Tag Archive | caretaker

“I have to move out of here…”

I had a stressful Monday, from computer problems the first 90 minutes of my workday right up to leaving work and finding my car in the garage with a flat tire. Thankfully, I was able to get the tire fixed relatively quickly and inexpensively. I picked up takeout for dinner because I was in no mood to cook.

Got home and grabbed the phone to call Mom while I dished up the shrimp with lobster sauce and poured a glass of wine.  Conversation begins like this:

“Hi, Mom.”

“Hi, sweetie! How are you doing today?”

“Better now. It was a stressful day, but it’s all good. How are you doing?”

“Oh, I’m doing pretty good. But I’m going to have to move out of here…”

I had about two seconds for my heart to drop into my stomach, thinking “Oh God, not this! Not today! What could have happened? She’s been so happy there…” — and then she continued,

“… because people are watching TV and I can’t really hear you.”

“Oh! You want to move into the other room where you can talk better? OK, I’ll hold on.”

Huge sigh of relief. It’s all good.

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A Caretaking Life

I’ve been a caretaker pretty much my whole life. Even in elementary school I was the one who fussed over my friends and tried to take care of them. (I blame my parents for not giving me the baby sister I kept asking for. LOL) I spent my twenties and early thirties taking care of a partner who had significant undiagnosed mental illness, and who progressed from occasional depressive episodes to delusions and agoraphobia so bad that I had to handle everything that involved dealing with the outside world, even by telephone. I stayed in that relationship until it was almost literally killing me, finally escaping (despite my partner’s threats of suicide) in my mid-thirties.

After a couple years being single, half of which was spent taking care of a roommate with substance abuse issues, I met the man who would become my husband. He was smart and funny and passionate and insanely talented – and bipolar. He was managing it pretty well with medication for the first year or so that we were dating, but as time went on he couldn’t keep it together and I stepped in as the caretaker. Again. He lost two jobs in a row because of his depressive episodes, and I ended up supporting both of us. Again. He had two suicidal episodes that I know of in the six years we were together, before completing suicide in March of 2010.

We were passionately in love and he was my best friend. I thought my life was over when he died. I was finally healing from that loss and just starting to be able to appreciate the freedom of not having to take care of anyone but myself, for the first time in my adult life… when it became obvious that my mom needed me to take care of her.

At first, I’ll admit, I resented that. I wondered, when will it be my turn to take care of me? Is living my OWN life and not the life of a caretaker really too much to ask? I tried to arrange things so that my mom would be safe and well cared for without intruding too much on my daily life. I was afraid of becoming Laura Linney’s character in “Love Actually,” who lets responsibility for her disabled brother keep her from having even one romantic encounter, much less an actual relationship.

Over time I came to realize that I worried about her and felt responsible for her well being no matter what I did. Over time my attitude shifted and I stopped carefully guarding my free evenings and limiting the time I spent with her. I stopped worrying about when I would find time to date or write my memoir. I surrendered to being her caregiver.

During the last few months, when I feel anxious or frustrated about the level of care she’s receiving, I’ve often found myself contemplating having my mom live with me. I’ve discussed it with my therapist and also with acquaintances who have experience being 24/7 caregivers for their parents, and everyone agrees it would be a bad idea for me to take that on. My therapist went so far as to joke that she would lie down in front of my car to stop me. I know they’re right. I can come up with a dozen reasons just off the top of my head why it wouldn’t work out well to have my mom live with me. Why, then, does it sometimes sound so appealing, so right?

I had an “ah ha” moment today. This business of being responsible for someone as vulnerable as my mother is now, it’s scary. And I think it’s human nature in a scary situation to gravitate toward what feels familiar. The caretaker role is a comfortable and familiar one for me. I’ve been practicing it all my life. It would be easy for me to fall back into that role as my primary identity. Easier than learning how to advocate for her care in a facility, as I’ve never been good at confrontations. Easier than delving into the painful loss of my husband for my memoir. Easier, let’s just admit it, to let my mom be the excuse for why I don’t date than to risk my heart again.

In reality, of course, there would be nothing easy about living with my mother and being responsible 24/7 for her care, especially as her dementia progresses. I would most likely grow resentful and it would poison the close and loving relationship we have. I owe it to both of us to make a different choice – to choose, for the first time in my life, to give my needs equal priority with the responsibilities of caretaking. The real challenge here is to maintain that balance so that both of us can be as healthy and happy as possible.

