Dementia

[kippax_blueboy]

I can resonate with this. We've moved my in-laws in with us - 79 & 82, don't drive and were becoming increasingly isolated. The old man has mild dementia and we can sense a slight deterioration in the last year. Weird as fuck, as he can remember things from 60 years ago, yet we can be watching a game and he will ask me the same question several times over the course of 90 minutes. He's nowhere near how you describe above.
Horrible disease, and I feel for anyone having to cope/care for anyone where they've taken a serious turn for the worse.

My dad can tell you his army number but not what happened two minutes ago. It's really hard to know what is going on in his head. Why is he so calm when it must be frightening for him.

 

[kippaxkid74]

To be honest not much better today. I mean during the match she was mostly vacant expression, didn't speak to me, my attempts at chatting or even a "are you ok" just got a look and a yes. And she hadn't been that bad until yesterday. My sister said she was her current self all last week, not like this.

I've just got back from checking on her, my sister is there. And mum been asleep most of today, not making sense when speaking inbetween, totally out of it. She's sat on settee now, but my sister (who i love but with the stress of this could start a fight in an empty room) is sat there and mum sat neck down staring at her feet, hot drink in hands, eyes shutting, i speak and get nothing, i speak then i get shouted at, (and trust me, i try the concerned speak, the talk about the telly speak, every variation going) my sister speaks and she gets told to leave her alone, then mum shuts her eyes again. My sister speaks to me upstairs and says do we think shes had some kind of mini stroke the last few days as it's a sudden change. We go back down, mum has spilt the drink all over herself for the 2nd time in 24 hours, my sister rants about the washing, mum wont move, mum shouts at her to go, i get told what am i doing there, my sister shouts at me. And you know what i've just done - i've just walked out. I've walked out and i've come home, cos i can't take it. I can't take it. I know - who can right? But i can't, i couldn't stay in there a minute longer. I went round to hug my mum, to sit with her, but it just starts, and i can't. I can't do this. I'm such a bad person cos i've just walked out, what if that's the last time i see my mum, i've just walked out. I want to vanish. I can't do any of this. And i probably wont log in for a bit, but i just needed to say it. So i've said it. Fuck all this. Fuck it.

I shouldn't have walked out and left them, i couldn't do it, they were shouting at each other, im stood in the house mum moved into weeks before i was born, im looking around at our life, my memories, and i just couldn't take it. I should've been stronger but i had to get out. Now i'm back here i feel i've failed mum by just going. I feel like my head is bursting. I dont know how to do this. i want to click my fingers and just pause everything, or even better find that magic rewind button.

 

[ob]

My dad can tell you his army number but not what happened two minutes ago. It's really hard to know what is going on in his head. Why is he so calm when it must be frightening for him.

I was up visiting partner's mum last week in care home. Couldn't tell me what she had for dinner hour earlier but knew every detail of a holiday in Blackpool almost 30 years ago, so sad

 

[StrangewaysHereWeCome]

To be honest not much better today. I mean during the match she was mostly vacant expression, didn't speak to me, my attempts at chatting or even a "are you ok" just got a look and a yes. And she hadn't been that bad until yesterday. My sister said she was her current self all last week, not like this.

I've just got back from checking on her, my sister is there. And mum been asleep most of today, not making sense when speaking inbetween, totally out of it. She's sat on settee now, but my sister (who i love but with the stress of this could start a fight in an empty room) is sat there and mum sat neck down staring at her feet, hot drink in hands, eyes shutting, i speak and get nothing, i speak then i get shouted at, (and trust me, i try the concerned speak, the talk about the telly speak, every variation going) my sister speaks and she gets told to leave her alone, then mum shuts her eyes again. My sister speaks to me upstairs and says do we think shes had some kind of mini stroke the last few days as it's a sudden change. We go back down, mum has spilt the drink all over herself for the 2nd time in 24 hours, my sister rants about the washing, mum wont move, mum shouts at her to go, i get told what am i doing there, my sister shouts at me. And you know what i've just done - i've just walked out. I've walked out and i've come home, cos i can't take it. I can't take it. I know - who can right? But i can't, i couldn't stay in there a minute longer. I went round to hug my mum, to sit with her, but it just starts, and i can't. I can't do this. I'm such a bad person cos i've just walked out, what if that's the last time i see my mum, i've just walked out. I want to vanish. I can't do any of this. And i probably wont log in for a bit, but i just needed to say it. So i've said it. Fuck all this. Fuck it.

