Assisted Living pushing us to Dementia wing?

18 years ago

Hello all--

I have spent some serious time today reading your posts and admiring the courage I've found here. I'll tell my story and hope some of you have advice. I'm sorry this ran kind of long, even though it's the short version.

My mother has been in assisted living for more than 10 years. On Aricept most of that time. She has had memory issues since probably 1994 or '95. She's denfinately worse than she was then. She does not offer up topics for conversation and has stopped telling us stories of the old days, but can discuss some topics if asked, like the Tavern her parents owned.

Five years ago, against the advice of the head nurse at her first AL facility, we moved her to a new place (10-15 mins away rather than 5.5 hours). The Nurse said, we should wait until she's really lost it to move her, because there was a danger of triggering a decline. We took the risk and did so anyway with great results. She quickly adapted to the new place, dining room and room location. (Although she couldn't remember the 5 plus hour car ride after she got there!) Her room has changed several times and she can always find it. She loves to sit in the large, main room with it's atrium and windows. She does word searches every day and is still getting them right.

This may sound ghastly, but we aren't sure whether she's ever been formally assesed for her dementia. If she has an MMSE score (I learned of this test today, here) we didn't know to ask for it. I'm not sure how throrough her evaluation has been. My sister who lives nearby probably knows more though and it just may be a gap in my knowledge.

Anyhoo The facility is starting up a dementia wing and they want my mother to become a resident. They started talking to us about this at the beginning of the summer and yesterday they told my sis they will be moving mom on August 11. Now we are not sure about any of this. We don't know her actual classified status as a dementia patient, or if this is what she needs. We do know that she is content where she is, does not have incontenentce problems and quietly goes through her day, humming to herself, doing her word searches and taking meals with the community. She plays bingo the few times a month they have it. At night, she watches TV in her room. She has always watched a bit of TV in the evening and late afternoon. The new wing is not going to allow TV's because they don't want the residents sitting in front of the tube all day. We have had problems with her remembering to wash, but that has been resolved with a bit of staff intervention.

I worry that this move will agitate my docile and basically happy mother. She will loser her TV, she will lose her main room where she sits contentedly for a large portion of the day. There will be activites targeted to dementia patients of course. They are very high on a computer program that will show pictures of the past and help stimulate them. (When mom was 100% she couldn't use a mouse!) Seriously though, they are building a well thought out facility and will be a great place for her ...but maybe not right now.

If AL was good enough for her in January, why isn't it right for her now? She did have one incident where she pushed her roommate (and was later mortified when she was told what she had done, but could not remember doing it). This was around Christmas time. We feel as if we are being forced into this decision, rushed into making it, or that it is being made for us. Saving the $700 plus extra dollars would be a bonus in maintaining the status quo.

My sis is going to talk with the head next week and any input or thoughts as to how to proceed would be greatly appreciated.

Thanks,

LENVT

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Comments (12)

pfllh
18 years ago
last modified: 11 years ago
This is my own opinion on what I have observed of my husband and my mother.
The more they are not able to do the more they pull into themselves and decline. For my mother, her short term memory was gone. My brother and the doctor decided she needed to be in a nursing home. My brother has power of attorney so I have no say. The doctor is an a$$ and pretty much does what my brother asks. I talked to the doctor and was very much unimpressed. He has told my brother he knows I don't like him - poor baby. My brother sold her house and was going to sell all her things. I said some things and went home and got a lot of momma's things that had been in the family.
My mother lost all she had. They keep moving her to a different room. She gets confused and just seems so sad. She has gone downhill mentally, emotionally, and physically. I went home, asked my brother to discuss aricept with the doctor and get her on some physical therapy. She had pretty much shut down. She's on aricept now and gets the therapy. She talks now and can feed herself.
Your mother is happy and content. She has a routine including the watching TV. If me, I'd tell the Al that she will not be moved as it would be detrimental to her well being. It may be more convenient for them but its not going to happen. They receive money for her to live as she is now and that's the way it will be.
I would see about the testing if you feel it necessary and won't upset her.
I am very opinionated and vocal about how society has become in throwing away everything when it gets old including family.
Unless she became unsocial, incontinent, did little for herself, I'd leave her as is. She deserves to be treated as a human being and be respected. If the AL can't handle that, you may have to check into other options.
I'm so sorry you are having to go through this. My heart goes out to you as I know that feeling very well of it's momma and she deserves better.
Lynn
lindajewell
18 years ago
last modified: 11 years ago
Here is my story, when my mom had a stroke and was moved to a nursing home my dad could no longer be alone. He is legally blind and has mild dementia. It was suggested to me by MANY that I put him in a home also. NO WAY! he is very content in his home, sits on the porch, helps me with little chores and watches his tv at night (the best he can with wet macular degeneration).

He is also on Aricept, so right away people tend to classify him in the very demented stage. He is not and I will not allow him to be locked up in a dementia/alzheimer unit! This would kill him or at the very least cause a massive decline in his mental status. My dad still knows everyone, all the neighbors, me and others in our lives.

