A PRAYER JOURNAL – Number Two, by Bruce Maloof (name changed for anonymity), a caregiver.
Lord, I am in real trouble. I hate being a caregiver. I am awful! I don’t see how people can sustain caregiving over large amounts of time. I have been with Sally since 5:00 pm last Friday. Now it is after 2:00 on Sunday. I won’t get any relief until 1:30 pm tomorrow. I know I love my wife. But I just don’t know what to do with her. She has absolutely no interests. She can’t do anything on her own. She doesn’t read. She doesn’t like watching TV. She doesn’t write to anyone. She doesn’t know anyone by name anymore. She can’t think of anything she ever wants to do. Yet she can’t sit still.
She keeps wanting me to create activity. She wants to go somewhere. She often asks to go home but can’t tell me where it is. Yes, she can play the piano but does very little of it. And when she does others have to encourage her to do it.
I think the worst part of caregiving is trying to communicate. It is impossible. She doesn’t remember any names of things. She can’t describe anything she needs or wants because everything has a name. Everything is just an “it” or “thing” or “over there” or “they, them, he, or she.” Nearly all, I mean, all the time I have no idea what she is talking about. Most of the time her sentences don’t make any sense. Thus, just to get along and not make her feel bad I say, “okay”, “yes” or “no”, and “maybe”, “if you say so”, “you’re probably right”, “it’s alright”, and “I guess so”, all the while having no idea what her babble is about. In short, I lie a lot, not wanting her to feel bad.
She shadows a lot!!! Right now, I have that rare experience of being able to be in my office alone and journal. I don’t know where she it. I don’t want to go looking for her, for if I do and I found her she will start shadowing me again.
I hate me having a “poor me” attitude. I want to show respect and love for my wife. I know that I love her but with active Alzheimer’s disease I can’t find her. Once in a while my Sally shows up or flashes through her foggy brain. At those times I know how much I miss her. I tear up. I want to hug and embrace her. I miss her so, so much. But most, or nearly all the time she is not the Sally that she used to be. Her Alzheimer’s disease has destroyed much of who she was. She is losing her personhood. She is becoming less and less of a someone.
I know that I cannot stop the progression of Alzheimer’s disease in her brain. I’ve tried. In fact, I am still trying without any help from her. She lost the will to fight the disease. Now she just fights me and others who try to do the best we can to slow the disease. I must make sure she takes her pills. I tried to get her to work with flash cards for the names of things, but she refuses to try to learn. And it is probably true, that she can’t learn anything anymore. She will only forget what she still knows more and more as the disease continues to destroy her brain.
Any worst of all, she doesn’t believe any of this. She thinks she is perfectly normal, and it is everyone else who is being mean and won’t let her do things. Lord, I don’t know when it is time to give up hope trying to heal her. If I give up and just let her be, eat what she wants including wheat, dairy, corn, and sugar – especially sugar, she will decline very rapidly. And that would mean that I would have to put her into a memory care facility. That is going to be very hard to do. It is certainly not yet.
I don’t know what I should expect from you. I don’t seem to be very good at changing my personally this late in my life. And I don’t know if you can remold me from the inside out. It is not that I don’t have faith, but that faith is focused more on who you are and what you did for me and all humanity in the ultimate sense more than my minute-by-minute today time. I don’t expect miracles at our age. Both Sally and I are going to die in the near future from one cause or another.
From where I stand, you have already blessed Sally and me as much as I can possibly expect. You have blessed me way, way beyond my worthiness. I have absolutely no room for complaining. So why do I write this journal? It sure looks like complaining to me.
Maybe it is just the question of how do I cope? How do I deal with frustration, heartaches, and the real pain of seeing my love slowly disappear, slowly die? How do I maintain my hold on you when I judge myself so heartless and unloving which is exactly opposite from you?
I know, live in relationship with You one day at a time. But doesn’t that need extend to others? If it doesn’t then it seems that the relationship is self-serving or worse, meaningless. I don’t want that. If you know of a way forward that is pleasing to you, I need you to hit me on the side of the head to discover, realize, acknowledge, or understand a true way forward. I really ask for and need your help. When it comes to Sally’s Alzheimer’s disease, I am totally lost. Yes, I am spending a lot of money trying to get help, but I am still totally lost.
Amen
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