Preparing for the future - husband has health concerns.

Agree with Camphill - visited there in my LD training days many moons ago but it was very good then so am assuming they are really good now ... I do think it is time for you to help your son move into more independent/supported living now, rather than when it could potentially become a crisis move, which wouldn't be good for him or you .... have some friends with a daughter who is a young woman, and they won't let her do anything much at all when she would be perfectly capable (she works at Tesco!) and I fear her sister will be left to it when the time comes which really isn't fair at all.

grannybuy That is awful that the Council did that - so what happens then when there is a crisis moment with you or your husband? That is so, so unfair on your son who may end up having to deal with so much change that he may not understand. I am sure that the LA must have a Duty of Care and I would start approaching them again so that there is a plan in place to move him into supported living (obviously I have no idea how old you are and your health issues if any?)

Sorry, I missed the last few posts, and have just seen that I’ve almost repeated the previous post!

I’m also in the position of having an adult son with learning difficulties still at home, though much older than your son. I agree with all, that Camphill is worth considering. We get no support whatsoever from the council, as they are short of money, but I went down the Camphill route myself, which included visits and interviews, and a week’s trial, after which his name was on the waiting list. However, when he was finally offered a place, the council wouldn’t fund it. I’m not sure at what age a power of attorney kicks in, but that’s something to consider. Also, if he doesn’t already have it, I would try to get occasional respite, as it’s a good stepping stone to supported accommodation. Trying to teach him some life skills, as you’re doing, is also very wise.

In my opinion everyone should plan for the future as soon as they get married. Sadly from my own experience I now realise you never know when something unforeseen happens. I highly recommend you each do a Power of Attorney, make a contingency plan, a will, a "what if" plan which is different to a. contingency plan. write down your future wishes which can be part of your power of attorney Health and wellbeing part, but can also be done separately. The finance part is completely separate.
You should have provisions in place for your son's care and perhaps introduce him gradually to some regular respite at a place which would eventually be suitable as a permanent placement, this will enable him to slowly getting used to their routine and surroundings. I have not read any of the other posts only yours so don't know what others have suggested. sorry if I am duplicating the suggestions.
I wish you all well and hope your husband is right about his full recovery. ?

My lovely husband had been married before to a lady he loved very much but knew she had heart problems so he became a widower at the age of 28. Having had to cope with all these things at a very early age, he was very aware of what can happen. So we had a couple of things that we did. I always say I have champagne taste and beer money, so we had a house book. This was simply an exercise book which each room had its own chapter. We put things like, how many rolls of wallpaper needed, where the wiring was up or down to plugs or pipes under the floorboards, a note of any jobs we had had done in the room and the phone and adds of people like electricians and plumbers who we had used before or had been recommended etc. So I would have a look in the book to see how much wallpaper was needed and then go off to the sales .We had curtain measurements so I would be in the charity shop or the sales with all these measurements to hand. I know you can put it all on the phone now but a book is still very useful and can be kept safely at home. We also had a cheap diary of things like when MOTs were due and insurance etc. Put a warning note about 3 weeks ahead of due date gives you a chance to do some research. All this sort of stuff was just the practical stuff ,but you may find your husband would be happy to think of it as a house book for reference rather than seeing it as expecting him to be ill or unable to do things.It can be a real hassle when you cant find the one screwdriver that works for something . I found it calming to have this, so that I could check things for myself, and have things like plumbers phone numbers to hand . Should he become ill it will be a comfort for you to have all the information and take at least a little bit of worry from your back. I used to do ambulance car service and have seen many people for whatever reason unable to drive or get about and suddenly have to move. So although I was sad to do so I moved to a ground floor flat , as at least I had some choice in the matter and hopefully will be able to live here for quite a long time. I do hope things improve for you and after a little while you may both feel a bit calmer after such a difficult time. Wish you good luck

See Lifebook - www.ageuk.org.uk/information-advice/money-legal/end-of-life-planning/lifebook/ which stores all the information you may need.

If you can persuade him to help fill it in you will be more able to cope in the event of any future problems.

Katy 50. I am sorry about your husbands ill health and it’s effect on you. However I am not sure how your post helps the OP and I can assure you that there are not endless handouts to people affected by ill health. I am a carer for my disabled brother who worked for over 40 years and had to fight for the PIP to enable him to get some limited help with care.

Margiknot — this could be me ! Thank you for posting your comments.
My daughter is 26,sp needs , still with us. I worry all the time
Yes Camphill is a good start. Good luck ?

This thread has come at a time when I am experiencing the same thoughts, until recently my DH has done a fair bit of maintenance inside & outside the house, although he has agreed to a gardener to cut back our hedges. I manage the day to day cleaning, cooking etc so we make a good team. But he has recently sprained his right wrist and also his arthritis is playing up making him slightly lose his mobility. I don't think it'll be permanent, but what I'm saying is that it has made me realize that we are not going to sail along forever and change is something that I have to think about.

I have health problems as well, and all of a sudden I'm thinking about the future when possibly I will be on my own, and with family a long way away, its fills me with dread, as I am sure it does DH.

But it has to happen one day and its best to think about it, rather than just pretend it may not happen. Not too sure about this old age thing!!

Living in the present is all very well and good, but if you are anything like me, Margiknot, if you do so to the extent of not considering the future, your peace of mind will suffer.

You and your DH have had a nasty shock and need time to get over it, so the advice not to do anything too hastily is sound, as is the advice to look quietly into things on your own.

It entirely depends on your financial situation whether an old house that needs a lot of maintenance is a feasible proposition. It is if you can afford to pay for the work that has to be done and to heat the place properly, but if you cannot afford help and your DH has formerly done the work, then obviously it is a completely different affair.

If you have not already done so, make or revise your will.
Discuss with a solicitor, chartered accountant or your bank how you will stand financially if your husband predeceases you, and how he will stand if you predecease him, plus what your son's situation will be financially in either circumstance.

It is not morbid to plan for the future, although none of us like doing so, when the future we are talking about is widowhood!

Will your son need a guardian, when you and your husband are no longer able to deal with his affairs?

It may seem hard-hearted to move your son into care now, but it might well be the best possible thing for him, and it would give you a realistic chance of moving to a smaller, easilier kept property.

I too am facing the propect of a husband being frailer than we had envisaged six years ago when we bought our present house and what we can or should do about this.

Obviously, neither you nor I would dream of making it too obvious that we sometimes wonder if widowhood is to be our fate. The longer our husbands are convinced that they can and will regain their former health the better, but to me that does not mean we should totally ignore the little voice in the back of our minds that says, "How will you manage if...?

I have found the best way to shut that sneaky little voice up, is to make a few contingency plans, so I know I could perhaps do A, B or C if it becomes necessary.

I have no experience in providing care for an adult who cannot care for himself, but please do get professional advice about this.

One thing, I will permit myself to say is this: change is always difficult whenever it comes. It just might be better to move your son into a permanent assisted living facility now, rather than later.

So sorry to hear about your husband, Margiknot. I thought that you might find my husband's experience gives you optimistic thoughts. My husband had a quadruple heart bypass when he was 50 - family history of this - but we hadn't realised anything was wrong and had booked a ski holiday, which we had to cancel. He seemed physically fit and active, had never smoked, wasn't overweight, but just had the wrong parents, health-wise. The heart bypass failed, and he was given stents which we were told would last 'about 9 years'. He took early retirement to become a full time 'househusband', and I was lucky to change my part-time job to full time to support our family. Nearly 25 years later, age 75 next birthday, my husband is still doing really well - he knows his limitations, but this hasn't stopped us from living life to the full, moving house/area, travelling long haul on many occasions and generally getting on with life. He walks for about 50 minutes every day and we eat a healthy diet (which we always have done). Just looking on line to see where we can go - somewhere warm - for his 75th birthday next February. So don't give up on the health front - stay positive and don't feel obliged to do anything that you don't feel is right for you. Uncertainty is just part of living, I think. Good luck with whatever you decide, but heart surgery these days can be quite amazing with very positive results.

With numerous chronic, progressive, and life shortening illnesses, some from the mid 70s, taking one day at a time is my mantra.

I am a great believer in look to the future and prepare as best you can. When you have other people who are dependant on you , it is much easier to prepare for your loved ones future needs while there is time now. Think especially about your son's needs and your own future housing needs, I have found its much easier to have a home on one floor only, ( no stairs) and bathrooms on the ground level with shower. It may save you having to go to a nursing home because you or your loved ones can't manage stairs.

My big strong husband had a heart attack at the age of 38 we had three small children and a mortgage at 15% but we struggled through with no help from anyone or the government so when I listen to the news at the moment and see all the handout people get it makes me angry people nowadays won't stand on their own to feet. Sorry I'm ranting but I have to say the heart attack changed my feeling from comfortable to constant anxiety that has lasted 38 years

I worked with young adults with learning disabilities and mobility disabilities. Most were in the supported living homes, due to aging parents. The parents had Decided to do the live while they were still alive and also in good health. Meaning can visit and chose a suitable place, also they can get used to seeing parents less and become more independent.

