Conundrum

[muse]

Hi

I'm new to this forum. I've read some of the illustrative threads in which I recognised some of my problems, so I'm hopeful that I might get some helpful replies (there's a lot of experience out there).

By way of introduction: I'm 53 and the now full-time breadwinner in the family (with 19-year-old son at university). My husband is 75, retired and house-husband and, to my understanding, suffering from some kind of dementia and posssibly depression. He doesn't seek social contact (even finding excuses not to visit his son from previous marriage whom he loves and is proud of) and feels isolated. We've somehow managed to pass the first hurdle without my husband being very aware of the implications, via a very sympathetic GP, and have had a visit at home by the "memory doctor". The somewhat vague (again, probably sympathetic) diagnosis is "probable mixture of vascular dementia [brain scan showed damage] and early Alzheimer's."

My husband doesn't like or accept the A-word (that's for people who are gaga and dribbling - sorry). He also happens to have experienced some physical health problems in the recent past: surgery for colon cancer. He is convinced that all his "memory problems/head not working as it should" are due to this and will come right when he's fully recovered. He needs to keep his optimism, and any hint at realism on my part is viewed as negative and upsets him. Now it's a hernia which needs to be dealt with, and assorted digestive problems (a long-standing obsession). Until all this is sorted, he doesn't want to be "distracted" by further visits with the memory clinic.

It doesn't feel right to me to just keep playing along with these illusions, but I can't bring myself to give him the hard truth: surgery and recovery from it won't bring back your memory or reasoning faculties. In the past he's always been plain-speaking and wanted to know the truth. I feel it should come from a professional source but how do I get him to attend another meeting without him feeling forced (he's very determined that he knows what he wants/needs)?

Thanks for any suggestions

muse

 

[Grannie G]

Hello Muse

Your husband sounds a lot like my husband.

He won`t socialize yet feels lonely and isolated too.

I have persuaded my husband to visit a support group with me and he sat as far away as he could from everyone and looked out of a window. He didn`t join in at all. The only person he spoke to was an Occupational Therapist who knew how to talk to him.

So I don`t push him any more. If he complains I tell him what`s on offer and he promises to `go tomorrow` but never does.

My husband has very low self esteem and this stops him wanting to meet people. But he doesn`t think he has `real` Alzheimers, he is sure it will get better.

It might come in time. We can only live in hope.

Take care xx

 

[Skye]

Hi Muse, welcome to TP.

Reading your post was like reading an earlier post by Sylvia (Grannie G)!

You can't do better than follow her advice, she's been there, more than most of us. Her thread on the advice forum, 'A life in the day of......' will give you the picture, but you may not want to read it at this stage.

Keep posting, you'll find support here, and advice when you need it.

All the best,

 

[muse]

Dear Sylvia

Thank you for your reply. Your motto reminded me of a German (or Swiss?) saying I learned from my mother, in loose translation: Stale bread isn't hard; but NO bread is hard. I guess I've lived under this concept all my life, considering myself lucky because I've never gone without.

As I said before, I'm new to this forum and still trying to find my way around it. The more I read, the more I see similarities, but also how every case has its peculiarities according to the sufferers' character.

As one part of my own character traits, I feel more comfortable talking to an individual, rather than a forum of unknowns (but I'm working on that, because I think it might do me good). I haven't managed to piece together the whole of your story, but I get the feeling that we're on the same wavelength. At the moment I feel comfortable with you. I hope you don't mind.

I met with a local AS representative/support worker for the first time a couple of weeks ago, and one of her questions was: is your husband different to before, or himself, only more so? That made me think, and it's definitely the latter. Ok, he's different in that he used to have some exquisite analytical faculties, getting to the bottom of things and solving problems. That has changed. But in his relationship with the rest of the world, (family, social etc) spot on, only more intensely.

With my very best wishes for you and your family

Kathy (muse)

Hello Kathy.

You must feel free to send me a private message [PM] any time.

I do suggest you try to make use of the main Forum , in the `Support for people with dementia and their carers` section.

Private messages are good to help build personal contact, but using the main forum gives different perspectives on all dementia related issues from a variety of people.

I`m sure you know no two Alzheimers sufferers are the same. There may be similarities in their symptoms and behaviours but there are so many other contributing factors......... age, other conditions, medication, life style, basic personality, and so we can learn a little from many others and PMs only, limit our access to information.

When my husband was diagnosed, it took many months before I actually sat down with him and discussed his diagnosis. I did this when he was very frightened about his feelings ,and what he wondered was happening to his brain, and I felt he would benefit from an explanation.

He was embarrassed and ashamed with an older person`s attitude to mental illness. he wouldn`t have it discussed and even with me vowed he didn`t have real Alzheimers.



Now he is on an assessment ward, following a crisis, and I now believe he has accepted his condition. But he still feels he will get better.

So I would suggest you play it by ear with your husband. You know him better than anyone. As his condition deteriorates he might develop some insight and be ready to discuss it with you.

You can only play it by ear.

Take care xx

Hello Sylvia

Ok. Big step back to the main Forum. I know you're right. There's such a vast array of experience out there.

Thank you for your reassurance regarding playing it by ear. My sister recently saw a programme about AD on Swiss TV and called me, saying that he probably should be put in the picture, made aware of the situation. But right now I feel that the hope he's clinging onto is probably more important than the true, depressing, picture. He occasionally asks "what's happening to me, i'm sure it's getting worse", but I also feel he's not ready for the true picture. I would prefer to have the opportunity of a professional to put that to him, but he's not interested in seeing a doctor on this subject at the moment (wants to put his physical ailments right first), and if/when I feel he really wants/needs to know, I will sit down with him as you did.

Any suggestions/experiences on how and at what point to get him back to the memory clinic?

Thanks and best wishes to all of you
Kathy

 

[Grannie G]

Well done Muse.

Dear Kathy,

Now you are back on the main Forum I am sure you will get the support you need.

Muse
Any suggestions/experiences on how and at what point to get him back to the memory clinic?

When my husband repeatedly asked, like yours does, `"what's happening to me, i'm sure it's getting worse", I eventually did tell him he had Alzheimers.
He was very shocked and upset but in some way relieved to have a label.

It was only then, he agreed to attend the Memory Clinic. I told him the only way forwards was to accept the professional help that`s offered.


The Memory Clinic we attended was an 8 week course, one for the carer and one for the cared for, at the same venue. Different areas have different types of clinics.

It was wonderful for me. Supportive, informative and an opportunity to chat with others in similar situations.

My husband felt his was a waste of time.

But he did attend and it enabled the professionals, the Clinical Psychologist and Occupational Therapists to get to know him.

You will know when the time is right Kathy. Don`t let well meaning people interfere. They care, they feel informed because they read about it and listen to media reports, but have no idea, unless they have lived with it.

Take care

Love xx