05 Dec About My Mother
This post/rough draft of the beginnings of a book is focused on my efforts to deal with my mother’s decline and ultimate passing, largely in real time. In her last year 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 decidedly 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 connect with, and articulate, some of their 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 individuals who are suffering these difficult realities, puts a profound pressure on 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. It was a tightrope.
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 the situation 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. 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 and the fog of grief did not magically lift after the anniversary. However, a couple of weeks after that weekend 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”.
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. In early December of last year, the 12th to be exact, my mother would have been 86. So, I set a new goal of putting up something to honor that date. Now I am going back through it in order to share it this September on the second anniversary of her death. I’d like to make a book with a lot of photos, but also the text that seemed to help others make peace with their own situations.
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 a 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. In the years before she moved she had a series of falls that led to stitches, a broken nose, a broken arm, and lots of ER visits. That’s part of what prompted our move. 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 had developed 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 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 explicitly.mind receiving 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 over her eye at a museum in NY (image above). A couple of months later she fell and hit her head. That’s when they discovered a problem with her thyroid. 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. She was not only putting herself at risk, but also others and it was hard for me to not try to address that problem.
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 she started to badger me about it while I was doing it. The small conflict that we got into 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, which went unresolved, subtly affected our relationship 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 while my mother could rarely pay attention to them. So, this conflict over the clearing out of my room had less impact than 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 was acutely aware that if I said the wrong thing 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 in some ways 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. To be clear, that tension wasn’t “palpable”. No one else would have noticed it. It was more steeped in avoiding conflict than it was any kind of actual conflict.
When my dad was hit by a car and killed, my mom was overcome with grief, and she never really recovered from that loss. There was an earthquake like shift in our various roles and responsibilities within the family. When I arrived home the morning after his death 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 sobs. 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. 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 seemingly had no way accept 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 talk to her doctor about her health. This 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. I think that she had some attention issues, so excelling at the things she suggested we do was one way of getting her attention. She encouraged me to enter essay and poster contests. I won a few and that made her happy for me.
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. My father cooked, and by the time we were 10 we did the dishes. Then she would retreat to her study to work on grading papers, planning lessons, 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.
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 for professionals who dealt with issues related to emotions. My father rarely came out on top, not because he wasn’t a good fighter, but because she was just too tenacious. 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 of 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 as ferociously as they did, 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 pushed us pretty relentlessly to develop skills and interests. My mother was unconditionally encouraging in a way that clashed with my father’s outsized expectations. His unreasonable expectations of greatness undermined the sense of belief that she tried to instill. This wasn’t something that I always understood, or appreciated in the moment, I 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, partly because I was conscious of not setting unreasonable expectations like my father did. 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. Still, 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 an increasing 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 a 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 react from a place of panic. It’s called amygdala hijacking. When you shock a person with a scary scenario they can lose their capacity for critical thinking. The last time it happened she believed me when I told her 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 rush up to the hospital which is a mile from our house and wheel her from the dental school to the hospital to keep from having to put her in an ambulance. On another occasion she had to have a surgery on her nose after she broke it in a different fall. 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 often had a strong reaction to anesthesia. She berated me for trying to control her and she was sure she would be fine 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 that 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 repeatedly. Year after year seh had her accountant re-send the same forms so she could sign them. She talked a lot about her fear of losing her memory, and complained about it, but still kept so much hidden from us. In the Summer of 2018 things began to get worse.
Part 2. Autumn 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 increasingly 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 whirlpool. At the time, I began to do some writing about my experience with her situation. As her health issues increased I continued to write and use photographs to share my experience. This work resonated with people and I got a lot of supportive feedback from those 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.
In September of 2019 my mother began to have more serious problems with her memory, and her anxiety over that made the problems worse. Some stressful family issues were going on, and those were exacerbating the anxiety. I tried to get her to get some help with the anxiety but she was very resistant. She had been doing bi-weekly mindfulness meditations with an instructor, but they were too far apart, and her situation was too intense, for these sessions to make a sustained impact. The efforts that I made to help her find more calmness tended to prompt her her lash out at me, so I felt a bit helpless. For example I could witness the anxiety ramping up in real time as she talked to me about it and I might suggest that she take a few deep breaths to help her calm down, but this would make her angry. This pattern continued throughout September, October, and into November. In November I realized that some of her anxiety had to do with aging, and her birthday which was coming up in December. The previous few Decembers had been hard, partly because December 30th was also her wedding anniversary. I think that she and my father had gotten married when they had travelled from grad school in Michigan, back to NY for the holidays. I have some pictures of them in the wedding outfits at my mother’s house.
My mother had always struggled with anxiety, but as she lost some of her intellectual prowess she also lost some of her resilience. She no longer had the capacity to cover for her cognitive loss. As long as I can remember she told a stream of white lies to avoid entanglements. If she agreed to go so someone’s house for a party it always came with the caveat that she might have to go to another event right after, so she’d have an excuse to leave. Her memory problems stressed her out even more because she couldn’t remember which excuses she’d given for which events. While the fall was rough, things got much more complicated around her birthday in December.
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. She was being a bit mysterious and I was confused. It turnd out that they had seen her wander past a bar they were in and ran after her. 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 and didn’t know what to do. 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 eventually found the car I had to let her drive home, and I was only allowed to follow her half way. Thankfully, 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 that she had barely slept the previous night. I had offered to take care of her car inspection, but my mother insisted on doing it herself. That night at around 9 I got a call from her retirement community, letting me know that she was on the way to the emergency room due to shoulder pain. I jumped in the car and headed out towards the next town over, where they had sent her.
