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Managing cancer-related care or treatment for your loved one with dementia

molliep

Researcher
Aug 16, 2018
82
0
Leeds
When caring for a person with dementia and cancer it can be challenging to encourage them to co-operate with cancer-related care or treatment.

We are sharing some experiences from carers of people with dementia and cancer. They spoke of difficulties including getting their loved one to co-operate during investigations for the cancer; their vulnerability following operations; and managing their loved one’s stoma care.

What are your experiences of managing cancer-related care for your loved one with dementia? What did you find helpful? What advice would you give to others?


Daniel cared for his father-in-law with vascular dementia and cancer of the throat. His father-in-law had to have a laryngectomy. He had to be put on a nebuliser three times a day and had a stoma in his neck which had to be cleaned three times a day.

“He wouldn’t take any of his medications, we had to do that and the fight for him to take his medication was horrendous [...] and he used have a special liquid medicine, and he’d have about 7 tablets in the morning and another 7 at dinner and another 7 at night, so the battle to give him his tablets was incredible, absolutely incredible. So we’d have that fight every day.

“Sometimes you can’t help it, I didn’t shout at him as such but you’d raise your voice a little bit to get him to take them, because sometimes he just wouldn’t let you touch him. He’s got mucus coming out of his neck, I need to clean it and he won’t let me anywhere near him. ‘Cause the valve, the amount of mucus that comes out that hole is incredible. And you’d be quite worried at times ‘cause he’d start coughing, and it sounds really bad, so you think he’s choking.

“We ended up having to really get quite strong with him to tell him that you’ve gotta have it done. ‘Cause if the mucus blocks the hole then it can choke him. So that’s why it was every night, it’s got to be done every day. Regardless of what he would do and say, it had to be done. And he did try and take his valve out one night by himself, he tried to pull it out. And then he was in the hospital, and because he’d been fiddling about with it, the amount of blood in his neck was incredible.

“But yeah, the dementia made him stubborn. That was one of the main things, it just made him stubborn, it was his rules or no rules.”


Amy cares for her husband with young onset dementia and bowel cancer. She spoke of the difficulty of her husband not knowing not to do things to himself that may hurt him following surgery for his cancer:

“It was also difficult, because of the dementia he didn’t always know not to do things that wouldn’t endanger him in terms of his recovery, and that was very very challenging. And I did rely on friends because I felt I couldn’t leave him alone when he was recovering from the wounds which were really quite extensive of his surgery.

“It’s additionally, powerfully stressful because you’re afraid that he’ll physically hurt himself. It would’ve been very easy for him to physically hurt himself, because he was so vulnerable physically with all the stitches and the wounds and all that kind of thing. And that really adds a layer of stress that I just can’t [...] I was afraid to close my eyes, you know.

“Yeah, that was awful. It’s awful, and terrifying. I actually caught him once picking the staples out of his stomach.”


Does this sound familiar to you? If you’d like to add your own experiences and thoughts to this discussion please add them below.
 

Duggies-girl

Registered User
Sep 6, 2017
2,762
0
Dad is very compliant and does everything that I ask of him. He appears to have no pain and he probably would not complain if he had unless it was very bad. The only signs that he gives is when he has eaten, sometimes he taps his chest and has a little burp then says that he can't eat any more.

I have to ask him if his food is going down ok (it is apparently) and if he is feeling any discomfort (he's not at the moment) then he will say 'why do you ask' and I say 'Well, you have a stent dad' and he just says that he had forgotten about that. I don't want to keep reminding him that he has cancer although he is very unfazed when he is reminded but then he immediately forgets anyway.

It doesn't help me to keep an eye on any changes when he just sits there smiling and saying 'don't worry about me, I'm fine'

I know he is slowly deteriorating and he won't get any treatment unless the swallowing problem starts again but he gives me no clues. It's very hard.
 

Flavelle

Registered User
Jun 20, 2017
48
0
I was going to start jovially and then I read of your experiences molliep...I am so sorry. Dementia seems way less of a tragedy when sufferers have at least had a long life. Sending you love.
This is an update, any advice would be welcome but I probs won’t do any more than I am already:
So my Dad has prostate cancer and VD/ mixed type Alzheimer’s (& skin things which have been cut out in the past) life was filled with endless appointments to keep on top of the cancers till it became too much for us all. I have previously posted about how much I was expected to organise & juggle and in the end it didn’t seem to be in his interest anymore. I know what he wanted when he had capacity and try and represent that in the way I guide his life now. Therefore I spoke to the oncologist and explained I wasn’t prepared to ferry Dad about for more endless injections and investigations as it made him sad. Medical profession has been understanding but now I don’t know what to expect. My dilemma is working out what aspects of his physical deterioration are down to dementia/ dehydration/ down days or whether some might indicate cancer has got to his bones. Hard to tell...anyone in a similar situation?
Oh, Mum has advanced Alzheimer’s and a shadow of some description on her lung but moving from place to place for this to be investigated she greatly disliked (she needs two handed lifting) so she had a nice chat with a doctor and made it very clear she didn’t want to know. She has more than enough diagnoses anyway.
 

Duggies-girl

Registered User
Sep 6, 2017
2,762
0
@Flavelle I have just read my previous post from January and realise that I am still in the same place that I was then. The cancer has not moved on but the dementia has which just makes things a bit more difficult than before. We don't have too many appointments, a blood test next month with a trip to see the oncologist a week later. It's all such an effort and for what. I don't know but we will go anyway.

I have the same dilemmas as you, is dad not finishing his breakfast because his tumour has grown or is he just not hungry. Does he sleep all day because of the cancer or is it the dementia.

