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?

Thank you Uniqueusername2 I will keep hold of those details. This is something I’ve suggested to dad a few times, They are lucky in the fact there house is large enough to turn a part of it into a self contained annexe which would be perfect for a live in carer. Of course, that suggestion went down like a lead balloon but I will still keep it in mind. Sorry you have been through this journey too x

Parky04 I don’t think people realise just how much dementia can change people. My dh former work colleague who was a lovely gentle giant actually broke his wives jaw when dementia set its teeth into him.
My iwn, usually lovely passive mum has the most awful toddler-like strops these days. It’s just a terrible disease.

It sounds like your dad is contributing to your guilt when his situation is the result of his own choices.

Your mother's inheritance should be paying for her care now, which would make life easier for everyone and enjoyable for your mum.

And what does he think will happen to that money if he doesn't spend it on her care? He won't have the opportunity to spend it while caring for your mum. If he tries to save it for you and your sister to inherit, most of it will be taken in tax anyway.

If he tries to lay on the pressure, keep re-iterating that he's the one choosing to not access support.

And do reach out to Alzheimers Society or Dementia UK for yourself. You can always talk things through or join a peer support group for people in your position. There's no need to carry it all on your own shoulders.

I would say your mother is being financially abused by not having access to HER inheritance to better her standard of living.
I actually remember you op from while ago because you had to fight to get him to pay for that one session.
I would be quite angry with my father if he was hoarding her money and then moaning about daily life.

I don’t think people realise just how much dementia can change people. My dh former work colleague who was a lovely gentle giant actually broke his wives jaw when dementia set its teeth into him.
My iwn, usually lovely passive mum has the most awful toddler-like strops these days. It’s just a terrible disease.

@Bigpromotion

Dementia is a horrible fucking bastard!! Our mum suffered for 12 years before Covid took her, the only 'good thing' that Covid ever did. It was truly a blessed release. Medical science devotes millions and millions into research to extend the human lifespan, but not a fraction of that into researching ways to extend the health of the human brain.

It's been referred to as 'the long goodbye' and it truly is, as you watch your loved one slowly slip farther and farther away, until they no longer know who you are, or indeed don't know who they are themselves. We were lucky that when Mum got so bad that even having my DBro living with her wasn't enough to keep her safe from herself we found a lovely care home about 7 minutes away. She was there for 7 years and they took such good care of her (and all their residents).

We were very lucky that Mum never got violent, but she accused my DB and I of stealing from her, 'drugging' her, and accused my DB of 'keeping women captive' in his closet. She actually called 911 on him one night because he was 'raping a woman in his bedroom'. She insisted that her cat told her this. Yes, her cat. This was the point at which she started wandering and managed to get outside the house so we decided she needed more care than we, especially DB, could provide. It's a hard, hard decision, but it's the right one 'when the time comes'.

You're on the long, lonely road and there's no way of knowing when you'll be able to finish the drive. Take care of yourself, rely on your family for support, seek MH help if you need it, and pray if you're a praying person. I'm so sorry you have to go through this.

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.

I hear what you are saying @Bigpromotion but I think you need to get them back in again to do a full assessment. You and your sister are run ragged with this and as you say, it's only going to go one way. You cannot keep picking up the slack for what your dad can't do, or refuses to pay for. You need for your mum to be on social services' radar.

My mum was the same when dad had dementia, she was absolutely sure she was managing everything for herself and she really wasn't. My sibling and I lived quite a way away and would regularly get calls to help in some way, "babysit" dad so she could take the car to the garage or get her hair cut because she could not leave him for 5 minutes. Out biggest fear was what would happen to Dad if she had fallen and broken her leg and needed to be in hospital. He was unsafe on his own, we could not drop everything to go and live with them. Social services need to be aware of their situation so that in an emergency, they can step in.

If your mum is under the care of a memory clinic or community mental health team, make friends with them. They can tell your dad what your mum NEEDS, both in terms of care and social interaction. They might be able to offer some funded support, transport or sessions at a different day centre.

I also very much identify with the parents who have plenty of money sloshing about and refuse to spend any of it. It's so frustrating.

Oh forgot to add - you say you nearly had a breakdown and your dad was unaware. Maybe he needs to know. Maybe you and sister sit him down and just lay it out how impossible the situation is for both of you, the impact it's having on his sons-in-law and grandchildren, and how you cannot go on. United front between the two of you - bit of a reality check.

I don't have much to add, but I understand what you are going through. My mum had Alzheimer's and my dad was her carer for 10 years. It's a horrible disease, it took my mum and all she was little by little. I too dread the thought of it taking me. The Alzheimers Society were wonderful with my mum and dad, and had a 'befrienders' scheme with local volunteers who provided company for both of them, and would come in to sit with mum while dad got a break to go out. I agree with pp - cut yourself a lot of slack on this. Try to take a step back if it is affecting you badly. It takes a heavy toll on family as well as the sufferer.

