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New to Dementia Talking Point: support for dealing with dementia and cancer

SerenaS

Administrator
Staff member
Apr 7, 2011
13,438
London
Are you caring for someone with dementia and cancer?

A new sub-forum for carers of people with both dementia and cancer is coming soon on Dementia Talking Point.

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It aims to provide carers of people with dementia and cancer with a place to connect with others who understand the unique challenges they may face and receive practical and emotional support. Carers will also have a chance to share their experiences.

There will be tailored information for people who are affected by both dementia and cancer.

Over the coming months, we will be planning to host Q&As with experts in dementia and cancer, who will answer your questions.

We are piloting this area on Dementia Talking Point to see if it is helpful and will be asking for your feedback and ideas.

I’ll leave this discussion open if you have questions or comments and will have more news to share soon.

Thanks,

Serena
 
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Lynnpin

Registered User
Aug 11, 2011
30
Tyneside
I think this is a great idea and wish it had been around earlier.

My beautiful partner, John, died in March this year. He was diagnosed with terminal cancer but the operation he underwent to remove one kidney, ureter and bladder cuff (Nephroureterectomy) unfortunately brought out an underlying Lewy Body Dementia that seemed to come on rapidly.

I felt useless in two ways and I still cannot decide which was worse.
 

SerenaS

Administrator
Staff member
Apr 7, 2011
13,438
London
Hello @Lynnpin

I'm very sorry to hear about your partner John. It sounds like it was a difficult time for you, as the cancer diagnosis then brought out the rapid progression of dementia. From what has been posted on TP, many other people who care for someone with dementia and cancer have similar feelings.

I hope that the project will help support many people who care for someone with dementia and cancer. You are very welcome to participate in discussions when the new sub-forum launches as I imagine you have a lot of experience that could be helpful to others.

Kind wishes,

Serena
 

Lynnpin

Registered User
Aug 11, 2011
30
Tyneside
Thank you Serena for your kind words. They are much appreciated.

I joined this forum originally because my mother was diagnosed with Alzheimers. Two weeks ago she had a severe stroke and I was summoned to the hospital on the second night and told that she wasn't going to make it. She did pull through but the prognosis is not very encouraging.

Caring for two people and running back and forth between both of them has been very hard and the guilt when leaving one for the other immense. The last thing I expected was that John would go first. Grieving when my mother didn't even know I was grieving made it that much harder to bear.

It's so cruel. Why do we need two diseases when one is more than enough!

Already this suggests another Talking Point thread: Dealing With Dementia and Stroke.
 

Duggies-girl

Registered User
Sep 6, 2017
2,028
[Thank you for this @SerenaS I am likely to post here a lot. Dad has oesophageal cancer and that I can deal with. The dementia is another thing altogether and I find it much harder to cope because of this. Caring for a person who has no idea that they are ill just makes everything twice as difficult.

Every time dad has an appointment he thinks that he is finished with hospitals and as fit as a flea whereas I just feel completely at a loss and having no time frame does not help.
 

SerenaS

Administrator
Staff member
Apr 7, 2011
13,438
London
Hello @Duggies-girl

It sounds like you're handling a lot of difficult challenges and I can appreciate the difficulty of supporting someone who doesn't know that they are ill. I really hope that this area will help with providing you with some support and connecting you with other people in a similar situation.

It may be helpful to click on this >watch forum< link as it will then alert you to when there are new discussions in this part of Talking Point.

Best wishes,

Serena
 

Camberite

Registered User
Dec 1, 2015
10
I think this is a great idea and wish it had been around earlier.

My beautiful partner, John, died in March this year. He was diagnosed with terminal cancer but the operation he underwent to remove one kidney, ureter and bladder cuff (Nephroureterectomy) unfortunately brought out an underlying Lewy Body Dementia that seemed to come on rapidly.

I felt useless in two ways and I still cannot decide which was worse.
 

Camberite

Registered User
Dec 1, 2015
10
Hi Lynnpin, it is so very hard. My husband Michael started with mild cognitive memory loss in 2015 which was assessed at a memory clinic after it was highlighted during a general health check. His cancer was diagnosed at a similar time. After two operations, one keyhole for bowel cancer (primary) and a major operation on his liver to remove the cancers. We were told at the time that these operations would escalate his condition and indeed they did to the point of early onset Alzheimers and then full blown Alzheimers. The thing is you were damned if you did have the operations and damned if you didn't! He was 72 last March.
 

