Caring full time for someone with dementia? What’s the hardest

[TheOpalFox]

I think cleaning up after accidents is the worse :(
My dad lives with me and he’s a gem! But cleaning up after accidents is the worst :( I know he can’t help it but it’s hard work :(
What’s the hardest thing about caring full time about someone with dementia?

Losing the person. Becoming ‘that nice lady next door’ rather than daughter in law and best friend.

OP Invest in a small carpet cleaner, it will save your sanity (and back and hands).

The strain on my mental health. The constant repeating of everything and having to explain everything in great detail. Then, being told by other people how wonderful I am and they don't know how I cope and me thinking I had no choice.

Yesss!!!

I bought a Shark mini carpet cleaner. It was advertised for pet clean ups, but did human clean up just as well.

There came a point when it was just one of those things, but that was after years.

By far the worst thing was my lovely mum, such a lovely lady, losing her quality of life, physically and mentally.

Next was the mental strain of the whole thing. That nearly did for me.

The accidents were probably third on my list. The indignity of it for Mum, and the cleaning up for me.

Learning not to disagree with even the most ludicrous statements/actions.

My grandma thought her son (my uncle) was her husband and would get really distressed when we corrected her. It was disturbing for all of us but the distress was worse. Life got easier when we learned not to disagree and simply distract her.

No diagnosis of dementia but most likely was there. I don’t know where to start but lack of trust and the arguments, the lack of insight into how bad things were, the aggression both verbal and physical. In the last 6 months of her life, she’d forgotten that her older brother had died 30 years ago (she was with him) and every time I visited she asked what happened to him, begged me to tell the truth and cried when I told her. The last visit I made she was both abusive and asking to see her brother one last time before she died. I couldn’t do as she asked hence the abuse. I’m sure she died thinking I didn’t care, I wasn’t there. I’m left exhausted and traumatised. It turned me into someone I don’t recognise and I had to distance myself a little once she went into the care home that she hated and I’m sure blamed me for. People have told me I was a really good daughter, she didn’t think that though I believe I did my best. I have 2 teens and neither have ever caused me as much anxiety as those years with my mum. I have heard it described as a privilege to care for our parents, I didn’t feel that, just ground down, though faced it with as much good grace as I could muster which wasn’t always a lot. And the real hero is my non complaining husband. I wish I found this site sooner. Sorry I’ve gone on, it’s still so raw. Solidarity to all.

Not having a second to myself. Being followed, questioned & expected to entertain/ distract my mum constantly. I don't have children so I wasn't used to this sort of pressure. Her character changed, & her dreams / nightmares became her reality but the worst of it was the utterly unrelenting nature of caring for her. I loved her so much; she had been a wonderful, kind, funny & gentle soul, the mum all my school friends had loved. But in the end, God forgive me, I was praying for a quick death, for her. I'm so ashamed of this. I've never admitted this before.

@Gotback nothing to be ashamed of. None of us want to see a loved one in distress. Be kind to yourself, it’s a very cruel situation.

The lack of sleep - Dad had a button he could press if he needed me (I lived in 24/7 plus we had 4 x carers a day) - at any time of day or night - it would set off a digital tune (I use the word loosely) in my room. Dad never knew what the time was, day or night, so I'd often be woken to be asked 'what time is it?', or 'what's the name of my carer?' or 'what's that film with the big cannon in it?'. I actually miss those times now (Dad died in 2019), and am glad to have been able to be there for him - but at the time it was a bit of a struggle!

It turned me into someone I don't recognise too. I ran out of patience, I was so exhausted. If I could only do it all again I'd be so much better, now I've had a rest from it all but I can't because they are no longer here.

The constant worry

For me (with FiL) it was having to tiptoe around him on eggshells, since the slightest show of irritation, or telling him he couldn’t do something that was impossible anyway (like wanting to hang something on a washing line we didn't have!) could result in a truly violent rage - so bad I’d have to leave the house and take the terrified dog with me.

The other was the endless repetition of the same question - I once counted 35 times in one hour. I had to somehow make a separate compartment in my head, where I could go on answering without showing the slightest irritation.

Re the rages, I know dh didn’t really believe me until he saw one for himself. TBH I wouldn’t have believed it either - it was so unlike the FiL I’d known before.

@katgabSincere sympathies. What an utterly miserable experience. Hope things are on the up now.

The mental exhaustion. The wandering around the house and not resonding when I ask where are you going? The constant need to pass urine even with no infection. The creeping out the back door to wee in the garden. Taking a wee in saucepans, ornaments etc. Appearing with both pants and trousers around her knees so needing constant reminders to pull up pants. Walking upstairs constantly with pants round her knees.
Ransacking her room every day. Clothes everywhere. Every day.
This is my mum. She was beautiful and elegant. She has travelled the world with my dad on an oil tanker. She grew up in Ireland and knew so much about cattle.
The hardest thing by far is watching her lose her dignity. Where has my mum gone? I want to see her in her little red neck scarf and her matching clothes. Her hands are still the same and she wears her wedding ring. She loves me but gets angry with me.
I cry every single day. I have become impatient and I am difficult to live with. I miss my dad who died 23 years ago all over again.
Dementia is so cruel. Im in this acute state of grief and I feel blindsided.

I don’t care for my DM full time as she’s in a nursing home now. Before that I visited and cared for her every other day for four long years.
For me it was when she stopped recognising me.

@Gotback I felt just the same, it's awful but you get to the end of your tether

The never ending fighting of tiny fires. As well as the mental deterioration there’s the physical - decline in swallowing capacity, continence. I always seemed to be on the back foot, not helped by mum’s denial that this was happening to dad. Or by sister’s support of mum’s view that we didn’t need help. We absolutely did.
we were lucky in that dad was generally sweet with his dementia. But he was a big man and he became akin to a large baby. Exhausting.

gosh a miss him and the man he was

My dad is full time carer for my mum who hasn’t yet been diagnosed but has been ‘away’ somewhere else for a year. If you asked him he’d say

• being told off by her as he can’t see her delusions / hallucinations. She swings between being angry with him and being worried and trying to get him help for his ‘dementia’
• yes, the accidents
• now, her waking up in the night, getting dressed, and most recently, going downstairs and hiding the back door key…

from the outside, I think the hardest thing must be the loss of their relationship. She went swiftly downhill after a serious hospitalisation a year ago and he went from being her husband to her carer just like that. They don’t have an equal partnership anymore and while he has her company, it’s obviously not the same. It must be very lonely.

Dad, my dsis and I care for mum for the last 5 years quite happily (although at times stressfully), it was frustrating at times but mum has alwys been easy going so it was ok, we thought we were doing well. I have always been told it becomes so so much harder when they become incontinent and boy they are not wrong.

Mum had a fall in June and fractured her neck. She was in hospital for a month. They allowed her to soil the bed every day, (mum went into hospital fully continent). I pleaded with them to get her on the commode as much as they could but they just didn't have the staffing levels for such a thing.

Mum has been home a month and as a result of her hospital stay she is now double incontinent, despite now having carers in 3 times a day it's becoming a complete nightmare. Trying to clean up someone who has soiled themselves, who refuses to get out of her chair and then cries out when you try to change her nappy is a nightmare. I hate seeing my lovely mum in this state. She would have hated to have ended up this way.

I truly had this wicked disease, it has destroyed our family.

That's truly sad @Thebluespoon , someone with dementia always seems to come out worse than they went in. It's not just the quality of care, it's the lack of anything familiar, my DM ended up in hospital with UTIs about five times, each time for about four weeks and she went downhill after every one.