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.

Ask for a new care assessment given his deterioration and the new baby. Might you qualify for legal aid? If so, you may be able to challenge any refusal to reassess or to increase the care package.

@WellThisIsShit, I'm a nurse and have MS myself.

Maybe I was wrong in suggestions residential care. (Though I wasn't the only person, to suggest it) the op cannot continue s she is doing now.

Progressive ms is awful and I feel for you. My dad died from complications related to it, he died with 6 years of his diagnosis as he developed pneumonia and his body was too weK to fight it. You can get respite if you do need to have a small break from it all. He will have good days and awful days.

In the nicest possible way please get his affairs in order, my dad’s illness began to attack his brain and he was actually crazy. Seeing things, wanting to buy farms? He asked ‘who’s kids are these?’ And they were his grandchildren. Get wills up to date and get power of attorney over all his care and legal affairs as you will need to be the person to push for everything. My apologies if it sounds alarmist but my family have been there.

Do you have a carers association nearby? Our local one is run by the princess royal trust and we’re able to get my mum support and a place where she could actually escape and have a cup of tea and a chat when she was stressed.

We looked after DFil when he was immobile, doubly incontinent and needed thickened liquids after a stroke. We got carers coming in 4 times a day and it was still hard.

I think you need to get all your evidence together and push as hard as you can for more help. Hopefully there are disabled and carers rights organisations that can help you with that.

OP this must be very tough. I looked after DP alone last year when he was very ill and had just come out of hospital. It was so tough, and I knew he would probably get better.
I would contact the MS association and ask them if you can get any further help. I know sometimes people with no experience of caring think there is more help out there than actually available, but they will know if it is a possibility.
I am sorry to say this, but if he is estimated to have less than 6 months to live, that can bring increased support and care. Every area is different, but he would then need to be put on the end of life pathway.
But most of all, you need support. MS run a helpline. I would ring them.
Also if you can afford to pay for any extra support, maybe a cleaner, I would do it.

I used to be a carer OP and I'd say you're coming close to the point where you aren't going to manage alone at home for much longer. Do you have a social worker? If you don't, I'd phone your local SS adult helpdesk and get them to do an assessment for you and/or go to your GP. I'm not saying this to kick you while you're down, but the fact he's getting hurt means that things aren't working and the fact he's at massive risk of choking would mean that he needs really close supervision that with all the will in the world, you can't give.

You're only human love, and there is only so much you can manage alone. I'm so sorry you're all going through this

Sending strength

Try to get some support as you’re important too!

Actually I forgot the MS society in my post. Invaluable helpful people, when my dad was in the very early stages and still mobile my mum and him wanted to go on holiday. She was actually refused insurance by 5 companies. I suggested seeing in theMS Society could help her find a company, the man she spoke too was disgusted as it was illegal discrimination not to offer insurance (even at a high cost). He took the names of all the companies she had called and spoke to each and every one to say they had broken the law....two called my mum to apologise and she got a decent quote.

These people might be able to give you helpful advice:

www.carersuk.org/

P.s. I am very sorry to hear about your situation. It sounds beyond tough.

Speak to your gp, so you can get support as a carer.
Make sure your getting all the right benefits especially since dhs condition has changed.
Get in touch with your ms nurse specialist if you have one they often know local organizations that can support you provide you with a grant.
Are / where you or your dh part of a union or maybe a professional you could get grants through these - lamplight is the charity of the RCN you don't have to have been in their union just a nurse. Other profession's will have similar.
Ask go to refer to district nurse for advice / assistance if not already. They may be able for instance be in a position to instigate a bowel regime.
Ask one of the professionals involved in care to so the continuing health care checklist as you may be entitled to some NHS funding to assist you with care.
Talk to the social worker can the children get support through a young carers organisation. Can they get you some free childcare to help you.
Do you need emotional support? Speak to your gp if you do.
Can you get respite care to help from time to time?
Charities /some NHS trusts can provide sitters who will support dh while you can go out / spend time with children / friends (if they've not all deserted you in your hour of need).
Is there any social day care dh could go to one day a week to give you a break?
Just keep pestering that's the only way you'll get support tell the professionals how your feeling, what you need support with they may surprise you with their creativity in a time of dwindling funds.
Best wishes.

Sorry to hear about your situation.

Do you have something like HomeStart near you? If so, could you approach them to help with the DC occasionally so you're not always having to juggle everything?

Apologies if that is a bad suggestion.

I work in adult Social Services & I would really ask for him to be reassessed for Care & Support Needs. Also do you receive a carers allowance? Sorry I've not read whole thread yet. X

Can you get some respite care? My dm (hadMS) used to go to a nursing home every few months (the same one she didn't like it , we needed it).

As an aside (but am important one) please let the teens' school know the severity of the situation. My school has groups and sometimes cash help to support young caters and your kids may well qualify.

It sounds extremely difficult for all of you.

So sorry to hear this, MS is a horrible disease. You need all the help you can get from the MS society, you also need more carers, it's too much for you to manage.

My H had it and died aged 67

Shouldn't your DH have an assessment for NHS funded care? I'm not sure of all the details, but I don't think the delivery of care needs to be in a residential setting for this. You rDH's GP or hospital consultant should be able to set this in motion, and clearly time is of the essence considering his rapid deterioration.