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

molliep

Researcher
Aug 16, 2018
79
Leeds
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.
Welcome @SherieMJ. We hope you will find this forum useful. Feel free to ask questions, start and join in with discussions, or read others' posts.

We are hosting some Q&A sessions on this forum with experts who have experience of both dementia and cancer. Lorraine Burgess, a Macmillan Dementia Nurse Consultant, hosted the first one last week. If you'd like to read through some the questions and Lorraine's answers, you can do so here. You can move onto the next page in the left top or bottom corners.

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

Best wishes,
Mollie :)
 

Onlyme_

Registered User
Dec 28, 2016
31
West Mids, UK
My mom had Alzheimer’s diagnosed just over 2 years ago and moved into a care home, then was diagnosed with lung cancer last August and given 9-12 months as it wasn’t treatable. We took the consultants advice and didn’t tell her about the cancer as she was going through a very weepy stage and was generally very confused. We just refer to it as lung problems or breathing difficulties. As time has gone by the Alzheimer’s has stripped her of all her hobbies and interests, she struggles with words and it’s very difficult to have any kind of normal conversation with her as she can’t answer questions and her sentences don’t make sense. On top of this now the lung cancer means she is in a lot of pain, she has gone off food and eats very little, can no longer stand or walk unaided and cries and shouts a lot. I wonder whether we should have told her about the cancer as she seems bewildered by her declining health but I’m not sure she’d understand if we told her now. The care home are marvellous with her. I visit every other day but find it overwhelming and upsetting. The local hospice are closely involved, although our intention is for her to see out her days in the home, and the GP and district nurse team are very supportive. A friend has made me feel bad for not visiting every day but I don’t feel I could go more often. I’m not sure whether the cancer is a blessing in that she won’t have to endure years of the Alzheimer’s, or whether it would have been less traumatic and painful without the cancer. I guess we’ll never know. Think the combined forum is a great idea. Thank you - I’ve found Talking Point to be a great help over the last couple of years.
 

Saxonhurst

New member
Feb 8, 2019
3
My husband has just been diagnosed with dementia in Alzheimer disease of mixed type. After many years of wondering and suspecting it we now have a diagnosis which is good and bad. Good in that we know what to deal but it was still a shock when we were finally told. My husband hasn’t retained the diagnosis and thinks he is just forgetful. I am going through a mixture of emotions - anger, sadness, fear etc. I don’t want to have to deal with this and I look at other people getting on with their lives and wish it was me. This all sounds very selfish but it is how I feel at the moment.
 

molliep

Researcher
Aug 16, 2018
79
Leeds
My mom had Alzheimer’s diagnosed just over 2 years ago and moved into a care home, then was diagnosed with lung cancer last August and given 9-12 months as it wasn’t treatable. We took the consultants advice and didn’t tell her about the cancer as she was going through a very weepy stage and was generally very confused. We just refer to it as lung problems or breathing difficulties. As time has gone by the Alzheimer’s has stripped her of all her hobbies and interests, she struggles with words and it’s very difficult to have any kind of normal conversation with her as she can’t answer questions and her sentences don’t make sense. On top of this now the lung cancer means she is in a lot of pain, she has gone off food and eats very little, can no longer stand or walk unaided and cries and shouts a lot. I wonder whether we should have told her about the cancer as she seems bewildered by her declining health but I’m not sure she’d understand if we told her now. The care home are marvellous with her. I visit every other day but find it overwhelming and upsetting. The local hospice are closely involved, although our intention is for her to see out her days in the home, and the GP and district nurse team are very supportive. A friend has made me feel bad for not visiting every day but I don’t feel I could go more often. I’m not sure whether the cancer is a blessing in that she won’t have to endure years of the Alzheimer’s, or whether it would have been less traumatic and painful without the cancer. I guess we’ll never know. Think the combined forum is a great idea. Thank you - I’ve found Talking Point to be a great help over the last couple of years.
Hi @Onlyme_, Thank you for sharing your experience of supporting your mom with Alzheimer's and lung cancer. It is such a challenging combination, with added challenges and responsibilities for the family/carer if your loved one isn't aware of their cancer. I know many others have shared similar feelings to you. I'm glad you have found the combined forum to be helpful. We are looking to hold more Q&A sessions in this area of Talking Point over the coming weeks which we hope will be informative and supportive for those affected by both dementia and cancer.

If you'd like to provide feedback on the combined forum you can do so here: https://leedsbeckettpsych.eu.qualtrics.com/jfe/form/SV_bHNNlt41Erw016t

Best wishes,
Mollie
 

sally13uk

New member
Feb 11, 2019
1
I am one of the many multi Carers ( people who have more than one family member they provide care for) My husband is my main cared for person he had rare medical conditions as well as memory loss due to a brain haemorrhage last year, I provide support and assistance to my brother who has learning disabilities and is now 58 , I am advocate and support to my husbands nephew who has learning disabilities and autism . We also care for my mum in law who has vascular dementia but lives independently with a huge care package in place but she has just been diagnosed with lung cancer, we have decided on a no treatment / palliative care pathway as she is unable to consent or understand and is oblivious to her dementia or her cancer. Some days I feel like I am spinning on the spot. Although stressful I insist on caring for my now 15mth old granddaughter 2 days a week as I refuse to miss out on what is likely to be my only grandchild . I am 50 this year .
 

