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Dementia and Alzheimer's

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If you have a parent with dementia, how do you cope with the stress of it all?

14 replies

JustlookingNotbuying · 11/09/2022 18:04

Because, currently we are not coping well at all.
Mum is 79, dad is 80. Mum was diagnosed with Alzheimer’s in 2018.

I am not sure what stage she is in but would say it’s the late part of the early stages. As each month passes, her memory is getting worse and worse and her needs greater. She is forgetting so much.
Dad does not cope well. He is quite a stubborn man and whatever ‘help’ I have suggested over the years he has sneered at or refused but he constantly moans about how he can not cope with mum etc.
Yet he is lucky in many ways because he has both his dd’s living in the same village as they do.

My dsis works full time but pops in a few times a week and does a big clean once a week (she has her own cleaning business). I work part time so am about more than my sister (although am just as busy as I have dc and she doesn’t).

Up until last year I was doing most of the help, I was doing a lot but had to take a back seat as I made myself very unwell with the stress of it (dad totally oblivious, says I’m stressed because of my dc!), but I still do a lot.

The problem is that if I don’t help with things like washing mums hair and cutting her nails etc then it doesn’t get done (although he has, this week allowed her hairdresser to come in once a week). I refuse to let my mum look disheveled because dad can’t be bothered to help her and say things like ‘well she’s got dementia so she won’t care how she looks’. Mum always took pride in her looks.

Like I say, dad has refused many suggestions of help and after a year or so of me suggesting a carer he agreed to let me get one in for an hour a week to start with, kind of a foot in the door but 4 months on and she is still only there for one hour and just draws pictures with mum. I’ve suggested we now up the hours and get her to do some more bits such as personal care but he used all kind of excuses not to take this forward, ie he’s not too keen on the carer as she’s a smoker (she never smokes in the house of course) or she’s very expensive (She charges £22 per hour and mum has £90 per week attendance allowance and they have ££££’s in the bank ffs). He is always finding an excuse. I know he really would just be happy for my dsis and I to do it all regardless of how stressful it is to us.

He moans constantly that he has no time to himself so I got mum in a day centre for one afternoon per week to give him 3 hours but because mum doesn’t remember from one day to the next she would get confused every time we got her ready to go and say she didn’t know where I was taking her and she didn’t want to go (she was always fine when I got her there and collected her) but dad insisted we cancel it. Now all her does is moan that he can’t even have a daytime nap without mum bothering him.
It is so so stressful. I just don’t cope well. I feel sick to the stomach with it and with my own issues (anxiety, depression bad IBS and Perimenopause), caring for my own family and being a part time carer myself I literally feel like I am losing my own sanity as I’m splitting myself into a million pieces trying to help everyone.
It is on my mind 24/7 and has a huge impact on mine and my families life. DH gets really pissed off as he thinks dad should dig into his pockets and fund the help himself rather than relying on me (dad is very old school and thinks I should give up my job and dh support me!!). I understand what dh is saying and agree but he doesn’t see the predicament I am in, I feel torn as I know my parents are struggling so much.
If you have a parent with dementia how do you cope with the stress of it?

OP posts:
Hakunamatata91 · 11/09/2022 18:13

I haven't had a parent with dementia but was close to my grandparent with it, and spent a lot of time helping with him (and listening to my mum stress about looking after him). Just wanted to send hugs, and also to say that I know its easier said than done but look after yourself. You're no use to anyone if you get burned out. That may mean insisting on a carer against your parents' wishes, which we had to do as things just became unmanageable. Also might be worth checking in with social services if you haven't already to see if there is anything they can do? We had to push hard for it but wound up with NHS carers coming in four times a day, which still left a lot of responsibility on my mum's shoulders but did help. Unfortunately I think you do need to really push for it as in our experience a lot of doctors seem to take for granted that if there's family there they can provide the care even when that becomes pretty unmanageable.

OnTheBrinkOfChange · 11/09/2022 18:17

Your dad needs to be told that support goes both ways. If he's getting £90 a week for your mum then he needs to bloody well spend that on her. If that means for hours of her sitting colouring in with someone, that is fine. It's not fair on him to expect you to take on duties when he isn't prepared to do things himself.

