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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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cwillie, my Mom was never the hugging type of person so I know what you mean about returning to her a soothing touch, it just felt so foreign for me to do.   Also, not in my nature.   My Mom also had lost of vision and hearing, immobility, and her fall injury caused her to skip all the previous stages of dementia and go to the final stage.

I had two choices, long-term-care facility, or to take Mom back to my parents house and bring in around the clock caregivers.   My Dad was still living in their house, and I just couldn't have him see my Mom in that condition 24 hours a day.

Thus, long-term-care was my choice.   Dad's caregivers [once Dad was alone I called in caregivers for him] would drive him to the facility at lunch time so he could feed Mom or have the caregiver do the feeding.   After a half-hour or hour, Dad was ready to leave.   Part of him wanted Mom to stand up, walk and be her self [she was 98], and part of him knew she would never be coming home.

Mom's nursing home was pretty nice.   My Mom was only there 3 months and was on Hospice.   Mom did like the fellow who was able to pick her up and put her into her geri-recliner... she would say "nice man".   Mom was only 80 lbs but that would be like trying to pick up 80 lb weight at the gym.

Mom had a room-mate, even though she couldn't communicate with the person, the person did keep an eye on Mom.   Mom was a climber, so when she fell trying to climb out of bed, the room-mate would buzz for the Staff.
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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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I would think better for companioship and safety, the nursing home is worth its weight in gold!
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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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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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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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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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I suppose it depends on your state as to what care is allowed in Memory Care, but, in my state, residents may stay in MC even as they progress to the final stage. My cousin is in Severe/Final, but, is not bed bound yet and can still eat, but, she will eventually get there, so I have spoken to the facility about it. They have those residents who do become bed bound and they add extra staff for their care and bring in Hospice. For these patients, they hand feed, turn, etc. with increased staff and attention. They do not provide care if the person is tube fed or requires nursing care. But, since, my cousin has chosen not to have artificial nutrition and is DNR, I see no reason a NH would be required.

In the MC they still attempt to engage those who are nonverbal in conversation and some they will put into their geri-chair and they go into the activity room to  be in the presence of the activity. I think that with your mom having vision and hearing loss makes things more difficult. I would try to engage the opinion of an expert. Maybe, someone will pop up on an online forum. Or maybe, speak with the director of the LTC facility. I think that having all of those losses makes her situation quite challenging.  
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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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Surprise makes some good points. I would think that in most private homes the place might be quite subdued and quiet, except for a tv, most of the time. Of course, you may have visitors, but, that's not a guarantee.
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Thanks for the replies.

I've always advised others on the site to consider the social aspects of being in a facility - whether it is AL, MC or a nursing home - as I really do feel that can be so important. I realized too late that my mom should have moved out of her home instead of wasting away there for years after she lost her vision and couldn't drive anymore. I'm afraid it's too late for her now.

So far I can still handle her physical care, although I know the time may come when I can not.

I'm pretty sure visits would consist of me prattling something inane for about 5 minutes before I would run out of steam while she sits/lies there almost totally unresponsive, so "getting to be her daughter again" is a nice thought but unrealistic. I guess I'm afraid she would soon forget me altogether and I would soon lose the little connection we still have.

As for her being close to the end of life... who knows? She was placed at 40% on the palliative performance scale when we enrolled her in palliative care in 2013, may be at 30% now. She's already beaten the odds and I haven't seen any significant change in a very long time.
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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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geeez! these conversations keep proving spot on, i so identify, cwillie! what to add! compelled to comment!

that quality of life issue... i thought aloud [mumbled softly] just yesterday at drs office the word 'existing' don't remember the context, but said as an evaluation of her days, being just that, existing, and not liv-ING.

but is it MY vision? perhaps not hers? she may be in that place that has me so befuddled: expressing how healthy she is [physically, not too bad!] and mentally [early-to-mid stage? dementia - geri appt in april - lonnng wait - any wonder why? ha!] ...and not realizing that there is sooooo much to experience and she is just taking up space [harsh, but just a way of describing]

we all read/see how many different scenarios others are experiencing with their moms [mostly moms, right?] - our relationships growing up with them - - observing their personalities [faults] more intellectually as we mature...affects how we interact now. how much is their personality, how much the disease...

the rollercoaster of anger and frustration, then guilt, feeling sad is not a fun ride.
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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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The law of diminishing returns, that's the phrase that eluded me earlier.

To use when you're trying to identify that logical cut off point, I mean. You put in x worth of CareWork, with all that that entails, and your loved one gets out y worth of QALYs -

Aside: when I first came across the acronym QALY it was in a searing political satire and I thought the author had made it up. But oh no. The Quality Adjusted Life Year is indeed a unit in current use by health and social care policy decision makers assessing cost effectiveness of provision. Well, I suppose they've got to allocate resources somehow; but chilling, no?

To resume. At some point the x:y ratio is going to become, to use the technical term, COMPLETELY BONKERS. It will make no sense for you to turn yourself into a wrung-out dishrag solely in the (possibly vain) pursuit of a hypothetical, undetectable 0.001 QALY.

