05 Dec About My Mother
This post/ rough draft of the beginnings of book is focused on my efforts to deal with my mother’s decline and ultimate passing- largely in real time. In her last year/s I did a lot of documenting and writing, and I shared that work with some immediacy. For me, doing this work helped me to process, and be with, some of the powerful emotions related to a decidely tumultuous health situation. As I shared this work I got a great deal of supportive feedback. Most of this keyed in on ways in which the photos and writing, and the public nature of that processing, helped others to articulate some of their own feelings around their own struggles to deal with the decline of elderly loved ones. This feedback gave me a nudge to continue to be present, and public, with some of what we were dealing with. As I did this it became increasingly clear that shame around aging and infirmity, as well as the emotional impact on the individual who was suffering these difficult realities, puts a profound pressure no people to keep their own suffering quiet. The more that I wrote, the more impactful stories I heard from others. Yet, it remained difficult to find the right amount of “openness” as I felt a responsibility to protect my mother’s privacy/feelings even as there was a growing sense that it was important for others that I share.
A few weeks before the anniversary of her death, which was on Sept 9, 2019, I started to work on this project; compiling many of the posts I wrote about into a longer piece. I had hoped to do some processing of my own grief and mark the anniversary by pulling this work into some kind of coherent format. However, that process was more intense than I thought and it began to feel like a weight rather than a release. Eventually I felt so compelled to get it done that I instead decided to put it aside, because the pressure to get it done was too much, and it didn’t feel healthy to push myself in that way.
We went to beach that weekend and I spent a lot of time thinking about my mom. It was good to make that space, but grief doesn’t stick to a time table, so it wasn’t like the fog of grief magically lifted after the annivseray. However, a couple of weeks after the anniversary I began to feel a bit more settled. Frankly, the pandemic has complicated things. With everything feeling a bit unstable it’s hard to get a sense of things “returning to normal”.
The anniversary of her passing was two months ago, and a couple of days ago I finally re-opened this draft and started to gently edit. The following day I had to go pick up some print-outs from her bank to help finalize her estate. As I walked out of the branch I was struck with a profound memory of driving my mother to that location about 4 years ago after she had been pulled into a phone scam. She had gotten a call from her “nephew” asking for help after a drunk driving accident that broke his nose. He didn’t want her to call his parents but needed $4000 to pay a lawyer and for bail. In short it was a scam that people run on older people. I posted a picture of the bank with the caption above and I got numerous comments confirming that this had happened to others. Once again shame keeps us from sharing these important stories. It’s secrecy and shame that make it possible for others to exploit our family and friends.
As I worked through my writing and photos I felt a bit mired in a sense that the work was very heavy, and didn’t do justice to the full sense of my mother’s energy. As I continue to work through things, I hope to create a more filled out sense of who she was in this prologue. It’s now early December, and my mother would have been 86 This December 12th. So, I have set a new goal of putting up something to honor that date.
About 6 years before my mother passed away, my family moved into the house I grew up in. She had been living there alone, in this 3 bedroom home, for nearly a decade after my father died. It is an older house that wasn’t well maintained to begin with and the struggle of dealing with it had finally pushed her to move into a retirement community in town. She was also aware that she was going to need more help in the near future and she didn’t want to have anyone else be responsible for her. She had a morbid fear of getting dementia, and she made it awkwardly clear that she wanted as few medical interventions as possible. In fact, as I cleaned out her living space after she passed away, I found more than a dozen copies of her health care directives which demanded no interventions except for comfort.
We had a pretty great situation in Brooklyn, but it also felt like the kids could benefit from getting out of the city for a while. Our older daughter was developing some powerful anxiety around things like traveling on the subway, and sometimes the energy of the city was just too much to deal with. At the same time I also knew that my mother needed a bit more support, even as she resisted that support. Frankly, while we had found ways of becoming closer after my father died, I knew that we still had some work to do in terms of finding peace within our own relationship. My mother could be incredibly stubborn and resisted any kind of help that impeded her sense of freedom or agency. In other words, she didn’t mind getting help, but it had to be on her terms and it couldn’t feel like she was asking anything of anyone; it was complicated. A few years earlier she had some issues with her thyroid that caused her to lose her balance and fall. First she got a huge gash under her eye at a museum in NY. A couple of months later she fell and hit her head. That’s when they discovered a problem with the thyroid that they took some steps to correct with a minor surgery and some drugs. After that surgery I asked her if her doctor had given her the ok to drive, and she insisted she had been cleared. I called the doctor to follow up on how things had gone and he said that she was not given an ok to drive. When I told her that I had called him because she had seemed confused about it, we got into a 3 hour knock down drag out fight on the phone. We started talking at 10 and I didn’t get to bed until 2 AM. She could not accept that I had called the doctor even though her memory and cognitive abilities were compromised by her fall and the thyroid issue. I found it almost impossible to help her because I was only allowed to do so on her terms even though her terms were not that tenable.
