Dad and I talk together pretty often about Mom’s daily condition. We look at her new behaviors and we try to analyze what each one means. Is she getting worse? Is this new? Is she sick or is her mind just disconnected? Melinda and Dad also analyze every moment especially the medical ones. Everything that might be something is contemplated. All of us are tuned into her actions.
What I do not get the chance to do very often is to talk about Dad’s daily condition. When we are together we are nearly always with Mom, and when we are not with her, we are talking about what is best for her.
A couple of days ago, I met Dad and we talked about him. How he is doing, what is difficult, what he needs, etc… This is a big deal because he is of the generation where men do not express their feelings much. For him to say the emotional part of this journey is getting to him means it is a major thing. His generation doesn’t usually talk about emotions, instead, they have a stiff upper lip. When feelings do come into play, they bulldoze their way through emotional stuff like a bull in a china shop.
A few months ago, I wrote a letter from Mom’s point of view, but today I am going to write one from Dad’s. Not because he cannot speak for himself, but because his generation doesn’t express themselves well in the area of emotions. Walking next to Mom in this season is bringing every emotion to the surface. This is not unusual for caregivers, but for those unaccustomed to expression, it is a foreign and uncomfortable place to be.
Dear Friends and Family,
I am always updating you on Martha, but today I want to update you on me. As you can imagine, it is difficult for me to talk about myself. My whole world revolves around Martha. How she is feeling. How she is acting. How she is sleeping. How she is eating. Every moment, I am caring for her. Even when I have caregivers coming in to help me, it all revolves around Martha.
I have realized that I am exhausted, not just from the physical part of helping her, but also from the emotional part. Every day, I watch her slip further away. Every day, I see some more decline. She still knows me, but she doesn’t always connect with me. Sometimes she seems far away and unattached to anything. This breaks my heart a little more each day and it is a hard burden to carry.
The unknown is one of the hardest parts of this journey. I have read about this disease and its progression. I want to be ready for what is coming, however, it is overwhelming to read about the terrible things that are likely to happen. So much of what I have read scares me, for her…and for me. I don’t know if I can take it. If she forgets me, and then lashes out at me, what will I do? How long can I deal with that? Is it even going to happen to her? Will she go through every stage? I just don’t know, and not knowing is taking a toll on me.
When she exhibits a new behavior, I focus on it and analyze it to death. I wonder, is this the beginning of the next stage? Will the new behavior stay this way or get even worse? It is enough to drive me crazy. I try to live in the moment and to enjoy the good in each day, but my mind churns all the time with worry about what is coming.
Then I begin to wonder, if she gets combative, how long can I take that? I want us to be together to the end; I have planned for that, but reality crashes in on my idea of what I can and cannot handle. Then my mind goes on to what if she has to go to memory care and I have to stay where I am? It seems there is no thought in my head that doesn’t threaten to steal my peace of mind. All of them related to the future I might have in front of me.
Another very hard thing about being her caregiver is the isolation. I have surface level friends who stop and chat in the hallway or in the dining room, but they don’t really understand the hardship I am under every moment of every day. My old friends who have always been there are not around. I am hurting so badly, but it feels like I am shut in my own world with no doors or windows to the outside.
The caregivers I have pretty much around the clock are handling Martha’s physical needs. It has been nice to be able to sleep without having to get Martha up a few times a night for the bathroom or anything else. However, though I am more rested physically, the emotional part still keeps me awake much of the time. I try to leave and get out while they are with her, just to get a break for myself, but I find I don’t really have anywhere to go. Other than a few errands, I just go to the lobby and sit. I have gone out from time to time to take some photos around, but I find I am always wondering how she is doing and if things are okay with the caregiver. I feel a pressing need to get back to her because I am her connection.
To me, it feels like leaving her with others is abandoning her. She looks at me with this pout on her face, and she asks about me over and over while I am gone. She asks me where I went, when I return. I am her link to the world. When I am not there, she feels more lost.
The caregivers notice different behaviors when I am not there. I feel as if I was there, maybe that wouldn’t happen. Yet, I know that I cannot do this 24/7. I have to have breaks, but when I take one, I feel guilty or like I have just left her. I don’t want her to feel abandoned.
I also know, she doesn’t really remember, so none of this should matter to me, because in a few minutes it is all forgotten. But I cannot separate myself from the feeling I need to be with her. I won’t walk away. I also know that if I leave a lot, she might get to so she doesn’t remember me. I am not sure my heart can take that, even though I brace myself for the day it happens. She is forgetting the kids now, and I think I will be next, but at the moment she still laughs with me and acts like a small child. She has separation anxiety, but she also gets excited about little things like her stuffed animal that sings. It is so hard for me to be with her while at the same time I feel the loss of her. My heart is torn.
I know all of this is normal for caregivers, but it is not normal for me. It is all new to me. I haven’t been a caregiver before. So, when I read about the things caregivers struggle with, I relate to them all. I feel like I understand on an intellectual level, but knowing it in your head is a completely different thing than feeling it in your heart as you are going through it. The heart is harder to manage. I like to fix things…but this cannot be fixed, it must be felt. New territory for me. The day in day out feelings of loss, fear, anxiety, and guilt, mixed with love, gratefulness, and happiness that we are together is quite a mix for someone who hasn’t expressed these things externally, too often.
I am trying to find my way. Support groups, photography outings, talking to friends who have sick spouses, and running errands among other things, but none of these things lessens the feelings of isolation and uncertainty. Every journey is different I am told. Martha may not go through every single stage, or have every single behavior. So far, she has been compliant and happy most of the time, and my prayer is that she stays that way.
However, I must tell you my friends, I am struggling. I am putting one foot in front of the other, but my feet feel heavy these days. I am with My Love, but she is fading. It is a slow, excruciating, process that is killing me to watch. Slow is something I have never done well.
If you think of us, pray for us. If you want to call or visit, I would love it. I miss you. I miss being a part of you. Family is trying to come around as best as they can. I couldn’t do any of this without them. One day at a time is all we can manage at this point.
Thank you for reading Michelle’s version of what I think. I am not so good with words or asking for help, but I do want you to know what is happening. Even though everything revolves around Martha, she is not the only one affected. We are all having a tough time with this, and we are leaning on each other. You are our friends and extended family and you have been there for us for years, please don’t forget us now. We need you.