Hi. My names claire. 6 years ago my 20 yr old son suffered a broken neck in a car accident. He’s now tetraplygic ( paralysed from chest down ). One year later my husband suffered a massive stroke He is now paralysed down his left side with some brain damage. He is also confined to a wheelchair and cannot walk or stand. I feel like we’ve been to hell and back. Getting the house adapted for my son. Then applying to the council to get hm rehoused so my husband can have the garage that was converted for him. Having to share my home with carers (although they’re wonderful I struggle having other people here ) there’s also the feeling of having no future to look forward to. All the things we had planned can’t be done anymore I care for my husband and work and have the constant worry of my son who I support as well although he does have live in care I have wonderful friends and family and I’m very lucky. But it would be nice to chat to people who understand how limited life is now and how lonely it can all be
Hi Claire
Welcome to the forum.
Very sorry to read your post. My situation is slightly different to yours as my lovely husband is in a nursing home because of strokes and vascular dementia. Other will be along to offer practical advice. I just wanted to tell you that life is lonely with tragic changes in lives. Even in a crowd it can feel that way. That is something I do understand. The forum is a good place to vent, no one judges, and we do become cyber friends.
Take care xx
Hi Claire, welcome to the forum.
What support are you currently getting, so that you can have proper time off from caring?
Have you had a Carers Assessment from Social Services?
Is your “garage” self contained, or do staff have to go through the main house?
I had a car accident some years ago, for five years I couldn’t climb stairs properly, so my son converted my garage for me - I sleep in my own “Granny Annexe”. Can carers come and go without entering the main house?
Hi Claire
‘To hell and back’ indeed, but the important bit is the ‘back’. You have all survived and it does often happen that only once the initial urgency and shock passes that the carer realises just how much life has changed and that there is little support for them.
So we carers have to look after ourselves, and learn to put ourselves first sometimes, often for the first time in ages.
Do you get any breaks, any free time for yourself at all? This is vitally important if you are going to be able to carry on caring.
It’s also very worthwhile having some counselling to help you understand this new situation. Best is face to face private if you can afford it, or you self refer for some CBT by phone or online. I can’t emphasise too much how good it is to have someone outside the situation that you can talk openly to and say all the things you want to, but can’t to family and friends. It’s saved my sanity in more than one occasion.
Have a good look round the forum and just plunge in wherever you want, start threads in anything you want. You’ll be surprised how many there are of us, in varying situations. I have a 95 year old Mum in residential care and a young adult now coping well with anxiety and low self-esteem. It’s taken us nearly 6 years to get him this far. Caring tends not to be short term!
Kr
MrsA
Hi. How lovely to hear from you all. I haven’t ever been on a forum before but already I can see what a help it will be to chat to people in similar situations. On Christmas Day my disabled son ended up in hospital for a while due to a blocked catheter. Tonight we are trying again to spend some time as a family without any dramas if possible!! I shall be back tomorrow Happy new year to you I look forward to hearing more x
Dear Claire - how absolutely appalling for your poor, poor son…just a living nightmare that such an accident happened to him…
BUT, and please please don’t think I say this trivially or lightly - but…please, NEVER give up hope of a ‘cure’ for him…
We are already beginning to see the promise that stem cell therapy is having to regrow the links in nerves and so on and so forth and at such a young age for him (desperately tragically young…), it is entirely possible that within his lifetime this line of therapy will become the ‘tried and tested’ option for paralysis…please NEVER give up on that…
As I say, I do not say that ‘glibly’…but if I said to you…would you rather he had had a diagnosis of terminal cancer, say (rare, but appallingly not ‘impossible’ for a young person)…than the severe paralysis he has now?
