Losing my dad

A chronicle of my exprience with my dad's last year due to end stage kidney failure

27-12-2023 - 17 minutes, 4 seconds -

I started this post on January 20th, 2023. I am going to write this over the next number of months and at some point, I will lose my dad. This is a certainty, as certain as any other terminal diagnosis. My dad has Stage 5 Polycystic Kidney Disease, which means his eGFR (essentially the efficiency of your kidneys removing creatinine from your blood) is 15 or lower. The last time his eGFR was checked, it was 11. His eGFR is falling about 2 points every 3 months. That means in about 9 months, about October this year, it will be 5 and by that point he will likely have passed away.

I lost my mom in 2008, she was 51. She had lung cancer; she smoked cigarettes often so it was very tragic but it was also not entirely unexpected. Her last few weeks and months were painful; she had a fall and went to the emergency room, then she had to spend some time in the hospital afterwards. It was fortunate that once it got really bad, she was only in hospice for about 2 days as I recall. She worried about how we would remember her, she was self-conscious about losing her hair.

In contrast, it looks like my last days with my dad will be peaceful without many symptoms. He says he doesn't have any right now, which is astounding medically because at this point most people have back pain, get lightheaded easily and have other moderate to severe symptoms.

My dad has been looking forward to death in a way for many years. His wife, my mom, has been gone for 15 years. All of his kids are grown and completely self-sufficient. He's met 2 step-grandkids, one step-great-grandkid and 2 blood-related grandkids. He doesn't yearn for anything new or exciting, he just finds ways to have fun and spend the time every day. He calls death "the last great adventure", and is excited to finally learn what happens after he dies. One way he described it was he made the metaphor that he's been outside, playing all day but now it's the end of the day and the sun is setting... he hears God calling him home and he's excited to talk to him about everything that's happened to him. I think the imagery of that is beautiful but it's very melancholy for me to think about what that means for the dad I know, who's alive right now on this planet, who I can talk to for advice, wisdom, even just to geek out about space or science.

It's February 4, Dad finally told everyone. I just got back from a work trip and I feel like I can finally drop the facade, even though I know that's not true. The best I can do is just withdraw. I told a friend without thinking it through, it was kind of a lot to drop on him unexpectedly. I should have managed that better but once I could tell someone it was kind of like I had to. I said it so emotionlessly, he cried when I told him but I just recited it like I was reading instructions on how to make a sandwich. I've just disconnected from it.

Now I'll tell everyone else, slowly. I think I have someone in my life that will try their best to help me through it, which is something I haven't had in a long time. I think most people will be sympathetic but will ultimately avoid the subject due to not upsetting me and death being uncomfortable to talk about.

Dad had a fall and broke his hip while I was on my trip and it's made me pretty concerned. Having a fall has preceded two close family member's deaths.

My dad got his numbers back on Feb 22 and his eGFR actually raised from 11 to 13, which is amazing news. It doesn't change the overall prognosis but it could mean more days or weeks or even months with him. I didn't even consider this as a possibility, but apparently my dad changing his diet had a big effect.

It's now April and my dad's still doing well. I'm really thankful for this but I haven't heard any new numbers in a while and I thought he said he was going to the doctor's around now but he said May...

I had dinner with him and he said it was a nice day and I told him something I'd never told anyone else, that nice days make me nervous because I had a nice day the day that my grandfather died (while I was visiting for a week). I should have thought more about saying that, it seemed like he took that hard but we went our separate ways after so I don't know how he felt about it.

On April 26, I introduced my girlfriend to my dad at dinner. I had told her he was a little behind the times but maybe I made it out to be a bigger problem than it actually was. In any case, we had a good dinner, we had Italian. He learned a few things about her and he got to talk a lot about all the cool stuff he did for his job and overall we had a nice time. At that dinner, he told me his eGFR is 10, which means he'll hit 6 or so around November. He didn't say anything about symptoms but I think he still doesn't have any major ones, besides being more tired than usual every so often.

It's May, and he said he had a little bit of gout but it went away in a day or two by drinking a lot of water. We both know that stresses his kidneys out.

It's May 31st and we skipped dinner together once because he had a lot of leftovers. I don't like losing the opportunity to spend time with him but he sees all of my siblings and friends as well as he takes naps very often. I can't imagine how fast time must be going for him with that much sleep all the time.

On June 14th I had dinner with my dad. He made a kind of uncharacteristic joke where the waitress double checked he wanted pizza because it had cheese (he's vegan too and always specified no cheese with this waitress before) and he said "yeah, it's not a problem, I'm going to die soon anyway". I don't know what to think of that, but I'll hope it means he's truly at peace with his prognosis.

