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will anything make a difference
Susie J.
Posted: Monday, August 12, 2019 11:52 AM
Joined: 1/3/2019
Posts: 17

We finally got LO into a care facility.  It is a  6 bed board and care but only 50% occupied.  They are suppose to be experienced with dementia/Alzheimer's. It costs $4,000 a month.  One of the reasons we chose this one is that she could take her cats with her.  This is some comfort but does not compensate for the hours of boredom.   She has been there 4 weeks and is miserable.  We brought all her familiar furniture and things for her bedroom.  It is a beautiful house and the care givers are loving and attentive BUT everything they try to get her to do to pass the time she either won't or can't do.  She is pretty high functioning on some levels but has lost all interest and ability to do most of the activities they present to her. Example... we can converse about memories, she gives excellent directions when I'm driving somewhere but doesn't know to open the envelope to look at the card someone sent her, writes the words for numbers. She lost interest in games 5 years ago.    The thought of looking for another place for her is overwhelming but I hate to see her suffer.  She can't afford assisted living or memory care and I question if she wouldn't have the same problem there.  How do we know when/if a move is necessary? Is this a lack of the facility or is this typical of dementia.  Is there a list of activities that are good for people with dementia and for $4,000 a month why should I have to do their job for them?  But my heart breaks for her, every day she tells me how tormented she is.
Posted: Monday, August 12, 2019 12:29 PM
Joined: 10/9/2014
Posts: 786

I'm not familiar with the type of facility that you describe, but, most states have professional assessments that contain detail list of what the resident needs assistance or total help with.  Based on that form and assessment, they should know what level of care she needs.  Have you talked to them about that?

I initially placed my LO into a regular AL and she did meet the criteria at the time, however, she quickly progressed with her dementia and she needed much more hands on care, so, she was relocated to a MC facility.  This really helped her and she was much more content there. She also was quite worried and depressed. Medication helped her tremendously with those things.   

I would consider some things like, is the facility able to meet her needs?  The staff at the MC were trained and experienced enough to mange the care of those with significant dementia, so they knew how to work with her, apply different strategies, etc.  They took care of her and it was such a relief. They didn't call me to do their job.  If a facility is not equipped, you might get repeated calls about her behavior or resistance to care.  That's what happened in the regular AL with my LO.  Once in MC, that never happened again.    

I will say that some PWD are just not content or satisfied, regardless of where they are or what they doing.  If she is depressed or anxious, discuss it with her doctor to see if medication would be beneficial.  Meds helped my LO quite a bit too.  But, still, there may be no way possible to engage a PWD if their brain is not able to process things properly. There is a condition common to dementia called Loss of Initiative.    I had to accept that my LO was likely never again going to enjoy movies or reading her favorite magazines.  But, we could still listen to music together.  She enjoys for me to gently put lotion on her arms,. bring her treats or show her photos. (Sadly some of these things are no longer possible, either.)  I'd try to find simple things that she might enjoy, even if it's not what she used to like, keeping mind that the progression usually means that the LO can do fewer and fewer things and is eventually not able to engage at all. 

The facility should have a daily schedule of activities.  All of those who are able can participate.  My LO's MC has things like stretching, music, movie time, games, reading, etc.  Not all residents are able to participate in all activities. There are always residents there from various stages of progression.  

I would question if you think that a different facility would make her happy and content.  I think a lot of family members try that, but, it's often a place that you can never find for her.  Sometimes, she may be in search of somewhere from her childhood or something that doesn't really exist any longer.   I hope you'll get more responses here and are able to figure out what will work best for her and your family. 

Rescue mom
Posted: Monday, August 12, 2019 12:34 PM
Joined: 10/12/2018
Posts: 1156

I have yet to find a memory care that allows pets. The thinking is, IME, if they need MC, they cannot properly care for a pet. Plus sanitation issues.

Re your bigger question....all MCs I’ve dealt with had well planned activities for residents at almost all levels, and residents are encouraged to participate. It is typical of most dementias that patients become apathetic and need lots of encouragement to engage. 

But those places are true memory care facilities (long wait lists in my area) and much more expensive. Having loving caregivers and allowing a pet, for that low of a cost where you are now, seems Huge. But Having “experience” with dementias, and dealing with them well, are different things. And, it’s true, some PWDs are never really happy no matter where they are, or, probably more correctly, their version of “happy” now is very different than what it once was.

Posted: Monday, August 12, 2019 2:37 PM
Joined: 12/17/2018
Posts: 269

Awwww, I so hear you.  

My mother used to like crafts, games, cards and helping with pretty much anything.  Not anymore.  She actually gets testy when we try to encourage her to do crafts.  My thinking is that they know they can't do it so the brakes go on to save face.

It sounds like a wonderful place you have her in.  Like you, I had high expectations when my mother went into care.  That was 2 years ago.  I don't have high expectations anymore.  The place she is in now is much better but I feel 'I still have to do their job for them'.  

What I mean by that is the keeping her engaged and entertained part.  They do a great job otherwise.  And in this place, they have more in place to keep her engaged and entertained.

What you will find with a bigger MC are more activities.  There will be music therapy, bands coming in (if it's attached to an AL), BINGO, exercise, etc. etc.   My mother responds to these as they don't require any cognitive input from her (except BINGO which she doesn't like).  If you think your mother would respond to these sorts of activities, then a move might be worthwhile.  BUT there would be the higher cost and she wouldn't be able to bring her cats.  

