Dealing with your loved one not remembering they have cancer

Discussion in 'Caring for a person with dementia and cancer' started by molliep, Dec 13, 2018.

  1. molliep

    molliep Researcher

    Aug 16, 2018
    71
    Female
    Leeds
    One of the challenges of caring for a loved one with both dementia and cancer can be if they do not remember that they have a cancer diagnosis.

    We are sharing some experiences from carers of people with dementia and cancer. They reflected on the positives of their loved one not knowing they have cancer, but also spoke of the ways in which it made it more difficult for themselves, both emotionally and in providing physical cancer care.

    Feel free to comment with your own experiences of this or advice for others going through the same.


    Below is the experience of a woman caring for her husband with young onset dementia and bowel cancer:

    “And when your husband has dementia as well as cancer, I think what makes it difficult is you’re not simply there for support, you have to direct everything. They can’t help with their own care. It was very difficult to get him to understand to do certain things, and he was very frightened sometimes because he couldn’t quite understand what was happening and that was difficult to manage.

    “And my feeling was that because cancer is mechanical, if your partner doesn’t have dementia, you can fight it together as a team. When your partner has dementia, you’re fighting it alone. You really are. And you’re pulling a weight with you, which is lack of cognition that your partner has.

    “But also seeing him suffer, and not being able to help it or explain it in a way that he could truly understand or retain the knowledge, he might understand it in the moment but then he would forget. And that’s very hard to see. In many ways I imagine it’s like having a child and not being able to make them understand why they have to suffer.

    “Now, he doesn’t understand that he had cancer, which is a blessing. I found that out ‘cause when we were there I was talking to the doctor about something else and I mentioned his cancer treatment, he said “I had cancer?!”. Amazing isn’t it, that he doesn’t remember. I’m glad because he suffered, so I’m glad in a way that if something has to be gone I’m glad it’s that.”


    Have you experienced something similar? What advice would you give to others going through the same? We’d be happy to hear your thoughts.
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,458
    Yes I agree with that statement 'You can fight cancer' Yes you can, you know what it is and even how it works, you may win if you have the right weapons or you may not but you can have a blooming good go at fighting it as long as you know that you have it.

    Dad is on palliative care only. They can not cure him, he could not physically withstand the operation needed for that, neither could he cope with chemo so we are not really fighting it at all. He has three stents now, one in his stomach and two in his oesophagus and he may be offered a low dose radiotherapy at some point which we will probably take if offered. Can't turn it down if it will help him but for what purpose, just to give the dementia more time to rob dad of his remaining dignity and memories.

    Can't fight the dementia though and we are losing a small battle everyday. The dementia is far more wicked than the cancer as it has robbed dad of the will to fight. How do you fight something that you do not know is there. Dad looks fit as a fiddle at the moment, singing all the time and as happy as Larry. He has no pain or discomfort and I hope it stays that way a while longer but I also hope dad just goes to sleep for the last time one night before either of these monstrous diseases start to cause him pain or confusion as he mind tries to cope with what is happening.

    This is truly the most difficult thing that I have had to deal with in my life. It is always there and I am doing my utmost to make things nice for dad but it is hard, I want it to end before he gets worse, I really do and that is very difficult to deal with as well because he thinks he will live forever.
     
  3. molliep

    molliep Researcher

    Aug 16, 2018
    71
    Female
    Leeds
    Hi @Duggies-girl, Thanks so much for sharing your experience. It sounds like such a difficult position to be in. You are definitely not alone in the feelings you have.

    Best wishes,
    Mollie
     
  4. molliep

    molliep Researcher

    Aug 16, 2018
    71
    Female
    Leeds
    Hi everyone,

    I’ve shared another story below from a woman who cared for her father who had Alzheimer's Disease and lung cancer:

    “I would say in some ways it can be easier looking after somebody with cancer who’s got Alzheimer’s, because they don’t have the mental anguish and the fear that somebody who doesn’t have Alzheimer’s has. It’s difficult isn’t it, I suppose if he’d not had dementia you might have had different conversations with him, which might’ve been even harder than the ones we had. […] So I think the fact he’d got Alzheimer’s as well as cancer, on an emotional level, made it easier.

