29 PM
Mom was admitted to the Hosp again on Sun. 9/2..I am so relieved.
@ rehab I reported to the nurse that her feet and ankles were swollen and she had too much pain to even stand on wed. 8/29.
Kept at them and nothing. Visited Mom on Sat and she was sitting in Dayroom with feet down? Questioned nurse and she checked and reported there was nothing in notes re: swelling or the skin deterioration at tail bone. One- on-one chit-chat with supervisor.
"Shall I pull up the car and take her to the ER myself?" Etc, Etc.

Sun. ER: Deep Vein Thrombosis, both legs, groin to her knees, and clots in her lungs. IV, med to bring down calcium and heparin.
CT Scan shows small mass in right lung. Other test node on adrenal.  Blood calcium off.
Mon. pick-up Moms' personal items from rehab and learn from roommate strap sandals were shoved on her 2X's normal swollen feet.

Wed. MRI w/contrast of brain is clean.  No tumors.
Thurs. filter inserted into the vena cava to prevent pulmonary embolism. Lung biopsy ---> right lung collapses some, tube inserted.
Fri. We get to hosp @ 7:30AM to talk to Dr.He mentioned chemo, took his time and is very thorough and caring.
Sat. took tube out.
Sun. Mom "out of it" probably calcium is off again, this can be manage with med. She thought her mother long deceased was my mother. I assured she was my mother as she was the only one who could put up with me..LOL.

I had the dietician change her food to chopped as Mom was so weak/spaced. It seems to work better and she ate 1/3 of her meal, all the cranberry juice and the strawberry ice cream. Mom did good.

We are hanging..waiting for the Dx, so we will know what to do that will be best for Mom and honestly for myself now as well.

I need to get back to my Drs. who are on hold, and have been kind enough to fill scripts without seeing me. I had started some tests that need to be finished. I lost a lens in my glasses and it was not fun driving home from the ER @ night with prescription sunglasses.
One day I slept a total of 15hr. and the average is now about 10hrs. And my stomach and chest are not happy.

Wed. before I left for the hosp. my son called. His girlfriend had blood in her mucus at work and pain. So I went and picked her up (got lost and went in circles and loops, through a flooded section) and took her along. Oh, and while lost the Hosp. Social Services called and wanted to make arrangements as to where Mom is going upon discharge.. hey can we get a Dx first?
Alex drove down ..I was on a roll in the ER, told them you guys are so good I brought you a new one! Small Hosp. I could have been a Youtube comedy. Later, Alex told me he was actually afraid I was going to have a nervous breakdown. But, he did admit it was funny  ;D

Stress therapy: Pet Max, I put my Moms' robe on the floor for him to sleep on in the room where I am staying.
Stopped in Lowes again.. some more reduced perennials and two small lilacs that the sales man reduced to $1 Whoa. Happy dance.
Picked up some top soil and black mulch that I am driving around with in the car. Too heavy for me to lift.

Oh ..and I have a new hobby. There is a really awesome spider out on the side of the house, where the sliders open to the deck.
This thing is amazing!  It must be two inches wide and where it's legs meet the body it is red. I have watched it spin it's web and now the web is at a 45 degree angle from the cedar siding.

I have a cousin who is going to advise me on medicare. Our goal is to get Mom home. My cousin is in Social Work and has offered to "clue" me in.. I will share what I learn. I cannot find "the power of attorney" paper, so I may have to call the attorney who did the will..just to get things in order to handle finances for aftercare.

I think this may be more stressful.

So far I am convinced taking the aspirin at night has helped me. I think with the chest tightness..I have to remember to breathe. Gosh, they drive so aggressively down here. I was waiting for traffic to move going north and wham.. car came into the south lane..3 car accident; and the man who shot out from the hosp emergency/out-patient exit had a child in the car. What was the hurry?

Well..I know you hope that we have answers soon, so that we can do the next best thing for Mom. And Alex and I can get some rest.. and a date. I want to take him to the boardwalk, especially now that everyone has gone.

My best to everyone.

Title: Re: Wiped out...
Post by: slccom on September 10, 2012, 11:29:03 PM
How was your day? Better, I hope!
Hugs, Sharon
Title: Re: Wiped out...
Post by: quietdynamics on September 11, 2012, 05:06:18 PM
Thank you Sharon... I am depleted.

