I did more clean-out of my dad’s stuff today. This afternoon was entitled “Make the Biro Garage Great Again”, otherwise known as reconfiguring where things were, starting to give some things away, and of course, starting to throw things out. Otherwise our cars will never fit in the garage again.
Right now, I am deconstructing much of what my brother, my family and I spent many years pulling together. Today: files easily thrown away. I am leaving the harder stuff for “Future Peter” to deal with. I’ll let him figure out what to do with the photo frames, stamp collections, postcards from friends long gone, old passports and plane tickets, and the presents my children constructed for him . Back in 2013 when he moved here, they made a beautiful little mirror for him. I sat with them that morning and picked the colors. What should I do with that?
With his Bank of America statements and copies of bills marked “Paid”, thank goodness, it is much easier. They go.
I remember the week that Rob and I spent in New Jersey in April of 2011 where I developed a system for him to get the bills paid. Rob focused on clearing stuff out of my parents’ house and I took all things financial. I sat with my father at what had been my mother’s desk. I demonstrated logging into online bill pay, keeping track of statements versus invoices, assuring cash in the account would cover the bills, identifying bills versus statements versus solicitations. I transferred everything onto credit cards that I could. It was a frantic and awful week — and that system worked for years.
This afternoon, I discarded the bulk of the product of it working for years.
There is more of this that awaits me. I also found a clock today that for the past 3 years sat on top of his bedside table. To find that exact clock took me a few tries. Then the one that I’d purchased broke after 6 months or so, but I didn’t realize for quite some time that the difficulty in setting the time and date was the clock, not me. Somewhere in the boxes in my garage is the other clock that he wanted atop the refrigerator. I remember sourcing that one too.
I wonder sometimes if I am cursed because the deconstruction reminds me of the construction. It is the same as a sandwich generation father; I remember the visits to Plaster Fun Time and the times Sophie and Lily worked all day to create artwork just for me. It makes me happy to have experienced that kind of unconditional love, and haunts me a little at the same time.
Creating those folders was my own version of unconditional love. I knew that I had to throw them out regardless. It is just the nature of things.
Before diving into this blog post, I wanted to step outside the blog, so to speak, and write about writing it. Very meta, I know.
My dad passed away about 4 weeks ago. Only now is it really starting to hit me. This makes sense if I step back, which is hard to do when you don’t really feel the ground beneath your feet in the first place. First of all, denial is one of the stages of grief, and true to the cliche, I have been in denial about my father passing away and the impact it’s going to have on me. I’ve also been somewhat in denial about the impact of having been a caregiver, and especially the intensity of last couple of months. There were days that the phone rang 20 times. In a way, you sort of have to be.
Second, truth be told, there is a part of me that wants to stop writing. Just be done grieving and processing and reach the end state, whatever that is going to be. It has to be better than this. As if declaring that I was done would make it so. I am a check the box person and sometimes I like to check the box even if something isn’t 100% complete. However, with processing trauma, it doesn’t work that way. Plus, I still have a few stories left to tell. If anything, they mean more now and I realize that I need to get them out.
Right now, I am in the phase of grieving called “dealing with the stuff”. It is different than when my mom died more than 6 years ago. Back then, my brother and I had to deal with both clearing out the clutter from her life and setting my father up to live his. I don’t have that problem this time. What I do have is all of my father’s things left in the world now in my garage. There is no distance. Every time the garage door opens, there is his scooter, his power lift chair, his desk, his walkers, his dining room table and chairs. Even our outdoor fridge has some of the beer that I used to keep in his old apartment.
But what really grabbed me recently was his robe. That stupid robe that he’s had since well before he moved to Massachusetts in 2013. One of the first things of his that I unpacked was his ugly purple suitcase; my father only had cheap luggage that came courtesy of casinos who in the 1990s gave cheap Made-in-China gifts to him and my mother in their roles as perpetually unlucky medium rollers. I had packed it for him when he checked into the rehab center. I stuffed in multiple pairs of pajamas, pants, shirts, handkerchiefs, his slippers, iPad and case, hearing aids and batteries, his headphones, reading and distance glasses, power supplies, and the framed letter he had received from the Commander of the US Navy Pacific fleet (a whole other blog post). And his robe.
