Let’s be real: it doesn’t get better


Tomorrow’s the 21st anniversary of Dad’s accident. For those of you who don’t know, my father was in a motorcycle accident right after I got my Bachelor’s degree. He was hit by at least one car. He broke everything. His lungs were shredded. But the worst bit was that he had a stroke which resulted in the loss of a large section of his brain. Most brain function recovery happens in the first 5 years. 21. Now that we’re all on the same page….

Yesterday the annual recap post would have been different. But today the pharmacist managed to give Mom’s flu shot in her shoulder straight through her muscle and into the bursa. Result? Mom has Shoulder Injury Related to Vaccine Administration (SIRVA). She can’t lift her arm. She’s in horrific pain. I finally gave her morphine an hour and a half ago, and she’s fallen asleep.

Mom has a really high tolerance to pain, so when she does have it, she freaks out. And she deserves to. But when Mom freaks out, Dad loses control of his bowels. Fortunately, he’s in diapers 24×7 at this point, so this isn’t as unpleasant as it could be. Somehow, she’d managed to clean him before I even got to their place from work.

Move forward several hours. I got Mom upstairs in bed and Dad downstairs and fed. When Mom’s pain got severe again, I decided I’d run get some lidocaine from my apartment and feed my cats. I asked Dad, “You need to pee?” “Huh?” “Do. You. Need. To. Pee?” “No.” “Okay. I’ll be back in an hour. Don’t get up.”

Naturally, he got up. He needed to check on Mom. He’s still that good guy he was 22 years ago. On the plus side, he didn’t fall, because Mom had to come downstairs to walk him back to his chair. Someone has to be holding on to him at all times when he stands because he loses his balance and forgets how feet work. You know how toddlers have that stage where they go limp when they don’t want to do something? Now imagine a 180 lb. man doing that. We have a transfer belt on him whenever he’s awake. It’s made dealing with it easier.

It’s sweet that he loves her. It’d be better for her if he’d listen. Or remember. But I can’t get mad at him for either of those because he can’t.

At times, he reminds me of a toddler. Other times, he reminds me of a petulant teenager. His oxygen saturation is always low, but when it drops below 89, he’s particularly prone to peeing on the floor instead of in the toilet or falling over. So we sometimes use a pulse oximeter on him before we let him walk. Sitting incoherent Dad is easier to deal with than standing incoherent Dad, heading for the Earth at 9.8m/sec. And he gets in these phases where he says, “No!” and flings the pulse oximeter across the room. Fortunately, these spells are few. But it reminds me so much of a teenager’s “You can’t make me” attitude. It’s got to be hard for a 70 year old to obey his 40 year old daughter.

How do you deal with that? With a petulant toddler, you can manhandle them out of a situation when they’re not yet reasoning properly. With a teenager, you can let them go and assume they’ll learn the hard way whatever it is you’re attempting to protect them from. We can’t reason with Dad. We can’t manhandle him. And he doesn’t have the ability to learn. So I really have no idea what to do. Maybe folks dealing with parents in dementia have advice?

I was reading a book about folks with dementia, and the doctor pointed out that every time your loved one has an incident, you reset the bar, only you put it a little lower. You continue to lower your expectations and cheer at the smaller and smaller achievements. And the only way out of that cycle is death, the patient’s or the caregiver’s.

Mom takes care of Dad 24x7x365. I come over many Saturdays to do the morning routine and give her a 6 hour break from babysitting and bodily fluids. Fortunately, my friend Dawn convinced me to get her to hire caregivers, so we have 3 or 4 folks trained now who can give her time off during the week. This is good for me because it means I don’t have to ask off of work every time Mom wants/needs to leave the house. And I get to go to the Renaissance festival. But I still don’t know how she does it.

This is the annual State of the Brain Injury address. Nobody asks for this. My folks didn’t ask for kids, and they still changed my diaper for years. I can return the favor. I’m not looking for applause. I just know that reading the honest accounts of others affected by brain injury has been useful for me. So here’s mine.

It doesn’t get better. You learn to deal with it better. And then you lower the bar, adjust, and move forward.


5 Responses to “Let’s be real: it doesn’t get better”

  1. You’re all very brave and I admire your positive attitude in the face of so much… stuff. Hugs to you, your mom, your dad, and your kitties too. ❤ I managed to catch the link before it went away. 🙂

  2. 2 Vickie Higgins

    Dealing with a severe issue for awhile is hard. Dealing with a severe issue for an indefinite time is. . . . You and your mom have attained a level many of us will never know. That is fully to your credit! I have a kind of idea what that might be like. My mother died of complications from Alzheimer’s and now my older sister has it. It is a cruel disease as is any kind of brain damage. My prayers go out to you and your mom. God bless.

  3. Love love love. Of course I mean I love you and mom and dad but also the honesty here and the looking it all in the eye aspect. We’d all be less afraid of the stupid meat body stuff if we do away with the platitudes and affirmations when telling people the state of things.

  4. 4 Jim

    Great read. Very proud of you for persevering. I still look back fondly on meeting your parents and watching them interact with each other. It was very clear to me that they were still very much in love despite all that had happened. Thank you for sharing.

  5. 5 Katherine

    Thank you for sharing and being so direct in your relating of these experiences. What a series of radical changes in all your lives put in motion by one event. Thank you for your courage and vulnerability.

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