First stroke was 18 months ago and left him mostly in a wheelchair but walks from room to room on quad stick. He had another stroke (traumatic bleed) 10 days ago and is still in hospital. I was already exhausted from caring for him and doing everything and now it looks like we will be back to square one. His speech is poor, his hearing is poor, his mood is low and I dread him coming home. Even though I have had to do a 60 mile round trip most days to visit him I have had a wee bit of time to myself. Just choosing when to go to bed and when to get up has been a treat.
I probably shouldnât feel like this but Iâve said it now! The thought of spending the rest of my life doing this is terrifying and depressing me. Friends keep telling me to look after myself but how can I? He needs so much help and only has use of one arm/hand so he is very limited in what he can do. So I do all the driving, entertaining him, arranging appointments, gardening, cooking, cleaning, showering, etc etc. i feel guilty admitting this.
Hi @Penny , sorry to hear that you dad had another stroke. I am sort of in the same boat as you looking after family and think I am going to be trapped like this for rest of my life. I think you are going to have to speak to someone and say that you need extra help or would it be better for him to move to somewhere where he need more around the clock help. Maybe it worth speaking to the stroke association a link can be found here : https://www.stroke.org.uk/
Speak to the doctor or the ward sister who can help you with further info to decide what to do about your dad. It taken me up to now to ask for help and that because of the way of the system is and I would tell people now ask while you can. Take care
Thanks. Itâs my husband not my Dad. No way would he go in a home and I wouldnât want him to either. I feel very sorry for him but sorry for myself too.
@Penny , sorry I got it mixed up. You need to speak to someone who does not know you or your husband as someone who does not know you fully can help with a clear picture and some times off load when you need too and you are not feeling judge by those who know the case or the background. you are welcome to come into the Roll call and chat to the others as some have a better idea on things like @Sue24 and @Chris_22081 and even @bowlingbun .
Hi @Penny Iâm so sorry to hear heâs had another stroke. There is absolutely nothing wrong with sharing how scared and depressed you are - no âshould-ingâ or judging yourself please you have every right and reason to be feeling like you are. We hear you and there is no reason to feel guilty saying all this out loud or here.
You also need that sleep so that you can think about things. It doesnât sound like you can do things on your own for him, not just a question of his wishes (his or yours) but also a question of what rehabilitation could be needed so he can potentially regain movement, and to make sure youâre both able to do things safely.
First things first, though - get some sleep and rest, but donât get pushed into discharge before thereâs a next step plan for his rehab / care support in place.
He may not want to go into a home, but if thereâs specific rehab Physio and training to make him more capable day-to-day - for both your sakes it could be worth considering.
Hi Penny, sorry to hear that your husband has had another stroke. The round trip, as well as having your daughter to keep an eye on as well, sounds too much for anyone to do alone. Torn in all directions and bone weary. Have they given you any idea of time scale? Could he move to a more local community hospital? Before he goes anywhere he now needs an NHS Continuing Healthcare Assessment. Representatives from everyone and a meeting including you. The rules may have changed since I was involved with mumâs application before Covid, try to find out more. Maybe our CUK helpline? If he qualifies, your husband would be entitled to all the care he needs, either at home or residential care free of charge. So much depends on where you live. The last thing you need is another battle. Can you take a day off once a week to have a lie in?
Penny Iâm so sorry to read about further problems for your husband AND for you.
Each time Graham was hospitalised I found myself becoming stronger at saying âNOâ when certain staff tried to push for discharge when I didnât believe he was ready or there was insufficient preparations for his return home. BUT it was hard. He wanted to be home and I wanted him home, but we had to consider the practicalities.
After his stroke we had amazing support from the Early Discharge Team who came out five days a week to run through exercises, check the house and monitor his progress, but after one of his later in-patient stays the physio in charge put so much pressure on me - even phoning while I was on a two-day Carerâs Break which they knew about, to tell me Graham would be discharged next day - trying to blackmail me into agreeing. I had to point out that no-one was at home to receive him or care for him, therefore it was an Unsafe Discharge and when I next went into the hospital the duty Ward Manager wasnât interested.