So when I unpacked the robe, I flashed back instantly to how much it had said to me over the years. As a caregiver, you learn to look for signals. When he first arrived, he wore the robe constantly, even to his community’s dinners, which of course you are not supposed to do. I had to save him from that, and insist that he would wear clothes. Then he tried to wear the robe when I visited to prove his independence to me – so I would leave. I think I felt guilty at first and eventually learned not to. My father was a man with whom you had to set strict boundaries.
Over time, he stopped doing this. I would arrive on Sunday afternoons and he would be dressed, and showered, and shaved, and drowning in cologne to cover the smell that he knew his incontinence would create. After a while, I came to appreciate this gesture. For him, putting on a button-down shirt was torture, but he did it anyway. He would ask me if he looked all right. Those were the good days.
Then there would be days when I would arrive and he’d be wearing the robe, and immediately I would know that he wasn’t feeling well. I just knew. If you have cared for an elderly parent before, you know the importance of non-verbal tells, and you know not to give them away.
There were the days that he would wear clothes, and the robe, because it was cold in his apartment. So I’d quietly re-adjust the thermostat.
There were the days that because he wasn’t wearing the robe, I could tell that he’d worn it most of the week by the smell it gave off. My dad would have draped it over the chairs around the kitchen table because hanging it up was too difficult for him. Then I would put it in the laundry when he wasn’t looking and hope he wouldn’t pull it back out.
There was the day in late June, somehow only two months, when I checked him into the hospital. That was the day when everything changed, or at least where the change became obvious to me. I arrived to his apartment to find him in his desk chair wearing that robe and pajamas, with two caregivers on either side of him. They were at their wits’ end. He had refused showers and bathing for days. He had been wearing the same soiled briefs for 3 days. My father was unrecognizable, unshaven, with a dazed look and a barely coherent understanding of where he was and what was happening. His robe told that story too.
There were the final days in his assisted living apartment, which just never worked. I would put him to bed in that robe at 10am because my 9am visits would be over by then – he was just too tired. Then I would cover him with the new cover sheets that fit his new single hospital bed. That never really worked either.
I extracted these memories from just pulling the robe out of that awful purple suitcase. All of this flashed through my mind in about a half second. Maybe less as time loses meaning when one in this state. Like I said, I still have a lot of grieving and work to do.
Back to the meta — I also have a lot of stories left to write. Mostly I am writing that for me. Also I am continuing to write for the many people – which in my world, is like 20 – I’ve spoken to over the past month who have been caregivers, or are caregivers, or know they will be someday. So as with the robe, I am going to keep writing about being a sandwich generation father and son for a while. I hope there are still a few readers left who will follow along.
Long ago, in my childhood home while sitting across from me at the same desk he now has in the apartment I need to empty, my father told me the story of the start of his consulting business. He started confident. While employed in the mid 1960’s at Jerrold, engineers at many of the companies with whom he interacted would ask him if he’d be willing to consult for them. Jerrold was a top manufacturer of antenna equipment and my father a well-regarded engineer. In time, he grew to believe that these sincere offers proved that launching his one-man show would prompt an avalanche of business.
Once he left Jerrold – involuntarily – he decided to start out on his own. He named the company Biro Associates, dutifully printed up business cards and stationery, and phoned many of these people back to announce that he was ready to work with them. Suddenly the fast offers evaporated.
This is where he learned, the hard way, about the difference between the role and the man. That is, that people were talking to the engineer employed at Jerrold, and not actually to Steve Biro. He was merely the person occupying the job. Once he was on his own, things were different.
I know the feeling.
For a little while longer, I am still a little bit Sandwiched Man. Among the tasks related to my father that I still own is clearing out is his apartment. I am traveling, however, back with my family in Italy after flying back to Boston last week for the funeral after having been in Europe for only about 48 hours. What I need now is some actual help from one of the many people who said “if there’s anything you need, just ask.”
I am biased in this regard as the father of twins. When Sophie and Lily were infants, we fed them every 3 hours. 10am, 1pm, 4pm, 7pm, 10pm, 1am, 4am. Needless to say, we were perpetually exhausted and in a haze. But they were our only children, so we didn’t know any better.