But as you know, the real difficulty is that the cut off point keeps moving. E.g...
It's only a few more months.
She's actually much easier to manage now that she's immobile so not a falls risk.
The rehab centre wasn't transferring her, I couldn't leave her there.
I've come this far, I want to see it through...

I think all you can promise yourself (and your friends here!) is that you will keep revisiting that decision. Hugs.
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The around the clock care you are providing for your mom with only 8 hours respite a week sounds incredible to me. Is that still the case? You state that you provide all care for her daily needs. I can't imagine one person doing that. I'd be concerned about my own mental and physical health. Is there any reason you don't have some more help?
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I thank you so much for your question since as a caregiver to my brother, 70, with ALZ I dwell on this dilemma as well. He is not yet at a stage as your mom is, I do empathize for you, but I know it will happen, see it coming with dread, even though my role has been a challenge from day 1. I know there are case managers, trained with memory impairments, who may be helpful to you, they assess, council, even seek out the right facilities for you, your mom. I know there is a cost involved, $$$. We tend to dwell on the interaction and stimulation, but, sad to say, sleeping and t.v. seem to be the normal relaxation for this terrible disease, we all hate it for our loved one. I think it all boils down to providing the attention and comfort our loved ones need, I am realizing it is 24/7, that's hard without live in help, and the right person, one on one really. Let's not forget the financial end of all this as well, that's another dilemma, no one is expecting a curve ball like this to happen. I sense you are an experienced caregiver, certainly caring and loving, this is your mom and you have been doing a great job for awhile. Don't be hard on you, visit facilities, seek out personal and legal advice, there may be options to get help, keep her home with care if that is the best choice and decision you make. Think of you as well, without guilt, you need your health and rest as well. God Bless You
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Sunny, I could have more care but I really don't see the point. Mom is easy to care for, up in the morning, changed and toileted, then breakfast and back to sleep until lunch when we do it all again. Sitting up with some music, perhaps back to bed for a nap, supper is a repeat of breakfast and lunch and then off to bed at 7:00 ish. I have the caregiver do her baths, but that has been reduced to sponge bathing because I'm the only one who will try to get her in the shower. Once a week I do her hair. That's it, aside from the occasional bowel malfunction or her loopy days when she drives my crazy.
Oh, and the fact that I am tied to the house of course.
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Well, a sitter would give you time away from the house. But I do appreciate that it's still very limited, and besides... when you have a fixed deadline like that it really cramps your style about what to do with the free time.

I'm sorry. This limbo is really hard to bear.
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I see CWillie. It still seems like a lot of work to me. Perhaps, you are just used to it. If it's working for you, then, I suppose that's the right solution. God bless you.
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At this moment i am having to make this choice for my hubby of 49yrs, so sad, cried and cried, i am finding it very hard to cope, 7 yrs since it started, Lewy Body Dementia, horrible disease. Found a beautiful nursing home here in Port Macqaurie, no upfront fees, only his pension, approc $300 a mth on top of that, own room and bathroom,just like a motel.
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No, the NH my late mother was in did NOT make it better. In fact, they made it deadly worse when they had a family meeting saying she was "too well to stay there." Say what?? Wrong answer! Less than 48 hours later, she suffered a stroke there and deceased at the hospital several days later!
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Some NH are good, unfortunately, many are not.
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Very timely subject for me. I had to place my 93yr old mother in a nursing home after a failed rehab attempt after 10 years of home care by me. I am unable to lift or transfer her and she is unable to use her legs. Her dementia has been a contributing factor too. Fortunately the NH she is in is amazing. I have witnessed how caring the staff is to their charges, as well as, each other which speaks volumes. It has only been a few weeks but after dealing with the guilt of not being superwoman it is getting better. Mom's dementia is pronounced and the staff is wonderful with her, especially when she is frightened from confusion. She sleeps a lot, but the staff try to motivate her when she is receptive which also depends on her dementia. She is nearing the end so I am trying to deal with knowing that too. I go for visits at different times of day. I am always greeted with smiles from everyone and never made to feel like I was in the way. Of course, Mom is always asking when she is going home, and I never take away her hope. However, I do remind her that I can't lift her so she has to be able to use her legs. That seems to settle her back in. Being observant and asking questions is key. The more information the staff has the better they can deal with any quirks during the waking hours which are less and less. At least, that has been my experience so far. I get to be "the daughter" after years of being the total caregiver and it is starting to feel more natural, and freeing. I have already told my daughters to take notes. I like where their Grandmother is and that's what I want when it is time so they will be able to be daughters that enjoy visiting their mother.
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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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My husband and I used to play in a band that entertained in 9 different homes each month. I saw much neglect so tried to care for him at home for 2 years after he developed PLBD. When I couldn't handle it alone anymore, I moved both of us to Assisted Living. I am here as an advocate between him and the neglect that goes on. I make sure that he gets his meds correctly and that he eats. Rather than a nursing home, you should look into Memory Care, where people are actually trained to treat dementia patients.
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