Archive for June 11th, 2009|Daily archive page

The care and feeding of a caregiver

I imagine that what is true for me is probably true for many caregivers. We might feel like we suffer alone, but we don’t. We impose our suffering on others around us at times. Perhaps not intentionally, not with malice, but just by being sad, or tired, or frustrated, or angry, or sleepless, or anxious, or busy, we affect the lives and moods of those closest to us. Many of us are lucky to have a spouse/partner to lean on. I consider myself very lucky in that respect.

I once said to my husband in the context of caregiving, “You don’t know what it’s like.” Probably not a very nice thing to say, because he knows as well as anyone pretty much what I am experiencing from day to day. But what I meant was, he is not feeling the loss of a parent in the way that I am feeling the loss of my mother. All while doing what I can to cater to her varying needs and adjusting to her changing personality and behavior. He is losing her, too, but it’s different for him. He is definitely able to keep a certain distance. What he has to adjust to, instead, is a wife who might laugh at a joke on one day and call it heartless and mean on another. And who complains about a variety of pesky minor health issues that she always attributes to stress. And who slinks off grumpily each weekend to make the obligatory weekend visit to see Mom. And who shows up from time to time from wherever she’s been with puffy eyes because of an impromptu cry. And who can just be plain irritable, fussy, cranky, whatever, at any given time. And who often, more and more these days, has a complicated time with sleep.

Patrick does a fine job with all of this. He uses humor more than anything else to distract me from my tension. It often works quite well. He is also affectionate, and kind, and can become emotional when he witnesses any of my various kinds of suffering. He has a definite soft spot for me, no doubt about it. So sometimes, when I’ve been shlumping around feeling sorry for myself, he’ll take extra long to run an errand and come home with a new purse for me. Really. He recently bought me a summer purse. And after I admired a pair of embellished sandals on the TV show “What Not to Wear,” he came home one day from Target with a pair of similar sandals for me. It’s not like I won’t buy things I like for myself. And it’s not like he’s trying to buy my happiness. These are acts of kindness, little ways of saying, “I was thinking of you.” New things to take my mind off of whatever I might have been thinking about. Nice things to wear or carry that remind me of him.

This past weekend, I experienced something that resembled the panic attacks I used to have in the mid-1990s. I woke up in the middle of the night, my heart pounding. I was hot and agitated. I got out of bed and started walking around. It was Saturday night. Earlier that day, I had seen Mom’s cat, pretty much immobile, and certainly not normal because his pupils were dilated – like saucers, as they say. It was Mom’s birthday, so I was focused on her. For the day, I set aside the cat’s abnormal appearance. And unfortunately, it was hours later, in the middle of the night, that I panicked about his clear need to see a vet and couldn’t get him out of my mind. I looked at a book I have about pet illnesses. I surfed Web sites about “dilated pupils” and “not eating” in cats. That calmed me down a bit, reading message boards about various things that might cause a cat to have these problems. I convinced myself everything would be OK as long as I called the vet to have him checked first thing Monday. I was up from 2:52 a.m. until about 5:30, when I finally fell back to sleep. Of course, now we know Roxy was dying of heart disease. But in the middle of the night, I thought he was suffering strictly because of my neglect.

Patrick and I didn’t wake up until about 9 a.m. – kind of late for us, even on a weekend, because we go to bed fairly early. Patrick said he noticed I hadn’t been in bed for part of the night. I told him I started worrying about Roxy, the cat. “Well, you’ve probably killed him,” he said. “You killed Cookie, and Stoney, and now Roxy. You’re three for three.” Now, that sounds terrible, but it was funny. Cookie was our beloved black lab who died of lymphoma at age 4 in 2003. Stoney is our cat who also lived with Mom, and who died of cancer in December. Patrick can barely talk about Cookie without crying, so when he jokes about her, it is clearly an effort to cut the tension. We got up and made coffee. I started my Sunday morning routine of collecting our clothes, sorting and doing several loads of laundry. I read a little bit of the paper. I knew Patrick had started cooking, and he was using leftover grilled steak from the night before. I wasn’t paying a whole lot of attention. I was making the bed when he called out, “Hey, Emily. Come on.” I went to the kitchen, and he ushered me outside. He had set up our patio table with two big helpings of steak, potatoes and eggs over croissants and tall glasses of orange and cranberry juice mixed together.

Sunday breakfast on the deck, courtesy of Patrick.

Sunday breakfast on the deck, courtesy of Patrick.

We brought out our coffee cups and the paper and ate an al fresco breakfast on a beautiful late spring morning. Patrick was taking care of me after my bad night. We didn’t need to talk anymore about the bad night. We just enjoyed our breakfast. And my heart was all melty as a result of this devoted attention.

Caregiving is hard a lot of the time. It’s a gift, or at least an opportunity, sometimes. It can feel lonely. But I have often thought I am lucky by the Alzheimer’s caregiving standards. Mom isn’t mean to me. She had enough money to live in assisted living for almost two years, and is running out just in time to need the more intense nursing care that will be covered by Medicaid. I have never felt the burden of providing 24-hour care. I have family and friends to talk to when I want to, who help with Mom, or who offer to help, or to listen. My workplace is very flexible for those times when Mom needs immediate attention. I discovered the benefits of blogging.

But I am luckiest of all because I have Patrick by my side, and on my side.

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