| Care partner challenges |
Responsibilities |
I’ve had to take on all the responsibility, money, power of attorney, I have to do the maintenance. [P01, PDD] You will look around and whatever you see, I do. Everything. I move the furniture, I, I cook, I, everything. He can’t make a cup of tea, he can’t switch the television on, he can’t answer the phone, he can’t clean himself up when he goes to the toilet. I do everything. [P07, PDD] |
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Negative feelings |
I… have these times where I get so frustrated with him, I just want to walk out and go, become somebody nobody knows, nobody, you know… [P11, PD-MCI] I want to run away sometimes [cries]. Um… I cope better with it now, ‘cause I’m sort of getting a bit more used to it, but I feel sick [voice breaks with emotion], I feel resentment, I feel lost… It’s just everything. And [clears throat]… It’s like having a child, but, it’s a grown man and he’s my other half. He’s not a child, you know… Sometimes, in the morning I get in a panic ‘cause I think I can’t do this. […] I have no, no life and I have no future, I can’t do anything. [P07, PDD] I do feel resentful sometimes when I think he’s taking me for granted and I know I shouldn’t do but I do […] because I know if it was me he wouldn’t feel like that [cries]. [P02, PDD] I got to the point where I wasn’t sleeping, I wasn’t eating, I was crying, because I can’t go out and leave him. I’ve got no freedom. And the doctors put me on some tablets for stress and they are helping. But it affects your whole life, all my freedom has been taken away from me. [P12, DLB] |
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Motor & non-motor manifestations |
Dementia is very much more worrying. I mean with Parkinson’s there’s always the possibility of drug therapy to make that symptom better but there’s nothing for dementia. [P01, PDD] Once dementia’s there, you’re lost. If [my husband] was in a wheelchair I would cope admirably. If I had to bathe him, wash him, dress him whatever. Whatever physically I would cope. […] I’m used to caring, you know, but not the dementia it’s, it’s evil. And there is no joy at all with dementia, there just isn’t. [P07, PDD] I’ve coped with the Parkinson’s fine but it’s the dementia side of it which is the thing that gets me more than anything. […] If it was just Parkinson’s we could carry on but the Lewy Body is the main hurdle for us. [P12, DLB] |
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Worry for future |
I worry if he gets much worse I’ve got to look after him. I’m worried about that, I wouldn’t like that, you know. [P04, PD-MCI]
I do worry about the future, I do worry that what, what will become of us in the future because I can’t ever see us not being together but I worry what would happen if I went first. Who would look after him then? [P05, DLB]
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| Acceptance & adjustment |
Marital contract |
He’d looked after me, so it’s my turn now, I have to be the one for him. [P11, PD-MCI] When we got married you got married forever, you know. And that was it, for better, for worse and I always think you know, well you say in sickness and in health, well we’ve had the health bit and now we’re on the sickness bit you know. It’s just inevitable and you just have to accept it. […] And I’ve got to look after him because it’s what I signed up to do all those years ago you know [laughs]. [P02, PDD] |
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Social support |
I’ve not had a time where I’ve needed support […] but if I did need help then I would go to our children and they would [help]. [P08, PD-MCI] If I searched for the help I probably would get some and I could pay privately for somebody to come in. [P01, PDD] I’ve got a lot of friends that will say ‘Oh you’ve only got to ask’ and they will come. [P06, DLB] My children always say to me ‘There’s three of us looking after the dad, you are not on your own’, so I find that very re-assuring, they are very good. [P12, DLB] |
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Resilience & coping |
One of the things that I was taught to do was to analyse myself every night, so I would say ‘What can I do about that?’ Can’t do anything about it, what’s the point worrying about it. Cast it aside. And I do that you see, I am in a different position perhaps to a lot of wives, who’ve got husbands with Parkinson’s because I have lots of methods of coping. [P09, PD-MCI] Sometimes I do feel a bit hopeless but I tend to bounce back again… [I] might wallow in self-pity [laughs] for a couple of hours or so and then think oh well you know, I get on with it each day you know. [P02, PDD]
I am quite positive really with regards to the illness because to me you either fight it or you go down with it and both of us we’ll go down with it, so you’ve got no alternative but to fight it. And to look at things we can do, not things we can’t do, you can’t dwell on the past. [P12, DLB]
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