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. A couple of years earlier I had completed a film about the connection between pain and stress. 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, or done anything that might have caused an injury, so I wanted to make sure she was checked out as swiftly as possible. I wanted to get her out of this emergency situation because it created even more pressure. 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, and 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 because she had smashed them all (the cost 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 still, she struggled to accept help.
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 was always pretty good at putting on a positive public face but I knew that she could be stalked by the black dog when she was 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 the semi calm before the storm. 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 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 had 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.
A couple of days later I spoke with a social worker at her retirement community who asked me to watch her car for her. When she went for her check up after the ER visit the doctor took away her driving privileges until she passed a driving test, so she wasn’t allowed to have it at her retirement community until she took the the test. I later found 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 eve and my brother came down to visit. We all went to a nice meal with my mom. She still seemed a little down and under the weather, but was in good spirits for his visit. I think the above picture was taken on the second or the third of January.
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 spent the early afternoon watching a UNC basketball game. Then, since I was feeling under the weather I took a nap. I woke up 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. My sister said she felt that she was too upset to drive, so I headed out to check on my mom. I was told they were headed to the hospital about 20 minutes from my house, in Hillsborough. I rushed to get there and remember feeling quite nervous. When I arrived I found that she wasn’t there. I had to assume that 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 clearly 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 quickly parked near the hospital and ran up to the Emergency Room. When I got past security I found her squatting on a bed in a panicked stats. I immediately saw that her heart rate was around 165 and her oxygen was very low; well under 90. She was panicked. By simply putting a hand on her and talking calmly I was able to watch her heart rate slowly fall. Soon, I got her to the bathroom. It was a complicated process because she needed oxygen (which she kept pulling out of her nose, and she had an IV in so I had to wheel that as well. The first time she was modest and wanted me outside, so I had to get a nurse to help her. By the next night I was regularly wiping her bottom (the antibiotics they gave her caused powerful bowel movements). She also started to think that 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 geriatric patients. It was a relief to know what was going on, but she was still very unwell and the situation remained quite worrisome. I was not all that confident that she would pull through. As I waited for the transport crew to show up I was holding her hand. As I concentrated on keeping her calm I got a text from my cousin letting me know that she had just talked to my daughter Holly. She asked if I remembered that I was a sperm donor. I did, and had been working on a documentary about the subject for a decade. I was both elated and overwhelmed by the news. 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 finally 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 to do. 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, at around 1 am, when I had still gotten no more information, I got a little pushy and asked to be let in to the ward. She was agitated as hell, but once again, just getting a familiar hand on her helped her to quickly calm down. She finally fell asleep fitfully. I got almost no sleep myself. Following are a picture based post and some more writing about that time period from that time period.
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 to the emergency room, she was in a panic – which is why her heart was going crazy. I got there and was able to help her calm down. 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 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 flow. What I can see is that those things that we have the strength to hold in, or repress, when we are strong, can 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 up-lifting. 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 to her cottage 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 problems. 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 for a dinner cruise, 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 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, and 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. Mostly, we decided to just let things be thrown out. It was a moment of transition in my life in many ways. We were preparing to sell the house, 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 meditation on her own but she was resistant. She took her driving 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 on my part she reluctantly 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. After that difficult visit 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 and did not feel like it was safe.
Since I had the strong belief that many of the issues she faced with her memory, as well as her seizures, 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. I remember that as we all assembled it felt like a meeting with a lawyer to settle some kind of difficulty. 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, then roll back in her head, 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 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. 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 health care 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 nurse alerting her that our mom had fallen, but that she was ok. She was told that our mom was going to stay in the health care center overnight for observation, and that 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 11 pm. 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 completely out of it. 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 very worried as I hustled to the car, so I called the facility to try and alert them but had trouble getting through. It was about a 15 minute drive to her place and while I wasn’t panicked, I was stressed out.
When I pulled up she was standing in the driveway of the health center and clearly agitated, but relieved to see me. She had a big bandage on the back of her head. I got her to go back upstairs with me, and the nurse was very glad to see both my mother and I. It turned out that my mother had slipped out through a locked stairway door when someone had come in, so it surprised me that no one had come out to get her since she was right outside the front door. She was mobile, but agitated. When my mom said she’d gone to get her night gown, 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 took me aside and 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. Still, the nurse’s level of concern stuck with me.
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 they found that my mom was clearly not well. They decided to put her in our 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 they had put on her 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 had likely sloshed forward and slammed against the front skull, which mostly likely caused the bleed. It seemed that the blood seeping through the back was helping to keep pressure from building up inside her skull. Still, she had a terrible headache and other signs of a major concussion,
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 in town. 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 in the ambulance they could not do chest compressions or other life saving activities. I said I understood. He explained that if it was his decision to make, that’s the one he would make 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 in the ambulance drop off circle, leaning on 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 out loud was grounding, and even as I said it, I was less afraid of it.
She did make it to the hospital, 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 feelings and memories from our previous ER visit in January. I went with her as they took her upstairs, but had to go to a waiting area while they checked her out more thoroughly.
When I was allowed in about an hour later 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 her what was going on; that she had had a very bad fall and needed help from the doctors. 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 and let the doctors help you.”
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 long minutes, confused about what to do. I almost went back. 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. To me that seemed like torture, so 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 her 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 and 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.”