Again, while my mother and I had become closer after my father’s death, we still had some work to do in terms of finding ease within our relationship. When I was in college my mom and I got into a small conflict about cleaning up my old bedroom when I came to visit over some holiday. I was doing what she asked, but apparently not as quickly as she liked and we got into a small conflict that never really resolved itself. It wasn’t a major fight by any means, but for the rest of my visit she held something of a grudge, slamming doors occasionally and steering clear of me as well. That tension carried over for many years. As far back as junior high I had been a bit closer to, and more connected with, my father. My mom was often busy with her own work so my father tended to help us more with our school papers. He also liked to watch movies with us but my mother could rarely pay attention to them. So, this conflict over the clearing out of my room had less impact that it may have seemed at the time, but it clarified something for me; it left me feeling a bit more guarded, and it was hard for me to feel at ease in our interactions because I wasn’t sure when I would upset her. This is something that I hoped to address as she transitioned to needing more help than she wanted to accept. While my father and I were closer we still had a good deal of conflict. However, throughout my 30’s we both remained fairly committed to trying to work through it. Meanwhile my mom and I remained in a kind of tense peace, largely by keeping our interactions a bit more distant and limited.
When my dad was hit by a car and killed, my mom was gutted. There was an earthquake like shift in our various roles and responsibilities within the family. When I arrived home the next morning I walked into the house to find my mom surrounded by several friends who had thankfully stayed with her through the night. I hugged her and we both dissolved into a fit of overwhelming grief. I don’t think I had been able to cry yet; I had remained in shock since I received her call in NY the previous night. She was a crier and I was not, so that moment was quite powerful for me; her grief washed over me, and helped me to express my own. Over the next week I stepped into the role of dealing with things in a way that my father had; taking on the difficult responsibilities that he might have handled had he been there. When that was over, and the people had cleared out, she collapsed on a bed wailing that no one would ever love her again. She was inconsolable, and the experience was traumatizing for me because the grief was so deep, present, and profound that I felt absolutely helpless. I had a powerful need to help her, to save her, or lift her up in some way, but she was so lost in that darkness I could find no way to be a light. I had the love to give, but she had no way to take it.
Over the next few years, when I still lived in Brooklyn, she had a series of falls; breaking an arm here, ripping open her forehead there, etc. It was hard to deal with these situations from a distance, but at least my sister and her husband were there to help. Again, even as she struggled with the effects of whacks to the head she wouldn’t let me do simple things, like talk to her doctor. According to her, I had no right to know that or talk to her doctor about it. The thing that she insisted that I accept was that I had no right to know anything about her health situation, made our relationship difficult to maintain. She demanded her autonomy with ever more power, even as it began to slip away.
My mother was always very supportive of our interests when we were children. She would get us lessons for anything we seemed vaguely drawn towards. She signed us up for sports leagues, tennis lessons, music lessons, typing lessons, and made us read several books a week during the summer. She wasn’t exactly a tiger mom, but she was an enthusiastic encourager.
She was also anxious and stressed out much of the time. I recall her coming home from work at 5 pm (I can still hear the sound of her tires crunching on the gravel because we listened carefully so that we could make sure the TV was off when she came through the door). She would almost immediately light a cigarette and take a long drag. Then she would either have a whiskey sour or go take a nap before dinner. Then she would work on grading papers, or reading a study, or marking up a proposal. She worked late into the night. This hard work led her to become the first tenured female professor in the School of Social Work, but it also made her just a little less available for her children. As I write this I picture myself following a similar path at times; working too much to be as present with my kids as I’d like.
Recently, a few days after UNC shut down on campus classes due to Covid infections, I took a bike ride around town photographing buildings. I came across her old office and I wrote down the following;
My mother’s stubbornness was legendary. She could also be extremely generous, and the two often co-mingled. Sometimes, often even, she would fight for something that she wanted, only to give it to someone else in the end. For example, she could be brutal about fairly dividing a meal and then would relentlessly put some of her share on other people’s plates. She got pleasure from sharing so, in order to have something to share, she’d create extra conflict.
My father was very cheap, so her stubbornness was sometimes related to my father’s resistance to spending, and they would end up fighting. She and my father fought a lot, too much, and my father rarely came out on top. Later in life when I told her how difficult it was to live with all that fighting, she argued that it was good for all us because that way they “got it out”. She had a hard time accepting that there were other ways of addressing the issues within their relationship; and that fighting tenaciously in front of their children was not necessarily the best one.
She was a sizzling ball of energy that was often difficult to contain. My mother used some of that energy to support and encourage me creatively when I was young. I have strong memories of her taking us to the Library frequently when we were kids and encouraging whatever interests we might have. She signed us up for classes and sports that we didn’t always want to do, but she pushed us pretty relentlessly to develop skills and interests. My mother was unconditionally encouraging in a way that clashed with my fathers outsized expectations and helped create a complex sense of self-worth. His expectation undermined the sense of belief that she tried to instill. This wasn’t something that I always understood, or appreciated it in the moment but understand now how valuable that effort was. As a parent I haven’t been nearly as successful and providing that level of support to my own children. Still, she was not always as present emotionally as I might’ve liked when I was a child. I remember being glad when I was sick because it was on these occasions that I would be able to get her full attention, at least for a little while.
In some sense her encouragement pushed me in the direction of making art. Sometimes we don’t see our parent’s true wisdom. It took some time to earn my father’s respect, and then he was gone too soon. 7 years after his death, when I moved back home, my mom was a bit more ready to work with me on deepening our relationship. We only saw each other a couple of times a month. She wanted her space and we were busy with work and our kids. After a couple of years I began to deal with a number of small crises with my mom. It was probably in our second year in North Carolina that my mom called me in a panic. This was when she got the scam call about her grandson being in a car accident. While I was able to help her stop that incident, it happened a few more times. They would get her in a panic and she would respond emotionally. The first couple of times, once I had calmed her down, I was able to get her to remember that it had happened before. The last time it happened she believed that it had happened before but she couldn’t remember it, and that terrified her more than anything else.