Sorry I don't have time just now but just wanted to ask if you/Dad have claimed the 25% discount off Council Tax for your Mum? If not, have a search for "Council Tax Severe Mental Impairment " on the councils website. It can be backdated to either the date of diagnosis or date AA started, whichever is later.

Agree with this

Your Dad is obstructing your Mum's care needs. It may be for reasons that make sense to him, but he is making her quality of life poorer by holding the purse strings tightly. I saw this all the time when I worked in the care sector.

It's a form of bullying/abuse and I know how awful those words sound. But it's not his place to decide what help she can have when she needs more than she's getting. I think your sister and you need to sit him down, explain that this has to change because you're both buckling under the strain and you're worried about him too. And if he won't budge, then you need to involve SS. Please don't be afraid of contacting them - they were amazing when my Dad was terminally ill. I had a named contact who involved other agencies and it really helped.

Thanks for the advice everyone. It’s so frustrating.

Dad is so worried about spending any of their money incase, when the time comes to place mum in a home they won’t have enough and he thinks she’ll be placed in a run down council run hime, I (and the lady from SS) have tried explaining to him that this will not be the case and mum will be looked after whatever the situation. Although tbh, I do think he is using this as an excuse. They’ve had the inheritance money since 2001 way way before mums diagnosis and the money changed him back then!

He is constantly asking me if I can check to see if he can get money off from this or that because he’s seen something on tv. He is dead set on saving and keeping all their money rather than spending. I have told him time and time again that it’s rainy day money and now the leak has sprung and he needs to use it but he won’t, it’s driving me insane.

TomatoSandwiches Although since my first thread about this dad has agreed to the day centre and the carer it really hasn’t gotten much better. And even the majority of replies said he was basically an arse I just can’t shift this guilt ridden feeling that I need to look after them.

AcrossthePond55 I am so sorry you went through this too, it really is a very long goodbye. I’ve read you grieve twice too, once whilst they are still alive and for the person you lose physically/emotionally etc and again when they pass. I love my mum dearly, she has been my constant best friend and the one person who always had my back but I wish she would slip away, she has a pace-maker because of a heart co diction as a cruel as it sounds, I really wish she hadn’t had it fitted 😢

Stroopwaffels thank you. I will definitely contact them again and see what they can offer. My dad does know, deep down, how much this is affecting the rest of us but he’s good at living in denial, we will never get him to admit to it, he’s the type that if he was downing he’d grab you to save himself. I love him and that’s horrible to admit but it’s the truth.

catscatscurrantscurrants I will contact them and see if they have the scheme in our area. It truly is a wicked disease.

SkyFullofStars1975 I’ll be honest, SS haven’t been too helpful but I will contact them again.

I am so sorry you went through this too, it really is a very long goodbye. I’ve read you grieve twice too, once whilst they are still alive and for the person you lose physically/emotionally etc and again when they pass. I love my mum dearly, she has been my constant best friend and the one person who always had my back but I wish she would slip away, she has a pace-maker because of a heart co diction as a cruel as it sounds, I really wish she hadn’t had it fitted 😢

@Bigpromotion

I grieved long, but not really twice. My grieving had already happened over many years, I think the grieving part of my brain had gone numb. By the last year of her life Mum was basically just a hollow shell, her 'self' was completely gone from us. I will not be ashamed of the fact that I prayed daily for God to take her. When she died there was just a profound sense of relief that she was no longer suffering and as a person of Faith, a feeling of joy that she was now reunited with Dad and her loved ones. I'm not trying to proselytize, you will find your peace in your own way when that time comes.

Listen, don't feel bad that you wish her suffering would end. No one wants to see their loved ones suffer.

As far as the pacemaker goes, speak to her doctor about how her pacemaker 'works' and whether it will keep her alive indefinitely. Pacemakers don't always keep a heart going when the rest of the body is saying it's time to 'go'. There is a lot of information out there online, but as we all know 'Dr Google' isn't always the most reliable source.

My DF has vascular dementia, 2023 has been one of the hardest years of my life. DF was physically and verbally abusive to us and we had to gave him sectioned. Now in a care home he is at least being cared for, kept clean and fed. We were struggling with his care, he is doubly incontinent and wouldn't wear pads so we were having to clean up mess constantly, wouldn't wash, wouldn't eat, wouldn't take medicine and kept wanting to be taken out in our cars then getting furious when we said no but it was physically exhausting and who wants to be scrubbing faeces and urine out of their car seats?

