What do we say?

[Kriss]

Hi everyone - my first visit although I already feel like a Pro (Professional that is)!

I lost Dad 18 months ago after he had suffered a form of alzheimers and over the last 9 months his sister has started to follow the same pattern. As I am her only relative I have had to take responsibility for her care although I am extremely fortunate that my aunt has wonderful friends and I feel like I have known them all for years already. We live at a distance - over an hours drive on a good day - but before she deteriorated too much we did establish that she definately did not want to move nearer as she preferred staying local to her friends. We have suspicions that she knew she had a problem but she has always been fiercely independent and from experience I remember Dad was very good at covering especially in the early stages. The main difference in my aunts condition is that it appears to be staged - multi infarct ? - whereas Dad seemed to decline more steadily.

Following a recent and serious decline that resulted in a hospital stay her specialist advised that she should not be allowed to return home on her own and she has now moved into a Residential home. However none of us has been brave or heartless enough to tell her that she will not be going home. We have continued to offer the carrot of "getting better and well enough for the Doc to say you can go home".

Should we now ? And if so, how? What do we say?

We managed to put in place an EPA a long time ago so day to day management of her affairs has not caused a problem. She is also very fortunate that she has sufficient funds to pay for the home without having had to sell her house but we will have to face up to it soon purely from a practical sense.

Her physical health has improved greatly over the past month while in care but she was very tearful and was trying to ask where/why questions when I visited at the weekend. She has terrible difficulties with speech - something that started 4 years ago when she lost her husband. This constantly masks the other problems perhaps making them seem worse and makes me question whether we have done the right thing. Her friends all support me and I guess I know she couldn't possibly cope at home but I keep thinking "what if I were stuck somewhere I didn't want to be and couldn't make people understand I was OK?".

extra note: whilst temporarily losing this input I drifted in and out of some other postings and they have made me realise just how many symptoms my aunt has already displayed. Thank you Bruce for your diary entries - they brought back so many of the experiences we had with Dad, sundowning especially - walking down a country lane at 3.30am in the winter with him trying desperately to change the subject etc! How selective our memory is when it tries to heal after all the heartache.

 

[Brucie]

The issue of whether or not to tell the person the nature of their complaint is a difficult one. Conventional wisdon seems to be to tell them.

My own feeling is that it simply must be judged - by those closest - on a case by case basis.

I made the judgement that it would cause Jan major problems to know, so I always told her just that she had memory problems that we were sorting out. Jan was far more intelligent than I am so she may well have realised what she had and was protecting me by not telling me. How can we ever know?

There's a lot of pretence throughout this illness: each day when I leave Jan I tell her I am off to do some shopping - because she seems to understand that better than simply saying 'bye.

If it is really impractical for your aunt to live at home, and it would cause her concern to come right out and tell her she will never go back, I can't see the harm in using 'the doctor will tell us when you are ready to go home' story.

Speech problems do add immensely to the problems, but if speech is gone, then it is gone. Our problem is that we may imagine more complex things going on in their minds than may be the case. I know I always fear the worst with Jan, but what can you do? How can you know?

I have had the chance to observe the other residents in Jan's home over the past two years and, while many do say they want to go home, that is almost always just something to say. They desperately seek a role within their environment and some become furniture movers, some become carers for their fellow residents, some clean the place, some simply seek somebody who will talk to them normally or who will spend a little time with them. There have been none that I could detect to be in any torment.

 

[Kriss]

What to say...

Thank you Brucie - I guess you can imagine the relief when you read the words that echo your own thoughts.

I guess we've got this far by feel and will have to continue that way. Yes - Aunt is a highly intelligent woman and all along I've been having the guilt trip over avoiding giving information that she hasn't asked for. It has helped me tremendously to be able to discuss it all openly with her friends. I constantly question every little indication as to whether I have lost her trust - to have someone depend on you and then to have to go against their wishes seems a terrible betrayal.

She was desperate to stay "at home" but had initially refused all attempts to employ help except from friends and neighbours however this was becoming a dreadful and unfair burden on them. She has had several short term stays with my mother who is 78 since Christmas with me on hand when I wasn't working but mum's health was beginning to suffer with the stress so soon after she had nursed and lost Dad. It wasn't working out between them at all. We thought we had finally cracked the nut - though not without more trauma when she agreed that to live at home she had to have help but within days having started with a minimal (most she would accept) hoping to increase it almost immediately she was taken ill with what was probably a TIA and was taken into hospital. Her condition deteriorated instantly - the usual triggers (change of routine, strange environment etc) and it was during this stay that many of the more obvious signs of the dementia were then witnessed and recorded. The consultant was quick to stress that there was only one option and we feel we have been extremely lucky to find a residential placement that offers a level of security that is suitable. I have found myself considering totally impractical alternatives in moments weakness but in reality I know that her safety is of paramount importance and this could never be achieved in any other way.

I keep hoping that she may decide herself that the house will have to be sold just as she eventually agreed to sell her car but maybe I am just looking for a guilt free route for me!