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Mother is 91, has a BIMS score of 6 (severe cognitive impairment). She's in memory care, and has lost most of her short-term memory, and is down to a small amount of her long-term memory as well. Once in a while, she'll have an episode where she'll say something totally delusional, but she knows us still.
She fell recently and fractured her elbow in 2 places. She's experienced a couple of complications (edema, cellulitis), and is having quite a bit of discomfort. They're attending to her well, though. She's in a wonderful facility.
My thing at the moment is that until the past few weeks, she's done a lot of walking every day. She hates being alone in her room, so she cruises the hallways, shadowing the staff (to their consternation). But I'm sure her heart must be pretty strong. She says she is certain she'll live to 100. She's just stubborn enough to do that. But I don't think her mind will last that long.
We go once a week to spend 90 minutes with her. She is very sweet (went the opposite way to some dementia patients), and I love that part, but it is exhausting to go each week unless I have some thematic something to show her. I've brought old family photos, pictures from trips we took as a family when I was growing up, photos of her life with Daddy, etc., etc.
I'm running out of things to do or show. My situation isn't grave, and doesn't come close to being burnout. Just bewildering, frustrating and sad. She was a good mom - I think she had the same mood disorder as I do. Not always kind, but never abusive. And then there were the days when I'd come downstairs and she'd greet me with a cheery "Hi, Pretty Girl!" Those were priceless times.
I guess I'm not looking as much for advice as I am just to give voice to the deep sigh I have dwelling in my chest, remembering that tomorrow is Sunday yet again, and I'l have to come up with something to chat about once we get done with discussing the chapel service that morning (she watches on closed circuit in the common area with others). My husband and I live a fairly mundane existence, and whatever is not mundane, we wouldn't discuss with her, because it's not always positive. And she doesn't remember what happened that week, naturally.
So, anyway, here goes: Sigh.
The End

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yeah, I'm at a loss for words, too. I got nothing. sorry to waste your time, just thought any response would help
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Nonni2012eli Dec 29, 2019
Thanks for reading it, though! That counts, in my book. Like I said, I wasn't really looking so much for advice (but I'm grateful for what has been offered). I just needed to get that "awwwwwwww" whine out of my system to someone who can understand. And yes, I know I will miss her when she's gone - I already miss the lady who raised me. And I miss my dad, who was fun and funny clear through his injury (car crash) and ensuing downward spiral over 2 years. I'm not ready to be a daggone matriarch!!!
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We struggle with the same issue with my MIL. She's in a LTC facility and sometimes remembers things from the short-term, but so difficult to have a conversation with her as she doesn't watch news or remember anything recent. Last month I brought her old letters that she kept written by her son when he was in the service. We had to read them to her but she enjoyed it. We show her pics we took on our phones/iPad. We find funny animal videos to show her from YouTube (she really likes those). She used to be in a main floor room that had a bird feeder out her window so we'd watch that activity together and comment on it. Honestly I struggle with if it's benefiting us more than her since she won't remember the visit. Just do what you believe/feel is right and don't feel guilty over it or second guess yourself. There's no right answer here. After she passes you don't want any regrets and you get to decide what that means. Blessings. May you receive peace in your heart.
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Nonni2012eli Dec 29, 2019
That's wonderful. Until Daddy died, they traveled the entire country and were over in Europe and the Holy Land some years back. We've brought those photos - we have a thing that lets us put a flash drive in it and then it plugs into the smart TV in her room, so she can watch it like a slide show. Only downside is that I have to 1) remember to do it; 2) leave time to get it arranged; 3) make the display. Sometimes I'll do Windows MovieMaker and make a little show that way. When I remember to do it and have time, those are really fun for her (I think - she's too polite still to tell us they're boring). It's just a matter of thinking about it before Saturday night. This week, of course, was chaotic with the holidays, and we were gone all day.
Well, we'll see if we can come up with stuff. And, yes, she does prefer talking. She still sees the other residents as "old people," and would rather talk with the staff. So she's on the call light all day to get someone to come in and sit with her. We have to have a topic of conversation. My brain is empty right now. haha
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Do you have to talk all the time?

Maybe you can load her in a wheelchair and go touring the facility. Just sit and be together.

Maybe not stay quite so long.

If she is able, a child's game to fill the time or a made up game. Like spotting every green shirt or hat. Silly stuff.

I played catch with a soft stuffed animal with my granny and she really enjoyed it.

