Learning to be Devious

[Jude]

Dear Friends,

Carmen raised an interesting and amusing topic this morning on 'Where Do I Start? from ChrisC, about her attempts to stop her father from driving. Her way of dealing with this was ingenious.

Basically - how to successfully tell 'white lies' without feeling guilty?

I've told some 'whoppers' to my parents to prevent them from getting into dangerous situations; to avoid endlessly tedious conversations or to just keep life running smoothly. I'm not trying to be flippant about serious issues, but sometimes a bit of humour can help .....

How do you cope? Perhaps we can share some devious moments without feeling bad about it and post them in one topic heading.

Jude

 

[Norman]

devious ?

I often find silence is an answer and not to enter into any discussion at all.
After 7 years on Aricept and many visits to our consultant,today was our day to report for review.
All hell broke loose,why do I have to go? This is the fault of people interfering in my life,there is nothing at all wrong with me.
I should know better after all these years but I tried to reason and explain why we have to visit the consultant. I opted out and kept quite.
When we left for the appointment my wife was calm, loving and so grateful to me for looking after her.
She thanked the consultant for his care and for being so nice to her.
My advice is to listen ,don't comment certainly don't argue and it will blow over.
When a situation which seems at the time hopeless,there seems to be no future,life isn't worth living I find it a help to think this will blow over soon ,it's only a short little episode and we will be back to as near normal as we can ever be.
Hope this helps it helps me
Norm

 

[Nutty Nan]

You are absolutely right Norm, but it is not always easy to remain detached and not to take things personal. I often wonder if it is, in fact, more difficult to accept the ramblings or attacks from a sufferer who is our partner/husband/wife, rather than an elderly parent?
From a distance, and when I am cool and collected, I know exactly how to handle difficult situation (no arguing, no reasoning, no confrontation etc.), but we have been married for almost 30 years, and I am used to discussing things, putting forward an opinion, etc., and I miss that part of our relationship almost more than anything else. When I force myself to just nod and acquiesce, it feels as though I am not giving my husband the dignity and authority he deserves.
It takes a lot of time to learn that these tactics are not just OK, but necessary for the sake of the AD patient.
With all the love in the world, this is tricky stuff, isn't it ....
All the best, Carmen

 

[Norman]

Carmen
I spent my working life in N H S,I found it easy to be calm and collected and to comunicate with patients with mental problems.
As you rightly say when it is your own it is a different scene,you become frustrated because you want your own Wife/husband/partner back,you want to be as you both were for all those happy years,AND YOU CAN'T,and you know you never will again.
I have had a few bad days but this site does help, they say big boys don't cry,but I do often.
Bless you all
Norm

 

[Brucie]

There have to be positive things about in any situation. The positive thing I figured out early on is that a loss of memory means that anything you say is likely to be forgotten very quickly. So anything unintentionally unkind, or any lie - white or black - will not hurt the person with dementia. It may, of course, haunt you, but that is frankly the least of your problems.
It comes down to what is the best for the patient and if an untruth helps them accept something that might cause them worry or pain, then why not?
By reason of their illness, these are very special people, being both adult and child, being totally dependent on others for their well-being, having to be totally trusting. I have moved from being angry about the situation we have been put in, to feeling very humble and privileged to be able to help someone who, after 38 years together, no longer knows me.

 

[Norman]

Brucie it sounds as if you and I are in similar situations I am caring for someone who still knows me but at times ask ME when is Norman coming back!! W e have been together for 57 years.
You made a very valid point about words and situations being forgotten within minutes,this is true but they are not forgotton by the carer and we live with the regrets of being devious to a loved one.
This also applies to being angry and showing unkindness but again it is forgotton quickly.
We just have to take the good with the bad and thank God for the good years we have enjoyed together,a great many have not been as fortunate as us to have those years.
Day to day Brucie

 

[Jude]

Dear Brucie,

Your comment about trust really hit home. AD suffers having to have total trust in their carers to do the right thing at all times since like children, they are totally 100% dependent upon their carers to do everything in their best interests for them. And of course, as carers, we do our utmost to provide a trusting and caring envirnoment to the best of our abilities every day.

This is a very heavy load to bear sometimes. I think it must be incredibly difficult for somebody like my father, who has always had total control over his life and finances, to surrender it all to me. He sometimes accuses me of trying to steal his money or interfere with his bank accounts. He no longer understands that bills have to be paid and that his bank account balances go up and down accordingly. Sometimes, it is very hurtful to hear him accuse me of stealing his money and even more difficult to try and help him understand that bills just have to be paid.

There have been so many cases in the newspapers recently where elderly people have lost thousands of pounds through trusting unscrupulous tradespeople and relatives. My father always brings these to my attention and we then have endless discussions about where his money is invested, etc. It gets so wearing to be constantly 'in the wrong' for trying to do the right thing.

So, as to feeling humble about looking after them - I don't feel very humble to be caring for my parents, although I'm glad I'm looking after them at home where I can give them the full care and attention that they deserve, since I really don't think that anyone else would care for them and understand them so much as I can.

