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

[Cheshire Cat]

@Bozza my heart goes out to you, really does. If your experience is anything like mine (have been through twice) there's no easy way of saying this but it's almost certainly going to be the most challenging period of your life. The potential problem scenarios are almost infinite to define, you won't / can't foresee until they happen to an extent. And a huge amount depends on the behaviour changes your dear Mum develops unique to her. Because boy did we face several extremities that even the Pro's were at a loss to help with. Without exaggeration, it broke me / my family alongside other unforeseen trauma's we had to contend with at the same time. I sincerely hope luck is kinder to you in that respect.

But this thread isn't about me, it's about you and so where I will impart some advice is the looking after you and your family side of things rather than your mum (without sounding callous). Naturally all the advice tends to be about the person with this terrible and terrifying illness, and what you should do to try and understand them. Everyone else and everything else becomes secondary. But work, relationships, your own health and possibly even safety may be jeopardised if you don't get some routines, planning, assistance (formal, family, friends), breaks and regular re-appraisals of the situation rigorously in place to take care of you, your partner and son too. You may otherwise become exhausted, your life on hold to the point of permanency for several years even and the cumulative strain becomes unbearable, which, ultimately it will be i.e. she'll almost certainly need to go into care at some point and you have to realise / plan for this. Don't let it reach breaking point first, for anyone in your family, it's too late then. Taking each day at a time isn't a plan. It's wishful thinking, even if it is completely understandable approach.

I'm sorry to add that so many people don't understand or realise dementia is a terminal illness. You will likely begin bereavement before it actually happens so in tandem take advantage of the abundance of mental health and CBT resources out there or you may have access to help in this sense. I found most of the major charities nice but rather useless I'm sorry to say - their internet family websites where family real front-line experiences can be read or bluntly discussed are far better. Those that work in the care industry I cannot speak highly enough of and hope you get the same luck we had in this sense.

Wonderful times with your mum do still lie ahead, so realise these at the time, cherish and hang onto for 'when skies are grey', that's probably the most valuable advice I can give anyone.

All of this.

Putting Ms Cat into a home was the the most traumatic thing I have ever done, and I'm still not over it almost exactly a year to the day later.

As for the various charities - most of them just annoy me, all that "singing for the brain" bollocks.

And every time I have heard a news report today about the government's social care review, I have had to turn the radio off because I was swearing at it so much...."f***ing liars, f***ing lying about f***ing lies" etc..... Three years just to do a review - FFS.

 

[Bozza]

@Bozza my heart goes out to you, really does. If your experience is anything like mine (have been through twice) there's no easy way of saying this but it's almost certainly going to be the most challenging period of your life. The potential problem scenarios are almost infinite to define, you won't / can't foresee until they happen to an extent. And a huge amount depends on the behaviour changes your dear Mum develops unique to her. Because boy did we face several extremities that even the Pro's were at a loss to help with. Without exaggeration, it broke me / my family alongside other unforeseen trauma's we had to contend with at the same time. I sincerely hope luck is kinder to you in that respect.

But this thread isn't about me, it's about you and so where I will impart some advice is the looking after you and your family side of things rather than your mum (without sounding callous). Naturally all the advice tends to be about the person with this terrible and terrifying illness, and what you should do to try and understand them. Everyone else and everything else becomes secondary. But work, relationships, your own health and possibly even safety may be jeopardised if you don't get some routines, planning, assistance (formal, family, friends), breaks and regular re-appraisals of the situation rigorously in place to take care of you, your partner and son too. You may otherwise become exhausted, your life on hold to the point of permanency for several years even and the cumulative strain becomes unbearable, which, ultimately it will be i.e. she'll almost certainly need to go into care at some point and you have to realise / plan for this. Don't let it reach breaking point first, for anyone in your family, it's too late then. Taking each day at a time isn't a plan. It's wishful thinking, even if it is completely understandable approach.

I'm sorry to add that so many people don't understand or realise dementia is a terminal illness. You will likely begin bereavement before it actually happens so in tandem take advantage of the abundance of mental health and CBT resources out there or you may have access to help in this sense. I found most of the major charities nice but rather useless I'm sorry to say - their internet family websites where family real front-line experiences can be read or bluntly discussed are far better. Those that work in the care industry I cannot speak highly enough of and hope you get the same luck we had in this sense.

Wonderful times with your mum do still lie ahead, so realise these at the time, cherish and hang onto for 'when skies are grey', that's probably the most valuable advice I can give anyone.

