Dementia has ruined my life

[Bigpromotion]

I know that sounds dramatic and all about me. It’s not I promised but at the same time I feel trapped in some kind of emotional, mental and physical cage because of this awful disease.

My poor mum has Alzheimer’s. She is 80 and lives at home with my dad who is 82. I live around the corner with my family and my dsis also lives in the same village, with her partner.

Mum was first diagnosed around 7 years ago and as with the disease, it is progressing.

We have a lovely carer who comes in every morning to help wash and dress mum as she was getting muddled and dad was struggling. Mum also goes to a day centre one afternoon a week.

My dad is not a natural carer and really struggles. He’s old school and hard to get through to sometimes and very tight with their money. They are very comfortable financially but he just will not spend money to help themselves and sees everything as a ‘rip off’ and too expensive.
He moans about the cost of the afternoon at the day centre (£50) and will not entertain the thought of mum going another day as it’s too expensive even though she loves it there and it does her good but because she has a 5 min memory and to her every time she goes it’s the first time and she gets a bit confused he will say she doesn’t like it but I usually take her and collect her and I see how happy she is there and how lovely all the staff are with her. When he collects her he just sees the people who are more advanced in the disease and says it’s freaks him out, sees a glimpse into his future and the says he doesn’t think it’s doing her good.

He won’t get into a routine with the housework. For instance I will say on a Monday ‘What is the washing situation like? Have you done any?’ and he’ll shrug and say ‘I dunno, not checked!’ And when I check, the washing basket is brim full.
A year ago I was doing everything for them but nearly had a breakdown (dad totally oblivious to this, thankfully) so have taken a back seat a little although still do a lot for them.
My sister has her own cleaning business and will clean for them once a week but dad won’t clean any other time. He does cook for mum, makes her drinks etc. He does his best to look after her and they do ok I suppose. And we know the career will do more if we need her, she’s is brilliant.

I know it’s so hard on him but he doesn’t fully appreciate how lucky he is that he has two DD who see him regularly (I pop in approx 5 days a week, dsis around 2-3 days). But he moans and whinges about everything.

Between us (my dsis and I) have so much to think of/remember to do. We have our own lives too. I have two teens (with their own issues I am helping with) and a dh. Dsis has a partner and 5 step-children who are all young adults with troubles which she and her partner are trying to deal with. Both dsis and I have some health issues and with all of this stress is making us both feel so unwell.

I hate dementia!

I hate that it’s taken away our lovely mum and in all sense and purpose has replaced her with a toddler in an elderly woman’s body. And it will just get worse and worse and worse. That’s the hardest part to deal with. To think we are struggling now and she is still able to toilet herself and fed herself, I can’t even contemplate just how heart wrenching it’s going to be when she starts to lose more faculties.

The stress is chipping away at our sanity day by day. I worry constantly about my parents, about what this disease is doing to my lovely mum and just how much my poor dad can take from it.
I actually dread going to see my parents these days. I have a constantly bad tummy, my sister has daily headaches/migraines and I live in a state of constant anxiety. I also live with the constant worry that I will succumb to this disease myself. I will be damned if I am going to put any of the stress of caring for me onto my kids.

And still so many people I know have zero idea of the hell which is dementia. They still all think it’s a case of a loved one just having a bit of forgetfulness.

If you have been through this or are on this God awful journey, how the hell do you get through this disease without if completely breaking you?

[bilbodog]

Didnt want to read and run - i hear you. My DF had alzheimers so i know about it. Have you tried contacting the alzheimers society to see if there is any more local help you can access? There may be volunteers who could help take the pressure off without costing any money?

at some stage i think your mum will need to go into care - how will your dad deal with this? Have you and your sister tried sitting down with your dad and having a serious discussion - let him know how hard you are finding it?

how is your mum at night? Is dad getting woken up a lot and is perhaps struggling more than you know? Maybe he is also trying not to worry you?

i hope you find a way to get through this - it is a very cruel disease.

[MissyB1]

Yes I hear you. We have had all of this with Mil -who eventually had to go into a home which specialises in dementia. Fil was extremely resistant to
A: getting her a diagnosis, he kept trying to pretend everything was normal and she was fine. He told blatant lies to the doctors.
B: accepting any help in the home. He point blank refused, no cleaner, no carers. Then moaned bitterly about how difficult it all was!

In the end things were toxic between them and frankly dangerous. He eventually admitted defeat,and we got her into a lovely home where she is actually very content and happy in herself. She had been very distressed at home with Fil.

You and your dsis have to be brutally honest with your dad. My Dh pussyfooted around his dad far too much - to the detriment of his mum and everyone else. You must insist that that this is a family problem and everyone’s must be taken into consideration. And an extra day or two at daycare is significantly cheaper than a home!