I know I am doing something right because he is happy enough but everything is complicated by the dementia. The cancer I can deal with but the dementia is a pig.
 

Flavelle

Registered User
Jun 20, 2017
48
0
@Flavelle I have just read my previous post from January and realise that I am still in the same place that I was then. The cancer has not moved on but the dementia has which just makes things a bit more difficult than before. We don't have too many appointments, a blood test next month with a trip to see the oncologist a week later. It's all such an effort and for what. I don't know but we will go anyway.

I have the same dilemmas as you, is dad not finishing his breakfast because his tumour has grown or is he just not hungry. Does he sleep all day because of the cancer or is it the dementia.

I know I am doing something right because he is happy enough but everything is complicated by the dementia. The cancer I can deal with but the dementia is a pig.

Thanks for your response, I agree a bit of contented dementia indicates some things are going right. The thing is the confusion can then almost cushion the sufferer, tricking nerve endings so they don’t feel pain...or muddle it up with feeling cold perhaps? I can see my Dad has a beetroot red face from heat but he’ll go on about the chill...even to a point of collapse when unchallenged. I’m sure some behaviours indicate pain but it took an age for his broken pelvis to be diagnosed because dementia confused the medical ‘professionals’ too. All best...am disappearing into my gardening zone now while they snooze!
 

Duggies-girl

Registered User
Sep 6, 2017
2,762
0
@SMacGregor I had many appointments with dad and his consultant. She was very nice but also very honest and straight with the facts. She always asked dad how he was and he said he was fine (didn't know why he was there in fact) then she would ask him if she could ask me some questions about how he is getting on. He always agreed and on more than a few occasions he actually told her that she would be better off asking me about him because I knew more about it than he did which was true.

Dad never had any aggressive treatments only palliative care and he did extremely well. His consultant said that he was a perfect advert for non aggressive treatment for the elderly.

Sometimes treatment can do more harm than good to elderly and frail dementia patients. Dads consultant said that chemo could make him very ill and possibly do a lot of harm so we agreed to watch and wait and it paid off because dad had a very comfortable couple of years at home before he eventually died. He was happy but became increasingly frail after a bout of pneumonia and 3 weeks in hospital that put him back physically and mentally and his body would not have coped with any treatment after that.

You don't say how old your mum is as that may make a difference. Dad was 88 when he was diagnosed so it was definitely quality over quantity. Dads cancer was terminal with no chance of a cure so we were just delaying the inevitable while trying to make things nice for him and I think we did that. I think that you should try and be at the appointment if possible, your brother sounds like he may not be a lot of use.
 

BridgetK

New member
Jun 3, 2021
1
0
My mum has Myeloma and dementia and the consultant has just told me she needs new treatment. She was happy thinking she was cured, not that she ever fully grasped what was wrong with her. Now they will sit and have a discussion with her and ask her what treatment she wants - they know she has dementia but they just don't seem to understand at what level. After her last consultation, they said 'oh she is always so smiley and denies any pain or symptoms' - it's so difficult as without dementia she was always one to ignore anything she did not like, and now it's all just worse. She has never acknowledged she has dementia and just concedes to having an appalling memory - she is quite capable of pulling the wool over the consultants' eyes for five minutes but then he does not have her phoning him up claiming she is sitting outside in the cold when clearly she is in her lounge in front of her TV. Really not sure how to deal with it all. I don't live near enough to go with her to appointments so her carer or my brother will go and my brother can swing from thinking she is really bad to not so bad depending on whether he agrees with what she is saying.
I've just started searching this forum, and read your post - I have found myself in an almost identical situation. My mother is 84, had a bowel cancer diagnosis 18 months ago, and it was decided that her treatment would be palliative only - she did not want invasive treatment (she'd cared for her husband through an awful bladder cancer experience, and had herself undergone a double by-pass only a few years earlier) and, anyway, she was deemed not fit enough for surgery, chemo or radiotherapy. We've carried on since diagnosis, noticing poor memory and confusion creeping in, but manageable. Similar to yourself, she was denying symptoms and pain - and has also denied that she has cancer - we weren't sure if this was a coping mechanism or she genuinely 'forgot' she had cancer. She is also good at pulling the wool over people's eyes, and appearing fully compos mentis. A few days ago, we had to call an ambulance, as she nearly collapsed at home - turns out she was severely anaemic. Several blood transfusions and an iron infusion later, she is much better medically. I went to see her yesterday, and she was a little confused, but today when I visited her in hospital, she thought I was her niece, not her daughter - I kept telling her who I was, but it made no difference. She talked absolute rubbish the whole time - but appears very contented and happy. We are now facing a formal diagnosis of dementia - it seems like the hospitalisation has tipped a mild 'confusion' into full blown dementia, and suddenly faced with all sorts of decisions about whether she can go home, care homes, assessments etc. Not sure where we are going from here or how long this will continue for.
 

AwayWithTheFairies

Registered User
Apr 21, 2021
140
0
My mum is having cancer treatment for a cancer detected by chance she had no symptoms, but meanwhile has gone downhill on the cognitive side. The treatment itself involved imaging and placement of a venous catheter so not painful in itself but she was not comfortable staying still for hours on back and and couldn’t tell them she needed the loo so kept shifting, then bled too much so was kept overnight when she was meant to go home, and became I think delirious. I think this gave her a big setback and she has got a bit better since, but still on the boundary of ability with living alone (and well over it for prudence with regard to driving and loss of control of her finances and scams). So the treatment seems to have been quite successful at least for now, but there is only a 25% 5 year survival even so. Now I wonder if this medical triumph has just condemned her to the misery of dementia and a longer suffering, with a competition between two illnesses to make her remaining time worse!
 

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