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I don't know where to go for help - Carers UK Forum

I don't know where to go for help

Tell us a bit about yourself here.
I am new to this forum. I am 82yo. My wife is 79yo and is showing many of the symptoms of dementia which our children and friends have seen develop over that 12 months. Our eldest daughter, Camilla, 57yo, was diagnosed with stage 4 colon cancer nearly 3 years ago. We live in Somerset while she lives on her own in West London. The superb team of oncologists at the Harley Street Clinic (paid for by her company's healthcare insurance) have decided that it is not working and the tumours are growing. She has been told that she has months rather than years to live.
My wife has suffered from ME for over 40 years and is in denial about the dementia symptoms putting them down to her ME.. Until a month ago she refused to see our Gp saying that she will see her when Camilla gets better. A month ago I managed to get her to see the doctor about one of her falls. The doctor recognised the signs of confusion and wanted to refer her to a Memory Clinic and a brain scan. These she refused to contemplate until I offered to go to the Memory Clinic and have a brain scan with her. We are still waiting for a reply to that referral. In the meantime, she has been iron-deficient anaemic for two years despite taking iron pills. We managed to get her an iron infusion last Friday but it will take 4-6 weeks to show any effects. She is hardly eating anything, she is urinary incontinent about twice a week while feeling very weak and confused. She tends to fall asleep when watching television.
She is getting irritated with me if I point out any inconsistencies when she is talking with other people. I have tried to get help from various dementia charities but they all tell me that they cannot help until the doctor has specifically diagnosed dementia. Our doctor agrees that she is showing all the signs of dementia but until the tests have been done she cannot make a diagnosis.
Our middle daughter is proving to be a tower of strength . She lives 12 miles away from us but manages to go up her sister in London once a week to spend the night with her. Unfortunately, our son and Camilla have been at angry loggerheads for the past twenty years and will not speak to each other. The original causes of the rift are lost in the mists of time.
I am sorry that this all sounds so self-pitying but I am exhausted with lumbar spinal compression while trying to do my best for my wife and daughter. I don't know where to turn but thank you for reading - if you managed to get this far.
Welcome to the forum. It's horrible being torn in many directions.

I nearly had a breakdown a few years ago, husband died suddenly, I was left to run our business, with 30 tons of vintage lorry spares to sell, with a brain damaged son and housebound mum 6 miles away. No room for me amongst all this!

Counselling was a life saver. If financially possible ask your GP to recommend a private counsellor, otherwise you may have a limited number of sessions.

Write a few lists, to start with in any order, then shuffled into priorities.
What annoys you most that can be changed?
What do you want most?
Just a quick thought. Yes, some dementia charities won't offer much without a diagnosis, but that doesn't stop you reading the information on their websites.

It's also worth checking to see if there is a carer support agency in your area. I've had a look on the Carers UK main site and found this page for Somerset: https://www.carersuk.org/help-and-advic ... ask=search

Hopefully that will lead you to some support - carers' organisations tend not to worry about diagnosis so much as helping to manage stress and access support.

That's where I'd start.
Hello Adrian
Welcome to the forum
Am very sad to read your post. Very much a double whammy for you.
My lovely late husband was diagnosed with vascular dementia and had several strokes plus other issues.
Was very much a learning curve for me. May I suggest that you don't correct your wife with her inconsistencies. Serves no purpose and is upsetting and irritating for you both. I found coping with hubbies dementia less fraught when I stopped. He truly believed what he was saying was correct. It may work for you and perhaps worth a try.
Hello Adrian

Welcome to our forum, I'm sorry to hear your experiencing a lot of difficulties at the moment, but you've definitely come to the right place to connect with other carers. As well as the forum we are also running various online zoom sessions, where carers can come together, chat and support each other. The session is run weekly, I've attached a link to the sign up page and there's no pressure to share anything you're not comfortable to, many of our new carers who joined the weekly zoom session have said they've found the sessions really helpful. Please have a look and at the other online meetups we are running.
https://www.carersuk.org/help-and-advic ... ne-meetups
with kind regards
Ingrid
Adrian_2201 wrote:
Tue Jan 11, 2022 12:36 pm
I am new to this forum. I am 82yo. My wife is 79yo and is showing many of the symptoms of dementia which our children and friends have seen develop over that 12 months. Our eldest daughter, Camilla, 57yo, was diagnosed with stage 4 colon cancer nearly 3 years ago. We live in Somerset while she lives on her own in West London. The superb team of oncologists at the Harley Street Clinic (paid for by her company's healthcare insurance) have decided that it is not working and the tumours are growing. She has been told that she has months rather than years to live.
My wife has suffered from ME for over 40 years and is in denial about the dementia symptoms putting them down to her ME.. Until a month ago she refused to see our Gp saying that she will see her when Camilla gets better. A month ago I managed to get her to see the doctor about one of her falls. The doctor recognised the signs of confusion and wanted to refer her to a Memory Clinic and a brain scan. These she refused to contemplate until I offered to go to the Memory Clinic and have a brain scan with her. We are still waiting for a reply to that referral. In the meantime, she has been iron-deficient anaemic for two years despite taking iron pills. We managed to get her an iron infusion last Friday but it will take 4-6 weeks to show any effects. She is hardly eating anything, she is urinary incontinent about twice a week while feeling very weak and confused. She tends to fall asleep when watching television.
She is getting irritated with me if I point out any inconsistencies when she is talking with other people. I have tried to get help from various dementia charities but they all tell me that they cannot help until the doctor has specifically diagnosed dementia. Our doctor agrees that she is showing all the signs of dementia but until the tests have been done she cannot make a diagnosis.
Our middle daughter is proving to be a tower of strength . She lives 12 miles away from us but manages to go up her sister in London once a week to spend the night with her. Unfortunately, our son and Camilla have been at angry loggerheads for the past twenty years and will not speak to each other. The original causes of the rift are lost in the mists of time.
I am sorry that this all sounds so self-pitying but I am exhausted with lumbar spinal compression while trying to do my best for my wife and daughter. I don't know where to turn but thank you for reading - if you managed to get this far.
I feel for you. Very difficult when a loved one doesn't seem to have much awareness of memory problems and deteriorating health. Hopefully you can get your wife to have the assessments that are needed. Regarding the iron deficiency anaemia (do they know why she has this?), that will most definitely cause tiredness and potentially dizziness leading to falls depending upon how bad the anaemia is.
The GP hopefully has checked bloods for other contributing factors eg thyroid and kidney function and also Vit B12 and D deficiency?
I'm in the same position with my 85 yr old Mum. She had memory tests 5 yrs ago and they were just ok.
She agreed to have mood and memory assessment done again about 6 months ago, but by the time I spoke to the GP and they called her she'd forgotten the discussion we'd had and refused to have them.
She's deteriorated a lot in the last month or so and is becoming unable to manage even basic meal planning including making sure there's appropriate food in the house and her very short term memory is dreadful. All made worse by the fact that my 89 yr old dad disabled dad was diagnosed with dementia last February, plus his mobility is gradually deteriorating.
I wish you all the best