Alzheimers and the Elderly

[LadyShea]

Goodness Petra what a wonderful person you are, taking on the role of caretaker, and what great friends you have to agree to shuffling dwellings like that.

I think hearkening back to being the mother of a young child is a very good plan of action, very pragmatic. A young child forgets what you said within 5 minutes, and instructions and teachings must be repeated many times-over weeks and months- to be retained, and meltdowns/agitation are best handled with diversions and distractions...perhaps this is how she should be treated? Maybe get some DVDs, simple games and puzzles, writing tablets, etc. to divert her attention to when she is struggling. Take your cues from Zoes toddlerhood. If you need some reminding PM or email me as I am going through this with an almost 2 year old, ya know? I truly think there are many parallels.

I wonder if part of the reason many caretakers lose it is because they strain to maintain things as they were, rather than adjust to the person and situation as it actually is. For example forgetting your mom, really try not to take those things so hard within yourself. It's sad, but it is what it is. Caretakers are known to be vulnerable to depression and stress, so really try to maintain perspective (in that you understand you can only do what you can do to mitigate the situation, you can't "fix" it), take time for yourself and Zoe, and enlist -or at least accept- the help of whomever is willing to jump in.

As an aside, Alzheimers is the most horrible disease and I hope they find the cause and effective treatment soon. I would rather deal with a loved one having cancer I think.

[LadyShea]

Sorry I am sick of editing when I have new ideas so I am posting again. Some things I would consider trying:

1. When she is lucid, explain her illness to her. Have her write down or tape record her name, where she lives, names of friends, describe her illness to herself, memories she wants to retain, her life story etc. Perhaps reading or listening to her own words to herself can be beneficial. If nothing else you and your mom may end up with some kind of record of her life.

2. Offer her many small choices every day. Do you want to wear the red or the blue sweater? Do you want to watch movie A or movie B? Do you want to sit in the chair or on the sofa? Do you want water or tea with dinner? Shall we walk by the lake or in the woods? This may help her feel she has some level of control of her life.

[Petra]

Hey, thanks, guys.

Things got real busy, real quick, and my time to myself has been greatly reduced, and will lessen even more after the end of this week when summer school vacation starts.

We are almost organised, and Lyn is settling in to her new apartment very well.

It was touch and go there for a while as my sister wasn't ready to move, but I had a deadline on my place as I had given notice some weeks beforehand and new people were going to be taking over within a day or two of my departure. I'd already had Lyn in a home, so I had room to move for the last couple of weeks and Heidi's almost daily postponements meant that Lyn was getting ansty in the home after so long and starting to call everyone, and dad and Fiona were riding my ass about what was happening with her! (Their phone number is in the book, mine isn't. Uh-oh.)

Anyway, the day finally arrived when I was coming ready or not, and dad and I rented a truck and moved my shit. So the garage is piled up high, as my sister hadn't moved, her friend the builder was crashing there 'cos he was working so many hours at his job as a builder, and then doing the same hours all over again for my sister, and so he and his HUGE, young malamout/staffy cross were staying here, too. And I had to get Lyn. lol. So, anyway, Heidi slept in her bed, Lyn slept in the spare room on a spare bed, Zoe slept on an air mattress, Tony slept on a pull-out couch thing, and I slept on a mattress on the floor, amongst the spill-over-from-the-garage-chaos of two quickly moved households! We did that for two weeks. I fell off the wagon. Lyn was confused and lost and wandered the hall at night, shuffling her chain. It was really hard, and really fucking sad.

But we got through it! And after those weeks of stuff and chaos and mess and whathaveyou, I put Lyn back into the home for a couple of days after Heidi had moved out, and got stuck in. I made her place all nice and calm and sorted, and did a few things here, but not finished 'cos I'm still pottering at it - but at least I had a lovely home, with all Lyn's things put nicely into place, for Lyn to come back to. Since then, I've been catching up at my place, which presents it's own set of problems in that my mother doesn't want any of her things put into storage or sold or whatever, at all, so I have to get rid of most of my things - which is ok, I suppose, 'cos mum's things are much, much nicer than my things, but who knows how long this will last, and when I will again need to have my own things - like a couch and a bed and a fridge and shit. We'll see, I guess.

In the meantime, as we get more organised and we now have a Xmas tree up, and things are becoming calmer, Lyn is settling in and appears to be happy. She has some rocky bits, bumps in the road, but she is otherwise fine and more and more her laugh is easy. So that's good, eh?

