Mom

[Narablueeyes]

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

[Chickpea]

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

[Carolina]

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

[irish]

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

[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

[Katybarstool]

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

Kathyx

[Chickpea]

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

[lighthouse33]

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. 

[lighthouse33]

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. 

[Carolina]

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

[Carebear]

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.

[irish]

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

[lighthouse33]

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.

[Carolina]

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

[lighthouse33]

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.