Just starting out...

Mayflower

Registered User
Jan 30, 2009
5
0
Surrey
Hi, I'm new to the forum and new to dementia care. Really pleased to find the forum - it looks like a great place to share ideas and questions. I have spent a very frustrating year trying to get some/any sort of medical help for my mother-in-law who blatantly has dementia and is deteriorating mentally and physically however her GP cannot see this.

I have just read 'Contented Dementia' by Oliver James and have gone from feeling helpless and frustrated to feeling totally empowered to understand the disease and to care for mum-in-law for the rest of her life. Would recommend anyone dealing with a dementia sufferer in any capacity to read this book.

However, I am still concerned that she has had no medical assessment so we do not know what is causing the dementia and whether there is any treatment that could help. Her GP claims that he cannot refer her for a dementia assessment unless she requests it herself and wont believe that she doesnt have the capacity to do this. Which leaves me the only option of trying to confront her with her dementia which only makes things worse. She sometimes says that she's having problems with her memory but wont agree to go and see anyone and even if she did she would have forgotten by the time we got there!

What I would like to know is - just how important is medical assessment for dementia and does anyone have any tips for getting over this hurdle.
 

pebble

Registered User
Apr 18, 2008
57
0
The Borders, Scotland
Dear Mayflower
I struggled for a year trying to persuade mum to go to the Dr about her memory and confusion etc. Eventually persuaded her to accompany me but mum thought it was about her arthritis. I had no masterplan and was mainly winging it in desparation. Mum is slow walking and at the surgery told me to go on ahead and tell the Dr she was on her way. I bolted in to the Dr's room and in a barbled 30 second window told him about mum's confusion etc. To my amazement he chatted to Mum for a few minutes and then somehow persuaded her to do the MiniMental test (followed by blood and urine tests etc.) It was a struggle for sure but onwards mum got referred to a consultant, had a scan and, yes, it is alz. One thing I did have with me to give the Dr was a fairly short letter which mum had signed saying I was helping her with prescriptions and health issues and that the surgery should note this and he could discuss such matters with me. Doc might have sighed with relief a bit as he filed it away! I kept it all low key with mum and said it was to stop me having hassle with the surgery phone system etc etc. To be honest mum's confusion made all of that possible - 6 months earlier and she would have called a halt to proceedings.

Was it worth it? Despite the dementia word a weight came off my shoulders that day for sure - it was the only way to go to get help for Mum struggling to eat properly on her own. However Mum was quite unsettled by events as you can imagine. She came out the other side of that though - . Mum has been stoic, surprising Dr, consultant and family by going along with a care package. Carers do meals and prompt Aricept. a community psychiatric nurse visits once or twice a fortnight. 3 months into the medication i am sure Mum is better in herself - the confusion and memory issues are as bad as ever but there is a stability and calmer atmosphere, mostly. she definately laughs more and can be surprisingly lucid on the phone on good days. Dr also signed forms for attendance allowance and council tax exemption etc. which would have been harder to deal with without his input.
Hope this might give you a few ideas.
 

Mayflower

Registered User
Jan 30, 2009
5
0
Surrey
Thanks Pebble that's really encouraging - its answered the main thing that was nagging me as to whether there was anything to be gained by getting an assessment anyway. I wasnt even sure they were still giving Aricept and suspected they might not give it to the elderly. Sounds like you gained a lot. I am worried about how she will react to a diagnosis but am guessing the dementia itself will help with that.

It sounds like you were really lucky with that GP app. I tried a telephone consultation with her GP which I was assured would be confidential. I had ten minutes with him and explained everything that was going on. Not only did he not help but when he next saw her - told her I had rung him which caused a problem - so much for confidentiality. He then asked her a couple of memory questions and said she was 'fine for her age' and told her it didnt matter what any one else thought! My father-in-law was sat next to her but was told it was her appointment and he was disregarded!

Unfortunately they really like this doctor and have a lot of confidence in him so its having quite an affect and not easy to get them to see anyone else. Not being mum-in-laws main carer makes it tricky to negotiate these things and dad-in-law doesn't seem to want to try any more visits as getting her to apps is stressful for him even if I take her. However, that council tax exemption you mentioned might be a hook so I'll try that. I got the attendance allowance for her mainly because I thought if we applied for it she would get an assessment but they just gave it without any assessment!!!

