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.
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.