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‘Caring for a person with dementia and cancer’ - an introduction

molliep

Researcher
Aug 16, 2018
82
0
Leeds
Welcome to Dementia Talking Point’s new sub-forum ‘Caring for a person with dementia and cancer’.

I’m Mollie, a researcher from Leeds Beckett University. I recently conducted an interview study exploring the experiences, challenges and supportive needs of family carers of people with both dementia and cancer. I have now teamed up with Alzheimer’s Society to launch this online forum dedicated to dementia and cancer to help support those affected by both conditions.

This new sub-forum aims to provide carers of people with dementia and cancer with a social support network of others who understand the unique challenges they may face, and a space for them to seek practical and emotional support, and to share their own experiences.

In the coming months, we will be hosting Q&As on the sub-forum with experts in dementia and cancer, which we hope will be extremely valuable and informative for those affected by dementia and cancer.

We are piloting this area on Dementia Talking Point to see if it is helpful, and will be asking for your feedback and ideas in the form of an online survey about what elements of the sub-forum are most helpful for carers of people with both dementia and cancer and what support you would most like to see in the future.

For more information about this project and/or the sub-forum, please send me a message or comment on this thread.

Best wishes,
Mollie
 
Last edited by a moderator:

jaymor

Volunteer Moderator
Jul 14, 2006
13,723
0
England
Welcome Mollie, I'm sure your thread is going to be of great value to our members who are facing dementia and cancer together.

Looking forward to seeing a long and useful thread appearing, good luck.
 

molliep

Researcher
Aug 16, 2018
82
0
Leeds
Welcome Mollie, I'm sure your thread is going to be of great value to our members who are facing dementia and cancer together.

Looking forward to seeing a long and useful thread appearing, good luck.

Thank you Jay. I am looking forward to it and hope that it will be helpful.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Yes thanks Jay. Funny I used to think that at least Dementia was not as sad as cancer - and now we may be facing both. However with my husband’s dementia being fairly high level - I think he will not have to worry unduly - unless I really stress a dubject and repeat it - he will just forgot it. And that’s an advantage for him I think. I don’t want him to worry.
 

Pampas80

New member
Sep 29, 2017
6
0
Hi Mollie
I’m interested in your thread regarding dimentia and cancer and will watch with great interest. I have an additional problem as my wife’s carer in that she also has an 80% loss of sight due to glaucoma. It is The Altzheimers that causes us/me so much stress and as all three conditions are untreatable frankly the end can’t come soon enough.
Sorry
 

Duggies-girl

Registered User
Sep 6, 2017
2,471
0
Hi Mollie
I’m interested in your thread regarding dimentia and cancer and will watch with great interest. I have an additional problem as my wife’s carer in that she also has an 80% loss of sight due to glaucoma. It is The Altzheimers that causes us/me so much stress and as all three conditions are untreatable frankly the end can’t come soon enough.
Sorry

I understand that feeling @Pampas80 Dad has had dementia for about 8 years then 18 months ago we learned that dad had cancer as well as dementia. Advanced they said, no treatment as he was too frail and there was the dementia to consider as well. There was talk of hospice and morphine patches to keep dad comfortable. This all scared the hell out of me and I just decided to keep dad at home and make everything as nice as possible for him. I felt like there was an end in sight so I would just do my best for him. Well here we are 18 months later and it appears that dad's cancer has stabilised and this is likely to go on a lot longer than I ever anticipated. I feel like I am stuck in some never ending nightmare and that 'end in sight' has been snatched away from me like some cruel trick and how awful am I to even think that way because dad is as 'happy as Larry'

I have said it before and I will say it again but dad's cancer has paled into insignificance compared to the dementia.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
0
I understand that feeling @Pampas80 Dad has had dementia for about 8 years then 18 months ago we learned that dad had cancer as well as dementia. Advanced they said, no treatment as he was too frail and there was the dementia to consider as well. There was talk of hospice and morphine patches to keep dad comfortable. This all scared the hell out of me and I just decided to keep dad at home and make everything as nice as possible for him. I felt like there was an end in sight so I would just do my best for him. Well here we are 18 months later and it appears that dad's cancer has stabilised and this is likely to go on a lot longer than I ever anticipated. I feel like I am stuck in some never ending nightmare and that 'end in sight' has been snatched away from me like some cruel trick and how awful am I to even think that way because dad is as 'happy as Larry'

I have said it before and I will say it again but dad's cancer has paled into insignificance compared to the dementia.

