"smoth"ered"

[Practice]

My husband was diagnosed just over a year ago and I decided to retire. Shortly before I retired he "lost" his car which he said he left in a car park in the shopping centre near where we live. Despite our best efforts we were unable to find it and decided to claim off the insurance, and as I was retiring and we did not need two cars, agreed not to replace it. The car was subsequently found four months later in an entirely different location in a side street. It was undamaged.

Since my retirement he has become very "needy", getting very upset and confused if I go out, especially at night. As I have a very active social life and a wide circle of friends I am finding this very difficult and stressful, and am also becoming resentful. A few weeks ago I went to visit a friend and on my way home at around 12.45 am encountered him coming along the street! On Saturday I went to an afternoon tea function for an ex-colleague who was leaving. He insisted on running me into town and also wanted to come back and pick me up, but I said that I would get the bus as I didn't know when it would finish.

In returned home at 8.45 pm and both he and my car were missing. I tried to ring him on his mobile but it was switched off, as usual. He returned home about an hour later in a very confused and upset state, saying that he had felt unwell and had left the care in a housing estate in the next village and walked home. He also said that everyone was against him and he was thinking of committing suicide. . I walked with him to the place he said that he had left the car and despite extensive searching for more than an hour. could not find it. The next morning he said that he remembered now where he had left it, we went there, but again no sign.

I then enlisted the help of my brother in law and he ran me around the area and we found the car in a totally different estate from the one he said he left it in, in a different village.

I told him that I was not happy with him having the car unaccompanied. He is in total denial about the problem and says that "anyone can forget where they leave their car". I have asked him to go to the doctor as I feel his much worse now and we are getting no support from the specialist medical service, only from the G.P. However, he refuses to go as he "is getting better".

Today he asked for the car keys and I refused and he has now gone off in a strop saying he is going to buy a car and move out.

 

[Jess26]

Oh dear, this must be very difficult for you. As I was reading your post I was thinking "don't let him have the car keys" You have done the best thing for him by saying no.
I have no other suggestions, except to say stay firm on this issue and to make sure he doesn't have access to funds to buy another car

 

[Familyfor]

Maybe it would be wiser to get someone to stay in with him when you go out.
When my wife was at home I would never leaver her alone if I went out, for my peace of mind,and her own safety.
We don't have children or any nearby family, we were using a private care team with local professional carers that I set up for us , so I could arrange appropriate care beforehand if I needed to go out.
I don't know your personal circumstances but it sounds as though he is a worrying liability if left on his own .

 

[TinaT]

In the early stages of my husband's illness (Lewy Body Disease) he behaved in exactly the same manner. I'm astonished at the comparisons between what you have described and what I encountered.

My husband didn't forget where he had left the car, he forgot how to get home. I was still working and had to leave my mobile on because of the frequent phone calls from him telling me he was stuck in nearby towns because the car had broken down. We lived in Spain at the time (had been there many years) but husband didn't speak enough Spanish to call out the local village mechanic. Hence I kept my phone on for husband's calls.

The mechanic would come out to the car, find nothing wrong and drive back to our village with husband following in his car. It was enormously difficult to stop him from driving as we were in a tiny village and he would have been very isolated whilst I was at work.

Not long after this I had to give up work to be with him 24/7 and I did all the driving from then on. He never, ever admitted to forgetting how to get home and it was only years later when I was thinking about it that I realised he hadn't known how to find his way home.

I didn't have a very active social life and we spent most of our time together but on the occasions when it was someone's leaving party, or at Christmas Party work events etc., I would be enjoying my evening and one of my friends would say they had seen my husband outside. He had followed me! On one occasion I looked out the window of a restaurant to find his little face pressed up to the glass watching me. That decided me not to go to any more events without him.

I know that if I had paid a 'sitter' it would have had to be someone my husband already knew. He would not tolerate my leaving him at home with someone he didn't know. For the next two years I never left the house without he was with me and eventually he was deemed as needing specialist care but he never lost his obsession with needing my presence every day even in a care home.

Sorry not to be of much help but I really did want you to know that you are not alone. I hope others can come up with a better solution than I did for this very difficult problem.

xxTinaT

 

[Margaret938]

hello Smothered
I am sorry that you are finding it difficult to cope with your husband's diagnosis. You are not alone, and will find that all of us on Talking Point are trying to cope in one way or another. My husband has been in a CH since April, and I miss him every minute of everyday. You are so lucky to still have your husband at home to care for, I would give my all to have my darling husband here at home. We are possibly a lot older than you and your husband, George is 72 and I am 70. Our social life ceased when George became ill, and I never yearned to be away from him, in fact I hated even having to go to the hairdresser once in a blue moon for an hour, I could not get home quickly enough to see that he was alright. I am sorry that this has happened to you, but it is sort of nice that your husband wants to be with you all the time, he obviously feels very safe when he can see you and be with you.
I hope that I am not offending you by writing this, I only want to let you know how differently we all react to this awful illness.
Take care,
Margaret

 

[Rageddy Anne]

Hello Practice...

Oh how I feel for you, and completely understand how you feel smothered. The desperate clinging seems to be quite a common aspect of Dementia, and one that's very hard for those of us who have a life beyond the four walls of home. Somehow I hope you find a way to continue seeing your friends...they will be a lifeline and its healthy for you to remain in the world.