We also didn’t know any better than to politely decline offers to help. We accepted all of them. Definitely don’t ask if there is “anything” they need. Because I can tell you: they need the laundry done. And they will ask, and mean it.
Fast forward to last week and an offer from a social worker if there was anything we needed, and in particular to help move things out of my father’s apartment while we were gone. It felt too good to be true, so Rob and I decided to test the proposition. We left her very detailed instructions via email on what should go where. The desk, the scooter and the power recliner to my home in Wellesley. The cable box back to Comcast if she had time, otherwise back to my house. Everything else to Goodwill. We sent photos, garage codes, and anything else she might need.
As the hours ticked by, we knew how this would end. Sure enough, an email from her appeared. My apologies, she said. I didn’t mean I would actually help you myself. I meant more that I could give you a contact with movers we know if you wanted. Would you still like that?
The moral of the story for caregivers and parents is this: although you will find many people who can help, you are responsible. Even if Nova and I had spent small fortune to hire night nurses for our kids for the 10pm, 1am and 4am’s, we would have had to manage them and handle emergencies anyway. For my father, I made difficult decisions many times that no one was going to make for me. It was lonely. And now that I am not in a position to steer caregiver dollars toward my father, I cannot help but notice that while offers of help are still abundant, actual help is more scarce.
That makes sense though. In the eyes of those I’ve worked with for some time now, I’m no longer caregiver-with-a-budget Peter Biro. I’m simply Peter Biro. A different person altogether.
Again, this doesn’t particularly surprise or disappoint me. I sort of expected it. I never forgot that lesson sitting at my dad’s desk from all of those years ago. My father got a lot wrong, but on this one, he knew.
I wanted to post something that my daughter Sophie wrote for my dad. Being a Sandwich Generation father and son has meant that my kids got to know my father, and he got to know them. That was a gift, especially on days when I couldn’t take it anymore and they could step in and take over. See below for an example of a situation I am talking about.
Editor’s Note: Sophie is 14, and full of life, wry offbeat humor and positive energy. She built a pretty special bond with him and visited him with me often.
I was extremely fortunate to spend 14 years with my grandfather (or “Apu”, as I called him), and there were two moments in my time with him that I will cherish forever.
This past November, I visited him in rehab. He had broken his hip (I would say more, but I’m sure you all already know the story). I remembered my dad talk about the constant arguments that Apu had with the nurses. He was refusing to start physical therapy, and only wanted to stay in bed and watch T.V. while nurses came and gave him his meals (which, without the broken hip, sounded like a pretty good life to me!!!). I told him that I wanted to see him get in his wheelchair and eat in the dining room. As soon as I said this, without any hesitation, he called the nurses in, was lifted into his wheelchair with a cool electric powered thing, and sat down with me at a table as he ate his dinner.
The second story takes place a few months ago. He asked me what I wanted for my birthday, and I told him that I was going to get a new saxophone (I know, what a “band nerd”). He always loved music. He, without a thought, offered to pay for every penny. I could see how excited he was about this – which is saying a lot, because it was always hard to figure out what he was feeling. I still remember playing for him, a few weeks before he passed, watching as he smiled at me. Two weeks ago, I got my new saxophone, and I sent him a picture through email (of course) and he told me that he was very proud of everything I was doing with music. I’ve starred that email forever.
What really stands out to me, in both of these stories, is that you can see that he really cared, that he really loved his family and would do anything for them. I saw this in every chocolate box he gave me, every time he said “Sophie” and raised his arms for a hug as he saw me, in every photo he showed me, in every gift he gave, etc. I could go on and on. I wish I could of had more time to make more memories with Apu, but I know that I will never forget the ones I do have.
On Monday afternoon I was in Rome, crossing a bridge near the Piazza Cavour with Sophie to get lunch, and my phone rang. When I saw that it was Metrowest Hospital calling at about the time rounds start, I ignored the call. I wanted to hear from my brother instead that my father had passed away.
Even though we knew this moment would come, it still surprised me. Death came for my father many times and each time he turned it away. Of his forced labor battalion of 200 men from 1944, he was the last one left. He survived fleeing Hungary in 1956. In his 70’s, he beat colon cancer. Then 4 years ago, he fought off a deadly C-Diff infection. It was the first of a few times I would summon Robbie to board a plane, right now. My father was feverish, weak, on a collision course with major stomach surgery and 50/50 odds of surviving.
