A Momentary Hiatus While I Take Care of Family.
Dad. Eight Years Ago.
We’ve discussed many things here on the Visual Science Lab blog but dealing with family and loss hves never been among them. I consider myself lucky; I’ve made it to sixty-two and have only lost two close friends, and until now, no one in my close family. There have been brushes with mortality but always followed by successful recoveries. I haven’t given enough thought to just how much a death in the family can affect the day to day routines and expectations of a self-employed person’s life —- until now.
It was the morning of Christmas Eve and family was getting ready to converge on my parent’s house to celebrate. My father has been dealing with dementia for years and, for the most part, my mother was his primary caregiver; keeper of the finances, scheduler of the doctors appointments for both of them, as well as the social director for them both. My sister and brother-in-law were in town and staying at my parent’s house.
Just after breakfast my mother, who has been dealing with C.O.P.D. for many years collapsed, unable to catch her breath. My sister called 911 and off to the hospital she and my mother went in an ambulance with lights flashing. Mother suffered cardiac arrest in the hospital but was revived after six minutes of CPR and other procedures. Once stabilized she was intubated and sent to the intensive care ward under sedation. My brother-in-law (the man is a blessing!) stayed at home with my father.
My little family was still in Austin. Our usual Christmas ritual was to have Christmas Eve dinner with a family we have known and loved for decades. We planned to ring in Christmas with nice wines and better company. One phone call from my sister and I had a bag packed and was heading south on highway I-35 as quickly as I safely could.
Ben and Belinda could handle anything that needed to be done in Austin.
When I got to the hospital my mother was sedated and unconscious and there was nothing for me to do there. My sister insisted on staying by her side so I headed to the family home to check on my father. He was agitated and having trouble understanding or processing what was happening. My older brother lives in San Antonio and he was at my parent’s house adding his help in caring for my father and sorting out our next steps. All the grandchildren were arriving in town, there were hams and tamales and holiday food in the refrigerators. None of that mattered anymore.
My mother got progressively worse. When she was taken off sedation all she wanted was to come home. She was inconsolable. We talked to the doctors who were pessimistic about her chances and they agreed to send her home with hospice care. She died quietly and without pain in her own bed yesterday at 12:52 pm.
Earlier in the day yesterday, Belinda, Ben and I had taken my father to a well regarded “Memory Care” facility for evaluation. If you are familiar with the term “memory care” in this context it’s basically an assisted care facility with emphasis on patients with memory loss, Alzheimer’s and dementia. We have a small apartment reserved but it won’t be ready until the end of this week —- and making the reservation will be the easiest part of the battle; dementia patients can have big mood swings and may go from liking a place to having paranoid delusions, anger and panic later in the same day.
My sister and her family have gone home to the east coast. She needs to take care of herself as she has a serious cancer battle to fight and is overdue for her chemotherapy. My brother and his wife are school teachers handling some student debt for their three children’s recent college work and they need to get back to work as well.
Many years ago my parents, in their wills, divided up the duties of their children as regards medical directives and estate management. The burden of medical decisions falls to my older brother (he lives in the same city as my parents) and he’s been wonderful in jumping into all kinds of situations with my parents and helping. He’s the one they call at 3 in the morning when my father has ended up on the floor and is unable to get back up. He’s the one they’ve called when the pipes froze or the electricity went out. Proximity ends up meaning “more responsibilities.”
My duty is to take over the financial end. To sort out to whom my parents owe money, from whom they receive money, which insurances need to be changed or renewed, to pay their bills and to be a good enough steward to make sure they don’t run out of money before they run out of life.
My mother kept things running, financially, and never shared information willingly, but in the last few years she allowed me to set up things like a durable power of attorney. Her filing methodology consisted of paying the bills as they came in and then putting the paperwork into shopping bags, trash bags, random desk drawers, under the sink, etc.
With my sister out of the picture and my brother heading back to work I am currently shouldering the 24-7 task of both caring for my father ( from first coffee and oatmeal to changing adult diapers and repeating (with a smile on my face) the same answer to the same question that he may have asked twenty or thirty times in the last hour. He is sometimes quite lucid and pleasant and as he wears down over the course of the day will sometimes become agitated and disoriented, insisting that “this is not my house! Take me to my real house!” and then deciding that I am a stranger coming to rob him. It’s a tough change from my (last week) previous life which mostly consisted of swimming on my own schedule, having coffee with friends and colleagues along with bouts of judicious napping.
Last night was a rough one. As his agitation grew it dawned on me that while I might be able to get him checked into the right facility but it might become a big battle or even require me to get legal help to keep him there. I woke up already tired this morning and started doing laundry and making an inventory of the food on hand and planning what I’d make for him to eat through the day. I need to get on the phone to make funeral arrangements for my mom and then I need to find and collect bills and get them paid.
I get that these are events and situations that nearly every child will face one day. Maybe it’s a warm-up, or training, for our own inevitable demise…
How does this relate to photography? Well, the stunning thing I am beginning to understand, now that my time is being swept away by a resilient and relentless tide, is that I must continue to work and be financially productive in order to get my own child through his last year of college, to keep putting money into my retirement accounts and to pay for the lifestyle my wife and I have created. I never realized that what I saw as “tons of unspecified free time” was really tons of flexible time during which I billed, wrote blogs, wrote books, stayed in touch with clients, maintained batteries and gear, practiced the new or hard parts of my craft, and so much more.
I have my first job of the new year booked for Friday the 5th. Pre-catastrophe I’d be planning out how I wanted to actually produce the video shoot and start gathering and testing the equipment. I’d have a plan. I’d have gotten a great night’s sleep and had a healthy breakfast. Now I’m frantic to line up paid caregivers and some of my parent’s younger friends to cover that day for me and then to have my brother come from his job as a school teacher to handle the “night shift.” I’ll be back in the car (instead of in the pool — newly reopened) heading back down to San Antonio to take the reins from my sibling to give him some respite.
I’m hoping this brutal schedule is as temporary as I imagine it might be but I know there will be the frantic phone calls from the senior living facility, the long weekends of digging through a chaotic melange of paper without a roadmap or logical guidance, and then the sheer drudgery of taking over their accounts with my paperwork in hand and being responsible for getting their taxes done, their bills paid, getting my dad to future doctor’s appointments, and so much more. I can’t shake the feeling that my life will never be the same.
The next job starts on the 10th. And then more jobs follow. The extra stress of not knowing what roadblocks or emergencies will arise and hamper my ability to commit to work schedules drives my anxiety. The “not knowing” if my dad will go willingly into memory care is a fear the size of a grizzly bear hugging my back.
Thankfully, my brother and sister are logical, kind and caring. We are all a united front. We all like each other and we don’t squabble. Thankfully, my wife is amazing and patient and logical and so very supportive. Thankfully, my son is incredibly responsible, helpful and compassionate (especially toward his father—-me). Another area of gratitude is that my parents leveraged their depression era fears of poverty into enough resources to last for any foreseeable needs my father may have.
My career as a photographer/film maker/blogger/writer? I have to believe that I’ll be back in the saddle by the end of the month. Shouldering some additional obligation but at least able to get back to the work.
Thanks for your patience and advice. It’s all welcome. Keep it coming; it makes me feel connected...