Struggling with the emotional aspects of watching a parent being consumed by dementia

[Backtothe80splease]

I can’t stand it anymore.

My lovely mum was diagnosed 8 years ago and she and dad have been bumping along with help from my sister and I and a lovely carer in the mornings.

I see my parents a lot throughout the week but it’s becoming such a struggle trying to be strong for them. I absolutely hate seeing my lovely mum struggling with her words and sitting there not knowing what to do with herself or even where she actually is sometimes.

Mum was always a follower of fashion and everyone used to say how lovely she looked and how well dressed she always was. Now she has no care for clothes, make up or personal hygiene. If she had her way she would sit in a stinking nightdress for weeks on end, with an unwashed body, oral hygiene out of the window and would live off biscuits.

Obviously we don’t allow that but it is so hard looking over at someone every day. Someone who looks and sounds like the lovely woman who has been my mother for the last 51 years yet it’s not really, it’s like she has been taken over by the spirit of a toddler child. I often say I now have 3 children, my own dc and now an adult child. It’s heart wrenching.

And if it wasn’t bad enough seeing your lo being eaten away by Alzheimer’s and bent over from osteoporosis then being blind sided by her breast cancer diagnosis has just about finished us all off.

And seeing my poor 82 year old dad having to now look after his toddler-like wife is heartbreaking too. Mum tells me every day she wants to die and my dad tells me he may as well have dementia because he’s living with it 24/7. I always thought my dad was strong but dementia finishes off even the strongest of us.

This is just a rant really as we are all in the same boat I suppose, I just wanted somewhere to spew out my frustrations and depression over the unfairness of this disease.

I genuinely feel for anyone going through this journey and I’m terrified of it, scared it’ll hunt me down one day too.

I know and understand how you feel. Îm sorry that you , me, our parents and anyone touched by this is going through it. I think people can only really understand if they’ve walked this path Sending you strength and best wishes.

💐

That’s so sad. I’m sorry… I saw my gran through similar. Heart-wrenching. Does having a sister to share the emotional burden help at all?

Thank you Frites I am sorry you are on this journey too, people really have no idea of the hell that is dementia until they’ve experienced it first hand do they? Most of my friends still believe mum has a bit of memory loss and that’s all. If only!

Slattern77 thank you, sorry your gran succumbed to this awful disease. It does help to have a sibling to help although my sister will often stand back and let me me do more if she can.

I'm really sorry, OP.

My grandmother had 10 years of it.

Awful. I am hoping that I can have a brain scan for dementia if there is no cure by then time I get old and then book dignitas if there are any signs that my body will outlive my brain.

It is heartbreaking isn't it? My DM has had a fast decline, no longer recognising her grandchildren or understanding why she has to live in a care home. DM always took great pride in her appearance and, before I walk her to lunch, she combs her hair and puts lipstick on. This is despite her mismatched shoes and blouse stained by dribbled tea. I can't help letting a tear escape. Sending a pat on the back in sisterly solidarity for all of us going through this.

I feel the same lemonstolemonade, I really do hope the laws change soon. It’s no way to live out the rest of your life.

Thank you Crunched, so sorry you poor dm has this evil disease. I too often turn my head and shed a tear hear and there, it’s hard to constantly put on the brave face when you are weeping inside.

Support from down here in Australia too. My Dad was diagnosed 2 years ago and the change in him is astounding. He’s in a home, but the decision to move him there, the caring and the mental labour have all had a toll on me. 💖

I've been there and it's hellish. I've always said I will end things if I get a diagnosis early enough. There's no way I want my children to experience what I did.

I don't usually read or comment on these threads because it's too hard. My DM died 4 years ago, but the years leading to her death were hell and her passing was a blessed release for both of us. Seeing the decline was emotionally painful and I found all the terrible events throughout her Alzheimer's, and then her death during covid when I couldn't be there to hold her hand, very traumatic.

At the time I got through it mechanically, I don't think I even cried when she died. But I can't look back on it now without breaking down and getting strangely shaky, so I don't!