My sister is very worried about me, and I think if I'd shown willing, we would be exploring care homes now as an immediate next step.

It is incredibly challenging, as you say.

By 9:30 this morning I was emotionally spent and broken, and my mum had only been awake for an hour. She was suffering extreme paranoia, to the extent she wouldn't go into the bathroom with the carer - she was trying to drown her, nor allow one of us to make her a coffee - we were trying to poison her.

Most of her medication is to be taken at breakfast time, and she was refusing to take them - "none of them make me feel better". There's an element of truth in that - some are essentially for maintenance - for the heart and blood - to keep things ticking over. So, if she didn't take them, she'd likely feel considerably worse.

Then she drifted into this not being her home - it has been for 15 years - and how she recently "did a bunk" jumped on a bike outside - she can't ride a bike - and went to "my home down the road" where she didn't take any medication and she felt a lot better. Then she told us she'll be going there again when no one is looking.

I had to head back to my home to attend to a few bits. before going to a meeting with the care company to plot the way forward.

By the time I got back to my mum's all was good, and it's been absolutely fine all afternoon and evening.

I'm aware a lot of people get worse in the early evening - "sundowning" - but my mum is definitely worse in the morning.

I wasn't going to go to the game tomorrow but, as things stand, I think I will.

 

[portlock seagull]

All of this.

Putting Ms Cat into a home was the the most traumatic thing I have ever done, and I'm still not over it almost exactly a year to the day later.

As for the various charities - most of them just annoy me, all that "singing for the brain" bollocks.

And every time I have heard a news report today about the government's social care review, I have had to turn the radio off because I was swearing at it so much...."f***ing liars, f***ing lying about f***ing lies" etc..... Three years just to do a review - FFS.

Am so sorry to learn, it is undeniably the most terrible day when it comes. I had to basically trick my Dad into thinking it was a Hotel. When I left him there, I fled. No other word for it. Just shouted 'go go go' at my dear wife who'd driven us there. I was in pieces, just writing this even now, years later, feels traumatic (stomach is churning and adrenaline has flooded my body). I don't think you're supposed to ever get over it. You learn to cope better that's all. When I met up with my brother, just he and I, later that evening I said I felt like a dirty Nazi lying to a jew on his way to a 'shower' in one of the camps. Strangely, he said he'd been using the same comparison about himself too all day. The pain in terms of guilt and helplessness was indescribable. Close my eyes now and I'm still there. We loved him so much, and felt completely failed him as it was his greatest fear. Like you, I've still not come to terms with even though he died 18months ago after 2 years in care. Now I've teared up, so sorry I'm going to bow out of NSC and wish everyone a pleasant evening. Take care. Tomorrow's another day

 

[JamesAndTheGiantHead]

If you haven’t already, tap into the telecare market as soon as possible.

West Sussex County Council use NRS Healthcare, I’m sure they operate in East Sussex as well. There’s some really impressive telecare equipment available these days which can be paid for on a weekly basis, as a subscription, rather than forking out for individual equipment.

https://www.nrstelecare.co.uk/

I would be asking for a Care Act assessment for your mum which should give a current ‘baseline’ of what she is able to do and what she needs support with. This will be helpful in future to gauge any changes and additional areas she may need support in. Social services should request an OT assessment to consider adaptations/equipment at home to make everyday tasks as easy as possible.

Request a carers assessment for yourself, Carers Support UK are a good source of help and can signpost you on to other helpful resources.

 

[timbha]

My sister is very worried about me, and I think if I'd shown willing, we would be exploring care homes now as an immediate next step.

It is incredibly challenging, as you say.

By 9:30 this morning I was emotionally spent and broken, and my mum had only been awake for an hour. She was suffering extreme paranoia, to the extent she wouldn't go into the bathroom with the carer - she was trying to drown her, nor allow one of us to make her a coffee - we were trying to poison her.

Most of her medication is to be taken at breakfast time, and she was refusing to take them - "none of them make me feel better". There's an element of truth in that - some are essentially for maintenance - for the heart and blood - to keep things ticking over. So, if she didn't take them, she'd likely feel considerably worse.

Then she drifted into this not being her home - it has been for 15 years - and how she recently "did a bunk" jumped on a bike outside - she can't ride a bike - and went to "my home down the road" where she didn't take any medication and she felt a lot better. Then she told us she'll be going there again when no one is looking.

I had to head back to my home to attend to a few bits. before going to a meeting with the care company to plot the way forward.