My mom also had a series of small medical issues that I had to help with. One day she got smashed by a door at the dentist and broke her nose. I had to go up and wheel her from the dental school to the hospital to save having to pay for an ambulance. On another occasion she had to have a surgery on her nose. She had me drive her there but insisted that she would be able to go home alone. I told her I thought that she should stay with us because she had a strong reaction to anesthesia. She berated me for trying to control her and she was sure she would be find right after the surgery. She didn’t come out of the anesthesia for about 12 hours. It was supposed to last 30 minutes. She had to stay the night in the hospital and finally relented to staying with us the next night because she could barely walk. Yet, she continued to closely guard her autonomy and privacy. It was only when she had more severe health issues a few years later that I realized how much memory loss she had been covering up. In fact, when she passed away and I was able to start cleaning up the mess in her house it became very clear. I would find dozens of copies of the same document in various layers of piles. I found several copies of the same tax forms that she had clearly lost in the piles, year after year, and had the accountant re-send. She talked a lot about her fear of losing her memory, and complained about it, but still kept so much from us. In the Summer of 2018 things began to get worse.
Part 2. The fall was difficult
In the fall of 2018 my mother began to struggle in a new way. Throughout my life she was anxious and had a strong need to be both autonomous and in control. That fall though, her anxiety became overwhelming and she began to lose control, which led to a greater spiral of anxiety. I could see that her anxiety was affecting her memory, which was ramping up her anxiety, which in turn increased her memory issues. It was like an anxiety tornado. At the time I began to do some writing about my experience. As her health issues increased I continued to write and use photographs to share my experience. This work really resonated with people and I got a lot of supportive feedback from people who had struggled to articulate their own complex experiences with aging parents. I’ve decided to compile some of that work here. and plan to make some of these word and images into a book. I will give some context and I will include lightly edited work that I previously published on Instagram or on this blog
The struggles began in Sept/October.
We had a snow storm a few days before her birthday and while school was still closed on the 12th, the roads were pretty clear, so my wife and kids and I drove over to her place to have lunch. We had a really wonderful time; she was in good spirits and cracking a lot of jokes with the kids. That night she had plans to go to dinner with a friend. At around 10 that evening I got a message from a friend of mine, asking what kind of car my mom drives. It turns out that they had seen her wander past a bar they were in and ran after her. It turned out she was lost and could not find her car. They had been driving around for some time looking for her car with her. Apparently she didn’t want to bother me, but eventually they told me to meet them, because they were getting stressed out. I picked her up and we drove around for about an hour until we finally found it in a parking lot near the restaurant. I had wanted to look there first but she remembered that it was on the street and insisted I keep driving forward. She was deeply distressed and embarrassed by the situation so it was hard to communicate. When we found the car I had to let her drive home and was only allowed to follow her half way. She made it home.
When I talked to her the next afternoon she was kind of frantic because she had to run off to get her car inspected. she was able to tell me old me she had barely slept but the previous night. I had offered to take care of her inspection, but my mother insisted on doing it herself. That night at around 9 I got a call letting me know that she was on the way to the emergency room due to shoulder pain.
When I got there I found her moaning on a bench in the lobby. I was told they were waiting for a room to open which is why she was laying there with no support. She was despondent, and in such pain that she couldn’t move. Given my understanding of the power of the mind to cause pain due to stress I was pretty sure that all of the difficulty of the previous few days was at the root of her problem. She had not had a fall, so I wanted to make sure she was checked out as swiftly as possible. I wanted to get her out of this emergency situation where I knew the pressure of the situation would not help. It is not easy to see someone you love in such pain and discomfort. She repeatedly told me that she couldn’t take it any more. While she was pretty out of it, this talk concerned me. It was my understanding that at her age and relative health, her desire to be here on Earth played a pretty significant role in whether or not she stayed here, and I hoped that she would see value in staying. I tried to comfort her by putting a hand on her, but she was so tense that it only made things worse. So I just sat with her in the brightly lit room reminding her to breathe deeply.
Once we got her in the examination room she was still in great distress. The anxiety piece of the puzzle was further confirmed because she was obsessing about a series of responsibilities and stressors, and conflating them as well. “You have to call the School of dentistry…Now! and cancel my appointment for tomorrow.. the lymphodema doctor said I have to get the tail lights replaced, it’s so expensive. I think the appointment is for 10am so you have to call them now.” It was 10pm at that point and there was no room for pointing out the fact that an ER visit was a valid reason for missing an appointment. I faked a call to the dentist to assuage her (when I reached them the next day I found she didn’t have an appointment until Feb). This calmed her slightly, but she asked about it again a few moments later. Her breathing was shallow and labored and her blood pressure and pulse were quite high. While we didn’t have to wait too long for care, even a half an hour at that level of distress can be difficult to bear, so I did my best to focus on my own breathing as well. The next day I found out that all of the tail lights on her car had to be replaced, which was $1500. I believe she had only so much capacity to handle stressors, and when the cup got to full, she just couldn’t handle it, and struggled to accept help as well.
The ER nurse scheduled a shoulder X-Ray which thankfully ruled out a tumor or fracture. My mom was buoyed by this assessment but still in pain and distress. They gave her a Tylenol and thoroughly examined her shoulder. As far as they could tell, the pain was muscular as it emanated from a very tight band above her shoulder blade. I pulled the doctor aside and explained the context of the stress she had been dealing with and suggested that this was a driver of the pain. My sister, who previously worked as a physicians assistant, added that she believed that it might be cancer, or necrotic tissue left over from radiation that she had received for breast cancer 35 years earlier. A couple of weeks earlier I had been told by the social worker at her retirement community that there was no evidence of cancer, and frankly, even if there were, I didn’t think that the emergency room was the place to deal with it. I wanted to get her home so that she could rest in a calm environment and then go to the health center in a more relaxed state to deal with what was going on.