Thanksgiving

Thanksgiving weekend one year ago was when this journey began – when Mom crashed her car and ended up in the hospital with elevated blood pressure and a possible TIA (mini stroke), and the case manager told us she could not go home to live alone. It’s hard to believe that it’s only been a year. One year that has encompassed two major moves, two hospital stays, a whole lot of adapting to increasing physical and mental limitations, and (for me) a whole lot of learning about, and accepting the responsibilities of, being a caretaker.

This Thanksgiving was the first one I’d spent with Mom in several years, and I was determined to have it here at my apartment so that she could have a real, home-cooked Thanksgiving dinner. No restaurant meals and especially no depressing holiday spent in an assisted living facility, not while I’m around! Though she’d been discharged from skilled nursing five days before, she was still not strong and her legs were certainly too weak to climb the eight steps into my building. I borrowed a wheelchair from her facility and, with the help of two strong friends, hauled her up chair and all, step by careful step. Just getting in and out of the car was enough exertion for her that she needed a nap as soon as I got her inside.

Thursday I let her sleep late and then made us pumpkin butter pancakes and coffee for brunch. She watched the Macy’s parade while I did food prep and got the apartment ready, and she took a mid-day nap so that she’d have the energy for company. By the time my friends started arriving around 4:15, I had her dressed and sitting in her wheelchair and had even curled her hair. She did great, though she only ate about half of the salad-sized plate of food I set in front of her… and my friends were great, too, making a point to engage her in conversation and make sure she felt included while I was busy in the kitchen. Around 8:00 p.m., I think, she told me she needed to lie down and I wheeled her into the bedroom and helped her into my bed. But she got up after half an hour, wheeled herself out into the living room, and joined us for pumpkin pie. All in all, it was a good day and I felt very blessed. And very, very thankful.

All that excitement must have been a bit much for her, though. The next day she was so tired, I could hardly get her out of bed. We didn’t dare try to wheel her down the steps, so my guy friend from across the street held her arm and helped her very slowly descend the stairs. She went to bed as soon as I got her back to her temporary room at the assisted living. But she got up again at dinner time and agreed to let me take her down to the dining room in the wheelchair.

When I greeted her table mates in the dining room, I asked them all if they had a good Thanksgiving. “No,” said one of the gentlemen. “I did not have a good Thanksgiving. I didn’t have any of my family here and I had a cold sandwich in my room for dinner.” It hurt my heart to hear that and I wished we could have taken him home for dinner with us. I’ve decided to bring her three table mates little holiday presents at Christmastime, and I’m wondering if I might even be able to bring that particular gentleman a plate of leftovers from our Christmas Eve dinner. When we said goodbye that evening, Mom said to me again, “I don’t know what I’d do without you.” I am just so grateful that I don’t have to think of her having a cold sandwich alone in her room on a holiday. Having her with me for Thanksgiving was a lot of work, but it was so worth it.

Caretaker anxiety

My last night in Prescott, I woke in the wee hours from a most disconcerting dream. I was driving with my mom along the side of a lake and somehow I ran the car off the road and into the lake. (It wasn’t like I was speeding or spun out of control, just cruising along and then suddenly I’m over the edge.) I heard the loud splash as we hit the water and my heart started pounding. “No!” I said, in shock and denial, “That did not just happen!” The part of me that was aware I was dreaming tried to undo it, just will the car back onto the pavement, but it didn’t work. I watched the water rising up past my window as we sank and had a horrifying realization that we were about to die and I couldn’t do a thing about it. I don’t think I even tried to break the glass, just sat there in shock watching the water rise. Then I woke up, heart racing and gasping for air.

Although it was very brief, it was beyond disturbing. Everything about the dream has stuck with me. I can still vividly recall the sound of the splash and the weird, hazy underwater light as the car sank.

It doesn’t take a genius to interpret this one. I’m the one responsible for keeping my mom safe and I’m terrified that I’ll make a wrong move and cause (or fail to protect her from) harm. I’m also the one who “drove” her into this assisted living community, over the objections of our family friend who had heard some negative things about the care residents receive. That’s at the heart of my anxiety, I think. I observed a couple of issues with medication management during my visit and now I’m second guessing myself, fearing that I’ve sent her into harm’s way instead of to safety. It just gets so overwhelming at times. I do feel like I’m in over my head. Glub, glub, glub…