Thanks for taking the time to reply its been really helpful
 

Sandy

Registered User
Mar 23, 2005
6,847
0
Hi Mayflower,

You might want to take a look at this other thread that seems to be dealing with this same issue:

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=14485

We faced a situation very similar to yours, but when the family GP suggested a visit to the memory clinic "just to be on the safe side" it was accepted without resistance.

For some reason your in-law's GP is not taking this approach. Maybe he is being extra cautious about deferring to your MIL's wish not too explore further - for fear of jepordizing their relationship of trust. Maybe he is sceptical about the seriousness of her condition or the effectiveness of anti-dementia medication. I doubt if you will ever find out what is at the root of his approach.

My only experience of Aricept has been with my MIL where I feel (and her CPN and the rest of the family agrees) it has been very successful. Her memory is somewhat better, but her agitation and confusion is much less.

I don't really have any advice as how to proceed from here. I suppose I would be tempted to back off pressing for a diagnosis for a month or so and let things settle down a bit.

In the early stages of dementia, if it is dementia, the person if can be scared and defensive, so pushing for a diagnosis can make things temporarily worse. Other people with dementia have actually said that they were glad when the diagnosis came because at least they could put a name to was wrong and persue a course of treatment.

Take care,

Sandy
 

kitty1

Registered User
Jan 28, 2009
8
0
Dear mayflower
I also had a word with the doctor about my concerns of my husband. The doctor said he would have to see my husband, so I got my husband to the surgery by saying that the doctor needed to see him about his medication that he was taking for other problems.
While we was there the doctor was asking him questions about his medications and my husband kept looking to me for the answers, this prompted the doctor to say to my husband you seem to be having a bit of trouble with your memory do you mind if I do a test, the doctor then said to him have you heard of memory clinic and spoke to him about seeing them which my husband agreed to. My point is some times you have to fool your loved ones into things for their own good.
 

pebble

Registered User
Apr 18, 2008
57
0
The Borders, Scotland
Mayflower
I am sorry to hear that the Doctor has such a set view, for whatever reason. As you often read on TP a sideways approach brings results so much easier when trying to get things done with dementia sufferers. If you ask Do you want a memory test? it is inevitable how its going to turn out. Mum's GP was not quite sideways but was very "We should have a look at this shouldn't we." Can you answer these questions for me? Our visit took up way more than the alloted time. He was less than 35 years old and my Mum was quite a handful to cajole along. My heart was in my mouth right through it all as she bristled up more than once. I am so grateful for his help which was so much in my Mum's best interests. Mum lives alone and I am a 5 hour drive away which might have a bearing on the big effort to assist. (When the consultant's turn came he did a visit to Mum at home too.) I understand your FIL though - the emotional drain of these appointments is immense. I wish I could suggest something to move your situation forward. Maybe someone else has experience of an approach to a reluctant GP.

I do also have to agree that hearing a diagnosis can be problematic. Mum didn't really discuss it with me at all and appeared to ignore it but was very restless at that time. I was generally not flavour of the month but she didn't really associate the subsequent health visits with me. Things have - touch wood - plateaued out. I do feel the outcome of some carers and medication has "bought" Mum more quality time. Best of luck.
 

Mayflower

Registered User
Jan 30, 2009
5
0
Surrey
Thanks everyone those are all encouraging messages and its nice knowing you are all out there.

I've backed off a bit and have found recently that she is now asking me 'Somethings not right what do you think I should do'. I've simplified my response and her repetition means I get to relay the message whenever she asks So I'm encouraged to think we'll get there in the end. Also all the current interest in the media is helping my father-in-law to understand the importance of getting help.
 

heartbroken

Registered User
Feb 17, 2008
747
0
derbyshire
When my father went for help at the GP he asked whot do you want me to do and almost laughed in his face this made him go further into himself and wouldn't get help, so I phoned social services they was fantastic it took 2 weeks before anyone came to see dad but as soon as they did they saw there was a big problem and dad was cracking up.
you could try ss I found them great help
 

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