Dementia

kippaxkid74 said:
Mum did it again tonight, 11pm Christmas day, my sister was about to go home (she'd been there all day. Me, my son and his daddy were there for 4 hours in the afternoon - she'd seemed ok, her usual ok but a bit off or distant gaze at times).

my sister says 11pm Mum started crying panicky that she wanted to go home (she was home), that it's not her house. And to make it harder she named the house she wanted to get to and she said the correct address, i.e. this one, shes lived in for 48 years, she didn't say her childhood address or anything like that. My sister calmed her down, stayed longer, but then went at midnight and rang me. And me being me ie easily upset and worried, I rang mum, doing my disguise chat of just chatting normally, and my mum said she watched telly at my sister's tonight. I said no you haven't been out you were at home, and then she quoted the same line of the address being round the corner.

so it was Xmas day and I'm losing mum. It was hard today, my 6 year old is very problematic right now and didn't want to go round, and then was rowdy and disruptive whilst at my mums, and I tried to focus on being with mum on Xmas day and trying to calm him and give him a childhood xmas. And we came home, and I just about cheered myself up and played games with him and things.

But then my sister shared the news, and it's brought me back down. She also snapped at me and put the phone down (my sister) that I'm not going to mums tomorrow I was staying in to try and help the problems here in my own home. So she's bitter as if she's doing it all for mum and I'm not, but I do it too, I just can't tomorrow. I promised id stay in.

it's all not f air. I'm really not coping. My 6 year old son has a two week referal for a lump in his neck that we're waiting for the hosp appt, and also been so so badly behaved for a month that a day out last week was absolute hell and when we got home I just sat in the toilet crying for as long as I could while my other half did his tea.I

But yeah, just needed to bedtime vent that just as I hoped I could have a Xmas day pretending in my head it was ok and I could remember being the little girl with my mummy, mum did the "it's not my house" thing again.
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Stay strong, people on here do care and can even offer somewhere to vent and some tips. Best of all it's guilt free because everyone is in your corner.

Our Christmas day wasn't as stressful, but as we've done pretty much the same thing for a decade now the decline due to dementia was really quite evident and saddening. A lot of 'why are we here' and uncovering the facts like she's barely eaten for weeks because she's forgotten how to cook most food or that she spent Christmas Eve wandering around not able to find her relatives houses (that she's visited just days before).

We have a 6 year old,and an 11 year old also. Their perceived ungratefulness over presents and time spent with family can be quite grating, but deep down you know they don't mean it, they're just kids. They have no idea it was much different and mostly only live in the moment.

We're also under some expectation to bring her into out house. It's an odd feeling, you never want to turn your back on your family, on your parents especially after all they've done for you, and we could manage I am sure with a bit of Feng Shui and maybe the kids sharing, but on the other hand I fear it would impact the girls terribly. Create chaos in a home when we have SATs tests going on, teen years fast approaching and we are al constantly on the go with work, after school clubs...let alone the confusion and fear it could create for herself by being in a new place. We're not equipped mentally for it at all either and worry it would make things worse. Is that selfish? It feels really bad but something tells me it would make it worse for everyone.

Does your sister understand your situation? The need to protect those closest to you is a powerful one, but would it really actually improve things for anyone? For you for having to live with and take care of someone who may no longer recognize you soon, and for her being in a new place, the impact on your son and you as childcare, which is a hugely important and demanding role in itself.

We're applying to care homes as we know she can't take care of herself and the risk of something happening is growing every day. A ray of hope was that we spotted some tablets she was on can cause memory loss, but when we managed to get an appointment and raised with her doctors it was pretty much shot down as us clinging to something in hope.

I'm just glad we gave her the majority of a day where she was sat there happy and content, ate well, got presents and spent time with her grandchildren. The fact that today she'll probably have no clue it happened and tell us her brother who passed recently keeps ignoring her calls, well that's for later.

One thing we have found makes it manageable is spending a defined amount of time with her, it helps remove expectations and worry. For example a walk out together for an hour followed by a cuppa, tea and strictly together on a Saturday as she can follow the competition progression and the girls get to stay up later to watch it. But it inevitably means later bedtimes as you're shipping her off and feeling guilty when you should be putting children to bed, and you still worry the entire time you are not there.