I still donât know how I got through the last year after that discharge. Like you, my batteries were drained and I had no reserves and although our GP was amazing, we got no extra support from the NHS in general. The GP had read the signs and knew what was coming and tried to protect me but was very limited in what he could do.
I agree with BB - I think you need to explore the options of Continuing Health Care which would give you full support at home. When discussing a Discharge Plan, INSIST on a very clear plan for Care at home. We had a terrible experience with one âcarerâ turning up three hours late on the first day then moaning about how far she had to travel and telling Graham she wasnât there to wash him just to tell him how to wash! This for a man hardly able to stand or put up a face cloth at the time and unable to get himself on and off the toilet let alone dress himself. Suffice to say I told the provider where to go.
Itâs not all gloom and doom. However, you do need to be prepared to push and fight a bit - not easy when you are so exhuasted.
Graham spent five week in a re-enablement unit where he had regular physio which helped tremendously and they got him walking and doing a lot towards his own personal care. If you can press for something like that it may help you.
Hi Penny, welcome to the forum. Iâve been through something similar, my husband had a stroke and various serious medical episodes over the last 5 years. Iâm away at the moment but wanted to reply to you to let you know there is absolutely nothing wrong with feeling the way you do and you shouldnât feel guilty. Iâm glad youâve joined this forum as it helped me in my lowest times and the people on here are amazing. Sending lots of hugs your way.
@Penny Can only echo Sue. Your feelings are normal. TBH I can understand you do not WANT to put your husband in a home but if you could find one near to where you live it might be what he needs not wants to be kept safe? I frankly do not think you have to visit him every day given the distance. What would happen if you had a breakdown and could provide no care? Worth talking to the hospital staff and saying how concerned you are about being able to cope when he is discharged? The situation sounds veyr âfluidâ as in you do not know if he might improve so please just take it day by day until things become clearer. Thinking of you.
Penny, youâre entitled to a Carerâs Assessment from your council in your own name, completely separate from his. Thatâs the route to actual respite, a sitting service, or replacement care so you can have a proper lie-in or a day off without it being a favour you have to beg for.
The other thing worth knowing before he comes home: the reablement support Chris described (the team coming out to do exercises) is free for up to six weeks and itâs a right, not a maybe. Ask the ward whoâs organising it before any discharge date is set.
Has anyone from the hospital actually sat down with you yet to plan what support comes home with him, or is it all still up in the air?
Thanks everybody. He had 10 days in the main hospital and has been in a very small hospital since Monday. It is only a 10 minute drive now and he is there for rehab. At the main hospital we were told it was a traumatic bleed. He was on the stroke unit. Communication was very poor but I believe, from researching myself that it comes under the Stroke heading. I think in those 10 days the only exercise he got was 10 mins on an exercise bike on his last day.
When he had his first Stroke we had carers but they were hopeless and we got rid of them after 2 weeks. Physios visited for 6 weeks which was then extended to 12 weeks as I complained! He was in the Stroke Rehab Unit for nearly 3 months and the gym was closed the whole time and they should have had 5 physios but there were only 2 so he often spent 9 hrs in his wheelchair.
it was a physio who told me today that he could probably come home early next week. No mention of any plans or support so I just assumed that was it! I did ask how he would get home and asked if it would be by ambulance and she said it could be in my car. I said I was scared of him falling and she said if itâs dry tomorrow we can practice getting in the car. I really donât feel confident, then I have to get him into the house by myself.