I shouldn't have walked out and left them, i couldn't do it, they were shouting at each other, im stood in the house mum moved into weeks before i was born, im looking around at our life, my memories, and i just couldn't take it. I should've been stronger but i had to get out. Now i'm back here i feel i've failed mum by just going. I feel like my head is bursting. I dont know how to do this. i want to click my fingers and just pause everything, or even better find that magic rewind button.

That's a tough read. I'm really sorry for you and your family's situation.

Its not your fault though and you're not a bad person. I hope you're OK soon

 

[Cassandra]

Remember by the time you closed the door on the way out your mum will probably have forgotten everything that happened. So from that point of view the reset button is pressed.

Both you and your sister are understandably stressed out and upset but you need to work together and support each other. If your sister‘s way of coping is shouting a lot just let it go over your head or, as you have done walk away for a bit to let things cool down. But always be prepared to forgive and forget and let her know that she is loved.

It isn’t easy but keep trying.

 

[The Stockport Iniesta]

Had a horrible day today, one that made me cry so much.

So managed to get mum to the match for the first time since October - in our season ticket seats (other matches i'd had to go on my own or take my son).

I'd been ill since new years day so hadn't seen my mum since then, my sister said to just get round there early enough to sort her handbag out and get her ready. So i did, got her bag packed, made the mistake of leaving her heart spray and inhalers on the table saying for her to put them in while i went upstairs.
Came down to see the handbag was now full of 2 heart sprays, 4 inhalers, a pair of socks, a 1992 diary, and 2 unopened pouches of cat food.
I mean what if i hadn't looked and that is what we then took to city?
And then i saw it wasn't even the same handbag, the one i'd packed was now on the floor and the similar looking one was what she'd packed.
Cue her snapping that she needs all that and that the diary is this years and has the district nurse no's in for her leg ulcers. Other than it being 31 years old i checked and there was no numbers in.
So i sorted it, tried to calm her, went to the loo for a cry, and then we got in the car - my partner and our little boy drove us there (they then come home, then drive back at full time to pick us up. Not ideal, we used to us ethe tram but obviously since covid and her mobility we do this).

Problem being we get out of the car at asda mcdonalds car park, all we have to do is cross the road and across the gravel car park to the east stand. But it took 25 minutes to get to even the outer fence, as i knew she couldn't walk well but it was new to me that even with 2 crutches she was pin steps with her head down almost doubled over and tottering.
Then outside the car park fence she is hunched over, pleading that she cant go in, she wants to go home, im to get them back to take her home, shes in too much pain, her neck cant move, she cant walk. Also i'm told not to renew the seaosn tickets.

Not knowing what to do, but seeing the tears and the pain and the way it had took 25 minutes to walk something that would take me 3 minutes, i rang them and they headed back. I sat her at a bus stop. Strangers stopped to ask if she was ok, as i looked like i was giving elder abuse probably (my sister always says people will think that when she gets all upset and rants about us) . But then mum started pleading that im making her go home, that she wants to go to the match and im sending her home cos shes too slow. Which is not true.
By this point even im crying that no mum you said, you said, and i believed you. And i rang my sister who ranted at me for getting them to come back, she ranted at me how could i be sending her home did i not want her there. Its like OF COURSE i want her there, i've been trying to get her back since October.

Then my other half pulls up at the bus stop, and mum wont get in, then she does get in but wont shut the door, my son is crying, my partner is moaning about bus stop fines, and im just like mum what is happening. And after what seems like an eternity she got out, they drove off, we staggered across the gravel car park and went in.

She collapsed into her seat, while i cried to myself a lot that is this it... the first match we ever went to together in 1985 was Villa, is this how it ends, is this the end?

Full time, took forever to get up the steps, theyd locked up by the time we'd done in the loo, and it took 40 minutes to get from east stand to asda car park via the gravel car park and and mcdonalds path, and thats not her fault she cant walk, but i was holding her arm and shes doubled over and falling back and forward pleading with me are we there yet is this his car, and im like no mum this is still citys car park the statues are right behind us.

We eventually got to the car. She slept in the back, i cried in the front, i settled her in at home and my sister is there now, and my son is playing up and i just want to die.

