Being a caregiver is not a new experience for me, or my husband. We took care of my Mama and my husband's father (Pop), both of whom had Alzheimer's Disease. And I took care of my Daddy some years ago when he was not expected to live after having a heart attack. He "graduated" from Hospice that time, to the amazement of everyone. We've been helping him live on his own for some years, as he is legally blind.
So, what's different about care giving this time? For one thing, I'm nowhere near as strong physically, so things I used to be able to do, such as transferring from wheelchair to car, I can't do any more. Daddy is a lot heavier than Mama or Pop was, and I have to pay attention to my own balance as I help him get in and out of his chair, or try to keep him from falling when he uses his walker. So, this time my DH (dear or darling husband) has had to do more and more to help out than he had to do before.
I do take care of the personal things, like helping Daddy get dressed and taking him to the bathroom, changing Depends, etc. He accepts that kind of intimate help from me better than he would from his son-in-law. I sit with him until he finishes eating, watching for choking and encouraging him to eat more. But my wonderfully supportive husband grocery shops, cooks, washes dishes, and does the laundry, so my energy can be conserved for helping Daddy.
I'm not getting much sleep at Daddy's house, so we decided I needed to get away from the caregiving at least part of the week. We have a wonderful paid caregiver in our community, who helped us before when we needed her, and we were fortunate enough to be able to hire her for several days spread over the week. That means I can get away from the stress of dealing with his slow, but sure, deterioration. I'm definitely feeling the stress of watching Daddy get worse, instead of better. I am much more nervous this time than I was when Mama's and Pop's health was failing, and I blame that on my own health. The trembling in my arm and leg shows up when I'm caring for Daddy for a while, which makes me more nervous, I think, than I would be if I weren't shaking.
Parkinson's has taken a lot of my confidence away from me, as I sometimes struggle to think clearly. I panic much more quickly, and can't make decisions as easily as I used to. I forget things, too, so my hubby has taken more and more responsibility for pill times and such.
We have Hospice coming to help, too. They take care of bathing him, the nurses check on him frequently, and we can call them any time, day or night, if we need them. Without Hospice to give us some professional feedback on his condition, we wouldn't be able to keep Daddy at home, as it's all but impossible to get him to the doctor's office.
So, caregiving when I, as the "primary" caregiver, am dealing with medical problems is not nearly as easy to manage as it was when I was a little younger, and a whole lot stronger. It is doable, though, with the fantastic support from my husband and the professional support of Hospice and a paid sitter.
Daddy will be 102 in March, and we're doing everything we can to maintain his dignity and allow him to finish his days in his own home. I know if we have no choice but to move him to a nursing home, that I will feel terrible, but I won't have a reason to feel guilty. I've done my best.
Like many of you, Rosemary has battled tummy and digestive problems and sleep deprivation. Of course there are always the ailments that have nothing to do with Parkinson's disease such as back pain. Nevertheless, Rosemary does not blog a pity party. She shows us life has many fulfilling moments; and, that she is able to find answers to some of her dilemmas. Thank you Rosemary for sharing with everyone; and, for daring to admit when you struggle. Almost everyone with Parkinson's struggles, and that is why your words are so important here. For your efforts taking care of your husband's father and your own parents we designate you a Hero in Parkinson's Disease.