My mom has spent years making magnets. She calls it her “art of the sea” because it’s shells and ephemera from her beach walks. While visiting yesterday I walked over and grabbed some of her magnets and they cheered her up. She likes to give them to people so I brought some for her to do that with, but also to connect her with her home. I kept this one because it cheered me up. She never felt competent as an artist but she found some books that gave her simple tips for creating figures and she used them to make birthday cards for all her kids (and grandkids) every year. I still have most of those cards. She labored over them and created a profound snapshot of my life. She also inspired me to make art. Recently she stopped making them because she couldn’t hold a pen for that long. It’s been a very difficult year for her with numerous illnesses and now this fall. She’s wildly tough though.
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 it was difficult to differentiate the 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 hard, and I focused on being aware of what my expectations were and how that affected both her and me.
In the middle of June my mom stopped speaking for a while. She could sing but she couldn’t really communicate with words. On this day we took her for a walk and she started to sing Take Me Out To The Ballpark. At the end she yelled hello to someone. It was really nice to have her communicating with so much energy after a few days of deeper depression and pain. The brain injury really complicated things emotionally because it made the situation more roller coaster like. Some days would be good and then it would get bad again. There was no sense of a clear line of healing. This made it difficult to feel grounded. It challenged me to move more towards just accepting things as they came. The more I did that the better she seemed to do. On this day we walked a little further. I suggested having her go see her old place so she might have a forward force to get back there. Unfortunately, that seemed to affect her emotionally and about 200 yards later she had a strong seizure. First she froze, then she shook a little before slumping forward. It was my first experience of one of these seizures and it was hard to process. I’d end up seeing more of them, but some medications they tried seemed to lessen them. All of what she was going through seemed to stem from the whack on her head.
This caption was with the following 4 images
For the past six months my mother has struggled with illness and increasing memory loss, as well as fear of that memory loss. She has been fiercely independent her whole life so it’s been a real struggle for both her, and myself, to find room for me to help her. I turned 50 in February and have become increasingly aware of my own mortality, as people around my age start to drop like flies- a phenomenon that is amplified by social media. As a photographer and writer, I process some of my emotions around both my mom’s aging and my own life by making images and writing about the situation. I have hesitated to write about my mother’s health because it feels so fraught to discuss it, but I have begun to gently explore the subject. These simple posts have been met with a flood of stories from friends who struggle with their own parents health care woes. As a culture we carry a lot of stigma and shame around aging, so people seem desperate to connect around their own experiences.
My mother’s anxiety blooms in her room so I try to get her out. It was so hot yesterday I couldn’t take her for a walk so I wheeled her through the air conditioned halls. She was a bit out of it yesterday and sang rather than talked. It seemed to make the other residents uncomfortable. I understood it, and understand it- but it does push me to write about these realities. There is nothing shameful about having a brain injury. I’m not sure it’s something we should be embarrassed about or uncomfortable with. A friend of my mother’s cautioned me to protect her dignity. I am very conscious of that need. There are some tough moments that are too personal to share, but I also think it’s important to explore the balance between sharing enough to help others process their own emotions and not so much that it would impinge on her dignity. I love my mother very much, and it is through this lens that I document her struggles.
It’s difficult to watch our loved ones struggle and suffer. However the best way to alleviate their suffering is to accept that suffering. When we try to hide it away we do them a disservice and we continue to accept an unconscious idea that aging is something to hide.
Just a quick report to say that while my mom had a tough week, yesterday was a bit more connected, and we are addressing some of the concerns we’ve had with more vigor. She has not been sleeping well and that is first on our list of priorities to address. Healing, and aging, are complicated processes that move in a non-linear fashion. As Rae, who helps manage my mother’s care, says quite forcibly and compassionately- “Take it one day at a time- one day at a time.” Important advice because it’s so natural to take a bad day as a future projection. One day at a time is about being present on that day and meeting my mother where she is rather than where I wish she was -or while worrying about where we are headed. She is also lucky to have so many friends who, like us, while struggling with her changes and her situation, are meeting her where she is and supporting her. While it’s been a tough month we are all so grateful for the deep network of support that she has- and the many compassionate aides who also work to help her to feel supported.
When I arrived today the woman who stayed over night said my mother didn’t sleep a wink. Given that she’s barely slept for the past moth I was hit with a pang of dread. However, she’s doing great today. Much more verbal and connected.
In the middle of last week my mom was quite confused. I believe the situation is exacerbated by lack of sleep. I read the notes from the overnight aides and it’s clear she’s getting almost no sleep at all. The facility is working on it but we aren’t making much progress. However, this weekend despite the lack of sleep, she was much more connected. We had a great time with her yesterday. It was too hot to go outside but we talked, sang, and had a foot battle. The aides who have been there for a while have developed stronger relationships with her and are able to help her more. One day at a time. I’m grateful for how much I’m learning from this process and how much I’m still able to learn from her. To be clear this process is often not fun, but I’m learning to be with that- to not resist it physically or emotionally- and that in itself is a great gift of the situation. In the notes it’s clear that there’s a lot of expression of discomfort throughout the night. I’m trying to be with the idea that this has more to do with the filter being off. If it comes into her head it comes out of her mouth. Yes, she has always been unfiltered but now there is none.
update: I just want to say that I am doing well;) no one need worry about me- Im just telling what’s going on but I’m not feeling overwhelmed by it- I feel so thankful for Dr Sarno- and the work on that film which helped me to find a more centered way to be in the world. I also have profound support from family and I am able to support them in turn- I am writing all this because its useful for me to put down the context and I have gotten such powerful feedback about how much it helps others process their own context. Having said that- thanks everyone for all of the support, encouragement and advice- it’s all helpful.
