New life as a carer

All about caring
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Hello, I’m just about to take on being my husband’s full time carer. I’m 48 and my husband is 57, he suffered a major stroke last September and is just getting discharged from rehab next week.

I’ve been recommended this site as a place to connect with people going through similar situations so I don’t feel alone.

Currently, my husband needs hoisting and help with all daily tasks and no one is able to tell us if this will ever improve, but we are hopeful and are not giving up on having a future together!

Would be lovely to connect with others and help each other through the challenges ahead.

Heather

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Morning Heather and welcome the the site. Whoever directed you here has done you a great favour in my opinion. You can be certain that others here will be willing to share experiences and provide a very safe place where you can ask all those questions you never thought you’d need to ask.

There are members who will be able to advise you better than I on Benefits and other matters and I am certain they will chip in as soon as they read your post. They may ask what appear personal questions initially, but it’s just to make sure you’re aware of what help might be available to you. Remember, everything is anonymous and you can share what YOU feel comfortable with.

My husband, Graham, suffered a ‘mild’ stroke four years ago. That meant we had to close out Medical Practice as he was no longer able to treat patients, and I suddenly, and with no warning, became his full-time carer. Initially, he started to make a slight recovery and things looked hopeful, but a series of other medical issues gradually took their toll on him and he because completely dependent upon me. We went through many traumas and repeated out- and in-patient hospitalisations until he finally succumbed to multiple organ failure and died just before Christmas.

One thing I have learned through all of this is that you must never be backward in coming forward and DEMANDING help when YOU need it. Ensure that a Care Package for your husband IS adequate to protect YOU as well as him. Remember also that you cannot be forced to be a Carer. You must agree to that role. SO often people - including myself - walk into becoming Carers because the system ‘expects’ us to take on the role, for our loved one. If you find it too much you CAN say NO!

Any time you want to ask a question, feel free to post on this site. Also many of us ‘regulars’ use the monthly “Roll Call” thread to keep in touch and have a chat (gossip or moan if you want to call it that) and keep in touch with each other. You’ll find it here https://forum.carersuk.org/t/roll-call-january-2026/128005/632

We’re all one big happy family and no-one judges but friendship and concern abounds. I can vouch for that having recently been bereaved, everyone rallied round and the warmth of their love was, and still is, an amazing help.

Please ensure you make time for YOU in your new role. I made that mistake and have paid the price in being sleep-deprived and my general health has suffered. Indeed, our GP told me the day after Graham passed, that had I continued at the rate I was going, he would have lost TWO patients within six months. A salutary lesson for me for even though I had noticed the signs, my love for Graham would not allow me to slow down - I encourage anyone in that situation to please take a small step back and protect themselves.

You may find this charity of use in the future. They provide free breaks for Carers (just a small admin fee to cover their costs). Rooms are donated by the hotels concerned and you can have one break every twelve months (1 or 2 nights) just so you can switch off for a short time. https://carefreespace.org/

I wish you every blessing in caring for your husband. It IS a labour of love with many trials and tribulations, but I found - despite everything - it brought Graham and me closer together and that is what sustains me now as I continue to grieve.

:people_hugging:

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@Glebes_der Welcome from me too. I care for my 86 year old husband who had an acute on chronic brain heamatoma back in 2013. I think part of the issue is that it may be hard for medics to predict the recovery rate? However, it may be worth while planning for the ‘worst case scenario’ and getting as much help in place as you can get. It may also be worth seeing if you have a local ‘Support for Carers’ as they may know of local organisations that can offer help and support and information.

I would echo Chris with regard to Roll Call. It has been a life saver for me at times. Also please remember that NO ONE can be forced to care and the Carers Acts of 2014 and 2017 both upheld this. Many of us sleep walk into caring and what is almost bearable can become unbearable a few years down the line.

I wish you and your husband all the very best and look forward to getting to know you over time. Post as much or as little as you wish. Safe place to rant too as no judgement.

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Glebes, welcome from me too. I’m going to ask some difficult questions, to save an essay. Too many times hospitals send people with very serious disabilities home without anyone talking through the implications of everything.

