[Misc] Experience of parents or similar with dementia/Alzheimer's living alone

Vetinari · Jan 1, 2025

Hi Bozza sorry to hear things have taken a turn.
It sounds very much like the situation I have/had with my Dad.
About 18 months ago my mum passed away and she was basically carer for my dad who has dementia.Like you my sibling lives far away and it was left to me to make all the decisions and arrangements.I felt very out of my depth and constantly worried if I was doing the right thing.
Fortunately the small amount of money they had allowed for full time live in care for a while and this took the immediate short term stress of day to day care away.I would go in and see him every day and a couple of times a week he would come over and eat with us.Over the months we realised that residential care would be best for him as the tv and my visits just weren’t stimulating enough for him and there was a visible decline in him.
So we visited care homes and we found a great one in Haywards Heath.He’s been there about 5 months now and he has settled in amazingly well and it’s the best thing we did.I probably would have done it sooner but the thought of him leaving his house of over 50 years (our childhood house) weighed heavy on me and I realised I wasn’t doing him any favours by letting him stay there and it was only my guilt that was stopping me from doing the right thing.
Hope this is of some help and I realise everyone’s circumstances are different.
The attendance allowance is a great shout and if you haven’t done it already contact West Sussex (or East depending where you are)adult social care,they were really good and help you with all the options.
Good luck mate

Vetinari · Jan 1, 2025

Also as hard as it can be try and get the power of attorney sorted as soon as you can,both the financial and the health and welfare…..they seriously are game changing as you can seamlessly make all the decisions then.

Weststander · Jan 1, 2025

Sorry to hear that @Bozza, as others have said make sure you care for yourself too. Physically and mentally.

If there are no serious funds for wholly private care/nursing homes, social services will effectively choose one. Mrs.W has an inside track on many of the establishments, let me know if you have homes in mind (if you want).

Practical stuff for now. Where there are the serious fears you expressed of them leaving the house and getting lost/hurt, folk are often locked in. Carers/family using a key safe.

This place can’t be recommended highly enough for your mum to spend part days

Lovejoy Centre

DAY CENTRE AND RECREATIONAL ACTIVITIES

lovejoycentre.wordpress.com

joydivisionovengloves · Jan 1, 2025

Sorry to hear that Bozza, that's utterly crap.

I remember when my niece was doing her medical training she told me about some of her friends who rather than paying expensive rents as they trained, Iived in with older people who needed help and support. It seemed like an ideal exchange. Might be worth checking out.

aolstudios · Jan 1, 2025

Bozza said:
Sorry, this is likely to be a rambling brain-dump...

As per a post a day or two back, due to a family bereavement, we're suddenly in a position where my mum, who has dementia and Alzheimer's is going to be living alone.

Today I feel very worried, actually quite panicked. My sister lives away from the area - with a job and family etc - she comes down as often as she can, but essentially the day-to-day is all on me.

We have a care package of four visits a day - breakfast-ish, lunch-ish, dinner-ish and 9-10pm-ish.

I can supplement that by going in a few hours most days, probably after school drop-off until I need to walk the dog again, so something like 8:30-12:30.

My concerns are wide and varied...

- What if mum leaves the house and gets lost/comes to harm? Mitigation: I hope to install cameras/doorbells that would alert me.
- Similarly inside the home - pretty low risk, I think, but not no-risk. Mitigation: cameras/two-way echo show devices or similar.
- Loneliness / mental well-being - my mum would be spending quite a bit of time alone. Being frank, she likes TV, but a life with mainly TV for company isn't great is it?
- What when I have other things on, or want to go on holiday for a week or two?

The care company tell me they have plenty of people like my mum living semi-independently, which gives me some encouragement, but I'm still very, very worried. I veer from "we've got to try this - it could be OK" to "this is horrible - this can't possibly work".

My mum doesn't have a lot of money and care costs as they are, there's a limit to what I could do for any period of time in terms of paying for additional care or even some company/human presence.

So, please share any experience you have - good and bad.

My Dad was diagnosed with terminal cancer at the same time as Mum's dementia hit hard, so I moved in.
It was hell & also an absolute gift I wouldn't change. Barely got out of it in one piece though, I'd take all the outside help you can get, @Bozza
Good luck

Springal · Jan 1, 2025

My partners nan has dementia , she was in assisted living block but had to move into a care home. Her money was gone within a year but luckily the care home had some NHS funded rooms so she didn’t need to move location or change staff thankfully

Did take a huge strain off her son and daughter when she did

thedonkeycentrehalf · Jan 1, 2025

My friend‘s dad is currently in Worthing hospital with dementia.

