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Newbie looking for advice on ways forward elderly parents - Carers UK Forum

Newbie looking for advice on ways forward elderly parents

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Hi All,

-My parents are in late 70s / early 80s and live 3 hrs away. I work 3 days a week with a supportive wife and cat but no children.

-Mum has a degenerative Parkinsons like condition that is manageable at the moment with a bit of support with walking etc but she will require increasingly more support as this progresses. Mentally very sharp.

-Dad is physically able and able to support my Mum in their own house but starting to show some signs of mental decline and is starting to find it hard to make appropriate decisions. He finds it very hard to discuss plans for the future.

-They are able to cope at the moment but I would like to have some options in place for the future rather than having to respond suddenly to a crisis.

-My Dad would be very reluctant to move outside of his area and although my Mum would move nearer us quite happily, she wouldn`t want to leave him.

-I have registered for POA for Finance and Health for both of them. They have started a Social Care assessment with the help of Age Concern and an OT has made some modifications to the house.

- I am guessing that long term my Mum will require more support to stay in her own house and then need to go into a nursing home at some stage.

- Any one got any advice on what I should be doing at this stage. Their finances seem to be good and they own their own house in a desireable location. I will of course see what their wishes are but they would both find it easier to be presented with some simple options rather than a blank sheet of paper.

Many thanks - Costa
That's a big question.
Either they
have someone move in with them, move
into residential care
move into a smaller property nearer you
move in with you, with/without a granny annexe.
You move in with them.

However, the financial implications of all these are huge. I'd suggest doing everything to keep them in their own place as long as possible. This would be a good time to investigate services near their home, especially whether any care homes offer "day care". Make sure they also offer nursing care, as well as social care.
Selling their house would release money which SSD would then expect to be used to pay the full cost of residential or domiciliary care.
I forgot to ask if they live in a nice house you would like to inherit one day? If so, then also consider building a Granny Annexe at their place. If a member of the family is living in the home when someone moves into residential care, then the value of that house can be disregarded, under certain circumstances.
Sit down with your wife and have an honest discussion about how you want to spend your own retirement, and where. That's a good starting point. Then work through the options, with a piece of paper listing the pros and cons of each one. This should help narrow down where you start.
Be sure to take good legal and financial advice before doing anything. Carers UK also has a good advice line.
It's much better to make long term plans than end up in a crisis.
Forgot to ask if there are any other brothers and sisters?
I'd agree with BB's list of choices.

I think the bottom line is the choice you make has to be made 'for the long term' or with the long-term implications of the choice fully understood and accepted by all the family (siblings can complicate matters!)

There are, for those where property/assets/savings are possessed by the elderly, two broad choices:

(1) Try and conserve the parental estate so it can be inherited by the next generation (you/siblings)

(2) Giving up on the parental estate, and accepting it will 'go' in order to fund parental care.

If you choose (1), and for some this is their preferred choice, then you have to accept that you will 'pay' for your parents' care with your time and energy (and sometimes, alas, your sanity!).

If you choose (2), then you lose your inheritance (or stand to lose it!)

The difficulty in making the decision can rest, fundamentally, on the inability we all have to prognose our parents lifespans. That may sound a bit blunt, but it does boil down to that!

If you choose (1), caring for them yourselves, and you do so for, say, five years, and then they both die, then that might be described as an 'optimum' outcome - your parents have had their children care for them, they've died 'in the family' so to speak, and yet they've been able to leave their estates to their caring child.

But the elderly can live a long, long, LONG time (one forum member took on her 91 y/o mum - who is still going strong nearly ten years later). I really don't mean to sound 'horrible and mean and cruel' but.....however much we dearly, dearly love our parents, caring for them full time as their care needs increase with age, and we get older, and the retirement we'd thought we'd have gets used up in our parents' care, can be very very trying (this forum is FULL of such carers!)

However, if you choose (2), then you really do have to do so with the full acceptance that the estate will very likely disappear into care costs, should your parents not die 'soon'.

