Advice wanted

Until recently I was and still am a Carer for my husband who has Parkinsons/Dementia and Type 2 Diabetes. In August to middle of October he was in hospital for 9 weeks (Meant to be one night) but while waiting for a Ward to go too was in the company of a Covid 19 patient and spent 10days up until 2nd Sept in Isolation. Following that he was in hospital unable to come home in total for 9 weeks due to there being lack of carers available. This caused havoc with his dementia and when he returned home all was well with carers coming in to help me take care of him. However, roundabout the 11th November he collapsed and was taken into hospital where he still is. The problem I have is that because he can no longer walk and I am now 81 I cannot not take care of him at home I have problems myself and they are trying to find a care home for him.

He asks me every day I visit him when he can return home and treats me quite nastily when I say I cannot take him home. HOW am I going to tell him that HE cannot come home??? I am obviously extremely worried and frequently upset about this problem. ANY ADVICE PLEASE??

Hello Jackie Hardy 1234
I have read your post a couple of times and thinking how I could reply to what is clearly a very difficult situation. The first thing is that you have already made a hard decision in recognising that you can no longer care for your husband at home. That is an honest and brave decision and no-one should criticise you for that. Even though you know that, I suspect what you are grappling with most is guilt and the emotional fallout at seeing what is happening to your husband. That it is an entirely a normal, reaction doesn’t make it any easier and guilt can be terribly destructive. I know I’m probably not saying anything you don’t know in your heart of hearts but sometimes seeing it in black and white from someone who only knows what you’ve written can help you accept you are doing the right thing. So I am going to be very clear here.
From what you’ve written I woul entirely agree that your husband needs residential care.
The man you are seeing now is not the man you married. He has dementia. When he is nasty to you it is his dementia that is causing this (I am of course assuming this is not something he would have done before)
Most people with dementia don’t take easily to change but once they get used to their new surroundings many settle into their new routines.
He has been in hospital a long time and it is likely he has become institutionalised to some extent.

As to what you can do, I would suggest you need help to tell your husband he cannot come home. Does he have a social worker ? If not ask to be referred. Many hospitals have social workers on site. He or she should be able to work with you on how and what to tell him and be with you at such times. If necessary they can take a lead in those conversations and help in finding him a place. Use them, you don’t have to, nor should you do this alone.

I would also suggest that if your husband gets nasty towards you simply tell him you came to see him but if he is not going to talk to you properly you may as well go home and if he persists leave. You don’t have to listen to his abuse or anger just because you’re married. You will probably feel a failure or that you are letting him down… I can tell you categorically you are not. You are trying to do what’s best for you both, and you’re having to do that without him.

If I might relate the story of one lady I knew. Her husband had dementia and he became physically and verbally abusive. She couldn’t manage his care but resisted residential care because her marriage vows said in sickness and in health. it was pointed out it didn’t say in sickness and in health at home. He went into residential care. She visited every day. When he was having a good day she stayed and helped with his care on days when he was abusive towards her she left it to the care home.

You’ve done the hard part. You’ve made the decision. Be brave and ask for help in telling him and when he’s nasty towards you you can choose to stay or go don’t just put up with it.

I hope this has helped a bit. I think you are a remarkable lady and your husband is lucky to have you on his side.

My best wishes to you both.

forgot to can ring the helpline and talk to someone too. They are very good 0808 800 0303

Many thanks for your reply Tot, you are so right and nearly word for word have gone through exactly what I have thought and gone through. I do in actuall fact do leave him when his dementia is bad.
I am now experiencing a problem and intend trying to write a letter to the Ward Sister. My husband had his medication changed and for the first few days. was like a different man and I went home much happier. However, what I have discovered is his medication is not being given to him at the right times ie 9.30 am, 1.30pm, 5.30pm and 9.30pm! When I visited last Thursday he was in a bad place , he hadn’t been washed and dressed and did not have breakfast, they said he refused to be washed etc., I got there at 12.30 and while there a nurse brought some medication and apologised for the lateness, this turned out to be the 9.30am tablets and an hour later @ 1.30pm should have had his 2nd dose. I am well aware as I have been told over the years it is better for the medication to be given at the correct time.
I am well aware of the shortage of staff etc., but how can I get this through how important the timing is.
My apologies for this long reply to your very helpful response.
Jackie Hardy

Hello again maybe this will help you can download it or get a paper copy. Getting medication on time in hospital is a major problem. Perhaps you could highlight the relevant page and give them a copy.
Good luck and let us know how you are getting on.

Tot, are you able to give me instructions on how to print the details off so I can take a copy in to the hospital?

My brother is 75 and has parkinsons and Dementia and both have progressed very quickly I made the decision to put him in a home as his power of attorney as his partner of 80 wasn’t coping with him very well.
Having one illness is bad enough but both is heartbreaking. My brother has never really asked to come home but on the few occasions he has, I haven’t said you can’t or anything negative. I have always responded with “let’s get you back on your feet first or we need to get you stronger and then quickly change the subject to “lunch looks.good” or she seems a nice carer”, don’t reply with a negative and don’t ask ,"what did you have for lunch or what’s that carer name remember things don’t sit in their brain like ours. I’m not sure how far advanced your hubbie is but you will need to learn how to recommunicate with him. Remember they can get aggressive and nasty and say hurtful things, you have to learn to ignore things said remember it isn’t him speaking but the illness. Good luck x

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excellent advice Stouty.