If you’ve been to Whole Foods, you know the virtuous-looking probably-made-from-recycled-material trays for the hot food bar. They come in two sizes: normal, of which there aren’t many, and giant, which is the size most of them are. If you fill them with items from the buffet — although Whole Foods is too snooty to call it that — you would pay about $12 or $18 respectively. They are brown and feel like corrugated paper, and they stick together.
I was fueling up at lunch today when I saw an old man with a cane trying to pull a tray from the “giant” stack. These things are thick and heavy and packed together tightly, so he was struggling. I put down my lunch and went over to help him out. Just a small thing that one does when one sees someone having trouble. Took me 10 seconds. He was grateful, and then I went to stand in line to check out.
Then I almost started to cry.
I used to do 100 things like that a day for my father on the weekends and after a while, I took them for granted. Aside from task lists that I’ve mentioned before, I would perform small acts that were nothing for me and probably saved him so much time and many reminders of his failing abilities. Picking something up off the floor he had just dropped, opening a soda bottle, adjusting the thermostat that I’m sure he couldn’t read anymore. The feeling at Whole Foods brought me back instantly to standing in his old apartment again, as if I’d never left. As if he’d never left.
Recently I have been feeling more myself, but the thing about losing someone is that you really don’t know when something is going to creep up on you like that. Over time, it happens less and less. I guess I am still a long way off.
Recovering is a strange process. You don’t really ever get back to the place you were, and for wherever it is you are going, it is not a straight line. It is hard to know how you’re doing too. I suppose it’s when small things like helping someone out at Whole Foods make you remember, and most of the time, you smile.
In dealing with my father’s things, I’ve found that he has 2 left of value. First is his power recliner, which can get its occupant to a standing position with the touch of a button. The second is his electric scooter. That item was particularly expensive and not hassle-free; when my dad broke his hip in October and spent nearly 2 months away from home, its batteries discharged. Figuring out that was the issue, procuring new batteries and then recycling the old ones was one of those caregivers tasks that (a) doesn’t seem it should take a lot of time, but does, (b) doesn’t feel like caregiving but has to be done anyway and (c) is out of my comfort zone because I am not mechanically inclined. I have a decent sense for when to sell Apple stock, but not that.
I originally had tried to sell these items. It turns out to be harder that you would expect to sell working items in good condition to senior citizens. Maybe this is because Medicare is the competition? Anyway, I don’t really understand it. So I had to shift my mindset and instead decided that I should give these away. And once I decided on that, I hoped that I would find a good home.
I think I did.
The man who will be taking my father’s scooter and chair, the ones that brought him so much happiness, came to me via Jewish Family and Children’s Services. I had listed these items for sale on my Temple’s email list, and that made its way to one of the geriatric care managers who had helped me before. Karen is the one who guided me when my father was incontinent and too stubborn to admit it, which then meant he was about six inches from being evicted from his apartment community. This was two years ago and I had wiped that unpleasant incident from my memory. That’s a blessing in its own way.
His name is Eric (not actually, but let’s call him that). Eric is much younger than my father and had a stroke about two years ago, which left him paralyzed on one side and with many physical and emotional challenges. When people see him now, I’m sure this what they see. It’s like when my father used to be admitted to the hospital and become elderly-male-who-fell-and-probably-has-dementia-and-so-many-other-problems; he was a whole person too and it took special caregivers to see it.
But Eric is a whole person. His wife is amazing. His family loves him. And he is an entrepreneur like my father. He started a business that he worked in for decades. Even now he loves to get around his neighborhood despite the difficulties. Once upon a time he enjoyed a cold beer on occasion. My kind of guy. He works tirelessly in PT and OT to regain and maintain whatever strengths and abilities he can. He does not quit. My father’s kind of guy.
So, I am happy that these items which gave my father so much joy and a perception of increased independence are making their way to a fellow entrepreneur. He would have wanted another human being to have a chance to become more than the sum of his ailments. My father had many flaws, heaven knows — but appreciating what this chair and the scooter did for him was not among them. I suspect Eric, a fellow entrepreneur, is in the same boat.
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.
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.
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.
Some time ago, I mentioned that in the catalog of stuff in my dad’s apartment, I almost always keep beer in the refrigerator. Specifically, Smoke and Dagger black lager from Jack’s Abby brewery in Framingham. Sweet, smoky, not too heavy, drinkable if you need more than one – which as a caregiver, sometimes you go. This was back last August before my dad broke his hip, therefore keeping me away from his apartment for a few months.
So when he moved back home in December and I resumed regular visits in January, I resumed the habit until I ran out. I didn’t buy more – truth is, I felt guilty that my visits would seem like something that necessitated taking the edge off. I once had an aunt who was challenging to deal with, and I occasionally would buy her Absolut vodka with which she would then make cocktails for me during my dinner visits. I don’t even really like vodka but with her, it helped a lot. We all have relatives like this.
A few weeks ago, my father noticed that I wasn’t having a beer at his place anymore. “Why,” he asked me. I told him that I didn’t really want to keep beer there and that it was fine. Yet another example of my not exactly being true to what I wanted or needed — more on this from my post about my visit to New York with my daughter Sophie.
So, unexpectedly, he stops and tells me that he wants me to enjoy coming to visit him, and that he likes that I relax and have a beer while talking with him. You should keep beer here, he said. I insist. I want you to look forward to coming to see me.
He doesn’t really drink at all, so this surprised me. And it surprised me for another reason. Sometimes as a caregiver you look for any scrap of any appreciation of not only what you are doing, but even just that you are there. Once upon a time, just their being there was all you hoped for, and it is strange and wonderful when it happens to you.
My beer of choice now is the Joshua Norton Imperial Stout – Untapped review here. I sit on the couch and sip one while we watch a movie together. Lately we have watched Ninotchka. Twice – I think he forgot that we had seen it already.
One of my favorite things, maybe my favorite thing, is to hang out with a friend and have a beer and just be. He and I never had this before I became a sandwich generation man. Don’t care. We do it now, and beer never tasted so good.