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I'm 4 months in as mom's (dementia) caregiver, and realize she needs to be in some type of MC facility. Although she is still strong, continent, able to get around, do personal hygiene on her own, she is very unhappy with us. She wants to go back & live w/her youngest son-who's in denial about her dementia (a very unhealthy, toxic environment). She feels she needs to take care of him since she has the income (he doesn't work). We've tried so hard to make up for removing her from the apartment, but no luck. My mom & my brother are making plans to find another place together, much against the advice of the Dr. & Social Worker. Dr. signed form declaring her medically incapacitated last year, (No POA or Guardianship) which allows me to "place her", but
HOW do I persuade her? Despite the dementia, she's adamant about not going to a care home. I'm told I can't force her, as long as she can verbally refuse.
Our home life has deteriorated significantly, with her arguing, swearing, drama, which has caused relationships to be strained. My husband and I are so overly stressed.
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Perhaps a better decision now while she is still with it.
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Moecam, I live near the Canadian border, and have a number of friends from your province. They almost didn't believe me when they learned the cost of eldercare here. I kept my mother home longer than she really should have to stretch out the funds. Yes, NH is $12,000 monthly where we are and that is for a shared room. I placed my mother in an assisted living facility where she has her own little apartment with no kitchen. So far it is $6, 000 a month and i dread a change in health that would mean AL wouldn't keep her. I went through this process at the same time as a friend in Canada placed his mother. It wasnt easy for either of us, but he clearly had an easier road financially.
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Trainer, I struggle terribly with this & similar issues. My mother has relied on denial to cope with many painful things in her life, and it continues to serve her. I don't even know what she knows from one day to the next, one hour to the next. When my mother had to transfer to the LTC floor after her 3 months of rehab were over, we said it was the "Skilled nursing unit." As if she didn't know she was in a nursing home! I've been terrified of her reactions to other residents with dementia, like the woman who becomes weepy when she is without her "baby," a doll that sits on her chest most of the time. Imagine my surprise to learn that my mother feels only compassion for her. One day my germ-phobic sister almost lost it when my mother did her friend the kindness of kissing the baby. My sister tactfully asked our mother to refrain from such public demonstrations of affection! At the same time she disparages many with whom she cannot intelligently converse, but has found people with whom she has things in common, including the progression of their illness. This is in sharp contrast to the embarrassment & shame she experiences with some (remaining) old friends.
A helpful admissions person at an excellent not-for-profit place at which my mother is on the wait list told me that when my mother no longer knows who her children are, she may be ready for a memory care unit.
I have found some special people on this journey who have shared their hard-earned wisdom. It is worth trying to find people who may know about things you haven't thought of. Like finding a community that could accommodate each of your needs. I met women who had apartments in Continuing Care Retirement Communities, while their frail and/or cognitively impaired husbands lived on the same campus in Memory Care or Skilled Nursing.
And Ren1935, of course most places are terribly expensive. Even so, I found a place that has a new pavilion for their Memory Care residents, & they accept Medicaid same as their skilled nursing unit does. Remember, none of us have a road map for this journey- or even a GPS! We don't have to go it alone.
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Lucy you need diamonds to pay for that place at $10,000.00 a month - when I first read it I missed a '0' - our Ministry of health sets the amount people pay with small additions for private rooms - I pay $2,380.72 a month for private room for mom - but our health care system is much better in Ontario - I read many of you who seem to be bled of money by a for profit health care system & my heart bleeds for all of you - I am aghast by needing to be careful of spending money 'in case it exceeds what medi-something allows'

I feel that this is the money a person earned & as long as they are capable they should indulge in a few treats like taking a niece to lunch or having a pedicure [which in older people is NOT a luxury] - however once unscupulous people come into the pix then that's another story

Speaking of which - after a friend died she was getting all sorts of mail saying 'your name will be in a draw for XXXX' & 'you may have already won XXXX'  - we had a hard time getting rid of it all - she has been much impressed with the Singapor return address & paid thousands of dollars to stay on their good side - but it was locally mailed which we found out to be by how much postage was on it - so we started sending it back unopened with 'RETURN TO SENDER - UNSOLlISITED MAIL' - IT WORKED ! - we only chose the out of country addresses & once they paid for return postage they took her name off the list - calling, writing etc didn't work but that did - I hope this helps someone
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trainer - I agree with the others who said it might be easier for her when she can still learn or retain new information. Generally our mother can find her way to her room (she was first one to move in a newly rebuild facility, early January of last year, so I chose the first room next to the "living room type area" which is next to the dining area, and there is a bathroom between!). Sometimes she has to ask for help getting to her room, but most of the time she has no problem navigating now that it has been a year (seems to be a slight loss if we have an appointment that takes her away for a few hours, but it does come back later.) She was probably a cross over between mild to mid level dementia at that time. She's regressed a little in time, and seems to have forgotten (thankfully) her last residence (9 months of asking and begging to go back home.) Since this is your wife, you could spend more time with her after the move, so that it won't seem as drastic for her.

