How It Is

I first inquired to my brother and sister in law last week whether or not an evening visit to see my parents was advisable, since I knew the situation is complex there. Mostly, my father has good days and bad days, largely as a reflection of how well or poorly he has slept the night before, and visiting on a bad day just makes things more complicated, with my mother, the home health care patient aid, my brother or sister in law or both, and the visitor all in the same small apartment. Also, some of my father's bad days involve him simply sleeping the entire day, and my sister in law thought I specifically wanted to interact with him, which is not really the case. I had thought of visiting more for my mother's sake than anything, since it's a challenging situation for her. Interaction with my father is limited anyway. 

One of the symptoms of the advanced Parkinson's is that my father has bladder spasms. So he has a catheter, and a catheter bag, but he's also on a muscle relaxer to reduce the severity of those spasms, another therapeutic effect of which is to make it easier for him to swallow. However, the pill has some odd side effects that include mental disorientation, nightmares and disrupted sleep. So the docs also put him on Ambien, which has a counter-active effect overnight. However, of course, Ambien has weird side effects of its own. So when these things conspire, my father does bizarre things at night, like try to get out of his hospital bed and get his foot stuck in the bed rail, or engage in loud, long, and elaborate but nonsensical conversations with imaginary guests. These overnight problems wake my brother via the baby monitor, and so everyone has a less than ideal night. 

My father is quite stubborn, and tries to stand up out of his wheelchair sometimes, without any help and without using his walker. He is now at the point where, every time he tries this, he falls. The last time resulted in a back injury, which also kept him awake at night. This incident involved my mother calling up to my sister in law, who had to come down and try to lift my father off the floor. Home health care was not present at this time. So these kinds of emergency situations arise fairly often. 

My brother and sister in law are trying valiantly to avoid residential care outside of the home for my father, because of the cost. Medicare covers the home hospice care, but not the home health care aids, and the agency gets $1200 a week for that (with the aids themselves hardly being paid anything, I bet). 

My brother himself suffers from a cervical spine/upper spine misalignment which makes it impossible for him to turn his head, and has affected his posture. His range of motion is seriously impinged. My sister in law has some health issues as well. My mother is not strong enough to do anything about my father's falls or other issues. She is experiencing fairly serious depression—"I just don't want to leave the apartment, listen to music, or do anything, really"—combined with incapacitating anxiety, but she is not getting any help for those understandable issues. The whole scene there is one of acute care, human frailty, valiant efforts, uncertainty and heavy decisions. 

It was a beautiful drive up here to Sullivan County NY last Saturday morning. Late winter in the northeast is a special season, where the forests are still bare, but tight buds have emerged, and everything is thawing. This year has been largely snow free, and everything is brown and grey. The drive from the Lehigh Valley up to my sister's goes through Pennsylvania State Forest land that is as primal eastern forest as one can find these days. My sister's place is right along the banks of the Ten Mile River, within a mile and a half walk of the Delaware, on the New York side. The first thing I always notice when I visit here is the constant singing of the river, a soothing noise of rushing water.  

There's some heartbreak connected to all of this that I won't write about at the moment. A lot of my own things have to be put in a container right now anyway, which is doable in the short term, and, frankly, a bit of a relief. 


I expected my sister to be a wreck, as I had arrived three days after the sudden death of her husband. She definitely was emotionally raw and worn, but what I was not prepared for, because my family does not discuss these things, is her own fairly serious physical disabilities. She has painful arthritis in her right hip and has difficulty walking, let alone climbing even a short set of stairs. Because of abdominal issues she has, she is not supposed to lift anything heavier than ten pounds. She is a throat cancer survivor and supposedly in remission, but her voice is frail and hoarse and it is uncomfortable for her to talk much. It turns out she had been quite dependent on her more robust husband for a lot of the physical chores involved in running their rural household. I had expected to be available for emotional support, but didn't know that I would also be highly useful for practical, simple things, like taking out the several bags of heavy trash, helping her carry groceries, helping her with her four dogs, moving heavy houseplants, etc. 

 Main Street in the small river town near my sister's house.

The view from the deck on the apartment I am staying in. 
At some point, a difficult conversation is going to be necessary about her need for physical therapy and strength training, or hiring an assistant, because I can't simply live here. I feel the usual resentment I have long felt for my family for a variety of reasons. First, to not be given any solid information at all about the situation, and second, because my family members generally take utterly shit care of themselves and end up relying on other people, in a context of being "stoic" and having weird, unconscious "values" about being independent and "not bothering anyone." My sister is quite stubborn while at the same time being legitimately needy of assistance. She also, in the best of times, has a tendency to be extremely irascible and to see even minor tasks as monumentally challenging and exasperating, so these aspects of her emotional set are definitely enhanced in her grief. 

My family members are incapable of simply grieving, especially in the presence of another person. Since I have been here, so, for five days now, the closest my sister has gotten to grieving her dead husband has been an acrid kind of resentful self pity. There is no tenderness and no sense of self compassion. She has returned to smoking and drinking alcohol as a way to "deal." A diabetic, throat cancer survivor, with abdominal surgeries, arthritis and shortness of breath, seeming to have to grieve via smoking and drinking. I have been simply present for her, no matter how she does her process. She keeps apologizing for being a mess, and I keep saying, no need to apologize, there is no right or wrong way to grieve, just be yourself. Instead of asking if she needs or wants anything, I have been grocery shopping, cooking all the meals, going over to her house (I am staying in a detached guest house apartment built out of the former barn) and doing chores, taking out trash, buying her smaller trash cans and bags that she herself can carry, inviting her on walks, etc. 

She is a difficult person, even when not grieving in her own way. For example, I simply mentioned "wow, Harvey Weinstein got 23 years in prison!" and she immediately went on a rant about how he had been treated unfairly, how he had reacted the way "all men would react" to the affection shown to him by younger women, etc. She surprises me constantly with her irascible, weird, eccentric and unpredictable views. Jung would say she has an animus, that makes her contrary and irritable, easily angered and oppositional. She has always been this way, so that one gets a sense of having to walk on eggshells, not bring anything up that even *might* be controversial, which is a difficult thing to estimate. She's a dedicated feminist who fought hard for the ERA back in the day, for example, so her take on Weinstein is typical of the weird thing where I expect we will bond over agreement on something and she just goes off, flaming out in the other direction. These unpleasant and unpredictable aspects of her personality are magnified significantly by her inability to access her grief directly, and simply be tender. 

My intuition is still quite strong that I have done exactly the right thing and continue to do so. Something organic to my own story and a calling to be present for the time being for all of this. I'm working out, meditating, walking in these glorious woods, eating well, trying to sleep better, continuing to look for jobs, and practicing compassion. 

But I also legitimately feel anger, resentment, amazed outrage, despair and my own grief. I'm also sometimes about as lonely and yearning as I have ever been in my life. Working with those aspects of the shadows of these situations is as important as staying on the light side. It is taking the full range of skills I have to simply show up for myself enough to show up for others. I do feel that some important parts of my own story are slowly coming together via this experience. I am not entirely sure what it means at this point, but there is a very strong intuitive sense that I am set to learn valuable things about my own history and my ways of having dealt with it all. 

My intention is to move gracefully and not codependently through it. 

Wish me luck.