When I saw my parents on the way to a wedding last month, I tried to get my mom to consider respite care for my dad as his dementia progresses.
“I’ve been looking,” she confessed. “But I can’t find a male nurse. There’s plenty of females in the business, but I haven’t found a guy yet.”
“Why do you need a guy?” I asked.
Mom cleared her throat and answered in hushed tones, “Well your father is very hands off with you children, but with women not related to him….”
My stomach sank, but I can’t say I was surprised – inappropriate behavior, whether words, actions, or violence, is part of the process. I expect my dad to disintegrate into anger, impulsiveness and inappropriateness on his way to diapers and total disorientation.
I kept my voice level and clarified, “He’s started to get ‘handsy’?” mostly so it was out there and she’d know I was OK with whatever the real story was.
“No!” My mom was shocked at the idea. Then her voice got lower still, her face going pink. Finally, she said, “Sometimes he walks up to me and he’ll say, ‘Who are you?’”
I had not been expecting that. I mean, eventually. But I’d thought it was farther down the time-line of things I’d have to accept. Crazy, right? Ready for Handsy Dad, but not Gone Dad.
Mom just looked at me, eyes all red and glassy, and I understood that however briefly, the entirety of their relationship had blinked out of existence for my dad. Forty plus years together erased.
Mom said, “I tell him, ‘I’m your wife. Your spouse,’ and then he hugs me. But what if there was another woman here? If she said, ‘I’m the healthcare worker’ or ‘I’m the housekeeper’, your dad would probably keep his distance. But what if she encouraged him to be affectionate? What if he hugged her? I’m not ready to lose him in that way. I can’t.”
It blew me away a little — with everything else that’s going on in their lives, and how my dad is in many ways already gone, she’s still afraid to lose him.
It’s been this bad omen, hanging over my thoughts since. I know there is no immunity. Someday soon, my father will not know who I am. The tentative attachment we’ve had all my life will break, and break again, until there is nothing left. Even if my dad is still physically here.
Greater even than that fear, is the understanding now that there may be a day coming when my own husband may not remember our shared lives together. Or that I don’t remember him.
I’ve been thinking a lot about books lately, about how some characters are so real we fall in love with them. But never ones who have an easy life. It’s so strange that we love most when terrible things happen.
When we left my parents house, my youngest daughter cried. She is my child who feels everything greatly, happy and sad. For twenty minutes, she clung to my mom, tears running down her face at having to be separated from family again. On one hand, my heart was breaking for her. On the other hand, I thought, how beautiful this is. When kids are happy and wave ‘bye’ as they head for the car, you don’t feel the depth of their love like you do when they are sad to lose you.
It makes me reconsider God, if we are made in his or her image. Maybe s/he feels the closest to us when we are at our lowest, because that’s when we radiate the strongest emotions. When things go smoothly, there is no connection, no sympathetic vibration in the soul of the observer. Maybe that is why we love characters who have terrible things happen to them, and love them more for surviving it, sometimes loving them the most when they don’t. Maybe a broken heart is the most powerful expression of love.
Anyway, this blog has turned into a nonstop cry fest (for me, anyway). It seems I never have anything positive to say anymore, and I know that’s a downer. The truth is, most of my thoughts these days are downers, so it’s write this or nothing.
Someone asked about therapy – it’s one of those chicken and egg things where it feels like it’s working, but I’m not getting a ton better, but I think I might be a lot worse if I hadn’t started. Therapy is hard fucking work, and a lot of tears, and I feel onion skinned all the time. I wish I had faith that if I said, “Fuck it, no more therapy, I’m gonna repress this shit up and go back to normal” I could do it. But instead it feels like I’m bleeding out and having a therapist offers the possibility of triage. I go in tomorrow after missing a month, so we’ll see if anything changes.
However hard it is to believe it is not a downer.
Perhaps for the same reason that we like the characters that have hard lives, for some of us (ME!), reading how others are living through hard times is comforting.
Not that I am wishing you this terrible experience, and my heart breaks for you and your family.
But to know that there are others out there not repressing … traveling through the deep dark days … means that I am not alone.
I hope your mom finds a way to connect to others that are traveling her path. Right now it is the only thing keeping me going.
And.. I feel the same way about therapy. I finally, after I am not sure how many months, I had a decent session last night. On the other hand, I have not exploded into a million pieces in all these months, so it has “worked” in that way.
Sending you happy, maybe sometimes ironic, thoughts.
