Can people with dementia live alone at home?

[Simon_16091]

I don't know. At the end of the day my only concern is my mum lives a quality life as best she can until she can't. Quite frankly I don't care and why should I in my personal life I don't care about all of the things people think that they do care about. Some of the stuff I have read is absurd on this forum, and sometimes people leave it too late...so they get angry......that is their own responsibility and yes...its tough...unfortunately.

In my lifetime as an ICU nurse I have seen more compassion and care from loved ones looking after their kin immediately dying in front of their eyes than I have seen on here.

I don't care what anger issues people have or who they want to target...and quite frankly if I am the newbie who people want to have a go at...then do it....get it off your chest and be done and then leave me alone.

And I don't care about the carers...because I am sick of people who think 'they know how to care' but are full of the contrary. No one can define care, it is impossible. Care is unique and in many infallible ways. (and I don't mean 'professional care' !!)

I love my mum, and I will do what it takes.....whatever it takes until the time comes!!!

[jenny lucas]

Simon, very glad to see you here still!

Yes, caring is a tricky beast that is for sure. I found myself, having been 'landed', quite unexpectedly, with my MIL, that I didn't like even to use the word 'carer' about myself - because, and this is horrible to admit, but it's true, all the same, actually I DIDN'T care! I didn't - and still don't, because, brutally, fond as I am of her, I don't love her - actually 'care' about her!

I cared FOR her, but I didn't care 'about' her, if you see what I mean! It's because there are no heartstrings. I do feel compassion for her, because it's grim to be the way she is, but, over and over again, when I actually had to do the looking after personally, I simply resented her TOTALLY. To my mind, she was 90 y/o, with dementia, her life had gone on far too long and she had no 'right' to being alive when my husband was dead in his fifties. I was angry and 'outraged' that I was expected, after all I'd gone through losing my husband, to have to suddenly give up my entire life to keep this very very old woman, whose mind was going, 'happy'.

That's a pretty vile admission to make, but it's true. And it's why I did 'put her in a home'......I did 'abandon' her.

But it's a complex moral issue! I may well be treated in exactly the same way by my own daughter-in-law in the years to come, and then I will be 'done by as I did'......and I won't have any grounds to complain, will I?

Yet again, for quite a few folk, and I've seen examples of it here on the forum, there are elderly parents who are quite simply 'selfish' - they expect their children to give up their lives and look after them. They are demanding, cantankerous and ungrateful. I've seen a poster here say that when they tell their mum how hard their life is having to look after her, simply tell her daughter sneeringly 'Oh, poor diddums!'....THAT is the kind of thing some carers have to put up with!

Old age can make even the nicest parent 'selfish' (and perhaps make monsters out of parents who always were narcissistic and selfish!), mainly because a sense of 'others' starts to fail. I use the term 'elderly toddlers' because that is what it becomes like - you can't expect a toddler to be 'grateful' to their parents for looking after them, and in that sense neither can you expect a very elderly person....let alone when dementia sets in.

So, overall, I guess my own take is that the whole issue of 'caring' is very, very morally tricky all round.

And perhaps the final factor is 'time'. What we can do for a short time, is not necessarily what we can do for years, and years, and years. If someone had said to me 'I guarantee your MIL will have spent her last Xmas with you' then I'd have squared my shoulders, set my life aside for the next six months or whatever, and given her the 'happy homelife with me' that she wanted. But three years on she's still here, and there are folk here whose parents have last much, much longer.

Society, as we know, is not set up to provide good support structures for families, and in a way we are 'reverting' to the 'olden days' when all care and support had to come from within a family, which is fine when you've got one!

Anyway, I'm glad you're still here, and all the very best with your mum.

[christina 17]

I so totally agree with all that you have said in your post Jenny.

If it were my mother in law that needed care, I know I couldn't do it, but I would oversee her care as you have done. (she passed away 5 years ago, age 92, living independently with my father in law)

I have looked after my (now age 90) mother with all her numerous physical disabilities and memory problems, in her home at first for a few years and then in my home for nearly 3 years. Four weeks ago, my mother decided to live the rest of her days in a residential care home. It is the one one she went into for respite.
She said she wanted to be with people her own age, for me to live my life with my husband and granddaughter, who we care for and she knows we have a daughter who has MH problems.
(I also visit my father in law aged 95 who had a stroke earlier this year, but still lives in his own home).