My advice, think long and hard before allowing them to move her. She is happy now don't let them bring her down. The day will come for me and maybe for you also, but don't push it. However do be ready to face that day when you know she can no longer be in assisted living.

Our society as a whole is too quick to "label" seniors with dementia/alzheimers when a lot of memory loss can be due to other factors, like they are just getting old! or they have had mini strokes. My dad had a mini stroke and after that is when we noticed his memory problems. However he is very continent, can dress himself, shaves with an electric shaver, brushes his teeth and as I said, helps me with little things around the house.

Sending you prayers that all works out and you can make the choice that is best for your mom.
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Sorry it's taken me so long to come back and say thanks for your thoughts. It's been kind of hectic. I managed to sit down with the nurse on Sunday and get some info. I was surprised to hear they hate "no memory deficits noted" in her paperwork. However, after I voiced my concerns to the nurse, yesterday they had a speech pathologist working with her, giving her tests for memory and thought processes. According to my mother, she was nervous about it but was relieved to find she did well. She had a great day at physical therapy also, and felt full of beans. As of yesterday, she was really psyched to go home. They are having a meeting in two days to discuss her progress; unfortunately I can't be there. But I'm going to try to let the social worker know my concerns about her living situation, so she can mention them at the meeting. The nurse said she couldn't tell me whether the diagnosis was an actual stroke, the doctor would have to. But when I brought up driving, she said after a stroke the DMV is notified and you have to be retested. Her dropping that tidbit told me it WAS a full stroke and that I would not be wrong in keeping the keys away at this point. Also, my mother eventually told me the reason she was in rehab was because of a stroke diagnoses--otherwise the insurance wouldn't have approved it. As far as the meds, she is down to an antibiotic for a bladder infection, a second round of colchicine to try and knock out remaining gout, plavix, and norvasc only when her blood pressure is up. I was actually glad to hear she had a bladder infection because that explained a lot. Several times in the past I was worried about dementia, and it turned out to be a bladder infection. (She gets them a lot.) If she was better mentally yesterday, I have to think it was partly the antibiotic kicking in. I got the application form for the sr. apartment, and a floor plan but I'm also trying to get the house in shape if she insists on going back. Oh, as far as who diagnosed the TIA and stroke. Her first one was a visual disturbance, and her eye doctor was the one who first suspected it. She told my mother to get checked out, and at the hospital she was seen by a neurologist among others. For the second episode, she was treated by the same neurologist. Don't know about a specific blood test for it, but they've done CAT scans, MRI's, an EEG, checked the circulation in her carotid arteries, can't think of what else. I'm pretty confident that they've checked everything they can, sometimes twice!
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shambo
18 years ago
last modified: 11 years ago
Lenvt, I have to agree with the other posters. From your description, there doesn't seem to be any compelling reason for your mom to be moved into the memory care unit. If she's not incontinent and can do word puzzles and enjoys watching TV, why move her into a special care unit?

You say that the facility is starting up a new memory care unit. My guess is that your mom will provide a guaranteed & immediate resident in the new unit, one they won't have to spend marketing time & money for.

I do know that in my state (California) once a diagnoses of dementia has been made, AL residents must be moved to a memory care unit. So, if there is a diagnoses, you may not have a choice. However, before letting your mom move, you might want to take her to her primary care physician for an updated evaluation. Explain the situation to him. He might even be able to revise an earlier evaluation or explain that she has some diminished capabilities but is not fully incapacitated and needing memory care housing at this time.

My experience was similar to what you're facing. My mom's AL felt she was ready for the special care unit, although she was doing OK in AL. He best friend from AL was moving there too. So I stupidly went ahead with their judgment. They assured me that she'd thrive in her new environment and there'd be a lot more hands on care. Long story short, my mother never adjusted. The change was too much and her capabilities declined even more quickly. Eventually she came to live with us for a while. That was a disaster too. I finally found another assisted living/memory care facility for her. She went through the evaluations and was placed in the AL unit. She's been there a year now. I know that she might eventually have to be placed in the memory care unit, but as long as she can function in AL, I want to leave her alone. I've spoken with the staff too and they feel the same way.

As far as I'm concerned, moving to memory care should not be an option unless there are very real compelling reasons. Your mom just doesn't seem to fit the criteria at this time. Take your time, investigate, and don't let yourself be bullied. Tell the facility that you're making doctor appointments for re-evaluation. Ask to see any records they have of your mother's physical & mental state. Discuss with your sister your fears and concerns. And then be sure to let the doctor know about them too.

Good luck. I know this is hard for you.
lenvt
Original Author
18 years ago
last modified: 11 years ago
Thank you all for your thoughtful responses. Yesterday I called the AL facility asking to speak to the director. Since she is on vacation this week, I spoke with the head nurse. The short of it is, we are not moving mom to the memory facility just yet. I outlined our concerns and the nurse was very receptive to them and very supportive. I told her we wanted some time to think about things before taking such a big step. Especially since they wanted to move her in this coming Monday!