Regards, Jude

Jude

 

[Brucie]

Jude, I agree - the load is so hard to bear and the uncertainty whether one is doing things right weighs heavily.
It is a couple of years since my wife was at home and I had forgotten the issues about stealing. [and the sundowning, and the medication, and the falls, and the shouting, and the constant worry, and the fear, etc]
With us it was not usually money, as with you, but it was more hurtful than that in that it was her belief that I had stolen her life. Originally Jan had been the vivacious and gregarious one, where I had been much more retiring. As the dementia started to show, I found that I automatically filled the gap. I became more outgoing - probably, I think, to try and hide from others the changes in my wife. We were always like a composite person [something my mother complained of as she said we were too complete a couple and we froze other people out]. As Jan changed, so I changed to maintain our composite personality. Does that sound weird? It does even to me now.
Ultimately she was almost totally withdrawn, and then accused me of stealing her personality.
A clarification by the way - I didn't mean I felt humble about looking after my wife, more that I felt - feel - humble in her presence because she was and is so brave in what must be a complete nightmare for her. I can't really adequately express it, but I feel something similar when I am with several of the other residents at the home, as if I am in awe of them, somehow.

 

[Jude]

Dear Bruce,

Your explanation of your redefinition of your personality to compensate for Jan's decline is a brilliant piece of insight. I understand exactly.

My father has always been more outgoing than my mother and although they both have AD, he seems to be maintaining a stable position because he has to think for both of them now. I wonder how it would have been if my mother had been less afflicted than him. I think that she would have rallied and filled the vacuum, as although she was a quiet person, she was also very strong and competent. They've been married for 62 years and have always been very close - a very similar dynamic operates as in your marriage I feel.

Your wife's accusation of your stealing her life is very sad and that must greive you very much indeed. It is a far more hurtful accusation than that of theft of money and possessions. I really don't know how I personally would have dealt with it as the concept is so intangible.

I often wonder what my parents are thinking about. It's easier to imagine my mother's thoughts, as she is often fearful and insecure and needs a great deal of reassurance and physical expressions of love to help her feel safe. My father is very insular and I have to listen very carefully to what he says to work out his thought patterns and it's quite often easier to listen to what he doesn't say - if you know what I mean.

It must be incredibly difficult and quite frightening to be wandering through the foggy landscape that AD suffers inhabit. I find it rather horrifying to contemplate being in such a place and possibly knowing that I couldn't ever escape. Although I do understand what you mean now by being humbled by it, I think I find the concept quite terrifying.

With very best wishes.

Jude

 

[Brucie]

Hello Jude
trying to understand increasingly deteriorating speech is an interesting one. Jan's speech has almost entirely gone now, though she tries desperately to communicate.
Once after I had spent my two hours at the home talking with Jan, one of the assistants said - "it's amazing how you can understand her and communicate with her". I had to say that I hadn't understood a word, fully, but that I used bits of her words, intonations, eye and mouth movements to piece together what she meant. When I got it right, I would be rewarded by a set of facial expressions "yes! I've got through to him!", and often and most welcome, a smile. When I got it wrong, her mouth would show it and if I said "I've got it wrong again haven't I?", she might manage a vocal "YES!"
You have to keep trying though, and sometimes she will find a whole sentence that is relevant and say it. Lottery? Hah! Give me a few understandable words from Jan, anytime!
These days, her neural/eye connections are mostly gone, so we rely ever more on weird conversations - I talk incessantly to her - and on pure physical contact... holding hands, cuddling, combing her hair, etc. I get some amused looks from staff and strange ones from other residents sometimes. I often get a group of residents hovering nearby as few of them get such regular visits and close attention and - conversation!
I tell you, if I wrote a book about my life the past few years, no-one would believe it! Least of all, me. When I check back on my detailed diaries [published on the Alzheimer's web pages at one time] I can't figure how I managed to do what I did.

 

[Jude]

Dear Bruce,

I've just got a rather good book entitled ''Altzheimers - Finding the Words. Written by Harriet Hodgson, Chronimed Publishing ISBN 1-56561-071-7. You may like to get hold of a copy from amazon.co.uk. It deals with all sorts of ways of communication.

We all seem to develop a knack of 'Atlz-speak' which outsiders just can't understand because it's a foreign tongue. Every morning at breakfast my parents watch the hordes of birds that come into the garden, as well as other visitors. Yesterday my mother said 'Where? Big Tree - up and down'. This translated into 'Where are the squirrels this morning?'. She was rather tired at the time and does tend to abbreviate things a bit...! Sometimes she can be very lucid, but she has really lost the ability to conceptualise. The saddest thing though is that AD suffers don't make any memories.

You mention combing your wife's hair. My mother loves this too and it seems that many AD afflicted people enjoy this form of grooming. Perhaps it helps to calm them down. Physical contact is so valuable when verbal communication is failing. Holding hands is great, as well as lots of spontaneous hugs which always bring a bright smile. We have become a very tactile family..!! One routine we have that we all enjoy is, despite whatever dramas have occurred during the day, we hug and kiss each other when my parents are just getting into bed. It's a nice end to the day.

It's amazing where we as carers find the energy to just keep going. It must be a case of 'love conquers all'. The very word 'carer' implies strength and responsibility. It can be very wearing and tedious at times, but there are rewards and a great deal of satisfaction to feel that you have done your best for another day.

Jude