I was so upset with mum's decision, but could not deny my Mum's choice and felt what had I done, to make her feel that her life in a care home would be better?
My sister said (she lives in Australia) that Mum was giving me a gift as I had given her a gift of showing her, when she went into respite, that the care home was not frightening or horrible, that she was being cared for, that she did have regular visits from me, overseeing her care, so she must have decided that the care home was not too bad a place to stay in.
I have offered Mum that she can come back home anytime, if she likes and then go back into the care home anytime. But she says no, I don't think I want to.
I feel guilty regularly, especially as I drive back home - it's only 10 mins drive away, so I am lucky in that respect.
I do feel Mum has deteriorated a bit since being there, but I have to remind myself that it may have happened anyway, as Mum has deteriorated this last year as well.
Mum struggles to say a sentence, sleeps alot or just watches TV, she has said many a time that she is waiting to die, since her fall 3 years ago.
I have to remind myself that I still have Mum for the present and am lucky that the care home is quite good.

This forum is such a good support.

[Simon_16091]

I agree with you both.

For me it is not a moral issue, but about fending off certain family members who wish to moralise on their own and then impose.

For me the difficulty is being left to decide with mum what is best for her, with no support from kin or kindred.....unless they object. There is no dialect or conversation.....just aggregated views and personal bias

From the day my dad died till now I have lived with this day in and day out and held down my own job and commuted some one hour and thirty minutes each way. I have argued to dawn over a safety issue and fended of people who just want to intrude but know nothing

What really gets to me is that my older brother only thought he had rights to mums estate and would have done anything to take it. But here are mum and I a year on......and all that is left is just mum and me....as my brother somehow has realised he has nothing to gain.....meh...since I involved a solicitor

I am the dregs of all.....I am the person who helps mum the most.....but also the easiest to blame

[Marisa_1610]

Hello - I've recently joined the forum and finding it very useful reading other peoples experiences. My mother is 78 and recently diagnosed with vascular dementia. My father passed away 5 years ago and she's been incredibly lonely since. She doesn't have any many friends nearby and isn't the type to take herself to local social groups and relies a lot on my sister and me visiting her at the weekend, but she does pop out to the shops and goes to church every Sunday. We both live about an hour away and work full-time so we can only really see mum at the weekend. She's healthy and active and totally self-sufficient apart from bills and household stuff which my sister and I manage for her. She doesn't have a clue as dad used to do all of that for her. Anyway, she's recently hinted a couple of times that she might like to sell the house (she's been there for almost 50 years) and move closer to me or my sister. However, I know she loves the house dearly and has many memories of dad there (she still has furniture they bought together for their wedding in 1960!) I'm worried that moving home and to a completely new area she doesn't know might make her condition worse. Also, as we're all working during the week she may feel even more lonely. I was just wondering if other carers had experienced anything similar and if the moves worked for the best? Many thanks. MV

[MrsAverage]

Hi Marisa
As mum is considering a move I would try to steer her towards a care home rather than buying a property. With capital behind her she could chose a nice one in a convenient location. Then she can choose whether to join in activities or socialising as much or as little as she wants. She would be fed and safe and you and sister could enjoy visits and take her out while she is still able.
Then as her dementia deteriorates she is already where she needs to be.
If she simply moves property the likelihood is she will have to move again and it will be more distressing the second time.
Yes any move will be disorienting, my mum took several months, nearly a year to fully settle in her care home . She had made the decision rather than it being foist upon her so to get your Mum to buy into the idea is quite crucial.
Hope this helps
MrsA

[jenny lucas]

Hi - this reply is to Simon.

Simon, for some reason I never spotted your post in late September, so apologies for that!

I can feel your indignation at your brother, and utterly sympathise with it. Well done for 'seeing him off'. I don't know why you see yourself as 'dregs' - and I do hope you are being sarcastic! Because obviously you are WAY better than him!!!!

Your love for your mum shines through ( ) and is so heartening to see. I know in my previous post I wrote 'harshly' about the 'burden' of caring for elderly people but the reverse can also be true - it depends on the person needing care!

I do also want to say that although I don't 'love' my MIL, I AM genuinely very fond of her, she's been a great MIL all my life, and I'm so, so sorry that she has 'ended up' like this - 'if only' she had died of a stroke or some such while she was still living independently. If she could see how she is now she'd hate it! She was a very resolute woman, who bore a lot in life - widowed for thirty years, and saw he own son die, and her surviving one move to the USA.

For me, it was the 'total caring' that I could not cope with - the 'having her live with me' level of caring. Once she had moved to a care home it was completely different! As long as I can 'hand her back over' to 'someone else' then my visits to her are lovely! I take her out as much as I can, we go for drives along the coast, stop for cream teas, and I 'chatter away' about the family and so on, and memories too, about her family and my late husband, and although I know she doesn't actually remember them, I like to 'remember them for her'....

Yes, I pray nightly for her release from this sad world (for I hope she will be reunited with her parents, husband and her son!), but that is more for 'her good' than mine. I simply 'could not' look after her myself, and now that I don't have to, it's so, so, so much easier.

