Advice wanted

Living with Parkinson's Carers, friends and family
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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??

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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.
Tot

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

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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

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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

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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?

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Hi
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

1 Like
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excellent advice Stouty.

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Stouty I came on the website for some questions I have had building up and your message which was back in Dec has answered some of them. My husband who is 83 and I 81 is now in a care home too, a decision I had to make after he went into hospital back in early November last year he then went into a care home, ironically on December 21. He can no longer walk and also like your brother has both Parkinsons and dementia. I am like a creaking gate having knee and shoulder problems after taking care of him alone for so long and putting off the decision to get him into a care home. My problem now is after 57 years married it is painful to kind of end our marriage.

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Stouty sorry to continue…
I visit my husband nearly every other day and that too is getting harder. Constantly talking about me with another man in tow, enjoying myself because I can at least go home etc. I am finding it difficult more and more because he doesn’t make visits easy when I decide after nearly 3 hrs to leave and he becomes nasty. It is getting worse and I am getting more upset when I leave. My family, of which I have a good one thank the Lord, tell me to try to ignore it, but it is hard. I appreciate what you have said and will try my best to take on board the awkward questions, they sounds as if they will help any ideas please what to say when I leave.

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Hi JackieHardy,
First I would like to say I am not qualified to give advise and what I advise is neither right or wrong and it is only what I have seen or encountered from my brother in the same situation.
Putting your husband into a care home was probably the best thing for you both, MY brother too went into hospital after a fall and then we decided the best care would be a carehome as we know his partner couldnt cope, we look at it as a sign that things would get more difficult as the illness progressed, dont feel guilty, you have done your best and no one can ask for anything more, the specialist care he needs, can only be provided by specialist people. At the end of the day when you are tired or end up in hospital yourself , your no good to him then and then there will be no choice,as least you can concentrate on yourself, and be you when you visit, this is all stuff we told my brother partner, its not ending a marriage, your having an extensive break, something we all deserve especially after 57 years of marriage.
Can I say dont take it personally about you with another man, getting on with life,and being able to go home or even when he gets nasty, my brother partner goes through the same thing, she takes it to heart, what you have to try and remember its not them, its the illness, like someone has taken over them. Does he apologise after he has had an outburst.? My brother has been nasty to me and I just say not angry but hey Ive come to see you, please dont speak to me like that, yes try and ignore it,change the subject, like its nice outside, and talk about things in the past, dont say do you remember but ITS NICE OUTSIDE, IT WAS WHEN WE WENT TO BOURNEMOUTH or whereever! Ask him is there anything you can get him, or if he asks you to do something for him, then just say I sort it, Just go along with the conversation dont, correct him or say things like dont be silly, in their world it really is happening, if he talks about a person and he says look at her over there,dont say , there is no one there, but say dont worry about her or what she is doing, what about you, did you have orange juice for breakfast. Dont say what did you have? Upon leaving I would just say right Im off now, got things to do, it be your lunch soon, then your probably have a sleep, Just say see you soon, as tomorrow doesnt exist in their world, a hug no tears, as hard as it is just go.

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thank you sorry just seen your reply, I havent been on the forum for a while.

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Hello again
I have just gone back and read again the earlier posts and I’ve just realised I didn’t follow up on this for which I apologise . It was when you mentioned your husband was not getting his medication on time and wondered if this had been sorted out. I am not saying your situation will suddenly get better but it certainly won’t be helping if not.
I would also agree with Stouty’s last post you have done and continue to do the best you can in a very difficult circumstance. It is often said that dementia brings two bereavements, one for the person you knew and loved but is no longer the person with you now and a second bereavement when the person physically dies. The time between the two can create untold guilt and confused feelings because on the one hand you want to be there for that person as you always have been on the other apart from physically being the person you knew they might as well be a stranger. It is not an easy thing to admit because it can make you feel you are being disloyal, hard hearted, uncaring and an altogether horrible person, you may feel resentment even wish they were dead and then hate yourself for even thinking that way. If you can however accept this reality and all the emotion that goes with it, it may help you cope a little better or at least not feel so bad. Medication issues apart I hope you are satisfied he is properly cared for in the home. His needs are being met. Now you must do what’s right for you because you have a life too.
Tot

1 Like
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To Tot and Stouty

Thankyou both for your responses. It has helped me no end to be able to unburden myself and get things off y chest.

I will try my hardest to take on board what you both have said. Thankyou so much XX