Decision made. Coming home

My husband is so very low and miserable that he has made his mind up he is coming home. Even in the Stroke Rehab unit he is getting hardly any physio or other therapy. Some days he sits 9 hours in a wheelchair opposite a clock. He might get half an hour physio or speech therapy but that’s it! At weekends there is no therapy of any sort and he just cries. This is not him at all but a side effect of the stroke. It is then awful for us as we worry all the time.

The staff are apologetic but say they are doing as much as staffing etc can allow. I have told the staff tonight who say he is free to go home but would prefer him to stay as he is still making progress. He says he cannot bear it after 10 weeks.

So, looks like as soon as equipment is all organised and carers sorted out, he will be coming home.

I am not confident at all but feel I have no choice. He cannot stand unaided so I couldn’t even get him in a car but it’s his choice. :cry:

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Just been browsing and NICE guidelines say patients in a stroke rehab unit should get 3 hours therapy a day over 5 days. He doesn’t get 3 hours in a week!

There is a large gym on site and they keep promising they can use it soon, but they’ve been saying that for weeks. One of the staff said they are just waiting for some paperwork to be signed off.

What a sorry state of affairs.

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@Trisha2

I know :slightly_frowning_face:

See what you can find on rehab exercises on this site and on youtube like https://post-stroke.org/ These include “passive” exercises for people with very little movement - it all helps.

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It must be heart breaking for you and your husband, and yes the tears do come freely after a stroke for some.
On a practical level,anyone, who says “is there anything I can do” say yes. I know how difficult that sounds. I see your husband 70s so assume you of similar age
Make a list of jobs someone else can do.
Change beds, bits of shopping, cook an extra meal and bring it, it’s as easy to cook an extra couple of portions. Ironing (or just don’t iron for a while, who will notice)
If it was someone else, you would help I’m sure and it makes people feel good so you are helping them too.
Explore local voluntary agencies, some have people who will sit with your husband for a couple of hours while you get out.
Think about on line grocery shopping. We have a weekly delivery which works so well. I’m 80 and mastered it after a bit of effort. Are there local shops that deliver?
Consider ready meals, certainly at first. There are several companies that deliver. Shed all unnecessary jobs so you free up time to spend with your man.
If your husband can’t stand yet there will be times when he wants you to help him rather than wait for the carers .This may not be an option as you need to look after yourself too.
Maybe with the help of staff at rehab it can be explained to him, what it is safe for you to do and what isn’t. This will be incredibly difficult for you both to accept.
The most important thing is there are lots of things you CAN do to support him and the most important is love. Never lose sight of the fact you are his wife first, his carer second.

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Sorry ,me again @Trisha2 .
Invest in a really nice notebook that is good to write in.
Have pages for names and phone numbers of all involved in your husband’s care. In some areas carers may come from more than one care agency. Physio, OT may have the same number.
Have husband’s nhs no and hospital number handy too. On discharge check you will get a copy of the letter sent to your GP
Keep a diary of who came when.
Also keep journal of progress and how you are feeling.
You think you’ll remember but you may not.
Write down dates of when you rang team members and replies.
Write when you ordered medication too.
Check if your pharmacy deliver, if not, find someone who could collect for you.
I know I’m going on, but if even one of my many ideas help it’s good.
You can do this!

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Hi Trisha. When I was in hospital after my stroke I too found there was very little physio. Tha physiotherapists were so busy and new stroke victims would come into the ward and would rightly need immediate attention. However when I left hospital the Community Stroke team took over and were amazing. I had physio at home once a week for 8 months. Obviously every area is different but hopefully your husband will get this help too. If it doesn’t happen contact PALs at the hospital and ask them to make enquiries. They are usually very helpful. The other thing is that your husband should leave hospital with a care package. I was offered help 4 times a day but we didn’t use it and just muddied through. Also an occupation therapist should visit your house before he comes home and see what equipment your husband needs. I had a frame fixed round the loo to help me get up, a wheelchair, handles fixed in the shower, etc etc. I really hope you get the help you will definitely need. Keep in touch and let us know how it goes. Janet

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If you can’t get him in the car invest in wheechair access taxis. As the weather improves it will do him good to get out for a while even if it just to a garden centre for coffee or a pub garden for a drink with friends.

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Hi @Trisha2 - This is quite difficult and decisions are perhaps being made in emotionally charged state. Try and remain calm and focused throughout this process - get your daughters involved if possible.

The discharge from hospital must be a safe discharge and it is really important that the home is ready to support all needs required to care for your husband at home.

We had a couple of failed (unsafe) discharges and it is not pleasant. Even though an OT visited the house and declared it safe to come home to, it was not. The hospital staff and the DMT were just keen to get Mum out of the hospital and “pressured” us into making decisions. We pushed back as much as possible, but in similar circumstances to yours, there came a point when we just had to get out.