    “I think in terms of the practicalities, getting medication and reasoning with him and all of that, it was much more difficult. That was harder because you couldn’t reason with him or rationalise or tell him why. […] But because he had terminal cancer, you know there’s going to be an end. Whereas if he’d just got Alzheimer’s, I don’t know when that’s going to end. So when he was diagnosed with cancer, in some ways it was a blessing because we knew he was going to die of cancer. And I think probably my dad would’ve chosen that, he would’ve chosen to die knowing that we loved him and still knowing who we were. So we were grateful in a way that that happened.”


    Does this experience sound familiar? What has helped you?
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,458
    Actually it was an enormous shock to hear that dad had cancer because it had not occurred to me for even a moment and yes there was also a sense of relief that dad would not go down the dementia Road to the very end but then you realise that the cancer Road is not great either but it may be quicker and that may be easier for dad.

    I can only hope that dad does not complete either journey to the end and instead just slips away in his sleep sometime while he is still happy.

    Do I wish that for dad's sake or mine. I don't know but I know what dad would choose if he had any realisation of what is happening.
     
  6. LouLou23

    LouLou23 New member

    Mar 12, 2018
    8
    Female
    North Yorkshire
    #6 LouLou23, Jun 17, 2019
    Last edited: Jun 17, 2019
    Although it was a shock finding out mum has terminal lung cancer as well as Alzheimer's, I agree it will at least bring it all to a end and we may be spared how our dad died of Vascular Dementia.

    I am not sure if mum remembers she has cancer or not, I am taking her to the doctors for the first time after being diagnosed with lung cancer, to ask about possible related issues after having her lung drained, not sure how it will go. Do I mention about the Cancer before I take her, so it's not a shock if she has forgotten and it comes up? She has started coughing again which probably means the liquid has built up again so it is likely the doctor will say why? Not sure how it will go.
     
  7. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,458
    @LouLou23 Dad gets reminded at every appointment but he is never bothered about it and as soon as we are out the door he forgets. I don't mention it any more as there is no point really.

    Dad was diagnosed well over a year ago and at his most recent appointment we were told that his cancer is stable and exactly as it was all that time ago which means that we are in exactly the same place as we were then. I did not expect dad to still be here now especially as he has had no treatment but he is and that is good for him but the dementia is worse and for me the possibility of this going on for a lot longer than expected has become real.

    It's a hard slog but we can only keep going.
     
  8. molliep

    molliep Researcher

    Aug 16, 2018
    71
    Female
    Leeds
    Hi @LouLou23,

    I have pulled together some of the advice Macmillan Dementia Nurse Lorraine Burgess gave others for similar questions in our Q&As and given her responses below:

    'Cancer is a powerful word and often no matter how bad a person’s memory is they will remember they have it if reminded. Many of our patients come for treatment for their cancer and often forget why they have come but are accepting of the treatment when that are reminded it is to help with their cancer.

    People with dementia are usually pretty resilient when explaining and talking to them about their cancer. Be as honest as you can be. It is sometimes families that struggle rather than the person themselves as a way of wanting to protect their loved ones.

    Everyone is an individual and some take the news better than others. From my own experience many are quite accepting of the condition but some are too advanced in their dementia to understand what they are being told.

    If your mum does get confused or upset if it is mentioned you can perhaps say something like, “Mum do you remember the discussion about your lung cancer, that’s why we are at the doctors today to help with your cough.” Perhaps distraction may also help. It might also be worth asking the doctor to explain things in a simplistic way to avoid overload of information or confusion.'

    Lorraine's responses may be helpful although I know everyone's experience can be different. I hope the appointment went well, let us know what worked best in this situation for you and your mum.

