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My mom is starting to refuse getting up in the morning. I have been going to the nursing home every morning to help the aides. All she will do is cry and say she's tired. She wants to die. She is very confused and very scared and says "I can't believe this is happening" (she means the incontinence which she is freaked out about and CANNOT ACCEPT). I can finally convince her to get up but it is taking it's toll on me. I feel I cannot do it anymore. If I don't go I am left with the image of my mom crying and the aides FINALLY getting her into her wheelchair where she stares at her breakfast. It's a horrible thought for me that I cannot bear. What do I do?

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I liked Cwillie's suggestion of letting the aids get your mom up and going in the morning and you joining her for breakfast. That would give her a reason to want to get up. When my dad was at the nursing home for rehab after a stroke, they were firm about getting him up and dressed and to breakfast and he went along with it surprisingly well. In fact, I think he was glad someone else was in charge. Now I find he picks up quickly on my voice and if I have a positive approach to things, he is happier about going along. Works for kids and dogs, too.
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Georgetown, are you glad she has an aide?
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I agree with WritersLife...well said! My Mom is 86 and lives alone with an aid 4 times a week. I go everday as well. I have learned to let go and just be with her and show compassion which allows her to open up more about her feelings.

One day at a time and no worries about schedules. Make sure she takes meds and do the best you can. Love and tenderness have worked best for me. It's difficult but part of the cycle.
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understand, captain, hopefully it will still happen for her; at least she's in a safe place where hopefully it can
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i stayed with my aunt at her IL for several days almost a year ago when doc said she could no longer be alone . she curled up in her recliner safe in the knowlege that someone was there in case she needed them and it was obvious to me that she hoped to sleep peacefully and at some point pass away .
that wasnt to be . she was found a spot in NH and has lingered on there for ten months . she still confides in me from time to time that her useful days are far behind her and shed like for this to be over with . she still has fun days and teases the people around her but its because she has no choice in the matter . she would have preferred to lie in her recliner , waste away and take the long nap . i would have let her knowing what her wishes were .
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It sounds like the incontinence really is freaking her out. You could tell her it is due to some medical reason or give her some corny excuse and tell her just ignore it we can get you up and out of there anyway, we don't have to tell anyone, they'll all realize that's the problem if you just try to hide it by staying in bed. Or maybe there is someone she thinks the world of who is actually having the same problem. Maybe it is actually some medical reason, like a UTI. Basically you can sympathize that it sucks and its an indignity, but don't agree that its a reason to be ashamed or to live in perpetual pity party mode. And it might get better if she gets up and eats better. I guess that depends on how you feel about therapeutic fibbing, but in a way its not fibbing, I mean you don't want or think her life should be over just because she can't control her bladder any more if there really isn't anything you can do about it.

And, if there really isn't anything you or she can do about it, well, see if you can set the example of not letting it freak YOU out, and not joining in on the pity party. It is not your fault, it is not her fault, and just the fact that she has good care, a safe and pleasant place to be, and YOU in her life are blessings still to be counted. If she can't find positive things because this one negative thing is overwhelming her, you could try to find the positives for her. My mom was mostly incontinent too, but after a while did not feel as bad about it, but incontinence products did have to be properly hidden away especially when we did any outings. Pizza and grandkid visits floated her boat so I organized as much of that as possible for her.