I missed visiting my mother yesterday because I had to work on a project, but my sister reported that she was doing better, though still not sleeping well. I got a couple calls from my mom last night, which is unusual. She was a bit frantic, nervous and confused. The aide assured me she was ok so I let it go, but was determined to get there earlier today. When I arrived around 2 she was in bed and anxious which manifested as being itchy and uncomfortable. I checked the aide notes and saw that she hadn’t slept a wink the night before. Several people have mentioned cbd oil to address this issue. I brought it up with the nurse and they will look into it. The aide and I were able to get her up and out for a walk. As we left a nurse gave her an antihistamine which helps with the anxious scratching- but it also tired her out. The walk was good, but after a lap around the floor she got very tired. We got her in bed and she fixed but woke up in a panic every two minutes. It occurred to me that she’s scared of falling asleep. It feels a bit like trying to get a child to sleep because there’s so much resistance. My friend Ras like to say “once a man – twice a child” and accepting that truth is useful- especially if we can do it while recognizing that children and older folks also thrive when treated with respect and given agency – while also being protected from themselves – a hard balance to maintain. I spent an hour working with her to get her to relax but it was of no avail. Instead I sat her up and got her ice cream. In general though things are moving in a more positive direction. I just hope we can get her to sleep.
Later on July 3
Mom was totally mobile tonight, annoyed with me for worrying about her, and quite a bit more connected. She was walking quite far without a walker or a wheelchair. Worlds better than last week at this time. As per all the advice I got her some cbd oil and kava candy – here’s hoping for good sleep.
My sister and I visited around the same time yesterday, around noon on the 4th of July. The night before I’d gotten her some CBD oil and it seems as if it was helpful because she had slept some that night and her language and her ability to communicate had improved. However, her level of agitation and demand for agency over her own actions had also increased dramatically. It was reported that she’d had a very difficult time trying to make a shower happen because she wanted to be left alone. However, as she is still at risk of a fall they wouldn’t allow it. When we got there she was back in bed and wanted some help with her shoulder. My sister rubbed it for a long time. We were trying to get her to come to breakfast but didn’t have any luck. She wanted time to gather her thoughts but wasn’t really able to gather them. At that point she insisted that we all leave, but the aide is not supposed to. Finally the nurse told her to sit outside. At that point I left. While it was a little frustrating I was very buoyed by how much better she was physically and mentally.
Today I heard from my sister that she was doing great earlier in the day. There was some packing and unpacking but they also walked around for about an hour. She then did occupational therapy and her friend came over to work in an art project. When I got there she was eating dinner. I hadn’t met the aide who was with her, but she had worked last Friday and was shocked at the level of improvement. Again while her physical health and cognitive abilities were vastly improved they’d brought with them a heightened sense of anxiety.
After dinner I tried to get her outside but she was very confused about where she was staying. She was packing everything up despite the fact that I explained that she wasn’t leaving. In these moments when she’s stressed she can get quite short – mean really, but in general I’m able to let it roll past- it can be a little difficult though.
We eventually got outside just before it rained so the sky was intense. My mom kept asking about “the movie” so I asked at the front desk and it turned out they were showing Apollo 11. We walked over and she seemed to really enjoy it. I left before it was over. Still trying to take it one day at a time. Last week at this time things did not look good. While the anxiety isn’t great- I’ll take it- I’ll accept it as it is and I will hope fir an even more robust recovery.
Steady as she goes
Another day of physical improvement. No need of a walker or a wheelchair, which is a big leap forward. Sleep has been a little better and while there’s still a good bit of confusion we have been having much more connected conversations. There’s a new flower garden with a water fall and mom loves to collect the rocks that line the path. One day at a time.
The confusion and concern was more pronounced today making it a little hard to leave. Her friend Nancy had brought her zinias which she loves. We went outside but it was as a little too hot so that ended quickly. I take a lot of pictures because the pictures don’t reflect the concern. The pictures are eternal and overflowing with life. Everything feels a bit up in the air right now- uncertain, but the pictures feel so solid. Today she wanted to make sure that she didn’t have to get involved- she thought there was conflict and she wanted it to get resolved without her. There is/was no conflict. We all just want what is best for our mom. She moved to Carol Woods to spare us having to take of her. We don’t mind taking care of her.
I didn’t take any pictures today, this is from two days ago. When I go to her facility I spotted my mom waving an aide away in the parking lot. This was surprising. It turned out that she had been intent on leaving and didn’t want the aide, Joana, following her around. We got upstairs and I tried to help her understand that she has to have a helper but she couldn’t quite get it. We tread a lot of the same ground as yesterday and I reassured her that we were all getting along famously. It was a little hard to leave again because she seemed unsettled- I know my presence helps/ but only so much- so I do what I can and go. The good news is that she is vastly improved both cognitively and physically- but that seems to have created more energy for anxiety.