But there was no surgery. He beat that too. A week later he was cleared to eat again. I spread strawberry jam on toast, and fed it to him before they discharged him. I took a bite too. It was the best toast I had ever had. I smuggled in some Diet Coke for him to help wash it down. Always the Diet Coke.
The gift this gave me was 4 years of having him close by, and a second chance to know my father.
He taught me a lot when I was young. To love travel, any travel. We would drive the station wagon to no-frills vacations in destinations stapled onto one of his consulting projects in far-flung small towns: Gadsden, Alabama, Utica, New York, Houma, Louisiana. He taught me to play tennis by hitting balls with me in the street in front of our house. How to play ping-pong. I could never beat him until I finally developed a forehand down the line. It’s still my best shot. How to play chess. How to curse like a Hungarian with my idioms frozen in 1956. How to frame and take good pictures. How to ride a bike. How to drive. Just last week I backed out of a friend’s treacherous driveway flawlessly using his “only use the mirrors” technique. He taught me how to tip. This is because in the Early 1980’s Low-End Family Dining Hall of Fame, he is enshrined as Worst Tipper. I swore I would never do that.
I saw him weep every year at Yom Kippur when he thought of his father. And I knew his history. But I didn’t really know him. He didn’t tell me much about himself.
Let me say this: he was difficult. His head was filled with the ideas from his medium-sized town in Hungary in the 1930’s. He was stubborn. Sometimes he and I would have yelling matches about hygiene where I swore I could hear echoes of my mother calling him “primitive”. To him, everyone else – everyone — was stupid. I think the word he used most in his life was “idiot”.
He could be very selfish. I cared for him in his decline, where he relied on me so much and knew it. I can imagine how forceful and demanding he must have been for my mother when he was in his prime. I think I understand her a lot better now too.
Over our years together though, he softened. A short while after he moved to Massachusetts, we settled into a routine where I would come over on Sundays, handle a few things, and then sit with him at his desk, his big ugly awful 1960’s desk, and talk.
He loved talking to me. He told me so. Most of my life, I was certain that I had been a disappointment – an idiot – and suddenly all he really wanted was to sit with me, and talk.
He told me how much he missed my mother. One time he confessed that he would die just for one more chance to lay in bed and see her next to him. How he regretted being hard on her. How beautiful she looked on their wedding day. I had scanned all of his old pictures and slides, so he showed me and narrated many of them, including their honeymoon in Rome, and Lugano, and Venice.
He told me about his years living in Stockholm, and Cleveland, and Princeton, and how he came home after being fired for the zillionth time and announced that he was starting his own business. He taught me about entrepreneurship and hard work too.
2 years ago, I had told him I had been fired from a job I had been proud to get. He smiled, and responded that it was in the finest Biro family tradition.
He told me to send him pictures anytime I went away. I took a picture in Rome on Tuesday thinking about his honeymoon there, and how proud he would have been of how I had framed the shot.
He told me how much he looked forward to seeing Jodie and Megan every day on Skype, and how much he loved them. He would send me iPad screen shots of their calls, and tell me how proud he was of how they were growing up.
Sometimes I’d bring Five Guys for him for lunch – a single burger with just mustard – and he made sure to tell me every time how much he liked it.
He told me that much to his initial surprise, he was happy in his new home. He had made a life for himself and it was simple and it was good. He pioneered the Classical Music hour and used his iPad to email me articles he’d read from newspapers around the world.
He loosened up on money. He ordered room service every day, because the $6 delivery charge bought him the freedom to eat whenever he wanted. He procured a powered recliner from which he watched Megyn Kelly and too much Fox News on the big screen TV he also let himself buy. He treated my family to dinners at Legal Seafood.
In January, we watched Federer and Nadal in the Australian Open Final, just like we had watched Borg and McEnroe when I was a boy. I sat on his couch and had a beer – he insisted that I stock the fridge for myself because he wanted me to enjoy coming over. I sat with my father and it was simple and it was good.
He had a never-ending source of chocolate for Lily and Sophie. He always wanted to know what they were doing and watched every swim, dance, and home video I sent him.