You CANNOT BE FORCED TO CARE. Would it be better if he was admitted to a local nursing home where you can learn how to care for him before he comes home to you?

Have you given up your job?
Were the implications of this ever discussed with you?

Were you just told he was coming home?

Given any other options? Has anyone talked through the benefits system, legally managing your husband’s money? What benefits he’s entitled to, PIP, Universal Credit, Exemption from Council Tax?

Most importantly, has he had an NHS Continuing Healthcare Assessment? This would give you free care but is very difficult to get. If your reply is is “don’t know” then the hospital need to arrange one, with you present.
Has anyone talked about the amount of care your husband will need, how to toilet, wash, change him etc.? Do you have a wet room shower, has an occupational therapist visited your home to discuss the practicalities of this? Where in the house is he going to have his hospital bed, store the hoist?

Have they arranged “doubled up care” i.e. two carers to do everything he needs?

When will you have time off to go out? Your well being is crucial.

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@Glebes_der…Hi Heather, welcome to the forum. I’m so sorry you’re both going through all of this. I’m glad you’ve reached out to this forum, everyone is so supportive and I think you’ll find it a great comfort to be able to chat with others who’ve been through similar. I joined a couple of years ago, I’m 56 and my husband is 60. He’s had numerous health issues over the years including a Stroke, sepsis, hernia and kidney failure. It’s a long long story accumulating in 7 months in hospital and physio rehab. We’re no longer together and he’s living in assisted living with carers coming in doubled up twice a day. This forum helped me when I was at my lowest. Please make sure you get help with carers to assist you.

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Hello everyone, thank you for taking the time to reply to me.

I am going to try and be his full-time carer, I do work, but can work from home and have reduced my hours currently (As it happens, I work design and installing home adaptations for people with disabled facilities grants with the local council and private clients! - Didn’t think I’d end up doing my own this early anyway!). The hospital are trying to sort some care package, but I don’t want it to hold up his discharge - he has had enough of being on a ward!!

My job has put me is a good position to know what is possible in our home and I know the people to do it for me - so I have made a head start and changed my utility room into a shower room and my husbands office into his bedroom - which could also become our room if he is unable to make the stairs in the future. This has made me more confident that at least I have the facilities to make life a little easier for us. I have also had a ceiling hoist fitted and a ramp is just getting finished, ready for his discharge.

We do not qualify for paid carers, so I’m going to see how we go and then use a private company if and when the need comes. I watched my mum care for my father for most of my life, so I have lived a bit in this world and I see it with my clients daily. I know at the moment at least I get some respite when I leave him in the hospital, but then I tend to worry how he is doing and stress to get things done, so I can get back to him.

I can’t help but think it will be better to have him home and not have to try and cut myself in two between fitting in work/home and supporting him in the hospital, having everything in one place must be better!

The hospital is giving me some training on how to care for him and use the hoist etc, I guess we won’t know until he comes out how we get on…….but I’m willing to give it a go. The thing is with a stroke you are straight away but at the worst…then you try and claw yourself back to something like you were before, so you have hope that this will not be forever (but at the same time, I know we now have the facilities should he not improve)

Reading this back, I must come across like I’m fully in control and are very confident - don’t get me wrong….this has been a horrendous 5 months and I’ve gone through the why us thoughts and sat crying about all the plans we had, that may never now be in reach, but I’ve tried to pull myself together and face the here and now and not to look too far in the future. He needs me and I don’t want to let him down.

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@Glebes_der ….it sounds as though you’ve done as much as you can to prepare for having your hubby home which is good. I admire that you’re being so strong. I hope his move back home goes smoothly, remember if you need any moral support at any time we’re all here for you.

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Has he had an NHS Continuing Healthcare Assessment?

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Hi, I think this was done by the social worker. We have been referred for 4 x2 a day for a few weeks under NHS, but this apparently takes a while to set up. I don’t think this will be in place in time for his discharge. They are giving me handling lessons and teaching me how to deal with catheter etc. He has a feeding tube, but this is being removed today as no longer needed.