Small victories. My mom was much less anxious tonight. I gave her some mct oil (coconut oil) at the suggestion of a friend. As I left she asked if we would meet at Carol Woods tomorrow. It’s been a while since she remembered where she was so that was pretty great. MCT oil ? Who knows, but I’ll take it. [i saw a video about how MCT oil can help with early stages of Alzheimers and I got her some. it did seem to help but also gave her the stomach troubles]
My mother continues to become more physically mobile. Her memory also seems to continue to improve. It’s way too early to say but it does seem like there is a genuine increase in her sense of where she’s at. Having said that, I got a call from my sister shortly after I left because she was anxious and confused about what was going on. Still, we are very happy about all the improvement. I picked up her mail today – it’s almost all renewal notices for causes she donated to. I helped her with this process in December. Now I see that she has been trying to keep up with it by donating without realizing that she’s doing it monthly at times. She gets a half dozen appeals every day
My mother continues to become more physically mobile. Her memory also seems to continue to improve. It’s way too early to say but it does seem like there is a genuine increase in her sense of where she’s at. Having said that, I got a call from my sister shortly after I left because she was anxious and confused about what was going on. Still, we are very happy about all the improvement. I picked up her mail today – it’s almost all renewal notices for causes she donated to. I helped her with this process in December. Now I see that she has been trying to keep up with it by donating without realizing that she’s doing it monthly at times. She gets a half dozen appeals every day
July 12 evening
It was an uplifting afternoon, but a short visit so I decided to stop by tonight just to check in. When I arrived I found my mother in the lobby slightly agitated. The care person with her was keeping her distance. I asked if she wanted to take a walk. She did but wanted to put her stuff in her room first. When we got up there I found that she’d packed everything up again. I started to unpack a bit because I wanted to find her sleeve that she needs to keep her arm from swelling. I couldn’t find it but knew That my searching was making her uncomfortable. She and I went out for a walk and left the care giver to rest. I was able to calm her down with a visit to the garden and waterfall. She wanted ice cream so we went back up. Up and down, that’s how it’s gonna go. It’s not always easy to accept but it’s gonna be how it goes nonetheless.
I talked to my sister, who went earlier to see mom, a few times during the day and heard that she was doing a lot of worrying about organizing. I got there a half hour after she left and my mom was lying in bed but in good spirits. Her things were all in bags in the closet so I gently unpacked them while looking for her arm band which appears to be gone. We then got her up to walk around the hall before dinner. She was in a good mood, less confused than the past but a little less connected than the day before. However, the sense of presence picked up during dinner and we took a long walk through the buildings. Trying to take it one day at a time.
Self-portrait with mom.
Over the past couple of months my mom’s physical health and cognitive ability declined precipitously. Two weeks ago she was in a wheelchair and not really talking. However, over the past 2 weeks they’ve both improved quite dramatically. We still have a ways to go on this journey, but there’s been a lot of healing and learning all around. I’m grateful for all the support and advice and for how this situation has brought our family closer. No one would want this, but difficult situations create opportunities for change and transformation and when we look at them from this perspective it can be quite powerful.
Up down and all around. My mother’s cognitive abilities were very improved on Thursday and Friday. Saturday and Sunday she was much more anxious and confused. I didn’t do as well with it yesterday. When I got there she was busy packing stuff up to bring it home. I tried to explain that there wasn’t anywhere to bring it and she got very frustrated with me. Frankly, I wasn’t as good at meeting her where she was yesterday. My joy at her previous improvement left me feeling more “attached” to that “progress” than was useful. Still, I didn’t do terribly, I just found it more difficult to be with because it is hard to be with. I was also told that she had a fall that morning. It was likely from a small seizure. When she fell she bumped her foot and it was bothering her. On Friday the decreased her seizure meds slightly as she hadn’t had one since June 28. I had advocated for decreasing because I understand that the seizure meds may contribute to the confusion. We had also discussed limiting the companions because their presence is a catch 22. She needs them because she is often confused and agitated. At the same time she has always needed a lot of space – so the companions agitate her which makes her more confused. One. Day at A Time
More connected today and much less anxious- no one is sure where the head bump happened. Had a nice walk and there was much more situational awareness – like looking for roses where the roses grow. Her foot is much better today as well.
I was out of town yesterday but got a series of distressing reports from my sister who was with our mom for 8 hours yesterday. Before she arrived I got a text from my mother’s companion letting me know that she had had a long seizure and a fall. My sister arrived shortly after that and there were several other seizures and falls during the day. It was difficult to be away as her situation became increasingly distressing. By the time my sister left my mom was in packing mode and had called the police (Security). As I drove back today I got a report of a mild seizure and a calmer demeanor. I arrived at 5 and we had a pleasant dinner. She didn’t eat much but was a bit calmer than I expected. After dinner she and I went to the waterfall despite the heat and then for a long walk. There were many encounters with people who were excited to see her out and about. When we got back things shifted. She explained that she was very upset with me for controlling her. She made it clear that she wanted the companions to be gone. She had no interest in hearing that it wasn’t my decision. These situations can be very difficult. I try to explain that I want her to be safe, autonomous, and happy but it’s difficult for her to comprehend. I got a nurse to try to explain the situation and I pulled a breakaway.- cont- it was time to go and my participation wasn’t going to help so it was time to go. I am taking it one day at a time and some of those days are more difficult than others…
Mom’s Art of the Sea – My mom made magnets for years. I had to go by her place to look something after I visited her at the health center. I saw this display that I think she put together for the Carol Woods community. Almost everyone she met has some on their fridge so they often remind me of her.
I was looking for some older mall images on a drive today and found this photo of my mother from about 10 years ago- as well as a folder of scans of the hand made birthday cards she made for me every year until recently. This photo was made a couple of days after a trip to the beach- the year after we put my father’s ashes in the ocean. We were staying near there when a wind came up and slammed the screen door on my mother’s arm….
Can you help me find Dad’s obiturary?
