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



Nitram

Nitram

Well-known member
Jul 16, 2013
2,351
Hi Sorry to hear went through similar with my Dad and wife’s mother.
Presumably you are under West Sussex Social services who in my experience 10 years ago were a shambles of an organisation to deal with, hope it’s changed.
Any decisions should involve an assessment guided by the Mental Capacity Act 2005 to decide what level of compliance your mother has in making decisions about possible moves eg care home.
Assisted living maybe another option that could be investigated.
 




Bozza

Bozza

You can change this
Helpful Moderator
Jul 4, 2003
57,812
Back in Sussex
portslade seagull said:
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
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That's exactly the scenario we had - my mum's sister was the younger, fitter and (relatively) healthier one.

Sadly she passed away suddenly and unepectedly on Sunday night, which brings us to where we are now.
 


Cheshire Cat

Cheshire Cat

The most curious thing..
Nov 4, 2006
11,980
Sitting on a bough of a tree a few yards off...
Are you the registered carer for your mum as it can have some benefits, like access to a carer's assessment?

carers.org

Caring for someone with dementia

There is a lot of advice, information and support available if you care for someone with dementia
carers.org carers.org

Also if you are concerned about an emergency backup, then depending where you live....

esbhcrossroads.org.uk

Services - ESBH Crossroads Care

Our services are designed to give carers a well-deserved break while ensuring the safety, dignity, and independence of those they care for. We value privacy
esbhcrossroads.org.uk esbhcrossroads.org.uk
 




Eric the meek

Eric the meek

Fiveways Wilf
NSC Patron
Aug 24, 2020
7,658
joydivisionovengloves said:
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.
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Very good idea. It gives them cheap rent, and gives you a bit more peace of mind.

Bozza, good luck with whatever you decide. Try not to beat yourself up about it. Easier said than done of course.

When the time eventually came to put our Mum into a home, it was a huge weight off our shoulders. All of a sudden, she was safe, warm, fed, entertained and made new friends. It was a new chapter in her life, but a good one.
 




cloud

cloud

Well-known member
Jun 12, 2011
3,042
Here, there and everywhere
Do you have a spare room in your house that she could stay in? This is what we did with both grandparents and great-grandfather. It means they get to spend their final years with their family, rather than alone with strangers.
 


Bozza

Bozza

You can change this
Helpful Moderator
Jul 4, 2003
57,812
Back in Sussex
cloud said:
Do you have a spare room in your house that she could stay in? This is what we did with both grandparents and great-grandfather. It means they get to spend their final years with their family, rather than alone with strangers.
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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.
 


Seagull's Return

Seagull's Return

Active member
Nov 7, 2003
882
Brighton
it's a bugger, really: in your position you have a responsibility to make some hard decisions, and to be honest I doubt many of us come out of the process without feeling a bit guilty, sadly. By weighing up the pros and cons objectively you'll (a) make the best decisions for your mums welfare, and (b) in doing so, minimise the inevitable guilt.

It seems to me (albeit from afar) that you've got this, Bozza. Keep on keeping on!
 




S

Since1982

Well-known member
Sep 30, 2006
1,659
Burgess Hill
Bozza said:
...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...
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Not selfish at all. Thoughtful and wise. My wife and I made the decision some years ago that we would never be carers for our parents - it would tear us apart and we would be very bad at it. We concluded that the most important thing we could do was the same as the most important thing they did for us when we were children - keep them safe.
 


BrightonCottager

BrightonCottager

Well-known member
Sep 30, 2013
2,932
Brighton
I've been in RSCH A&E for the best part of 24 hours now with my mum who fell over at her care home.

This isn't very nice but we all need to be prepared for the Do Not Resuscitate conversation with the hospital doctors and the general war zone that is Brighton A&E (3 or 4 beds to a cubicle, beds in the corridor, security and police), seeing your loved one in distress and pain, the sights, sounds and smells, the guilt of walking away to get a couple of hours of kip. And how dementia/ Alzheimers interacts with all that. The staff do an amazing job.
 


A

Arthritic Toe

Well-known member
Nov 25, 2005
2,507
Swindon
Its very difficult - I wish you the best. One thing you need to be ready for is that things can change very quickly and it invariably catches you out when that happens. My Mum went through a sudden decline over literally just a few days. Suddenly she was unable to take care of herself and needed 24 hour care. This may or may not happen - its very dependent on the individual and the type of dementia. Be vigilant just in case.
 




Bozza

Bozza

You can change this
Helpful Moderator
Jul 4, 2003
57,812
Back in Sussex
BrightonCottager said:
I've been in RSCH A&E for the best part of 24 hours now with my mum who fell over at her care home.

This isn't very nice but we all need to be prepared for the Do Not Resuscitate conversation with the hospital doctors and the general war zone that is Brighton A&E (3 or 4 beds to a cubicle, beds in the corridor, security and police), seeing your loved one in distress and pain, the sights, sounds and smells, the guilt of walking away to get a couple of hours of kip. And how dementia/ Alzheimers interacts with all that. The staff do an amazing job.
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They're absolute heroes.
 


