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I am a carer. What if I die? -Carers UK Forum

I am a carer. What if I die?

Share information, support and advice on all aspects of caring.
My wife has Secondary Progressive MS. She can move her head slightly, her right arm slightly and her right thumb. Nothing else works.
We have carers for personal care/repositioning several times a day but outside of that I do everything needed.
We have a mortgage. I work full time from home.

It struck me this morning - and I've no idea why it took so long - that if I die my wife will
- have to go into permanent care
- will lose the house
- will lose the pets we have
- will lose everything I have set up for her (voice control stuff)

She already hates respite care because of the lack of control, noise etc so we don't use it.

But if I die before her she'll not only have to deal with that but also the total change in her life.

Our 2 children have grown and flown. They have their own life.

How on earth do I start to address this?
In short , and unless one has the resources to dictate otherwise , it is a hypothetical situation you can do nothing about.

A situation many parent carers worry about when caring for their sons and / or daughters ... even grandsons and granddaughters.

Take away the carer and what happens to the caree ... especially if a lone carer ?

Local case my mother came across ... 83 year old blind mother , 57 year old son in a wheelchair ... protocooperation , each caring for the other as if just one ... no outside help ... should either die ... ?

One thought which constantly nagged at me during my ten year stretch.

The stuff of nightmares for far too many.

In the absence of the carer , the System will have to take on it's prime responsibility ... protecting it's most vunerable citizens.

Just how it does that is open to several interpretations.

To make matters worse , some illnesses are treated free under the NHS , others not so ... demned " Social care " and not free !

No easy answer beyond speculation ... with the odds shorter on some options in a small field,
I would start by visiting a solicitor - it sounds as if your wife needs some kind of 'guardian' in the event of your premature death, and I'm sure this is something that is a 'well trodden path' alas (eg, for parent-carers of adult-caree children, who are, indeed, more likely to predecease their children)

Also, you need a solicitor to draw up a will that reflects this possibility, and how best to protect your wife in that event as well.

It's the most dreadful thought, I do know, and 'of course' one sort of 'assumes' that your poor wife is most likely to predecease you, but yes, car accidents happen every day etc, horrifyingly.

You say your children have flown the nest, but of course they are the most obvious ones to 'appoint' as your wife's 'guardian' and to at least manage her finances if nothing else (can they be trusted to do that?)

I would think, though, that your wife needs an 'independent advocate' of some sorts, to ensure she is at least adequately looked after.

Ghastly though it is, why not check out care homes that could 'take her on' in that horrific event, so that you feel you have made some provision for her, and that could go into your will, her 'guardianship' so that you and she have some say in where she would go.

Who is the current executor of yur current will? I'm assuming your children, but maybe not so?
If you give you children part of your house now, then Social Services won't be able to sell it to pay for your wife's care, but in any case she should already be receiving NHS Continuing Healthcare, in which case she would keep the house anyhow, as the NHS pay for it all. So have you applied for CHC?

Main thread ... all under one roof :

https://www.carersuk.org/forum/support- ... inks-32532
If your wife qualifies for CHC they can pay carers, or YOU to care for your wife at home. This would take a lot of pressur off you.
Thank you all for your advice - it is very much appreciated.

I do not have a will. I will start the process to get one on Tuesday.

Having talked with my wife I will ask my sister-in-law to be executor.

I will explore guardianship / advocate.

I will also explore how to assign part ownership of the house to our daughters.

My wife gets 100% CHC funding.

The thought of a care home fills her with dread. We have tried 3 when she has gone in for respite care before. She hated them all. We do not now use any respite care. She would rather die than go into one.
How much care are CHC actually providing?
My wife has 6 calls a day. It used to be 4 but pressure sores....

The first is about 7am, then 10am, 1pm, 4pm, 7pm and 10pm.

The call times vary slightly depending on their other calls but that's what the agency agreed to provide.
I recall friends of my parents setting up a trust fund for their daughter (brain damaged at birth) to ensure that she would be well cared for in the event of them passing away before she did - perhaps you could look into something similar for your wife ?