My husband Brian has now been in a nursing home for over a year. It has been a long time since I was on here, but he had a stroke four years ago after twenty years of ill health due to heart disease. I have been caring for him since his first heart attack at 50 when he had a triple bypass and had to give up work. Life was difficult then, he was very angry at this happening to him and not easy to live with, thank heavens I was able to escape to my job in a care home that I loved. His health wasn’t good and our time was taken up with emergency visits to hospitals in the middle of the night.
Four years ago he had a stroke, fortunately at home, and I was able to summon help immediately. He was left with a paralised left arm and a very weak left leg. He was able to shuffle with the aid of a stick and was eventually allowed home. We then had three years of having carers in twice a day, twenty minutes in the morning to get him upand ten minutes in the evening to get him to bed. He had to have a hospital bed to aid the carers get him out of bed he has no body strength.
I was the one who had to deal with him on my own, day and night, as my family do not live near us. Anyway his health deteriorated and he became doubly incontinent, with me having to call out emergency carers during the night and day when he soiled himself as latterly, my back had been so damaged trying to lift him, that I could no longer manage.
It was decided by the social work department that it was now time for him to go into a nursing home for 24 hour care. We waited six months but eventually were offered place in a nursing home in the area. The staff are lovely, he has his own room with ensuite shower/toilet, three main meals a day (more than I eat). The main problem is that the majority of other residents on his wing have dementia and he is in sound mind but his body has given up. He won’t even make the effort to talk to them, he resents being there among them. I visit three times a week, I give myself the weekend off to have my grandchildren to stay with me, something I couldn’t do when he was at home as I could be dealing with poo and pee at any time. Every time I visit he says he wants to come home. He does nothing but moan how terrible it is being in the home. He has now started refusing to go to the dining room for his meals and has them in his room. When he was at home he stayed in his room all day, lying on top of his bed, watching tv as he fell very easily. Latterly he had district nurses coming in each day as well as the carers and my house was no longer my own and it stressed me so much that my blood pressure was up to 200 and my doctor pressured the social worker to find a place for my husband.
Sorry this has gone on so long but I am panicking that he could demand to come home. I have power of attorney over his health and finances but he is of sound mind at the moment. I like visiting him at the home as we can talk as husband and wife again. Previously I looked on myself as his carer and loathed having to see to his bodily functions. I can’t go down that road again.
Hi Irene,
welcome back. We wondered how you were.
It’s sounds like hubby is receiving excellent care.
It’s a shame he is the dementia unit. Perhaps there is a voluntary group that could provide a volunteer to visit and befriend him and provide some mental stimulation? Does he get a chance to chat to some of the staff?
Lovely that you are able to have the Grandchildren to stay again, beneficial for both them and you.
Melly1
He could demand to come home - but who will look after him 24 hours per day?
You don’t want to, and that’s completely understandable and acceptable imo.
You can’t be forced to care for him if you don’t want to, if you’ve already worked in the care industry you must surely know that.
It’s up to Social Services to work something out in the event that he does come home, but you’ll have to be very firm with them that you’re not doing it.
There could be costs involved for any care provided, depending on what savings your husband has.
Hello Irene
I too have thought of you many times. I remember the anxiety and stress you had and you were ill.
Is Brian showing any signs of dementia,? Am I mistaken in thinking he was when at home? He sounds depressed, and maybe needs a mild anti depressant. My hubby went through that before the dementia declined. Anti depressant helped.
You know in your heart you can’t go back to caring full time for him. It would be unsafe for you both if he were to return home to you. I doubt the home would be encouraging him to return, and your saving grace is the fact that he is unable to care for himself, and you are unable to care for him.
As Melly said, maybe the home can provide some befriender.
I’m so sorry its like this for you, but you will be strong I’m sure. Remember the words, unsafe discharge!
Hi Irene,
What’s the Home manager like? Would there be any mileage in explaining your concerns to them and seeing if it would be possible to move your husband to another wing or perhaps even to take him to a different ‘lounge area’ where there might be people he could talk to? I understand his frustration but presumably he needs to be near the nurses’ station because of his physical needs? Maybe you will have to explore different Homes to see whether there is somewhere else where he would be more comfortable with the company.
His coming home for you to look after is not the answer. If he has mental capacity does he not understand that you cannot look after him at home? You just can’t, you are far too fragile, health wise, yourself. Or does he think that being at home will suddenly make him better? Do you think this refusal to even try is a sort of going on strike in an effort to force you to have him home?
Whatever happens don’t do it. You will be ill yourself and he’ll end up back in a Home anyway.
As you have worked in a Care Home, you know how things work. Are there any ‘buttons’ you know to push to get them to consider his mental health as well as the physical? What about the Home you worked in? Any possibilities there?
