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Struggling in limbo - Page 7 - Carers UK Forum

Struggling in limbo

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74 posts
Hi Busybee, do NOT allow yourself to be bullied into selling the home, there is always the option of "Deferred Payments".
This is a very specialised area, and so many people including accountants and solicitors think they know all the rules, but talking to them it's soon apparent that actually, they don't.
I would suggest that you write down all dad's current symptoms, and then ring the Alzheimer's Society helpline, or the Parkinsons Society, and ask them "How long do you think dad will last"?
Maybe read Jenny's posts about the decline of her MIL who has recently passed away?
Write down all his income, and outgoiongs, and work out how long his money will last.
If he went into a home would you be able to go back to work?
It's SO difficult to 'predict' lifespan with dementia. A friend looking after her dad said she'd read the average lifespan after diagnosis was 6-8 years. Someone else heard from a care home manager that once they were in a care home they usually died within two years....

Even at my MIL's care home (she'd been in dementia care for close on four years), only this summer I was asking (always sounded SO brutal when I did!) -'er, how long left do you think in your experience?'.....they could only ever answer 'impossible to say'. Yet she did not see out October. And it was really only about a fortnight or so before she died that I started getting 'she's fading!' messages from the nursing staff. Only after that did I get the answer, when I asked 'Will she see Christmas', a definite (very definite!) 'no'. Yet even dying 'took a while', and although MIL took over two days (sorry, I know it's horrid horrid horrid to speak this way, and I wince myself even writing this), again, the staff told me that they had had residents who'd lasted weeks in that 'hovering between life and death' state......

It depends on SO many indeterminate factors in the end. The physical ailments (eg, do they have a weak heart as well as dementia, etc etc), how fast the dementia itself is progressing, how well, or not, they are still eating (ie, how much 'strength' they still have), and, perhaps most significant of all, how 'ready' are they to 'leave this world'. Some patients DO 'turn their faces to the wall' far more readily than others, some 'fight to the bitter end' (I think MIL did, in that only about ten or fifteen minutes before she slipped away did her breathing changed from 'determined' to 'gentle'.....)

In the end, it does seem to remain a profound mystery - how a living body ceases to live. It's an extraordinary 'strange' thing to witness, and 'strange' is the only 'emotionally neutral' word I can think of. It's like a tide 'ebbing' maybe.....the breath of life easing from the body? Who know? Except, of course, that one day WE will all know, ourselves....... and then, as Shakesepare says, 'and then the end is known'......
He is eating well at the moment but overeating a bit - a symptom. His mobility is OK with a walker or stick. Had to get antibiotics for him today as he has a chesty cold. Before he had the PD diagnosis the therapist at the rehab care suggested he should go to a care due to issues at night with the incontinence. The only thing I worry about him being at home is that he won't have enough mental and social stimulation. It's tough.
I would think it safe to say that in a care home he would get more mental and social stimulation - unless he insists on staying in his room all day? And eating in his room? The staff generally like to get all the residents into the lounge, for as long as possible - I guess it also makes it easier to keep an eye on them! But it means there is a sense of something always 'going on'....coming and going of staff, things 'happening'. And that has to be 'good' as far as mental and social stimulation is concerned.

A good care home will NOT leave them with the endless electronic nanny (the TV blaring in the corner). It will also have a daily programme of afternoon activities and even if they don't partake, again, it is something 'going on' in front of them.

A lot does depend on the personality of the resident of course, if they like, or don't like, being sociable.

What, however, is probably harder for the homes to provide is much 'one-on-one' time with the residents individually.
In the rehabilitation care home the staff were good at encouraging residents to come out of their rooms for dinner for protected meal times in the dining room and going in the TV lounge. Dad was ok about going in the communal areas and it did have daily activities. Still looking into other options such as Hometouch and Supercarers
With regard to life expectancy with Alzheimer's Disease, when my mother was diagnosed with that disease the consultant told us it would be 2 - 5 years. She died 5 years later. Of course, every one is different.

So much depends on the 'speed' of the disease (I believe 'true' Alzheimers is more predictable, the brain dies in a particular fashion, ie, in a particular 'order' of mental dysfunction - SO grim that the 'best' bit, our 'personality and cognitive higher self' dies FIRST instead of LAST - compared with vascular dementia which is a lot more 'random' (ie, depends where the blood supply in the brain is being interrupted etc etc)

However, maybe the 'speed' of Alzheimers is variable per patient?

And, on top of all of that, is the underlying other health problems the patient may have, the co-morbidities that might kill them first (eg, weak heart) etc.

It's all just incredibly depressing - first that anyone gets it at all (and we STILL don't really and definitively know why), and then that it is incurable and irreversible, and then that it doesn't kill 'fast', but reduces the wretched victim to a 'zombie' before it finally delivers the coup de grace and lets them go. Vicious, vicious, vicious.....like a vampire feeding on us until there is just nothing left more to feed on and we are 'emptied out'.....
Just an update. Dad much more settled this week not many problems with incontinence at night as he had in the rehab care home. Have have gas cooker safety locking valve fitted in kitchen. Have had a free consultation with an IFA who suggested moving his current ISA's to a stocks and shares ISA for a better return. That in addition to his capital and other income would fund home care for about 5 years. For care home fees was suggested that we could downsize to a smaller property that I could live in to release money from the house. Then invest that money with the ISA for a better return. Seeing another IFA next week.

At the moment the plan with Social Services is to increase the care calls to 5 or 6 hours a day for four days a week and a day centre once a week. NHS will be supplying incontinence stuff from next week. So much to sort out but getting through it.
Hi busybee
Definitely get second and third opinions!

At the moment, due to political uncertainty and general world economics, stock and share type investments are falling, not growing. They tend to be recommended for people with a long term timescale. A few months ago they were up and a few months before that down again. Imho they aren't suitable for very elderly, or those who need a certain income
My stocks and shares ISA is currently 10% lower than its value in July, and with NO upturn in sight yet.
Granted cash deposit rates are poor too, but they don't go backwards in large leaps.

Also, if Dad sells his house and buys somewhere smaller for you to live in while he goes into a Home the SS would likely see that as Deprivation of assets, especially if there was any chance of him spending his way through any capital released and then tries to get council to pay his fees.

I'm not sure this first IFA knows the ins and outs of care funding rules. See if your local careers support knows of anyone with relevant expertise. Ours pointed me to a good wills and trusts person for example.

Do take care
This IFA was from the SOLLA (society of later life advisers) website and said the downsizing would not come under deprivation of assets. I think the downsizing would have to be done before he went into a care home, which would be too stressful. Seeing another IFA next week.
74 posts