A mg of melatonin at bedtime is probably not ideal...try giving it more like after dinner just to make sure it wears off by the AM; it is not like most sleeping pills that kick in right away, its is neuro-hormonal and works through a series of neurotransmitters in the brain.
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nojoy, my thoughts exactly, what was going on with dad's grandson; he's the one who couldn't let dad go; could understand him not wanting him to go to the nursing home, in that sense but at first he also didn't want to actually take care of him with him needing to be actually taken care of, not just stayed with; wish really they'd just called in hospice then rather than home health but can somewhat understand them not feeling free to do that with him having been under the care of a specialist without getting his input but that's also where I really feel this care coordination really needs to come in because everything got so mixed up and complicated and confusing between all his different specialists with no one taking charge and me not realizing it - they'd ordered some tests that we were told were for one thing and didn't find out for a long time that's not even what they were for so had nothing to do with what he was being put through and then found out that the lesser treatment, if you will, would no longer work because of all the time that had elapsed while they were putting him through all the worse stuff, although actually they hadn't thought it would work anyway but they thought we wanted what they were doing, or rather, they thought his other specialist did and were deferring to him, while he thought it was them and they were the ones ordering it, so if they didn't think he should have it, then why were they ordering it?
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perfect answer from writer's life!! i've been caring my mother and father for the last seven years...and have seen the increase for need to sleep. my mother has dementia...and i use to make her get up at her usual times to eat, clean up, bathroom, walk, whatever. well thru the years...she didn't have to tell me anything it was written all over her face and her slimming body. I get her up twice a day now...to eat and clean up. doctor told me to make sure on rotate her on her sides every two hours...and can change her diapers in bed if need be...it's not as hard as you think...just use the diapers with tape on the sides and you can just roll her on her side when cleaning here insert the diaper...and then lay her down on her back again! i let her sleep on her back thru the night, and as soooon as i wake up...change her diapers and rotate to her side...NO BED Sores!! I keep pillows around her, under head, make sure it's not to fluffly or her head will be stuck in that position...pillow on her chest, one on her back to prop her up...and one between her legs! don't forget that one. pressure on their skin on any part of their bodies causes bed sores. my mom sleeps like a baby, surrounded by pillows...no pain...no pills, no fear, just dying on her own terms. LOVE my momma...hope she dies soon! No one needs to live longer than they have to when they are ill! We wouldn't want to...that's for sure!!
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Sounds like some of the elders might do better with hospice.
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my husband does not want to get up. sometimes he sleeps as much as 18 hours a day. He has LBD. Should I try to make him get up more?
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Nora789: I can't think of any disease more filled with indignities than Alzheimers. It's such a horrible disease. Yes, maybe your Mom is depressed, who wouldn't be. You're incontinent, can't remember anything and need help to do virtually everything. Not a very pleasant life.
The flip side of the coin is that maybe your Mom truly is tired and truly is ready to die. Maybe it's time to accept her for where she's at on this journey and not try to convince her to get up and do things she doesn't want to do. Maybe it's time to step back and evaluate your own feelings. Are you ready to let Mom go? It really sucks being a caregiver and a daughter and having to make all these decisions. I know what I'm saying is hard. I'm a caregiver for my Mom with ALZ disease and I pray that the decisions I make regarding her are always in her best interest and not mine.
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Nora, I'm somewhat with writer's life; I still remember when my dad told me the same thing and that he was going to tell his doc at his next appt. that he was going to quit taking his medication; only problem was, in some ways it seemed as if he already somewhat had; at least his caregiver/aide told me she was finding them all over the floor, so maybe he was trying but not being able to or maybe it was somewhat deliberate since he'd already made that decision and was just waiting to make it official with his doc; however, the meds were to keep him from having a stroke - but not a heart attack, which it appeared - by the elevated cardiac enzymes - he ended up having before his appt. and wound up in the hospital, which is another issue in itself - almost wish he could have just been left in peace at that point - but wish he'd told his grandson, that he'd had move in with him to take care of him, what he told me and that he could have done that
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Nora maybe you should try NOT going to the NH every morning, maybe your mom is saving her worst for you, and perhaps she will behave differently for just the aides. Just an idea.
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Your mom may be depressed, speak with her doctor and ask if medication would be appropriate. She may also benefit from seeing a counselor to help her deal with issues of aging/illness. If she's not sleeping well then she may not want to get up because she is tired. She may have stillness and it hurts to move, if she takes anti-inflammatory medications or tylenol, maybe she can get it before she gets out of bed. All anyone can do it keep trying. If one thing doesn't work, try something else. Does she have items in her room from home? If not bring in some items-this will make her room more home like and may help with confusion.
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My Mother is totally different now. She can't walk and thinks she can. She keeps falling because she keeps trying to get out of the wheelchair. This morning she was hollering"I'm waiting". I ran in there trying not to fall and trying to wake up. She was sitting on the side of her bed. She said someone told her to get up and get ready. She said they were going to take her somewhere. I asked where are you going. She said to school I guess.??? I let her sit there for 1 hour then I asked if she would come sit in her rocker in the living room and wait for them. She said I guess I could. See what happens next. She was sleeping all the time before and wanted to stay in bed. I kept trying to get her to eat and take her vitamins. Now she is getting too strong in her brain. She can not walk. We must use a wheelchair. When ever I check on her at night, she is awake. ?? Hard to figure her out. She is 94. I am 68 and very tired. Praying for strength to live through this.
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I think it is important to try to maintain some sort of routine for them, if only to ensure they are able to sleep through the night and get their medications on time in the morning. It's important that they don't continually miss meals, and lack of routine can also screw up their bowel function... believe me you don't want to do anything that adds to chronic constipation/diarrhea!
My mom would like to stay in bed also, but when I tell her she will fade away and die if she doesn't eat she grudgingly allows me to get her up. Nope, she's not ready to leave this world yet, if she ever expressed to me that she was ready to go I might not insist.
Nora789, maybe you should stay back and let staff get your mom up and ready in the morning, and you can then join her and help with breakfast. They are used to dealing with reluctant elders, and it sounds as though your being there is causing them to step back and allow you to deal with your mom. Maybe they won't do things the way you would, but it seems you really are not having much success trying it your way.
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I totally feel for you!!!! I helped care for my grandma in her home the last years of her life. She had days of not wanting to get out of bed either, or not wanting to move from her recliner chair in her living room (even sleeping out there several nights!). She also cried a lot and just was not very happy often. My advice is to be as compassionate with her as you can. And patient. She is likely "not all there" so it's not REALLY "your mom" that you're seeing right now.