KR
Hi all, thanks for your advice. Elaine, you are correct in thinking he would be doing this to make me feel guilty. He has always been a very self centered man. He has had ill health for the past twenty three years since he had to have a heart bypass at aged 50. He was forced to give up working and I have to work till I was 61 to support us, trying to fit in hospital appts round my working hours. Fortunately because I worked in the caring industry, my boss was very supportive. Many a night I had to rush him to hospital about three in the morning when he was having chest pains.
He has shows absolutely no tolerance for the other residents, refusing to understand that they have dementia and are not responsible for their actions. I always chat to the ones I know are capable of recognising me but he never makes the effort to interact with them.
He has a male carer who he gets on well with but unfortunately when the man is off ill or on holiday, my husband gets depressed. The carer has been off for the past two weeks so possibly this has caused the moodiness.
The staff know he is grumpy and I have told them that this is his normal mood even before the stroke. He was never an easy person to live with and my children were always aware of this. How I have managed to stay married to him for 53 years, I’ll never know, probably because in those days a woman had no where else to go and no finances either. Me handling our finances now really angers him. It took me months to get the bank accounts sorted but I can now do online banking and am managing fine.
Sorry for rambling on so much but I feel it has helped to get it out my system.
Irene,
I remember your posts well, you endured so much. Well done for sorting out all the financial issues too. Sadly, it sounds as if your husband is incapable of true happiness. Maybe always was?
Be sure to make some happy memories for yourself now.
I may still be battling with Social Services over my son’s care, but I know that whatever happens I will be in Greece soon.
When I can’t sleep very well I sew dresses/tops for my Greek holidays. (I usually wear jeans and T shirt at a home, my two weeks of dresses is a real treat). When we were first married, living in outback Australia, I used to make a blouse on Saturday and a dress on Sunday just to pass the time away.
In the last 20 “busy years” I never had time to sew, it’s a real joy now.
I’m not suggesting you take up sewing (!) but I do hope that you are now seeking some sort of happiness by doing something that pleases you, that you do for yourself, and no one else.
Hi Bowlingbun,. I have started knitting again after stopping when my children wouldn’t wear handknits any more. Over the past few weeks I have discovered my love for it once more and am enjoying trying more advanced patterns. I have more quiet time now that I am no longer at his beck and call all day. I love having the house to myself with no carers to disturb me.
When he went into the home last year I set about decorating the house myself, using colour on the walls instead of the magnolia I had put up with for decades. Now I feel it is really mine and I can enjoy being here.
So pleased to hear that you are knitting again. I always found the rhythm of knitting very soothing, but prefer dressmaking as it’s the only way I can get things to fit properly.
I’m also in the process of changing things in the house, it’s taken me years to realise that it’s mine. I love most of it, but one carpet has always annoyed me. It’s going to be taken up tomorrow for the plumber to do some work before redecorating, and I’m going to treat myself to a new one.
Irene and BB
I’m in the process of refurbishment. Very slowly. Although when I think its more than I ever could have imagined. Loads to do. Am learning about the garden. The best way to sort containers. Sometimes I feel overwhelmed still, but have to tell myself its worth doing. Its not 3months yet since I lost hubby, so am allowing the ebbs and flows. Starting to think of what I can do now, and have enjoyed day trips with a friend with more to come.
I can’t sew or knit well, but I like crochet. Was doing some last school holiday - you have reminded me to dig it out and do some more. Thank you. 
My house desperately needs decorating, new carpets etc but not easy with S. He struggles with disruption and change. I have decided I need to declutter first - that will make decorating easier. Decluttering isn’t going to be quick. But I made good progress last holiday - have to tell myself - I CAN get it done!
Melly1
Brian has a hospital appointment on Tuesday. He has been taking seizures since the end of May. The Nurse Practitioner from the medical centre has been in to see him umpteen times but unless you actually see him taking them, it’s hard for her to diagnose. The doctor has finally decided to refer him to the One Stop Frail Elderly unit at our local hospital.
I was very reluctant to take him by myself in my car as when he has a seizure, his right arm thrashes about, not a good idea when you are driving on the motorway. By chance, my daughter, who works in her local school, is still on holiday next week so we will all go in her car. He will need a wheelchair at the other enc so it will be easier with two of us.
I took my tablet into the nursing home with me yesterday to see if I could manage to video him having a fit in order to show the hospital doctors. I managed to get the second fit on video which lasted for about six minutes - the longest he has ever been unresponsive. Hopefully it will be of help to them.
HI Irene,
glad your daughter is able to assist with the hospital appointment, though surprised the home haven’t arranged hospital transport for Brian.
The video clip should really assist the consultant to make a diagnosis, I took video clips of S having a seizure to the hospital many years ago and was finally taken seriously and believed that S was having seizures.
Melly1