Hi I’m very new to this. My husband has had diabetes (and all the trimmings) for nearly 30 years.
We bumbled along quite nicely despite him being quite poorly with a complication called gastroparesis for nearly 18 years…and then in the last two months he has had a stroke which hospitalised him for 19 days, and then after one week out of hospital, he developed an ulcer on his right foot. Fast forward 72 hours and he had a below the knee amputation of his leg.
As you can imagine this has catapulted us into unknown territory. He only got out the hospital last Monday, and I already feel as though I’ve lived ten lifetimes. He is reliant on me for every single thing and while I am happy to do it (of course I am) it’s taking its toll. If I feel this exhausted and weary after one week, how am I going to cope with this long term.
Anyway that’s my backstory and the reason why I’m here.
He should NOT have been discharged without a proper care plan and a Carers Assessment!
He is entitled to free “disablement care” too.
Did anyone even do a pre discharge assessment of your home?
@Neeny…hi, welcome to the forum. You’ll find a lot of support here and a place where you can say what you feel without judgement. I’m sorry to hear your husband had a stroke and then also an amputation, that must be tough on you both. Do you have carers coming in to help you?
@Neeny
Hi there. i feel your pain as I have been in similar position since Feb. My husband had a stroke and is in a wheelchair and can only use one arm and one leg although he is trying to walk a few steps with a quad stick. His speech is also poor and due to all this he gets very depressed.
It is a massive shock isn’t it to go from quite a normal life to that of a full time carer. I have had just one day out since the stroke in Nov. So you will be pushing wheelchairs, helping with toileting, dressing, cutting up food, doing virtually everything like me.
@Neeny Hello and welcome from me.
Do you have a local ‘Support for Carers’? If so, might be worth phoning them as they may have local meetings. I agree you need to get something in place. Would adaptations to the home make it easier? Can your husband get around your home without help? Can you leave him alone? I agree you need some kind of Assessment and support. Caring is exhausting and it does sound as if it may have been a Dangerous Discharge.
Keep posting and you will find lots of support and empathy. But your local ‘Support for Carers’ might be a good initial contact as there may be help locally?
Hi thanks for the response. He was in hospital for just over 3 weeks. He was doing well (and still is). Occupational Therapy did a home visit and were happy to discharge him once he promised not to “bum” his way upstairs every night.
It’s just the suddenness of the whole thing. One week I’m lying at a pool celebrating my 60th and the next week my husband is getting his leg amputated.
Thanks so much Penny. You’re absolutely right it is the shock. We had been bumbling away quite nicely for nearly 20 years with hubbies various bits and pieces and then bam within 6 weeks our lives were just so different.
Hi. No no carers. Where we are carers don’t just come in to help. They either provide medication administration or personal care. Neither of which we need (or hubby wants).
I have no doubt that we’ll get there but it’s just a lot.
Thanks for this. I will look into a local Support for Carers Group.
At the moment hubby is transferring from bed and couch to his wheelchair. We are fortunate in that he’s able to live on one level as we’ve turned our conservatory into a bedroom.
Because of the other issues he had before the amputation he was quite weak and will need to build up his upper body strength.
He fell off the commode the day after he got out the hospital and that severely affected his confidence for a day or two but we seem to be getting there a bit better as the week has gone on.
I left him alone today to do some grocery shopping. It was a military operation getting things set up for him but he was fine when I got back.
@Neeny welcome to this group, it has been a huge help for me. You say you are happy to care for him, of course you are. That is fine but also know that you can come on here and have a little rant about how unfair it can all feel. I found being able to do that has helped me return to caring more easily.
You should get as much help as is possible to support you so that you remain healthy and can enjoy the time you have with your husband. You are too young to not take advantage of all that you are entitled to. Even in remote areas there must be some care to help you, when you need it.
Do reach out on here for support, understanding and advice
sending love to you both
This weekend was really difficult and the first time I actually questioned whether I’m up to the job.
Felt as though hubby was regressing. His transfer from the wheelchair to the couch and bed was less transfer and more throwing himself and it was really uncontrolled to the point where I feared he was going to do himself an injury. The lack of energy was causing frustration and just the nit picking (or I perceive it as nit picking…you know when you bring everything they need but you don’t have any more room in your hands to carry the water so you go back for it, and when you turn your back they say “you forgot the water”).
By Sunday night we were both exhausted.
But today has been much better. We agreed that he wasn’t going to just drift through each day, so today he was up and sorted early. He’s had breakfast and lunch. His transferring is much more controlled and he’s trying to work the chair himself today.
I don’t want to tempt fate or jinx it, but fingers crossed we might have found our “groove”.
Thank you for checking in. It’s so much appreciated.
We aren’t getting any package of care from the local authority. I’m doing the day to day stuff, but my two sons are really good and they’ve really stepped up to the plate for their dad which is lovely to see.
@Neeny you are doing well, he will be struggling I am sure. The nit-picking is so annoying and you can vent on here that it makes you angry, resentful etc. That makes it easier to say to them calmly that you are doing your best and please appreciate what you did bring not what isn’t there.
Glad that today was better, he will get stronger, but there will be dark days for both of you. You sound like you work well together. Remember to look after yourself though.
As to not getting any package of care, sadly you have to fight against the system that should be helping to get what you both deserve. Don’t take no for an answer, and keep a diary of all interactions is a tip I got early. Just 27th May I contacted XX to ask for XX they said XX. Because all the requests and calls can blend into one and you lose track.
sending hugs
@Tiredanne Totally agree with a diary to write things down. I use this as a record of when E had blood tests and what for and also medical appointments. If I do approach Adult Social Care then I will keep very detailed notes but see no point at the moment. Is is the non compliance that is my big problem with him.
It’s always risky not having anyone else involved, even if it’s just a cleaner an afternoon a week. Otherwise, no one would have a clue what to do if you were suddenly taken ill.
Hello everyone, Not sure if I’ve got this right as this my first post. I am a carer for my wife who has physical disabilities and she is also a carer for me as I have PTSD. She goes to carers group and is retired. I would normally be working full time but I’m currently on long term sick leave. This has been the situation for the past four years but until now I haven’t reached out for support as a carer so for now I’m happy just to join in the conversation and see how it goes!
Hi HH, Welcome to the forum. I’ve cared for a lot of family members in the last 50 years, now just my son with brain damage. He has his own flat 15 miles away, but lots of jobs are left for me. I’ve ended up with lots of my own health issues too, and find that tiredness is my biggest enemy now, but my head still thinks I’m Action Woman!
As both of you have health issues, do you have anyone to help you both?
Are you claiming all the benefits you are entitled to?