By the time I got back to my mum's all was good, and it's been absolutely fine all afternoon and evening.

I'm aware a lot of people get worse in the early evening - "sundowning" - but my mum is definitely worse in the morning.

I wasn't going to go to the game tomorrow but, as things stand, I think I will.

Please go tomorrow

 

[ozzygull]

All I can say is that I am so sorry for you, I had to go through this a couple of years ago and I was not local which made the whole thing really difficult. You are doing your absolute best, but you will still feel guilty, try not too. Look after yourself as well.

 

[Cheshire Cat]

Having said the care home decision was and is traumatic, it was also the best and only decision to take.

A year on, her dementia and some other issues are significantly worse, but she is safe, warm, fed, clean, put on weight, and somebody else has to do the arse-wiping and cleaning up the so a result there

 

[robinsonsgrin]

Apologies @Bozza , not had time to scroll through all posts...



https://www.beehivecare.org.uk/our-care/dementia-hive/ Ferring - recommend a convo with them

Sage House, tangmere also a good source

https://www.sussex.police.uk/notices/af/herbert-protocol/

ensure registered on gp care registry

P of A whist mental capacity is still there

get yourself in touch with carers support west sx

Has mum had a social care assesst?

 

[timbha]

Please go tomorrow

Did you go Bozza? I really hope you did and had some fun

 

[Uncle Spielberg]

My Mum asked the same thing 10 times in 10 minutes but she remembered something from 50 years ago it is a horrible and wicked illness. What I found is she loved music from when she was younger so maybe songs for your mum when she was in her 20s and 30s might have good results

 

[alanfp]

You all have my sympathy. In hindsight, I know that I got off lightly with my parents' situation.

The only practical advice I can offer is to do your research on care homes sooner rather than later. When my father had to go into a nursing home at very short notice (i.e. "can you take him if we get him to you tomorrow?") we already knew where the best place was, because we had done our research and visits a few years prior to actually needing it.

 

[um bongo molongo]

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.

Do you know if there’s an established process for this? I’m having a nightmare getting my parents to agree to care (both have dementia). They reluctantly agreed to two hours a week which we now have in place but it’s the cost they mostly object to (they don’t think they need the help, which is of course not correct). So it’s going to be a constant battle to increase it. I also think the lack of social interaction is not helping. But back in the day they did some fostering and I think I could definitely sell them on this type of arrangement on the basis that they’d be helping out a young person.

 

[um bongo molongo]

Not without some reconfiguring, which would be possible, but there's more to it than that...

Our home is two-storey and on a hill, whilst my mum's is a bungalow surrounded by level ground. It's easy to get in and out of my mum's house, ours has four brick steps to the front door. My mum broke her hip in April, and her mobility is still very restricted, requiring a wheeled zimmer inside the home and a rollator outside of it. Her home is perfectly-suited for her condition, whilst ours is the absolute opposite.

Inside the house there are a lot more things that could go wrong here, then in her own home.

Beyond that, I'd be very concerned on the impact to our family - my partner and my son. It's little things like my mum having her heating on between 25 and 30 degrees, so she feels warm enough, whilst our house is literally never that warm.

We have a dog, and she likes to treat him, which is great. During times noone is at home, I would be concerned about what she may give him (eg chocolate etc), believing she is doing good, but could end up harming him.

I've also spent a fair bit of time reading through threads on the Alzheimer's forum, and there's a strong trend of people taking their loved one in, it not working out, and then finding they are sort of trapped with no obvious path to change that arrangement. It feels incredibly selfish when talking about the care of my mum, but I have to try and protect the well-being of our family unit, and I do fear what moving mum here could do to that.

Beyond all that, I simply don't think she'd want to.

I don’t have much to offer in terms of advice on this thread as you are slightly further down the path than I am, other than to say that I don’t think this is selfish at all, and that I know my parents, in their more lucid days, would definitely not have wanted me to sacrifice my own life to look after them.

 

[um bongo molongo]

You all have my sympathy. In hindsight, I know that I got off lightly with my parents' situation.

The only practical advice I can offer is to do your research on care homes sooner rather than later. When my father had to go into a nursing home at very short notice (i.e. "can you take him if we get him to you tomorrow?") we already knew where the best place was, because we had done our research and visits a few years prior to actually needing it.

I don’t want to derail this thread, but does anyone know if there’s an existing thread on care homes? I’m wanting to get ahead on this as you suggest but haven’t lived in B&H for 30 years now and don’t really know where to start.