One of the things I have learnt from my husband’s death (in his fifties - SO much more life than your poor son has been able to have in a healthy body), is this - that while there is life there IS hope…for my husband, and all those with such lethal illnesses, there IS no hope in this life…
So for your son - long way off though it may yet be, please do not lose sight of that. What may seem ‘miraculous’ at this time may become commonplace in a matter of years…
May the coming year bring him just that little, little bit closer to such therapy working…may you and he find the courage you need in that hope…
Kindest wishes, Jenny
Good morning. I’m sorry to hear such sad stories on here but also positive thoughts and suggestions. Sorry to hear you lost your husband at such a young age Jenny and that another lady has to have her husband in a nursing home. All so difficult to come to terms with. Although obviously I wish none of this had happened to my family we are incrediblely lucky to have the help that we do. I often think of people in other countries that might not have the support available that we do. My son was in hospital for nine months following his accident. We had our garage adapted to his bedroom and a wet room put in. Because of his level of care needs he has to have 24 hr care. So I had to get used to sharing my home and all my facilities with strangers. I felt like I was living in a hostel. We don’t have a big house so we couldn’t escape from each other. Then when my husband had his stroke a year later he was in hospital for four months. So now I had to deal with everything by myself. It was a very difficult 4 years sharing our small semi with a live in carer and two wheelchair users. My husband has one care visit a day to get him showered and dressed while I get myself ready for work. He then goes to a day centre 4 times a week which is a real life saver. They are amazing people. They look after him so well. He can’t do anything for himself so the alternative would be him sitting in his wheelchair just waiting for me to come home. Or even worse, me not being able to work I was offered respite care in the early days but it was pointless as I had to cover my sons carers 3 hours daily breaks. So if my husband went to a home for a week I still had my son to look after and his carer in the house. But when my son was able to leave home last year I did start having some respite care and have come to rely on it. Just to be able to have a normal life for a few days is wonderful. I can feel very trapped at home as I can’t just pop out or go round to friends although I can leave him for a while. But then you feel so guilty leaving but taking him anywhere is such hard work. Like I say I’m very lucky and I appreciate all the help we have. But although I have lovely friends no one really understands how hard it is to be at someone’s beck and call 24/7 The constant worry of everything. Trying to juggle work and doctor appointments and hospital appointments. I have looked into carers groups but they seem to be more for older people or young carers. I’m in my early 50s so don’t really fit into these groups plus I don’t have the time or the energy to fit anything like that into the day What do other people do with their respite time ? I don’t fancy going away by myself. My friends are all married Our holidays used to be hiring a cottage somewhere with our two dogs and going on long walks and pub lunches Not something to do on your own Can feel very much like life is passing me by Everything we had planned can’t be done now We were just waiting for the kids (I have two sons) to be off our hands. But we didn’t make it. I know I’m luckier than a lot of people and both of mine are still alive and with me for which I’m so grateful. I don’t feel like I need any advise or any help. Just having people who understand to chat to would be great and hearing how other people cope and what they do with any free time Do you go out with the person you care for and where to ? I try to take my husband out for lunch and coffees but it is hard work. Just getting parked where I live is hard even with the blue badge. If we’re invited anywhere of course I have to drive so no wine for me. He usually gets to tired and wants to go home after an hour. Feels like it’s hardly worth the effort of getting him changed and myself presentable! Then of course I have to get him sorted for bed The stroke took a lot of his personality as well so there’s no real conversation and definitely no sharing any worries or discussion about anything. Also as he can’t walk at all or even stand up without support, there are lots of places that say they’re wheelchair accessible but they’re not really. Not for someone who can’t move As a family we take up a lot of room as well so it’s easier for for anything social like Christmas to happen here as I’ve got the only house the wheelchairs can get in Anyway that’s more than enough about me. I look forward to hearing how you all cope x
Hi Claire,
Welcome to the forum.
I’m in the same age bracket as you. I juggle work and caring. I’d go doolally if I didn’t but juggling the two is difficult. I care for S, he has autism, related learning difficulties and has other health needs. We can go out together, but whereas you are limited by your hubby’s physical needs, we are limited by S’s autism. Nowhere too busy or noisy or hot. So, we tend do things off peak, when its quieter. He is very scared of dogs off leads too. On a Monday (except when he is on holiday and Bank holidays,) I in theory get a day off, though in practice I’m often sorting things out in connection with him.
I spend my day off (7 hours,) catching up on things ( sleep, chores, gardening etc) and when I can meet a friend for coffee, go for a walk etc Nothing very exciting, just normal stuff. I forget until a Monday, how easy it us to pop out or run an errand, when it’s just me. When I take S out, it’s more like a military operation.
Melly1
Hi melly1
Yes a military operation sums it up. And meeting friends for coffee and the normal stuff is what I miss. All the best to you and your family x