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For all of you whose loved ones have been in a nursing home, was any kind of effort made to engage them once they reach a stage where they can no longer participate or make their wants and needs known? Could my mom's life be better there?


I struggle daily with my inability to provide any warmth or quality of life for my mother. I read and search for ideas to engage her, but 90% of the advice I find is aimed toward those with early to moderate memory loss and without the other profound physical disabilities she has – lack of vision, hearing loss, immobility, a profound inability to follow a conversation or story. We were never a touchy-feely kind of family so advice to include soothing touch – especially if her behaviour has me on edge and I am all stress and prickles – is just not in my nature. Music works for a while, but the majority of her day is spent sleeping or sitting or lying like a vegetable.


Another thing, once they reach my mother's level of disability everything I have read advises they are close to dying, but my mother is stable and has been essentially unchanged for years.

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I think the most important thing for me once I reach that stage is to know I'm not alone. With all the coming and going in mthr's memory care, even the bed bound patients see people around (their doors get propped open). The hospice social workers have games for their patients, but they include everyone who wants to be there. The staff will bring in people in wheelchairs who fall asleep in minutes, but maybe those people are just resting their eyes and hear the conversation. My point: there is necessarily more activity and people noise to let a non-verbal, trapped inside the body person know they are not forgotten in a memory care or nursing home.

As for prickly and tense: mthr was an abuser. I cannot give loving touch to her because of our history. The staff has no such baggage, and they are super at pats, rubs, and other lovey touch things that she never showed me. This makes a home an even better option.
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Wow, your story sounds so much like mine. My mother has advanced Alzheimer's (stage 7d) and has been there for a while. She seems stable at this stage and nothing is changing really. She needs total 24/7 care, pretty much lies in bed all day like a vegetable, doesn't communicate, has to be spoon fed pureed foods, etc.
I believe my mom is better at the nursing home. I just couldn't take care of her overwhelming needs and be a decent person at the same time. She was severely mentally ill all her life and was everything but a kind, loving, encouraging mother. In fact, she pretty much just went back and forth between locked in her room crying or outside her room raging at all of us for some delusional something we did against her. So, yeah, soothing touch is not going to be my thing at all.
It's a horrible, horrible disease and takes its nasty toll on everyone in the family. I just know for me, and it sounds like for you as well, the nursing home is the best choice. It's the best way of providing care when someone is as disabled as your mother sounds to be.
Not that you mention feeling "guilt," but I know I sometimes feel like I was less than "good" for putting her in a nursing home. Sometimes I think the feeling we call guilt is really just our humanity coming through--a feeling that makes us sad that another human being has to live this way. Our humanity makes us feel sad about it, but there's no reason to label that feeling "guilt" because we did not cause it and we cannot control it. We just do the best we can, and nursing home or long-term care centers are the best answer to that for everyone in the family once a patient gets to late-stage Alzheimer's or dementia.
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My mother who has mobility issues, incontinence, plus advancing dementia has lived in the dementia care side of an excellent assisted living facility for the last four years. I heard the local hospital MDs refer to this facility as providing "Platinum-level Care." It is a social setting rather than a nursing home, which is a medical setting. Mom does not require invasive medical treatment so this is the right level for her and I was lucky to find it. When Hospice might be required, it will be brought to her in this setting, in her room which is furnished with her own bedroom set from her home with the substitution of a residential-type adjustable bed which I added. The cost in the NE for this level of care: $7900/month. The cost of nursing home: $11,000. Best decision I ever made.
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CW, your mother's remaining quality of life relies most on her being physically comfortable and not frightened. It really doesn't sound as if she is able to gain from the stimulation of an NH now, so I doubt if she's missing out; and in spite of her lack of response I would guess that she does benefit from being in familiar surroundings with her closest kin. But only as far as it goes. And who can say can say how far that is?

The main thing is that it is not likely to make an enormous difference to your mother either way. Whereas, more importantly, it might make an enormous difference to you. So taking all things being equal as regards your mother's welfare, the next thing to consider is the costs and benefits to you of the option.

I know you know exactly the points to weigh up, so I won't list them. I just thought it worth pointing out that, once your mother's welfare is assured, letting *your* wellbeing tip the balance of the decision is a perfectly legitimate approach.
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We all feel guilty no matter what - but there comes a time when the care-giving skills needed are more advanced than we can provide and a skilled nursing staff member is better equipped to provide that care and it is better for the resident. At this stage, you need to take care of yourself first and let others care for the day to day stuff for mom. Enjoy those few pressure minutes/hours with mom at her most lucent times. Forget about whether or not she recognizes you or understands.

