Occam's Razor

I have officially joined the Sandwich Generation. For those of you unfamiliar with the term, this means middle-aged people like me who have children, aging parents (not to mention a full time job) and have some responsibilities to care for both. It became official when I arrived in Michigan eight days ago to help care for my mother, age 83, who was in the hospital recovering from a bad fall.

Prior to this trip I had only gone to visit them for vacation. It is true about a year ago I went to visit them alone for most of a week, both to touch base but also to assess how they were doing. That was a worrying trip because it was clear that my mother was on the margin of not being able to fend for herself. Now, while she made it back home from the hospital after a 15-day stay, she needs constant care and attention. Since I returned home, the burden is now on my Dad, who is reasonably healthy, but is still 77 years old (my Mom is 83). My mother now has to walk with a walker and needs assistance getting up and down stairs. She needs assistance for most things, including intimate things like going to the bathroom and taking a shower. In general she should not be left alone when she is up or mobile. It’s going to be tough on my father, who has never had to do this level of intense care before, and I worry that caretaker fatigue may get too much for him. As one example of his new duties, my mother must be escorted to and from the bathroom. This would not be so onerous if it was just during the day, but she also goes a couple times a night. So my Dad bought a baby monitor and rises with her 2-3 times a night to assist in that too.

My mother is a feisty woman and used to being independent so this is a difficult transition for her. If balance control were not enough she also has other conditions including Parkinsoniasm, i.e. symptoms consistent with Parkinson’s disease. Her mother died of Parkinson’s disease. In my mother these symptoms are manifested in a shakiness of her hands. She cannot type any more. She really shouldn’t be anywhere near a knife either. She can do some things for herself but these are shrinking rapidly.

Most of my week in Michigan was spent with my mother in the rehabilitation section of Mid-Michigan Medical Center in Midland. She was kept busy with morning and afternoon physical therapy sessions where she painfully and tediously relearned elementary things like ascending stairs (with a walker), sitting down, getting up safely and even opening a can of soup. Perhaps what was most remarkable was that even though my Mom struck me as fairly impaired she was in the top ten percent of the people undergoing rehabilitation therapy. She was in a good hospital, but spending so much time around people in such bad situations was awkward and difficult for me. If one were to judge the end of life from seeing the aged and infirmed in the hospital, it would be something to dread. I would prefer to die suddenly. I would not fault my daughter if she did what the Eskimos did for their parents: put me on an ice flow, and kick me adrift in the Arctic Ocean. It seems more humane than the extraordinary steps I witnessed to keep people who are barely functional alive. Some images, like the woman who spent most of her time staring ahead in a blank gaze, will haunt me for some time.

My mother gave so much of herself to us when we were young it seemed more than appropriate for me, even though I was six hundred miles away, to free my schedule and spend time helping her out. It was an awkward change of roles. I escorted her back and forth to the bathroom numerous times, wheeled her places in her wheelchair, and tended to a thousand little tasks that were beyond the time and patience of her busy nurses. It’s important for her when she sleeps to have a pillow between her legs, and to have the lights adjusted just so, and to have a blanket laid in a certain way so she can easily put it on or throw it off. In addition we spent a lot of time talking about things. She was sometimes in a fog but the conversations were generally good and meaningful. She hasn’t lost her marbles quite yet.

What I found most difficult to endure was simply watching her in bed. My mother has always been so vigorous and here she was reduced to near immobility. Even worse we knew that things would not get appreciably better. Her days doing things she enjoys, like cooking and gardening, are pretty much over. There were also hosts of medical issues to sort through. She wasn’t sleeping more than an hour or two a night, and hadn’t for months. I had to help work through medication issues, and sort through the problems by talking to lots of doctors and nurses. I became her primary patient advocate.

If all this wasn’t enough there were also major lifestyle issues that had to be addressed. Until now the roles in her marriage had been very clear-cut. She did cooking and laundry, for example. Now the tables were turned. My father had fortunately got some training from my mother in doing laundry, but I had to reinforce some basic and simplified cooking techniques since this was something my father really never had to do in 77 years! Anything beyond making a sandwich was complex for him. Since their marriage was based on roles that had been reinforced for over fifty years, they had to radically change things. In addition to caretaker fatigue in my Dad, I was very concerned that the emotional aspects of their marriage would get all out of kilter. Between my sister Mary and I we were able to get them to agree to get some joint counseling.

I have always suspected that it was difficult for my father to see life through my mother’s eyes. The same is also true in reverse. Both are really such quite different people it’s hard for us children to understand how they came together and married in the first place. I doubt they are unique in having long-term communication problems, although it is clear they both love each other very much. As the roles change in their relationship I now realize it may be possible for my father to develop true empathy for my mother. For the first time he will have to walk in a nurse’s and mother’s shoes. We children can only hope that they do so in a way that will eventually strengthen their bond of love, rather than causes more disharmony and friction. These patterns are long set and it’s hard to imagine how they could both turn more pliable at their ages.

What goes around comes around in time. It almost seems like God was saying, “I’m going to put these two together and give them numerous opportunities to work on their differences. But just in case they don’t do it, when Lee is old she will develop problems that will force a change in perspective for both of them.” In short I sometimes wonder if their relationship was stuck in concrete for fifty years because both found the patterns generally comfortable, if occasionally irritating. Now they have no choice: these fundamental problems in their relationship must be fixed. Either each gets the perspective of the other, or some sort of disaster looms. I can see my father breaking down emotionally from the strain of taking care of her. But hopefully he will find the resources and the therapy he needs to make this transition. I did my best to point him in the right direction.

In case you are wondering, we, their offspring, are beside ourselves and deeply worried about this new arrangement. While my mother is doing well under the circumstances the likelihood of another fall, from my perspective, is quite high. Her physical therapists recommend that they live in a one story house, condominium or apartment. We, their children, don’t want them hundreds of miles away. We feel the obligation to be there for them, but so far neither seems inclined to relocate and it would be impractical for us to relocate to Midland. I am hoping that after a few months of struggling through their current situation the logic of relocation will become clear. And when that decision arrives, assuming my mother hasn’t further injured herself and ended up in a nursing home (the logical next step), we are aware of the huge logistical issues involved in finding them a new home and relocating them.

We are sandwiched. But I don’t mind, for my siblings and I must also grow further too. We have to take responsibility for their care and ensure for their safety. And we all want to do this now. For the moment though we can only pause, hold our breath and hope our parents choose to make the choice to relocate and simplify their lives.

I feel like I have put on another coat of responsibility. Before I left for Michigan I could think of my parents’ problems in rather abstract terms. Now that I have been there, have seen my mother through some intense times, and dealt with the situation on the ground I feel vested in the solution. The emotional heartstrings I’ve always had for those who gave me life have proven to resilient, and their pull is still strong.

I am not a praying man, but I am inclined to pray for them now in what is likely the most difficult time of their lives.