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

molliep

Researcher
Aug 16, 2018
79
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
2,028
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
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
2,028
@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
@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!