He finally let me sign his credit card slips at Legal’s because he figured out that he didn’t know how to tip.
And he gave frequent presents to everyone who helped him. I know because it was my job to get the cash and the chocolate. Everything was my job. Now that he is gone, I will have to learn to visit CVS without buying extra Diet Coke, and to re-program my Sundays, and not to look for his political emails, and figure out where to put that big awful desk.
The great project of my life for the last 4 years has been being a Sandwich Generation father and son, and working with my brother and our families and an army of compassionate caregivers to give my father the illusion that he was truly independent. It was an amazing magic trick. And it worked.
He survived to see my daughters become B’Not Mitzvah last June. He wasn’t strong enough anymore to walk to the Torah so we brought the Torah to him. My brother and I held him up standing while he recited the blessings.
He survived hip replacement surgery last October. Of course he did. Then while recovering he determined that everyone at the rehab center was stupid. Of course he did.
He really only lost his independence about 6 weeks ago. These 6 weeks were very difficult for him. He was sick, and finally his body gave out. Plus, as he told me in one of our last real conversations, Megyn Kelly had left Fox News and her new show on NBC was terrible.
On Monday afternoon when Rob called to let me know that my Apu had died, I with was Sophie in a sandwich shop in Rome. I cried, hard. Then I pulled myself together and bought a Diet Coke. He would have appreciated that moment. He loved his children and grandchildren, and he loved Rome, and he loved his Diet Coke. And sitting with me at his desk on a Sunday afternoon, he would have told me.
Yesterday I juggled a thousand things at work, made dinner, stayed up very late working on something for a client, dealt with huge commute delays thanks to Mass Pike construction in Boston that somehow is affecting every road in the area, dealt with a subscription problem, ran one of my kids back from swim practice, and dodged about 6 telemarketer calls on my cellphone.
In other words, a normal day. It was wonderful.
A long time ago I wrote a post called Invite the Cow In. The short version is that if you think your house is too small, let the cow live there for a while. When she leaves, your house will seem spacious again. I suspect every faith has a version of this story.
In my house, the cow is definitely in right now.
Yesterday was the kind of day that in the past would have caused me to fall onto my pillow, exhausted. Maybe it will again in the future. But I must say, having a normal Monday was pretty spectacular.
My father-in-law introduced me recently to the Freudian concept of the id, ego, and superego. If you are ready to skip the rest of this post already, I don’t blame you. I didn’t want to get into these concepts either. But based on my dad’s current state, and what just happened, they are really top of mind.
For psych majors out there, a word of warning: I am going to butcher this. Here goes anyway.
When we are born, we are all “id”. It’s all desire. Hunger, thirst, sleep, salt, touch. Later in life, this also includes sex. These are instinctive needs that underlie our will to live to ability to reproduce. In Judaism, this is “yetzer hara”, the evil impulse. It’s not evil per se; it’s what drives us to survive and without it, we would die. They are inseparable from us, part of the whole us.
But if human beings we all only followed these impulses, we would collapse into anarchy. So we have society, and society has rules. Different societies have different rules but many are similar. Thou shalt not kill, for example, is on one extreme. Don’t wear white after Labor Day, I would argue, is on the other. Now that I live in Wellesley, I get that not everyone would find these to be such polar opposites. These ideas are implanted in the “superego”, which is aware of society’s customs and norms.
Between what society says and what desire demands – desire never asks, it only demands – is the “ego”. The ego is the regulating force that understands when it’s time for sex and how to ask for it. It is the director of the play that decides which actors to bring on stage. Sometimes thirst is front and center and all else must cease while it has its moment in the spotlight. It is the ego that calls it onto the stage, lets it speak its lines, and then moves it off to the side. It is “yetzer hatov”, the good impulse, the part that understands that long-term love and commitment and good deeds also benefit the person demonstrating them.
It is said that as we age, we regress to what we were like when we were born. Independence starts at zero, then increases, then decreases again. So it is with my father right now. He is turning into all id, all an unquenchable and bottomless desire to get every need met at the instant he feels it. This is why he calls 20 times a day. It is why he refuses his medication; he is convinced that the people dispensing it to him are trying to kill him and his survival instinct is kicking in. Nowadays why when I don’t give him what he thinks he wants, exactly when he thinks he wants it, he will do or say anything to get it.
