Caregiving is a marathon, not a sprint. I learned this first-hand, because for the first two years after I moved my father here, I visited him literally every day. I mean EVERY day. For TWO years. I was convinced that if I didn’t visit him and show my presence at the facility where he was living, that he wouldn’t receive the kind of care I felt he deserved. After all, we all know that the squeaky wheel gets the attention. When I started my business, however, I could no longer keep up that schedule and, frankly, it had worn me down. I had no life. I couldn’t go away, Go on vacation without worrying about him. Weekends were never about me or my family, it was always about making sure I got my visit in. It was only when I was forced to curtail my time, that it dawned on me. There was nothing I could do, no matter how many hours I put in.
I wasn’t going to save him.
He has a degenerative disease called Progressive Supra Nuclear Palsy (PSP) and because it is degenerative, every time I see him, I see a little less of him. This disease, when combined with Parkinson’s Dementia (which he also has) has robbed him of his language skills and physically walking has become very challenging. I haven’t had a coherent conversation with him in about 18 months. He is walking less, sitting in his wheelchair more, sleeping more during the day. This is the progression of his disease. It will march on, no matter how many days I visit him.
I am not going to save him.
He still lights up when he sees me. He still knows I am someone who loves him. Sometimes I am his wife, other times I am still his daughter. But I am certain he appreciates my visits. And I am now sure that he appreciates them even more, now that I am visiting less. It’s better for both of us because now when I come, even though we still struggle to communicate, at least I have something to tell him. Even if I am no longer certain that he understands me.
Now I visit him roughly 3 days a week. It seems like the right number. I’m not able to walk him every day like I had been or make sure that he is getting outside when the weather was nice or make sure he is being stimulated with activities. No. I cannot do that anymore. I have to trust that the facility is filling in those gaps. And I am still a very large presence there, even when I’m not there. They hear from me by phone, email and text when I need to tell them something. I am much better off and I know he would want it that way if he could communicate that to me.
I cannot save him. But I think I am saving myself.