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Dementia and Cancer: Sharing experiences of family carers

molliep

Researcher
Aug 16, 2018
79
Leeds
I’m Mollie, a researcher at Leeds Beckett University and my work supports carers of people with both dementia and cancer.

For a recent research project, I interviewed family carers of people with both dementia and cancer. The aim was to find out about their unique experiences, discuss the challenges they face when caring for someone with both of these conditions, and to inform support services for carers of people with both dementia and cancer.

Dementia and cancer affect a lot of people, but not much research has focused on people diagnosed with both conditions, and there has been little focus on the unique experiences and support needs of their carers.

Most of the carers I spoke to did not know anyone else caring for someone with both dementia and cancer, and expressed a desire to connect with others in a similar situation to them for both emotional support and practical advice. This is why I am working with Alzheimer’s Society to support this new area on Talking Point for carers of people with dementia and cancer!

We will be sharing some of the personal experiences of the carers I interviewed on this forum, and this will relate to different aspects and stages of caring for a person with dementia and cancer. You are very welcome comment with your own thoughts and share your own experiences. If you are supporting someone with dementia and cancer we would love to hear from you and to make sure that we are providing the information and support that you need.

The aim of sharing these experiences is to start important and informative discussions on this forum about dealing with dementia and cancer together. We hope these discussions will be useful for those affected by both conditions, and help to connect you with others who are experiencing the same and who understand this challenging combination of conditions.
 
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Duggies-girl

Registered User
Sep 6, 2017
2,053
Hi @molliep My 88 year old dad has alzheimers and advanced eosophageal cancer, I would add that he has no idea that he is ill in anyway at all and thinks he is as fit as a fiddle and looks after himself very well which makes it difficult for me as I am left with all decision making as well as looking after his daily needs. He does in fact still live alone and is not troublesome in anyway, I can go home every evening safe in the knowledge that he will watch some TV and then take himself to bed each night quiet safely (at the moment)

He was diagnosed in April and has had no treatment other than three stents up to now. He can eat quite normally (thanks to the stents) and has put on almost three stone in weight since then, almost making up for the weight he lost between Christmas and his diagnosis mainly due to the high calorie diet I have given him. His oncologist said that chemo would not be good for him as it could make whatever time he has left unpleasant for him and I have to agree with her as dad has had almost eight months of good quality life and chemo would not have cured him anyway. In fact dad is very happy.

To be honest if dad did not have cancer he would probably be in a home by now as I am struggling but I cannot put dad in a home as I know that he is terminal and I want to make things as nice as possible for him for as long as possible. I have no idea how long he has but he was stage 3 in April so his time is limited. He actually looks better now than he has looked for more than a year but he does still have the cancer. I suppose I could get more support like having carers in and may have to at some time in the future but for the moment I will just plod on with caring for him. I get a bit of support from my brother here and there but that is only recently and the bulk of caring has been down to me.

The strain of looking after someone with dementia and cancer is enormous especially when they have forgotten that they are ill within minutes of an appointment. Dad had to have his third stent about six weeks ago and I had total care of him for four days which meant staying over with him to make sure that he did not eat before his appointment, then a whole day at the hospital to have the stent fitted, then making sure that he stuck with fluids only, before adjusting his diet over the next two days to include soft foods and then more solid foods because he is totally unaware of what he should eat or that he even has a stent.

I was due for a few days respite immediately after and was gone for a day before I came down with a very bad bout of flu that completely ruined my break and I am only now after about five weeks starting to feel a bit like normal. I have been told that this often happens and is a result of the immune system crashing after a period of intense stress. It was not nice and I have decided that I will not subject myself to that amount of stress again but I don't know how I can avoid it as life will get more stressful as his cancer progresses. I often wish it were all over but then I think of dad who is still the nicest and most polite man I have ever known and then the guilt kicks in. I could ramble on about guilt for a long time but I won't as it helps no-one, least of all me.