Mom is coming home. I did not go to the Hosp. yesterday. 1st time in a month?.. seems we have been on this journey longer.
The Oncologist called. 

I did not go yesterday,Mom was not lucid due to the high blood calcium and Alex went. 
When he left the tears of reality, finality. And then, the resolve to be grateful for all the present positives: Mom is not in pain, when the Ca+ is brought down she is lucid and when it is higher her "hallucinations are pleasant", even the fact that the house is a ranch is a positive, her Dr. is also an accredited Hospice Dr. and Alex is my rock.
I started "nesting"for Mom's homecoming , shampooing the carpet, vacuuming, washing the window screens.. in a futile effort to protect her affected lungs. Silly, but, I want it fresh and airy for her. She has said she wants to sit out on the deck with Max. The hosp. bed, lightweight wheelchair, etc will be here. Alex will meet with Hospice tomorrow. I need to go home and my eyes checked and driving glasses made.

There will be no Cancer treatment.  Just amazing that she was so physical the 1st part of July.  Dr. prognosis is 6 months. But, today she has fluid in her lungs and her WBC is high without fever.

Medicare covers 8hr x 3 days home care. I told Alex we HAVE to go out at least once a week on a date. I will see if the local library will let me join. 

I have told family that they are welcome to sleep over and "live" the day with Mom.  I am so grateful she goes in and out of being lucid..I just do not want my mother to be afraid. When the gastro Dr. said aortic aneurism or cancer, that scared her, she was shaking with fear and we talked and I laid down next to her and let my Mom know I would be there for her.  And so we are.

Title: Re: Wiped out...
Post by: slccom on September 11, 2012, 06:19:56 PM
 :'( I'm so sorry. Your mother will have a peaceful passing, full of loving and being loved. And she will always be there for you!

Hugs, Sharon
Title: Re: Wiped out...
Post by: quietdynamics on September 21, 2012, 06:21:52 AM
Mom has been home now one week. I am doing hospice in her home. It is a ranch so Mom is in her bedroom with her own blankets and scents. And much easier on me.

Through Hospice I ordered a lightweight wheelchair and a hoyer lift. So far Mom has been able to have breakfast at her table and go out on the deck, Alex helped pivot Mom onto the chair, only once. I also requested a physical therapist, since Mom had basically been laying in beds for 4 weeks and not using her legs, stomach muscles. The therapist went over the hoyer lift with me so I hope to get Mom in the wheel chair today and out on the deck.

An aide is coming Mon-Fri, two hours a day. So I can get out. Originally, it was going to be less. I explained briefly my loss of right arm strength.. and I guess this is one case "but, you don't look sick" does not apply.. I look drawn and tired. Forgot my makeup when I left my home to come back to meet the ambulance..LOL.  Another reason, I post here Do NOT wear makeup to your Dr. appt. Let the Dr. see your pallor, etc. (and then put it on in the restroom or car after the appt)

So far Hospice has had supplies/equipment delivered and set-up, nurses, aides, social worker, therapist, chaplain is coming today,FedEx delivered meds, hospice volunteers have called..that flurry of phone calls and answering the door, getting Max each time has been more exhausting than taking care of Mom.  The "quiet" is in my posting name for a reason. Mom heard a doorbell ring on a TV program, and told me NOT to answer the door.  ;D

Thurs. Mom and I did have a quiet day.. I laid down next to her till she fell asleep. The aid came and gave Mom a full washing and shampooed her hair.

Alex did have to go home and I did tell him to stay there awhile. I needed to be able to freely feel my own emotions as they came. I did not want him to get overly concerned about me. Before he left he did the food shopping and brought me chocolate and treats for Mom.

Being here is infinitely less stressful and taxing than the rehabs and hospitals; of course at that time we did not have a conclusive Dx.
And  my brain/emotions were spinning:setting off symptoms. Sitting in the ER next to those beeping monitors with a headache.  So basically, coming back here and crashing. I did lose 6lbs.

I have been learning how to set limits and will post them later in the hope that if one of you has to take this journey or if one of your loved ones becomes your care taker my experience may give insight.

Title: Re: Wiped out...
Post by: iraisin on September 21, 2012, 10:08:42 AM
My dear friend. My heart is filled for you and your mother. You are doing a most beautiful thing, sweet lady. I'm so overwhelmed reading your plite and admiring your strength and love resolve. What an honor to witness this of you.