Once you are home, it may be difficult to get access to some of the things you can get in the hospital. This is again based on real experience - Mum would have had access to gym and physio in the hospital, but once discharged home, that was lost and then we didn’t even get a physio for a very long time.

It is a difficult choice and you have to do what feels right for you and your husband.

At home, as mentioned in earlier post be Wendy @Bagrat , we have a book in which we log everything. It’s effectively a day journal and comes in real handy. If it helps we are in Book #12. Daily entries are on new pages which helps make it easier to find things.

I concur with everything which has been suggested by respondents above and wish you and your husband all the best.

Finally, and again someone already mentioned this, standards and services vary from place to place and so you have to try to get however much is available in your locale. As an example, we love in London and in our neighbouring borough, the stroke survivors get much more access to services than we do - physios being a major difference. We get little to nothing, but the neighbouring borough offers a lot more. One of the physios who was helping us said it was a shame we live in this borough as we are missing out on so much physio :frowning:

But that’s life and we get on with it :slight_smile:

Take care.
:pray:

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I have just read your post and its heartbreaking.
My husband came home after 12 weeks in hospital/rehab unable to speak or move anything on his right side. It was very hard at first as the care package supplied didnt work out at all. I have to say the community team of physio and OT from EDS were just fantastic. I had the molift to get him from bed to commode and then to chair. Eventually we found our way and now i cant believe how far he has come.

He will really improve by coming home but you have to find a way to make it work. Its no quick fix but the results do eventually come.

I am sending you lots of support and love!

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@Trisha2 i can’t add to what others have said but just wanted to wish you both lots of luck. I’m sure you won’t underestimate how hard it will be but you will soon get into a routine that suits you. If his morale improves i’m sure that will feed into him making progress.

As has already been said take all the help you are offered.

Best wishes

Ann

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Thank you so much everybody for your support and good ideas.

The OT came out about two weeks ago so knows what we need.

I have a roomy diary all ready to use.:wink:

The discharge team will all work together to organise a safe move to our home.

I had a good chat to a physio and like 95% of the staff he really cares and is kind and cheerful but says they simply cannot do more.

What upsets me is this is a modern, purpose built unit specifically for Stroke patients. There is A large, fully equipped gym that they keep saying “you can use in a few days time” but that day never comes. It just seems a total waste.

I have spoken to other families and they all say they are not happy about the lack of therapy. The main hospital tells us this unit is great and can offer all sorts of therapy and far more than they can. But the physio guy says they shouldn’t say this because they are very limited in what they can do. He says they just want to free up their beds.

I could cry tonight, I really could.

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Hi Trisha2

Your post really resonated with me on two fronts, my husband has been and continues to be very depressed after his second left basal ganglia stroke but we understand that can be typical of his type of stroke. Also the hesitance about him coming home. Dave was in hospital then rehab for just over 4 months and we are now 1 year on from that. I still feel inadequate in terms of his care (I also work full time) and find fitting in little things like clipping nails, cutting hair etc… quite tricky. But the hardest thing is managing his expectations of what each day will look like. However, having said all of that we are managing just have to be kind to myself and find little pockets of time to do things that bring me joy.:hugs:

But completely echo what everyone says about community rehab, they are great!

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@Jonesygirl hi & welcome to the community. Sorry to hear of your husbands strokes. It sounds like you are doing an amazing job of looking after him especially given you work full time too. Managing expectations is always hard & no doubt causes some angst.

Look forward to hearing more about how it is going.

Best wishes

Ann

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@Trisha2 sending a hug for you. It must be very tough & scary right now. It does sound like you arw pretty on top of getting things ready for his discharge. Well done.

In relation to the stroke facility it really does beggar belief that there is a facility there being wasted due to lack of resources & I am sure that it probably increases resource expenditure elsewhere as people who should be getting better quicker aren’t & therefore consume more for longer. Hospitals rwally shouldn’t give false hope either but I suspect they are just trying to make the best of a bad job too. It’s a dreadful state we seem to be in.

Take care.

Ann x

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Hi @Jonesygirl - In keeping with tradition, this is to welcome you to this community. I am sure we will benefit from the experience you have gained from caring for your husband Dave. You are absolutely right about being kind to yourself - it cannot be easy looking after Dave and holding a full time job - so well done :slight_smile:

If Dave is not a member of this community, perhaps he may also benefit by joining up as this forum does present all sorts of opportunities to gain knowledge and interact with people with similar experiences.

Namaste|
:pray:

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Hi @Trisha2 - I don’t know the severity of your husband’s stroke, but I wonder if maybe we might be expecting too much too soon? I mean, for my Mum a half hour of physio / SaLT would have been quite exerting.