T

timbha

Well-known member
Jul 5, 2003
10,670
Sussex
BrightonCottager said:
I've been in RSCH A&E for the best part of 24 hours now with my mum who fell over at her care home.

This isn't very nice but we all need to be prepared for the Do Not Resuscitate conversation with the hospital doctors and the general war zone that is Brighton A&E (3 or 4 beds to a cubicle, beds in the corridor, security and police), seeing your loved one in distress and pain, the sights, sounds and smells, the guilt of walking away to get a couple of hours of kip. And how dementia/ Alzheimers interacts with all that. The staff do an amazing job.
Click to expand...
Don’t let anyone tell you the NHS is broken. It’s not. It does a fantastic job. It’s just over stretched.
 


B

Brian Fantana

Well-known member
Oct 8, 2006
7,669
In the field
BrightonCottager said:
I've been in RSCH A&E for the best part of 24 hours now with my mum who fell over at her care home.

This isn't very nice but we all need to be prepared for the Do Not Resuscitate conversation with the hospital doctors and the general war zone that is Brighton A&E (3 or 4 beds to a cubicle, beds in the corridor, security and police), seeing your loved one in distress and pain, the sights, sounds and smells, the guilt of walking away to get a couple of hours of kip. And how dementia/ Alzheimers interacts with all that. The staff do an amazing job.
Click to expand...
My grandmother is in her 90s and had a fall at her flat, which resulted in her spending pretty much 24 hours on a trolley in a corridor of the RSCH. The impact on her was that she has since then preferred to stay bedbound to avoid another fall, and the subsequent visit to RSCH, despite her actually being in a strong enough physical condition to be mobile.

I have to say that it might sound controversial, but the experience and general level of care she received at that hospital was unbelievably poor. Enough to actually make someone decide they'd rather not get out of bed ever again than face the prospect of going back. Awful place.
 




S

Since1982

Well-known member
Sep 30, 2006
1,659
Burgess Hill
A slight aside given the mention of A&E and the traumatic experience it can all too often be. This morning I tried to use my GP surgery's new online booking system for what I sense is a minor issue but I've got health issues so it might be a bit more. After asking numerous questions it concluded I needed to go straight to A&E. I absolutely do not need to do that but then had to confirm two further times that I was ignoring the advice on the system. What hope does A&E have when GPs are pushing people there totally unnecessarily.
 


Cheshire Cat

Cheshire Cat

The most curious thing..
Nov 4, 2006
11,980
Sitting on a bough of a tree a few yards off...
Bozza said:
. 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.
Click to expand...
No, it isn't at all selfish. You have to look after yourself first, as you would be no use at all to your Mum or anyone else if you keeled over with something.

One of the problems with being a carer is not being selfish enough, and becoming ill yourself (mentally and physically) as a result of trying to do everything all the time 24/7.

You will feel crap regardless whatever you do, so don't beat yourself up more than necessary.
 


sparkie

sparkie

Well-known member
Jul 17, 2003
13,389
Hove
BrightonCottager said:
I've been in RSCH A&E for the best part of 24 hours now with my mum who fell over at her care home.

This isn't very nice but we all need to be prepared for the Do Not Resuscitate conversation with the hospital doctors and the general war zone that is Brighton A&E (3 or 4 beds to a cubicle, beds in the corridor, security and police), seeing your loved one in distress and pain, the sights, sounds and smells, the guilt of walking away to get a couple of hours of kip. And how dementia/ Alzheimers interacts with all that. The staff do an amazing job.
Click to expand...
RSCH A&E was like a circle of hell when I was admitted there last year. I had 2 nights on a trolley in a corridor before they found a proper bed in another ward.

Absolutely grim place. The staff were wonderful but it needs to be trebled in size.
 
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sparkie

sparkie

Well-known member
Jul 17, 2003
13,389
Hove
Since1982 said:
A slight aside given the mention of A&E and the traumatic experience it can all too often be. This morning I tried to use my GP surgery's new online booking system for what I sense is a minor issue but I've got health issues so it might be a bit more. After asking numerous questions it concluded I needed to go straight to A&E. I absolutely do not need to do that but then had to confirm two further times that I was ignoring the advice on the system. What hope does A&E have when GPs are pushing people there totally unnecessarily.
Click to expand...
There are 2 parts to A&E. The walk in, sit on a chair and wait for 6 hours bit which is actually the better of the two experiences.

If you are admitted or come in on an ambulance trolley then you get the real horror show.
 




BrightonCottager

BrightonCottager

Well-known member
Sep 30, 2013
2,932
Brighton
Cheshire Cat said:
No, it isn't at all selfish. You have to look after yourself first, as you would be no use at all to your Mum or anyone else if you keeled over with something.

One of the problems with being a carer is not being selfish enough, and becoming ill yourself (mentally and physically) as a result of trying to do everything all the time 24/7.

You will feel crap regardless whatever you do, so don't beat yourself up more than necessary.
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This is what happened to me last March. It's very easy to fall into the trap, especially (but not exclusively) if you have no siblings. Please DM me @Bozza if you want any advice about the things I suggested.
 


portlock seagull

portlock seagull

Well-known member
Jul 28, 2003
18,166
@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.
 


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