Hence the real purpose for this blog post. It is not about psychology. It is about the terrible things he says to me, how much I wish they didn’t hurt, and what I plan to do about it.
My father ordered an electric wheelchair on Amazon. Everyone told him not to: doctors, nurses, my brother and me, the director of the community where he lives, everyone. It was unanimous. He won’t be allowed to ride it around the halls anyway. He’s not safe to operate an electrical means of conveyance because he tends to fall asleep and doesn’t have the judgment to know whether he’s going too fast. But for him, ability to move around has reached “id” levels. So when it arrived, I asked the staff at Brookdale to send it back.
So he launched into a series of diatribes, including a long one about how I have been doing nothing but trying to steal from him. I had made a bank transfer into one of his accounts from another so that I could pay his bills, which it turns out was incontrovertible proof that I was siphoning off his money. I have made this same kind of transfer a thousand times. Didn’t matter.
Then he insisted that he has an attorney visiting tomorrow to take away my brother’s and my proxy powers. I don’t particularly enjoy making decisions like whether or not he should get an intubation tube if he has trouble breathing. Who would? But I am doing the best I can, and so is my brother.
This after a lovely morning where I organized for him with his hospice group to have a hot shower. I don’t know how much time he has left, and before it is too late, I wanted him to have the sensation of warm water rolling down his body. They needed me at one point so I helped lift him slowly while the nurses cleaned him off. I held him under his right arm and supported him and watched the beads of water run down his back.
And this after I had convinced myself that I could work from his apartment during the week and had rearranged his desk so that I could be there as often as possible. This way, when he woke up from his frequent naps, he would see me and know that he wasn’t alone.
Later I connected with the Executive Director, who is a prince of a man and has been so kind and supportive throughout the past difficult weeks. I wanted to let him know that I was concerned, and also that this same lawyer somehow had spoken with my father about suing their assisted living community. Apparently this scam is common and some unscrupulous attorneys reach out and find the vulnerable elderly to extract whatever legal fees they can before the end comes.
He could see how upset I was from how I was shaking. He has seen this movie and starred in it himself as the son of someone deteriorating into an angry id and not much more. He told me that it wasn’t really my father talking. I don’t know. I want to believe that. I want to believe that this is just id, not ego, not the man who most likely brought me into the world. I never thought I would write that sentence but I suppose it’s possible that he’s not really my father.
But it is also true that this version of the man isn’t really my father anyway. That man disappeared sometime in May or June and I never saw it happen. I fought hard to keep the universe from taking him from me, and while I wasn’t looking, it went ahead and reclaimed him anyway.
My time pondering this is almost done now; I convinced a relative to come visit him and she is on her way as I type. I realize in a moment of calm that It’s only his id and not the rest of him. I shouldn’t care about winning arguments with his id. Ids will fight to the death because they know nothing else. So really, the time for arguments is over. The time for winning is over. Now it is about honoring the man who was by dealing firmly but kindly with the man who still is.
(deleted this by mistake – sorry for the repeat)…
Back in the days of visits to my father’s old apartment, we would have a pre-agreed upon time when I’d be arriving. Then circumstances would come up. I’d get Sandwiched Man type of responsibilities, or Route 9 would back up, or once in a while, I’d be attending something fun early on a Sunday afternoon and lose track of time. A few times I even got lost in a book. So instead of walking through my dad’s door at 2pm, it might be 2:30. Normally I am a pretty punctual person but Sundays would be particularly challenging for some reason. It happens.
Eventually he got used to this, even generous about it. It’s not like he had other pressing engagements and at one point, a thousand years ago now, he was just happy to see me and spend some time together. Because he didn’t have obligations anymore, he would refer to himself as the “time millionaire”, a reference to my once having had millions in stock options back in Silicon Valley in 1999 and 2000. That ended for me as it did for most people back then, so for years, I was his “ex-millionaire” son. I didn’t think it was as funny as he did. Such was the nature of many of his jokes.
