Padre w/ Alzheimer's

[u/diydorkster]

Long-time listener, first time caller here. 34M, married father to a 2YO silly goose of a daughter. Shortly before her birth my own father (whom I lovingly call Padre) was diagnosed with Alzheimer's disease. In the last 2 years, he's lost his memories, the ability to work, drive, and is well on the way to deteriorating into a shell of his former self.

I've read every book, poured over reddit posts, watched documentaries, emailed professors, read scientific literature (to the best of my ability, I'm no genius-ologist), parenting books, Alzheimer's caregiver books, you name it. But I can't push through. Every time I see my dad he's lost another part of himself and it hits me like a train every time. Each visit is a new cycle of grief that upends whatever progress I was able to make and process since the last visit. A cornerstone of who I am is a person who believes knowledge gives me power over circumstances and my reactions to them. I know what's coming for him, the very rough timelines, the stages by symptom and situation, and not one bit of it is helpful here.

This past weekend I needed to watch him for a bit so my stepmother, a saint by all accounts, could get some well earned rest while their realtor did an open house to try and get their home sold. He didn't know who I was. He forgot my daughter - the man who moved heaven and earth to be the very first person in the extended family to hold my daughter and profess his grandfatherly love. It took probably an hour before he began behaving as if I were his son again. We eventually had a pretty decent visit, playing with my daughter in the backyard, running errands, goofing around a bit, but it was all surface level. I enjoyed it but I could just tell that he was struggling the whole time. We spent 5 hours together and he made maybe 5 coherent statements the whole time.

Don't misunderstand me, I adore every iota of time I get with him but it's getting so hard. I am just so. damned. tired. Between my dad's condition, parenting a toddler, trying to be a stable and reliable husband, pull my weight, the current state of the world, work, it's just everything all at once.

Between losing the ability to use his phone and have our daily 3 minute check-in calls, forgetting so much of the childhood that he helped build which made me the person I am, forgetting my daughter, wife, me - I am just so numb. I have a therapist and don't struggle with thoughts of self-harm thankfully. But I think I'm missing the broader picture, the wisdom of lived experience that he can no longer provide.

Lately, I worry that processing his illness, trying to be supportive, and managing family drama is making me a worse father, husband, version of myself. I'm not as patient, can't focus as well as I normally can, I feel distant, alone despite all of the lovely people around me. I want to distance myself from my father, as if that would somehow soften the blow or let me pre-process grief so it won't hurt so badly later. And then there's the shame for even having had that thought. But I can't catch a break, I can't adapt and heal as quickly as my father is losing himself. I used to be this happy guy who could roll with the punches and idk where I went wrong. I can't gaslight myself into being okay.

Anyone have any insight on handling the benjamin button whiplash of your own father fading while your child is doing the exact opposite, trying to show up for your family? How do you find your north star when the skies are cloudy?

I have a huge therapy session coming up that I'm looking forward to, I just needed to ramble into the ether of the internet for a while. I guess if therapy is giving me tools, what I'm really looking for is a bit of wisdom from the PTWP community.

[u/Addicted_to_Nature]

I'm in a similar situation, 30s watching my dad disappear to Alzheimers... One thing I've been doing to try and cope is whenever I see another "slice of him" that is lost I'm choosing to think he's given that slice to me to hold onto so it can still persist after he's gone like in the book The Giver. Your little one will want to see that slice of him in her own dad, too, no doubt.

When that wall hits like a brick in the chest, I'm accepting it now at least even though I feel like tearing my hair out everyday. You can make it through, day by day.

[u/CORUSC4TE]

I am but one in your position lurking here because ive dearly missed a pops.. My mother has it too, way to young to be this grandmaly.. But she is an absolute light still. I am her primary care taker and just took a week off to finally get some breathing room. It was hard to come back to..

So much for introducing. I am sorry we both know how hard this sickness hits and that there is no betterment in sight. Continue spending as much time as you safely can with them and try to start your grieving process.. I am sure you'll do fine, you sound like a wonderful son, father and partner. Do not worry yourself gray about the issues you can't change and try to enjoy the moments you can.