Grable

Registered User
May 19, 2015
175
[Thank you for this @SerenaS I am likely to post here a lot. Dad has oesophageal cancer and that I can deal with. The dementia is another thing altogether and I find it much harder to cope because of this. Caring for a person who has no idea that they are ill just makes everything twice as difficult.

Every time dad has an appointment he thinks that he is finished with hospitals and as fit as a flea whereas I just feel completely at a loss and having no time frame does not help.
Hi Duggie's-girl

Sounds familiar! My mum had oesophageal cancer and vascular dementia. She did know she was ill, and with the first diagnosis of cancer told the doctors that she didn't want anybody - not even her - to know what stage she was at, nor did she want any treatment. Then things went downhill with both the dementia and cancer. What a nightmare for all concerned!
 

Duggies-girl

Registered User
Sep 6, 2017
2,028
Hi Duggie's-girl

Sounds familiar! My mum had oesophageal cancer and vascular dementia. She did know she was ill, and with the first diagnosis of cancer told the doctors that she didn't want anybody - not even her - to know what stage she was at, nor did she want any treatment. Then things went downhill with both the dementia and cancer. What a nightmare for all concerned!
Hi @Grable Dad was diagnosed in April at Stage3 with nodes involved. As he was so frail at less than 9 stone and looking like a skeleton I thought he probably would not have much longer and decided to make things as nice for him as possible.

Nearly 8 months later he weighs almost eleven stone and looks better than ever. This is a man who has had no treatment other than stents and he is eating like a horse. The dementia has not improved although dad is very happy. Yes it is a nightmare and I have no idea when it will end..
 

molliep

Researcher
Aug 16, 2018
79
Leeds
We have created a new thread for sharing useful information and resources with others affected by both dementia and cancer.

I have shared a link in this thread to a helpful guide developed by Macmillan and DementiaUK specifically for family members and carers of people with dementia and cancer.

Do you know of any resources that are particularly helpful? Feel free to share them here: https://forum.alzheimers.org.uk/thr...rces-dealing-with-dementia-and-cancer.113241/ :)

Best wishes,
Mollie
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi everyone,

We are having an Expert Q&A session on dementia and cancer on the 30th January 2.30-3.30pm with Lorraine Burgess, the first ever Macmillan Dementia Nurse Consultant.

Lorraine's unique role involves working alongside cancer specialists and nursing staff helping them to understand the needs of those with dementia and co-existing cancer; and supporting people with dementia and cancer and/or their family with one-to-one help as well as post-diagnostic education, advice on future planning and emotional support.

If you'd like to ask Lorraine a question, you can do so here or if you prefer you can send your question to talkingpoint@alzheimers.org.uk.

Best wishes,
Mollie :)
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hello everyone :)

Today we had a Q&A on dementia and cancer with Lorraine Burgess, a Macmillan Dementia Nurse Consultant from the Christie NHS Foundation Trust in Manchester. She gave some really detailed and helpful answers on topics that have come up previously on Talking Point relating to both dementia and cancer.

If you'd like to read her responses you can do so here: https://forum.alzheimers.org.uk/thr...-–-wednesday-30th-january-2-30-3-30pm.113825/

We hope it's a useful resource,

Best wishes,
Mollie
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi everyone,

We'd really love to hear your feedback on the forum ‘Caring for a person with dementia and cancer'.

We are looking to find out more about your experience of this forum, including the elements you find helpful, and the elements you find less helpful, in order to better support carers of people with both dementia and cancer. Your feedback may help to improve this space.

If you'd like to help, let us know what you think about the forum (and its activities) and any suggestions for improvement by completing the survey here.

You must be aged 16+ to complete this survey.

Best wishes,
Mollie :)
 

SherieMJ

New member
Feb 5, 2019
1
My mum has Vascular dementia and terminal lung cancer, I care for her full time and a group that covers both is a great idea. As mentioned before the cancer we can deal with but the dementia is a daily struggle.