If she questions the move, your response depends on how much short-term loss your wife has had. If she can forget what was said in a matter of minutes or even the next day, I do like what LeeCaregiver1 said to his wife: "I told my wife she was going to Memory Rehab and they were going to help her with her memory." Little white lies can work some magic. Just keep telling her that she has to improve the memory and the doctor will decide when she can go home...

If she has not regressed enough to buy those lines... I'll have to think about that (perhaps someone else or even you has some lines to cover the move!)
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Ren1935;

Being together for 62 years (bless you both!) will certainly make this decision so much more difficult for you. You absolutely should NOT feel guilty if you make the decision to move her. At your age, tending to her needs should be left to younger, more physically capable people and it would free your time up to spend your remaining time together in more meaningful activities!!! It will be difficult as you indicate she is sometimes at the point of not knowing who you are, but in those moments when she does remember, wouldn't you rather be sharing good times with her rather than cleaning up or dispensing pills? Also, the times she does not recognize you will likely increase and will add and/or cause anxiety for her if she views you as a stranger. If you come to visit her, you can be her "suitor"... play into the older memories she will have of you. Join her for meals. If they have nice outside grounds, stroll with her on nice days. Share quiet times. Read to her. Watch old movies you both enjoyed together. Quality time, not quantity (but you'll have more quantity time to spend with her anyway if you relegate these tasks to the staff!!)

My mother more often than not thinks my daughter is one of her cousins (mom is 94) - my daughter, in asking about if/when to visit, said she doesn't really care WHO my mother thinks she is, so long as it is not someone she hated sometime in her life! So, even if your lovely wife does not recognize you, you can still spend more quality time with her (so long as you don't become one of those hated old memories!) than you can if you have to be caregiver (house cleaning, cooking, bathing, cleaning up after her, taking care of all those things that require your time.) That time is better spent just enjoying what time you have left together!

Read and reread LeeCargiver1's post! The response he got from that director was priceless!
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LeeCaregiver1 - what you said:
"After interviewing 6 memory care units one of the Directors said to me, "All the thing you do now with her-dressing, bathrooms, bathing, feeding her, medications we will now do-you just provide the Love" When i was told that it was like this weight of the decision was lifted off my shoulders because I said,"I can do that". I told my wife she was going to Memory Rehab and they were going to help her with her memory. I came every day and spent time with her and fed her one of of her meals up to the day she passed and I was there with her and she knew I was there."
was just so true and touching! If one can afford the costs (not everyone can sadly), yes, absolutely, let someone deal with the day-to-day drudgery and FOCUS your time on BEING there for the love of your life! Being able to just enjoy what time is left, sharing meals together, watching the sun rise or set together, enjoying soft gentle rain or snowfall, marveling at spring's rebirth, summer's joy and warmth - just be there to provide all the love you can while you can - that is soooo sweet!!

Perhaps your post can help sway anyone who is undecided and on the fence about committing to this!!
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I agree Lucyinthesky. I’m having to face the fact now that my husband, who has fronto-temporal dementia, may not be able to stay home with me, and later home health and hospice taking care of him until the end. My biggest concerns are what is best for him/what would he think about moving (I’m 99% sure he’d hate it) and how to afford it if we do. It is truly a nightmare situation.
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jacobsonbob - absolutely what you said. Many times (depends on the type of dementia) short-term memory loss is what shows up first and gives us a hint that something is up. Forgetting where you left something, or why you came into a room, or difficulty dredging up a word or name is NOT dementia. As we age, most all of us will experience these brain farts! Forgetting what you said or did and repeating this over and over is NOT normal aging. Because of the short-term memory loss, people can forget to take their medications or even take MORE than they should because they forgot they already took it! Forgetting to take it is bad enough, but taking too much can be deadly. Along with the short-term loss is generally inability to learn/retain new information. This can impair a person's ability to live alone, without help. We used cameras (only to monitor non-private areas, so we would know she was up and about, eating meals, and could check on who showed up), as well as a pill dispenser. Although this helped and allowed us to leave her in place for a while, it became more apparent to me that she needed to have oversight or be in a safe place.

The definition of cognition definitely leaves a lot on the floor for someone with dementia. From Wikipedia: 'Cognition is "the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses". It encompasses processes such as knowledge, attention, memory and working memory, judgment and evaluation, reasoning and "computation", problem solving and decision making, comprehension and production of language."' Someone experiencing dementia cannot meet some of those criteria and it gets worse over time.