What I've done is hire a companion who goes in 3 times a week for 2 hours each time.  She takes Mom on walks, goes for hot chocolate, plays 'silly' games with her that Mom likes and just chats with her.

I also go in at least 3 times a week during the quiet times.

Some PWD need lots of distraction like my mother.  If she has nothing to do she feels alone and anxious.  And it's very sad to see.  Some seem OK watching TV or sitting on their own.  My mother is definitely not in that camp.  I've determined that it is what it is and I'm not going to find better by moving her.  For the care aides, it's a job, for most it's not a 'calling'.  So they do what they can but they don't go out of their way.  

It also takes time to settle into a new routine.  They say 3 months.  As heartbreaking as it is, I'd wait out that time frame to see how she adjusts.  And if you could hire a companion, that might fill in the gaps.  

Here are some things that my mother is willing to do to pass the time - these are things the care aides can give her so you don't have to be there:

  • smooth crumpled tissue paper.  Give her a pile of it and ask her to smooth it out.
  • Sort colored index cards or colored elastics into piles.  My mother can't handle more than 3 colors as she gets mixed up.  You want them to be able to feel successful so just give her what she can handle.
  • dry off her robot cat...  If I wet her robot cat's face, she will spend a half hour drying her off.  Perhaps your mother has something she can 'dry off''?
  • And the old standard - fold napkins.
I think that the care aides need to start her off in an activity, and have her do it with others so it's a group effort and she's not by herself.  It will also probably get better as they get more residents.  More people for her to interact with.

I would also talk to the facility about bringing in volunteers.  These volunteers could be pet therapy or singers or church groups or...??  There are a ton of volunteer opportunities for them to approach.  

It's really hard though isn't it?  We want to turn over care and go back to being a daughter but the pressure of them not being happy weighs on us.  I'm afraid that part doesn't get better without therapy!  There are so many forks in this road that pull on us.  If you're a person who feels responsible (as you seem to be), then it will wear on you.  I keep thinking if I could fix this, then everything will be OK.  Nope.  There's always something else.  I've spend enormous amounts of energy fixing one thing and right after something else pops up.  I'm having to step back for my own health as I was getting physically and emotionally exhausted after 4 years of trying to plug holes.  I still feel the pull, but I try to let myself be OK with things not being perfect.  I'm in therapy now to help me with that.  It's a sucky situation - for them and for us.  I wish the care could be like I see it in my head - but that's not going to happen in her lifetime. 

I wish you all the best with this transition - and your mother too.  I'm so glad she has her cats with her.

Iris L.
Posted: Monday, August 12, 2019 6:00 PM
Joined: 12/15/2011
Posts: 16198

Your mom has lost the ability to initiate activity and to follow through.  A companion to provide one-to-one attention sounds like a good fix for now.  Also, there are lists of activities for her level.

Iris L.

Posted: Monday, August 12, 2019 6:01 PM
Joined: 6/12/2016
Posts: 673

Please give your Mom more time to adjust to her new surroundings and to get to know her caregivers. A PWD needs much more time to adjust than others. It’s wonderful that she has her cats with her.

I wish you and your Mom the best!

Posted: Monday, August 12, 2019 7:11 PM
Joined: 2/3/2018
Posts: 541

Susie, she may just be depressed. And with good reason! Being terminally ill is depressing. Have you talked to her primary care doctor? Mom was prescribed a low dose of Zoloft a couple years ago and it helped her become more interested in life again.

It's dementia. Things suck. But depression may be making it impossible for her to find any comfort in her day. Treating that may help her to want to participate more.


Susie J.
Posted: Monday, August 12, 2019 9:28 PM
Joined: 1/3/2019
Posts: 17

Thank you all for your suggestions and wisdom.  I will use all of it.  I probably should have added one small fact, she is my best friend of 45 years. We are both 78, have been in the same church for 45 years, similar family situations and tragic deaths.  In other words helping each other get through a lot of life together.  How could I abandon her now??  One of her sons has a disability and now terminal cancer and I have been trying to help him help her for the past 5 years.  The rest of her family can't or won't do ANYTHING to help her and there was no one else except Adult Protective Services and court appointed conservatorship.  If I had know what I was getting into I don't know if I would have started this journey but then as you all know this disease is a process not an event that you can see around all the curves.
Posted: Monday, August 12, 2019 9:40 PM
Joined: 6/12/2016
Posts: 673

Suzie,  I’m sorry you are going through this. Your friend is blessed to have you. Please keep coming here. Feel free to ask questions and unload when you need to. There are many people here who can help you. I’m sorry her son is ill. Remember to take good care of yourself!
Posted: Tuesday, August 13, 2019 1:31 AM
Joined: 12/17/2018
Posts: 269

Susie J. wrote:
I probably should have added one small fact, she is my best friend of 45 years. 
Susie, I'm sorry.  When I'm reading from a woman speaking about another woman I assume daughter and mother.  I shouldn't do that.  What a wonderful friend you are - and it's so sad that you don't have your best friend to help you through this.  
You are doing a wonderful job.  The home she is in sounds just lovely.  Truly.  I don't know that you would do better.  
It's such a struggle with this disease. And it is heartbreaking.  Know that you are doing what you can and let it be.  At a certain point, there are only small improvements to be made for them but the cost to us is enormous.  It's always a balancing act.  

I know, easy to say, hard to endure...

 Hugs to you on this journey.

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