When I was a dumb kid, all I knew of caretakers was that they were mostly plain looking women in their 40s or 50s. They were boring beyond belief with no aspirations to speak of, and so naturally the responsibility was theirs to take care of their loved one because everyone else in the family was probably busy doing more important things. They were equal parts nun (to give up their life selflessly), cat lady (to deal with the isolation), nurse (to deal with the weird medical stuff), and elementary school teacher (for a good dose of patience). Basically they were Mrs. Doubtfire. If you don’t know who that is, it’s ok; I’m just a lot older than you.
The last words I would have used to describe a caretaker would be musician, single male, 33, or ME. And yet when confronted with the option of my father wasting away in a hospital and the government taking everything he owned to pay for his care or taking him home and doing my damndest to get him strong enough for brain surgery I chose the latter. I had a strange peace about it knowing that it would be a temporary situation (2 months out of the hospital and his insurance paid hospital and rehab days would reset), but I had no idea what it would involve. Being a perfectionist, if you label a situation as “unknown outcome” it will freak me the crap out, but I’ve started to consciously relabel those parts of life “accelerated personal growth”.
So I took my dad home. Just me, a 67 year-old, and my dog, Rev. Lord help me.
The first night I got about 3 hours of sleep. My dad had to use the restroom every 2 hours or so and couldn’t walk without me standing next to him to make sure he didn’t fall. His muscles and joints were rigid from being bed bound for a year and a half. Think of those scenes in WWII movies where they rescue the older people from the concentration camps and the prisoners can’t walk because their muscles have atrophied. The next day we began the cycle of me telling him what he needed to do, him saying he couldn’t do it, and me saying, “You haven’t tried yet. Try.” No matter if he needed to get up from the recliner to the table, scoot his seat forward, change his underwear, etc, it was the same routine. “You haven’t tried yet. Try.” Him, “I just did.” Me, “try again.” Him, “I’ve never done this. Not in my whole life have I ever done this.” Me, “Yes you have. Try.” That would usually elicit a slew of personal attacks from him like,
“I just need some help.”
“Why can’t you just love me.”
and escalating to
“Why don’t you like me?”
“I must have made a mistake raising you.”
or his ultimate trump card
“I wasted all my love on you.”
No, I was not mistreating him, and was affirmed by all the therapists that I was approaching his rehab correctly. I learned I had to be an emotionless, non-reasoning wall to deal with him or I would quickly go crazy. I’ll cover this side of dealing with him in the next blog. We’ve learned he more than likely has been a high functioning Narcissist with borderline personality disorder his whole life.
I thought I’d have some time to remain creative or get some practicing or reading in, but the time for it didn’t exist, and when it did, I was so worn out that was the last thing I wanted to do. Here’s a little timeline of our typical day to show you what I mean.
9:30AM - Wake dad up so he can walk to the recliner. Open all the blinds so the room is filled with daylight and less depressing. Turn on Fox News so he has some idea of what is going on in the world and maybe something to carry on a conversation about.
10:00AM - Make breakfast. I have now mastered most versions of eggs and breakfast things and make a killer healthy smoothie. Time to start a diner.
10:30AM - Eat breakfast
11:00AM - Pills and breathing treatments
11:30AM-1:00PM - Drag him through a series of 5 exercises. Yes, it takes him this long to accomplish this.
1. 10 Sit to stands
2. Standing in place for 5 minutes
3. Arm exercises with canned vegatables
4. Hamstring stretch
5. Balance exercises
1:00-2:00PM - Clean up breakfast and figure out what to make for lunch. Maybe take Rev outside for 30 minutes.
2:00PM - Eat lunch
2:30-4:00PM - Figure out what to make for dinner. Make some coffee and listen to some music. Teach Rev some tricks.
4:00-5:30PM - Round 2 of same exercises
5:30-7PM - Make dinner
7:00-7:30PM - Eat dinner
7:30-8:30PM - Clean up kitchen and bathrooms. Change sheets if needed. Laundry, etc.
8:30-9:30PM - Last round of exercises.
9:30-10:00PM - Breathing treatments and pills / bed time for the parent.
10:00-1:00AM - Me time. Only time I’m not getting a request for something the whole day. Let Rev run around outside, drink a beer, play some guitar, Netflix, etc.
In between the lines are all the times I’d have to get him water, walk him to the bathroom, wait 30 minutes for him to change his underwear or shirt, sponge baths (it took a while to get used to seeing a naked old man repeatedly) or searching netflix for something for him to watch, etc.
I’ve had multiple people tell me that I’ve gone through the experience of having a newborn baby without being a parent. Maybe so, but with a newborn that will never grow up and can lob nasty verbal attacks your way instead of just crying. I can not imagine how hard it would be to attempt for years on end. That is a special kind of selflessness that I’m not sure I or most of us are capable of.
The hardest part of dealing with him was his personality disorder, and I’ll try to explain that in the next blog. For now, just know that caretakers lives are absolutely consumed with the cared for, and they probably need as much help and emotional support as anyone in the world. Community needs to come to these people, because they can’t come to you. Offer to pick up groceries for them. Pick up coffee and go hang out with them for an hour. They’re isolated and can’t leave the house without serious effort. It’s by far the hardest, most emotionally taxing thing I’ve ever done, and I’ve attempted to make a living playing music. That should tell you something. Caretakers are not Mrs. Doubtfire. They are probably the strongest people you’ll ever meet.
Til next time,