It really becomes about having a good time in the here and now. So anything that brings a smile to her face will bring one to yours.

I hope you find some way to enjoy your visits. It is such a difficult disease. Hugs!
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Nonni2012eli Dec 29, 2019
We gave her an animatronic cat that she, at first, was agitated about (how can I take care of it? Where will I put it? Etc.). But she's grown used to it. Kitty (she named it Mary Ellen after her favorite aunt), and likes to pet her - it's in a window by her bed, so the kitty gets nice and warm. It purrs and mews when you touch it - licks its paws and rolls over for a tummy rub.
That gives us something to keep her mind busy.
She had a wicked (sometimes raunchy) sense of humor, and that does show up once in a while still. She's embarrassed by her incontinence, which - hell, I'm only 65, and have to watch out for sneezes, and eating the wrong foods. I will NOT be too proud to wear Depends when it gets to that point! :)
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I often say my mother will live to be 100, but then I remind myself that she can turn on a dime as she has so often in the past. At almost 93, another bout of pneumonia can do her in, or another fall, or just about anything, really. She too has dementia, scored a 10 on the MOCA test in May, is still functional, but wheelchair bound with lots of issues going on. She's survived 36 falls so far in Assisted Living, and 4 in Memory Care. Her quality of life is diminished nowadays and I know she's tired of the daily struggle.

My husband and I go visit her every week as well and feel the same way you do.....its excruciating to come up with small talk she can follow that doesn't cause an argument or get twisted around by her in some way. It's gotten that way on the phone calls too lately. She's always been a negative and depressed human being with nothing good to say about anyone or anything, and dementia has only worsened her moods, unfortunately, making the visits nothing to look forward to. I've used the word Dread in the past.....

Seems to me that food helps....eating it, bringing it, watching her eat it, talking about it, taking her out to eat once in a while if shes up to it. It's a distraction, and distraction is the goal when visiting a dementia sufferer. If we bring her a giant cupcake from Gigis, that kills half an hour right there...lol. TV is out because she's mostly deaf and the volume is SO LOUD it's unbearable. Sigh. Sometimes I'll bring her a rag magazine which she can thumb thru without too much need for concentration. If the weather is good, we'll take her for a roll outdoors and spend some time in the fresh air.

Gold luck.....I know how tough this all is, and you have my empathy.
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Nonni2012eli Dec 29, 2019
We bring big bags of candy. She loves it, it makes her happy, and the MC is fine with it, as she eats nourishing food well at meals. I just wish I could eat as much as she does and be the size of a bird. But maybe when I'm 91....
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Nonni,

Maybe you can change the dynamics of your visit. I would find it exhausting to come up with a “thematic something” to share with my mother each time I visited. It’s too much like homework!

I think it’s wonderful that you have made such an effort to come up with things to interest your mother, but every visit doesn’t have to be so interactive. Sometimes you can go just to be with her.

I visit my mother several times a week. I am now retired, and this is part of what I do. Our chats may last about five minutes. What all can happen in a few days or even over a week? My mother, too, is hard of hearing and is often hard to understand now. She is often delusional also, so our conversations are very limited. I know she just enjoys my presence. I may keep her company while she eats a meal, or play Bingo together. Often I bring something to crochet, work on a crossword puzzle, free up space on my iphone, or show her any new pictures of grandchildren and great grandchildren. Sometimes I bring her a meal and we eat it together. And..... sometimes we just sit. We may go to her room, where I spend time tidying it up. We also watch old TV shows together. She really can’t hear or cognitively follow them - she just likes the companionship or normalcy. I never go to visit her with the thought that I have to entertain her. I know she likes to see me, and it’s good for the staff to know that I am overseeing her care. When she was independent and living at home, I did not visit her so often, but now that she is so vulnerable and frail, I feel compelled to see her frequently. I understand dreading the visit. The worst part is the walk from the parking lot to the front door of the facility. I pray for God’s grace and power to accompany me. Doing so has helped tremendously in my attitude because by nature I am not very nurturing.
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Nonni2012eli Dec 30, 2019
Those are good ideas. It's just hard to know what will work. I was a preschool teacher for 30 years, so themes are ingrained in me. It works well as I find things to go with them.