In the late afternoon/early evening, I pour her a gin and soda with lemon, lime and bitters, and we sit on the porch (lovely porch) and sip our gin by the xmas tree and discuss times gone by. She goes for her 2 to 3 walks a day, and loves it. She doesn't remember one thing from the next, and is - I think - moving into the next phase of her cruel disease, but she delights in the moment. Sometimes she thinks Lochie - my long haired, mostly white Jack Russell is her old white poodle, Bijou. I nearly cried what she came out one night because she had lost Bijou. And when she fretted because she couldn't remember buying Bijou any food, and what was he to eat. But thankfully, Lochie is a gentle dog and knows and loves Lyn as much as I do. He schmoozes up to her often and makes her smile. And she thinks he's great fun and just beautiful. She knows he's Lochie now, though, and that he's my dog, but for some reason she had a couple of weeks there where he was totally hers, and utterly Bijou. I didn't have the heart to tell Lochie, though, as despite his ladiesmanmadskillz, he's all boy, and would hate to be thought of as a toy poodle named Bijou!

Anyway, we're getting there...

One day at a time, eh.

[Petra]

I don't know why those pics aren't showing up. Is it because they are in Miscellanea?

[Seven of Nine]

It's a wonderful thing you're doing, Petra!

I say that because as soon as my father got an Alzheimer's misdiagnosis (I later observed him having mini-strokes), his brother and my brother panicked and put him in a nursing home against his will.
It was too institutional a milieu for him to make a good adjustment (he'd never even needed a short hospital stay in his long life), so he deteriorated very quickly mentally, and since he was no longer allowed to take his customary long walks, he rapidly deteriorated physically. Then he fell and broke his hip, so now he's in a wheelchair.

I still feel guilty as hell that I couldn't convince my uncle (who has his power-of-attorney) to let Dad come live with me for a few years until he really needed to be in a home. My aunt lives with my cousin even though she's nearly as senile as my dad now is, and, as a result, her quality of life is whole magnitudes higher than his.
Petra, IMO, you're doing the right thing. When she needs to be in a home, by all means arrange for it, but not before.

However, being her caregiver is stressful, and I can't emphasize too strongly that you must look out for yourself! You're going to have you give yourself more loving care than you may be accustomed to.
For instance, you may want to arrange for more home help. I'm disabled, so I have a home help aid who comes two-to-three times a week. She's great, I can rely on her, it's because of her that I can live on my own, and the fact that I have her is a great comfort to relatives who would otherwise worry about me (and with good reason).

I know how helpless you must sometimes feel because you can't halt her mental decline, so please trust me when I tell you that you are of inestimable help to her. I would have given anything to have been able to do for my father what you're doing for your friend.

I do have one small suggestion to offer:
Determine what kind of music with lyrics is most familiar to her, play it for her, and encourage her to sing along.
Because one hemisphere of the brain stores tunes and the lyrics to them, and the other also stores the lyrics, both hemispheres of our brains work together when we sing, which is a very good thing for those of us who have neurological problems. I play familiar songs and sing with them whenever I'm having a bad day neurologically. Usually, it significantly improves my functioning, and even when it doesn't, it's relaxing and fun, so it always improves my mood.

[Petra]

Originally Posted by Seven of Nine

I do have one small suggestion to offer:
Determine what kind of music with lyrics is most familiar to her, play it for her, and encourage her to sing along.
Because one hemisphere of the brain stores tunes and the lyrics to them, and the other also stores the lyrics, both hemispheres of our brains work together when we sing, which is a very good thing for those of us who have neurological problems. I play familiar songs and sing with them whenever I'm having a bad day neurologically. Usually, it significantly improves my functioning, and even when it doesn't, it's relaxing and fun, so it always improves my mood.

Ha! I played a xmassy cd when taking Lyn out to the farm last weekend, and she expressed that she loved Frank Sinatra's I'll Be Home For Xmas song when it came on. And she loves hearing Billie Holiday and Mahalia Jackson and Ray Charles on my porch at G&T o'clock. I'd make her a cd, but her ability to manage tools and technology designed later that 1985, at this point, are limited.

We're getting there, though...

[Seven of Nine]

Originally Posted by Petra

Ha! I played a xmassy cd when taking Lyn out to the farm last weekend, and she expressed that she loved Frank Sinatra's I'll Be Home For Xmas song when it came on. And she loves hearing Billie Holiday and Mahalia Jackson and Ray Charles on my porch at G&T o'clock. I'd make her a cd, but her ability to manage tools and technology designed later that 1985, at this point, are limited.

We're getting there, though...

Of course you're already playing her her favorite music, O Brilliant One. I should have known.
Perhaps you could rustle up a boombox or something which records and plays cassette tapes, as well as playing CDs? Do they still make those? I bought one in the late 90s...

