@Christounette
Welcome
I have an understanding of how you feel. My lovely late husband suffered strokes vascular dementia and other health issues…He was in a nursing home. His consultant wouldn’t allow him home for his safeguarding and mine.
You are going through what I call ambiguous grief, grieving for the man he was, and for the life you hoped to continue with him. I know I went through this. It took me a while to think of the happy times we had. Yes , dreadful sleepless nights, the guilt, wondering what was happening at the home. Eventually I classed myself as his care manager. If anything wasn’t right in my eyes ( both my daughters felt the same way) we would be speaking to the staff of the manager. Sadly however good a home is, it won’t be your home your ways etc. It took my husband a long time to settle but he did eventually. It’s very heartbreaking and emotional ( lonely too even with my very supportive family). Only you can make the decision as to whether you care for your husband at home, but…it really will affect your own well being in my humble opinion,.Sadly your husband will deteriorate. Consider the needs for him not the wants.
Do you take him treats like a nice cake or similar? My husband used to love that.
I’m not sure my post will help you, but my heart goes out to you.
Oh and I befriended a couple of people who visited their loved ones in the home. It really helped. Sometimes afterwards we would go for a cuppa and a snack together. I’m still in touch.
Thank you for your very kind message Pet66
My husband doesn’t even seem to have a consultant so I don’t know who to talk to about him coming home
If we had a consultant for him , I would be very interested to have his opinion
I do take him treats yes and I have also made friends with a lovely man who goes to see his mother every day
But the loneliness at home is crushing
Your post does help because it is kind and I never say no to kindness
At the moment, I tend to think my husband has plateaued and will not get worse but I am probably wrong
The problem is there is very little support and information from the medical profession
Anyway , thank you very much , I do appreciate
Do you live in an area where they have Admiral nurses?They specialise in giving support to families who have a loved one with dementia (all types).
Did the staff at the home ask you about his likes and dislikes, about his work life?
My husband did not like them doing anything without them explaining what was happening, he certainly didn’t like them bounding into his room without knocking the door even if it was open. I had a note put on the door to remind them. They soon realised it was easier for them rather than him being verbally aggressive. It is their job to find out about the person.
If you are very unhappy with the home, can you look for a more efficient one?
Maybe start with a few things you haven’t been able to do whilst caring. Simple things like going to the garden centre and having a coffee and mince pie, or having a session at the hairdresser and or beautician, going to the cinema? A trip on a bus to somewhere different. Ideally NEW memories, not places you went to together. I always have the TV or CD player on at home. I love sewing so I went on a course, and met some new people. You could do a day trip by coach.
Thanks bowlingbun
I will try some of these ideas
I was in the same situation in 2012. I had put my Mum into a nursing home for a trial because she was irritable at home in my care. But she didn’t settle and I noted the same problems as you with the care provided. (When I took my Mum out for a walk other residents were begging me to take them out also!) After 8 months I took her home, against the opposition of Social Work,
but they had no legal right to stop me.
It was hard work but I didn’t regret it. Fortunately my Mum was still mobile. Keeping her mobile helped with incontinence. There were a few “messy” incidents which required a lot of cleaning up. I was very patient and resisted the temptation to blame her. We got out every day for a walk and/or bus ride. She was still irritable at times but happier on the whole.
I did not need agency carers to come in.
More than 1 year later she was recovering in hospital from a fractured hip after a fall at home. Hospital Physiotherapists were unable to get her walking again but refused my help. Social Work wanted her to go into a nursing home but when no progress was made I took her home again, against their advice. I got her walking and climbing stairs immediately. Agency carers came in mornings and evenings to dress/undress, wash and put her to bed. But we didn’t need them and often dispensed with their services.
My biggest learning point was what to do if she fell, because it was while trying to lift her back onto her feet after a fall that the fracture occurred. The Crisis Care Team would have come out to get her back onto her feet safely.
Hello Barry
I have read your post with much interest
I am convinced that my husband has deteriorated since he’s been in the care home
I think I am a bit scared of social services and the way they tell me I wouldn’t cope etc
But reading your post , I now feel bad I haven’t tried harder
Yes my husband is not mobile now but I wonder if it would be possible for him to regain some mobility
I wish I had done what you did
What would you advise me to do now ?
Your husband needs more care than my mum needed. But I think it’s still worth a try. It will require some planning.
First I suggest fostering a partnership with someone sympathetic within the Social Work Department, someone willing to challenge the “official line”. (I did not do this!) Young social workers might be best - still fired up with good intentions. Ask them for help in planning to get your husband home.
Second work on improving your husband’s mobility (and reducing his needs) in the Care Home. Can he get physiotherapy? Occupational therapy? Ask about “strength and balance training.” Look for ways to get him physically active - eg seated exercises, standing and sitting. At the very least get him outside for a wheelchair ride - fresh air, stimulating sights and sounds (especially dogs and cats!), and the jostling motion will stimulate his muscles. Nearby where I live is a bike library which specialises in tandem rides so he could sit beside you and pedal with you while you steer.
It will be a full time job (24/7!) so ditch any other work you have - you will have plenty of time when he’s gone. Take one day at a time. Spend as much time as you can in the Care Home getting him fitter to leave. I went every 2nd day, arriving 10am and leaving 10 or even 11pm! Quite often I ate meals there (free!). That was eye-opening because it showed the staff were over-feeding my mum to get her weight up. Create other opportunities for getting him back into the community gradually, using the Care Home as a base to return to - eg visiting dementia cafes and places that interest him, riding local buses, visiting the supermarket or shopping centre. If he attended any clubs, try to get him back to them - if he is still interested.
When you think he’s ready try an overnight stay at home. Then a two-night stay. This will show you what extra help you need. Ask for an Occupational Therapist to assess his safety in the home and to recommend adaptations such as hand rails, ramp up to outside doors, stair gates if you have stairs.
If it doesn’t work out at home you can always leave him in the Care Home and maximise your visits and outings.
Gather whatever helpers you can - family, friends, neighbours - who can give you occasional help with washing and dressing, mobilising, or sitting with him while you go shopping or have a couple of hours to yourself.
Ask about getting a Day Centre placement. Often they will send a minibus to pick him up and bring him back. Self Directed Support? (That’s something we have in Scotland.) Home cleaners are quite cheap and it gives you more time to yourself (or to attend to your husband). I found the most difficult part was finding time for housework and having a shower or even going to the toilet! Even answering the door can be a problem if your LO is not settled.
Be prepared to ditch your schedule and adapt to your husband’s clock. Snatch a nap when he does. Go for walks when he wants - even it is at 4am! “Sundowning” is actually a great help because it provides a natural opportunity to keep him active. Be prepared to let him help with washing up or baking (eg stirring cake mixture, kneading or rolling pastry) even if he breaks things or makes a mess. (I failed this one). Keep him engaged mentally - eg replacing cutlery in the drawer, arranging tins in the cupboard, sorting coins or buttons or jigsaw pieces.
You are right to fear Social Work. Behind my story was a running legal battle which ended badly with my mother’s death in hospital in February 2016. On their own they can be challenged quite easily, but when they get a medical opinion to back them up, it is almost impossible to get anybody to listen to what you have to say.
Thank you very much for all the advice and practical tips
I certainly have my work cut out but as you say , it’s still worth a try
Let’s hope it works out eventually
Thank you so much
Remember that we are all different. It’s entirely your choice what you can and cannot do. My husband had a massive heart attack and died in his sleep when he was 58. We had been caring for all four disabled parents and disabled son. None of us are invincible.