BUT, if it had been my own mum (or dad), I think the situation might have been very different. Though I think I'd still have preferred not to have to look after them 'non-stop in my own home' if you see what I mean.

Anyway, kind regards, Jenny

[jenny lucas]

Marisa, I agree with Mrs A.

May I also suggest that you check out Abbeyfield homes. My MIL was in a slightly similar situation, in that she lived a long way away (400 miles in Scotland!), and really needed to move closer to me. Knowing that I could not cope with her 'moving in' (when she stayed for weeks at a time I went spare!), but also knowing that dementia was setting in, I just didn't know what to do for the best.

I originally thought of her buying a 'retirement flat' in one of the sheltered accommodation blocks in my area, but since I live in the Home Counties, I'd have needed three times what her own flat in Scotland was sold for! So that was out of the question. Then I looked at simply renting a flat near me - expensive, but at least affordable 'for the rest of her life' (she was 89 at the time).

BUT, over the months I realised that actually, with the dementia worsening, she was becoming more and more dependent on me (also because she was staying with me for weeks at a time, and 'losing the ability' to do anything for herself, even making herself a cup of tea - or maybe she was just getting used to me 'doing everything' for her (I used to call my house Hotel Jenny that had only one guest - MIL!)

Anyway, quite by chance I discovered Abbeyfield. I discovered it because on the Right Move 'flats for rent' website it kept showing up as 'for rent' but 'all inclusive', and that gave me the clue.

So, what it proved to be was a very pleasant old house, with a range of 'bedsits', slightly varying in price, and the deal was a monthly rent which included electricity and heating (phone was extra if you wanted it - MIL was beyond that by then!), an ensuite, and the ability to have a fridge and a kettle in the room (they'd had to stop toasters, as residents kept setting off the fire alarms). There was a shared kitchen to make breakfast in (everything supplied), and a laundry room (though again, MIL was 'beyond that', and I did all her laundry). You had to furnish the room (a friend gave me her old sofa that she was replacing, and I had a single bed delivered, other than that all the 'bits and pieces' came from her own flat, plus her TV).

The great thing was that meals, other than breakfast, were all served in a communal dining room, and were very good (the home's manager's wife was the chef!), so everyone ate lunch and dinner together ('communal' tables). There was a residents' lounge for coffee, and communal TV, and there was 'some' activities provided (not a huge amount, but some.)

Residents obviously could 'come and go' as they pleased - either walk or a short bus ride or a taxi ride into the small commuter town nearby.

I actually thought the whole set up was brilliant! As MIL's dementia 'settled in', it was clear she couldn't really cope with making her own breakfast, or 'getting up' on her own, so a morning carer was booked (via the Abbeyfield itself), which coast I think £15 a day, and the carer would help MIL get up and showered and dressed, and then help her make breakfast and 'settle' her with the TV.

The monthly 'all inclusive' rent was around £1500, which, when compared with a monthly rental cost of a flat near me of around £1000, on top of which would be utility bills, I thought was pretty good.

Also, to me, the most brilliant aspect was that the rent was 'monthly'. ie, you only had to give a month's notice, and you could leave any time. As you know, a normal rental is for six months at least, to begin with - quite a commitment.

I felt the Abbeyfield let MIL 'try out' moving south, in a very sheltered environement that was a very good compromise between 'complete independence' and 'a care home'.

The great thing for me was that MIL was 'settled', she was near me (10 minutes drive), in a lovely room (I took one for her that had a patio - she never really went out, though!), in a very nice house with beautiful gardens, and a lovely manager, great staff, friendly other residents (most female), and lunch and dinner provided daily.

It meant that I no longer had to offer 'Hotel Jenny', I got my life back, yet could visit her twice a week and take her out - in fact, she came for twice weekly 'sleepovers' with me, which were 'doable' by me.

So, all I can say is, if you could find something similar in your area, I strongly recommend it! Ideally, your mum could 'try it out' BEFORE selling her own property or making any 'drastic' decision. I felt that because it was rented, and because there is only a one-month notice period, it was a REALLY good idea!

[Marisa_1610]

Many thanks for all the replies.

It's really helpful to hear other peoples experiences. The sheltered housing experience would definitely be best, but I can't imagine how heartbreaking it will be for her to leave all her wedding furniture I'll chat to my sister and see what she thinks.

Thanks again

Marisa

[bowlingbun]

Having been through the war, many people worked so hard for furniture, and it means more to them than later generations. My mum was obsessed with Ercol, and probably had the world's largest collection (not kidding, over 60 dining chairs for starters!!!) but ultimately, she had to leave it all behind when she went into a nursing home.