It's normal to be ready to die (in my experience) at the end of life. She knows her time is coming near. That's ok. My grandma said several times to me that she was ready to die and just wanted to die. It's hard to hear, I understand, but it's part of the cycle of life. She's lived a good, long life.... and sadly it's just come to its natural end. We'll all be there someday.

If you haven't, I'd talk with her doctor (not the nursing home staff). Maybe she's in pain, if she's crying, and he would prescribe her something stronger (they did for my grandma and it really helped calm her down and be more comfortable).
Also, she just may be at the point of needing to be changed (like a baby). My grandma reached that point too (I don't mean to keep referencing my grandma, but I do it so you know I've been there and have personal experience). She wore Depends, and many days the best we could do is get her to stand up right in front of her chair, and change her Depends. At the very end (the last couple of weeks), she literally wore an adult diaper, and was laying in bed, and the hospice caregivers or other caregivers we had coming to her house would change her.

Again, yes, I realize it's sad and hard to see. So just do the best you can, as far as how much you see your mom and what you do. Do what feels right to you, from your heart. I'm so grateful I had every second I had with my grandma, even the seconds spent changing her Depends on cleaning up after her.

I'm a believer of letting people do what is most comfortable for them, especially at the end of their lives.They've earned it! If she doesn't want to get up and sit in her wheelchair, why make her? It's also normal to not eat as much as people get older. Don't worry about it and don't force it. Your mom will do what SHE knows she needs to do. If she just wants to lay in bed and cry, let her. Maybe she needs that release. Maybe she needs that to emotionally get herself ready for her own passing. And when you're with her, just BE with her. Don't make her do things she doesn't want to do. Hold her hand. Talk to her. Maybe play music if she likes that. Whatever she likes and makes her feel good. That's my advice.

I wish you the best through this tough time!!!! So many of us have been there and understand and feel your struggle and pain! Hang in there. It'll be ok.
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I found the above answer very helpful as I am in exactly the same situation - 88 year old mum with dementia and immobility - is got out of bed by carers who transfer her to our lounge where she might fall asleep again immediately, not waking until they return at 2.00 pm to toilet her. This means she gets beyond the meds, won't take them, and ends up missing meals, becoming more lethargic as the thyroxin is being refused, and has more painful joints as the same happens with the steroids. It's nightmare and no chance of any anti-depressants because they have a bad effect upon her and knock her out completely for days on end. The caffeine-free drink regime is one I have been using now for three years. I turn my mum over at 12.30 every night as she can't do this herself and she is usually in a deep sleep, and often still there in the morning when the carers arrive so not really sure that her night-time sleep is being disturbed. She has regular times to go to bed and be woken up. What's the function of the 1mg melatonin at bedtime?
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My mom lives at home. I care for her with the help of aides. She has never been a morning person but was starting to stay in bed until 3 or 4pm. She said "why bother" and complained of being tired. A few things helped remedy the situation. She has dementia and people with dementia often suffer from sleep disturbances and sleep apnea. She first had an overnight home pulse oximetry monitoring that showed each time her oxygen levels dropped. It was a very easy test to do and it alerted us she needed an overnight study at the sleep lab. She was diagnosed with severe sleep apnea and given a cpap. Her energy has greatly improved and her cognition has also improved some. We also set and stuck to a reasonable bed time and awake time To reset her bodys sleep awake cycle. The geriatric psych dr also added melatonin 1mg at bedtime. She was also prescribed celexa an antidepressant to help with anxiety and depression which has helped alot. When she refused to get out of bed at the nsg home for physical rehab i spoke with the recreational specialist about moms likes and she made a special point to seek out my mom and get her involved in things she likes. We also ensured mom only drank decaf beverages. I hope these suggestions may help you or others. Best wishes. Hang in there!
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