I think we can get a few weeks free NHS carers, then would need to pay. I’m going to see how we go as I’m going to pay for private physio to bridge the gap in the waiting list for that service too.

If I’m home with him I’m not sure what they would be doing and I’m sure there’s others who need them more than we do. I can hoist in chair and back to bed etc, fix meals. Just washing and dressing are unknown, but I’m sure we can work out a routine.

I think my young OT is more nervous about it than I am!

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They MUST NOT discharge him until an appropriate care package is in place, that amounts to an Unsafe Discharge.

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Been there and still got the t-shirt!!! I would urge you to refuse to accept him home til everything is in place. They will tell you he is being Discharged to Assessment, but all that means is that he is sent home then an OT or Physio visits to see what is needed at home!!! Til they get that sorted, you are stuck !

It’s really hard to say NO but you must protect yourself as well as your husband. The Bed Managers push the Wards to discharge him no matter what as soon as he is regarded as "medically fit for discharge. This even happens in Rehab units. You have to dig in your heels!!

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Hi @Glebes_der

I agree with @bowlingbun and @Chris_22081 .
Although you are well prepared with the wet room, ceiling hoist, ramp and downstairs bedroom all sorted and your husband is keen to come home; it is recommended to wait for the care package to be in place before accepting your husband back home. Once he is home there is no urgency for them to arrange this to be in place.

You might find this checklist helpful:

Even with the NHS carers coming 4 times a day, you will be caring/ responsible/ on call for the other 20 to 22 hours a day alongside holding down your job and running the household (including doing all the jobs your husband did) so please accept all the help you can get. The emotional toll on you both will be huge too.

Caring gets progressively exhausting the longer you do it.

Was your husband’s speech affected or is he able to direct his own care?

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I agree with @Melly1 ….you do need the support in place before hubby comes home. We had 2 x carers coming in 4 times a day and I was working full time and running the house whilst supporting and looking after my elderly parents who live with me. It’s tough especially when things happen outside of the carers times especially in the night.

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Hello Heather.

Please accept my best wishes for you and your husband. I was in your position when my wife was discharged from rehab just under four years ago. She is severely disabled by the stroke and has lost all use of her right hand side, and I am sorry to say it is not likely to improve. She also suffers from aphasia, but to a great extent her speech has recovered. She also has four care visits per day and is hoisted from/to bed. I do everything else: I am doctor, nurse, cook, dishwasher, laundryman, cleaner, entertainments officer, administrator, driver, you name it.

There is no getting away from this: it’s hard. Even with finances sorted, good support from GP, great love and support from our adult children, etc, it’s exhausting. In the early months I thought it was like being in prison. I could scarcely leave the house. I do get some respite breaks, but last year it amounted to a total of three weeks off. Right now, I have not had a day off since September. I can’t see this changing until the day one of us kicks the bucket.

My advice is to take every chance you get for getting time for yourself, whether that is a respite break or even a few minutes during the day.

All the best.

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Hello Heather and so sorry that you are in this position. You have had some great advice on here so I will not duplicate it.

My husband also had a major stroke Nov 24 and I was pleased to have him home after 3 months in hospital and rehab unit. I really believed together we could make great progress. His whole right side was affected so he has only his non dominant left hand working. His speech is badly affected and his hearing and sight on that side.

It feels to us that after the NHS physio stops you are really on your own. We had a review after 6 months where he told them he wished the stroke had finished him off which they made a note of but we never heard any more. I can’t believe this is it now! I do all the bathing, dressing, pushing around, phonecalls, paperwork, outings, counselling etc. he still sleeps downstairs in a hospital bed and needs me for most things. It really is exhausting and we are 72 now and I honestly don’t know if I will still be able to do all this for too many more years.

9 months after the Stroke our son (who lives with us now) was diagnosed with the worst kind of cancer and has had major surgery and is now undergoing chemo. So that was devastating and regulars will know I have a daughter with additional needs and autism so I am really a carer three times over!

I do hope things work out for you both. push for extra physio and don’t expect too much from carers supplied by NHS. We got rid of ours after two weeks as they were no help at all.

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