I’ve been absent lately, I know. The past six months or so have been some of the most difficult in my life. So many times I’ve wanted to blog, but whenever I would sit down in front of the keyboard, the words would just not come. There’s so much to say, so many emotions, so many worries, so many questions. But they’re stuck in me like cement. When I tried to construct a thought, let alone a sentence, I just couldn’t. And honestly, I really don’t know what I want to say today, other than the words: “I’m still here.” And for me, that seems like a major accomplishment right now.
My mother’s condition has deteriorated. In addition to the Parkinson’s and dementia, she has received two new diagnoses: severe COPD and hypothyroidism. Her daily intake of medications has multiplied, both in number and in complexity. Her dosage scheduling is like a one of those frustrating puzzle games where you have to constantly move the pieces around until you hit on the solution. One pill has to be taken first thing in the morning one hour before she eats anything or takes any other medications, and four hours before she can take any vitamins or supplements (and she takes a lot, so those now have to be redistributed throughout the day). Her next round of medicine includes her Parkinson’s med, which apparently can’t be taken in close proximity to her consumption of protein. But she takes that four times a day now… so the trick is figuring out when she can have a meal.
Meals are a challenge anyway… she doesn’t want to eat. And she doesn’t want to drink fluids. And she doesn’t want to exercise, or even move. She spends all day lying down in her recliner, sleeping, except for a when she goes into her bedroom to take a nap. She doesn’t want to leave the house (except for doctor appointments) and she hardly talks to me at all. She resents me enormously, and constantly refuses my help. She hates it when I try to encourage her get up and take a walk, read something, or at least turn on the TV so that her brain will have something (anything) to latch onto. I am not her favorite person. She is not a happy woman. She is narcissistic and passive aggressive, and everything is my fault.
The daily struggle (please eat, please drink, please move, please engage, please acknowledge when I speak to you so I at least know you have heard me ) has worn me down. Every day looks the same. I’m tired, but I have to keep going. I’m frustrated, but I have to hold my temper. I’m grieving, but I don’t know what to do with that. I’m overwhelmed with the enormity and scope of what’s happening. Even as I write this, there are so many underlying events and untold stories that make up the current situation. Just thinking of them all wears me out. Writing them down seems almost futile…. pointless. It is what it is.
I had been working full time (from home) while taking care of my mother, but the job stress and the caregiving stress were a lethal combination. I’m unemployed now. And I’ve gone through what little savings I had left. The loss of income has added another dimension to my dilemma. Now, I’m not just tired, I’m trapped.
A week and a half ago, during one of our petty daily scenarios, I reached the proverbial tipping point. I had had all I could take. I left the room, threw a few things into a tote bag. I got into my car and as I was pulling out of the driveway, I called my brother and told him he needed to come and take care of my mother. I went AWOL.
I drove and cried, drove and cried, for hours. I didn’t know where I was going. I didn’t care. I just drove. My brain was foggy. My heart was aching. All I wanted to do was find a shady spot where I could pull over and just rest.
I had enough money in my wallet for half a tank of gas and a cheap motel room for the night. It was a filthy place, but it was quiet. I didn’t want to talk to anyone. All I wanted to do was rest. And the last thing I wanted to do was go back. In fact, I had convinced myself that I wouldn’t go back. They would just have to figure something out. The next day, I got back in my car and headed south again… just driving. Numb. Determined. Aimless.
By this time I had checked in with a friend, and I went to talk with her. Then I hit the road again, this time heading west. Just driving and thinking. My half tank of gas didn’t last too long. Finally that night, long after my mother’s bedtime, I reluctantly returned to her house. My brother was still there, and we talked for a little while. Then I went to bed.
The next morning I got up, and when I went to give my mother her first morning medication, she didn’t say a word about my absence, or ask how I was. Just another day. And then another, and then a week, and here I am now.
I’m at a loss. A loss for words. A loss for ideas. A loss of independence. And a loss of identity, too, I sometimes think.
But as I said at the beginning of this saga, I’m still here.
- It’s Obvious I am NOT a Doctor… (caregiving.com)
- Presenting My Claim Ticket (caregiving.com)
- Long-Distance Caregiving: Tips for the Check-In Call (caregiving.com)
- The Test (caregiving.com)
- The Whole Person (caregiving.com)