The hospital released her and I got her home around 1 AM. I decided to stay the night at her place to keep an eye on her. I laid some blankets on her living room floor because her couch was piled up with newspaper and books. When we were there a day earlier I had tried to get her to see that the clutter that was beginning to pile up was like a weight on her and urged her to let me help her get rid of some of it. She told me she was on top of it, but she had been slowing down and not able to keep up like she used to. In retrospect I can see that depression was also getting the better of her. She’s pretty good at putting on a positive public face but can clearly be stalked by the black dog when she is alone. That night we got into a slight conflict because she was still confused from the sickness and the pain, but she refused to go to bed. 2 hours earlier she had been in an absolutely desperate state. To see her puttering about when she clearly needed sleep was frustrating. I got a bit annoyed because she snapped at me a few times for suggesting that she try to get some sleep. She continued to putter and I finally I went to bed myself despite my concern. At the same time, I was vaguely relieved because she was so markedly improved from her time in the ER only hours earlier. This made me feel a lot better about getting her out of there.
The next morning I woke up and sat in her quiet space. I walked around and made a few pictures because I had a sense that things were going to get interesting fast. I wanted to remember things. When she still hadn’t risen at noon my sister suggested that I check to make sure she was still breathing. As I walked in the room I noticed that her clock read 12:12, the numbers of her birthday. I didn’t wake her because I wanted her to sleep, but it was clear she was sleeping comfortably. When I got home I called and reached her. She clearly felt much better than she had the day before and we talked for a little while. I convinced her that she had to let me take on some responsibilities for her because she clearly couldn’t handle everything herself.
When I came back the following day she was improved, but her shoulder still hurt and she was short of breath. I sat down with her and helped her to get her end of the year donations together. Her hand didn’t work so well, which meant she has trouble writing, so I helped to organize her requests and write the checks. As we worked, she seemed to find some relief from the overwhelming stress and it also seemed as if her breathing improved as her anxiety went down as well. At the time I noticed that she had tons of duplicates of the requests for donation. For example, she had at least a dozen requests from Unicef and Greenpeace. I remember feeling kind of enraged that all of these organizations clearly preyed on the elderly who had trouble keeping up with how often they donated.
I talked with a social worker at her retirement community who asked me to watch her car. When she went for her check up after the ER visit the doctor took away her driving privileges until she passed a driving test. It later turned out that her license was a couple of years out of date. She was livid that we were holding onto her car, but she wasn’t allowed to have it. Still she blamed me.
We had a couple of nice meals with my mom before Christmas and then went to Dallas to see my wife’s parents for a few days. We were back well before New Year’s and my brother came down to visit. We all went to a nice meal with my mom. She still seemed a little down and out of the weather, but was in good spirits for his visit. I think the above picture was taken on the second or the third.
One reason we had a short visit in Dallas was that we knew we needed to be back for the 30th because it was would have been my parent’s 60th wedding anniversary. My mother’s birthday was hard on her and I knew that their anniversary would be as well. She was definitely depressed and missing her husband when I went to visit. Still, she was also her somewhat feisty self.
Part 3. Things get real.
The next set of words and images are largely going to be from Facebook posts that I shared as I worked to ground myself in some difficult situations. The earlier posts were more private (i.e. largely just images). In addition, I wrote some longer posts about the experiences that I will draw from.
Jan 5, 2019.
I woke up from a nap to a phone call from my sister. She had gotten a call that my mother was on the way to the hospital with severe breathing issues. I was told they were headed to the hospital about 20 minutes from my house, in Hillsborough. My sister was not feeling well so I rushed to get there. When I arrived I found that she had been brought to the other hospital which is only 2 minutes from my home. As I rushed to my car she called me. She was in a total panic and not actually holding the phone to her ear. I could hear her screaming for help but she couldn’t hear me. I could also hear some people trying to calm her. After about 10 minutes of that on speaker phone I double lined my brother because I could not bear the weight of it alone. There was so much suffering and there was nothing I could do. I parked near the hospital and ran up to the Emergency Room. I found her squatting on a bed and immediately saw that her heart rate was around 165 and her oxygen was very low. She was very anxious, but by simply putting a hand on her and talking calming I was able to watch her heart rate slowly fall. I got her to the bathroom a couple of times in a wheel chair. The first time she was modest and wanted me outside so I had to get a nurse. By the next night I was regularly wiping her bottom (the antibiotic gave her powerful bowel movements) and she thought I was her husband.
An X-ray revealed that she had severe pneumonia, and they started making plans to move her to the other hospital I had first driven to because they have a special floor for more elderly patients. It was a relief to know what was going on, but she was still very unwell and the situation was worrisome. I was not confident that she would pull through the situation. I was holding her hand as she rested when I got a text from my cousin letting me know that she had just talked to my daughter Holly, who was 25 years old. She asked if I remembered that I was a sperm donor. I did. I was both elated and overwhelmed. I felt a responsibility to talk with her but there was too much going on so I texted to let her know I was glad to hear from her. I talked to her the next day. This made the next few days that much more emotionally interesting. To make a long story short, I ended up meeting her a month later and we have become quite close.
