Caring for alzheimer/dementia parent

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First I want to say that I am responding to the OP without reading the responses so far. I will go back and read them, then I might have something else to say. I take care of my Alzheimer’s Mom. She lives with us. Its pretty far along and its not been easy. Though, the things that are hard now (bathroom habits, i.e.) are different from what was hard in the beginning. And that (the beginning difficulties) had a lot to do with talking to her. It got better when I began to “lie” to her, and I do not take it to the confessional - that’s because I do not talk to her like a person with a whole mind AND she does not take the truth very well. She has her “own” truth in her mind that is absolutely true to her and if you do not agree with it she can get very agitated. And an argument will ensue, and *you cannot win it! * Anyone associated with Alzheimers will tell you - you cannot win an argument with an Alzheimers person! You will just both end up frustrated. So we agree with her… she is soothed. And that’s what matters.
so I’m to the “lets deal with this phase”, working with Mom on contacting the lawyer to get assets protected and trying to convince her that she’ll be better of living closer to us than where she is now, etc… just stuck here on this point in my faith.
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I also want to say, you cannot convince someone who does not have an intact mind. You have to decide things for them and that is harder on you than her because its a change of paradigm with a parent. for example, I tried a long time to convince my Mom not to drive. She was fierce about it! I could not win! Then my neighbor finally told me, “When she gets in an accident it will be your fault”. And I knew it was true. Did I want someone handicapped for life because I did not want to be rude with my Mom and assert myself?That finally convinced me. And she can handle it. In the same way, you might have to decide what is best for your mother, where she should live, and just say, “We are doing this”, and not ASK. Because you cannot win that. She is comfortable where she is familiar, will prefer to stay with that, and cannot make a rational decision.
 
JRKH said:
I’ve mentioned humor in my previous posts and how important it is in caring for our ADLOs.
Just to share one little way that my wife and I incorporated it.
My wife was a RN who specialized in acute care psychiatric - plus her dad also had Alzheimer’s. So when her memory issues started showing up we got her diagnosed pretty quickly (hoping it was something else - treatable).

Anyway - She was diagnosed early and she was able to pretty well comprehend at that time. Of course the memory issues continued, things would get lost etc. We didn’t blame it on her…It was Al. It was Al Zeimer. He kept hiding things and moving things around and such. Whatever the issue was, it was Al’s fault.

Not only did we get a chuckle out of it but so did our friends. It helped us all to keep things in perspective. The things that were happening were the disease, not the person we loved.

Little things like that can be a great help.

Peace
James
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This is a beautiful post. Considering your wife knew exactly where Alzheimers takes you.

My mom is in the early to middle stages. She lives in an independant living home. She believes it is temporary and she will go back to her house. I don’t argue any of it. She is unaware of her condition, and the truth would devistate her since we cared for her uncle in his last stages. She has been to a neurologist and told her diagnoses but is in complete denial of it. I have gotten 15 phone calls in a day with the same question, and repeat the same conversation over and over within a short period of time. I took her keys away and she was outraged, threatened me and the whole thing. I was calm through it.
Sometimes she will notice she is having memory problems and she gets distressed, I just say some days are better than others, today is just a bit worse than usual. It calms her.
Independant living- assisted living situation has been a godsend. She loves my kids, but loves peace and quiet too. After a few hours at my house the activity and noise really put her out of sorts she also is allowed to have her dog live with her.
The only tip to add here is I have my kids think of things to talk about before we see her. This is to avoid the same questions over and over, we also try to keep her busy either out doing something fun, or playing games like banana grams, mad libs, and Uno. We keep jigsaw puzzles handy to give her something to do.

And a big yes to humor.
 
petitfleur said:
This is a beautiful post. Considering your wife knew exactly where Alzheimers takes you.

My mom is in the early to middle stages. She lives in an independant living home. She believes it is temporary and she will go back to her house. I don’t argue any of it. She is unaware of her condition, and the truth would devistate her since we cared for her uncle in his last stages. She has been to a neurologist and told her diagnoses but is in complete denial of it. I have gotten 15 phone calls in a day with the same question, and repeat the same conversation over and over within a short period of time. I took her keys away and she was outraged, threatened me and the whole thing. I was calm through it.
Sometimes she will notice she is having memory problems and she gets distressed, I just say some days are better than others, today is just a bit worse than usual. It calms her.
Independant living- assisted living situation has been a godsend. She loves my kids, but loves peace and quiet too. After a few hours at my house the activity and noise really put her out of sorts she also is allowed to have her dog live with her.
The only tip to add here is I have my kids think of things to talk about before we see her. This is to avoid the same questions over and over, we also try to keep her busy either out doing something fun, or playing games like banana grams, mad libs, and Uno. We keep jigsaw puzzles handy to give her something to do.