Sorry, it's rather a case of " Do as I say, not as I do". If you can. If someone is willing to spend time with your husband so that you can go out, and they can manage to keep him unworried by your absence, then do try your best to take advantage of that. I think it would be good for you both.

 

[Practice]

Thanks for all your replies. The thing is that when I am here or we have company, he acts completely normal so no-one really appreciates how bad things really are when I am alone with him. Even when he was well he was not happy with me going out with my friends although I always ignored his sulks and rows and went anyway. Now I cant help but think that despite the fact that he definitely has memory loss that some of this behaviour is due to his not wanting me to go out rather than a symptom of his dementia.
I dont have any family around me, I only have one son who is a hgh flyer in London and doesnt want to help - his answer is to get professional carer help, but of course my husband wont agree to this. My husband has a sister and brother who stay in the same village but who dont offer any practical help either, so I feel completely alone and getting depressed.

I am due t go to Milan on 4th October with my friends to celebrate my 70th birthday. I have been so looking forward to this and now feel so upset that I probably wont be able to go. It may sound very selfish but I feel that I am entitled to a life too, especiallly after having worked my entire life up until last year.

I would appreciate any comments you have regarding this dilemma. Should I go and leave him, should I insist on him going for some respite even if it distresses him or should I stay with him and give up going out altogether?

 

[Noorza]

I honestly think that for you to be well enough to care for him in the long term that you need to have your own respite for a short while. I would say for your sake, for his sake, take the break, it's a way for you to recharge your batteries.

 

[Varandas]

having a life

I feel for you. in a couple of weeks to celebrate your B'day and.... In Milan! You deserve it girl.
It is very difficult to go out and enjoy the few moments when life is 'normal', and remember that a little break is essential in order to care and not 'resent' this dreadful illness. How can one not resent AD? It is impossible but we have to live with it and cannot change it.
Whatever you decide; you'll find friends here on TP that have been through similar situation and I am sending strength and positive thoughts.
Courage!

 

[Beret]

Thanks for all your replies. The thing is that when I am here or we have company, he acts completely normal so no-one really appreciates how bad things really are when I am alone with him. Even when he was well he was not happy with me going out with my friends although I always ignored his sulks and rows and went anyway. Now I cant help but think that despite the fact that he definitely has memory loss that some of this behaviour is due to his not wanting me to go out rather than a symptom of his dementia.
I dont have any family around me, I only have one son who is a hgh flyer in London and doesnt want to help - his answer is to get professional carer help, but of course my husband wont agree to this. My husband has a sister and brother who stay in the same village but who dont offer any practical help either, so I feel completely alone and getting depressed.

I am due t go to Milan on 4th October with my friends to celebrate my 70th birthday. I have been so looking forward to this and now feel so upset that I probably wont be able to go. It may sound very selfish but I feel that I am entitled to a life too, especiallly after having worked my entire life up until last year.

I would appreciate any comments you have regarding this dilemma. Should I go and leave him, should I insist on him going for some respite even if it distresses him or should I stay with him and give up going out altogether?

Sorry to that you have such a dilemma. I was very lucky to have friends and family to help out and give me some respite when my wife was being cared for at home. Does your husband have any friends that could pitch in, even for a couple of hours to keep an eye on him while you're away? I know our children and even some of my wife's siblings couldn't help or didn't have the skills to deal with people with dementia. Can your GP recommend a service that could help?

 

[annais]

Dear Practice
I completely empathize with you. Dealing with this dementia is utterly exhausting. Like you I am on my own. No family near for help and support. I tend to agree with the theory that the negative behavior in ones personality is exacerbated in this condition. Our difficulty is to ignore it, which is not easy. It is so very important for you to have a break, a least some free time in the week. Fortunately I can leave my husband for a few hours of an evening twice a week while I Line Dance! Very,very therapeutic. Obviously there will become a time when I cannot leave him, so will take him to watch!
Under the circumstance, and having booked your holiday, could you not ask your sister and brother-in-law to keep an eye on him this one time.
Best Wishes
Annais



The thing is that when I am here or we have company, he acts completely normal so no-one really appreciates how bad things really are when I am alone with him. Even when he was well he was not happy with me going out with my friends although I always ignored his sulks and rows and went anyway. Now I cant help but think that despite the fact that he definitely has memory loss that some of this behaviour is due to his not wanting me to go out rather than a symptom of his dementia.
I dont have any family around me, I only have one son who is a hgh flyer in London and doesnt want to help - his answer is to get professional carer help, but of course my husband wont agree to this. My husband has a sister and brother who stay in the same village but who dont offer any practical help either, so I feel completely alone and getting depressed.

I am due t go to Milan on 4th October with my friends to celebrate my 70th birthday. I have been so looking forward to this and now feel so upset that I probably wont be able to go. It may sound very selfish but I feel that I am entitled to a life too, especiallly after having worked my entire life up until last year.

I would appreciate any comments you have regarding this dilemma. Should I go and leave him, should I insist on him going for some respite even if it distresses him or should I stay with him and give up going out altogether?[/QUOTE]