Accepting there is a problem

[suem]

After much soul searching and agony I have had to admit I can no longer look after my husband. I have cared for him for 14 years with Parkinson's and Lewy body dementia. We have been together 32 years and I wish like many on TP I could care for him no matter how he was...but I can't and it has been hard as a wife to admit this.

We have loads of support from GP, social services,CPN, specialist etc but I have been saying to them for sometime everything is fine when it's not.

The problem is that my husband refuses to admit that things are bad. He realises he has problems...but not how significant they are. He thinks I'm the one with the problem. He is reasonably aware which perhaps makes it harder than someone that has lost all function.

The GP says he should go into care. But it took 3 years for him to agree to a sitter 3 hours a week so I could go out. I have had 3 days break in 2 years when his son's looked after him. But they refuse as they can't manage him for even a short period. All the help is available to us, he won't allow it.

He could have respite but he flatly refuses. I have tried to explain that if I had a break things might be better and if anything happened to me he would not have a choice in the matter and would have to go into care. All of which he ignores.

I have explained these reservations to the GP and she has asked the psychiatrist to access him and see if he can put my point of view.

But if he still refuses to go into care even for a short period..what can I do?
Has anyone else overcome this problem?

thanks

 

[KenC]

Hi suem,
I can understand how you must feel, although my wife is my carer, I am terrified of things getting out of hand. There are times when I realise that I am not myself and it is difficult. I have met many people with the same illness as your husband and realise that they can be very difficult to get through to at times.
I think like many others and possibly your husband is probably the same, we are frightened of loosing control over our lives, sometimes frightened of admitting that it is time to think of the other partner, and even frightened of admitting that there is a problem with yourself. I've met many men who refuse to admit they have a problem, its always the wife or the family.
I feel that carers must go through absolute hell at times, trying time and time again to succeed knowing full well that sooner or later they have to say enough is enough. I think like you, the Doctors will know when its time for you to step back before you end up being ill yourself.
I hope you can get things sorted out.

Best wishes

kenc

 

[Lucille]

I think like many others and possibly your husband is probably the same, we are frightened of loosing control over our lives, sometimes frightened of admitting that it is time to think of the other partner, and even frightened of admitting that there is a problem with yourself. I've met many men who refuse to admit they have a problem, its always the wife or the family.
Best wishes

kenc

Dear Suem and KenC
Oh boy! I thought your post, Sue and your quote above, Ken (by the way, it's not just men who refuse to accept they have a problem) were particularly apt. Have just had one ding dong with mum who alternates between accepting she has a problem (YES!) and then saying absolutely the opposite and blaming me for everything since the rise and fall of the Third Reich!

Sue, I do feel for you. You sound like you have a very good support team from the professionals who are on your side. Perhaps now is the time to let them step in as you suggest in your penultimate para. You have done as much as anyone can be expected to do by the sounds of it and with little help from family. For your own mental health and that of your hubby ... are these flashes of lucidity "he realises he has a problem" a godsend or an encumbrance? Just when you think you know where you are, the disease rears its very ugly head.

Let us know the outcome and in the meantime will be thinking about you.

 

[Helena]

Sue

I believe the problem is much to do with the Lewy Body element of the disease
Its also typical of Vascular Dementia too because my Mother insisted that everyone else was mad not her

If you have been caring for your husband for 14 years thats a very long time and i understood that Lewy Body Disease had a limit of 15 years

Have you joined the Yahoo group for Lewy Body Disease

They may have ideas of how you get through to a patient like your husband

I do know its a total roller coaster disease and you have my immense sympathy and admiration

Just a couple of hours coping with my Mother was exhausting i could not have coped as you are doing

 

[Grannie G]

Dear Sue, Would your son go to the GP with you to endorse your exhaustion. If he tells the GP he cannot cope with his father for a few hours, it would surely re-inforce how much it is taking out of you, as his permanent carer.

I don`t know much about Lewy Bodies, only what I`ve learnt from TP, but my husband with Alzheimers yo-yos between accepting his condition and rejecting it. When he feels bad, he wants help, but when he has a good day, or even a good hour, he insists he is cured, the medication has worked and I am a drama queen.

!4 years is a very long time to be a full time carer. There must be some better respite for you than 3 hours weekly.

Has your husband got to the stage yet where his word can`t be accepted as either responsible or reliable? My son has suggested to me that his dad is at a stage where discussion is not an option. Might this be true for you too.

Please don`t let the guilt complex get in the way of logical thinking. Sylvia