After about 2 hours of waiting a transfer team showed up. I wasn’t going to be allowed to go in the ambulance with her so I started to head to my car. It quickly became clear though, that my mother was not willing to move at the moment. When she didn’t feel well she could be belligerent and insistent about things that she wanted or did not want. She did not want to go. It took a lot of coaxing but she finally agreed to be moved to the rolling bed. We both headed out.
When I got there they asked me to sit in the waiting area till she was settled. After about 15 minutes I had a short talk with a doctor who told me they were moving her into the room and taking vitals. Over an hour later I got a little pushy and asked to be let in. She was agitated as hell, but once again, just getting a familiar hand on her helped her to quickly calm down.
I probably should not admit it, but I have not been to the doctor in 6 years. I’m healthy, exercise, eat right, cut my drinking to an occasional beer or two, and I do a lot of work to understand what’s going on with me emotionally. I’m admitting it because I have just been in the hospital ICU for 3 days with my mother who has pneumonia, which undoubtedly has a lot to do with various profound emotional stressors related to aging, a birthday, memory decline, a 60th anniversary with a husband who died nearly 13 years ago this month. While the caregivers have been great – and the hospital is new, quiet, and spacious – it is clear that hospitals are not places of healing.
To start with, the monitors they use to measure heart rate and oxygen levels seem to exacerbate the anxiety that cause heart rates to raise and oxygen levels to fall. The lines and leads attached to the body are like handcuffs which increase the anxiety that is partly responsible for the problems. When my mom first got the emergency room, she was in a panic – which is why her heart was going crazy. I got there and was able to put a hand on her and help her calm down, and her heart rate slowed dramatically while her oxygen level rose. My sister and I kept her company and tried to keep her calm. In that chaotic place family was so important since she was in such distress. Later that night, at around midnight, they moved her to a smaller hospital, and they wouldn’t let me in to see her until nearly 2am because she was so unsettled. Finally, I forced my way in, and had her asleep within 10 minutes simply by making her feel safer – and I kept a hand on her most of the night.
A few times, I have been able to help her calm down through meditations and focusing on gratitude. However, this is a very hard situation for her. She is a woman who has been fiercely independent and in need of control over her situation. This has caused problems between us in the past, but we have been working very hard to find a balance where she can come to see that I am not trying to control her, but instead to help her remain independent as long as possible.
Again, I have experienced great compassion from many of the caregivers. Some of them have challenged me to exercise my patience and compassion for their situation, and I am learning to listen better to what they need as well. This is an intensely difficult situation, but it is also quite healing to be able to provide compassion and support, and to have it accepted and embraced. Still. Nighttime brings confusion and anger. My mother is hooked up to many wires but wants to move around. Not only is she at risk for falls, the oxygen machine is in the wall and she cannot move more than a few feet from the bed. When she forgets where she is or what the wires are she can be very insistent about ripping them off. Processing my own reaction to her rage and scorn has been moving and useful. I have so much empathy for her present situation that it’s easy to just say I’m sorry, and that helps her to calm down. Sometimes we just need to have our anger acknowledged to help let it go.
In “All The Rage” (our film about mind body medicine), I talk a little bit about just how hard it has been to overcome some of the difficulties in my relationship with my mother. The film was completed 2 years ago, and we have made tremendous progress since then, which has made this situation both bearable and moving, even in the horror of it all. It is deeply painful to see one’s parent in distress. Having said that, I also want to add that even as she sometimes despairs, she has exhibited such profound bravery and stoicism that I am continually amazed. She is 84 and has pneumonia, which is not easy. Her veins are weak so the IV keeps failing. That is hard to watch. Thankfully, she has many great friends who are giving me a respite at times. I just went for a run and will take a nap before enjoying another night of sundowning confusion. (update- not sundowning tonight- a miraculous day of recovery- and she’s off the heavy flow oxygen!)
I know she will get through this, though she has her doubts at the moment. She is strong as an ox. However, she does struggle with anxiety at times – and in her weakened state, the anxiety has come out in even more powerful and creative ways. I have had to cancel the same dentist appointment many times. In other words all of the things she tries to hold on to- that she needs to get done- come roaring back. For me, the thing I often hold in is sadness rather than fear, and it is coming out. I have broken into tears on numerous occasions when I’m not expecting it. Rather than hold it back, I just let it go. I have the strength to fight it back, but have learned to let it go. What I can see is that those things that we have the strength to hold in or repress when we are strong, come roaring forth like demons when we don’t have the resources to hold them back. A few weeks ago I wrote about all the things my mom holds onto physically, and how managing them has become overwhelming. I have a sense that this process of overcoming severe illness has given her a renewed sense of peace and acceptance. I believe she is going to have a lot more ease in letting go as she moves forward. I said to her friend that this whole week has been a horrible mitzvah. As awful as it has been, it has also been deeply enlightening and uplifting. I have enormous amounts of gratitude right now.
I was exhausted by my 5 nights at the hospital, so I spent a lot less time at the rehab center. Her strength came back steadily. I think she had to stay there for about a week but she was very determined to get back home and she did quite quickly. Over the next couple weeks I checked in with her every couple days but she was starting to get back to things like her book group. I urged her to let me help her get rid of some of the piles of old newspapers because the task of going through the various piles was overwhelming her. Her inward state was clearly connected to the outward state of her home. It was tightly disorganized in a way that belied the severity of the problem. However, her attempts to hide the problem were falling apart in both spheres. As a person who wants to help, this was difficult for me to deal with, because she made it difficult, if not impossible, for me to help her. So, I had to accept things as they were, or get pushed away even further. That acceptance was difficult because it made me feel somewhat helpless.
