Getting a Diagnosis?

[Nell]

It is fairly obvious to my siblings and myself that our beloved mother has some form of dementia. She is 82 and has deteriorated rapidly in the past 6 months. She and Dad now live in a Hostel for the Aged (a very good one I'm glad to say) and the relief she seems to be feeling because she no longer has to cope with everything is a joy to behold. (They have only been in there for a month.) Dad is severely handicapped, so for the past 15 years Mum has done literally everything for him - which he takes as his due!!

He does not accept that she is declining, and when I tried to gently broach the subject with Mum herself, she was very upset. Said she was just "tired and stressed" and said she'd "have to kill myself" if she had dementia.

Mum does not have a diagnosis and we would like her to start on appropriate medication if this is deemed the best thing. What are the experiences of other Carers in getting their family member diagnosed? (I do understand that a definitive diagnosis of Alzheimer's is not possible until after death, but I'm talking about a workable, every-day diagnosis. Also, on this site I've read that there are other forms of dementia, so I think we need to know - as best we can - what is happening with Mum so we can get her the best possible treatment.)

I have considered asking the Nursing staff in the Hostel to arrange assessment for her - would this be wise? Also, I hate the thought of lying to Mum but as her response to the idea of dementia was SO strong, should we just tell her we've organised "a general health check" rather than a specific dementia test?

I know many of you will have had experiences that would guide us in this (I have two sisters and a brother, and we are all very involved and very concerned).
Could you give us your suggestions, advice, tell us what worked and what didn't work, in your situations?

Thank you in anticipation of your replies.
Nell

 

[Brucie]

Hello Nell

yes, this is a difficult situation that we have all seen at some stage.

From my perspective, before you do anything else, I'd suggest you try and qualify exactly what you mean by It is fairly obvious ... that our beloved mother has some form of dementia. She is 82 and has deteriorated rapidly in the past 6 months

How has this manifested itself? What would you say to her GP?

Start to keep a diary of each time you see her, and how she is [good and not so good].

Actually, I'm not sure who CAN arrange an assessment, and whether this can be done formally without her agreement. I assume that at least her GP needs to be involved.

"General health check" or "MOT" is fine to use as a way of arranging the test, in my opinion.

Take it slowly, and gather as much knowledge as you can of her day-to-day condition.

Your Dad will be trying to protect her, consciously or unconsiously, and her health has such a direct effect on his own that he will be terrified of losing her - it is bad enough when you are both well.

 

[noodle31]

hi

for us, we took dad to casualty after a particularly bad episode.

in lucid moments he continually talks of killing himself

have a chat with the staff, they may have noticed a decline in the past month, or characteristics of the illness

hth

love Jane xx

 

[Nell]

Thanks so much, Bruce and Jane. I feel really responsible for guiding this situation because I'm the eldest and M&D chose to move into a Hostel near me for support.

I think the idea of keeping a diary is a good one, Bruce, and I should have thought of it. I did keep one years ago when another family member had a mental illness and we had trouble keeping track of his episodes.

I will talk to the staff too. They are in regular contact with the doctor as well, so that would be helpful.

I won't bore you with a great list of things we've noticed in Mum, but here are just a few:-

difficulty with PIN numbers on accounts - to the point where the bank asked us to "do something about your mother"

difficulty adding up where there is a figure to "carry" (eg. 17 + 28)

unable to locate a street address even though she had been there just days before

HUGE loss of short term memory - cannot remember things she has told you just minutes before - doesn't remember things that happen every week, etc. (As with most older people, short term memory has been a problem for a while, but this represents a sudden massive change)

loss of organisational skills - could not contribute in any real way to the packing or unpacking of her household when they moved into the Hostel recently

tried to help me make the bed the other day but could not remember to smooth the sheets (my sisters and I both laughed and cried over this one, because this is the same woman who used to be SO precise that if the sheet was 1/2 inch further over one side than the other, she would remake the bed!)

thought I was my sister for a few minutes the other day - she does this on the phone frequently but this is the first time she has done it in "real life"

I guess we could start by recording these anecdotal changes (altho' the dates are now lost) and then keep adding new things to the diary.

Thanks for the comments about Dad too. I guess I feel angry with him sometimes because he still expects her to do everything for him and find things for him, and she no longer can. She gets upset because she can't and then gets cross with him! I've tried to tell him that it isn't that she won't do these things for him, but that she can't, but he brushes this aside. I hadn't thought of it as protective behaviour (of both of them) and this will be helpful in dealing with the situation.

In the meantime, any other thoughts, suggestions, ideas etc. on dealing with this situation will be gratefully received.

As you can see, we are new to this, and need all the help we can get.
Nell