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.


February 22, 2016

Some days I feel like a hamster on a wheel, running madly and getting nowhere.

Or more likely, a hamster clinging helplessly to the outside of the wheel, at it whirls madly out of control. I’ve had a regular parade in my head, led by the Doubt Yourself Revival. The Beat Yourself Up rhythm section has been rockin’, playing in a You’re Running Outta Time beat. Sigh. Nobody can run me through the wringer like I can. Guilt is something my brother says I shouldn’t feel, but there’s no escaping it. I don’t see the last fourteen months as ‘I gave it my best’-rather that I gave out before the finish line. I hate not to finish something I’ve started. I have what may be my final appointment with the plastic surgeon. Everything seems to be healing well. There’s still a bit of swelling, but I think the results are pretty good. It may be time to get a fitting, and find out what size I’ve become. I’ve gone well over six months without wearing a bra, and sister, I’m not so sure I ever want to wear one again. In this case, letting myself go is a good thing.

I’m going to have to call the supervisor for the caregivers this morning and cancel the visit for today. I made this appointment thinking Kevin would be off, but he is overseeing the laying of new carpets at the hotels. My appointment is for before the aide is due to come-I will have to leave around eleven am to get there in time. Kevin is going to try to get the carpet layers started and go along, but we’ll see. At the very least I will have Mom and the dogs along for the trip. It’s a busy week for appointments, Mom sees the oral surgeon on Wednesday, and I finally get to see my pain specialist on Thursday. By the end of next week, Mom should have her new teeth. Her cataract surgery isn’t until May. She continues to go back to her room and sleep whenever there’s nothing going on. Which is most of the time, we’re pretty boring people. The last few days, we’ve had a preview of premium stations on tv, so I’ve been trying to catch some movies that I haven’t seen. There’s not much appeal in that for Mom, since she can’t see. I spend a lot of time, every day, pondering the problem of finding appropriate activities for Mom-going over the pros and cons endlessly, and winding up doing nothing at all. The sheer weight of her need is sometimes suffocating. I stand in the midst of that tempest, just wishing it would stop. Mom is showing classic signs of depression-with lack of appetite, wanting to sleep all the time, and little interest in doing things. I’ve been trying to spend more time with her, especially around meals. I want so much to talk this move over with her, but she will hear none of it.

I just went out to get my second cup of coffee, and half the pot is gone. Mom has taken to pouring her coffee over the sink. It saves us from having to clean up the flood on the counters and floor, and usually I would just shrug this off. But this is our last pot of coffee until tonight, when the shopping gets done. She can’t have had more than one cup, which means the rest has gone down the sink. So, the remainder I now have in here, with me. I’ll go out and giver her periodic refills, but rationing has now gone into effect. You just don’t mess with my java supply. I’m sure I will hear the complaints about how they, the mysterious yet ubiquitous they, should know better than to run out of something so essential. In truth, they just didn’t feel like going in to the store, and we’re not going to fire them for that. As hard as it is, I’m going to have to stop dragging my feet on moving Mom. The pressure that my husband is enduring has developed a short fuse, and he needs someplace to find peace. Home should be that place.

It has always been our habit to create a space of peace and calm with our home. You need a place to escape from the everyday madness. A hidden pocket of reflective beauty in the chaos, protecting you from the storms of life. A place to restore your balance and regenerate enough to fight another day. This week we are going to have a lot of sunshine, promising the advent of spring. By the fourth day, the yard just might be dried out enough to mow. It will certainly need it by then. Four days of sunshine seem to produce four times the growth of grass, which already threatens to cover branches waiting to snap a mower blade. The presence of storm debris berates me to clean it up, even though the threat of more storms still exists. Spring, that tumultuous siren. There are buds and early blooms, and the verdant green belies the dry conditions of the summer before. Jonquils and crocus are making their appearance in the garden, and the tree that I began sculpting into a topiary piece beckons once again. It will be of great help to me to be able to get outside again, as I’m sure the doggies would agree. As much as I love what the mists and rain bring us, I look forward to seeing blue skies again. The sun may burn the gloominess from this house, shedding light on solutions instead of problems. At least, that is my hope.