Sorry if that was a long post but I hope it helps you in some way.
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi @Duggies-girl

Thank you so much for sharing your experience. I’m sure others who are facing both cancer and dementia together will feel comfort from reading your experience and knowing that they aren’t alone.

Many of the carers I interviewed spoke of similar experiences to you. It must be very challenging when your loved one does not know they have cancer, adding more pressure and responsibility to you in coordinating their care, making decisions about their care and treatment, monitoring their symptoms and any pain, not always being able to discuss it with them etc. It’s so important for carers of people with dementia and cancer to receive support with this combination of conditions.

That must be very difficult for you. I am so sorry that you have been through such intense stress recently, and I’m glad to hear that you are recovering. Hopefully this space will help you and others affected by cancer and dementia to connect with and support each other, sharing your own experiences and advice.

Some of the carers I spoke to talked about receiving support from paid carers so their experiences may be helpful for you if you do decide to look at getting this in the future. We are also going to be hosting some Q&As with experts on this forum in the new year, so please do let us know if there are any specific topics you’d like us to cover or particular experts you’d like us to invite to host a Q&A related to cancer and dementia.

Best wishes,
Mollie
 

Camberite

Registered User
Dec 1, 2015
10
I find this to be an excellent forum and much needed. When the person you are caring for has cancer and Alzheimers it is difficult to plan ahead. Most couple where a partner has terminal cancer they usually plan their remaining time together. This is not an option when it is combined with Alzheimers/dementia! So it is a very lonely place to be for the carer. My husband Michael suffered both and was, I like to believe, totally unaware of either illness. He went from mild cognitive memory loss to advanced Alzheimers in 2.5 years. When he died last September he still knew me and our sons, which was a great comfort to us.
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi @Camberite,

I'm so sorry to hear about your husband. It must have been really hard for you. The carers I have spoken to said they found it comforting that the person they were caring for didn't know they had cancer, but that it made it more difficult for them as a carer because they felt they were dealing with it alone. Hopefully this forum can help to connect people going through the same and provide a social support network of others who understand the challenges of facing dementia and cancer together.

Do let us know if there are any topics you think we should cover in our posts and Q&As on the forum over the coming months.

Best wishes,
Mollie
 
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Angelap

New member
Sep 21, 2018
5
Where to start with my story.....
My father died 7 years ago having suffered from vascular dementia for several years. My lovely Mum cared for him until 2 months before his death when we persuaded her that he needed more specialist care. With heavy hearts we left him at a care home visiting daily watching the deterioration until the end. I truly believed that Mum would have felt a sense of release. On the contrary she kept saying that the shopping centre she has shopped at for years had moved then got confused as the stairs at the family home of 40+ years had vanished. It took a while to dawn on me that this wasn’t mourning but she needed help. Our GP and hospital staff were marvellous and a diagnosis of altzheimers was a bitter blow. I moved her into a lovely bungalow close to me & life continued until 18 months ago when she was unable to care for herself. I moved her in with me, luckily I was able to convert the garage into her home & look after her. Sadly I can’t recall the time when I went from daughter to Carer but the relationship definitely changed. The cancer diagnosis last December was a weird one, I was initially shocked, sad, lots of emotions, Even relief.
So dementia has me looking after a baby (feeding, cleaning, changing pads, watching over etc) the womb cancer has me dealing with an adolescent- bleeding, mood swings, belligerent.
Mum has absolutely no idea she has dementia or cancer. I struggle through each day tormented by the fact that I feel resentful (I try not to, but I’m trying to be honest)
I recently accepted some respite care for her. I can honestly say it was the best thing for both of us. I went on holiday with my daughter. My husband & sister called in regularly to visit mum where she had animal therapy, music therapy, lots of activity.
The morale of this tale is that none of us are super human, adult social service workers are amazing people who help with practical & emotional support.
After much discussion with medics palliative care for cancer was agreed, altzheimers takes the stress away from Mum as her memory clouds the reality. Me? I take each day as it comes - I can honestly say it’s the most difficult & challenging time. Any one out there that has managed to read through my ramblings and has any advice, I’m all ears.
Angela
 
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