Bless you, over and over again.
Title: Re: Wiped out...
Post by: quietdynamics on September 28, 2012, 07:55:28 PM

How bizarre.

My cousin took the bus from NYC to the shore; she is going to stay with Mom Sat and Sun, so that Alex and I can go to a Celtic festival.

Alex met her at the bus terminal while I took Max, 11yr old lab to the vet. He has been having trouble getting moving in the morning. I threw a ball and he took a nose dive off the deck. Poor guy skinned his chin and limped. Then a neighbor came over a few days later and threw the ball and Max has been hobbling about ever since.

With people here I was able to get Max to the vet. Nothing broken and not arthritis as I had thought.

Max has cancer, lung and nodes.

This whole thing just paralleled Mom, going to get checked for one thing and coming home with something not expected, suspected.

I told the vet, after I babbled disbelief,"I am taking care of Mom, I can take of him too". He like Mom, has no pain. So Max is here with a script for tramadol. And so it goes .. 

Just learned the house with well water is within one mile of a cancer cluster; childhood leukemia.

There are a number of underground streams and loads of wet spots here/ Mom had to do mold removal this summer in half of the basement that is soil.It is the shore area with a low water table.

I am thinking I should buy bottled water? I did wonder when food shopping why people bought bottled water in the gallon jugs.

And it was mentioned to me by a nurse that cases of West Nile have been coming in.

We had decided that I would only stay here til' the mid to end of October before I learned all of this today.
Title: Re: Wiped out...
Post by: iraisin on September 28, 2012, 08:26:47 PM

I don't know what to say. I am so sorry about Max. I love my babies - they fill my house for me and love me more than I deserve. I can only imagine how lost and helpless you feel with all of this - not to mention the violation from whatever is poisoning your community. Gosh, I feel empty and sunk even thinking about it.

And your mother, with the research you've done, do you think that is what made her sick so quickly? Is there anything you can do? Like a class action?

I haven't read your link yet, I will go check it out tonight. I am praying for you, dear. God bless you.

Title: Re: Wiped out...
Post by: quietdynamics on September 29, 2012, 07:32:29 AM

Iraisin and all: "I can only imagine how lost and helpless you feel with all of this"

No, I am clear and focused. Mom has a living will. And fortunately talk of chemo/surgeries for cancer was open, as family and friends were dx'd with cancer. Remember Mom is 82 and so a good number of friends and family and her husband have passed on. I knew Mom felt awful that she was not able to bring her husband, my stepfather home. I have taken the right course.

We are going to the festival today.

Hopefully soon I want to tell you about this experience and how I am handling it given my own limitations, and the strengths, lessons I am learning.

I want to share with all of you the Hospice experience and the reaction of my children, and Alex, my soul-mate and rock. My daughter is more like me. She said "you will let me know what to do", and I could see her fear in her tearful eyes. And I relieve her by telling her "I will not have you do this". It has been consuming. My son is more stoic. I ease them by gently reminding them that our time here has a beginning and an end.

There are family tensions, and family support.

Max, as I posted was a shock. I lived in an area that was monitored for asthma. A major manufacturer of Vitamins was in the area, landfills, farms that leaked cadmium from all the farm  batteries left laying for years leaking into the many streams that came off the mountain ridge. Not something you would notice or think of as you passed the crops, small dairy farms, orchards. An idyllic, rivertown in the process of being slowly built up for the real estate taxes that benefit the community. I had thought a good questionnaire would have been to pet owners. To find out if they had disease. I thought that would hone in more on environmental factors, water, soil, pets do not participate in bad lifestyle behaviors.

Anyway, I have to get ready to leave. "Some" family is coming today and honestly I do not want to be here. It is my boundary.

As always thank you for your support. In my own small way I have probably educated a dozen people about SJS, nurses, aides, Dr.

Off to hear music all day and hold hands with Alex.
Title: Re: Wiped out...
Post by: Tivia on September 29, 2012, 09:20:00 AM
I am so so sorry for all that is being thrown at you. I dont know you but I am crying reading all that is happening to the ones you love, and yourself. I am going to pray for you and your Mom...and Max. You love your Mom so much, hold on to that. I wish I had had the opportunity to spend more time with my Father before he left this world. Cherish the time you do have.

