First my dad, now I think my dm has it too. Just a pitiful small rant

(56 Posts)
Kenworthington Tue 03-Dec-19 21:29:13

Fiuuck. I feel like we’ve been dealt a properly shit hand.
Dd has Alzheimer’s and vascular dementia, diagnosed 10 years ago and he’s been in a home for just over four years. Last Monday was told he is now at the end and is now not eating and sleeping a lot. He may have weeks left.
Now I have been getting more and more concerned about my mum and I’ve realised after the last couple weeks that actually I think she has it too. I’m living in some sort of Groundhog Day. I’m answering the same questions over and over again every day. This evening, over the course of an hour, she phoned me THREE times to ask me if I was coming to see her tomorrow. THREE. I see her every day. I can’t do this again. I just can’t. It’s not fucking fair.

OP’s posts: |
Entschuldigung Tue 03-Dec-19 21:37:41

That sounds so tough. My Dad had dementia and died last year. I'd be devastated if it happened to my Mum too.

Do you think there's any chance the shock of your Dad entering the final stages might be having an odd effect on her? Clutching at straws!

avocadoze Tue 03-Dec-19 21:39:19

flowers

Pilipilihoho Tue 03-Dec-19 21:41:29

Oh no, OPsad Nothing to add but flowers

WhoKnewBeefStew Tue 03-Dec-19 21:41:44

Oh I'm so sorry OP, I can't imagine how awful this is for you. I lost my Mum this year to vascular dementia, thankfully it was a short illness. Not a great deal to say, just thanks

GooseberryJam Tue 03-Dec-19 21:42:02

Sorry this has happened again OP. My dad also has the same mixed dementia as yours and moved into a care home a short while ago. What professional support does your mum get? Is she still in her own place or in the care home?

Paddy1234 Tue 03-Dec-19 21:45:38

Dementia is absolutely cruel ❤️

I know it seem silly but if it has come on quickly - you need to rule out a UTI as often the same symptoms x

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Kenworthington Wed 04-Dec-19 07:51:28

Thank you all for your lovely messages. Sorry I went to bed after posting. What terrible form!
Currently my mums support is Me! There is no one else.
She’s not been well generally over the last few months, she can’t walk well now, she doesn’t go out without me. Ever. I have to take her everywhere in the car. She was getting confused with her tablets so I sorted a blister pack for her. She’s still managing to muffle them up. She’s muddled a lot. I actually hadn’t thought of a uti, because I suppose it’s been coming a while but thatsdef worth a check because she’s been on water tablets now about a month so perhaps that’s caused something. I am going to try and get her to see a doctor regardless. If it turns out she has it too, I really really hope it’s quick before she gets to the shell my dad is in. sad

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Medievalist Wed 04-Dec-19 07:57:35

Also came on to say uti. Definitely get that checked. My dm had dementia for about the last 3 years of her life so you have my absolute sympathy and I understand your horror at the thought of going through it again.

Thesispieces Wed 04-Dec-19 08:00:19

You have my sympathies. I have been there and am there again. Nothing beat this in terms of the misery it inflicts. There has been no respite, as like you (suspect) this is occurring ‘back to back‘ for me too. the second parent didn’t show symptoms until the last stages of the Disease for the first so there may be something in that. But it changes nothing. Pace yourself and start getting diagnosis and agencies involved that may offer support as soon as possible flowerswine

Kenworthington Wed 04-Dec-19 09:25:46

Oh I’m so so hopeful it’s a uti. I’ve made an appointment this morning for her atthe gp. I have already picked up the sample pot so I’m very hopeful. I’ll update thanks so much

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Kenworthington Wed 04-Dec-19 14:42:05

Well. We went to doctor this morning. Not her usual doctor. But anyway. Did a dip test. No uti sad fuck I was really really pinning my hopes on that. So now another appointment tomorrow with her usual doctor. Is there such a thing as just age related memory loss?? Holding onto the faintest glimmer of hope.

OP’s posts: |
Entschuldigung Wed 04-Dec-19 19:38:27

Sorry to hear it wasn't a UTI. I'm glad you're able to get her to the doctor. Keep us posted. flowers

MereDintofPandiculation Thu 05-Dec-19 20:17:07

Is there such a thing as just age related memory loss?? Yes, there is. There's a set of questions on the Alzheimers site to help distinguish between the two. Unfortunately answering questions over and over is on the "wrong" side. But there are other things that can cause confusion - you've ruled out a UTI,but there are other infections, also medicine side effect.
www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/normal-ageing-vs-dementia

Kenworthington Thu 05-Dec-19 21:27:51

Ok so today’s gp visit resulted in her totally psssing the memory test the gp did. But the gp is concerned about her confusion and her increased wobbliness on her legs. She said she’s even noticed a marked difference so she is sending her for a brain scan. She doesn’t ‘think’ it’s dementia but I guess the brain scan will be more conclusive.