Not sure if you have been there already but he said that there is a dementia charity place in Ferring (Beehive care) which him and his mum found very helpful with advice and support.

BrightonCottager · Jan 1, 2025

Vetinari said:
Also as hard as it can be try and get the power of attorney sorted as soon as you can,both the financial and the health and welfare…..they seriously are game changing as you can seamlessly make all the decisions then.

I agree its important to try to get PoA or Deputyship in place but I've found it a royal pain in the arse to deal with some financial institutions who all want different forms of proof of PoA (its an old school paper one) and my and my mum's identity. National Savings and Leeds Building Society have been the worst.

Bozza · Jan 1, 2025

thedonkeycentrehalf said:
My friend‘s dad is currently in Worthing hospital with dementia.

Not sure if you have been there already but he said that there is a dementia charity place in Ferring (Beehive care) which him and his mum found very helpful with advice and support.

Yeah, they run a thing called "D Cafe" a few times a week.

I got my mum down there once and, as you say, the people were lovely - genuine heroes - but my mum claimed to not like it and won't go back. Which is all a bit ridiculous as it's right up her street - being able to sit down and natter away for a few hours. She was a hairdresser by trade, and what she enjoyed most was the social aspect of the work.

I'm going to try again next week. Maybe try playing it as an appointment to attend, rather than a "Would you like to...?", as that may have a higher chance of success.

Apologies for not replying to everyone - there's a lot there and I'm largely trying to work on how I get things set up at my mum's, where I'm typing from now.

LamieRobertson · Jan 1, 2025

Bozza said:
Yeah, they run a thing called "D Cafe" a few times a week.

I got my mum down there once and, as you say, the people were lovely - genuine heroes - but my mum claimed to not like it and won't go back. Which is all a bit ridiculous as it's right up her street - being able to sit down and natter away for a few hours. She was a hairdresser by trade, and what she enjoyed most was the social aspect of the work.

I'm going to try again next week. Maybe try playing it as an appointment to attend, rather than a "Would you like to...?", as that may have a higher chance of success.

Apologies for not replying to everyone - there's a lot there and I'm largely trying to work on how I get things set up at my mum's, where I'm typing from now.

You are thinking logically ….whereas as you know your Mum isn’t always ……good idea to try again on the appointment bit …bit of tough love….its all a complete reversal of being brought up….now it’s you who know better than your Mum

Seagull's Return · Jan 1, 2025

My dad is in a similar position to your mum; I haven’t got much to add to the excellent advice already given, but I’d emphasise the need to keep an eye on your own energy, health and sanity. Getting on top of little things (like disconnecting cookers, hobs, kettles, etc.) is very good for peace of mind. Also, in my dad’s case anyway, establishing a simple and clear daily routine was really helpful, and trying as far as possible not to deviate from it.

But basically I’d say, hang tough and do the best you can. And enjoy your time with your mum whenever possible, however unlikely that may seem sometimes! Best of luck to you both.

LamieRobertson · Jan 1, 2025

I almost feel there should be some sort of compulsory training (for want of a better term) to help us all deal with these situations….i felt totally unprepared to deal with the health issues thrown up by both my parents ….and having to deal with goodness knows how many different organisations…..trying to get ahead of the issues so you could be proactive was difficult…..I was much better prepared….after

Deadly Danson · Jan 1, 2025

As I've previously mentioned, we are a little further down a similar (God awful) path with both my parents. Bottom line is ultimately, as you've said, you'll need to find a care home for her and that will be tough - really tough - but a relief (we've seen loads of new residents struggle to settle in over the last couple of years but eventually they do all seem to get there).

In the short term, we used a company called Agincare who provided a live in carer for my parents. He was called Andrei and he was an absolute diamond. He wasn't cheap but having someone there all the time - cooking, washing and caring etc was such a relief. We still went in every day and took them out to give him a break but it was a good middle road between carers who came in a couple of times a day and the inevitable care home stage.

As other have said, what you are going through just isn't sustainable - I sometimes don't quite know how we are still functioning - so you may have to make the ultimate tough decision soon and that will be the toughest part of it all but it will be the best for both you and your Mum. As always, good luck and all the best.

Tight shorts · Jan 1, 2025

As others have mentioned The Dementia Hive (used to be Worthing Dementia Hub) are a brilliant resource. Lynsey who works there was fantastic with signposting and information. Anne Marie at the Lovejoy Centre is also amazing. Guild Care run a day centre as well. If you do end up considering a care home, top recommendation would be Avon Manor in Worthing, which gives its residents an amazing fun life. I assume you have attendance allowance in place and blue badge for parking. It can feel overwhelming so I hope you get plenty of support. If you can use a tracker, it may come in useful as it did for us once.

timbha · Jan 1, 2025

Bozza said:
Yeah, they run a thing called "D Cafe" a few times a week.