[iloveeverykindofcat]

I hear you OP. The women in my family have the genetic inheritance of dementia combined with a very long life, well into their 90s usually. It's my fucking nightmare.

[theresnolimits]

I’m ahead of you by about 8 years -one parent who covered up and wouldn’t face it and the other who needed proper help which they didn’t get.

My only advice is that it can be a long haul and you need to pace yourself. You’re enabling DF by constantly helping - draw some boundaries. Things sadly don’t improve - today is likely to be the best she will ever be. How will things look in two years?

Look at the financials too. When my non dementia parent died peacefully at home he left a complete financial mess. Five years later, care home fees have cost us some £300,000and no end in sight. It could have been better planned if we hadn’t been in such a rush.

I’ve learned to mentally compartmentalise. I do what I can but have DH, children and grandchildren who are my priority. Dear demented parent has had a long life and can’t be my priority. They never looked after their own parents or ILs. Give yourself permission to set priorities and make peace with it.

[Bigpromotion]

@bilbodog

Didnt want to read and run - i hear you. My DF had alzheimers so i know about it. Have you tried contacting the alzheimers society to see if there is any more local help you can access? There may be volunteers who could help take the pressure off without costing any money?

at some stage i think your mum will need to go into care - how will your dad deal with this? Have you and your sister tried sitting down with your dad and having a serious discussion - let him know how hard you are finding it?

how is your mum at night? Is dad getting woken up a lot and is perhaps struggling more than you know? Maybe he is also trying not to worry you?

i hope you find a way to get through this - it is a very cruel disease.

Thank you. I’m sorry you are also going through this too.

Alzheimer’s Society and all the other support groups were great before Covid times but they haven’t been that helpful since. Sadly most thing shut down and never reopened.

We have exhausted all the options in our area. The day centre is a life line and tbh mum should be going more than one afternoon per week but dad will not pay for it. Mum’s AA covers the carer and the day centre but dad will not pay anymore even though they can afford it (he is extremely tight fisted and a difficult character at the best of times).

Mum does occasionally wake in the night as she hallucinates at times but atm it isn’t too bad. Obviously the time will come when she will need to go into a home but in all honesty I’m dreading it because dad will hate it and therefore only visit a few times a week, my dsis works full time so it will be down to me to visit the most and I honestly don’t know how I can handle that. I know it will be for the best but I hate the thought of her sitting there alone in an unfamiliar place. She has lived in her house for over 50 years.

[Bigpromotion]

MissyB1 dad is a very difficult person to actually get through to. He constantly tells everyone how it’s ruining his life and he may as well have dementia too as it’s taken over his life.
When dsis and I say it’s affecting our lives too he glosses over that. I totally and utterly get how it’s taking him down too but he has no care that it’s affecting us as well. He really doesn’t.
I was made redundant back in the summer and the first thing he said was ‘That’s great, don’t look for a job, you can help me look after mum now’ I have since started up my own small business but I feel guilt every day for not giving up my time to help all day but I simply don’t want to, I am only 50, I want a life for myself too.
Life with dementia is much more difficult when you have a parent who is so stubborn and unwilling to accept suggestions isn’t it? He accuses me all the time of interfering when all I am doing is trying to make all our lives easier.

[bilbodog]

Dont beat yourself up - you can only do what you can. The only good thing about dementia (if there could be such a thing) is that if your mum goes into a home eventually she wont remember how many times you visit - you dont need to see her every day. Xx

[Firstruleofsoupover]

You may well already have done this but if not please have a look into claiming Attendance Allowance for your mother. It isn’t means tested.

If she is granted that you can then look into claiming Carers Allowance at lower rate for your father.

I’m very sorry for your troubles. Such a tough time for the family.

[Bigpromotion]

iloveeverykindofcat I feel your fear. My grandad (mum’s dad) had the start of it but luckily his heart took him out before it got bad and his dad apparently had it too. Before 6/7 years ago I never gave dementia a thought but now I will live in fear for the rest of my life.

[bilbodog]

I dont suppose you have power of attorney for your mum or dad do you? You really need financial and health ones as both your parents are elderly - would your dad take advice from a financial advisor or solicitor? (I expect you to say no way)!

[Bigpromotion]

theresnolimits I’ve actually taken a step back from a year ago when I was doing so much and it nearly broke me but I still feel so much guilt.
Yet I feel angry too because my dad (he’s an only child) didn’t help his parents much at all. Luckily they didn’t have dementia but my poor Nan suffered with cancer but dad was working and didn’t take much time out to help yet here I am feeling this overwhelming guilt about helping them!
The money side of things is all sorted as dad has a financial advisor and it’s all invested etc so hopefully that’s one thing not to stress over (I hope!)