I've accepted this with my MIL, whose flat has been sold to pay for her residential care (dementia, and I am the only family in this country she has - I tried looking after her myself, and nearly had a nervous breakdown - it ATE my life, so, so, so sad). She is now 92, and her assets (flat sale and savings) will last, I reckon, about another five years. Then she'll be broke, and have to go on to council care. This is the brute, stark truth of 'living so long'. Horrible but there it is.

Conversely, my friend's father is living with her (she's divorced, empty nester), since his dementia developed. She is trying to conserve his estate (it was worth a lot more than my MIL's!), and doing so by having him live with her. She takes breaks by having a live-in carer come in for long weekends and a fortnight etc, so she can get away.

Siblings complicate matters, as it's either a question of sharing out the care, or NOT sharing out the estate! My friend is blunt about 'paying herself a care wage' out of her father's savings, because her sister has withdrawn her 'share' of caring - so should NOT get a full 50% of her father's estate (ie, the estate should be reduced by 'paying' my friend'.)

All of this can sound really brutal and horrible and venal, but ...... it all has to be sorted I would argue strongly 'before' any decisions are taken about 'what to do' now that your parents are in need of some form of care, whether it's provided by family carers, or professionals (residential care or 'coming in' care)

The danger is that one makes a decision on (1) or (2), without realising the implications. The choice may prove 'irreversible', so be prepared. For my friend, for example, she's now had her father with her for four years, and therefore says 'I'm damned if he goes into residential care now - £50k an annum in the Home Counties! - because it will eat up his estate and then what on earth will have been the point of me giving up these four years of my life to look after him???'

Many apologies if all this sounds so harsh and 'nasty', but it's better to face up to the difficulties that MAY lie ahead, and find ways of mitigating them.

Becoming old and frail, physically and mentally, becoming dependent on others (family or professionals) is very sad, and it does hurt to see our strong, capable parents 'decline'. We want to love them and keep them as happy as can be, for as long as they live - but we must understand the 'price' that that will inevitably cost. It's our time versus their money in the end. :(

Wishing you well, whatever choices you make, kind regards, Jenny

PS - of course, if they have no estate to conserve, it really doesn't matter which choice you make in that respect!
Hi Costa,
I would strongly recommend that you also get POAs for Health and Welfare if they are agreeable to that.

In my mother's circumstances that turned out to be one of my best moves. Almost every conversation with Doctors in the hospital was preceded by them asking if I had the H&W POA.

Other than that I would just echo what others have said. Don't rush the decision, think through every possibility and the consequences of every action and think of those consequences lasting for at least 10 years. I'm still at a loss to understand how my mother kept going for as long as she did, friends would often ask 'how can that body sustain life' but the resilience of the elderly has to be seen to be believed!

I wish you all the best and I hope whatever you decide works out well for you.
I'm in a similar situation to yours. In fact yours is the first post I've read since I joined a few weeks ago with parents that live some distance away.
I've had my parents living with me over the past 2 months as my mother became ill whilst staying with us. She is now waiting to hear if she is a candidate for an operation at a hospital near me. I just returned my parents back to their home yesterday to wait out this outcome with some support in place. We have one call from the local intake team( but they should be having three and I was told that we were lucky to even get the one due to lack of capacity). This might increase. In the meantime we have contacted a local care company that are also able to help but have to be paid for. Somehow they are supposed to be assessed with the care from SS but how that can happen from just one visit is unclear. They really won't be around for the times of the day when my parents need most help, especially meal preparation.
Going back to my parents staying with me, it worked well in many reacts but it's very stressful as I couldn't get away from the situation. I felt my home space was not our own. We too have considered and looked into the annexe in the garden. And in many respects this would work and we then would have funds for carers when if they were needed.However the more we think about this option we feel it's not right for them just yet. They have lived where they have all their lives and to uproot them at this time of their lives doesn't sit right with us. Also social care where they live is much cheaper. They too own their own home but it's not worth much and it wouldn't go far if both went into care. As a family we have two options. Sheltered housing( which we feel is best for them) or staying put at home with support as long as 1 they can get a care package 2. Care has to be paid for. 3. I continue to support the best I can by travelling 3hrs each way and staying a couple nights a week. All exhausting! Good luck with your parents, I'm entering the unknown with all of this, as a result I've lost a stone in two months. It's the not knowing is so unsettling.
Kim, sounds like your body is sending you a very clear message if you have lost a stone quickly. Do not ignore this. YOU do not have to pay for your parents care. Social Services MUST do a financial assessment before making any charges. If your parents have under £23,000 approx. then depending how much they have SSD can either fully or partially fund the care. However, they can also make alternative arrangements for that care. Start by asking for a Needs Assessment and a Carers Assessment, which when completed should be sent to you/your parents. Once you know what the resultant plan comes up with i.e. an hour of care per day then you know exactly where they stand on that front. Don't be fobbed off by the time carers will visit, etc., insist that they follow the process to the letter. I can't stress how important this is.
PS Has Attendance Allowance been claimed? Has the exemption to Council Tax on the grounds of "severe mental impairment" been claimed?
Good evening everyone. I am a newbie too so not being used to Forums I hope I am doing this the right way.