I got my mum down there once and, as you say, the people were lovely - genuine heroes - but my mum claimed to not like it and won't go back. Which is all a bit ridiculous as it's right up her street - being able to sit down and natter away for a few hours. She was a hairdresser by trade, and what she enjoyed most was the social aspect of the work.

I'm going to try again next week. Maybe try playing it as an appointment to attend, rather than a "Would you like to...?", as that may have a higher chance of success.

Apologies for not replying to everyone - there's a lot there and I'm largely trying to work on how I get things set up at my mum's, where I'm typing from now.

This thread is brilliant and thanks for raising it Bozza. Another one going through it here!

In some cases I think we are just seeking permission from someone or somewhere to do what we know is right. All round.

Bozza · Jan 1, 2025

Tight shorts said:
As others have mentioned The Dementia Hive (used to be Worthing Dementia Hub) are a brilliant resource. Lynsey who works there was fantastic with signposting and information. Anne Marie at the Lovejoy Centre is also amazing. Guild Care run a day centre as well. If you do end up considering a care home, top recommendation would be Avon Manor in Worthing, which gives its residents an amazing fun life. I assume you have attendance allowance in place and blue badge for parking. It can feel overwhelming so I hope you get plenty of support. If you can use a tracker, it may come in useful as it did for us once.

I've only met Lynsey on that one occasion, but it was hard not to be massively impressed.

On our one visit to the D-Cafe, Lysney was telling that day's visitors (those with dementia and their carers) about a planned Christmas do, of sorts.

Someone asked how much it was likely to cost. Lynsey's response was that she'd recently had a landmark birthday, and for that she'd asked friends and family for cash donations to go towards the Christmas do. All being well, she continued, the donations would cover the food and at least a couple of drinks for everyone.

Amazing, amazing people.

timbha · Jan 1, 2025

Bozza said:
I've only met Lynsey on that one occasion, but it was hard not to be massively impressed.

On our one visit to the D-Cafe, Lysney was telling that day's visitors (those with dementia and their carers) about a planned Christmas do, of sorts.

Someone asked how much it was likely to cost. Lynsey's response was that she'd recently had a landmark birthday, and for that she'd asked friends and family for cash donations to go towards the Christmas do. All being well, she continued, the donations would cover the food and at least a couple of drinks for everyone.

Amazing, amazing people.

Poor Lynsey is going to wonder why so many Albion fans are knocking on her door

portslade seagull · Jan 1, 2025

My Mother in law suffered with alzheimer's and gradually forgot people's names and how to do simple things. Luckily she lived with my Sister in law who was more or less an unpaid carer. They had to get their gas cooker disconnected as she had a tendency to just turn the gas on and not ignite it. She managed to stay at home until last year when she had an Aortic rupture which took her in a couple of hours which was a relief for both her and the family

Since1982 · Jan 1, 2025

My experience. We lost my Mum in May 2022. Dad, now 89, was totally reliant on her for everything - she was a powerhouse. Since then he has declined physically and mentally. He has carers twice a day which just about he ensures he has survived the night, had a shower and then a hot meal at lunchtime. His mobility is poor, memory and awareness worsening. He is regularly incontinent. He has a fall alarm, is lonely, sleeps much of day, sometimes doesn't make it to bed. It's miserable for him and the family. He still thinks he is independent. I've never had as many arguments with him as I have over the last couple of years. Pressure on the family is enormous. He will move into a care home permanently very soon. Don't underestimate how hard it is.

Anger · Jan 1, 2025

I don’t have any direct experience of this situation, but I have listened to the experience of a colleague at work who was in a very very similar situation with his father (wife was caring for him, then she passed). His father still lived at home for a few months and my colleague fitted cameras in his house so that he could monitor him. He also arranged for carers to visit.

However this arrangement only lasted a few months because his father kept leaving the house and getting lost as well as doing unsafe things around the house itself, so it couldn’t continue and he had to move into a care home which lasted about 7 months before he then passed.

Although everyone is different and as you say your Mother may be fine and less of a wander / hazard risk to herself, but in a few ways your situation sounds so similar to that of my colleague’s that I suspect you may in the end find that the care home is the best for her (although hugely expensive).

Hopefully your first plan will work for long enough, but if you do eventually need to go for the care home route then being able to arrange sale of her property (via P.O.A.) would be essential to cover the cost.

I hope everything works out for you.

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