OP’s posts: |
loobylou10 Thu 05-Dec-19 21:35:51

So sorry to hear this - dementia is shit isn't it. My mum was confused and had memory loss so we went to the GP. She passed the memory test with flying colours but I insisted things weren't right so she went for a scan.
The scan showed Lewy body Dementia so you are def doing the right thing getting a scan.
I wish you great strength with what is to come with your dad and also now dealing with your mum. I'm so sorry.

loobylou10 Thu 05-Dec-19 21:37:08

Oh and being unsteady on her feet was another sign of the LBD.

Kenworthington Fri 06-Dec-19 21:55:10

Oh. I hadn’t thought of LBD. Reading up on it, that seems quite fitting. It would be helpful if I knew WHAT they are looking for in the brain scan. My paternal grandmother had LBD, misdiagnosed for years as Parkinson’s until a particularly nasty uti sent her from basically ‘normal’ to hallucinating and full blown dementia within days. Literally. I remember seeing her at her home on the Thursday, totally normal, by the Sunday my mum had phoned to say she’d been moved to a nursing home. Shocking. Oh god. I thought/hoped we were out of the woods with the dementia but I had forgotten that one and looking it up the symptoms really fit. sad

OP’s posts: |
loobylou10 Sat 07-Dec-19 08:54:24

Sorry, hope I didn't upset you but I feel it's best to have all the info. Yes, it is linked to Parkinson's which is where the unsteadiness comes from I think.
My mums developed really quickly too - from what I remember , the scan showed small white deposits on her brain (can't remember of what) but they knew from what they saw it was definitely LBD. Hope you're ok OP

Kenworthington Sat 07-Dec-19 09:19:19

@loobylou10 no don’t worry you’ve not upset me. I just hadn’t thought of it. So I guess in a bit sad that could still be an option and that’s that’s potentially what they’re looking for

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loobylou10 Sat 07-Dec-19 09:44:22

Good thanks Let us know how you get on.

Kenworthington Sat 01-Feb-20 19:19:43

Just came on for a small update. We had an appt at the hospital last week with a specialist. He looks at the patient as a whole and will be the one conducting a brain scan next Wednesday. He mentioned brain tumour and dementia. I feel like I’m going fuxking mad. I feel so alone. I’m really pissed off. I am so scared of the results from the ct scan. He’s calling me after he’s looked at it and will also see her at the memory clinic that he runs. She’s constantly calling me and I’m dreading her calls and texts. I feel so guilty. So fucking guilty. I can’t go on with this it’s so shit. I am really really not cut out for this. My life has once again become total imposed drudgery. I’m just so miserable with it all. Sorry

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MereDintofPandiculation Sun 02-Feb-20 14:29:54

Sorry to hear that. But you know what it's like, so you know how important it is to look after yourself. If not for you, then because you can't look after anyone else if you haven't looked after yourself.

Don't be feel in the least guilty if you say "I can't do this". It makes no logical sense to look after one person by another person trashing their own life. Any reproaches (real or imagined) will come from friends and relatives who have never experienced dementia - SS will try their damnedest to get you to help, but if you refuse, they will understand, as will anyone else who has had dementia in their life.

She wouldn't like to know her daughter was dreading any contact with her, so step back on your involvement to a level you can cope with.

I also dread phone calls - even now when they're a very rare event, and most of the time seeing my father is a chore or a duty, although now he is in a care home I can think of him with fondness and sometimes actively enjoy time with him. So don't feel guilty, and do no more than you can manage. Set a time during the day when you will check her texts and missed calls, and try to put them out of your mind the rest of the time - if necessary, put your phone where you can't hear it.

Kenworthington Sun 02-Feb-20 16:46:42

Thank you for your reply. Unfortunately there is literally no one else who can help out at all so I have to do it. I visit her daily now whereas just a few months ago it was twice a week. She’s really lonely I know that. My eldest ds is visiting her today for a couple hours after work but he can’t drive so is of limited ‘help’ with regards to taking her out and to appointments. It has always felt that the more I give, the more I’m taken for granted and the more she ‘expects’ and then gets down and miserable when I’m unavailable. It’s a vicious circle. God only back in the summer she was able to help ME out when I ended up in hospital with sepsis. She was even able to get two buses and walk up to my house. She can’t get outside her own front door without my arm to hold now sad

OP’s posts: |
HollowTalk Sun 02-Feb-20 16:50:26

Did your mum get a diagnosis in the end, OP? It sounds as though you've had a terrible time. flowers

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