June 7, 2016

I woke early hoping to have quiet time, but Mom’s already on patrol.

I bade her good morning and escaped into the writing room. Perky first thing in the morning is too much for me. Staying out there would have meant having Mom pop over every two minutes to ask what I’m doing, and incessantly checking the time on her clock. If I am able to feed the animals, I should go ahead and feed her, right? Nope-can’t do it. The pets’ food doesn’t need to be prepared for them, and I don’t do prep before a couple of cups of coffee. Today will be the first day with even more caregivers, Moms first full day of care from the agency. Mondays are a half day, I didn’t want anyone here early on Kevin’s day off, so that he can sleep in. But we did go out to lunch and shopping, which I rarely get to do. I’m going to have to discuss this new schedule with the supervisor. At around thirty-seven hours a week, that’s like a full shift. The supervisor tells me that they don’t want to give all the hours to one person, in case they call in sick. I can understand that, but split shifts still tie me down, because I have to be here to sign them in and out. I can’t plan anything that takes a whole day, that way. I think I will propose that she try having people work a full shift, just not every day. If someone is here a full day, it will give me a bit more freedom. Some of my best friends live some distance away, and half days don’t cut it for a visit.

There is also another possibility, although I hesitate to propose it. I don’t want to get anyone’s hopes up. We will see how it works out with more help, and whether or not we would be able to handle keeping her home. I think it’s only fair to consider the possibility. The question is, could we handle the constant parade of relative strangers in our home-and if so, for how long? A year? Five years? For us, the majority of stress comes from not having any time together as a couple. I’ve been staying up much later just to have some time with my Honey. There really is no place we can escape to, and we can’t go somewhere else, leaving her here alone. Yesterday, just going out to lunch together was novel, and we spent it basically catching up with each other. Even though we spend every evening together, we can rarely talk. And no, a closed bedroom door is no impediment when she comes looking. Mom has to know what every conversation is about. I spend so much time, on a daily basis, pondering the Mom puzzle-that there’s little time to think of anything else. And that won’t stop when she leaves here, it simply means that I will be spending a lot of time driving to see her. I figure that the first few weeks, I will need to be there to reassure her every day. I think, or maybe hope that once she settles in, she won’t need to rely on me as much.

I’ve been talking a lot about how this has affected my husband and myself. On one hand, I don’t thing it’s talked about enough. We keep these thoughts to ourselves, thinking it selfish to express them. On the other, caring for someone you love should be a selfless act, philosophically. I think I’ve been obsessing over the issue lately because my motives in this have been questioned. I made this commitment with my eyes open, and caring for my mother will not end if she stops living here. My sister has expressed an interest in moving her to a place in Oregon, where she can be closer to Mom-and I have no objection to that, really. We all feel the time running out ever faster that we have to spend with Mom. It’s getting harder for my sister to travel here. I only hope that she’s not still thinking that she has to rescue Mom from my evil clutches… I still don’t really know what she’s been going through, but communicating with her is like walking through a minefield with the wrong map. She’s so fragile, both physically and emotionally, the fault of whatever has been wasting her body away for too many years now. Normally at this point I would feel I have to balance this narrative with all of the positives I see for Mom in this. Not this time. I think there is a real need to discuss the huge impact that caring for a loved one with dementia has on those who care for them.

I feel no guilt in my treatment of Mom the last eighteen months, nor do I regret making the decision to move her to long term care. Sure, there have been times, maybe even many times, when I wish I had held my temper or my tongue. All I can do is learn from my mistakes, try to make amends, forgive myself-and carry on. My goal for my mother is the same as it has always been-for her to live the rest of her life happy and secure. I believe unequivocally that this move will benefit her in many ways, providing her with activities and stimulation that I cannot. It does not mean that my commitment to her ends when she leaves here, only that here will be a place I can escape to.

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