A couple of days before my 50th birthday I flew to NY because my brother had rented out a boat and we each invited friends. I came a day before the rest of my family because I had made plans to meet my daughter Holly, who had contacted me earlier in the month. Since then we had talked a few times and we got along well. I was nervous but excited as I waited for her to emerge from the train at Penn Station. I had been making a film about donor conception for nearly a decade so I was torn. I certainly wanted to capture our meeting but was committed to being present so I planned to shoot them put away my phone. Somehow I missed her but she texted me to let me know where she was. I did capture that moment, and then we went to have a meal. It was profound for both of us. She couldn’t come to the birthday party. I understood that the whole situation could be overwhelming. A bunch of friends came up from North Carolina and we rented a van to bring back a lot of things from our house in Brooklyn. We were preparing to sell it, so everything was quite stressful, but also exciting.
The next couple of months were vaguely stable. It was clear that anxiety was increasingly an issue that needed to be dealt with, but most of my efforts to get her to take action were rebuffed. She had been seeing a mindfulness coach but for some reason hadn’t done so in a while. She agreed to try to start that up again but it was difficult to schedule. I urged her to try to practice some kind of mediation on her own but she was resistant. She took her drivers test and failed it, but was determined to re-take it as soon as possible. In short, she was living alone, and functioning to some degree, but struggling. One of her friends from her book club reached out to me with some concern because she was not able to keep up with the books or the discussion and they were worried about her.
After some effort she agreed to go see a therapist. I drove her to her first meeting and she said something so intentionally sharp and dismissive to me on the way there (I can’t remember what it was), that I recall feeling absolutely livid. My mother knew how to push buttons. Still, I was glad she was going. She arranged for a friend to take her for her next few meetings. However, after about a month the therapist refused to see her because she had had a series of small seizures in her office.
Since I had the strong belief that many of the issues she faced with her memory stemmed from her anxiety I arranged a meeting with her social worker and her doctor, whom agreed that it was a problem, in order to see if we could come up with some solutions. We met in the medical building of her retirement community on a Tuesday morning in early May. As soon as she walked in my mom made it clear that she had no real interest in being there. The doctor started the meeting by telling her that the reason she called the meeting was that therapist had explained that on several occasions, when my mother was pushed to deal with a difficult emotion, here eyes would go blank and then her head would slump forward. These mini seizures didn’t last long, but they were not something the therapist felt comfortable with handling. My mother stated that she didn’t believe they had happened. Each time I tried to talk she would waive her hand to dismiss me. I suggested trying some medication to help ease the anxiety, but that wasn’t something she was interested in. Finally, I stated very clearly, and somewhat emotionally, that I loved her a great deal and that I had not interest in exerting control over her. Instead, I explained, I wanted to help her to maintain her autonomy. However, the seizures, as a response to difficult emotions, were worrying to me. She kind of cut me off, dismissively thanking me for my concern, but once again asserting that she didn’t see it as a problem. She fell back on her common refrain that I’d have to accept that she was going to see it her way and that I could see it mine. Leaving the meeting was a little bit awkward. We had all named the elephant in the room and my mother had told us she didn’t see an elephant.
Sometimes, when I see something important, I can be quite forceful in asking others to see it as well. Over time I have learned a lot about letting go of that impulse. In this case I knew I had to let it go, but it wasn’t easy because I could see that it was causing my mother so much suffering, and I believed there were ways of addressing it. I also had a sense of dread that things would only get worse; and they did.
Over the previous couple of years I had written a couple of posts about my mother’s accidents and interactions with the world of health care, mostly from the perspective of working to stay grounded myself so that I could be most present for her. As my mother’s health care worries piled up I thought about the situation more continuously and started to write about it even more. Still, I didn’t share my thoughts so openly on social media. I felt resistant to it because I worried it could appear narcissistic or “sharing too much”. Still, as I posted longer blog pieces I got a lot of very strongly supportive and appreciative feedback. Again, as my mother’s troubles mounted I shared more pictures that documented my experience of the situation, and slowly I started to add more words to those posts. This work began to really strike a chord, so I expanded it, and found that people needed it. I heard from so many people that they had kept their struggles quiet because it had seemed inappropriate to share, but that my posts were helping them to process their own emotions around their past experiences as well as things they were dealing with in the moment. This feedback prompted me to share more openly. This section will include some of that work as well as expansions on it as I didn’t feel as comfortable fully sharing in the early phases of the summer of 2019.
On the Friday after my Tuesday meeting with mom I got a call from my sister. She had been on the way to visit our mother when she got a call from the a nurse alerting her that our mom had fallen, but that she was ok. She was going to stay in the health care center overnight for observation, and she didn’t want us to visit. Given our mom’s demand for autonomy this didn’t seem too strange. I was thankful that she had agreed to stay under observation, and had learned not to push in when she told us to stay away. That night I got a call from her around 11pm. She wanted to know the number of her cottage because she was having trouble finding it. I told her that I thought she was supposed to be in the health care facility, and she explained that she wanted to go home and get some things that she needed. However, she was clearly out of it and I demanded that she go back to the health care center and that I would come and get whatever she needed. She reluctantly agreed, but I was worried she might not make it back if she couldn’t find her own place. I was a bit worried as hustled to the car and I called the facility to try and alert them but had trouble getting through.