City steward said we could take her in a wheelchair to the entrance and leave it at door D til after the match, but mum wont, shes adamant she wont. So is this it. I really wanted the newcastle match, she's 80 that week. But i can't face that again right now, ive just had enough, i cant cope.

i know the dementia thread is probably the wrong place to have another moan, but i can't.. last night near midnight she rang me saying what time am i comiing shes ready with her shoes on for the match - i had to say no mum its tomorrow, its midnight now. She sitll thinks shes magically in a house that looks just like hers but isnt, and i just cant do it. Not while being ill, having a naughty 6 year old, his school down my neck, and just wanting to stand on a deserted beach on my own and breathe and scream. Can i scream. I want to.

i love my mum. i love her. shes my world. today was the worst day ive ever had with my mum. i love her. oh how i love her.

Don't take her again mate, I went through this with my dad, sadly she won't get any better. I feell your pain, it made me a nervous wreck dealing with my dad. If you ever want a chat with someone who's been through this pm me mate.

 

[ysmsa]

The bookcase analogy is brilliant in relation to understanding Dementia,

Imagine a bookcase with the older books (memories) at the bottom, and the more recent ones at the top!

The bookcase starts to shake, the books at the top are the ones that fall first, the books at the bottom remain in place.

Don't try and understand Dementia if it affects a loved one, remember the bookcase.

 

[Blue Streak]

I feel everyone's pain in regards to this. I lost my Dad six years ago later this year to Lewy Body Dementia. It was very quick - diagnosed in April/passed in November. The rapid decline was the most shocking thing I've ever seen. God bless all of you.

 

[youngbob]

My dad can tell you his army number but not what happened two minutes ago. It's really hard to know what is going on in his head. Why is he so calm when it must be frightening for him.

I watched my granddad go through exactly this sort of thing. He was diagnosed with vascular dementia in 2015 after showing mild symptoms for a few months. He was able to live on his own until 2018. He was able to live in his home with my family for another year after we moved into his house to look after him. We had to move him into a home in 2019. He died in his sleep in 2021, ironically not from dementia but from cancer.

While I lived with him, like you, I was baffled by how he was completely unable to make a cup of tea, or even remember how to put food in his mouth, but could precisely recall his train routes from the 1950s. He was a fireman on steam engines and spent his life going up and down the country. He emigrated to Australia with my grandma and my dad in 1964 and came back in 1968. Ten Pound Poms. He remembered most of that.

I only made sense of it all when it clicked in my head that humans are only able to tell the passage of time through memory. Memories allow us to organise time in our heads. They enable us to have a frame of reference for a particular moment, or era - where we lived, who we lived with, who we were friends with, what music we listened to, what was on TV at the time, etc. Memories mean we can keep all our recollections in order.

So when your memory goes, so too does your frame of reference for time. I think when dementia is particularly advanced and the part of your brain that's responsible for memory begins to shut down, time collapses. Last week feels the same as 1943, a Saturday in 1956 might as well be tomorrow, the day you learned to make a cup of tea is as clear as a drunken night out in 1986. Next year is last week. You forget your own age. And so on and so on.

For that reason, things from those eras start to fold in on each other. Your wife, who was 46 in 1990, suddenly becomes your daughter-in-law, who's 46 in 2023. Your grandson, born in 1987, suddenly looks a lot like a friend you had at school in the 1960s. Your ability to organise memory and time in your mind is faltering and nothing can be separated. You end up viewing time a bit like the Tralfamadorians from Slaughterhouse Five, but against your will.

And the worst part is that, I think, like your dad, my granddad knew it was happening to him as well. The cruel thing about vascular dementia is that it doesn't even send you doolally until the bitter end. My granddad spent 5 years fully aware that he was behaving like a toddler but he was unable to stop himself. He used to pick up a piece of toast and then forget what the purpose of toast was. The way it ripped his dignity away made me angry.

I don't really know where this is going, to be honest. Just glad the thread is open to chat.

 

[denislawsbackheel]

Something we have found very useful was I put together a photo book of many of the occasions we had with our cousin who has dementia. Family does, trips away, weddings etc. Using one of those websites that print photo books off, I annotated every photo with who the people on them were and the date. The photo company turned it into a hard back book. I gave to my cousin and we went through it talking about the pictures. She regularly does the same now with her carers as well, sometimes at her request. Her carers say she really likes doing it.