I'm very sorry OP, it's the hardest thing I've ever had to do. Stay strong and try to remember who she was.

You have my utmost sympathy. My DM had dementia, my dad cared for her as long as he was able to and the last 2 years of her life she was in a care home.

Enjoy the moments when she is ‘in the room’, be there entirely with her and stay for as long as you can, bottle them. Operate at her level, do not try and rationalise, my mum and dad went on lots of cruises whilst they were both still well and when she went into the home, she thought she was on her cruise ship so we just joined her in her head on her cruise.

Like a PP, her death was a relief. My incredibly bright, funny dad has it now and the godawful journey which only gets worse is starting again. Except my dad managed it all last time and now we have to.

It's horrible isn't it? I'm so sorry OP. Rant away, your rant is my rant. It's the same for me. Although we are now slightly further along as my dad could no longer cope with caring for mum and social workers came and she's now been placed in a care home. It's so hard as like your mum, mine was so fashionable and glamorous and took such pride in her appearance. Now she's in these tatty joggers, slippers and mismatched t shirts. I try and buy her new things but every time I visit the care home she is in the old stuff again. They say she prefers it and despite me buying nice comfy stuff for her I'll see them being worn by others and the care home just don't seem to bother. 'oh things always go missing' is their response. I've sewn her name on the clothes it makes no difference.

She's gained weight as it's just biscuits and cakes now she will eat, her hair is hardly ever washed as she attacks the workers if her hair gets wet she hates it. So it's mostly greasy now.

She can barely speak or say words now that even remotely make sense. And my mum was a talker, so sociable and loved her friends. It's shit. I'm sorry OP for you and for me and for everyone affected by this shitty disease x

I hear you @Backtothe80splease and it's shit. My dad was diagnosed with dementia in March 2020 - well, I say diagnosed but it was all done over the phone because of Covid and once the person on the phone told them it was probably dementia and to pick up a prescription they were just left to get on with it. Mum was mid-70s at the time, she had to take on the role of caring for dad. Early on it wasn't too bad, yes there was memory loss and a bit of confusion, but he was still functioning. After a couple of years though things were a lot worse - refusing to get out of bed and saying he was dying, accusations that mum was trying to poison him, shouting out randomly and up and down all night, paranoid delusions and all the rest of it.

Scotland was in Covid restrictions far longer than any other part of the UK and they were just totally abandoned by the NHS. Sibling and I tried our very best to get them support but social services were just not interested as mum was "coping". It is so hard to see a parent going from this strong person who was always there to support you, to this shell of a person who is frightened, paranoid and just not themselves any more.

Things came to a head for us when Dad fell outside and was admitted to hospital for an operation. Being in hospital was something he just couldn't cope with as it was so unfamiliar. He repeatedly managed to get out of bed (with broken limbs) and hurt himself further, pulled out the catheter on an almost daily basis, wouldn't eat. He died about 3 weeks after first being admitted.

Looking back, I really wish we'd got social services involved sooner. I live quite a long distance away from my mum, sibling even further. Even if there hadn't been covid restrictions, we couldn't have popped in every day. In lots of parts of the country there are active Alzheimers or Dementia charities running coffee mornings and all sorts of other activities and these are as much for the carer as they are for the patient. It is very hard though as the adult child.

There is lots of support here on the elderly parents board and you will find lots of people who do absolutely get it, and know all about the challenges and emotions involved.

My dad was diagnosed with dementia after mini strokes a while ago, and it's now quite far along. He can still talk and remembers who we all are, but he physically can't do anything for himself anymore. Terrible balance and sometimes too weak to get out of his chair.

My mum takes care of him, but she is also 80 and struggles with memory loss. They have carers twice a day, but it's only for 15 minutes the rest of the time they are all alone.

I am an old child and there is no family within 200 miles of where they live, and I live abroad so I am really no practical help to them most of the time. Its just heartbreaking, I just don't know what to do or how this is going to end up.

I am an ONLY child :0) (not old, well old-ish!)