Another day another smile
The Fig tree is fecund
July 26th later
Tonight was the best night we’ve had with my mom in weeks. This past week was quite difficult with a couple of traumatic falls. Tonight though she was very connected, in great spirits – singing and dancing. A one day at a time roller coaster.
Today I took my mom to see my show at the NC Botanical Gardens. It’s the only time she’s left Carol Woods since her fall except for 1 doctor’s visit. Frankly, it probably wasn’t the best idea. She wasn’t in a good place, but it felt important to me because she had encouraged me so much in my life and I felt like it would be meaningful to her. She didn’t really seem to understand what was going on and the trip was exhausting to her.
We are headed to the beach for a week. It’s been nearly 3 months since my mother first fell and cracked her skull and had a traumatic brain injury. Since then it’s been a wild roller coaster of health crises, seemingly miraculous recoveries, and surprising setbacks. Despite the many falls of last week she seems to be in a bit better place. Still, it’s difficult to go because I’ve visited her almost everyday for the past several months. Thankfully my sister has been visiting even more and will be there while I’m gone. My daughters visited with me on Friday. My older daughter -pictured here – has a lot of my mother’s genes- so there’s a very strong connection there. We had a great time outside looking at the rocks and flowers and taking pictures. I had to take my brother to the airport and my daughter stayed to hang out a little more. Within moments of our departure my mom switched from affable comedian to frantic packer. She started in on getting the drawers and closets emptied. This is part of her anxiety brain injury mashup- and also seems to be connected to a metaphorical need to leave in general. Thankfully there was an aide there as well so we told her to just split, which she did. I talked to the nurse a little later and she was resting peacefully. She hasn’t slept much during this whole ordeal, but we started her on some anti-anxiety meds a few days ago and that seems to have helped. She was tired yesterday but in a much calmer space. My hope is that this might lessen her urge to flee. Still, though, a word like hope is fraught, because it feels more settled to just accept her where she is and not where we want her to be. At the same time resisting hope is also a waste of energy;) so it goes.
I went to the beach for a week with family. My sister held things down while I was gone and things were pretty steady as it goes when I got back. She’s wearing earrings that I made her 20 or 30 years ago that I found in her place recently. We lost one within five minutes. So it goes.
Healed up, tired out, and sleeping
I just got home from a week of travel and went to see my mom. She was very concerned about her tickets and was mad at the airline….(there’s no tickets or flight)- so I talked her into going to get a shaved ice as the retirement community had hired a shaved ice truck. When she saw it she was concerned it would pull away and she sped up. In about 1993 I was working a PA job picking up film gear in a cube truck with my friend Steve. We spotted an Oscar Meyer Weiner truck at 45th and Broadway and then a crazy woman jumped in front of it as it tried to pull away from the curb- yep- it was my mom and I didn’t even know she was in NYC…#true After the ice we saw that they were setting up for The Wizard of Oz. When I was a kid the family would sometimes watch movies – my father was obsessed with films- and my mother couldn’t sit still. Not much has changed. She couldn’t sit still, until she finally fell asleep for a few minutes.
Today was hard. Suki and I started to clear out the detritus from my mother’s cottage. She is still very much with us, but is clear that she won’t be moving back to her place, so it’s time to clear it out so we can make it available for someone else. We moved to chapel hill six years ago when she moved there. Frankly, her memory and organizational issues have been around for a while and that’s made very clear by digging through the piles that covered her chairs and her couch. Everyday she cut out articles for myself and others- and she filed them in these piles. The number of requests for donations are overwhelming. Every time she sent a check they sent six more requests. There are also a lot of articles about aging, memory, and loss. She had a great fear of losing her edge and that fear gently pushed her over the precipice. I’m struggling with a kind of middle ground grief; awareness that we are losing her, that we have lost part of her already, without the solidity of loss. It softens the blow in a way that’s confusing. Today’s efforts brought some of that to the surface. I didn’t have the energy to visit afterwards. I’ll see her tomorrow – edit- fwiw- it wasn’t all grief- it was so sweet and moving to witness how much she thought about others- saving articles for them – or saving scraps of paper to cut down on waste (sorry but I recycled those too). I’ll be real- she always made it clear that she didn’t want to be here in a compromised state- and she struggles with navigating with less faculty- but she does find some joy and connection and everyday is different. A lot of learning going on all around.
a few fiona pix in the piles
Mom was in a much more active and positive space than I’ve seen her in a while. We walked quite a distance through Carol Woods. At one point we reached a comfortable chair by an elevator and she held court for a good 45 minutes, making up songs, heckling people going in and out of the elevator, and even having a couple decent conversations, though her cognitive connections are a bit challenged. I’m often her husband and her son at the same time. Its a roller coaster and today we were taking the curves with our arms thrust up. She was so much better it was kind of hard to believe. The song she made up was an instant classic
[I was getting ready to go on a 10 day trip to print a book in Italy with a stop in Isreal to show our film. I had been nervous about leaving, but her mood made me feel a little better. However, I was also trying to make peace with the idea that I might not make it back in time.]