And a big yes to humor.
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That is all great stuff - and reminded me of something else…

One year we were at the store around Valentines day. They had some cute little stuffed bears - the real squishy kind. He had a little shirt on with a heart on it. I grabbed one just for fun. Well when we got home and settled I gave it to her and the next thing I knew she was trying to pull his little shirt off of him. It was attached by just a couple of stitches and I didn’t want her to tear the stitching on the bear - so I snipped them.
She’d pull the shirt off, then try to put it back…generally NOT the same way it came off.
It got be a game and I started going to the Dollar store and getting things to put on him…Elastic hair bands and bows, a little baseball cap, infant socks. Anything that I could dress him up in. She would gradually pull it all off. Then I would redress him and repeat…This went on for a couple of years.
In fact, the very first time she went into hospice she was still doing it. I told the folks there that, “Her job is to undress him and your job is to dress him”. They got a laugh out of that.

Finding little things that they can do…anything at all that works…is a good thing.
In fact you can find list online of things to do with Alzheimer’s patients…
Folding towels is one…
I use to blow up balloons and we’d bat them back and forth (she tired of that one pretty quickly…🤷
When she was still pretty good, we’d count change - - which of course never came out right…😃

I should google this - - I know there are lists…

Peace
James
 
you’ve gotten some very kind and helpful responses already- I can only add in my own perspective on top of it all. My grandmother has lived at a memory care unit for over 2 years now, she is in good health despite being 95 years old and her brain failing. Humor is certainly essential but compassion is number one. My mother (her daughter) struggles terribly with balancing between caring for her ailing mom and treating grandma like an infant… it’s awkward and sometimes embarrassing. Caring for a dementia patient on your own, in your own home, is beyond full time work and takes all your attention! Thankfully for us, she has the means for a place to live with full time care. Without this, I can’t imagine how we would handle it all.

As far as the lies/misdirection- when Grandma for instance insists that she is not 95 years old- all we can do is say, “oh you’re right Grandma, that was a mistake”. I decided, why argue? She can’t get her mind clear. There is a little church near her home that sometimes she says, “That’s my church, I walk there on Sunday mornings.” Which is of course not true, but why contest it? So we say, how nice, Grandma, I am sure it’s lovely. She sees her fellow residents as either young children or teenaged girls- and no, I don’t correct her there either. It’s pleasant for her to go on in conversation about things that don’t really make much sense in the real world, but feel real to her.

On the other hand, I’ve often fretted about what I would say if my uncle died, as he has a heart condition and recently had surgery. I felt like I would say nothing, that he would just not visit for a while. I couldn’t picture finding the words to tell her that her son died. A lie of omission, yes, but giving an old, ill woman the grace of her age and peace of not knowing… but worth bringing to the confessional.
 
JRKH said:
That is all great stuff - and reminded me of something else…

One year we were at the store around Valentines day. They had some cute little stuffed bears - the real squishy kind. He had a little shirt on with a heart on it. I grabbed one just for fun. Well when we got home and settled I gave it to her and the next thing I knew she was trying to pull his little shirt off of him. It was attached by just a couple of stitches and I didn’t want her to tear the stitching on the bear - so I snipped them.
She’d pull the shirt off, then try to put it back…generally NOT the same way it came off.
It got be a game and I started going to the Dollar store and getting things to put on him…Elastic hair bands and bows, a little baseball cap, infant socks. Anything that I could dress him up in. She would gradually pull it all off. Then I would redress him and repeat…This went on for a couple of years.
In fact, the very first time she went into hospice she was still doing it. I told the folks there that, “Her job is to undress him and your job is to dress him”. They got a laugh out of that.

Finding little things that they can do…anything at all that works…is a good thing.
In fact you can find list online of things to do with Alzheimer’s patients…
Folding towels is one…
I use to blow up balloons and we’d bat them back and forth (she tired of that one pretty quickly…🤷
When she was still pretty good, we’d count change - - which of course never came out right…😃

I should google this - - I know there are lists…

Peace
James
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Thank You for the touching stories. We are still early in this journey. We took my Great Uncle home to live with us during the final stages of this when I was 13. I know where this ends, and it is heart breaking. It’s nice for the little reminders. I am grateful my mom does not recognize what she has. I don’t think she could cope.
 