When I pulled up she was standing in the driveway and clearly agitated, but relieved to see me. I got her to go back upstairs with me, and the nurse was very glad to see me. She looked concerned, because my mother had slipped out through a locked stairway door when someone had come in. I knew that she had taken a bump to the head and it was covered with a big bandage. She was mobile, but agitated. The nurse explained that all her things were in the room and showed them to her, suggesting that she get in her bathrobe. Once we got her settled down the nurse told me that she was concerned that they had not done a cat scan on her brain. She had called the doctor to advocate for one but the doctor said it could wait. I was nervous about the situation, but my mother had refused to go to the hospital earlier, and I wasn’t sure it made sense to do so at midnight if she needed rest. I thanked the nurse profusely and gave her my number.
When I called in the morning I was told that she had been given her meds and seemed to be tired but doing ok. I went to a yoga class and asked my wife to check in on her as I had a few errands to do. My wife got there right around the same time as my sister and my Mom was clearly not well. They decided to put her in a car and have my wife Suki take her to the ER. I dropped what I was doing and rushed over. The next few hours were a roller coaster of emotions.
On my way there I got some more details from my sister. While they had given her medicine in the morning she hadn’t eaten, and she hadn’t gone to the bathroom since the previous evening. My sister, who worked as a physicians assistant, was very concerned. When I got there my mother was uncomfortable and somewhat out of it. She hated the neck collar but the ER insisted on it due to the nature of her fall. It turned out that she had had a seizure near the dining hall and fell backwards, smacking her head on the ground. Even with the big bandage that was on it there was a good deal of blood still leaking from the wound. There was a sense of urgency in the ER, and shortly after I got there they wheeled her out for a CT Scan. I had been in my share of Emergency Rooms over the past few years, but this was different. This time there was a sense that things were worse than they had been in other situations. Shortly after they wheeled her back in a nurse came and checked for the results. As he scrolled through a visualization of different layers of depth in the brain I could see what looked like an oil plume in the water from an exploding well. The closer he rolled towards the surface of the brain the more of a spread there was. I asked if it was blood from a brain bleed and he said yes. He explained that what likely happened was that when she hit the ground, which cracked (or more accurately pulverized) the back of her skull, her brain sloshed forward and slammed against the front skull causing the bleed. It seemed that the blood seeping through the back was keeping pressure from building up.
One of the hardest things for me to deal with in this moment was a sense of helplessness. My mother had been powerfully clear that she wanted no extreme health care interventions whatsoever- none. For example, if they thought they should drill a hole in her skull to relive pressure, I knew that she would not want it. We had taken her to the smaller hospital she recovered in previously, but they didn’t have a brain care center so arrangements were made to move her to the other hospital. The nurses pulled me aside and asked for clarity on her health care detective. It was something we had discussed in the meeting 4 days earlier so it was easy for me to clearly state that she wanted no interventions. The nurse explained that if she went into cardiac arrest they could not do chest compressions or other life saving activities. I said I understood. He said, if it was my decision to make, that’s the one I would as well.
As we waited on the ambulance I went outside to call my brother and my sister. I didn’t take any pictures but I remember standing outside in the ambulance drop off circle. I remember the shiny metal bollards that lined the entrance. I explained the situation to both of them and expressed my fear that she would not make it. Saying those words outlaid was grounding, and even as I said it, I was less afraid of it.
She did make it, and within hours she was her feisty, if confused, self. When I got to the hospital I spent some time with her in the ER as the waited for a bed in the Brain Care Unit. She was uncomfortable, but a little more with it. When they got a room I had to sit in the waiting area for a while, and I was struck with feeling and memories from our previous ER. When I was allowed in my mom was ordering everyone around. When she saw me she told the doctors that I was going to take her home, and she started to pull at the wires that monitored her chest and the IV in her arm. I tried to explain to the doctors what was going on; that she had had a very bad fall and needed help. She firmly told me to go get the car. After some back and forth and many anxious looks from the various caregivers in the room I said, “Mom, I love you, but I know I can’t help right now so I’m just gonna go.”
That was a very tough decision; frankly, it’s hard to describe just how tough it was. A few hours earlier I was afraid she wouldn’t survive the drive from one hospital to another. At that moment I wasn’t sure I would survive another five days like the ones I had spent in January when she had pneumonia. I have a tendency to push beyond my capacity. About two months earlier I had started to do yoga, and already it was paying dividends. I was more able to see the pattern of my own behavior, and interrupt it. I knew it was not going to be good for me to stay, and that it might not be good for her either. I stood outside the room for a few minutes, confused about what to do. Finally, I headed outside and walked home. This hospital is only about a mile from my house, so I took my time, breathed deeply and worked on accepting that it was going to be a rocky ride.
When I got to the hospital my mother was awake. I think she might have even been sitting in a chair by her bed eating breakfast. A big purple bruise had begun to spread down her neck, apparently from the crack in her skull. Thankfully, it seemed to be relieving pressure in her brain, but it was wild to see. I asked the doctors about the previous evening and found that they had restrained her because she was a danger to herself, but she didn’t seem to remember. Even still, I felt a little bad about having left her; as if I had betrayed her. However, I knew that she would have been unreasonable, relentless, and insistent, and that my being there was not the thing that was going to save her. I felt that way in January, but this felt different. It was a different kind of illness. This was a traumatic brain injury, and as we came to see, everything from then on out was going to be unpredictable.
A doctor came in to do a cognitive test. She was very good at figuring out what some of the answers were, but she was not so sure where she was, where she lived, or what had happened. Still though, she was fairly able to communicate. I’m not sure what they were doing for besides blood thinners and monitoring her vital signs. By the next day the had moved her to a regular room.