I am the generation of elderly or down right old parents. I understand the difficulties because we dealt with our own parents needs. Alas, it is needs rather than wants in most cases.

Trying to keep independent ourselves, we moved into sheltered housing and stayed for about 10 years. We were involved with the managing agent over issues to get the best deal with the yearly budget. It was a steep learning curve.
So what I want to say is sheltered housing can work really well but not quite in the way when we first moved in 2000

Since a EU working hours directive, a short while after we moved in, the warden became an office hour manager. This meant no one on duty, even in an emergency, at weekends or outside office hours during the week.
So choose wisely, there are extra care housing schemes but these can be very expensive.

The alarm was useful but one can buy into schemes for private dwellings.
One tip do not buy a new flat as the price is high to allow for risising prices while they are sold and fully occupied. Second hand are cheaper.

Get a solicitor who understands leasehold. There is a service charge that has to be paid whether the flat is occupied or not until it is re-sold.
Some final charges can be a percentage of of the selling price. Do not be put off, just warned.
Leasehold is different from owning the freehold, it is almost like buying the right to live there but not owning the building.
Some people were upset at so many restrictions. Permissions had to be sort for so much and a fee paid for putting new kitchens etc.

Many schemes expect the manager to look after the building, act as a neighbour but no more.
Some, if not all, cannot handle money or collect prescriptions. Some good managers do but they are breaking the rules.
We had some lovely managers but some came because of the flat. Others broke the rules to care.

Some residents had packages but there was no one to monitor the hours so family involvement is essential. I found some walking away if the door was not opened promptly, I explained the lady took a long while to get out of chair. The carer should have known that.
We were good neighbours to each other when able.

This may sound negative I hope not, some are wonderful places but much does rely on the other residents. One question to ask is can your parents fit in easily?
Some people can not as they are very private people. We had neighbours who did not mix but stayed in their flat, this worked but they needed good input from family.
Residents kept an eye on each other and most care was informal peer help. I would visit the flat bound and sometimes order food on line for them.

Sheltered housing can be such a good answer but, as I said, choose wisely. Sheltered can be a misnomer. Security is up to all residents, not letting strangers in etc.
It is best to move in while fit enough to meet, mix and build relationships.

So why are we not still there, a family member told us the adjoining small house was on the market and suggested we thought about a move. This is ideal, we have own front door do not see each other every day but help goes both ways. We feel very blessed.

I do wish you all the very best, I would hate to leave my little house and friends but I have to be realistic we do not know what to expect ahead so we all need to be adaptable.

Hope this helps a bit.
Alice, thank you. This is wonderful 'inside information' which may help many of us. I assume that you are not as young as ,reading your post, you sound. You must be one of those magical, wonderful people that have aged gracefully and with intellect fully intact. Someone we would all love to emulate. Lovely to 'meet you' and long may you continue.
All the very best to you and your husband