The Caregiver Chronicles

Laughing when you'd rather cry - what else can a caregiver do?

A day without laughter is a day wasted.

Charlie Chaplin

                          Laughing couple (Jack Delano photo)

Sometimes you have to laugh or you'll cry is an old saying with a lot of truth in it, at least when it comes to caregiving and aging parents. Yesterday was a day when I could have used some laughter. It wasn't easy to laugh at the time, but today I can see the black humor in much of what happened. Besides, when I think about it in a whining bleak kind of way - whingeing as my friend Cathy would say - it is really too much. 

When I got up yesterday morning, the first thing I saw when I came downstairs was my dad sitting in his reclining chair so sound asleep that his coffee cup was hanging from his hand as if he'd fallen asleep in mid-sip. In fact, he was so sound asleep that I stood there watching him to make sure he was breathing. Then I went into the kitchen to make coffee for myself and eventually he wandered in. Not in a good mood. In fact, in a miserable mood. Not that he doesn't have a right to that, but it complicates my already complicated life. In his not very good mood, he proceeded to lecture me on how to turn off the tap in the kitchen sink so it wouldn't drip and point out non-existent water on the floor for me to clean up. (Photo from Moon, Stars & Paper)

I survived the morning and went out to do errands, including scanning photos to send to my cousin whose mother, my mother's oldest sister, is slowly dying at her home in Kentucky. The nurse had assured the family that Aunt Kathleen wouldn't last long after she quit eating and drinking, but it's been more than a week now and she is hanging on. My cousin is in no hurry to see her mother die, but watching the process is harder than you think it will be. Much harder. I scanned the photos, then ran over to Whole Foods to pick up some oregano oil for a cold I am trying to nip in the bud. I phoned Dad on my cell and told him I'd be home as soon as I could get a cab and finally arrived - out of breath and late.  

I could tell Dad was annoyed because he didn't say anything on the drive out to the rehab centre. When we got out of the car, he picked up an L.L. Bean bag from the back seat. "What's that?" I asked. "That picture," he said and, right away I thought, oh no. He'd been talking about bringing a studio portrait of my mother taken about 40 years ago to show everyone at the rehab center how beautiful she used to be. I knew that Mom was not going to be pleased. She hated to see anything from the house in her room, either because she was afraid it would get broken or lost or because she didn't want to see her temporary abode as anything like HOME. Sure enough, she took one look at the photo and told my dad, "You're upsetting me."  I could see him deflate like a balloon and then re-inflate with anger. "You're not happy!?!"  he demanded. "I thought you'd be happy!" I fled and put the yogurt I'd bought for Mom away in the patients' fridge.

Back in the room, Dad was threatening to throw the picture away or - better yet - put it under the tires of the car and run over it. I tried to intervene. "And, why," he said, in a loud angry voice directed at me, "didn't you ask me to pick you up instead of getting a cab?" Meanwhile, Mom was trying to placate Dad, telling him that she was "just surprised," but Dad was having none of it and stomped out, taking the picture with him. "Oh dear," Mom said, as he was leaving, "you're upsetting me, you're really upsetting me." I phoned my sister for moral support and was so annoyed with what she had to say that I hung up, even though the minute I did it I knew it was a BIG MISTAKE. Sigh.

As they say, it never rains . . . Dad returned and I left my parents alone to patch things up and went out to the main desk where there are three people stationed in wheelchairs. When Mom first arrived, there was only one: a petite white-headed woman named Janet who likes to color and wears a bright yellow armband with the words, "Fall Risk" printed on it. A gaunt old man also sits there. He can't feed himself and talks a lot about the fields and going "over thar." The latest arrival is a woman who I hadn't seen before. "Sir, sir," she said to me, as I was standing there, "can you please help me?Please help me, sir, please help me," she begged. But "civilians" aren't allowed to help residents so I went into the lobby and phoned my husband.

 A good laugh would have helped about then, but, unfortunately, I wasn't in the mood. I wasn't able to think about my favorite scene from Mrs. Doubtfire, the one where Robin Williams sets his fake breasts on fire and puts the fire out with saucepan lids. I also couldn't think of any jokes - not that I ever can - or the funny picture of an ostrich that I have saved on my laptop. So instead of laughing, I reluctantly went back to the room where my dad was putting muscle rub on my mom's sore knees. "See," she said, "your father is kindly putting rub on my legs." And, for the moment, the storm had passed. My sister was still mad and my head hurt and I badly wanted a drink, but I settled for my parents cease fire. 

Today, thankfully, I am able to laugh. Sometimes laughing is all you can do, especially when things aren't funny. Well, those are my thoughts anyway. As my 17-year-old son would say, "pretty random." True, but I have a friend who I like to get together with and drink coffee and laugh while we trade caregiving stories. I think she would approve. Recently, her mother who has mild dementia sat for three days in her house with the power off before thinking of phoning anyone. Not funny really. But .... Still.  (The mom was fine, just confused and slightly cold.) In case you find all of this hardhearted, I am well aware that some day I will be the person sound asleep in the reclining chair. Only I'll be snoring. 

 

When elderly couples are separated by health issues

What is the opposite of two? A lonely me, a lonely you.

Richard Wilbur

Every morning one of the first things I hear when I get up, is my father talking on the phone to my mother. "Good morning, dear," he always begins these conversations and he ends them with "I love you." My parents have been married nearly 60 years and I find this sense of devotion very moving. Right now, my mother is in a Rehab Center and my parents have experienced three lengthy medical separations during the past year. That doesn't mean they don't see each other because my father goes up to visit my mom every day unless he is truly sick or in extreme pain with his back. What it means is that they don't sleep in the same bed or, usually, eat meals together or see each other the first thing in the morning or the last thing at night. Not a small thing.

When I arrived on January 9, the Christmas tree was still up and the Christmas cards were on the mantle. Dad is keeping the tree up, he said, so that when Mom comes home everything will be like she left it. That's because when she fell and fractured her hip on December 29, the tree was up and Christmas cards were still straggling in. Last night, however, Dad said that, "maybe I'll take the tree down." That's because earlier in the day, the doctor told my parents that she'd be in the Rehab Center at least another month. I had tried to prepare my dad for this possibility, but he continued to remain overly optimistic about when my mother would return until yesterday. So far, he hasn't taken the tree down and I don't plan to encourage him to. If it gives him hope, that's okay. If it depresses him, that's okay too and then he can take it down.

Then there are Dad's dreams. This morning, he said, Mom woke him up at 7 a.m. I thought he meant that Mom had phoned. No, he said, it was her voice outside the bedroom door, saying "Warren, get up."  But, of course, she wasn't there: at least not physically. Her voice - a voice he has listened to for at least 60 years - was there and the empty place in the bed was there and the empty place at the dining room table that neither Dad nor I felt comfortable sitting at. 

 This connection between elderly married couples is no news to researchers. Studies of couples who have been married a long time, shows that the connection between the health of each person is intimately connected. One of the saddest situations that elderly couples face, is when the health problems of one person require a different living arrangement than the other or when both people cannot afford to live in assisted living, required by only one partner. This possibility is a looming one for my parents. We (the children) are doing all we can to help them stay together. Someday, however, our efforts may not be enough and, inevitably, the day will come when one of our parents dies. We try not to think about that too much in the day-to-day work of caregiving, but it is the elephant in the room that no one talks about too much, but that everyone realizes is there. 

  

Enjoy Joe Cocker's take on "Ain't no Sunshine When She's Gone." My mom isn't "a young thing" but my dad would agree with the song's sentiments.