((((((((((((((((((((Hugs)))))))))))))))))))
Take care of yourself
Xx
 

Pampas80

New member
Sep 29, 2017
6
0
I understand that feeling @Pampas80 Dad has had dementia for about 8 years then 18 months ago we learned that dad had cancer as well as dementia. Advanced they said, no treatment as he was too frail and there was the dementia to consider as well. There was talk of hospice and morphine patches to keep dad comfortable. This all scared the hell out of me and I just decided to keep dad at home and make everything as nice as possible for him. I felt like there was an end in sight so I would just do my best for him. Well here we are 18 months later and it appears that dad's cancer has stabilised and this is likely to go on a lot longer than I ever anticipated. I feel like I am stuck in some never ending nightmare and that 'end in sight' has been snatched away from me like some cruel trick and how awful am I to even think that way because dad is as 'happy as Larry'

I have said it before and I will say it again but dad's cancer has paled into insignificance compared to the dementia.
 

Pampas80

New member
Sep 29, 2017
6
0
Hi Duggies-girl
I truly feel for you in your position.
My ‘patient’ is my wife so of course I expected to be here until the end but didn’t expect our twilight years to be such a nightmare. She has lost a lot of her eyesight as well as dementia and cancer and she doesn’t take to her condition at all. Most of the time she is miserable hostile and obstinately aggressive.
Pain relief doesn’t work very well and it’s painful to walk but demands to go out of the house even on her own!! (for independence)
I tearfully and gratefully accept your hugs and return the same
❣️
 

Annakey

Registered User
Oct 26, 2018
33
0
Welcome to Dementia Talking Point’s new sub-forum ‘Caring for a person with dementia and cancer’.

I’m Mollie, a researcher from Leeds Beckett University. I recently conducted an interview study exploring the experiences, challenges and supportive needs of family carers of people with both dementia and cancer. I have now teamed up with Alzheimer’s Society to launch this online forum dedicated to dementia and cancer to help support those affected by both conditions.

This new sub-forum aims to provide carers of people with dementia and cancer with a social support network of others who understand the unique challenges they may face, and a space for them to seek practical and emotional support, and to share their own experiences.

In the coming months, we will be hosting Q&As on the sub-forum with experts in dementia and cancer, which we hope will be extremely valuable and informative for those affected by dementia and cancer.

We are piloting this area on Dementia Talking Point to see if it is helpful, and will be asking for your feedback and ideas in the form of an online survey about what elements of the sub-forum are most helpful for carers of people with both dementia and cancer and what support you would most like to see in the future.

For more information about this project and/or the sub-forum, please send me a message or comment on this thread.

Best wishes,
Mollie
I'm sure this group will support some people but I don't want to simply talk about my problems and have some one say 'there, there'. I want concrete, physical help. Caring for my husband with dementia and mouth cancer is driving me to a breakdown. I simply don't want to be responsible for him any longer. What happens when a carer has had enough? Do I just walk away? Or do I have to fight to get help - I've no energy to do that. Everyone says they understand but no one has said if you can't cope we will take over his care. I am expected to deal with a complicated medication routine including the administration of morphine and trips to the hospital every day with a man who can't remember how to take meds or why he has to go for treatment every day and eats hardly anything at all but won't take the fortified drinks.

I've had enough. I am not a nurse and I don't want to be a carer. I want out.
 

Annakey

Registered User
Oct 26, 2018
33
0
Welcome to Dementia Talking Point’s new sub-forum ‘Caring for a person with dementia and cancer’.

I’m Mollie, a researcher from Leeds Beckett University. I recently conducted an interview study exploring the experiences, challenges and supportive needs of family carers of people with both dementia and cancer. I have now teamed up with Alzheimer’s Society to launch this online forum dedicated to dementia and cancer to help support those affected by both conditions.

This new sub-forum aims to provide carers of people with dementia and cancer with a social support network of others who understand the unique challenges they may face, and a space for them to seek practical and emotional support, and to share their own experiences.

In the coming months, we will be hosting Q&As on the sub-forum with experts in dementia and cancer, which we hope will be extremely valuable and informative for those affected by dementia and cancer.

We are piloting this area on Dementia Talking Point to see if it is helpful, and will be asking for your feedback and ideas in the form of an online survey about what elements of the sub-forum are most helpful for carers of people with both dementia and cancer and what support you would most like to see in the future.

For more information about this project and/or the sub-forum, please send me a message or comment on this thread.