    Mollie :)
     
  9. Moggymad

    Moggymad Registered User

    May 12, 2017
    323
    Female
    My mum was diagnosed with Non Hodgekins Follicular Lymphoma about 12 years ago before dementia. It was stage 4 so was in all 4 quadrants of the body including the bone marrow. It is a very slow growing cancer in the lymph glands & we were told if you were going to get cancer then this is the one to have. At the mention of the word cancer my mum immediately linked it to death especially as her own dad died from bowel cancer when she was only 10. Despite reassurances from the consultants & us she found it very difficult to hear the word cancer & not get upset about it so we just used to say blood appointments/ treatment. Mum managed to get through the full 6 or 8 courses of chemo which thankfully kicked it back into touch followed by 3 monthly appointments for blood tests & occasional scans. These appointments became 6 monthly then yearly. The treatment was not a cure. Shortly after completing the chemo mums memory started to be affected. The nurse said it could just be the treatment but to keep an eye on it. Turned out to be Alzheimers. Mum has no memory of what has gone before so that's something at least. We no longer go to appointments as mum is in late stage dementia & has to be hoisted. They did say some time ago that due to mums dementia & increasing frailty that no more treatment would be offered which I wouldn't want anyway. It is likely the Lymphoma is slowly growing as we were told it will return. Like @Duggies-girl I thought maybe the NHL would take mum first but it's looking more likely we are heading down the dementia road towards the end stages. I don't know which end is worse.
     
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,458
    @Moggymad my mum's sister had NHL and a similar story, she had the treatment and did well then developed dementia. She lasted another 7 years before dying in hospital after a fall and breaking a hip.

    Such a sad series of events.
     
  11. Melles Belles

    Melles Belles Registered User

    Jul 4, 2017
    358
    Female
    South east
    Hi @Moggymad my Dad had NHL and Alzheimer’s. He died in January from the NHL in his digestive system with and the AZ contributing. He was treated for it in 2012 and clear until Autumn 2017. He didn’t want treatmentI and we accepted his decision. It was absolutely horrible seeing him suffering and it was a relief when it was over. He weighed less than 7 stone and had barely eaten in a month. His last 12 weeks were spent 8n a CH where he had gone after 4 emergency hospital admissions in 3 months. I spent the last 6 months rushing up and down the motorway. Not sure how I feel now, nothing, still it seems surreal.
    Next month it will be 4 years since mum died from a major stroke. She would have preferred to go like that.
     
  12. Moggymad

    Moggymad Registered User

    May 12, 2017
    323
    Female
    #12 Moggymad, Jun 28, 2019
    Last edited: Jun 28, 2019
    I'm so sorry @Melles Belles. My dad died suddenly from a heart attack. I think it's preferable, despite the shock, to this long slow decline. I do hope they were able to keep your dad pain free. It's what I dread most for my mum. Yes @Duggies-girl it is a sad series of events. I hope your dad remains pain free & happy.
     
  13. hrh

    hrh Registered User

    Sep 16, 2017
    57
    The hospital are looking to see the extent of his cancer and work out his medication, its how we deal with mum and her dementia on what we feel will be their last meeting. It so sad.
     
  14. Moggymad

    Moggymad Registered User

    May 12, 2017
    323
    Female
    Such a sad & difficult situation for you all to deal with @hrh l hope they get to have some time together again before there's any further decline. Very difficult emotionally, I'm so sorry.
     
  15. LouLou23

    LouLou23 New member

    Mar 12, 2018
    8
    Female
    North Yorkshire

    HI @Molliep and @Duggles-girl,
    Sorry a while replying, I have read the had replies you send me and thanks for the support, I just take longer getting round to replying!
    As it turned out I needn't have worried the doctor soon realised mum did not remember she had lung cancer and talked around it. Before I went down to see mum she had a bad day and struggled to breath in the humid weather it turns out when I took her to the doctors it was a virus infection in the airways and not her lung, as I worried that it was. Anyway the doctor was very good with mum and took his time and we got through all my questions and made the referral to what I thought would be Macmillan but will be the local hospice Arthur Rank House.
    Also when my brother took mum the following week to her usual GP she was good as well and talked about the problem with, her memory or lung. Although she did say patients tend to live a long time with Mesothelioma and that the dementia is more of an issue. With that we didn't know where we were with mum, but then she may of had the cancer for 2-3 years already un-diagnosed. I've come to the conclusion its a race to the bottom as which will take her first barring in mind her weakened heart as well.
    Both me and my brother live away from mum so we are distance carers with a local private carer going in at least 3 times a day.
     

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