Caring for single parent with Dementia

[FiveFoxes]

I am sure there are others in my situation, but I don't seem to come across them online or irl. I am feeling quite isolated by my situation and that no one understands.

My Dad died years ago and my Mum has lived alone ever since. She was never any good at doing things for herself and has been very needy and reliant on me since he died. She then developed Alzheimer's and was diagnosed a couple of years ago.

When it reached the stage that it was too much for me to do on my own, I got carers to do some of the caring, but I am still looking after her the majority of the time around working, my own family and home.

She still lives alone but is, obviously, sadly, getting worse all the time. She would hate a care home and doesn't even like the groups I have tried to take her too as she doesn't really like other people. She has never really had or wanted any friends and has never gone out to hobbies or out with friends.

I am finding it so hard with the burden (and despite what I tell her, it is a burden) all falling to me.

I feel so lonely as no one else seems to be in my situation. I am also relatively young as Mum was quite old when she had me, so my friend's parents are still quite young. When I have gone to groups, the carers for those with Alzheimer's are usually the pesons spouse or if it is a child, it's because they are giving the other parent a break.

I feel like I am the only 40-something year old with a single parent with Alzheimer's. Anyone else out there? Misery loves company...

You aren't the only one. I'm older than you but, nonetheless, I found other carers were much older than me. And I don't want to spend my "free" time talking about fucking dementia!
It's really hard - between two close relatives, dementia has dominated the last decade of my life and still does. Don't be me.
She may not like the idea of a care home. My relative didn't want to move to one but is actually very settled. Sleeps better, is calmer and is safe. They used to refuse to go out or see other people but now they eat with everyone else and sometimes join in with activities. The care is excellent and the staff support me as well as relative.
The deciding factor for me was that keeping them at home became unsafe for both of us. It's unsustainable when you know they could set fire to the house!

Not quite in the same boat
But I am in my very early 50’s and my dh has Alz’s.

its very isolating and very lonely.
even In support groups, the majority of carers are much much older than me!

I have an online support group, where we are younger. But you are not alone in this! It’s shit

I am 39 with a young family (children aged 5 and 8). My dad died when I was a teenager. Mum has had Alzheimer's for 2 years; I've never known heartbreak quite like it.

I am however fiercely determined not to spend my children's precious childhood consumed by this so I look for joy in every situation I can and it's mostly been easy to find even when there is also sadness. I love my mum dearly and I want her to be as happy as possible but I've accepted I cannot split myself in two and be everything for her and my babies at the same time so I focus on giving what I can and that being enough. I also live in the present as much as possible. I'm under no illusion the future will be incredibly hard but I will face that when it comes, all we need to face today is today ♥️

Sending love and strength xx

I'm late 50s, single and am live in for my 90 something remaining parent. It is relentless. I always said they would only go into a home if things became dangerous or too medical. Having seen how transformative a respite stay in a good home was for them, I'm starting to have second thoughts.

It's a bit shit really though isnt it? I am looking into getting counselling as I feel a bit off balance recently. I've been doing this since lockdown,cfirst parent died ten years ago. Diagnosis in 2020 with a five year prognosis and here we are still.

I'm fortunate in that there's only me, i don't work and my parent has some savings.

Have only just seen your post @FiveFoxes

How are you doing?

Am in the same boat (with a complicated back story). Mid 40s, juggling everything and feeling like I am doing it all badly. M is now in a nursing home which I thought would be easier - but it isn't. She went downhill very suddenly and unexpectedly so despite the personal care being sorted, everything else is still an ongoing load.

You say she'd hate a care home, but if you can't continue as you are, find one for her and do not feel guilty.

I’m 40, only child of single parent, she developed dementia a year ago and went downhill quickly. I moved her into a home 2 months ago. Despite having carers visit, she wasn’t safe at home mostly alone. In the first week she hated it, it was awful. Now she’s so settled she tells me firmly she doesn’t want to leave. At home, she had terrible stomach aches and headaches and was constantly trying to get painkillers from anyone she could as she couldn’t remember the carers had already given her the max dose. The GP was baffled what was causing the pain. In the home, the stomach aches and head aches have vanished! She is much better looked after and no longer stressed. I can visit her and actually chat instead of spending my free time running about exhausted and resentful sorting endless crises

@MyNavyPlayer it gets a bit better when they settle into a care home, doesn't it? You can relinquish the role of carer and become their daughter again. I'm not saying life becomes joyful - they still have the disease - but it allows you to resume/develop your relationship with your LO in a very different way when you have a team who are meeting their day-to-day needs and keeping them safe.

Thanks for all your responses and sorry you are all going through this too. I would write more, but since starting this thread things have taken a turn for the worse. I have just posted in Elderly parents about it. Demands are exceeding my capacity at the moment 😢

Are you sure she didn t like the groups ? She may have said that but actually she did - were you there with her ? We had 2 different reponses from the people when my Dad went . He in his former life would have hated the care home ( and teh groups) and the first couple of visits he asked to come home but he then accepted that it was his place when he went further downhill it was without a doubt the safest and best place for him . You have to put yourself and family in the equation somehwere - its hard and you have to think ahead - SO sorry for you !

You’re definitely not alone, I’m 38 and the child of a single parent with dementia too, having lost my dad when I was a teenager.