The word COGNIZANT is defined as "having knowledge or being aware of." In that sense, yes, someone with milder or mid stages of dementia still retains cognizance, but only for people, places and activities that reside in longer term memory. Eating. Bathing. Talking. Older relatives and residences and activities remain. Our mom still knows who I and my brothers are. She has had issues with recognizing my daughter (somehow she must look like one of mom's cousins!), doesn't seem to recognize my son and can never remember his son's name (he just turned 2). It was not really clear that she was no longer cooking foods (relied too much on frozen dinners, but she was adamant that she was independent and could cook.) We tried bringing in help, initially just for an hour to check on her, ensure meds were taken and provide some company, but after a few months she refused to let them in. I also took over all her bills and anything requiring paperwork several years ago as she was making too many errors (except the federal things, which require their own forms, not DPOA.) Asking about moving was met with TOTAL resistance (did not matter if it was AL or with one of us.) We were in the process (literally days away) from moving her when she injured her leg. She knew she injured it, but could not tell anyone how she did it AND was not "cognizant" enough to realize it was serious (judgement)! When one brother was visiting from NC, he found multiple coffee cups in the fridge - she would forget she made it, put it in there for later and later make another, etc. Since the move, going through everything to clean the place out, it is more clear that she was in need of this move even before we managed to do it!

She moved into the MC place last January and a few months ago, after many months of asking my brother when she could go back to her condo, she asked me if I could drop her off at her mother's place (passed on about 40 years ago), and when that did not work, she asked if I had a key to the place they lived previously, sold 23 years ago! So, she still retains "knowledge of" or is "aware of" some things, she still maintains her own self-care, but cannot remember that she repeats things over and over in a matter of minutes, cannot learn/retain new information, is losing some more recent memories and some things just plain confuse her. This is why I pushed for MC (younger brother wanted/insisted on AL) - she would not remember where things were, how to get from place to place within the facility and might even walk out the door and get lost (or worse) because of the short-term memory loss (Strict AL is NOT set up to handle people with memory issues.)

So again, yes there is a difference, but they are related and the losses accumulate until that cognizance is also gone. Then basically all that is left is the involuntary actions - heartbeat, breathing, etc, but eventually those are lost as well. It is, in a sense, the reverse of the start of life. First there is a heartbeat, then breathing, eating, eliminations. Learning new things while growing, becoming more and more independent. The whole process is very disheartening and sad. Although I would not wish this on anyone, I am thankful that mom had a fairly long full life (she turned 94 last year) as I am seeing others in her residence who are MUCH younger and reading about many who have early onset - this is robbing people of 10, 20, 30 years or more of a normal life.
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It certainly is a very, very difficult decision to make. One that my sisters and I agonized over for a very long time. My Mom passed away from Alzheimer's in 2008 and my Dad refused to put her in any type of assisted living center or nursing home and chose to provide all the care she would need which wasn't easy for a man of 76 years old, but he did it without any complaint. After Mom passed away, my Dad was diagnosed with the same horrible disease. It was so very hard to take him out of the home which him and my Mom had built some 20 years ago even when things became evident that he needed to be somewhere other than home. In a way we were lucky in that the ultimate decision to place Dad somewhere was taken out of our hands when Dad had a stroke and had to recover in a hospital which was also part of a assisted living center. For a very long time Dad would act and speak like our old Dad, able to hold conversations on the phone with me and go about his daily life without any assistance, but things quickly progressed in the other direction. To let him know that it was best if he did go to an assisted living center was the most heartbreaking thing anyone should have to go through. Sadly my Dad recently passed away while he was in the assisted living center. I can begin to tell you the pain I feel as my best friend is now gone. I read somewhere that "the saddest moment is when the person who gave you the best memories becomes a memory". I hope that God will give you peace in making this difficult decision.
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Ren1935
Thanks for addressing the elephant in the rm for alot of us. The financial aspect of the move to any facility. If we are being honest their money is now our money. Who has $10000.00 a month which is what a NH in my sm town costs. That will get spent down rather quickly & then we are Medicaid eligible which scares me. I have used Moms money on her & keep receipts to prove it but what if????? That whole process is intimidating & from what I understand one false move in the last 5 yrs could get her kicked out??? That would be worse than placing her there to begin with.
I consulted an Elder Atty .....he assured me I was on track but I still have that fear factor of spending her down to nothing & then where does the $$$$ come from should I be forced to bring her home. What would become of my future? Does anyone know if this could really happen?

