Ignorance is bliss......or is it?

[mackerel boats]

I am in a situation where I know about my husband's diagnosed vascular dementia.I have been told he is in the "moderate" stage. He doesn't know this. I find myself feeling very disloyal when discussing the situation with the few people who I have told. One has the same situation with her husband and she is such good support as she has been there. Her wise words of advice are "do you want to be right or happy?".
As this is a new situation, it being diagnosed only in January, I am feeling that I should have done something sooner as I have nearly walked out on my marriage previously because of the aggressiveness (luckily, not physical) and irratability. I saw the Doctor several years ago about my husband's behaviour and my not able to accept it.
I am having to cope with this alone, as our 2 daughters live 200plus miles away. Luckily I have my own activites to get me away from home and luckily my husband encourages me to keep them up.

 

[Grannie G]

Hello, welcome to Talking Point [TP]

I know exactly what you mean about changes in behaviour. I too thought our marriage was on the rocks, as far back as 1999, when my husband seemed to undergo a change in personality which I just could not understand.

It wasn`t until 2005 he was diagnosed with Alzheimers.

He didn`t realize the significance of the diagnosis at first, and our son and I decided not to tell him. It wasn`t until months later when he became really distressed about himself, that I decided to tell him.

Although he was shocked and upset, he was also relieved in a way that there was a label for his symptoms. Again he didn`t have full insight, but we were able to talk about it between ourselves and it helped.

He still thinks he is cured, when he has a on good day, and I don`t disagree with him, so to some extent he is still in ignorance. But he does know he has Alzheimers, and whenever he has a bad lapse, we can say it is not his fault, it is the condition.

Those of us caring for partners with Alzheimers are very much alone. Our son lives a five minute walk away, but I still feel we should not take advantage. However I feel lucky he is `on call` and would be here in an emergency.

What has helped me the most is TP. Here I am never alone. I hope the same will apply to you. I know the support is here.

Take care xx

 

[gigi]

Hello Mackerel boats..welcome..

My husband has Alzheimers /Vascular Dementia..Although he "knows" he has Alzheimers he has no idea of the implications..and I don't tell him..there is no point.

It's been a rocky road for us, too. Long before the diagnosis I saw Eric as selfish and uncaring and unfeeling..now I know it wasn't his fault..it was the disease..but it is hard to accept.

It's also hard not to feel disloyal when you discuss it with others..but it is important for you to be able to do this..you are not being disloyal.
Your husband sounds as though he has some insight as he encourages you to have your own interests..

I can't tell you what to do..nobody can..we're all different but sharing the same problems..

Keep on talking to us..it does help..there's lots of support here..

Love Gigi xx

 

[mackerel boats]

thank you

Thank you for the replies.
It is now early morning. My husband has spent most of the day doing a jigsaw....mind you the weather has been bad. Am I selfish in thinking that as long as he is occupied and life is easier for me then that is the way forward?
He was on Lamotrigine (Lamictal)for his mood swings (prescribed by a Phychiatrist) and had a bad reaction to them. He was sleeping most of the time, and this went on so long that I had to call the Doctor in. We stopped the tablets, and blood tests were taken .The result was that he is borderline diabetic.He has since been prescribed Quetiapine and had a bad reaction after taking only one tablet. Needless to say we stopped them. The CPN visited yesterday but it is difficult to discuss anything too much with my husband there. He really seems oblivious to what is happening to him. I must admit that since his diagnosis I have changed my way of reacting to him. I used to take it personally, now I realise that it is the illness making him like he is (and was).
This is an excellent website. I am sure that I will find it a great help in the future.

 

[Grannie G]

. Am I selfish in thinking that as long as he is occupied and life is easier for me then that is the way forward?
.

I don`t think you are selfish at all. I think keeping sufferers occupied and aiming for as much peace as possible is the best way to manage the condition.

Those who achieve this should consider themselves `lucky`.

And if you have managed to stop taking the hassle personally, you are one clever woman.

 

[Carolynlott]

Dear Mackeral boats,

Hi and welcome. I understand your dilemma. Obviously everyone has to deal with this as they see fit. When my Dad was diagnosed I was very naive and had no experience at all with AD. I had suspected it for a long time - and even told my Mum that he had it. I was with them when his psychatrist called with the "news" and I have to say he was extremely insensitive. He was very nervous and basically blurted out that "you have got Alzheimer's Dementia". Blank look and silence from my Dad. Followed by "You do realise this is serious don't you. You now have a disability."

For the next couple of years while he was at home Dad would cut AD articles out of the newspaper and write Alzheimer (in a multitude of spellings) on scraps of paper. He knew what he had - he knew one of his neighbours "has got what I've got". I think this added to his depression.

He went into a care home in January and is now in his own world.

I suspected something was wrong with Mum about a year ago, and she has just been diagnosed officially last week. I emphasised to her psychiatrist (a different one) that it would devastate her to know she has AD. He visited on Friday and was wonderful with her. He did the assessment and said he would be able to give her something that may help her with finding words and her memory - she was thrilled, although also very upset. I suspect she knows what is wrong. But I think it is best that we don't say it. I think it is better for her (and for me dealign with her) as long as she has hope. I know there will come a time when she doesn't know anything anymore but for the time being things are OK. I'm so lucky that she isn't showing the signs that other people's relatives are of nastiness and accusations and aggression. She is so grateful for everything I do and is happy to let me do everything for her. She is no trouble at all.
Carolyn

 

[Nebiroth]

It's also possible that your Dad would either have no insight into his disability, or would simply deny it.

This is what my Dad does. He knows he has Alzheimers but has no idea of the implications of this. The most he will ever admit to is "trouble remembering some things". He has no insight into his other symptoms: changes in personality, delusions, confusion - all typical of dementia of course.

There's no point in challenging him, or pointing out his symptoms. He would simply deny them, or blame someone else, or claim that they were "normal". It would just cause distress all round. Always remember that people with dementia generally can't and won;t respond to reason, rationality or logic.

There are two alternatives: you can tell someone if you think they will understand and accept the implications, and undertake some planning, etc. But if you think they won;t understand, or deny, what is the point in telling someone they have an incurable, progressive condition?

Possibly one of the only mercies (and it is a small one) within dementia, is that the sufferer themselves often has no idea as to what is happening to them.

 

[mackerel boats]

Up and Down

Thank you for all the replies.
My emotions are all over the place. If a day goes well then I am pleased and then another day I can see another side. My husband (J) is so intense over jobs that need doing in the garden that he just has to do them no matter what.
I should also explain that for well over 8 years we have trouble with Neighbours From Hell. We took them to court 7 years ago and we won on all counts. They had to pay our court expenses (apparently most unusual). They didn't do as the Judge ordered them and when our solicitor wrote to them saying they faced contempt of court proceedings the male NFH came to our house and hit my husband. Because I didn't see it the Police could only give him a caution. But.... my husband has to bring them into nearly every conversation that we have. Mind you, we are still getting harassment from them but until I have an independent witness the Police cannot do anything. So I am having problems from all sides. As you can see I have 2 males with problems.
Grannie G, I don't always react in the correct way to my husband it just that now I am aware of the situation I try to react as to a trying child.
My replying to messages might be erratic as I have to do this on the quiet! No doubt, most of us are in the same boat!!!
Thanks to you all.