Seems a rapid deterioration

[Barry10]

The good lady age 74 was provisionally assessed with Altzheimers in May.
Had a brain CT in July and waiting to have the first consultation with the specialist on 3rd September.
Over the last two months we have seen a rapid deterioration in both speech and cognitive behaviour which is alarming for both my wife (patient) , Myself and the family.
I have ensured that her diet well surpasses the minima for calories for the last two years as she has lost 15% of body weight.
She has always been of a slight build, but body mass has dropped to 16.9 and is increasingly frail despite having a good diet and eating well.
Although tested for any malignancy which have all been negative, she has continued to lose weight.

GP’s are pretty useless I’ve got to say, even though I’m on the practice PPG group committee they have fallen short over two years, being quite offhand and dismissive, always passing the buck to the mental health service.
All being frustratingly annoying.
I’m used to cancer, being a admin on officially the worlds largest cancer support forum, but Demetia/ Altzheimers is completely new to me.
Looking for any help and suggestions from the members of this forum.
Thanks in advance
Baz

 

[Grannie G]

Hello @Barry10 / Baz. Welcome to Talking Point. I hope you find it as helpful and supportive as the cancer support forum.

There are no `normals` with Alzheimers /Dementia . The rate of progression is unpredictable in any individual. Its one reason , I suppose, why GPs hesitate to advise and few consultants will commit themselves to hows and whys.

The specialist may have more information for you and it is possible your wife has a form of dementia other than Alzheimer`s .

Please continue to post on this Forum. It is very supportive and there are a lot of shared experiences. Someone may post something which will just `click` with you.

It will be interesting to hear of the outcome of your consultation with the specialist.

 

[Izzy]

Good morning @Barry10 and welcome from me too.

I wondered if you would find the Society's Dementia Guide useful in a general way -

https://www.alzheimers.org.uk/sites/default/files/2018-07/AS_NEW_The dementia guide_update 3_WEB.pdf

Like @Grannie G I think you need to persevere with her specialist.

I'm glad you found the forum.

 

[maryjoan]

I was drifting all over the place when my partner was diagnosed, with no real back up from medics as they are unable to predict this foul disease..

I have learnt so much on TP - and my best advice is to 'stick with it' and if you are concerned about something, no matter how strange, start a new thread on here, and someone is bound to pick up on it who will have had previous experience of whatever it is, and can give you some advice and support.

TP is my life line into the world of dementia and, equally, my lifeline into the real world that we like to think we still belong to......

good luck.

 

[Janie M]

Hi @Barry10 . As GrannieG said, I’ve found what’s “normal “ for someone may not be for someone else. It’s one of those where you can only do your best, no rights or wrongs , and I find TP useful.

 

[Barry10]

Thanks one and all.
I understand the unpredictability of this obnoxious condition and as such we take each day as a new adventure.
This is the only way we have found to deal with the swings that take place,

 

[PalSal]

The good lady age 74 was provisionally assessed with Altzheimers in May.
Had a brain CT in July and waiting to have the first consultation with the specialist on 3rd September.
Over the last two months we have seen a rapid deterioration in both speech and cognitive behaviour which is alarming for both my wife (patient) , Myself and the family.
I have ensured that her diet well surpasses the minima for calories for the last two years as she has lost 15% of body weight.
She has always been of a slight build, but body mass has dropped to 16.9 and is increasingly frail despite having a good diet and eating well.
Although tested for any malignancy which have all been negative, she has continued to lose weight.

GP’s are pretty useless I’ve got to say, even though I’m on the practice PPG group committee they have fallen short over two years, being quite offhand and dismissive, always passing the buck to the mental health service.
All being frustratingly annoying.
I’m used to cancer, being a admin on officially the worlds largest cancer support forum, but Demetia/ Altzheimers is completely new to me.
Looking for any help and suggestions from the members of this forum.
Thanks in advance
Baz

Welcome Baz, as everyone has said TP is a real lifeline and get with practical support and insights. Although, we have a neuropsychiatrist who we see every three months, our GP although kind and sweet told us a few years back that she could no longer help us , as she was not equipped to handle Alzheimers. Luckily, the neuropsychiatrist is very good and completely helpful. And I have practical advice and input here at TP, and a great place to moan and find the support I need to get through each day.

 

[Oh Knickers]

Welcome Baz, as everyone has said TP is a real lifeline and get with practical support and insights. Although, we have a neuropsychiatrist who we see every three months, our GP although kind and sweet told us a few years back that she could no longer help us , as she was not equipped to handle Alzheimers. Luckily, the neuropsychiatrist is very good and completely helpful. And I have practical advice and input here at TP, and a great place to moan and find the support I need to get through each day.

Hi Barry,

As with these things, with Alzheimers, you learn a lot about yourself and the realities of interactions with Doctors and others involved in the care process.

For really solid guidance and, more importantly, listening here are a couple of contact numbers for you. Both are good to offload to. They also give good, sensible - been there, done that - guidance.

Alzheimers Society; The main number is:
0300 222 11 22

There should also be a local number for your area. This is useful should you need help with Social Workers, care homes etc. Use the following link.:
https://www.alzheimers.org.uk/find-support-near-you

Admiral Nurses:
0800 888 6678

Hope things go well for you next week and you get some answers to the questions you have.

 

[Barry10]

Thanks,
It is not about me to be frank and I have administrated with many colleagues officially the worlds largest online cancer support forum for many years.
As one can imagine we are a one to one support forum so we daily live with the ups and downs of diagnosis, treatment and post treatment of 59,000 members, yet nothing has prepared me for the daily swings that this abominable disease brings.
It robs us of our past and future.
Barry

 

[PalSal]

When I was first diagnosed with leukemia (CML) in March 2015, as I am in a center for oncology I was offered all kinds of extra services by the University Hospital, as part of my recovery, I guess leukemia study is much better funded here than Alzheimer’s research. At first I said I did not need any help , and then I thought it over and told my doctor I could use help dealing with the situation I was living with, the progression Alzheimer’s. At first they said, "oh the memory clinic here at the uni has everything to help you" At that time in 2015, we were 13 years post Alzheimer’s diagnosis. I told the oncology group that the Memory Clinic was not staffed to do more than diagnosis. Oncology was skeptical. They went off to look at the situation and then got back to me and said I was right that there was nothing on offer to help me. (To be fair , I was looking for assistance in English, not French German or Italian, my husband speaks no German). In the early days of my husband’s Alzheimer’s, I was very active in raising and finding monies for Alz Associ here, both nationally and locally. Eventually, oncology found me a social worker who had worked for the Alzheimer’s association for seven years (they had to let her go as they did not have the funding for her position any longer) . With her help, I found some money for home assistance, and she also found two volunteers to walk with my husband. One man stayed the course and the other dropped away. He is 81 years young, and has really become a friend and he comes for two hours every week and walks with my OH and then they have a coffee. The help I now receive is 75 hours of help a month with a maximum spend of 27K CHF per year.

I now look at my CML as a godsend which helped me to get what I needed to handle my home life....funny how life works. I find living with a managing my CML a much easier path than living with and managing the progression of my OH's Alzheimer’s. So, I think I understand what you are saying. Again welcome to Talking Point. It has been a wonderful place for instructive information for me since I found it in 2011.