Hi, I’m new here and feeling complete overwhelmed and somewhat clueless about what to do following a sudden decline in my husbands health and would appreciate some advice.
My husband was diagnosed with a rare neurodegenerative disease 3 years ago, right from the start his consultant made it clear that the symptoms he would develop and speed of the disease were unknown and unpredictable. My husband has memory and speech issues and cognitive decline but as our adult son lives at home one of us is generally at home 4/5 days per week and up until now both my son and I have continued to work.
Just before Christmas my husband had a fall, x-rays and tests showed no damage but he is now unable to walk, this is being linked to the disease and is irreversible. My husband is still in hospital and a care plan is being discussed, 2 carers 4 times a day but his consultant has suggested that he’s not left alone anymore. My husband still has the mental capacity to object to going into a care home and the only option therefore is for me to leave work, I don’t object to having to do this but stupidly it’s not something I’ve really given much thought to and I’ve probably sent the last 3 years with my head in the sand because although my husband receives PIP I have absolutely no idea what else we might be entitled to, where to go for help, what sort of assessments we should be having. Any advice would be welcome.
I’m not even sure why we’d need carers coming in if I give up work. Also, when my sister-in-law had carers, one morning they would arrive a 7am to get her up and the next day they wouldn’t arrive until nearly 11am, is this normal as I’m not sure if I can deal with that, I mean how do you plan anything? And my husbands sleep is really bad so I wouldn’t want carers getting him up really early is he’s been up halt the night.
@MrsM Welcome to the forum!
There’s a lot you’ll be facing right now so first of all I’m sending some hugs your way, and hope you’re not too overwhelmed or anxious. Take a deep breath! you’re not alone. This forum has lots of people with a variety of experiences. Checkout the Roll Call thread if for ‘Over the garden fence, everyday, neighbourly chats’ : https://forum.carersuk.org/t/roll-call-january-2025/126277?u=victoria_1806
I’d recommend calling the helpline to talk this all out with an expert who has experience about the assessments Needs, financial and info about the benefits - it will be easier this way as there’s a lot of info to navigate
Helpline and other support | Carers UK.
Please DO NOT cancel any carers if the care plan has been set up that’s great. Take it from me and many many many of us, you’ll need the support whether you’re working or not.
One BIG thing to investigate before he’s discharged home is setting up your house, bed, toileting/bathing process so it’s safe for you and him.
Now that he can’t walk there maybe several things around the home that will need to be adjusted, for a wheelchair to get around etc
In the care plan I think someone helps to assess the functionality, safety in your house - to add guardrails in bathrooms etc… @Charlesh47 @Sue24 @bowlingbun ???
Have a think about how the carers/you will help your husband to shower/wash safely. I’ve pulled muscles and had back pain when I was helping my Dad.
There have been cases where things are not coordinated/organised well.
I hope the hospital is keeping you informed and consulting you and your son about the care plan.
That’s already a lot of information, if you’re looking to read more info go here
Guides: Guides and tools | Carers UK
About me: I started helping my mum care for my Dad back in 2015, we cared for him at home he had many health issues including rheumatoid arthritis, cancer, vascular dementia and congestive heart failure. he passed in Jan 2020 and I care for Mum now.
I hope this helps, ask any questions, and feel free to share as much or as little as you feel comfortable with…we’ve heard it all!
Welcome to the forum. Please don’t give up work yet, there is so much to consider, before you do something you will regret forever.
Have you heard of NHS Continuing Healthcare? Free care either at home or in a care home. Ask Google for information, then ask the consultant to arrange an assessment.
Have you ever nursed someone who is unable to walk?
Has anyone even talked to you about how the care is going to be paid for?
I would suggest he needs to be transferred to a nursing home so you can learn more about what to do and how to do it, at very least.
How old are you both?
Is there an organisation dealing with his specific disability?
Please don’t make your son a carer, let him study, realise his dreams career, girl friends etc.
Sadly, your husband’s health is never going to get better, only worse, it’s going to be relentless. Has anyone suggested that he moves into a home near you so you see a lot of each other, but there are staff on duty 24/7?
@MrsM I have the echo BB frankly. What do you want? If you give up your job and your husband has to go into home, how will you survive financially?
Also do YOU want to give up your job? How long will the Carers be with your husband for?The rest of the day, I would guess 20 or 22 hours it will be left to YOU to cope. I would beg you to talk it through with the helpline. Care needs tend to increase not decrease. You mention your husband having ‘mental capacity’ and not being able to be forced into a Care Home but you cannot be forced to care even as his wife.
I am sorry to sound hard but it is so easy to be bullied and to sleep walk into being a carer.
@MrsM……hi, welcome to the forum. Please do not say no to the carers coming in. You will need all the help you can get. Unfortunately from my experience they do come at times that aren’t set. Normally they wouldn’t be with you too early as they assist people who need help with their meds first. We had carers coming in doubled up 4 times a day for my husband. They would generally come in around 10 in the morning, back at lunchtime, then early afternoon and then around 7pm but sometimes as late as 10pm.
Please think very carefully about whether you would want to/could manage with him at home. If you give up your job you will lose your independence and trust me it’s an awful lot to take on even with your son there. I appreciate a carehome may not be what he wants but it may be what he needs for the best?
My husband has had limited mobility for a number of years followed by a serious of medical incidents over the last 2 years where he nearly died. He is now in a care home as we couldn’t manage at home. I work full time and my elderly parents also live with me.
Hi, thanks for your reply. We are both 57 and our son is 31, he’s never moved out and has chosen to help with caring ( trust me we’ve discussed him moving out many times but he doesn’t want to and I don’t want to force him to go as that would just cause additional problems ). No I’ve never cared for anyone and feel as if I have no other choice because who is going to look after him when I’m not here? Also, I don’t know if I could manage to hold down a job and then also come home and look after my husband. I feel that the hospital just want to get rid of my husband as fast as they can. On top of that my husband has has begged me not to put him into a home, how do I therefore force him into this, surely I can’t refuse to let him come home to his own home? As you can probably tell I’m so confused and feel like I don’t have time to make informed decisions.
Morning @MrsM Have a chat with the helpline: For information and signposting, our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays).
talking with someone can help unpack things, with so much going on. xoxo
If this move back home is going to succeed then you need some training.
Too many times people have been kicked out of hospital too quickly and readmitted almost immediately. Hospitals make all sorts of promises but once another patient is admitted, nothing happens, you are on your own. This has happened to my mum and mum in law. I was promised all the aids I needed would be delivered the same day I was discharged after major surgery. They arrived 4 days later!