O.K. maybe this should be titled “A New Year’s Admission.” Because there really isn’t anything to confess here, just an admission that I need to make to myself.
I have become a Caregiver with a capital “C.” Being a Caregiver has come to define me. It is more than what I do with my days, it has become who I am. It consumes my thoughts, my time, and my energy. It has impacted every aspect of my life and my relationships with other people.
I’m not 100% sure how it happened, but there can be no doubt that it has happened. Three years ago, after making some bad business and life decisions, Dad and I decided that it made the most sense for me to move in with him. It would allow me to save some money while I got my life back together and I could give him some help around the house.
Over the years, I had spoken with Dad by phone nearly everyday. And once a month or so, as my schedule allowed, we would get together for dinner at some restaurant or other. As far as I was aware, Dad was doing great for a 75-year old cancer survivor. I had no idea how much help he required.
When I moved in, I converted Dad’s basement into an apartment for me. The only things lacking were bathroom and kitchen facilities. I assumed that would be no problem, as I could share Dad’s facilities upstairs.
I would pop upstairs to make my meals or walk his dogs, Sue and Hercules. Then I would disappear back into the basement. It didn’t take me long to figure out that Dad’s entire menu consisted of a toasted English muffin for breakfast, a bologna sandwich for lunch, and a microwaved Hormel dinner in the evening. He insisted that this was not the entirety of his menu, just the things that were easiest for him to fix for himself while he was using his walker.
But a quick perusal of his cupboards put the lie to that idea. So, I started cooking meals for both of us. I didn’t mind, I love to cook – and Dad is a very appreciative consumer. This led to me doing all of the shopping to get ingredients for whatever I had in mind to cook.
Eating breakfast together each morning, I discovered that Dad started each day by asking me “What day is it?” He kept an appointment book with all of his doctor appointments in it – but he just couldn’t remember what day it was. I could see from old appointment books that he used to mark the days by writing down his blood sugar readings in the book. But from looking at his then current book it was apparent that he wasn’t checking his sugar regularly – leaving holes in his book that left him unable to figure out what day it was.
Of course not checking his sugar led to him not taking enough insulin. Not taking enough insulin led him to forgetting to take his other medications regularly. And the failure just cascaded from there.
Now I manage his medication, his banking, his transportation to the doctors and everywhere else. I do the shopping, laundry, and a whole host of other tasks. We do have a housekeeper come in once a week to do the bulk of the cleaning, but otherwise it is just me.
Several months before I moved in with Dad, he had a surgical repair done to his artificial hip. Following surgery he spent two weeks in a nursing home. That was horrific. Every day I drove the 100-mile round trip to visit him in the nursing home and take him out for a meal (lunch or supper). Every day I could see him decline.
I’m sure that the folks in the nursing home gave their best – but a nursing home is nothing more than a warehouse for people that nobody wants. I’ve spent 30-years automating warehouse processes so I know a thing or two about warehouses. And that is exactly what a nursing home is. Sure, they do their best to keep the inventory clean and safe – but the are just warehousing the inventory until it hits its expiration date.
During one of my nursing home visits, I promised Dad that once we got him out of there I would never let him go back to a nursing home. After his surgery last winter they wanted to put him in a home for rehab, but instead I took him home. We had in-home visiting nursing for a bit, but it was actually easier for both he and I for me to do everything that he needed.
After the same visit where I made Dad the “No Nursing Home Promise” I stopped at his house to get things ready for his return. His next door neighbor came over and said to me “I’m not sure that your Dad should be living alone anymore.” That was a hard thing to hear, but it really struck home. If the neighbor could see it, it was time for me to quit pretending. So the ball started rolling on me moving in with Dad.
Now, I’m here – and I’ve become a Caregiver.
We have a daily routine:
1) Get Dad up for insulin, pills, and breakfast. Review what is going to happen today.
2) Dad takes a nap while I work with the dogs and do some of the chores around the house.
3) When Dad wakes up from his nap it is time for lunch and more pills. After lunch we do some sort of activity. In good weather we go outside for a walk with the dogs. In bad weather we play with the dogs indoors or work on some other indoor activity.
4) Naps for all of us – including the dogs.
5) Dinner and more pills. We review what we accomplished for the day, discuss what is coming up this week, and make plans for tomorrow. We also pick out what TV programs Dad wants to watch for the evening. This is a bigger deal than it may seem as it requires him to read the newspaper to see what is on TV and then make decisions.
6) TV or cards, sometimes reading.
7) Prep for bed time, getting his C-PAP ready, taking bed time pills, quiet time with the dogs, and a discussion of what is coming up tomorrow. Sometimes Dad likes to talk about the old times, either with my brother and I, or his old college tales, or family life from his childhood. I love these talks.
8 ) Bed time for Dad (and Sue who sleeps with him). During the night, Sue lets me know if Dad gets up or if there is a problem with his C-PAP, or if anything else out of the ordinary occurs.
9) Me time! I do the prep work for the next day, etc. I check my e-mail and correspond with on-line friends, watch what I want to watch on TV, and love on my cat. I keep a calendar, Dad’s medication list, recent vaccines & treatments, etc. on the computer which require regular updates.
The only changes to this routine occur when Dad has an appointment with one of his many doctors (Primary Care, Oncologist, Chemo Treatment, Urologist, Neurologist, or Orthopedic doc).
You may notice one big glaring hole in this schedule – Human interaction. There pretty much isn’t any human interaction, especially for Dad. His friends who used to come around and visit him have pretty much stopped doing so. I don’t know if they think that I would resent it, or if they just think that it isn’t necessary anymore. I do know that they couldn’t be more wrong. I would love to just walk away from him for a few minutes – and he desperately needs to have interaction with somebody other than me.
At least I get out on occasion to do the shopping and talk with checkout ladies, the staff at the pharmacy, etc. And once a month or so, one of my best friends calls and offers to buy me a G & L chili dog for lunch. It isn’t much but it is so much more than what Dad has.
It would be easier if Dad could admit that he needs help. But he can’t admit that. Not to me or to himself. He is appreciative of everything I do, and says so regularly. But he cannot admit that he NEEDS help. So I can’t just have a volunteer or even a professional come in and provide some “respite care.” It has to be somebody who he knows and wants to spend some time with.
If you are reading this and thinking that I’m quite the whiner, please don’t. I’m not complaining. I do love Dad, I love spending time with him, and I love the fact that I can do something important for the man who has done so much for me.
This post is not a complaint. It is just a way for me to acknowledge to myself that I have become a Caregiver. And JoAnn M. or Matt B. if you are reading this – THANK YOU.