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Preparing for the future - husband has health concerns.

(41 Posts)
Margiknot Mon 10-Oct-22 14:59:20

HI. Im not sure where to put this!!

A few months ago my husband developed an unexpected health concern and needed urgent heart surgery. It was quite a shock for us both as he had always been healthy and very active. I thought I might loose him. I am mostly retired but my husband is younger - only in his early 60s and still working. We also care for our disabled young adult son- who most likely will always need at least supported living if we cannot provide it.
My husband has mostly recovered from his surgery and is slowly getting back to active life again.
I suppose the main shock for me -is realising my husband is frailer than I thought-( I suppose I'm still recovering from nearly losing him) and I may have to manage everything ( house, sons care) in the future alone. Dh on the other hand seems confident he is 'fixed' and back to normal- so at the moment he is not ready to consider ( at least with me) making provision for the future- after all he is still of working age. We need a safe home and space for our son, so downsizing at the moment is not possible but out present centuries old house requires lots of care and maintenance. We have no other DC or GC. I have several health issues which limit my energy,.
Obviously we are trying to improve our sons independence skills but at present our son is fairly dependant on us for most things- and needs close supervision for the things he can do himself. We work very much as a pair to care for our son, now he is older. He has limited understanding and does not cope well with any change.

I suppose I'm asking what has helped other people learn to cope with uncertainty and plan for the future?

Willow68 Wed 12-Oct-22 13:15:56

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.

katy1950 Wed 12-Oct-22 13:16:46

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

nipsmum Wed 12-Oct-22 13:17:33

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.

Larsonsmum Wed 12-Oct-22 13:19:41

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

Grannyjacq1 Wed 12-Oct-22 14:08:20

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.

grandtanteJE65 Wed 12-Oct-22 14:55:35

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.

Marg75 Wed 12-Oct-22 14:56:10

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!!

Labadi0747 Wed 12-Oct-22 15:17:03

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 ?

Happilyretired123 Wed 12-Oct-22 16:43:44

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.

LJP1 Wed 12-Oct-22 17:35:27

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.

madeleine45 Wed 12-Oct-22 18:48:01

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

win Wed 12-Oct-22 21:32:40

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. ?

grannybuy Wed 12-Oct-22 23:38:16

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.

grannybuy Wed 12-Oct-22 23:40:32

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

MadeInYorkshire Fri 14-Oct-22 13:14:36

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?)