When I got there the next day she wasn’t doing well at all. She had a hard time waking up, eating, or being present. She felt nauseous and her head hurt. She choked a little on some water which worried my sister and the doctor. They scheduled an endoscopy for her a couple of days later. By the late afternoon she was feeling a little better and I brought the family by to see her. She perked up and joked around. For the next few months it felt a little bit like we were living on a roller coaster. Things would improve and then they would regress. It was really hard to get oriented to this new reality. With the kind of fall she had there wasn’t a lot that they could do except work to keep her vital signs in balance and monitor her.
My family had a trip planned to California to go visit schools for my daughter. It was touch and go whether or not I would be able to go with them. The day before we were supposed to go my mom had the endoscopy scheduled. I went to the hospital to be with her and I had a very bad feeling about it. She was extremely out of it, and given the way she reacts to anesthesia it didn’t seem like a good idea. On top of that, I wasn’t sure that the endoscopy was necessary at the moment because swallowing was not a persistent problem. When we got down to the surgery waiting area I pulled aside the nurse and pointed out that it didn’t make sense to do it. I explained how powerfully she reacted to the anesthesia and expressed my fear that this exploration might be too much. She brought in the doctor who immediately agreed that the risks vastly outweighed the benefits in that moment. We took her back upstairs. A few hours later she was much less groggy and ate a little bit of food. By that evening she was feeling well enough that they arranged for her to go back to the care center at her retirement community the next day. My brother came down from NY to help my sister deal with the transition and with getting her settled.
The first day that I was in California I got a call from my brother. After getting her moved into her room at the care center of her retirement community my mother had insisted on walking my brother and sister to the elevator. As they walked down the hall she collapsed and bumped her head. She was ok, but it was traumatic for my siblings and it became clear that she was going to need to have a bed sitter to make sure that she didn’t fall in the night or try to do something to hurt herself. It was difficult to be away during this time, but also important for me. As I had observed in January, I sometimes feel a need to take care of others in a way that can be overwhelming. So, in some ways it was harder for me to not be there, than it would have been to have stayed back to take care of my mom. However, I also knew that this was something I needed to work on being present with. The yoga was helping with all of this.
The following is taken from a post that I wrote once I got back from California. The first part details much of what I wrote above. Below the picture I’ll add the last part of that post.
“Her brain and body need some time to heal and we are taking it day by day. Yesterday I was able to get her outside and that perked her up a lot. My sister has been a total champion, spending several hours a day with her to help her feel more settled and attend to her needs. I’m doing my best to also be there as often as possible as well. For two weeks she has had a full time bed sitter who makes sure she doesn’t get out of bed without help, which she doesn’t like. Since she had been sleeping later and later we decided to not have one from 6am till noon. Yesterday I got there at 10:45 and she was in the bathroom. She’d gotten there by herself. While it’s great that she was able to do that, it was clearly dangerous since her blood pressure has been very low which makes her a very strong fall risk. The bed sitter was full time last night.
She was more awake than I had seen her in days but she tired quickly and indicated that she felt awful. When the Occupational Therapist came in we almost decided to push her visit to later, but we changed course and encouraged my mother to sit up so I could take her outside. The sunshine and the warmth seemed to have a very powerful healing effect. I’m going to head over soon to do that again. I had a really nice day with my mom yesterday, but it left me a bit restless this evening, so I’m taking this moment to not get lost in it, and instead bring my attention to to those thoughts, feelings, and worries. I’m not indulging in them but also not resisting them. Its often when we are in a space of resistance that we kind of trap these feelings and thoughts in an anxiety loop. I see this in my mother a great deal and I’m doing what I can to unwind some of those patterns in myself. It’s not easy, but I have a more visceral sense of just how important this effort is.”
It’s interesting for me to look back at this writing and to try to unwind what was going on with her and what was going on with me. In addition to having a good deal of anxiety my mother also struggled with depression. As her condition went up and down and it difficult to differentiate they physical from the emotional from the mental. As it says above, I quickly learned that for her, being stuck in her room was somewhat torturous. At the same time, depression, brain fog, and lack of motivation made it difficult to get her out sometimes. However, I learned to either be pushy, or get a nurse to be pushy, because almost every time we got her outside we saw profound improvement in her mood and her connection.
The images above were posted to Instagram by me on June 6, 7, 8, and 12. The first two weeks after I got back from California we saw steady improvement. I think I got there pretty much every day for a few hours. She had full time aides, and it annoyed her a great deal. She would be pleasant with them for a while and then announce that they had to go. Of course they couldn’t go away, so she would get very frustrated. While she was increasingly mobile her mental/emotional state was very variable. She was having a lot of difficulty sleeping as well. When I checked the notes that the aides left they often included hourly notations that she wasn’t sleeping.
I ended up going in the afternoon and staying for an early dinner. On Tuesday and Thursday I’d run off to do yoga afterwards. During this period I had gotten pretty good at getting her outside to sit by the fountain. At first she was walking a good bit, but she was frequently worn out so we would get her down there in a wheelchair. In general there weren’t too many big swings in health or mood during this time frame, but there also weren’t the kind of improvements we had hoped for. It was very tough to get her to do the occupational therapy or the physical therapy. This was tough, and I focused on being aware of what my expectations were and how that affected both her and me.
That’s as far as I have gotten. I’m going to go ahead and post this to take some pressure off of myself. This will be an evolving work in progress- and I welcome your feedback