Anna makes excellent points.
Not a downer here, either. My heart breaks for you, and I wish you (and your mom, and dad, and everyone else) didn’t have to go through this. But it doesn’t upset me *for me*.
It is both awful and good to see how life goes on, how people endure, even though awful things like this.
This is a relatively miniscule thing: my 4 y.o.’s emotions are generally very close to the surface. When she’s exhausted and my iPad (her favourite toy, currently) is out of charge, she will sometimes burst into tears. I hate that she gets so upset — but I love the closeness and trust and love when she cries on my neck and lets me hold her, when she lets me connect with her, when she lets me be there for her.
Sometimes, day to day, we have to be guarded and happy (or ‘happy’) and just fine. When we’re in a vulnerable heap of emotions it’s a lot more painful but oh, the connections you can have with other people. Which is a longwinded way of saying I understand and like your onion metaphor.
You’re grieving your dad now and have been for some time. Easier for you because you didn’t lose him suddenly. Harder for you because you didn’t lose him suddenly.
I feel for you, love.
So, you know how you said that we love characters who are suffering and surviving? How maybe god recognizes us most (or vice versa) when we are at our lowest? That’s where YOU are, and that’s why your authentic voice doesn’t have to be chipper.
This blog is a character. It’s your safe, anonymous place to be the person who lives behind the mask. I think that’s why I love reading along with your journey through this bleak tough time. I hate it FOR YOU, but I love what you are doing to survive.
I’ve been reading your blog for a long time. It’s not a downer – but like therapy for me, because I’m going through a very similar experience with my Mom. I see that I am not alone.
Hang in there. We really don’t have any other choice, do we?
You give me the courage to write the downer things. In theory right now, because I’m still working up the rest of the courage to actually do it this time. I’ve successfully done it previous times. I’m rambling. I’m sad with you.
Thank you for allowing us to be a part of your journey. I wish I had something pithy to say, but sometimes life just sucks.
“All life is suffering” and three more Noble (agonizing) truths each more DIRE than the next >.< it's a good thing for you to contemplate these spiritual issue. It's a GREAT thing that you let us in. You're such a fine writer.
And the *"little broken winged thing" at the bottom of Pandora's box is Hope which is love which is grief which is hope …you get where I'm going…Much love to you and yours.
***Harrrumphs for everyone speaking to therapy and the **"Holy SHIT that hurt,why am I going to the place that HURTS me allla time? It's like so dysfuntion…oh. Right." I highly rec What about Bob.(humor helps salve that skinless feeling…stand up comedy is my jam.) I highly rec that you just keep dragging your all your bad selves in. I find it helps to give myself "free" time after therapy so I can lay my face down into my pillows for a few hours. Face therapy…patent pending. It's is RARE to feel good/better/best sensations after therapy. It happens tho. Is great..but as someone above wrote..you won't see all the little progressive wins along the way unless you do look back now and again. Which HURTS. What can I tell ya? Fucking pain. It hurts. Am sorry.
Your mom? all my best thoughts love and prayers to her and your Dad. Her suffering is noble in it's devotion.
*Langston Hughes **Me ***Mel Brooks as Governor in Blazing Saddles I quote both here and on the regular in IRL, "Hey, I didn't get a harumph outta THAT GUY" I find myself hilarious,other ppl? YMMV.
young-eisendrath.com – new book “The Present Heart: A Memoir of Love, Loss, and Discovery” by Polly Young-Eisendrath about her husband and Alzheimer’s
This post left me speechless and haunted in the days since first reading it – I haven’t found words to do justice to the gorgeousness of your writing and capacity to recount such powerful moments in dialogue and reflection. Flummoxed in the best possible way. As the only local child of four (the others live thousands of miles away)and therefore the first responder, I’ve been facing some truly difficult circumstances with them that have tossed me into the wild sea of reorientation to aging issues. Hello lifeboat? Toss me a line…
My heart breaks for you every time I see these entries. And that’s okay. And yes, therapy hurts. Imagine that you broke your arm but never sought medical care. It would eventually heal up, but it would heal up wrong. And then, when you did seek medical help, they would have to break it again in order for it to heal right. It would hurt and it would take time, but you would be better in the end.
What everyone else said. Our hearts break for you, but this blog is not a downer. Your writing in the midst of this unfolding tragedy that is the loss of your dad is very real and beautiful. Besides, all of us have either dealt with parents getting older/sicker/dying or will have to, some day. You are not alone. Keep writing please.