There is just no normalcy for Mother. Her life consisted of 62 years of being the preacher's wife - that, in itself, was a full-time job - and mother to 2 young girls. Once Daddy wasn't around for her to accompany him everywhere, she didn't know what to do. She no longer enjoyed the things that they used to do together, like traveling. She won't leave the building other than doctor visits when she has no choice. They'd been all over the world together! She can't stay focused on a book. Plus, she has an eye condition that can't be corrected without hard contacts, and those were getting to be a great source of stress and expense, so her eye doctor gave the release for her to no longer wear them. She doesn't see that well anymore. As an artist, that's been hard for her, as has the tremors in her hands that keep her from drawing anymore. Nothing is as much fun without Daddy. She goes to activities and is beginning to not mind hanging with the "old people" in the common area. So it's not a bleak existence for her.
I'm just tired and ready to be free to take an entire week or at least weekend off without wondering if I'm going to get a phone call from the facility (or one of my kids). My hair has gotten so gray, and I refuse to color it. It's my silver medal. I had to turn the gold one in.
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The thing with a Dementia is that it "kill" parts of the brain. They die. When its in the final stage, it starts to effect breathing and heart. Doesn't matter how healthy they are, when that part of the brain dies so does the person. There is no brain to keep breathing and the heart going. On my Moms death certificate, it says heart failure. My Mom had a strong heart but Dementia stopped the beating.
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Nonni2012eli Dec 30, 2019
I am hoping that it's a matter of going to sleep one night and slipping away quietly to go see Daddy. There's a hymn that has the words
"And I'll be waiting on the far side banks of Jordan
I'll be sitting drawing pictures in the sand
And when I see you coming, I will rise up with the shout
And come running through the shallow waters, reaching for your hand."

This is how I picture the moment her soul leaves.
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My MIL has staunchly maintained that she will live to 99-1/2. Until the last 4 months, I thought she probably, through sheer stubbornness, would in fact do so.

She got a UTI which landed her in the hospital and developed pneumonia. 6 weeks in the hospital & nursing home. I don't speak to her, regularly, and so I did not see her for quite some time. I saw her last week and the decline in the last 6 months has been unbelievable. She screams at people--never a 'nice person' but now the natural filter is completely gone. She's absolutely an anxious wreck, but b/c of her mobility issues and the fact she's supposed to be on oxygen (tubes trailing thu the house and she's on a walker)--they won't give her anything for the anxiety. It's truly horrible to see her, she's literally out of her mind. (Had DH told me what a trigger I am to her, I would NEVER have gone with him. Just seeing me, in her house, gave her a massive panic attack.)

In her case, one more fall, one more UTI and she will placed, against her will in a nursing type facility, Luckily she can afford a very nice one.

But her health, aside from the anxiety, is pretty OK. Drs think she might live another 5-7 years.

To me, she is dead. The person I knew (and feared) died with this last health problem. She can't and won't talk to me in a normal tone of voice, so I now have to steer clear of her.

DH and SIL were worried about the 'brain damage' brought on by the UTI, and dr says it's probably permanent now.

What is the value of living when you get like that? It's just so sad.

MY mom has most her marbles, but can barely walk. Spends all day, everyday, in her small apartment. Takes 2 strong people to get her to make the one step down the front door to get to a car.
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Nonni2012eli Dec 30, 2019
I feel so badly for those whose loved ones have turned into either meaner people, or from reasonable people into tantrum-throwing grouches. Mother was not a pussycat. I went to my dad for the warm-fuzzy hugs and support, and I really miss him (7 years gone), but now, she's got a very sweet disposition 99% of the time. She can be a pain in the butt on that call button, and shadowing staff, but she's never cranky about it when she gets corrected!
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I just read all your responses, have you thought about finding an online news source and talk about the odd and bizarro stories from those.