Sorry about your mom’s diagnosis. Please take the time to read about Lewy Body Dementia, though, and see if it sounds like a better fit for her symptoms than Alzheimer’s does. A lot of people are misdiagnosed at first. You can find info at www.lbda.org
 
savedbygrace71 said:
you’ve gotten some very kind and helpful responses already- I can only add in my own perspective on top of it all. My grandmother has lived at a memory care unit for over 2 years now, she is in good health despite being 95 years old and her brain failing. Humor is certainly essential but compassion is number one. My mother (her daughter) struggles terribly with balancing between caring for her ailing mom and treating grandma like an infant… it’s awkward and sometimes embarrassing. Caring for a dementia patient on your own, in your own home, is beyond full time work and takes all your attention! Thankfully for us, she has the means for a place to live with full time care. Without this, I can’t imagine how we would handle it all.

As far as the lies/misdirection- when Grandma for instance insists that she is not 95 years old- all we can do is say, “oh you’re right Grandma, that was a mistake”. I decided, why argue? She can’t get her mind clear. There is a little church near her home that sometimes she says, “That’s my church, I walk there on Sunday mornings.” Which is of course not true, but why contest it? So we say, how nice, Grandma, I am sure it’s lovely. She sees her fellow residents as either young children or teenaged girls- and no, I don’t correct her there either. It’s pleasant for her to go on in conversation about things that don’t really make much sense in the real world, but feel real to her.

On the other hand, I’ve often fretted about what I would say if my uncle died, as he has a heart condition and recently had surgery. I felt like I would say nothing, that he would just not visit for a while. I couldn’t picture finding the words to tell her that her son died. A lie of omission, yes, but giving an old, ill woman the grace of her age and peace of not knowing… but worth bringing to the confessional.
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I can see the delema here. I would try not to think about it unless it happens. Sometimes being in the moment and the situation it just clicks with what I need to say. I am sorry I know th seas you feel about this.
 
Talked to a dear priest friend of mine and he boiled it down to, treat her with dignity, meet her where’s at - at the moment, sometimes an oblique answer is better than the direct truth, pray and that he’d be there for me for the emotional and spiritual rough spots should they occur but that he had faith that God would help me and mine to walk thru this chapter in life.

Humor,
Ice cream,
PhD in Geometric Diversity,
Anti-zombie meds,
2nd washer and dryer (almost need that now with the four kids),
Faith,
and your prayers…

Think I got it, :confused:

in case anyone missed it… today’s reading, one of my favorite passages in the bible… and the first link in my sig 😃
 
z_0101 said:
Talked to a dear priest friend of mine and he boiled it down to, treat her with dignity, meet her where’s at - at the moment, sometimes an oblique answer is better than the direct truth, pray and that he’d be there for me for the emotional and spiritual rough spots should they occur but that he had faith that God would help me and mine to walk thru this chapter in life.

Humor,
Ice cream,
PhD in Geometric Diversity,
Anti-zombie meds,
2nd washer and dryer (almost need that now with the four kids),
Faith,
and your prayers…

Think I got it, :confused:

in case anyone missed it… today’s reading, one of my favorite passages in the bible… and the first link in my sig 😃
Click to expand...
👍

Good Luck…And we are here if you need us…

Peace
James
 
I am so sorry you have to go through this. I went through it with both mom and dad, mostly my sister stayed with them through it all, since i was in Africa. However, the 6 last months of Dad’s life were really excruciating, for him and for us.

As to having to tell them one thing for another, I don’t view it as lying, because their minds just do not function… There comes a point when they can refuse to even stay in the house, because “it isn’t theirs” and it is the one you grew up in. Or worst yet, they don’t recognize you anymore, and that one is the most painful because then you’ve lost their trust. We have a duty to protect them as much as we can, so if we have to say white for black and they accept that and it saves them from injuring themselves, then we have to do it.

An important thing to remember is that your job as care-giver will be very heavy and you need to look for an Alzheimer Support Group that maybe once a week someone will come, or you can take her to a home that will look after her for a few hours while you do something you like and just relax. There is good help out there, it is just a matter of finding a group that you can trust to respect your parent. I will keep you both in my prayers
 
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