@Penny when you go to the hospital tomorrow bring all this up with them make a list so you donât forget the things you want to say. Ask to speak to the discharge co ordinator/ward manager mention help ,plans , support, rehab and ask them what they are planning to do.how is he now can he walk at all, how is his mobility, have they been giving him physio.what is your opinion of him physically since he has this second stroke. If his mobility is bad, and he cannot walk or manage. You tell them you want him to have longer rehab ,you tell them you need a care plan and support and until he is more mobile heâs not being discharged and sent home.and when he is you want hospital transport arranging. Also when someone is discharged from hospital and need help to regain how to do things they can get a 6 week reablement package of care where carers will come in and help and it is free care for 6 weeks and he should have a needs assessment, you can ask for a carers assessment . And the hospital should arrange that care. They should also arrange physio to come to your house to. Now during that 6 weeks care package a social worker will come. Now I donât know how your husband is or how much he is going to recover when this social worker comes out ,you ask her to put in for continued health care it is free care by the nhs ,no one in the hospital will tell you about it so I am. And the social worker should put into your local intregrated care board for a checklist and an assessement. He has to pass the checklist to enable him to have an assessment but the person who does the checklist has to know what they are doing. If the social worker starts saying he wonât get it, or doesnât put in for it. You find the phone number for your local intregrated care board where you live.type that into Google it will bring up the number you ring and ask for a CHC checklist and assessment for your husband and they should send someone out to do a checklist then if he passes that he goes onto the next stage the assessment. That is what I found out. It is not easy to get.but you have to fight and not given in it is paid for by the nhs. It is not means tested it does not matter what income or savings you have. If he did not get it. Then after the 6 weeks if you needed help and he did not get CHC .then you would need to have a financial assessment of the council after the 6 weeks. As care from the council is means tested. And goes on savings and income based. But donât let them bully you into that until your husband has had a continued health care checklist to see if he passes that and can then go onto the next stage the assessment to see if he can get CHC of the nhs first after the 6 weeks free enablement package. There is a website called caretobedifferent.co.uk that will tell you about continued healthcare if you look at the top of the first page you will see the words getting started click onto that go down the list till you come to the heading the national framework for nursing and continued healthcare click on that and it will bring up information on it the checklist and the criteria you can have a read of it and compare it to how your husband is, that is what he would need to pass to get continued healthcare for free after the 6 weeks free enablement package . If he did not pass it ,then to get care of the council people have to have a financial assessment as it is means tested based on your husbands income and savings in his name or joint savings, but not in your sole name and home care your house is disregarded but asked for the 6 week free reablement care package and put in for a continued healthcare assessment first . I hope this helps. Please take care.
@Penny It is YOUR choice but from what you have put, it sounds very dangerous to have to take your husband home and get him out of the car? Surely you can refuse to do this? No one can be made to care? Is it worth phoning your local âSupport for Carersâ if there is one in your area and asking for help? You could point out that the hospital have a âDuty of Careâ and that your husband is a vulnerable adult?
Penny, it sounds like no one appreciates how much your husband has been affected by this second stroke? No OT home assessment, no new Carers Assessment, nothing at all? Has anyone mentioned a Continuing Healthcare Assessment? Do they even know you have other caring responsibilities?
@Penny@bowlingbun is so right. How are you supposed to get him from the car safely into your home? You could hurt your own back? Or he could fall? This does sound very dangerous potentially? I do not drive but I KNOW I could not physically get my husband from a taxi through our door if he was not fully mobile.
OT rang and we have made appt for a meeting there tomorrow afternoon. When I was there Thursday I told them in no uncertain terms that I was not happy. The previous day the physio said I could take him home myself. I said I wasnât sure I could. She told me to come in on Friday and she would assist me for a trial run. I turned up at 3.25 and was told we couldnât do it as she was going home at 3.30!! I told her she gave me no time to be there and she should have phoned me if she wanted me earlier. She said âI didnât think.â I told her she damned well should have done! She said physios donât work at weekends so it would be Monday. Husband was upset, so was I and she went off in a strop and came back with a wheelchair and said âLetâs have a go thenâ. He did manage but was very wobbly but he told her he felt OK and that he could manage.
I complained about this and a few other things and a nurse then came with her clipboard and told me to give her the âbullet pointsâ. I think she was scared I would leave a bad review. Hence the OT calling me today. I am fed up with having to complain but I have no choice.
