This Means You

Los Angeles, California

Billy repaired a slow drain in my bathroom sink recently. He had to take it apart and clean the trap, and while doing this, something broke which had to be pipe-doped back together (ok, I have to disclose that there are two things in that last sentence that are completely alien to me, and that would be the trap-cleaning and the pipe-doping). Anyway, the sink was unusable for forty-eight hours due to the setting up of the pipe-dope (I'm starting to enjoy writing pipe-dope, what is wrong with me?). So, while the pipe-dope (!) was curing, there was a sheet of paper taped to the faucet on which was written, in red, DO NOT USE - THIS MEANS YOU!

I got a kick out of that sign because it was so Billy. And I was grateful that when a plumbing (or electrical or structural or . . .) problem occurs in our home, he is the go-to guy. In fact, at one point in married life, I used to cynically state that the major reason for women to marry was to have someone around to deal with the plumbing and electrical, and of course opening tight-lidded jars. But I never really meant that. And it is always good and comforting to be part of a team. Especially when problems crop up.

Unfortunately, the area of my life where I am not part of a team is in my family in the care of my aging mother. I am in this alone, and that sometimes feels like the most daunting part of a situation that is overwhelmingly difficult. As my mother's mental and physical capabilities diminish, so has my family dwindled. My father is thirteen-years gone, as are all aunts, uncles, and first cousins. There are no nieces nor nephews. I have a sister who also lives here in Los Angeles County, but early on, she opted out of any care for my mom. I can't blame her. Her husband died two years ago at a relatively young age, and from a sadly debilitating neurological disease. She went through the wringer with him. And, in the way that life doesn't play fair with time, my mother's situation dovetailed with his death. I think it was too much for her, and that she just couldn't face it. So when, a few months after we moved our mom to a senior housing facility, I asked her to come and check on Mom when I was going to be in Kona for a week, she said no. And after that, she stopped answering her phone when I called; she stopped responding to emails; and she more or less disappeared. She does visit my mom. As far as I can figure, she comes about every month or two, staying for an hour or two, or so my mom, and the facility, has reported. But, despite my attempts to reach her, she hasn't spoken to me in about eighteen months. She's unenlightened about Mom's shifting medical condition, prognosis, and care. All that heavy lifting is mine.

I don't mean to complain about this, even though I find it to be the hardest thing I've ever experienced. Loss of a family member to death or dementia is very hard. I've done that. I'm doing that. Loss of a family member because they've chosen to carve you out of their life so that they won't be called upon to help, is harder. I always thought that my sister and I were close. And I often told our friends this, when we talked about siblings and especially about the estrangement that a lot of our friends have with their siblings. But, when I would say that we were close, Billy would always add "Yeah, they're close, but you've never met two people who are more different." But I never really got that, nor realized how that would play out when we might be called upon to work together.

When my sister was overwhelmed by the care of her husband, I told her that she could call me anytime. And she did, often two or three times a day; sometimes late at night, and finally, in the middle of the night. I knew that I could not change her situation, but that the one thing I could offer was my time, my ear, and my shoulder. I decided early on to suspend whatever I might be doing when she called. It was little enough to offer, considering the ordeal she was experiencing. I felt that we grew even closer during this time, and I suppose that makes it hurt all the more that she has disconnected from me so abruptly and, evidently, so finally. I'm still shell-shocked by it, though no one who knows us both is at all surprised. I've come to learn that I'm the only one who didn't see this coming.

So, Billy, who especially loved and was loved by my dad, has stepped in to pick up the slack with my mom. He goes with us to mom's medical appointments because it takes two of us. This I realized, when, after the one time that I had to use the restroom when I was alone with my mom, she disappeared. In a panic, I finally found her, with her walker, wandering around the parking lot. This scary lesson taught me that one isn't enough. Billy also goes with me to meetings with the management in the community where she lives. He pays for her laundry, and for extras at her facility. And he manages the rental property which was her home before we moved her. He knows that I am stressed about her finite income and the unknown upcoming expense of increasing care. I manage her bills, and small investment portfolio, and compile her tax information each year. I've changed very little except rearranging her accounts to enable her to get a little more interest (laughable, these days). Early on, I determined that I would follow what she had been doing when she was well, so I still utilize her tax accountant, and her medical professionals -- all of the people she chose. Her doctor is also my doctor, so he knows us both well and has been a great help with her physical health issues, as well as her issues of depression and dementia.  He also knows the family situation. I've long since abandoned my embarrassment at crying every time I go to him for any of my own health issues. We both understand that my personal challenge, as the only caregiver for my mother, is dealing with my own sadness and stress.

It is difficult for me not to feel hurt when my mother lashes out at me. From my friends, and the members and facilitator of the support group I attend, I often hear the words: that's not your mother talking. That's the disease. But, if I acknowledge that, then I am accepting that my mother is gone. That the mom who giggled with me, in our box at the Hollywood Bowl, when the first violinist did a solo on a musical saw, is gone. That the mom who once introduced me to a friend of hers by saying This is my daughter, Mrs. Healy (later explaining that she wanted the friend to know that I was married -- and did we laugh a lot at this silliness for years afterwards) is gone. That the mom who spent a day in my kitchen each year baking batches and batches of Christmas cookies with me is gone.

In her frustration and in the anger that is currently a part of her dementia, my mother often berates me for not having children. Currently, she finds this to be the largest of my many faults and transgressions. She says that she does not want any help from me, because I did not have children. I can't convince her of this, but I know in my heart that you don't have to have children to have a sense of family. I have always had a sense of wanting to do my best with what I can offer. And I have offered what I could to my family: my time; my support; even my blood when my mother needed it. But what I never saw ahead of me, was the time when I would be the only family member left to do all the care. I suppose that if someone had warned me that my mom would need a family member to provide this care, and that that someone would be utterly on their own to provide it all, I would not have believed them when they added, and this means you.

When we were in our thirties, we often repeated the popular slogan Life is hard, and then you die. We thought it was funny. At the time, we had no compass nor sign markers to let us know what was up ahead. Life has been hard, at times. It's hard now because of the situation with my family. But we've also been lucky. We've made so many wonderful memories, and have an abundance of good friends, and we continue to enjoy life in spite of its travails. I've learned to practice what I've always known -- that sometimes you just have to suck it up and do what's required. It's not fun. It's not pretty. But we have responsibilities to those who depend upon us. I remind myself that my mom probably won't be around for much longer. And that, despite her dementia-driven abuse, I will miss her when she is gone. But for now, the lesson that I have learned from this is an important one. It is that you can't do anything about what you can't do anything about. And this means you. And, right now especially, this means me. Thank you for reading my blog. More cheerful next time, I promise.