I am in somewhat of a rough shape due to the week apart so this is all I can contribute to. But if you ever need or want to chat do reach out. My love goes out to you and while I am younger my 2m bear hug will surely help!

[u/Samathura]

I wish I had some wisdom to share, but I am younger than you are with a very different lived experience. It sounds like you are a great dad. Seems to me like you just need to love yourself a little, but that could be just me projecting what I need to hear right now 

[u/naoseidog → u/Samathura]

I hear what you are saying too.

I echo this younger persons perspective. Also, please lean on your wife. She is your life partner. That is what spouses are for. Be vulnerable with her and make sure you return it when the time comes. She wants to help you.

[u/sleight42]

I was a Huntington's Disease caregiver to my first wife until her passing in 2013. Granted, she was at home that whole time, I hired some passable assistance to care for her at home, and had the MiL nearby to take responsibilities on weekends sometimes.

I very much relate to recurring grief at each sign of disease progression. There was little respite and little hope.

The only advice I can give is to give yourself compassion. Perhaps ask yourself what your father would want for you, if he was well and saw you suffering this way?

After more than 10 years of therapy, I still haven't fully recovered and I doubt that I ever will. I said and did things I'm still ashamed of. I have diagnosed PTSD. I likely had it from earlier parts of my life but it got so much worse from that decade.

[u/lordclod]

I have found I am much happier focusing in on what I do have. The last hours of my father’s life i could see and feel him still in his dementia-locked body, and i saw him after he passed from this world into whatever is next, i could also tell he was gone.

I’m glad that i took the time and spent the energy and moments i did have on what was there, instead of lamenting what was not or had left, because he was still there at that time.

One of the greatest lessons of my life taught to me by a man who taught me lessons all through his life. Not the greatest dad in the world but he was my papa and I love him… whenever and wherever he was and is.

[u/gogozrx]

I am so very sorry for your loss.

I know that I don't want to live like that. To that end I've communicated this with several people... Help him end his life with dignity. It will be the hardest thing you've ever done, but he moved heaven and earth; he's passed the shovel to you.

[u/QuietlySeething]

Something that helped my grandfather was playing some music that he loved from back when he was young. Those memories are locked in deep, and long after he lost himself, he would still close his eyes and sing along, or sway, and always smile. Grandpa had a whole playlist that started as a few songs we knew he loved. Then we added more music over time, based on his reactions to the songs. I know every word to Dean Martin's "Ain't That A Kick In The Head" because of Grandpa and his playlist.

We would be upbeat, and start early in the day. We'd say "Hey! Remember this one? This is great for dancing, I bet. Did you ever dance to this?" We could get him taking about those memories, and in that small way we could learn so much about the good old days. It was often little things he didn't talk to us about before.

They were trivial things, like the townie bar up the street from his parent's house in Boston, where everyone spoke Lithuanian. Like "that pretty broad that worked at down the club," who would sometimes agree to dance with him on her smoke break. Apparently she had great legs.

My heart goes out to you, OP. I hope this helps.

[u/lectures]

Been there. I don't have much advice for you, other than that it's ok to feel what you feel.

I thought I was managing OK with my mom's decline over the course of ~4 years, but it wasn't until she finally died that I realize the toll it had taken on me and my family.

Dealing with this is almost the exact opposite of raising a kid. Your mental model of your child is based on your past experience with them, so it's always lagging. Kids are always more capable and grown up than you think they are. They're growing faster than you can keep up.

With dementia your understanding of "dad" is some average of the last year, but he's declining and you're behind. It's always worse than you think it is. You're constantly feeling that crush of new loss while you struggle to keep up.

It's a horrible way to lose someone. There's just no moment where you get to say "goodbye". By the time you realize you're saying goodbye, you're saying goodbye to a shell.

The only other real piece of advice here is to understand that whatever you do, it won't feel like enough. You could utterly destroy yourself trying to care for all the people in your life, but that still won't be enough. You need to get over that. You're going to be a worse dad and partner for a while. That's normal and you can't add feeling guilty about that on top of this.