Best wishes,
Mollie
Looking back there has hardly been any response to this thread over the year and none form the researcher so another dead end. I give up.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
0
Looking back there has hardly been any response to this thread over the year and none form the researcher so another dead end. I give up.

please don’t give up, it’s so easy to feel isolated by all this. call 111 ask for a Dr to call today. Carer breakdown is an awful experience, the duty doctor will have emergency numbers for help to be put immediately in place. I have experienced this help being offered on several occasions.
sending love & hugs & strength for you to be able to do this
X
 

TNJJ

Registered User
May 7, 2019
1,930
0
cornwall
I would phone 111 today.But he needs an urgent assessment by SS .They have to take care of him by “Duty of Care”.
 

molliep

Researcher
Aug 16, 2018
82
0
Leeds
Looking back there has hardly been any response to this thread over the year and none form the researcher so another dead end. I give up.

Hi @Annakey,

I'm so sorry to hear you are struggling so much at the moment.

We have some other threads on dementia and cancer, they are located >here<. It is a sub-forum that can be found at the top within the forum 'I care for a person with dementia'.

I know talking to others may not be the support you're looking for, but in this sub-forum we have also held some expert Q&As on dementia and cancer with Lorraine Burgess, the only Macmillan Dementia Nurse in the UK. So perhaps some of the information and advice she has given may be more helpful to you in finding out about more concrete and physical help that may be available to you? I know she covered ways to access practical support you may be entitled to in some of her answers (e.g. holistic needs assessment, carer's assessment, admiral nurse services, macmillan nurses) and also answered some questions around potential ways to make adherence to treatment, your loved one forgetting their cancer and trips to the hospital easier for you. The Q&As can be found >here< and >here<, Lorraine's answers to the questions begin on page 2.

There is also a support booklet specifically for carers of people with both dementia and cancer which covers emotional, practical and financial support you can access. It can be found online >here<.

I hope this can help, and I really hope you get the support you need,

Best wishes,
Mollie
 
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Annakey

Registered User
Oct 26, 2018
33
0
Hi @Annakey,

I'm so sorry to hear you are struggling so much at the moment.

We have some other threads on dementia and cancer, they are located >here<. It is a sub-forum that can be found at the top within the forum 'I care for a person with dementia'.

I know talking to others may not be the support you're looking for, but in this sub-forum we have also held some expert Q&As on dementia and cancer with Lorraine Burgess, the only Macmillan Dementia Nurse in the UK. So perhaps some of the information and advice she has given may be more helpful to you in finding out about more concrete and physical help that may be available to you? I know she covered ways to access practical support you may be entitled to in some of her answers (e.g. holistic needs assessment, carer's assessment, admiral nurse services, macmillan nurses) and also answered some questions around potential ways to make adherence to treatment, your loved one forgetting their cancer and trips to the hospital easier for you. The Q&As can be found >here< and >here<, Lorraine's answers to the questions begin on page 2.

There is also a support booklet specifically for carers of people with both dementia and cancer which covers emotional, practical and financial support you can access. It can be found online >here<.

I hope this can help, and I really hope you get the support you need,

Best wishes,
Mollie
Well thanks to the hospital's total disregard for my welfare I have been driven to a breakdown and I'm stranded at my daughter's house in Birmingham. I struggled for four weeks trying to get my husband to hospital to have his radiotherapy, take his meds and eat and drink. They ignored me telling them how hard it was because of his dementia and how I was finding it hard to cope until I broke down at review meeting. The Macmillan nurses were very kind and saw I couldn't carry on and tried to get him admitted because he hadn't eaten or drunk anything for days.

He refused to stay, hit a nurse and ran off 3 times before the police brought him back. They kept him in and said he would be observed for 48 hours and hydrated and fed. I went home relieved and hd the first undisturbed night for months. Next morning, as I was getting some things together for him I had a phone call to say he was being released as he had capacity because he could wash and dress himself. I collapsed and locked myself in the house and told them I couldn't have him home. They ignored me and let a very sick man out to catch a bus before my stepson could get to the hospital. A friend tried getting a doctor for me but there was a long delay so she took me to a place of safety and my son in law drove from Birmingham and took me here.

I'm pushed out of my home. husband has carers in 3 times a day to give him meds and someone takes him for his treatment. To say I am angry is not enough. He isn't getting proper 24/7 care and I'm marooned in Birmingham in a house with young children where I can get no peace. I'm diagnosed with depression and expected to see a counsellor which I hate.

I simply want him in care and my home and life back,. But I've to wait another week for him to be assessed again and knowing how social services work to save money I expect they will expect me to put up with him still at home and scant help from anyone else.

If this happens I will strike. No care whatsoever and I won't even speak to him I am, that desperate. I shall have no life at all. This is torture - plain and simple.