I'm scared DH won't make 50 (he's 43)

[littlemissmoomoo]

My DH has SPMS. He is deteriorating quicker than we hoped. He was diagnosed 7 years ago. When we met 5 years ago he was able to walk short distances. He is now completely wheelchair bound, can't get himself in and out of bed and needs help to shower. Over the past 7ish months, he has deterioated rapidly. He now can't have liquids without thickener put in as he chokes, food needs to be cut up into small pieces to prevent choking, he is losing control of his bowels more and more. He used to be able to get around in a self-propelled wheelchair but his arms/hands are now too weak and he's now got an electric wheelchair.

He already has carers for one hour in the morning to get him out of bed and to shower him and then 30 minutes at night to put him back to bed. The rest of the time, I help him. However I'm 3 weeks post c-section and the past 3 weeks have been hell as I've struggled so much with helping him. Wednesday evening his carers were running late due to a car accident in the local area, so I said don't worry I'll get him into bed. BIG mistake - he slipped and ended up falling onto the floor and was in hospital until this afternoon with concussion.

I/we have six kids (4 are mine and we have a 2 year old and newborn together). Two year old was planned, newborn was not. Honestly, if I'd known how much he would deteriorate over the last few months, I'd never have carried on with pregnancy #6.

Don't know why I'm even posting this. It's middle of the night, newborn woke up for a feed, I put him back to sleep, got myself into bed and was just falling asleep when DH called out because he's soiled himself and I had to go change him.

Bless you, have no advice but can't be easy. Be strong.

Would you be able to get more visits or longer ones from the carers?
You're doing almost everything, and it must be too much at the moment?

Cassort, don't be a fuckwit. Don't kick someone when they are down.

Littlemiss, I've no advice really. Just a hug. Is your local hospice involved with his care?

There’s absolutely no need for that Cassort.

OP, sounds tough. Life with a newborn is hard anyway.

@Cassort how unsympathetic and unhelpful. Really don’t understand people like you.

I don’t disagree with cassort We sometimes make situations worse for ourselves..

littlemissmoonoo
Can you access any more help than a hour in the morning and evening?
I watched my Mam care for my disabled father it left her very sick in the end

Oh OP, poor you. Could you get more carers? You have enough on your plate with a newborn and 5 other kids.

Cassort has a very valid point.

I agree with the suggestions of more hours from the carers, OP.

Social services will only pay out for 1.5 hours per day unless we pay, which we can't afford.

@Cassort The average life expectency of someone with MS is around 7 years less than the average person so nowadays he should in theory make it to 70 years old. However, as I said, he seems to be deteriorating quicker than expected. I also said #6 was not planned and I would not have carried on with the pregnancy had I known he would deteriorate so rapidly in the past few months.

My eldest 2 kids are 15 and 13 so are able to help out a lot with the other children (9, 7, 2 and newborn) whilst I help DH so I'm lucky in that respect but I hate having to rely on them.

Sounds like he needs much more care than you can offer him OP. Thickened fluids, modified diet,immobility, incontinence are all issues together that suggest residential care is pretty imminent or at the very least much more care hours at home. Can you get him assessed for more support?

Such a hard life - I'm a carer for my DH, and mine seems a doddle in comparison.

Do you have any family members to help you, or at least give you a bit of moral support?

Honestly, if I'd known how much he would deteriorate over the last few months, I'd never have carried on with pregnancy #6. Don't ever tell your child this, or your DH.

You obviously need more help, whether it's carers for your DH, childcare or just help with housework. In your position I would try looking for a list of charities which deal with people in situations like yours and asking them all for a grant. I don't suppose you or your DH are ex-Forces, or ex-Police or similar? They tend to look after their own very well.

www.disability-grants.org/

I'm amazed that social services didn't increase the care package when you were pregnant, and particularly because you had a C section. I agree with A PP who said that it's more than you can do alone now. And awful as it seems, residential care needs to be looked st. You can't carry on as you are. The children need you as well. And you can't pour from an empty glass.

flamedtoacrisp I’m sure she won’t tell her dc that ffs

Sometimes some things don't need to be voiced or scribed.
Anyway op there are no certainties when it comes to health conditions. Decline is to do with many things. You just need support and he needs an increased level of care. Can you speak to your GP?

Are social services aware of your c section OP?

“And awful as it seems, residential care needs to be looked st”

Not in any way.

A slight increase in carers certainly, but removing an adult from society, their life, their family and their home and shutting them away into a full time residential facility is a horrifying suggestion. Not to mention an extremely expensive and unrealistic option.

Sorry to come down hard on a suggestion probably made out of helpful ignorance, but as someone who has a life changing and life limiting illness myself, I find it terrifying how eagerly people want to rip away the basic human rights of disabled / seriously ill people and get us out of of the way as neatly and conveniently as possible. I’ve been threatened with being ‘put in a home’ and my son being put in a foster home before. That would be an old people’s home by the way, as there aren’t many ‘disabled but completely independent of mind’ facilities around.

It’s fucking terrifying and should only ever be an absolute last option for all concerned.

He doesn’t even sound like he needs enough nursing type care to come under NHS continuing care yet. Tthough OP, have a look as that’s an alternative funding source with different thresholds.

What an awful situation for you both. I can only suggest seeing if you can increase the care package as its not reasonable to expect you to do this, particularly 3 weeks post C Section.

Don’t see your issue with cassort
yummyopalfruit
Personally if I knew my dp had ms I’d be going out of my way to not have more children

Wellthisisshit I don’t think it is a horrifying suggestion at all. I was the child in this situation. It was a fucking shit childhood. Doesn’t everyone want the best for their children?

But the children are here, so it's pointless making the comment. The OP is posting because she's scared her husband is going to die. How many of us have had to genuinely face the fear that our husband won't make 50?

God that sounds tough. I was terminally ill DPs carer and he wasn't as disabled as your DH so of you're feeling like it's really difficult, that's because it is. You're in an almost impossible situation.

The person who said residential care wouldn't be an option is wrong. Your husband is in an electric wheelchair, losing strength in his arms, needs a modified diet, incontinent, and has a deteriorating condition. You would have to fight for it, and it would be an old people's home, but the option is there. You would have to lay out to SS thst you cannot cope at home any more, and you would have to be very clear. More support at home is also an option (actually probably essential).

Don't dress up a good day to be an average day. In fact it can be helpful to make a diary of everything you do over the course of a week. Give this to SS, make it clear that you are doing this with a newborn baby, a toddler, and older-but-still-little children. You have to make clear the concerns you have for his safety, your safety, the safety of the children. You can't watch the children while you're changing your husband, if he falls you can't help him get back up because that's putting you at risk.

You will get more help, but you might have to fight for it.

In terms of the fall the other day it sounds like he might need an assessment for some form of hoist (like a stand aid rather than a full hoist).

Can you see your gp and/or get a re-assessment on the social side? Your circumstances have changed (medical change in him and newborn for you) so you should have a re-assessment as your need has increased.

Does your DH have a neurology consultant and specialist nurse for the MS? Perhaps also go for a neurology consultation as they can help point you in the direction of how to get more appropriate care.