Dealing with SS, Dr's, carers was hard work, I live 130 miles from parents and I have a chronic illness, it sucked the life out of me. DM was just dumping it all on me and was oblivious to how stressed and exhausted I was. There were days when I was on the phone for two or three hours arranging things. I have a DB but he is lazy and conveniently "useless at this stuff ".

DM then decided she wanted to renovate the house and clean up the mess left by DF, once again I was asked for help. So much needs doing as it became neglected over the last few years that its a huge job including clearing accumulated rubbish.

In amongst all that I have had to cope mentally (alone) with watching DF deteriorate and be a rock for DM. I feel traumatised by being the person to have DF sectioned everyone in the family buggered off and left me alone to manage it the night he was taken because it "upset" them.

I had to ask the MH unit DF was in to not allow him to call me as he was phoning and abusing me several times a week (sometimes several times a day). Now only a few months later he can't speak and I'd like to hear his voicevsfain even if it's nothing nice.

I have promised myself that 2024 I will be taking care of myself and living my life again. I have made a lot plans already to enjoy things again. I will of course assist DM still but at my convenience

This is currently my life with DM... she no longer speaks. Fiddles with everything. Can't walk and is bed bound. But this has happened in only a space of 4 months. The grandchildren are too scared to see her. It's heartbreaking. Nothing I read is telling me it gets easier xx

I’m sorry you are going through this on your own, that must be so very hard.

My dsis wasn’t doing much at the beginning and I had to step back for a while so she could experience some of the burden (mean but I had to do it. She gets it now).

You are so right to set time aside for yourself, I’m going to try and do the same as this has taken such a toll on my mental and physical health, I don’t want this to completely ruin my life.

That’s the hardest thing isn’t it? Just knowing that it will get worse but not knowing when or exactly how and knowing there are no medications or medical interventions which will ease the situation .

I feel as though I now live my life on a complete knife edge these days, I wake up and wonder what will occur today, I can not rest or relax worrying about it all. I really feel for you.

I know this would not go down well but have you tried approaching it from the point of view of your mum's inheritance? Your mum has a right to be able to access and use that money, and if you think your mum is the sort of person who would have wanted to use that money to make herself more comfortable then your dad needs to hear that.

100% this.
If it were the other way around mum would not have hoarded all their money she would, as you say, have used it to make their lives more comfortable and as enjoyable as possible. Shame my dad just doesn’t see it like that. He seems dead set on keeping it all invested because mum will one day go in a home and he seems so concerned there won’t be enough to pay for the care.

We just can not get through to him.

I feel your pain, thankfully (in some ways) it's over for me, I lost my mum in 2020 but it was a long and very hard road up to the point she was admitted to hospital in November 2018 after yet another fall and from there into a home as she'd become a danger to herself and my dad couldn't cope on his own with her when we weren't there. We were a short drive away and it had got to the point we were there several times a day and getting other calls from dad for help with her. It was obvious things couldn't carry on as they were, we were all worried sick, knew it was dementia but no official diagnosis until that final hospital admission.
My dad had spent many years in denial about the gradual deterioration (and not sharing how difficult things were getting) until he and she couldn't pretend it wasn't happening any more.

I hope they've sorted out powers of attorney and all I can suggest is you keep talking to your dad and finding out what plans he's got about care going forward. £50 an afternoon for respite is a bargain compared to care/nursing home fees.

Sometimes you need to take a step back and let them work it out for themselves. I lost my dad in 2021, I would say I'm just about recovered from the stress of it all now!

@Bigpromotion stepping back will not work with my DB unfortunately as he will just leave DM on her own to cope. He's not reliable and makes offers to do things with her and for her then comes down with a mystery illness or is too tired etc he lives 5 miles from DM I live 130 miles away and do the majority of the work with Dd and SIL helping as well.

It's so hard to get the time to take care of yourself but I think when your in the eye of the storm you don't realise how much your doing or how much your struggling, now things have calmed down a little I can reflect a bit. I am trying to strike a balance now between looking out for DM, visiting DF and looking after myself.

I did put my foot down with regard to contact t from the home as DM was leaving it all to me, when I said no you need to do this, she tried ti get my DD to be the contact! I have forced the issue and DM is now dealing with it, i don't know why she was being so difficult but I pointed out we all have jobs and can't spend our working days dealing with issues that arise

What you’re describing here is actually a form of financial abuse. The withholding of funds which could be used for your mum’s wellbeing is exactly that.
Your dad and mum married in sickness and in health. Maybe it’s time for a brutally honest chat with him. The money is as much hers as it is his.
Also he needs to understand if she was at the day centre more often his life would be easier too.