As for the toxic town syndrome I am also all too familiar with it. So much rampant dumping of chemicals, burning of pcb's, the runoff from the farms, lead contamination. Cancer rates, asthma, AI's, run rampant here in the lead belt. I grew up by a little place you may have heard of..Times Beach fitting name no? Why mankind seems determined to poison themselves in the name of convenience I will never understand.     
Title: Re: Wiped out...
Post by: quietdynamics on October 01, 2012, 09:42:02 AM

I left Mom and set out driving in my hot red Honda del Sol. Like this one:  Shifting the gears and feeling free.. for about 20 minutes. My right arm started feeling like it was weighted down, legs started aching. headache. Got home and it looked so wonderful..but I could barely get up the stairs. One hour later I crashed for 5 hours. I woke up with a sty? and puffy left eye.  No festival today. But, it felt wonderful being in my own bed, and Frankie, the tortie cat was purring and rubbing on She will even pull and lick my hair..strange. The old cat, Amy is in bad shape, and stumbling. The vet says an infection.. she is maybe 20 yrs old. And our Buddha, Siamese came to rub on me as well. I think even Alex was purring.

I spoke to my daughter for an hour. I needed to let her know that I miss her, so much.

We went late to the festival Sunday. Usually, I can feel the music in my soul, but, it just bounced off me. "Dead woman walking"  Walking back to the car I stumbled a few times and was really dragging. The camera batteries died, bummer because I love the architecture in Bethlehem, beautiful Moravian structures and the old Ice House on the Leihigh River. 

Spoke to my cousin and she got help while I was gone. She insists that I cannot do this, and actually the physical therapist from hospice has said the same to me more than once.

I wish I could spend another day here at home. With Mom, it is like being a mother to a newborn, your senses are always on alert. I cut my nighttime meds back, so I would hear her if she called out. At night I give her Ativan to help her sleep. And I now have to give her 1/2 the dose in the daytime when she becomes agitated. The nebulizer  in the morning to help her lungs. She does not know she is in her own home, so now I feel I have done what I promised and can move Mom close to where we live. She often wants me to cover Charlie, her husband, who she sees lying next to her. It is actually a pillow I put under her arm.

I made back-to-back Dr. appts for try to catch up. And was supposed to have Cardio, Gyno, etc,  done back in July/August. The Neuro has been a champ..but, understandably will not refill scripts again until I see him. Maybe I will take him some Hersey's Kisses..LOL.

I really did not know how tense/stressed I was until I left. My chest just feels like a band is constricting it. And I did not realized how much shallow breathing I have been doing, until I tried to sing along to a song on the radio during the car ride home. My favorite Pat Benatar.."Love Is a Battlefield". My daughter and I would always turn up the volume and shout that one out! I have klonopin, but I have only used it twice.

Time to go pack up some warmer clothes.

Title: Re: Wiped out...
Post by: Katybarstool on October 01, 2012, 01:25:05 PM

You really have had your hands full recently with your mum and your own problems. It's no wonder you are worn out. But, it sounds like our mum could be brought nearer to you now, and hopefully, that would help you a lot.

You are a wonderful daughter.

Sending you a big hug.

Title: Re: Wiped out...
Post by: quietdynamics on October 09, 2012, 08:39:17 PM

We are coming to end of Moms' journey.

Mom was not eating much, a few teaspoons of applesauce, jello offered throughout the day. I would put Wendys' chocolate Frosty, in the freezer and spoon that into her mouth. Diluted Cranberry juice. Since Friday she has barely taken anything. And her ability to swallow fades away.

This has been the difficult time for me. When I was spoon feeding her I was the caregiver, it gave me purpose, and mothering satisfaction. I had relinquished the hygiene changing to the Hospice aide who comes for 2 hours, in the afternoon..changes Mom, washes her and changes the sheets. With Mom so weak it is easier for me to wait for the aide so we do it together.. I know the aide, who is wonderful, can do this herself..but, I work along side her. When Mom had some strength I would change her and check her "tush" first thing in the morning. It is a process of adjustments, with comfort and calm; the goal. I play soft Diane Krall for Mom, songs she knows. I hope she see herself dancing and will pass that way. She was stunning, tall, with a presence that commanded attention when she merely entered a room. I put a dab of her favorite perfume under her nose.