I also really feel the weight of having to manage this at a (relatively) young age, from the hospital visits and organising carers to thinking ahead ten steps to make plans for future care, it’s all very different to the experiences of my friends and colleagues, which I find gets me down.

It can really eat into your life, and all I’ve found to help is making a really conscious effort to block out time for little pockets of joy for yourself, from a cinema trip to a yoga class and I put my phone on airplane mode for a few hours.

It’s rubbish, but you’re not alone in it x

Where did you find the online support group please @Alzssucks?

I’m glad I stumbled across this thread, it helps to know that others are in t

Whoops, posted too soon! Helps to hear others are in same situation, although I wouldn’t wish this on anyone.

I have also been struck by not finding any one face to face who is a similar age 40s-50s looking after parents. Everyone seems to be spouses who are much older. I would love to find others here who are going through similar looking after parents with dementia, whilst managing jobs and their own kids. X

We set it up ourselves.
as I met other likeminded women - who had husbands with a diagnosis, we made a wee what app group.

we all tend to live quite far away from one another
but we are all in our (early) 50s with husbands with yod.

I’m 50’s and have young children and a husband with yod

Hi @Mitzington@RememberDecember@Alzssucks. I am sorry you're in this position too. It's so rubbish. I am glad you have an online support group Alzssucks - that sounds like a really good idea. How did you 'meet' each other in order to start it, if you don't mind me asking? Having a husband with young onset dementia must be awful.

Mum's problems have increased since I started this thread. Her care agency (self funded) are awful and are letting me down at every turn. Today's challenge is to try and find a new one, probably one which can do live in care, but also to investigate care homes. Mum told me years ago that she never wanted to go to a home, but her problems might be increasing to a stage where that is unavoidable, depending on if live in care would work. She is sadly/happily still aware enough to know her home and to be very settled there so I know she would absolutely resent any move... And me when she remembers who I am.

Christmas was hard. She takes up so much of my time, but I was trying to keep Christmas nice and special for my family. I spent a lot of time doing false jolliness. When my sibling decided to visit (for first time in ages and facilitated by me) she was thrilled and actually simultaneously said how glad she was to see them and then asked me who I was. Ouch.

Putting up and taking down her decorations was hard. I am pretty sure it will be the last time and that was always on my mind. And 'happy new year ' was very painful too. I am pretty sure it won't be happy and that 2026 will be a year I want to forget.

She definitely didn't like the groups as I was there. And it fits with how she always was. She and Dad only had each other and no friends. Dad had work colleagues, but she had noone else for 40+ years as she was a housewife. She didn't want friends and never understood why I did or why I wanted to keep in contact with people from previous education/workplaces. So it's not really a suprise that she wants to stay at home and doesn't want to meet people!

I was the only child of a single mother with dementia (she died last year). She was in a care home for several years. No one 'wants' to go to a care home but sometimes it becomes the best option. My mother was fairly sociable but there were other ladies in there who weren't and they could choose to spend more time in their own rooms.

She had care at home for a while before the care home, and I used Home Instead who were brilliant. If they have a franchise in your area you could try them. I thought about live-in care but it is more expensive than a care home and her funds would have run out a lot earlier. And you might find that your mother will not tolerate 'a stranger' living in the house any better than a care home.

When my mother moved to the care home I only expected her to live another 3 or 4 years but she was there for 7. For the last two years she was immobile, doubly incontinent and unable to feed herself. The care home had all the equipment, care and staff she needed.

So very sorry for what you are going through reading through a couple of your posts now with updates,I cant add any advice but know how very hard it is. Different to you my mum supported my dad ( and she was his prime carer) but he went into care as she couldnt cope anymore and it really was the best decision - we were lucky as we found a good one and SS were pretty useless and not helpful at all... Sedning you strength

Christmas is rubbish when you're dealing with dementia. I haven't had a dementia-free Christmas since 2015. I'm so sick of not being able to have the kind of Christmas I want. I try to let New Year pass me by. Reflecting on the Year that has gone and looking ahead to the one that is to come gives me no joy.

@FiveFoxes i think I am at a similar stage to you, albeit looking after 2 parents with this dreadful disease. I’m so sorry, it is bloody awful.

If helpful, I use Home Instead as @catofglory mentioned, I have found our local franchise to be excellent and would recommend. I looked at 3 care homes last month, but none of them were quite hitting the mark. I need to look at some others. I also investigated live in care, which might be an option if they need more care and cheaper than both of them going to a care home. Realistically, I want to try to keep them at home whilst there are 2 of them and it is safe, but once one of them passes I think the other will decline even more rapidly and will need to go to a home. But who knows whether that will be possible to wait that long. At least visiting some care homes might help us both prepare for what feels inevitable @FiveFoxes

@Justbecauseyoucandoesntmeanyoushould i am so sorry, that is such a long time to be haunted by dementia. I completely understand the lack of joy at looking at the year ahead.

I thought I’d mention that I‘ve come across a support service for adults caring for ageing parents - www.carents.co.uk

I’ve not used it myself yet, but nice to know something specific exists!

Thank you for recommending Carents. I have had a brief look at the website and it looks interesting! Unfortunately I have no capacity to look at it much more than that at the moment as things are bad with my Mum again now, sadly.