YOu said you aren't touchy feely. Thats okay, maybe draw her a pretty picture or make her a nice card/poster she can enjoy (if only for a moment); treat her to an ice cream or small box of candy. Bring her a McD happy meal; bring her a flower. Place a birdfeeder outside her window. It doesn't have to be much.

My mom is still at home. I have finally come to realize that we only have snippets of meaningful conversation, a meal, and the shorter the visit the more pleasant she is. SHe is overwhelmed with trying to keep up if my visits are longer than a couple hours I've come to realize. Sad; but I go with it. Above are the couple things I do that bring her joy -- even if she forgets about them an hour later.
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I would think better for companioship and safety, the nursing home is worth its weight in gold!
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I placed my mom in memory care in January and see her every few days for maybe 45 minutes to an hour. She is quieter there than when I kept her at home (a lot less unpleasant hallucinating now). She's incontinent and basically in a wheelchair but is able to walk with PT for exercise. She doesn't try to get out of the chair by herself and so far has not fallen and evidently fits in well with the unit she's been placed on. I come sometimes at meal time, when I help feed her, and she still eats well. Other times, I'll wheel her to the front lobby to sit by a big window or back to her room for some privacy (her room is decent and bright with a window). She and her roommate tolerate each other and even have the same first names. I'll pull out a cookie and some decaf coffee from a thermos and we "visit," as she still tries to engage in conversation. I can get her to laugh still and talk about when she was a kid. She's not wild about the afternoon rowdy "singin' to the oldies," bean bag toss or "art" class - most of them don't seem to get much out of all the noise, frankly, but I know staff have to do things to keep them awake after lunch, such long afternoons and evenings. Mom even once asked me to turn down the music, and I don't blame her. I think all the activity that goes on all day there has been good for her overall.

I haven't seen the unit she will probably end up in, but my sister (who works at the front desk there) says there are less patients there and more aides who do one-on-one, so I'm hopeful she'll get plenty of attention when that time comes. They tell me she actually behaves pretty well and is easy to deal with, thank God. I go home feeling okay and will sure continue to go out there often. But much as I feel relieved about mom overall, I still find myself praying God will take her soon and that she won't linger for years.
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On good days I feel that mom is as content here as she could be anywhere, and probably better cared for. On bad days when I have a meltdown I feel she would be much better off without me, at least nobody would yell at her in a nursing home. Well, I would hope not anyway.
It's that whole "unknown" factor that screws up logical thinking... I can surely carry on for another few months, but the thought of another few years is terrifying.
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You will change.
You will become a daughter again, not a caregiver first, daughter second.
You will help reflect an attitude that she will pick up on.
One of the nice things is there are more people around in a Memory Care unit or Nursing Home so he will always have someone around that will offer a smile, a gentle touch on the shoulder, a kind word. Even if they are busy just a smile is better than a tired sigh.
While everyone wants to remain at home with family and be cared for I am sure we would all agree that we would not want our loved ones to be going through what we are going through caring for someone. So the simple answer is would you want your son, daughter, spouse to be doing for you want you are doing for someone else? I am betting the answer is a resounding NO.

And as a side note it sounds like your Mom may be final stages and in reality a move like this might cause a significant decline so much so that she may not last long.
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CWILLIE - I believe you are near YVR from some of your comments - yes because my mom [91] is better in NH than here - she is diabetic, legally blind, hard of hearing & dealing with dementia from a fall that broke her neck too so in wheelchair - I can't help her due to my own issues [I am 67 with bad shoulders & artificial knees]

At NH she has 10+ activities a week [art, beading etc.] plus religious services - I could never be able to do that much - she is a participator so that is easy

My dad [94] is in another facility [weird thing is they have same legal name & advice is not to play Russian roullette with accidental med switch] but he is mentally all with it - he needs the physical help I can't do unless we did a 3 month renovation [moving walls etc.] to our only full bathroom - he does not participate much but the PSWs just love interacting with him - within 48 hours of getting there after 3 months in hospital the difference was amazing - he has his meals, laundry etc done for him but rest of time he writes letters, plays on computer etc very much like he did in the retirement home but with so much extra help for physical needs

I do not regret having them there as otherwise some issues would be slipped by - ie mom is getting over pneumonia right now but when you have an elderly parent at home ... how often are vitals taken [BP, heart etc] & that is where the difference is - professionals are doing charting daily & they knew to have mom get an xray [onsite] after hearing some chest sounds otherwise I would have put her cough down to her regular winter cough

Don't rush to do this but when the time comes don't feel guilty about it either - did you become the teacher your dad wanted you to be? or the hair dresser your mom wanted you to be? - no you followed your own path on your career .... so to you may want to be 'super daughter' but you can't & quite frankly nobody can - we can only do as much as we are able & wisdom is knowing when you need more help - so say HELP when the time is right
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