Here’s another photo from Friday when Mom was more active and positive than I’ve seen her in months. For a while I was going to see her almost everyday. Before her fall, and especially before this year, I tended to talk with her a couple of times a week and only see her a couple of times a month. She was busy with book groups and plays and meetings etc. When she started to struggle more visibly last fall we talked more and I began to see her more often. It was the beginning of a long stage of crisis that has unfolded in unexpected and unpredictable ways. When she was in the ICU with pneumonia in January I stayed with her through the nights as she struggled profoundly. It felt like she needed a hand on her shoulder to keep her on Earth. That was transformative in terms of our relationship. It also made me feel even more responsible for her. It was a mitzvah and a burden. When she fell in May, cracking her skull, I was more prepared to not push myself beyond my capacity. Still, it was important for me to be there daily. After ten days she had recovered enough for me to make a family trip. While I was gone my sister stepped in and took on the burden. At this point 3 months later, I am working on going less often- because it’s wearing me down – the chaos and uncertainty of it all. Friday was great. Saturday was not. There were several falls and confusion. My sister dealt with it and I painted my daughters room. I’ll go today and I’ll keep on trying to meet her where she’s at. In the chaos of it all it can be hard to find my footing. However, I know that in order to be able to be there for her, I have to work to be present for myself- which means letting go of the impulse to always be there for her. I can’t save her from herself. Thankfully she has great caregivers and I have my sister and brother and my wife and my family and my mother’s friends. As her friends and colleagues point out, she is an incredible woman, and I’m going to keep that thought close. Crisis can be confusing so focusing on her power is clarifying.
Later Aug 25th
Today was kind of the opposite of Friday, when my mom was more vibrant and present than I’d seen in months. Suki and I arrived around noon and my mom was in the dining room rocking back and forth. She could barely open her eyes. She had missed breakfast. We tried to get her to eat but gave up and got her back in bed. Her foot and head were bothering her from her fall last night. This is the roller coaster at the bottom. It was hard to be with, so once she was asleep we went to her cottage to do more organizing (she’s been at the health care center for months and won’t go back to independent living). As I cleaned I found a folder with ephemera from a trip to Israel and another with an article about my father’s fellowship paper clipped to an article about Battle for Brooklyn getting shortlisted. Breaking up this cleaning into short bits makes it manageable and we are making progress. Still, it’s an emotional journey. When we got back she was waking up so we went outside and looked at the rocks. My mom loves to collect things- shells and sharks teeth for example- now she sorts though gravel and river stones. Suki and I took a walk to get a coffee and then we ate dinner with mom. On Friday she was engaged and aware. Today she wanted to know what classes I’m taking. She tried to sip from the spoon like it was a straw. Yet, it was a vast improvement from this morning and at least she wasn’t in pain and she wasn’t angry. I could tell that she didn’t want us to go, but it was time to take our leave. If I stay too long it isn’t good for either of us in the long run. This is an ultra marathon on mountainous terrain and I’m learning to pace myself. To be clear- I’m doing all right, and I’m glad to be able to have the opportunity to be with her- yet it also is a process that involves a sense of grief and loss. My father died suddenly, leaving only an intense sense of loss. Having the chance to process this loss in more manageable ways is a bit long and arduous, but feels more fully realized. It is what it is and it’s a process of learning to accept where things are at- the wild highs and lows are tough- but the hard stuff is powerful medicine for the soul.
The thinker. Yesterday my sister spent several hours with my mom when she was quite agitated. In fact the aide who was with her took his leave because he has bad tinnitus and her yelling was hurting his ears (I hear he has been great with my mom so this is not a complaint but instead an observation that it was difficult). By the time I arrived around 4 my sister had left and my mom was in the dining area with the woman who coordinates the aides. She was calmer because the nurse had given her medication to address pain she had in her foot due to a fall. We have tried to avoid medication as much as possible because it affects cognitive functioning. However when the distress is high it feels like the only reasonable option when present attention doesn’t bring respite. As the medicine kicked in exhaustion took over. It took some effort, and help from a more experienced nurse, but we got her into bed. I was only there for an hour and I didn’t get to communicate with her much. Her feistiness was still there though because when I arrived I asked how she felt and she gave me the finger.. with a wry smile.
Today was wildly better than the last few. A little “this land is our land” Yankees version – the nurse thinks that pain in her foot was driving some of the problems the last few days.
The roller coaster has been largely headed down this week. On Wed I caught a couple of hours of more connectedness, but the days have been largely oriented around distress. While we walked for a great distance a week ago Friday And had a lot of singing and talking, this week saw almost no walking or coherent talking. Yesterday, when I arrived my mother was wildly frustrated because she couldn’t button her shirt. I left the room because I didn’t feel like I could help. It felt like the tantrum of a three year old who wants autonomy but doesn’t have the skills to be autonomous. Eventually I went back in to help the aide and we got her dressed. Thankfully she ate quite a bit which gave me more hope. Today when I arrived my mom was in bed and agitated. She was listening to Johnny Cash that her friend Judy was playing. Judy was a bit distressed that my mom had not recognized her when she arrived. I took mom’s hand and she held it tightly as she listened though she did not open her eyes. Soon she was asleep. I walked Judy to her car. On the way out I got some powerful uplifting advice from a nursing assistant Denise. I was feeling pessimistic (what I thought of as realistic) but She reminded me that there are ups and downs. When I got back upstairs mom was awake but a little calmer. My daughter Harper called so I put her on. When she said hello my mom said, “what monkeys?” When Harper said, “I love you Grandma,” she replied,”I love you too Harper.” It was the first coherent thing she’d said in a while and sparked some joy. We got her in the wheel chair and I fed her a good amount of dinner and a protein drink. She was in a little distress outside, but the waterfall seems to calm her a great deal. I go out of town for a week tomorrow. I’m hoping that the roller coaster heads back up hill while I’m gone. Thankfully, my family is still here and the caregivers are very good. The most difficult part of this journey is that my mother has always had a deep fear of being infirm and now here she is, infirm. The situation is exacerbated by her frustration, so all we can do is try to support her. It doesn’t always feel effective in the moment but it clearly helps.
