Suddenly feel out of my depth

[_R]

My husband suffered a severe stroke in early March and has complex needs. It has been a long and slow process to get him eating and standing. He is aphasic, dyspraxic and doubly incontinent. The hospital want to send him home as they find difficulty motivating him in therapy. I have been very positive for all these weeks but now feel panicky and a bit down. The reality of a very altered life is beginning to sink in and I am a bit tearful. Yes, generally feeling sorry for myself!! Hope someone can reassure me. Many thanks.

[Shazlette]

Hi Janet,
Welcome to the forum. I feel for you. It is very hard to see someone you love suffering. I don't know what aphasic and dyspraxic are but I am sure that there are many people on here who will be able to give you more support and advice than I . As nobody else has been along yet, I didn't want you to feel you were being ignored or leave you feeling left out. You aren't. People come on here at all different times of the day. There will be somebody along who can give you advice and reassurance. Becoming a carer is very daunting but as well as all the negatives we can feel, it can also be very rewarding. It isn't an easy life but it is one you will learn to adapt to.
I became my dads carer overnight. My mum was suddenly taken into hospital. She never came home and died 9 weeks later. My dad doesn't live near me so I live with him half the week and take him to do all his chores, cook him decent meals and generally run his home and health as well as my own. I am lucky that I am able to be home with my hubbie on a weekend.
There will be others along who will chat to you and give you plenty of advice and reassurance.

Keep strong.

Shaz ((((((hugs))))))

[Nem]

Hi Janet, very sorry to hear about your husband's illness.
The first thing I'd say is that you're already coping better than I did, you've found your way here before you've even begun taking on the role of his full time carer.
I would say that you need to seek the help of the other support services though. With the problems you've described your husband suffering, I am somewhat disappointed to hear that the hospital thinks that you are the most appropriate person to care for him because they are finding it too difficult!
Your husband needs a great deal of care and attention, if it's too much for the hospital, it's too much for you on your own. You're going to need help, I would suggest that the hospital should already be trying to help you find avenues for the way forward for his care. It's quite likely that he'll actually need a substantial period of residential care. He's going to need physical & cognitive therapy as well as round the clock care to look after his basic needs.
Unfortunately, the caring services can sometimes throw up a SEP (Someone Else's Problem) field in such circumstances, in this case, yours. When they did that to me after my Dad's stroke, I found the most effective tactic was to do it back to them. It was very difficult as you feel guilty for doing it, but I simply refused to cooperate with them regarding his discharge. I refused to sign any of the paperwork and ignored all of the letters and demands that were sent, this forced them to find him the residential care that he needed where he received all of the appropriate therapy for his condition. They're simply trying to send him home with you as the easiest option from their point of view. If you can't look after him and, with aphasia and dyspraxia, it's highly unlikely that you are equipped to cope, don't be afraid to say "No!"

[susieq]

Hello Janet and welcome to the forum

I'm sorry to hear about your husband's stroke and I fully understand your feelings of panic. Whilst he is in hospital you have the 'safety net' of being able to be with him but not having to 'care' for him - the thought of him coming home is frightening and daunting. But with the right support you will cope.

Do not let the hospital discharge him until proper assessments have been made and support is in place at home. There should be a meeting involving his doctors, the occupational therapy/physiotherapy teams and social services, to determine what aids (commode, rails, wheelchair etc) he will need and what support (care workers) you will both need.

The Carers UK Adviceline can give you lots more information on which benefits you are entitled to and support available in your area - their contact details are on the home page of the main website.

[_R]

Hi, Susieq,
Great to have your input and so quickly.
I wrote in haste and should have explained that I have had a visit from the OT, a meeting with all the therapists and his named nurse and seen and approved the checklist tool. Carers will be coming in 3 /4 times a day, we will be given a hospital bed, a glideabout commode and a rotastand, a therapist will attend daily. I met with the social worker who seemed to imply that he would not be likely to get continuing NHS care, though the OT is more hopeful. She said As my husband has savings and a teachers pension we are going to have to pay £2000+ Per month. That was a shock. Feeling better having received such warm replies.

[Matt Hill]

Hi Janet,

Have a read through of our pages on Hospital Discharge. It's good to know where you stand before you agree to have him home.
https://www.carersuk.org/help-and-advic ... f-hospital

Glad to hear they seemed to have done a checklist. But might be worth calling our Advice line too and talking it through with one of our experts. 0808 808 7777.

Matt

[_R]

Hello Shazlette,
Thanks for this reassurance and your kindness in replying so promptly. Sorry to hear about your mum. You must find it very tiring running two homes. At least I won't have travelling once he comes home.
BTW aphasia is the inability to speak or to understand more than simple things and dyspraxia is when the brain knows what it wants his good arm to do but the message doesn't get through so he cannot wave if I ask him to for instance. I already see more of an improvement cognitively than the therapists do because he will sometimes do things for me even though he is afraid he will not be able to do them, eg play noughts and crosses. So I guess I am arrogant enough to think I can help him recover!
Bless you for your kindness.
Janet

[_R]

Cheers, Nem. Thanks for getting back to me so promptly. Fortunately the consultant has delayed discharge until his transfers from bed to chair are more consistent and we are just starting the long paperwork, so I have a few more weeks. It was good to hear your experiences. Hoping I have your strength when Push comes to shove!
Janet

[crocus]

Hi Janet, I care for my husband who has an acquired brain injury, although his disabilities are different to your husbands the thing I found hardest was the change of role. Suddenly I had to make all the decisions by myself without anyone to talk it over with and I had to do everything myself - bills etc - that previously he had done.

So long as you have all the right support, you may find it less daunting than you feared.

If you are having problems make sure you push for solutions.

[_R]

Thanks, Crocus. Yes, I will have those problems too.