I'm inviting my girlfriend to meet my dad as much as possible because I see a future with her and I'd like for her to get to know my dad as well as possible. I always was disappointed years ago that my ex never got to meet my mom, so I'm glad at the very least she got to meet my dad.

It's July 5th, my dad and I just had dinner. He was very weary, he said he's not sleeping well and both of his legs are giving him trouble. He said his left leg seemed to be a re-occurrence of Osgood-Schlatter disease when he was younger. He seems to believe that things will get worse from here. When he gave me a hug goodbye he said "I love you Tyler, I hope you know that". I do, I've spent 33 years learning from him, emulating him and talking with him at great lengths about everything. He also said that we have inside jokes that not many other people will get and he's right, we're close and we're a lot alike. Right now I'm okay, but this does feel like crossing a threshold.

I had dinner with my dad and he happened to remember to tell me his eGFR was 9, which was only a 1 point drop from last time. That means it's dropping slower than at the start of the year, which is great news. His leg has also improved somewhat recently, which was unexpected good news.

It's August 10th. I met my newest niece. She's adorable, of course. My dad saw her last week soon after she was born. Today I was thinking that I'm thankful that my dad got to meet her, and she got to meet him, but I am sad that her and her sister, who is 1 year old, won't remember him. My nephew who just turned 5 might, and that kind of makes me sad, that he'll carry the upcoming pain with him while my nieces will only know my dad through the stories we tell.

It's September 5th. My dad's eGFR is 6, which is a big drop from 9 six weeks ago. My dad has had nausea, dizziness and gastrointestinal problems for over 10 days and a lot of food doesn't taste right to him. A lot of those problems are due to his failing kidneys, so I can't help but fear that he might never be healthy again. I'm going to find ways and excuses to see him as much as possible and be there for him. It's regrettable that the original shorter timeline, despite the recent good news, seems to be turning out to be accurate. He's not one to ask for help so I'm going to give it whether he wants it or not. He told me because I checked in with him, but I had to convince him to tell my sisters because he "didn't want to start a panic".

It's September 8th. I had dinner with my dad, he asked for vegetable delight from the place he likes so I brought it over to his apartment. He ate a good bit of it and said it didn't taste too bad which is good. We talked about religion, his memories and practical considerations for when he passes. It was easier not to get choked up now that we're talking about it frankly, knowing he accepts it and even welcomes it takes away a lot of the sadness about the whole thing. I'm sure I'm going to feel a lot of emotions when he does pass though. Even though my dad told my sisters some of his situation, I told them the whole situation so they would see past how much he's downplaying his condition.

It's September 22nd. My dad's doing about the same, no longer driving and rarely leaving his apartment. I watched Hunter Killer with him, his eyes lit up when I reminded him that I would watch it with him today. He stayed awake the whole time, riveted. He said he's seen the movie 4 times already now.

It's September 24th. My sisters are checking up on my dad more, which I'm thankful for. I called him the other day (we usually just text occasionally in between our dinners) and he seemed happy that I called, so I'm going to call him more. I would just like to avoid calling him while he's sleeping, even though he says he sleeps well.

It's October 3rd. Nothing major has happened since September 24th. My dad did fall out of bed but he said he wasn't hurt. People with terminal kidney disease do lose bone strength so any fall is even more dangerous. I've had dinner with him and my girlfriend a few times now, something he's recommended at least once. I'm glad they're getting time together. In all of this, there's a lot to be sad about but there are still reasons to be thankful.

It's October 18th and my dad got his eGFR test results back and it's 7. He's got pain most days. Today when I asked how it was he said it was better than yesterday, but he didn't say how bad yesterday was. It's clear he's becoming weary from his pain, his weakness, his inability to eat more than a few bites. But there's still a lot to be thankful for - my sisters are calling him and visiting him often, and his sister is taking care of him (as much as he'll allow her to do). He's ready. And although I selfishly want him to stay as long as possible, I'm as ready as I can be for him to go too. I tear up imagining living in a world without my dad, but that's my encroaching fate just like one day I will pass away too, as that is also unquestionably my fate. I can't change it, so I can either fight it or love it and every day, I try to learn to love my fate.

It's October 27th, my dad finally got some painkillers stronger than Tylenol and they seem to be helping, which is giving him more energy and he's sleeping better again.

It's November 1, my dad got a bunch of candy for Halloween but no actual trick-or-treaters came by. Luckily I found out that was his plan, so I let my sisters know and they visited him along with his nephews.

It's November 10th. Earlier in the week my dad had trouble keeping his dinner down, even though he only ate a few bites of it. He's very weak and he has pain despite opioid meds.

It's November 17th. My dad is still doing about the same, he's barely able to keep more than a bite or two down, and he won't talk to his doctor until December.