Look for those little books that talk about what happened in a specific year, then choose ones that have meaning, her birth year, daddy's, yours, the year she graduated high school, college, got married. You get my meaning. They can be recycled for future visits, that is the 1 good thing about cognitive function being less, you can have the same conversation again and again. My great aunt was on a 20 minute loop of stories, we knew what she was going to say and as long as we made noises that we were listening she didn't really need us involved.
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Nonni2012eli Dec 30, 2019
These are great. I may try to see if I can do a DIY job of transferring our 8mm movies onto digital (taking a movie of the movie screen) and show some of them to her.
She remembers nothing about herself. I wish she did. She was awesome. Like I said, had a mild bipolar condition, but never mean. Just happier some days than others. Snippy or weepy during depressive episodes.
The most amazing thing about her was her intellect. They grade-skipped her (out at a country school, no less) so she went straight to second grade, reading at a third-grade level. Even being a year younger than the rest of her class, she still graduated from high school as valedictorian!! I did NOT inherit that part of her DNA!
Is there anywhere on this site where photos can be posted? If not, that's OK, but I thought it would be fun to put faces with the stories here.
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How about songs? You could get a list of old songs from the internet, and ask her which ones she liked and can remember. For subsequent visits (could be organised in a big batch in advance), play her the song and then talk about the singer. You can get their life histories easily from the internet. Play it again and sing along. Music memories can last a surprisingly long time. It might provide other topics of conversation as well – what does it make her remember? Dancing, concert, etc. Other movies with Bing Crosby? This would take a while to set up, but it could last for weeks and then get done again when it will seem fresh.
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Nonni2012eli Dec 30, 2019
These are great ideas! You always are so helpful!
She watches old episodes of Andy Griffith over and over. She's beginning to forget how to use the remote, so that probably will end soon. I think one of the girls comes in to get Lawrence Welk started for her on Saturday evenings once she's bathed and in her jammies.
We do sing together a lot. Hymns, or silly songs - she does remember the words to those. My dad made a CD when he was an active pastor, singing hymns and the proceeds went to black churches in the south that had been hit by arsonists. She listens to that and sings along.
I went through Ancestry.com, and need to print out her family tree (both sides), as they go all the back to Switzerland and Scotland. She may lose interest by the time I get to the 1800s, but that's OK. She loves looking at the photos. Any time something is kind of humorous, she'll say, "Oh, naughty me." LOL
She is a stitch, but I just get tired of every weekend visits. I work during the week still (retirement - what the hell is that???), so appreciate the time I can spend with hubby on Fridays through Sunday. The fact that she faces a weekend with no visitors with nothing more than sticking out her lip in a fake pout really helps me feel less guilty. I told her today what she used to tell us when we pouted. A bird will sit on her nose and poop on that lip.
We were a funny, weird, deeply loving bunch!
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Nooni

I know what you’re talking about. My dad is 89, no short term memory and long term memory is very delusional now. But he’s calm and sociable. He likes to sort stuff. Coins, wirenuts (He was an electrician) cards with cars on them. I always tell him what a big help it is. It’s always the first time for him. I also have really old family albums and he can still name most of the people and tell stories about them but it’s hard to tell fact from fiction at this point.

Everyone else in his facility is on his level as for dementia but he is still ever so mobile still. The staff really has to watch him.
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Thanks to everyone for responding to my whine. It's a weekly thing. We won't be there next Sunday, but she seemed OK with that. She has a great little CNA who loves her and vice versa, and she said she'd make sure to remind her.
My sister lives 4 hours away, so she only gets over here once a month for a couple of hours. And they'll soon be moving to New Mexico which is 18 hours away. I'm guessing she won't even be there once a month anymore. (I'm not bitter. Well, maybe a little. She also doesn't have kids to help babysit for, so that's kind of a trade-off.) She does her best. I'm not mad at her. Just wish I could live my dream, like she gets to.
Listen to me bitch. I'm going to bed. I think I'm sun-downing! LOLz
Thanks, all! Love to everyone!
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Great part is they don’t remember. So easy to do things that seem fresh to them. As per suggestions, I used to time one visit so that near the end there was a programme dad liked watching so could leave with him happily engrossed. Though as he continued to deteriorate that didn’t always work.

Music, and little things to fiddle with. My dad was an engineer so in his case a few spare cables for him to unravel then tidy - he knew there were things he used to do with them - could see his mind working - but he’d forget and just tidy them again. I’d deliberately push the lens out of my sun glasses and he’d happily “fix it” for me.

One of our memories was shelling peas - risk assessment meant couldn’t have a knife to peel cooking apples but could still use a peeler. He loved ‘helping prepare the meals “ and would at meal time comment how nice the peas/ potato’s / apple pie tasted that he’d “helped with” That I actually took what he’d done away with me was irrelevant - the staff knew and agreed / went along with it as it gave him so much pleasure.

I even got a toy cat - one that reacts to touch. Irony was the home got a real one shortly after, and it liked to go to dad’s room seemingly to sniff/ visit the pretend one and fortunately let dad pet him whilst there!

By rotating a few simple things it kept the visits fresher and dad happily occupied.

Theres been some great suggestions here - hope you find some work for your visits
regards,
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