One funny Christmas Day moment though, if we're allowed with dementia, was the absolute refusal to have custard unless it was decaffeinated, and there's absolutely such a thing because she bought a big pack from the shop earlier. Solved by heading back into the kitchen and getting a new bowl. Worked on the kids when fussy about food, works still now ;)
 
Just to share some “dementia comedy”….

Won’t come across as funny as it was, but believe me it was hysterical. On Xmas Eve me and my son did Heaton Parkrun and the missus had asked me to stop at her parents‘ house on the way home to collect the sausage rolls that they always make as snacks at Xmas. They only live in Bury about 10 mins from our house. Collected them and came home and the missus then asks did they not give you the Xmas crackers as she’d got them for us too. No, I said and the missus called her mum to tell her she’d forgot to give them but it was fine just bring them when you come for Xmas dinner, and then tells her to come to ours for 3pm on Xmas Day for dinner. It’s my father in law who is bad with dementia but we’ve started to get the feeling the mother in law is heading that way too.

Anyway, roll on a few hours, and I’ve got a roofer on my house who has just finished, it’s about 2.45 and he’s asked me to pop my head out of the attic windows so he can talk me through the work he’s done. As he’s doing so I can see our back driveway and I see the in laws wandering down the drive with bags of stuff, I assume of course they’ve just decided to drop off the crackers and whatever else they’ve brought, presents etc.

5 minutes later after finishing with the roofer I come down the stairs to be met by my ashen faced missus who looks like she’s seen a ghost, whatever is the matter I ask….

Her mum and dad had turned up a day early for Xmas dinner, tinsel draped over them etc, wishing the missus and kids merry Xmas as they came through the back door, never once crossing their mind that all the shops were open as they drove to our house, everyone out and about as they always are on Xmas Eve, no cooker on in our house or table set etc, they’d had telly and radio on but nothing had registered, ffs they’d even seen me and my son that morning and never thought it was strange we didn’t wish them Happy Xmas etc.

They didn’t half scarper quickly! Wanted to get away before I’d come down due to the embarrassment, lol.

Anyway, on a positive note, as I’ve mentioned in here a few pages ago about my dementia journey with my mother starting, we were dreading yesterday, my mum is deteriorating pretty rapidly, but we had a lovely day - we sat the 4 oldies at one end of the table, my son deserved a medal for keeping the chat going and keeping them all talking so no awkward silences, and they all had a wonderful time.
 
bluetonium said:
We're applying to care homes as we know she can't take care of herself and the risk of something happening is growing every day. A ray of hope was that we spotted some tablets she was on can cause memory loss, but when we managed to get an appointment and raised with her doctors it was pretty much shot down as us clinging to something in hope.
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I don't think you are selfish at all. I had the same situation and poured all my energy into finding the very best care home for mum. We eventually found one that was brilliant and she spent five happy years there before she passed last year. They were able to give her a standard of care that I could. Proper 24 x7 supervision. The relief when she moved there and we knew she was safe was incredible. So for heavens sake don't feel bad. The only bit of advice i have is make sure you look at a bunch of care homes.They are not all the same. Make sure have a guided tour and a set of questions to ask. If you ever need any more detail on what we did, dm me any time. Best wishes mate.
 
My Mum is now 96 and finally we had to make way for 24/7 care and she is now in a wonderful care home who only look after patients with dementia.
It had been a struggle for my sister in the main and wife who had been looking after her for some time. She couldn`t walk in the end and living with upstairs property the toilet and bedroom were a no-no.
We thought she probably wouldn`t cope in the care home and would be constantly asking for both her family and home. How wrong could we be.
She knows our names but has no recollection of any of her grandchildren and not once has she mentioned her house etc.
She did make us laugh the other day as I mentioned to her, that with the grounds being very wooded that maybe she might have seen squirrels.
She looked at me and shook her head saying "Alan you know full well I don`t like Spring Rolls !!".
At least she`s happy and enjoys the company of the other people who are staying there.
 
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.
 
Thank you you two, i'm still crying, think i'm going to have a long bath and just try to go blank.
 
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