Again if we are being honest..aren't we just hoping for a peaceful end @ home & in the process just barley hanging on to our sanity & our health as we continue to care for a loved one who's health is declining rapidly. I am so mad @ the healthcare system who tells us to keep them @ home but don't give us the tools or support to do so.
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It's such a personal decision. A large part of the decision has to do with the caregiver. It is an ongoing, day after day, sleep deprived, exhausted, lonely existence. We caregivers are dancing on the head of a pin, and one misstep, the whole family comes crashing down. It might be the flu, a broken leg or a heart attack. 40% of caregivers die before their loved one. It's better not to wait for the disaster to occur.
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Do you think you will be a better caregiver, a better advocate for her now that you can concentrate on HER as a person, as your WIFE, as the person you said you would care for in sickness and in health, not as a "patient".
By placing her you can care for her as a Husband that is more relaxed, more in control, not as stressed.
This is not to say you will have no cares, your cares will be the same you will also have to manage the people that care for her 24/7. But when you visit you will not have to worry about changing a brief, will not have to get lunch ready. You can have someone change the brief, someone will make lunch and you both can sit and enjoy lunch together just as you have done for many years.
Your life as direct caregiver ends your life as an advocate continues.
I am sure you spent many sleepless hours trying to decide if this was the best choice for both of you.
If you can go to bed at night, put your head on the pillow and tell yourself in all honesty that you have done the best that you can do for both of you...that is all anyone, including you, can ask of yourself.
Sleep well.
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One can be cognizant and still forget to take their meds or how to prepare meals, to wash themselves and wash and change clothes. These are things I count on the memory care staff to help my friend with--and they do a marvelous job. They also provide group activities that stimulate memories, which he chooses not to participate in. He is proud and doesn't like games or to be found lacking. But he is happy--and cared for. This is what I want for him.
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Memory care in a good facility is very expensive. I have the family name on the room list and have refused to have my wife move in four times now as a room has bcome available. It is very difficult to move ones loved one away without feeling much guilt. But I know the time is approaching very fast. This morning, as in most mornings and the middle of the night, my wife awoke me by punching my back and ribs and wanting to know who I was. Then she rolls over and back to sleep and doesn't remember any of it. At one time during the night she ask me where XXX,me, was and I told her he would be back shortly. That seemed to satisfy her for the time being. A new world every day as I am the only one to care for her. But, back to your question.. I am finding it very hard to to make the moving decision. Perhaps a little time....We have been married for sixty two years and that does make it more difficult.
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I agree with some of the responses. It was one of the hardest decisions I had to make and it was heartbreaking but it was the best decision. After interviewing 6 memory care units one of the Directors said to me, "All the thing you do now with her-dressing, bathrooms, bathing, feeding her, medications we will now do-you just provide the Love" When i was told that it was like this weight of the decision was lifted off my shoulders because I said,"I can do that". I told my wife she was going to Memory Rehab and they were going to help her with her memory. I came every day and spent time with her and fed her one of of her meals up to the day she passed and I was there with her and she knew I was there.
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I’m so glad you asked this question. As others have said, The best time to move into memory care is before the advanced stages of dementia. More cognizant residents can establish friendships, get to know staff, and adapt to routines. Imagine how horribly disruptive it is to make a move when you can make no sense of even the most familiar environments. That said, I firmly believe that people with dementia live better in memory care, regardless of where they are on the spectrum when they move in.
Have your spouse assessed. It’s possible that s/he could start out in assisted living or at least do a trial stay in AL.
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I'm in the same position. My husband cannot remember 5 minutes ago and barely remembers me, but he knows his surroundings!
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I'll admit I'm not knowledgeable about memory care facilities, but aren't memory and cognizance different components of one's mental abilities? Can a person become impaired with one but still retain at least some competence in the other? "I can't remember much but I know I need to eat, wash, etc. and am still able to do so."
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I do not have the answer. I am struggling with this one also. What to do, what to do, what to do?

Re
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I agree with the above people - I have noticed most women wear clothes that I would say are suitable for going to the grocery store etc because as one lady said 'I got rid of all my work clothes because I'm not mopping the kitchen floor ever again!'

Going in while still able to know about some things is easier on the resident as they transition better - it is a fine line know when to make the change - good luck & be aware that you will also have a transition into a new routine of visiting her instead of hands on caregiving
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All the things that worry your spouse - in my Musm case it was keys, shopping, cooking, washing are removed and thus - in my experience her life becomes more enjoyable. Able to concentrate on things she enjoys and as the other contributor says making friends and getting to know her way around. 7 months in she is so happy, hard as it was in the beginning to make the decision, it has been the best result we could have imagined.
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Trainer, Barb above is right. Better for a person to move into a continuing care facility while they can still learn their way around the building, learn their apartment, learn the Staff, and be able to meet new friends.

My Dad went from Independent Living to the next building which had a Memory Care floor. And the building was set up very similar. The 3 shifts of nurses were the same person, same with the Medtech who would give Dad his meds.

Just make sure your wife is able to bring to her new room the things most important to her. For my Dad, it was his 200 books which made the place feel more like home.
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It is generally considered best to place folks in memory care while they still have the cognizance to adjust to their new living situation.

I don't have personal experience with this as mom went from Independent Living to a NH due to a stroke and broken hip.
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