It's Thanksgiving, November 23rd. My aunt brought my dad and he was able to spend a few hours with everyone, although he didn't eat because he didn't want to take a chance or vomiting. Other than that, it wasn't too bad, we sat around a couple foldable tables pushed together in the garage, he sat on a sofa that he said was pretty comfortable. There were a lot of kids there, 2 nieces and 2 nephews, grandchildren to my dad. I had some good conversation with my sisters, but my dad didn't chime in too much. He's persevered quite long, he said himself he didn't expect to make it to Thanksgiving. I feel like Christmas is possible, but if he does make it to Christmas he will definitely be in worse shape. As it is, he's lost quite a lot of weight, something that one of my sisters noticed and commented on. I know and accept the fact that this will be my last Thanksgiving with him, but I also can't imagine Thanksgiving without him. It makes me more emotional because it's a special day that I've spent over 30 of them with him but he won't be at the next one.

Through all the time talking to him, I've come to understand his view on death as a great adventure and I actually do look forward to him being able to rest his body and experience the biggest mystery of all, but I can't help but still feel this upcoming loss of my own. In every way, fate gave me the best possible thing with my lifetime so far with my dad. He made me who I am, he gave me knowledge and interests that defined my entire life. Life owed me nothing but it gave me a truly special gift in my dad I did nothing to deserve. I am about to lose him and I am about to lose a part of myself and my identity. I don't think anything like a person created the universe but if they did, they left in suffering I feel we could have done without. But I won't lose sight of all of the good things, that's how my Dad was his entire life. If he was in pain, he'd say "at least it's not as bad as it was yesterday". He is humble and kind. Even now, he teaches me how to be a better me through his actions and words. I love you, Dad.

It's November 26, one of my sisters told me my dad has been in bed for the last few days, unable to get up. Her and my aunt are working on care for him but it'll take more than two people. He said previously he would prefer a nurse takes care of him so it doesn't burden us and also so she can prescribe medicine if needed.

It's November 29th, I've been working from my dad's house for a few days. He is still able to get up and get to the bathroom using his wheelchair but it takes everything out of him. We're getting in-house hospice care sorted out, he agreed that it was probably time. I'm going on leave this week to spend time with him and help him, checking in with work once a day.

Today's Monday December 4th. On Saturday December 2nd in the evening, my dad passed away. Two of my sisters and I were with him when it happened and the other two got there minutes after it happened and before even the hospice nurse could get there. It happened in a short amount of time and with the least amount of pain possible.

Today I went with my oldest sister who is Executor of his estate to arrange cremation - he didn't want a funeral, memorial or burial so we picked what he would have wanted. Surprisingly, for a person who pretended not to mind all that much he was insistent and clear that he didn't want anything large or complicated. Right now everyone's still processing, including me. I'm kind of moving aimlessly between ignoring my feelings so I can be effective now when I need to be, keeping myself busy with meditative stuff like working on my home lab and being hit randomly with emotion. I told my sisters and girlfriend that I imagine it as being in a boat - right now big waves are coming and knocking me around, sometimes even capsizing me. But I'll keep getting back on and over time the big waves will be further apart, and sometimes it'll be small waves instead. And one day, every wave will be manageable.

It's December 5th. Today, I publish this post, though I don't know if I'll actually share it anywhere. It was mostly a place for me to unload a little bit.

It's December 13th. I went back to work, having some structure has definitely helped. I don't know how I'm doing to be honest. I'm not crying but I'm having 3 nightmares a night. I saw my therapist and that helped but I definitely need to go more to figure out where I'm even at.

It's Christmas Eve. I had a dream last night that I got to talk to my dad again. I told him that I missed him and he hugged me and said he knows and he's sorry he couldn't be here.

It's Christmas. I intended to go to my sister's house early but I slept in by 3 hours. I went over there and it was just her, her husband and her two infant daughters. We talked about a lot of interesting things and I had a great time, but we didn't talk about Dad. If she was in a place anywhere like mine, one unexpected comment could cause it all to come crashing down. She said it's hard with kids, her older daughter who's almost 3 said "paw paw hug" out of nowhere and it hit her like a freight train, but her daughter just kept on smiling and blathering so she had to somehow not get swept with the undertow of the reality that our Dad is gone.

I watched a movie and spent most of it alone. My girlfriend wanted to see me but today I'm just so lost, I can't make even the smallest decisions. I went out to my car and came back 4 times because I kept forgetting things, twice just for my wallet and keys. Hopefully I can see her today but I don't know what I'm going to be doing 5 minutes from now.

It's two days after Christmas and I learned one of my sister's dogs (who is named after another late beloved dog she had) died unexpectedly on Christmas day. The dog had been an irreplaceable part of the family for years. Right now is so hard for me, I can't even fathom what it must be like for her right now.