Before that transition though, in his early years of being here, he would really lay into me for being even ten minutes late. He would tell me I was unreliable, for starters. I couldn’t be counted on. I won’t continue with the adjectives and invectives thrown my way. Suffice it to say that they got to a point where even I, who until recently didn’t realize the need for shields with respect to him, had to tell him that he couldn’t talk to me that way. Maybe that is a superpower I should have developed more quickly.
The irony is that now he has no sense of time whatsoever. He calls so often during the workday that I’ve had to block his number from hitting my cellphone directly; I always get the message quickly, but after multiple days with over 20 phone calls per day, sometimes 5 calls in under 10 minutes, I had to put those shields up too. Because he is sleeping so much, day and night have lost meaning for him. He called this morning at 4:30am, a frequent occurrence.
Time has changed for me too. People frequently use the expression “taking it one day at a time”. I know what this means now. I have to pace myself differently, slow things down, remember to conserve energy.
If you’ve been a caregiver, you know that conserving energy actually burns a lot of energy. Usually by the evenings, I am pretty tired from trying hard not to get tired.
Also, I am remembering the days I spent sitting with him at his desk instead of crouched over his bed. In those days, the biggest problem we’d have is that the YouTube classical music playlists that he created on his iPad hadn’t transferred correctly to his AppleTV. He would insist that I stock his refrigerator with beer so that I could have one while I sat with him for an hour or more and tell each other stories. Now he gets winded after less than 10 minutes.
I know that was only 2 months ago. But it feels like 4 years. I don’t know yet how to characterize the 4 years that we’ve been together. Ask me 4 years from now, I guess.
The last time shift is that our time together is finite now. I always knew it was true and never thought about this much before. It didn’t seem to matter. Now it pops into my head constantly, and I find myself trying to suppress it on most occasions. Too much to do and for all I know, it could be months. My father has cheated death so many times before that it’s hard to imagine that he won’t hold him off longer now than the doctors reasonably think he could. But sometimes I let myself drift a bit, and into thinking about what time must be like for him now, and into how to make to the most of it.
Recently after some of the tougher visits with my father, I’ve made a detour to my favorite go-to, which is Jack’s Abby in Framingham. It’s a beer hall with relentlessly knowledgeable serving staff, a huge and newly outfitted brewery, better-than-passable bar food, and most importantly, a long bar with plenty of stools. Yesterday my family was away in Maine, so rather than come back to an empty house, I detoured there instead.
Jack’s Abby mostly makes lagers; I discovered them about 3 years ago and they’ve been my go-to beer pretty much ever since. They moved to a downtown Framingham location about 2 years ago from a more remote outpost, and although I’d been there a few times since they opened, I didn’t realize how close they were to my dad’s place. I actually re-discovered them during my dad’s most recent hospital stay at Metrowest hospital not far away. I didn’t realize how not far away it was until I looked up how to get there on Google Maps, only to discover that the brew hall was 0.2 miles away. Less than 1,000 feet actually. How did I not realize that before?
Anyway, I arrived and the place was mobbed. There were no seats at the bar. Then I looked again and noticed a lone barstool jammed in a corner between 2 couples. Ordinarily I am not that guy. Nowadays I am feeling less constrained by those kinds of social norms – so I went for it. I jammed into the corner and asked them all to move so that I could have the spot. One couple thought it was pretty funny. The other displayed a reaction that can be described best as more typical in Massachusetts than in states where people have a sense of humor. Just to tweak them further, I took a selfie.
I sat for about a half hour and had 2 half pints, one of the spicier version of their dark lager, and one of the fruitier version of their hoppy lager. They were good – the beers there usually are, even the ones that are experiments. But really what I had was time alone without actually having to be alone. Anonymity in crowds is one of my go-to comforts. I paid $20 for those 2 drinks and a salad; what that $20 really bought me was a transition from being by my father’s bedside to pivoting back to my regular environment.
I am interested in brewing so I talked to the eager bartenders, who never seem to be the same people twice, about what’s coming next and why certain things get brewed at certain times of year and what day parts are busy and whether those 2 people across the bar are on as awkward of a first date as it seemed and if the Sirius station is going to play any song by Tears for Fears, why “Head Over Heels?”. Really I just wanted to talk about anything besides hospice or the paperwork I had recently signed that no child ever wants to sign, but someday might be forced to.
