Here is a copy of emails between my wife and her friend, a physio, in Canada.
It is very revealing about those early days with good advice which I think is worth sharing. For us, it’s still relevant today.
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Homecoming
14 April 2022 at 08:45
Hiya,
Bob came home on Tuesday. The hospital were throwing people out to make way for Easter.
He is still paralysed and hard work, I’m knackered already. He has 2 carers coming in 4 times a day but they don’t do much. Hopefully things will settle down once we get used to him being the way he is, nowty and frustrated.
He fell out of the wheelchair that same Tuesday night and was on the floor for 3 hours till someone came and got him up. I phoned for an ambulance and was told it would be 8 hours before anyone came. Anyway as it turned out they patched us through to a man who has a hoist and Bob was up and on the bed within half an hour of him arriving.
Hugs
Hilary
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A friend’s reply:
Yeah for progress, even if it seems that there is no progress at all now. There is a TON of adjustment when someone comes home. Super hard for both of you when you aren’t 30 years old anymore, nor have someone young living close by.
I’m sorry the first few days have been really tough. I have seen how tough it is on those at home and those going home first hand so understand your exhaustion, frustration, anger, feeling of helplessness.
It SUCKS!
Thanks so much for telling me Hilary as I was thinking of you both.
Wish I could be closer so that I could lend BOTH of you a hand or shoulder!
Take or leave what I said below.
Nice thing about emails is that you can shut it down and discard it and it doesn’t hurt anyone! hahaha
The following comes from observations of what I have seen or heard when doing visits to homes or trying to arrange for people to go home and from working with clients in the hospital and out-care after serious injuries and strokes.
I totally understand that everyone is different and will respond differently and some of this may not apply.
If Bob didn’t end up back in the hospital yesterday then you both are doing well and as good as you can do at the moment.
It is super hard on Bob, as he sees how much work he is putting on you, and also to understand “where he is physically”.
In the hospital when you have the rooms set up for someone injured (as this is a brain injury), and meals are brought, people are available, floors are smooth and level, temperature is often the same, and there is the same routine day in and day out, it often gives a slightly unrealistic idea of how good one is.
Then when they get home, all ‘shit hits the fan’ as there isn’t the same routine, you want to be able to do what you did before the injury, you want to do more around the house, you want to be the old “you”, you want your spouse to look at you and treat you like the “old you”, all of which to varying degrees is impossible.
I totally understand Bob’s AND your moods and levels of frustration and tiredness. One HAS to face the realisation that things will not be the same anymore and that is damn tough! Especially when it isn’t /wasn’t in your plan of how things could work. That is so hard and is so frustrating. {{{HUGS}}}
Oh darn about the fall and having to wait so long. Will a physiotherapist or occupational therapist be coming to the house for further treatments? If so, get them to work with BOTH of you as to what to do, or how to get Bob upright and then back into his chair or the bed. There are some “tricks” that ‘might’ help.
One of the things is to have stools of varying heights to lift oneself back onto. So the first one may be only a few inches off the floor, the next regular stool height, then regular chair height, then wheel chair.
The reason we have done that in the past is there may be strength to lift oneself 3" or 6" at a time, but NOT the full 18 to 24" off the floor. So you
do it in steps. Also that way you can rest between “lifts”, even if it is 5 to 10 mins and the whole process takes 1/2 to an hour. Still faster than waiting for someone to come with a lift.
OR they can get you a lift!
Hilary, make sure you tell the carers what YOU need help with. i.e. : changing the bed, bathing Bob, moving furniture, literally anything. You have to remember they need direction as to what they should do… every household is different and certain people expect more, but don’t give a vibe like they need more… or what they need a break from. I have been in that situation where the care-giver has everything “perfect” when we arrive, and doesn’t give us the clues as to where they need help.
Do you just need a break from doing exercises with him? What do you need a break from ?? Not that they will do it every time, but if you don’t have to do it once or twice in the 6 times a day, it is nice.
Make sure you let them know…. 
and if you and Bob are at odds as to where the help is needed, discuss that with them so that maybe THEY can come up with a solution that will work for both of you.
Remember no one is a mind reader… you/ Bob/ or the caregivers.
Bob, good luck and we are so glad you are at home. (even though hospital is easier)
At least you are able to come home… that the stroke didn’t take away your thinking/ talking ability and leave you completely immobilised. Things will get easier. You will continue to get better even faster, because there are more things you need to do by yourself or almost by yourself.
The frustration / anger is normal. Give yourself time to continue to improve. Try and have patience with yourself and others. Don’t expect to be able to do something overnight. Think of it as a new job you are having to learn, and there is no NEW job that one becomes proficient at overnight, or where all communication patterns are clear right away.
Try things, then if you just “can’t” at that moment ask for help (please and thank you) just like you would at the hospital… there will be times that you can do something perfectly then the next not as perfect… or maybe not at all… that is normal.
Did they give/ get you a hand reacher for at home? A stick with grips on it to reach for things? If not ask… they are available and a HUGE saver for when things get dropped. They are operated with one hand.
Hilary, be kind to yourself too, as you learn to be a caregiver. It is a new job too… a change of roles — both as husband and wife and on how you care for each other that neither of you asked for, so it is especially hard to process. I also think as we get older it is harder to change to learn those “new” things…
It takes A LOT of patience and understanding. It is super hard to see Bob struggle, to take 5 to 15 to 30 mins to do something that he used to do in much less time… but think of some of it as therapy.
Let him try, and try not to get frustrated waiting for him to try to figure out how. Remember it doesn’t really matter if it takes longer to do, if you aren’t going anywhere. You don’t have to do everything. You may have to wait until he asks you to do things, OR you may have to explain to Bob why something needs to be done quickly at that moment, or why he has to wait… is there something else that can be done while you finish up something else.
and now I have blabbed on, BIG HUGS to both of you!!!
Nancy
(Physiotherapist, retired)
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(These messages between my wife and her friend are as relevant today as they were 4 years ago. I’m still nowty and frustrated at times. Re-reading this brings it all home, but not in a bad way. There is a future of that I am sure.)
keep on keepin’ on
) and he was allowed a couple of weeks off once I was discharged from hospital. To be honest, I was happy for him to return to work because it encouraged me to do things on my own, which I wanted to do anyway but could be difficult because he wanted to help. He knows now that when something doesn’t get done, it’s because I’m not feeling up to it and that I’ll get round to it when I’m ready. It used to frustrate him and he’d want to step in but like me, he’s learning that we can waste a lot of time and energy on things that really don’t matter, even though we used to think they did. Life has become a lot more relaxed in general and I enjoy that aspect of it.