My husband has heart problems too and was similarly dismissive of his "fixed" problems. However I think that underneath he is well aware that his life expectancy is reduced and he was willing to downsize from a large house to a flat, which we have now done. It has been a great weight off my mind.
We have a daughter with mental health issues but she lives independently in her own flat with a worker who comes in a couple of times a week to help her to do things that she can't manage alone.
I've not read all the posts I'm afraid, but is there no chance that your son could live independently, possibly in a community that will support him? Forgive me if this is tough to hear, but he will need to live somewhere else at some stage of his life, sad to say, and it might be better to settle him somewhere else sooner rather than later. Then you and your husband can sort out how you will live to make the most of your own lives.

And yes to those who are suggesting helping your son to move on to an adult home. At his stage, just leaving college, he can see it as part of the normal growing up that his peers in college do- getting their own flat and parents helping him to settle, coming “home” for a meal, an outing, and getting the washing done for you!! and having mum and dad visiting.
So much easier and far less traumatic all around than a rushed move during a crisis when everyone is making decisions quickly under stress.

Martin Lewis's email has an interesting post today , about making wills and having " the conversation' about later life planning and wills

Have a look at Martin Lewis “unpleasant issues chat”
www.moneysavingexpert.com/latesttip/?anchor=hiya&utm_source=MSE_Newsletter&utm_medium=email&utm_term=11-Oct-22-08a3943651446409695-6345d352b86c5032d6ca737b6ff262d8&source=CRM-MSETIP-08a3943651446409695&utm_campaign=nt-highlights&utm_content=1#hiya
It’s really helpful and a good starting place for all of us, especially if we’ve been in long term partnerships and roles have become polarised to our different skill sets.

It is not morbid as people think to prep for the future: no-one knows what's around the corner. Indeed the turn of 2020 New Year proves that and what we came to experience with the pandemic.

Mention to your husband what you are planning to do with research etc. If he moans on about it just continue with your course of action.

Being fit and health means nothing. An unexpected accident or the like happens everyday.

Planning for eventualities, even introducing more assistance etc makes sense.

I have a friend who has a learning disability son. They have got him into supported living gradually over the years so he is settled and used too it.

She sees him weekly there. At first she popped in daily. Now she is able to enjoy her later years more with freedoms she had forgot existed.

Its not been an easy transition as she was stuck in her comfort zone. Yet she will tell you it's been the right decision.

I can testify to not knowing what's around the corner as I unexpectedly lost my husband 4 and a half years ago at the age of 60.

We always think these things happen to someone else. That someone else we forget can be us

Allegretto

Margiknot, I’m sorry to hear that your husband was unwell, but glad that he’s feeling well again. We have an adult relative who lives in a Camphill community, where he works in the garden in the mornings, with supervision and help. He loves his home and his work and feels valued. His late parents arranged this to ensure that he was looked after when they were no longer able. Other “villagers” work on the farm or in the bakery, laundry or workshops…. Some don’t work and some work full time, each according to what is right for them. I know that the community is now offering non-residential places, which would work well as a starter. Camphill communities exist throughout the UK and in Europe too. I think they are wonderful. It might be something you would like to look at.

I would fully recommend Camp Hill Villages having worked in one in South Africa. They are so caring and inclusive.. your son would I'm sure flourish and you would always be a welcome visitor... good luck

Message withdrawn at poster's request.

Thank you all. I will look into supported living and camphill. Oddly long ago (when I was a child) I had a relative who worked for Camphill. Newquay you are right about preparing for the worst but hoping for the best ( a saying my mum used to use!) Its not long since I lost both my elderly parents - and their neatness in having lists (even an address book with comments like 'my cousin' or dads 'school friend') were helpful. I shall start trying to be more organised and neater. And thank you for the reminder to make sure DH can work my side of the chores too- we have tended very much to polarise our responsibilities.
Our son is still in education (entry level skills) at present but that will end soon.

We lived in an old cottage with a large garden or many years and DH wasn't ready to move until a health issue began. We have now moved to a nice bungalow with a manageable garden and a lot of stress has been lifted. His previous health issue has been resolved but he has now been diagnosed with Parkinsons so we are very happy that the upheaval of moving is behind us. It is better to move before it becomes urgent.

So good Margiknot that you are finding out about practical things in the house and what switch does what. When Mr J first became ill we put together a little manual on such things which I have found invaluable. It is not so much that I can undertake these tasks myself but knowing how things work, where they are and what they are for is really useful when calling our Plumber, Electrician etc at least it makes me look as though I know what I am talking about!