I laid next to Mom, stoking her gently, talking to her. " Mommy did you see Mom today, Aunt Nornie, Charlie ( her husband who passed 4/11)? Everything is taken care of; we will take care of Max (Mom vaguely knows he is limping), Morgan and Scott are good (her grandchildren). Mom, you are not going to get better. You can let go"

Mom is just today starting to have some pain. I gave her a first dose of Morphine..she is wasting away and does not need much. I give her kisses.
Title: Re: Wiped out...
Post by: Bucky on October 09, 2012, 08:55:28 PM
((Quiet)) . . . you are in a heart-tugging position . . . being with your mom in her last days.  I've been in your shoes and I know how it tugs at your heart strings to know you will lose your mom here shortly and there is nothing in your power you can do to heal her and make her well again.

Continue to talk to your mom, even though she may not be able to communicate with you.  I truly believe the hearing is the last sense to go . . . she will hear what you tell her.

I wish you peace and comfort as you deal with this difficult time in your life. 

Title: Re: Wiped out...
Post by: Carebear on October 09, 2012, 08:58:41 PM

Bless you for taking such good care of your Mom.  I can really relate to your experience, just as Bucky said.

You're a good daughter.
Title: Re: Wiped out...
Post by: quietdynamics on October 09, 2012, 09:21:01 PM
Hospice has been wonderful and supportive. The nurse held me as I cried, when she said Moms heart is irregular. I knew the time is near, but hearing it; a flood of emotions came. I pray it is soon and I am so very relieved Mom is not in pain. That is what I focus on. This came so quickly.

Doing in-home Hospice has been consuming. I have been here since mid July. I was only able to get Mom into the wheelchair a few times, using the Hoyer lift, and once into the reclining chair in her bedroom. I thought I would have Mom in the wheelchair everyday, have breakfast with her in the kitchen and sit with her and Max on the deck overlooking the yard. That was my vision; but reality got in the way.

Hospice supplies all of the necessary medications, supplies and wonderful support group. They do keep an eye on the caregiver, take time to sit and talk. I bought Mums and gave the nurse, aide, and physical therapist a plant.  Giving something living.

If someone needs they can change to Hospice care in a facility. So you are not locked in, should other events occur, care becomes overwhelming. We were going to move Mom up to where we live (an hour away), so I could go to my Drs. An hour drive does not sound like much, but for me a round trip and the office time is exhausting.  Mom doesn't know where she is now. But, the nurse told me in her experience  we would not have time to move her.

Having this experience I would opt, for myself, to have the change to "facility" care. Home while lucid, then facility. I think it is easier and more restful for family loved ones. Hospice does not = cancer. Any condition that is terminal, 6 months, is covered by Medicare and/or Medicaid. If the patient has life beyond 6 months, Hospice just re-certifies dx. If during hospice, the patient decides to try intervention, they can. And later they can get Hospice again.  If the caregiver needs a break they have "respite"care where the patient goes into a facility for a few days and then home again.

It has been much better to have Mom home, less stressful, than bouncing back and forth to hospitals/ rehab, trying to catch Drs, phone calls.

The only major difficulty was doing this in Moms' home and being away from my home.

I did have to use my meds differently. And I did use klonopin a few times. I forgot Ambien after we took a break last weekend, eventually that caught up with me, and my right hip got the "wonkies" so I need to step up with my left leg.. just adjustments.  The aide is here for two hours..but I have been too tired to go I sit on the deck with Max, he has lost the use of his right paw. I give him Tramadol.

My cousin took the bus from NYC and she is here with me. Alex will come tomorrow (I told him to stay home today). My cousin and I will go out tomorrow..perhaps the rain will stop and we can look at the ocean. I have yet to get there in these 4 months.

So the journey evolves and the passing in imminent.

The conservation of energy is one of the fundamental principles of physics and no violation of this law has been found till date.
It states that, "Energy can neither be created or destroyed, but can be changed into different forms".

I am excited Mom will soon start her next journey.

If anyone has questions about Hospice and I can help; send a PM, I cannot access my email  (?) and will open a Gmail account.
Title: Re: Wiped out...
Post by: slccom on October 09, 2012, 10:44:37 PM
Quiet, my prayers are for you and the rest of your family still here. I know the ones already on the other side are setting up a party!

I'm so sorry that I can't do anything for you except let you know that you aren't alone.
Hugs, big, long ones,
Title: Re: Wiped out...
Post by: quietdynamics on October 18, 2012, 10:22:23 AM
Mom passed Sunday at about 1:10 am.
Mom passed pain free, peacefully and with the dignity she always talked about, wanted.