SerenaS

Administrator
Staff member
Apr 7, 2011
13,297
London
I am one of the many multi Carers ( people who have more than one family member they provide care for) My husband is my main cared for person he had rare medical conditions as well as memory loss due to a brain haemorrhage last year, I provide support and assistance to my brother who has learning disabilities and is now 58 , I am advocate and support to my husbands nephew who has learning disabilities and autism . We also care for my mum in law who has vascular dementia but lives independently with a huge care package in place but she has just been diagnosed with lung cancer, we have decided on a no treatment / palliative care pathway as she is unable to consent or understand and is oblivious to her dementia or her cancer. Some days I feel like I am spinning on the spot. Although stressful I insist on caring for my now 15mth old granddaughter 2 days a week as I refuse to miss out on what is likely to be my only grandchild . I am 50 this year .
Hello @sally13uk

It sounds like you have a lot of caring responsibilities and I hope that Talking Point will be a helpful and supportive space for you. I'm going to send you a message directly with some more information about support for you.

Best wishes,

Serena
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi everyone,

We have created a new thread in the forum 'Caring for a person with dementia and cancer'. It is an interesting post by June Hennell, who cared for her husband with both dementia and cancer for two years.

'Living with Cancer and Dementia, Memories of Brian shared by his wife June Hennell MBE'. You can view June's story here.


Feel free to comment and share your thoughts.

Best wishes,
Mollie
 

Citroen 2cv

Registered User
Mar 1, 2019
20
Spain
My husband has just been diagnosed with dementia in Alzheimer disease of mixed type. After many years of wondering and suspecting it we now have a diagnosis which is good and bad. Good in that we know what to deal but it was still a shock when we were finally told. My husband hasn’t retained the diagnosis and thinks he is just forgetful. I am going through a mixture of emotions - anger, sadness, fear etc. I don’t want to have to deal with this and I look at other people getting on with their lives and wish it was me. This all sounds very selfish but it is how I feel at the moment.
I can fully relate to all your feelings. My mum has just been diagnosed even tho I have known for a long time. I now feel I have all this responsibility I have pow and pay for bills . It’s a responsibility I feel has been forced on me due to other family circumstances and the loss of my father a few months ago. I work as a live in carer so work for 4-6 weeks at a time then live with mum for a month. It is hard.
 

molliep

Researcher
Aug 16, 2018
79
Leeds
In case you missed it, we also shared an interesting blog post with End of Life Care specialist dementia Admiral Nurse, Debby Veigas, around the challenges that caring for someone with dementia and cancer brings.

You can view the blog here: https://www.dementiauk.org/the-challenges-of-living-with-both-a-diagnosis-of-cancer-and-dementia/

We would love to hear your feedback on the forum ‘Caring for a person with dementia and cancer'. Let us know what you think about this forum (and its activities) by completing the survey here.

Best wishes,
Mollie
 

molliep

Researcher
Aug 16, 2018
79
Leeds
We would still really like to hear your feedback on the sub-forum 'Caring for a person with dementia and cancer'. Please let us know what you think about the forum and its activities here. :)

If you have already completed the survey but have new feedback, you may complete the survey again.

Best wishes,
Mollie
 

Countryboy

Registered User
Mar 17, 2005
1,433
Cornwall
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 Talking Point.

View attachment 60149

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 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
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 Talking Point.

View attachment 60149

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 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
Hi Serena great to see the thread on dementia & cancer and all advise and support is important but unfortunately its not easy thing to discuss on an open forum but I’ll be interested to read any comments
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi Serena great to see the thread on dementia & cancer and all advise and support is important but unfortunately its not easy thing to discuss on an open forum but I’ll be interested to read any comments
Hi @Countryboy,

It may be helpful to click on this link >watch forum< then you will be notified when there are any new posts and discussions in the dementia and cancer sub-forum that you may be interested in reading :)

Best wishes,
Mollie
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi everyone,

In case you missed it, we had our second expert Q&A on dementia and cancer with Lorraine Burgess on 30th May. Lorraine is the first ever Macmillan Dementia Nurse Consultant in the UK, and is based at the Christie NHS Foundation Trust in Manchester.

We hope Lorraine's answers and advice will be a useful resource for those affected by both dementia and cancer. If you'd like to read her responses you can do so by clicking >here<. Lorraine's answers start on page two.

Best wishes,
Mollie :)