The nurse tried to emphasize that the move isn't a "step down" for mom, but a step into a more supportive environment. I'm certain she believes this to be true-- but Shambo I had your story to give me the ability to resist the lure. Of course we want mom in an env. that would be more stimulating for her. But truth is, they don't know yet how it will all turn out because the wing is new. With mom, there were only going to be 3 residents! I can't see how that would make her feel better! She'd notice the change for sure and not be happy with it.

We are going to make arrangements to consult with her physician and get a psych eval. In '05 the al gave her an MMSE and she scored an 18. In '06 she scored a 15. The nurse cautioned me not to think only of the numbers, but consider the observational evidence too. She said they had a patient who scored a 4 on his MMSE and could still function perfectly in AL. She supported our desire for a psyche evaluation.

Whew-- looks like we have some breathing room now, maybe we always did but didn't know it. I now feel that they are supportive of our wishes and no longer pushing us. We are sensitive to the very thing you mention Shambo about once mom is placed in a memory unit, that will be our only option for her in any facility. We don't want that to happen before it's right. Of course judging that is the trick, isn't it?

Thank you all so much for your thoughtful help. Best of luck to you all.

Len
lindajewell
18 years ago
last modified: 11 years ago
Len,
You should check out the link below, has lots of useful information and will help you to understand that a memory test alone cannot diagnose.
Many factors play in to the dementia. My brother has PD, and has Parkinson's related dementia, which is different from Alzheimers. My mom had a massive stroke, her memory is not what it use to be, but again, it is not Alzheimers.

Dad is probably the worst as far as memory, can't remember what he ate for a meal, but knows everyone, is not violent, does not wander, and the list goes on. His memory problems are also due to a mild stroke and I suspect several more over the past several years.........just that mom never noticed when she was here with him.

Check out the link......

Linda J

Here is a link that might be useful: Mayo Clinic
agnespuffin
18 years ago
last modified: 11 years ago
The one thing that bothers me about leaving her where she is, she "pushed her room mate." I wonder if this was the first time that she had ever done anything like this? If she begins to show signs of more conflicting behavior, then she might need to be where there is more supervision. You really wouldn't want her to hurt another patient. Do you think she did it in anger or just as a child would push another child?

Cross your fingers and hope for the best.....but don't take chances.
Good Luck!
shambo
18 years ago
last modified: 11 years ago
Making the correct decisions about a loved one's care is tricky indeed. Agnespuffin brings up a good point about carefully watching for signs of disruptive or possibly hurtful behavior. There may come a time when the memory care unit is the best choice for your mother. This interim will give you some breathing room as you said. You'll be able to discuss in depth with your family and the doctor what you need to watch for. You'll be more informed and better prepared emotionally for the move if & when it needs to be made.

Good luck.
lyndsey_anton_tmp_com
15 years ago
last modified: 11 years ago
Has Anyone heard anything (good or bad) about Golden Living? We're considering them but I'd like to hear what some others think. These decisions are so difficult.

Here is a link that might be useful: Golden Living
sushipup1
15 years ago
last modified: 11 years ago
Lyndsey, is that a home near you? Looks to me like a big corporation, and I'll bet that every location will be a little different. Best to judge each facility against other local facilities, than top make a decision based on a fancy corporate website.

Where we are, there are a number of corporate owned AL and nursing/rehab homes, and they all have their ups and downs. One year, the state comes close to closing down one facility, and the next year, the same facility is getting the highest reviews.

You may want to contact your local Area Agency on Aging or the state Ombudsman office to get more information.
iread06
15 years ago
last modified: 11 years ago
My mother has been in Golden Living in Thomasville, GA for 2 years. It's not the newest facility in town, but it's clean and doesn't smell Overall we've been very pleased. For us, the most important aspect is that most of the staff is friendly, caring, and very patient with Mama, who's 96. The physical therapy staff is excellent. If we had it to do over, we'd definitely choose Golden Living again.

If you have time to make several visits and talk to families, I think you'll get a pretty good idea of what to expect. Best of luck! Pat
vala55
14 years ago
last modified: 11 years ago
Does she fight, does she try to get out or try to hurt someone, does her care require a lot of staff time, doesn't sound like it? From your description she is fine right where she is. I've had a lot of experience with dementia wards and I would be very forceful in your effort to keep her where she is. why take away the only positives in her life.
organic_sofia
14 years ago
last modified: 11 years ago
As long as your mother can follow directions and be cooperative with staff, she should not be moved to a dementia wing. She could really decline quickly in that type of environment. In general, residents tend not to be not so looked after in those units and interaction with people is very very low.
As far as she pushing the other resident, monitor the situation and see if it was just a one time thing.

Assisted Living pushing us to Dementia wing?

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