[Petra]

Originally Posted by Seven of Nine

Of course you're already playing her her favorite music, O Brilliant One. I should have known.

Luckily I like old toons. Lyn isn't a huge music listener, but I am, so she has little choice when she's at my place. Heh, I just try to avoid the likes of Tool or whatever when she's around, and stick to things that won't offend or addle her delicate mind.

Perhaps you could rustle up a boombox or something which records and plays cassette tapes, as well as playing CDs? Do they still make those? I bought one in the late 90s...

Yup, she has one of those - a three in one setup - but it's always set onto talkback radio. It's bloody awful.

[biochemgirl]

Yes, I have to echo the sentiment, please take care of yourself too. Alzheimer's is all too hard on the loved ones that are effected by it. Enjoy the time that you have with her, especially where she is still aware of who you guys are. My grandma died in Oct, her Alzheimer's had progressed very rapidly during her last two months. The last time I went to see her she didn't have any clue who I was and almost got violent with me. I hate that that is what now sticks out in my mind. All I'm trying to say is it's a very noble thing you are doing, but also don't be afraid to ask for help when you need it also.

[Prince Vegita]

The best advice I've heard regarding taking care of an AD patient is to learn to love who they are now, because they're not the same person you used to know. That's not true all at once, but it is increasingly true over time. And the unfortunate consequence of the disease is they really only live "in the moment", so who they are right now is all you have to work with. They may remember something from their college years one day. They may not the next, or ever again. Eventually, they place labels from their distant past on what's around them as a means to get by, as you've already seen, but they forget the experiences that shaped their lives. They forget who they are.

You did the right thing with the move. At some point, an AD patient becomes a danger to themselves and those around them (e.g. when my grandmother left the stove burner on full blast and went for a walk). You may have to consider a home someday. Don't feel bad; the person she was would understand. The person she is now, however, might need the more intensive care.

[Petra]

I think I'm starting to fall apart. I'm tired and depressed and in real need of a break.

Please, no one say "I told you so". I'm just, you know, getting it out an' that.

* Petra primal screams

*sigh*

[Dingfod]

Hugs?

[Petra]

Yeah, I'll take hugs.

[Dingfod]

[Petra]

Thank you, Dingdarling.

[lisarea]

Hugs from me too, Petra.

[livius drusus]

Still no time off, Pets? What happened to the plan where she spends a day a week in the facility? How about your sister or mother stepping in to help once a week?

[Petra]

Thanks, Lisa.

She's so completely lost without me now, and I'm in desperate need of a lively party with some young people or something. Last night out was January 2nd, when I got to see Supergroove play at Mt. Maunganui. I rocked out hard in the moshpit - like it was my last day on Earth . I need another one o'them kinda nights.

Oh, where did all the young people go?

[Petra]

Originally Posted by livius drusus

Still no time off, Pets? What happened to the plan where she spends a day a week in the facility? How about your sister or mother stepping in to help once a week?

My sister is in pain with kidney stones - she gets 'em bad - and my mum is in Europe.

And both work fulltime and have busy lives.

I'm on my own, kiddo.

[Doctor X]

Very late on this. Not much to add other than all of your feelings are natural. Me Mum went through the same thing with her Mum . . . who went through the same thing with her Mum!

So, in lieu of anything practical you have not already heard:



--J.D.

[Pinecone]

[vremya]

Hugs from me too.

Can you get an agency to help you out with some respite care? Even for an hour or two?

[livius drusus]

Is there an Alzheimers society or support group anywhere in your area? Someone's gotta have some resources to help you.

[Stormlight]

[Petra]

Thanks, guys.

There is some respite care - day care for one day a week, from about 9ish to about 3ish. We're on a waiting list for it, and she should be able to start after an agent from Support Net comes to give her an in-home assessment. I received a letter this morning with an assessment appointment for March 5th.

Sometime soon, though, I'm going to have to put her in care for 2 or 3 days, just so I can run away for a bit and go see friends out of town to kill the stir crazy I'm suffering from.

On the upside, I saw WINZ this morning and they are happy to pay for me to do a correspondence course in Photography, 'cos I told them that if I do this now, then when Lyn dies I will be able to pursue a career in product and advertising photography. They were quite happy with that, and so have paid my course fees. Yay for socialism!!!

As for Lyn, she no longer knows the different coins of our currency, and has reverted back to pounds and shillings. And she needs me to make every decision for her, no matter how small - what she should wear, when she should get showered and dressed, and gets very panicky sometimes. But at least she no longer is concerned about returning to her own home anymore. It's been a couple of weeks now since I last had to explain to her why she can't go home. Whew!

We'll push on through.


Thanks for the support.