Jack’s Abby has been very good to me in recent weeks – yes, the beer is good, but the corner barstool is especially good. I have my beer and a bite, let the din wash over my fears and return me to regular life, and then am on my way.
I know it has been a while since I wrote — more on that later. For now, I wanted to relay a conversation I had with my father today.
Quick note to get everyone up to speed on plot: about 6 weeks ago, my dad started acting in a way that I most charitably could describe as erratic. He started forgetting to take medication, which for him is very unusual. Or it was anyway. He started being borderline abusive to the team helping to take care of him. And he started arguing medical results with his doctor. In early June, I was in Atlanta on a work trip and I’d heard that he had refused hospitalization after his physician had found his kidney numbers plummeting. At the time I understood his viewpoint because once in the hospital system in America, all bets are off, and really, what could do they do anyway? More tests?
Since then, here is the sequence: another doctor appointment, a week-long hospitalization over July 4th for severe edema and CHF, my father refusing enough tests that they booted him from the hospital, a terminal diagnosis with a one-month time frame, a last-minute scramble to move his apartment to assisted living, hospice sign-up, a visit from my brother, firing the original VNA and replacing them with another that actually returns my phone calls, and most of all, a highly diminished quality of life. Really, the bottom fell out.
On that last point: my dad until 6 weeks ago could shuffle around his place and get himself to his favorite spots. The desk where his iPad lived. His reclining motorized chair. The stove which he never lit but on which he ate everything. His refrigerator which housed his Diet Coke. The living room table where occasionally he would take a meal. His scooter which he would use once a week to get his mail and terrorize the other residents. The bed that he and my mother probably bought in Cleveland in the early 1960’s where he slept every night.
The picture I’ve shown is his old living room — now empty.
That world is over now. Even that bed has about 2 more days to go before it’s replaced with a hospital bed because he can’t get out of the one he has and it’s too hard for the staff to reach down to where he normally is. He can barely move. He can see the Diet Coke on the nightstand, but can’t quite reach it. It is Tantalus, come to life.
Today I sat with him on that bed, maybe for the last time. I used to sit with him at his desk, but now usually he is half asleep in a wheelchair or in bed. Recently he has been having nightmares where my mother visits him and tells him about everything he has done wrong. How he was too cheap to visit his grandchildren in California, how his English should be better, how he should have been a better husband and father. Then he looked up at me with moist eyes — and I mean up, because he was laying down and I was sitting – and he told me that he was trying to be a good boy.
In a way this broke my heart. My dad was known for many things as a father but reassurance was not among them. I can see him turning the voice that he employed on my brother and me on himself and unlike the two of us, he doesn’t have well-developed defenses. Boys who grew up 80 years ago did not develop those kinds of defenses against their fathers the way that those of us reared in the Reagan era did. It also broke my heart a bit because there is some part of him that knows that although he has cheated death so many times — so many times — the end is coming soon.
But then, I know that already. Soon might be a week, or a month, or 3 months. That part I am almost ready for.
So over the past few weeks, it has made me think about the last 4 years and all the things I did right, and all the things I did wrong. I made a lot of mistakes. And yet — I know I did the best I could. There is really nothing more I could have done while still being the Sandwiched Man and keeping the rest of the plates spinning. I had a lot of plates going, still do.
I think that is true for many of us. My father wasn’t raised to be the kind of father that I try to be. Being a husband and father and son and friend and volunteer and breadwinner and also being oneself is hard. Being Sandwiched is hard. It might be the hardest thing.
Hospice can help him with the physical symptoms that are about to come his way. Kidney failure is kind – it’s a sleepy end. Already it has begun to lay its fingers on him; the insomnia that he complained about 6 weeks ago was actually narcolepsy caused during the day that rising creatinine levels. It’s sleep, and it’s natural, and nightmares aside, it is peaceful. Congestive heart failure is less kind. I can’t solve that.
What I tried to do and hope I can do is help ease his guilt, and keep telling him what I did today. Which was not about being a “good boy”. I don’t even know what that means, and I know for myself now that striving for it implies that there is an alternative to avoid. It’s simple: you did the best you could. The best you could. That’s enough.
It’s also the best I can do. I’m OK with this for myself now regardless of what comes next, so hope I can get this to be OK for him too.