Preparing for the future - husband has health concerns.

margiknot I hope you husband has made a full recovery and like many many other people continue to live a rich and full life after heart surgery. It must have been a shock for you but concentrate now on both of you staying well for each other and your son. Best wishes.

Are you in contact with adult social care?
Maybe you need to think about supported living for him?
An "older" friend of mine has helped move her son into supported living after a health scare of her own. As she says - it is easier to do now than it would be in an emergency situation. She visited every day at first and still takes him out quite a bit but she now says how much he's blossomed since and that she wished she'd done it sooner.

It was very scary for her - she had lots of doubts and panics over it. Her husband was supportive of the move so at least they did this together.
I have to say, a few months "in" and she looked 15 years younger!

I'd say it's definitely worth thinking about.

In the course of my work I deal with quite a few older women and have come to the conclusion that thinking about old age and infirmity, not to mention bereavement is something that they think happens to other people.
It comes as a ‘surprise’ to many. Because of this I have made plans, unlike you Margiknot, I only have myself and DH to consider so it is much easier but I really think that giving the future some thought before the event is a very good idea.
Some people seem to this this is a bit pessimistic, even morbid, however I know that if the worst comes to the worst I feel it will be easier for me to cope and move on.
Supported living for your son sounds like a good idea. Better that things happen in a planned and organised way.

Hello Margiknot Yes it can be quite a shock when someone has always been fit and healthy and of course you have the added difficulties of caring for your Son too. I cannot offer a magic formula for coping with uncertainty and planning for the future. All we can do is take one day at a time and deal as best we can with what life throws at us. As others on here will testify you will manage in the future if you are alone. My best advice is to concentrate on the here and now and perhaps make some plans for little treats together. Don't be to hard on yourself and try and give yourself some me time too!

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.

Margiknot, I think you have come to the right place to begin with. Everyone has different ways of coping with health 'knock backs'. I think you should be quietly researching care for the future, and not necessarily involving your DH. If he says anything about it, say that you find it calming to do this research, and you won't be making any decisions yet.
You definitely need some specialist advice about future care for your son. Is there anyone involved in his care that you can ask? Even if you have little contact with adult social care, they have a duty of care to your son, and as NotSpaghetti says, will be able to discuss this with you.
I would also suggest looking at specialist charities and think about what is available. You can gather the information slowly and consider these ideas.
You can also slowly, start to look at 'future homes'. We are so lucky to have the Internet to help us with this. DH and I spent 5 years gathering information and looking at plots whilst thinking about building our house.
I hope that doing this will give you some useful thoughts, whilst not causing too much anxiety to your DH who may be quite unable to cope with them at the moment.
You also need to consider your health, but at least internet research needn't be too taxing.
I hope this helps.

Thank you. BigBertha, Judy and Pamela.
I'm finding it quite hard to not worry about the future. I will try to live more in the present. There are things my husband has always dealt ( he does a lot of the practical maintenance himself) eg the telephone number of the chimney sweep or how to reset the electrics etc) so I have started to quietly make lists- of where to find thins or which switch does what.

Allegretto, thanks for those ideas, There is a Camphill community quite near us which I looked at years ago ( when son was a child and my health took a turn for the worse). We do have some involvement Nannarose in our sons care form adult services, so they are aware of his possible future needs. He is a bit of an in-between as far as his needs are concerned, so support is limited. I will quietly restart researching what is available. I suppose I had assumed we would have longer to plan and look around.

Margiknot, your current plans sound very sensible to me, and you should be well prepared for the future. Good luck, and look after yourself!

I second Camphill. I visited and stayed at one of their places in relation to my work with adults with autism and also learning disabilities. If I ever had a family member with those difficulties I wouldn't hesitate to encourage them to move there. They are expensive and local authorities often try to avoid paying their fees. Persevere.
Good luck with it all though. Sounds like you have a lot to handle.

This comes to us all at some point and your right to think ahead. As my dear sister says «prepare for the worst and hope for the best»!
I would definitely get son sorted out with supported independent living -folks I know who have sorted it out are delighted with it-all the best!

My DH was a bit like this until he had a health scare about 6 weeks ago and could not drive. We only have the two of us to think about.Our DD lives hundreds of miles away
I would make provision for your son as others have suggested and then sit down and really talk about what a future home might be for you both.
Quite a few relations of mine have moved into bungalows nearer towns. We live in the sticks no shops and realise we will at some point have to move into a property near shops Dr's etc,
Or even special accommodation for elderly people. It has taken me a while to get DH to see this and that our present house has to be kept up-to-date and ready for selling as soon as we can if and when we have do so.
Good luck and I hope you find a compromise that suits you all.

It can be a shock when you are faced with a future that looks different from the one inside your head.

Bear in mind that your husband is probably right when he says he’s been “fixed” and is probably less at risk now than he was before. I have had several relatives who have had heart surgery and they all had a better heart afterwards.

However,planning for the future is always wise. Ask him to involve you fully in the running of the house, the finances etc so that you are not left floundering if anything happens. Likewise make sure he knows about everything that you usually do. Some men don’t even realise they need to wash the sheets more than once a year!?

I would second those who have suggested supported living for your son, especially Camphill, who are wonderful. If that seems too big a leap then consider daycare , where independence skills are taught but there is the security f coming home at night. A kind of halfway house. Also supported holidays to give a move into more independence.
It’s wise to get our children into reality song that we won’t always be a part of their lives and that they can not just manage without us but have a full life of their own.

You’ve had a life changing event and it will take some time to adjust. I wish you all a longer ng and happy life?

Sorry . Autocorrect again.

Reality song?

Realising

Please start to plan your son’s future care. A friend decided that as soon as they came back from holiday they would start such plans but sadly he didn’t come home so his wife was left with everything very suddenly. Get planning! And good luck.

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!

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.

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.

Message withdrawn at poster's request.

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

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

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.

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

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.

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.