Anunusualfamily · 11/09/2022 18:22

it can be horribly stressful. I’m coming to the end of 7 years of caring for my grandmother and preparing her for moving into a nursing home.

my advice is to try again with the day centre. Can she go for the day a couple of times a week? After 6 months of going 2 days a week, my gran got into the routine and was much more settled and would wonder off to the main room by herself just because it’s dementia doesn’t mean they don’t learn. Once my gran was going 3 days a week things became less stressful I had my own time and wasn’t worried about her.

Have a look on Instagram for dementia caregivers a lot of speech therapists and occupation therapist have brilliant tips and videos on how to manage changes in behaviour and loss of memory.

JustlookingNotbuying · 12/09/2022 08:57

Thank you everyone.
I’m chatting with a day centre this week so hopefully will be able to get mum in for a day or two. It will give dad a break and should be good for mum to keep her brain active. Dad absolutely does need to learn to spend the Attendance Allowance, it is just sitting, building up in mum’s account. It does my head in that he isn’t spending it and it’s pointless just sitting in a bank account doing nothing when mum needs so many things in place to help her.
So today I’m looking at a hairdresser coming in once a week to wash and style mum’s hair, a chiropodist to come to the house as mum’s feet are bad, call the day centre and some support for dad in some way. I’ve also got to try and arrange for a GP appointment for mum which means sitting in a long phone queue for 45 mins!
I know he’s struggling and I really feel for him but he doesn’t see all the hidden things I do for him also. It’s bloody draining.

OP posts:
Anunusualfamily · 12/09/2022 09:05

Do you have power of attorneys set up for health and finances for your parents? It may be worth looking into this before it’s too late. Do you have an age concern locally? They are great for advice and your dad may be more receptive to the information if it comes from an outsider?

countrygirl99 · 12/09/2022 09:24

Too late to get POA for your mum if not already in place but try and persuade your dad. The turn round to get registered is really long at the moment so the sooner the better.
I understand the battle about getting help in. Had the same thing but I'm an hour away with a full time job so they sort of muddled through.

JustlookingNotbuying · 12/09/2022 10:45

Anunusualfamily We do have a local Age Concern, I’ll contact them. We do have full POA.
countrygirl99 Luckily we have had full POA for a few years.

OP posts:
Sniffypete · 12/09/2022 10:48

Contact adult social services for a care assessment. See:

www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

JustlookingNotbuying · 12/09/2022 12:40

Thank you Sniffypete We had a social service visit last week but because mum and dad are over the threshold financially there is nothing they can offer.

OP posts:
Wombat27A · 12/09/2022 12:45

We're in the same situation as you but aren't able to help half as much and it's very stressful.

Mil is very dishevelled and it's such a change from how she was. We've just been sorting attendance allowance but Fil is very unkeen on any help, so we struggle to do anything really.

It is very mentally draining.

JustlookingNotbuying · 12/09/2022 12:57

My heart goes out to you Wombat27A, it really is such a difficult journey isn’t it?

OP posts:
cptartapp · 12/09/2022 13:01

I hope I don't put this burden on my adult DC.
We scrimp and save all our lives to buy in help and care as needed when older. I would think far less of any parent who is happy to let me run ragged whilst that money piles up in the bank. I will never understand that.
My DM ended up on antidepressants and BP medication doing this for my GM. It massively tainted their relationship and her memories of her.
The only option may be to step back a little. Difficult.

Anunusualfamily · 12/09/2022 14:30

@JustlookingNotbuying did they give you a copy of the assessment to see what care she needs? This might be a helpful starting point.
What does your dad do during the day? It must be quite lonely for him seeing his wife change. Are there any mens shed type groups around? Does he have any interests to get him out the house?

Ilovecoffeeandchocolated · 14/09/2022 21:58

Hi OP. I'm in a similar situation. My parent is in the early stages of Alzhiemer's. There's always something to sort out and yes it's very stressful.

Someone recently told me to put myself first and I wondered how I could do that. I managed to have a couple of days to myself and it made a big difference and I was able to deal with things better after the break.

Your GP practice might have "social prescribers" who can help with activities for your parent. Your local Age uk might have befrienders or volunteeers that can help as well with activities or just taking your parent out for a walk.

The best advice I can give you is to take it one day at a time. There will be ups and downs. You can only do so much in a day. If you have to take 45 mins to book a GP appointment do it when you can. I think the amount of things we do for parents can be underestimated so don't be afraid to tell your Dad that you need the extra help.

There might be some Carers groups you can join in your area. I haven't been able to get time off work to go to one yet.

I've had a particularly stressful day today and know what it's like. Take care Flowers

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