[Bigpromotion]

@bilbodog

Dont beat yourself up - you can only do what you can. The only good thing about dementia (if there could be such a thing) is that if your mum goes into a home eventually she wont remember how many times you visit - you dont need to see her every day. Xx

I do often think of that, I suppose you eventually get used to that? (I hope)

[Bigpromotion]

bilbodog that’s the one thing I absolutely insisted on a few years ago. Full POA both financial and medical and dad has a financial advisor and all his money is invested well.

[Bigpromotion]

Firstruleofsoupover Mum does get AA, another thing I insisted on. Dad can not claim CA.

[Forestdweller11]

It's hard. Not easy. It's a cruel disease. You need to put on your own oxygen mask first. And take care of you.
It's perhaps difficult but you should think about cutting back on your visits. It maybe only a crisis will convince your dad to let go a bit more.

I know you write that your sister is a cleaner, but would he pay for a cleaner and then your sister can actually visit rather than work? If he would have the carer in more often would that help?

[Theeyeballsinthesky]

This sounds really tough OP - are social services involved at all?

[angeltattoo]

But it's her money too, he shouldn't refuse to use it for something that benefits her. He can do what he likes with his 'half'.

Does your mum have a separate account that you can access using the POA to pay for extra days at the centre? Would her AA and pension cover it?

[heldinadream]

@Bigpromotion is there any chance of you getting some counselling or therapy to help you process the guilt - you have no rational reason to be guilty, you are obviously doing everything that you can and you care, it's not healthy to be so burdened with guilt and expecting more of yourself.

I'm a retired therapist and had a few long term clients who were caring for elderly parents and it was very helpful that they had somewhere to explore these kind of feelings and to offload. You sound very on the edge of making yourself ill - and I see that you already have health and other issues, as does your sis.

You can't solve all the problems and you can't change your dad, but you can give yourself more space from all of this without feeling bad about it. Seriously you being so stressed and on the edge serves no-one.
Please take care of yourself. Wishing you well.

[LickleLamb]

Don’t go in so often. Dad is being unpleasant and selfish,Mums prob not aware if you’ve been or not.
Try twice a week. A dirty house,bedding etc only matters to you it seems. I’m not being critical but cut yourself some slack ,make time for a hobby, exercise class for hourself.
Mum and Dad are getting older and iller and probably hate that, or at least Dad does.But it comes to us all,you dont have a magic wand to make life fun and easy for them or to turn the clock back.

[LickleLamb]

I say hobby and exercise class to encourage you to carve yourself some time to think about something other than the DPs.

[MissyB1]

@angeltattoo

But it's her money too, he shouldn't refuse to use it for something that benefits her. He can do what he likes with his 'half'.

Does your mum have a separate account that you can access using the POA to pay for extra days at the centre? Would her AA and pension cover it?

Actually some really important points here 👆

[CatOnTheCludgy]

I think your dad needs to step up. Can it be explained that you can't keep this up? And he has to do more/ pay for more help in the house

[Bigpromotion]

Forestdweller11 my dad would never in a million years pay for a cleaner, he is obviously to mess and dirt. Tbh, my sister loves cleaning and is more than happy to do it so I leave that side of things to her. I deal with all of mums medical stuff (she has other health issues), financial stuff and other practicalities.
I have cut back on the visits a bit, I used to go every single day but find it difficult to cut back further because when I do go I am filled with guilt because I will get ‘Oh there you are, we’ve been wondering where on earth you’ve been’ - this is literally after two days!

Theeyeballsinthesky We’ve had SS in a couple of times but because they have us and a carer and mum is looked after and because they have money, they are not interested.

angeltattoo this is what annoys me the most. 89% of their money is actually my mum’s inheritance from her parents. Dad took it upon himself, years ago, to invest ‘their’ money and didn’t really involve mum at all. Mum has a separate account in which her AA and pension goes into which covers her day centre and carer. The other accounts are all joint, any extra day centre days would need to come out of their joint account.

Thank you heldinadream, I am on a waiting list for counselling, I’m on a waiting list and hopefully will see someone next year, sometime.

[Uniqueusername2]

I really sympathize as we just came to the end of a similar journey with my mum who was bed bound for the last few years. We found an agency called Promedica which provides a live in carer and was more reasonable than a home. You don’t sound like you are there yet but worth bearing in mind for the future.
take care of yourself x

[Parky04]

My FIL had dementia. He lunged at me with a knife once because he thought I was going to rob the house. It was a very stressful 5 years, and it only got better when he went into a care home.