Yesterday was another big travel day- The last thing I posted was my landing in Tel Aviv. Well, getting out of the cab at my hotel my phone fell in the cab. Unfortunately it was right at the start of Shabbat so I won’t even begin to be able to try to get it back until tomorrow- though I probably will be able to since the driver ostensibly went straight home. So I wasn’t able to take any pictures last night or this morning. Today we had a pretty incredible screening of All The Rage in Tel Aviv with Nir Brosh and Doc Tovah. It was a pretty packed house that got the benefit of Nir’s talk before the screening. This afternoon Tovah took me to the sea at Cesearea and I grabbed her camera to make some images there. The water was clear and rough and I had my goggles so I was able to scan the scan floor for rocks. As I did I thought about my mom. When she was doing a little better we would go out to the fountain at Carol Woods and she would look through gravel and river stones. There are bags of them in her room. I was collecting these rocks for her- hoping I get to give them to her. I felt deeply connected. It was pretty intense to watch the movie today as she plays a significant role in it. Two more screenings and then I head home. (update: phone is on its way to me for 400 shekels. about 120 bucks- everything has a price I guess….)
Today in Svat (the seat of Kabbalah studies in Israel) I had another moment of connection with my mom. In July when I visited her at Carol Woods I would gorge on the figs in the garden. While walking today we found a tree bearing delicious fruit
Yesterday I woke up at 4am in Israel. I had plans to go to Jerusalem with my new friend Oriya. The previous day he had taken me to the holy city of jewish mysticism which had been a quietly psychedelic experience. That night my friend Doc Tovah had presented All The Rage and it was an intense night. When I woke I saw a note from my wife letting me know I should come home a day early because my mother had stopped drinking and might not make it to my scheduled return on Tuesday. This didn’t surprise me as I had been stating it all week, and I knew I had to go. My brother Adam quickly rearranged my flights and Oriya took me to the airport. 15 hours later I landed in Newark and mildly rushed to make my connecting flight to Raleigh. That flight was difficult because I felt so exhausted that I was agitated in a deeply uncomfortable way. I had gotten a message that my mom was not declining so fast and all I wanted to do was sleep. However my wife Suki had brought our daughters so they could say goodbye. My cousin Ed had also arrived, so we went straight to mom. I was still tired but knew we had to. When we walked in it was clear that there was not much time left. My daughters said goodbye, and we called their cousins and my brother in law to say their goodbyes as well. My sister crawled into bed and held her tight and I held her hand. Her breathing was labored but steady. My cousin Daryn landed from California and I called her to let her say goodbye in case she did not arrive in time. My brother was with us on the phone. The nurse came in and gave her a small dose of morphine for her pain. It clearly helped and her breathing grew steadier, calmer, and slower. A little while later her breathing slowed more .. and more.. and then there was a small peaceful release of breath and life left her body, but her spirit was still very present for a long time. Daryn arrived and was able to be with her while she was still with us even if her breath was not. My father died in a deeply chaotic way, leaving my mother with a profound sense of loss. However, while these past few months have been difficult they have been transformative and healing, and she left us with a great sense
I’ve spent a lot of time at Carol Woods over the last few months. Every week or so I saw a new memorial notice. Today was the first time I saw my mom’s. I went to clean out her room but I only did a little. I talked to a few caregivers and just sat in the room for a few minutes. Today the exhaustion started to hit me.
The older I get the more I have come to embrace the idea that very few things in this life are purely coincidental. Today is the 22nd anniversary of my marriage to Suki Hawley, it comes 4 days after my mother died on my sister Dana Galinsky-Malaguti’s birthday of 9/9. It’s Friday the 13th. Yesterday was my brother Adam Galinsky’s 4th anniversary of his marriage to Jennifer Olayon.
Last Saturday I watched the end of All The Rage – the wedding scene. In it my mother sings “The more we get together” with Adam,Jenn, and Jenn’s mom. I held it together but I also felt a powerful sense of loss. Tonight we are gathering at our house (pot luck so bring something) to celebrate my mom, our anniversaries and the innate wisdom of the spirit world. My journey with my mother clarified the power of non resistance- accepting what is. Over the past week I have focused on this practice and things have unfolded as they should. This morning I woke knowing that I needed to smoke a brisket for the gathering. My dad was always the barbecue/smoking master. For Sukis birthday Spencer Pope helped me smoke a brisket. My mom was the real belle of that ball. She had a blast. A few days later she fell, sending her on her journey. There is some pain thinking about that connection but I’m accepting it and it feels right. The smell of smoke is making it’s way into the house and it feels oddly purifying in a ritualistic way. I see tonight as a celebration of all the pain and pleasure life offers and I feel at peace. I miss her but also feel so connected that she’ll never be truly gone.
I grabbed a random picture of suki and I but just realized it’s from our “honeymoon”- a weekend at the beach nearly a year after we married because we went to shoot a film days after our wedding – it was no honeymoon
I was so focused I barely took any pictures last night as we celebrated our mother, our anniversaries and my sisters birthday. It was a pot luck overflowing with food drink and love. Andrea sent over a bento box which was meaningful because my mother was such a fan and we had so many birthdays at Lantern -including her 80th in which we gathered people from near and far. Today we will have a viewing at Walkers funeral home and a memorial at the school of social work at 330. Come with your stories about Maeda