Friday afternoon, Mom with the little strenght she had, reached for my hand, she opened her eyes unusually wide, her pupils were enormous,gentle,and I felt I was drawn into her soul. Was I imagining it? No. Mom, closed her eyes briefly, and then opened them again.. I felt my energy,soul ..just fastened into the peaceful depth, to a place i have never been. This will be with me always, an experience beyond words..a precious gift, mother to daughter. The wonderful aide witnessed this. The aide has 20 yr. of Hospice experience, and she was taken aback.

It is perhaps part of the rally some people have before passing? Moms breathing changed.

Mom was not happy about the catheter, not having her underwear on. I got rid of the cath, washed my Mother,underwear, and of course a dab of her favorite perfume, gentle brush of her beautiful wavey hair and the blanket her mother had made for her. It was all so simply natural.

My son came with a single red rose. When I went back into Mom, my son had placed the rose in his grandmothers hands, freeing them, whereas I had covered them. His thoughtfulness, and arranging her hands, just so, filled my heart. He said, Nana loved a single red rose.

Thank you, each and everyone for your support and prayers. Today, I am going to drive home with Max, I promised we would care for the old boy.. He has lost the use of the right front paw.. My right arm is weak.. So we have Hope the cats adjust. Alex is getting the house ready, and my daughter will come  back with me to help with Nanas' house in perhaps a week.

I have invited the Hospice nurse to my home, and hope to take her for lunch, there is a nice bistro with a deck overlooking the DElaware River, then we can enjoy the art and antique galleries. She was a strong and powerful comfort to me..she would even physically check Max!

I will gather my info on Hospice and post it in a few days.

Find your blessings ..great and small, apparent or upon reflection. I promise you they are there,love Barbara

Title: Re: Wiped out...
Post by: Carebear on October 18, 2012, 11:00:44 AM
That was beautiful, Barbara.   Prayers go out to you and your family.
Title: Re: Wiped out...
Post by: Bucky on October 18, 2012, 04:51:38 PM

Sending my condolences on the passing of your mother.  As difficult a time it was for you to be away from your own home and family caring for your mom - you were where you needed to be.

How sweet of your son to get a red rose for his grandmother and place it in her hands.

Life will be different without your mother - you can't call her up and hear her voice.  You can't go shopping together, etc.  But . . . she will forever hold a tender spot in your heart.

Wishing you and your family peace and comfort.

Title: Re: Wiped out...
Post by: iraisin on October 18, 2012, 05:01:58 PM
My deepest sympathies to you, your daughter, Alex...everyone in your beautiful, caring family.

Thank you for sharing all of this and letting us witness such goodness, respect, honor, love, dedication...there's just so much you gave us with all of your posts.

You've shown your daughter a great thing. I took care of my mother for two months. My son helped me and has a new mind about responsibility, family, and loving.

You really did an incredible job keeping your head. Your posts are so calm and smart. Your actions in how you tended to your mother where so thoughtful and caring.

You are such a beautiful spirit, Barbara.
Title: Re: Wiped out...
Post by: gmomjuju on October 18, 2012, 05:55:04 PM
My condolences to you and your family. I had exchanged a few PM's with you earlier in the summer and you were so helpful. I have read all of your posts concerning your Mom and she was truly blessed to have had you and your care and concern. There is no more suffering now.

It sounds like your Mom was a remarkable woman and that she raised you to be just like her, remarkable as well.

I my have to lean on you in the near future as you have been outstanding in setting the stage for how to care for a parent in need of a loving daughter.

Prayers are with you in this most difficult time.

Title: Re: Wiped out...
Post by: eyeamdry on October 18, 2012, 09:58:35 PM
What a wonderful thread/blog of your Mom/you/your daughter/pets and much, much more.  May you be at peace now and hopefully can gather strength to go on and take care of yourself and your remaining family (and pets).  Lucy
Title: Re: Wiped out...
Post by: Cdbhappy on October 19, 2012, 07:08:50 PM
Thank you for sharing such a personal and beautiful experience with us. I know we sometimes rally and do what we must even though it takes a toll on our health. I admire the way you laid beside your Mom and gave her the pillow so she would think her husband was there.  What a gift you received from your Mon right before she moved on to her next journey.  Blessings, peace, and recovery for you and your family.