I just wonder what sort of assessments have been done to determine the care needs for your husband.

What exactly does the physio who is very kind and helpful have to say about the capacity for your husband to take on the physio?

I wish you and you husband a safe discharge and successful recovery.

Fao all readers of this note, I want to be absolutely clear that what I write here is my attempt to try to help and to share what we have already experienced so that you do not have to go through a steep learning curve unless you want to.

I appreciate, I may have misunderstood what you asked and therefore, if you feel that what I am saying does not apply to you or if you find it distressing or in anyway something you would rather not have to read, then please IGNORE the below “lessons learned” that I am sharing with you. If on the other hand you feel it may benefit, please take from it as much or as little as you wish.

It is not my intention to waste your time or to deviate from the subject you wish to discuss and for answers you seek*

NOTE:
WHAT FOLLOWS IS BASED ON OUR PERSONAL EXPERIENCES AND MAY NOT REFLECT WHAT HAPPENS IN OTHER PARTS OF THE COUNTRY AND TO OTHER PATIENTS.

At this point, I have to point out, our experiences are the consequence (I am not sure if this is the best way to phrase this, but I am not proficient in English) of DELIBERATE DISCRIMINATION AGAINST PATIENTS OF A CERTAIN AGE GROUP.

You may already know this, but the MDT (Medical Decision Team) will write up a discharge package for your husband and each of the disciplines caring for him will have their section in the report. So the consultant will write a summary of how the patient was presented and what treatment they had. Other specialists will have their own sections in the report and so the physio will write what they did for patient and what they recommend as ongoing care post discharge. Similarly, the dietician will do the same and so on.

On the note of the discharge summary, again purely based on our experiences, it may not necessarily reflect reality (sorry, but the real world is sometimes different). As an example, Mum’s discharge note said she needs to be turned every two hours in bed. The notes said the nurses did that whilst in-patient. No - this did not happen. We were with Mum 24/7 when she was in-patient and we know exactly what did and did not happen. So this two-hour turning is what is recommended and what might be a criterion on which the hospital is measured, but the harsh reality is this is not what happened. Nevertheless, the report is there as a baseline or reference point.

When Mum was in hospital, she was essentially bed-bound and so the physios would come and try to sit her up on the edge of the bed and see if she can support herself, what sort of cognitive abilities she had. On occasions Mum would fall asleep within minutes as it was too much for her at the time. With the limited availability of trained staff, this then meant that her slot of physio was only 5 minutes (from say a scheduled slot of 15 minutes). This meant the pace was slow and it was quite a while before she even got to see the inside of the gym.

What is supposed to happen and what actually happens are very different, at least based on our experiences. On some days Mum didn’t even get to sit out in the riser/recliner chair or the wheelchair. This was due to there only being shared equipment - 6 people were sharing two chairs !!! So you had a slot and sometimes if you missed it, you missed it.

Also, the reality for us was that even in the hospital, Mum only every had “full” access to staff on 3 days of the week - Tuesday, Wednesday and Thursday.

The way it worked was Weekends was skeletal staff and duty doctors only. Physios and other specialists did not work weekends for in-patients.
That meant you had your meals and a bed bath if you were lucky. Of course, they are very hot on medications and so you ALWAYS got those on time and indeed they took priority, so the meds rounds took a lot of the time out of the day.

Fridays - were discharge day and so the whole day was focused on discharging patients. It was a tick-box thing where it seems the hospital was trying to meet some sort of NHS targets :frowning:

Mondays - these were some sort of admin type day when doctors caught up with what happened over the weekend or something and so again very little happened on Mondays.

For us this was the reality of the NHS hospital we were being cared for in.

At all times, most staff were nice, however they were often stretched and ultimately the hospitals goal became very clear, once they had pigeon holed Mum and that was to “free up her bed”.

Namaste|
:pray:

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The nhs is so screwed :sob::sob:

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Thank you to all, I am hoping one day he will join this community but he says he is not ready to yet.

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I have to say @ManjiB when I was working in the community, it was beyond belief that Friday was considered a good day for discharging any one. GP surgeries closed at 5,often phones off 4pm, no regular Social Worker only emergency number and duty SW. No physio, OT. Only urgent access for district nurses.
Ideal day to be discharged home.
I would urge anyone to dig heels in if your loved one is to be discharged on a Friday. 98% of the time it will be fine but should you need a bit more help not good.

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Hi @Jonesygirl

Welcome to the community, I’m sorry to hear about your husband’s stroke.

As others have said, it sounds like you’re doing an amazing job with caring for your husband and also having a full time job.

Please do keep us posted on yours and Dave’s progress.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna