The Caregiver Chronicles

Stress & the long distance caregiver

As a rule, people worry more about what they can't see than about what they can.

Julius Caesar 

    

Phone call (flickr creative commons)

Yesterday morning the phone rang. I was still in bed and I didn't hear it and when I got up the message light was blinking, but I didn't notice it. I had just finished breakfast when the phone rang again; it was my sister. The minute I heard her voice, I knew it wasn't good news. "What's wrong?" I asked after I said hello and, like I expected, it was Mom. She was in the hospital with pneumonia - again. The last time, I was there. I could see how she was doing with my own eyes, I could talk to the nurses, and - if I got lucky - I could even talk to her doctors. That time, my sister and I took turns spending the night in Mom's room because she was so sick that she was delirious and we were afraid she'd fall if she got up during the night. And, indeed, she would have with all of the IV's  she was attached to. 

 

 

 

Woman in bed (flickr creative commons)

 I got a sinking feeling in the pit of my stomach and listened as my sister explained what was going on. Pneumonia, as many of you may know, is never good news for anyone and this is particularly true for the elderly. In fact, depending upon the studies you read, the mortality rate for people hospitalized with pneumonia can be as high as 25%. It can be even worse for the elderly. As the following story from The New York Times explains, the prognosis is not good and can be downright grim for elderly people with pneumonia. Those kinds of thoughts went through my head as I listened to my sister, not because I'm a pessimist, but because I know the odds. 

My sister was at home when she got her own call from my mother's live-in caregiver (E.). Mom didn't seem right, E. said. She didn't have a fever and her oxygen levels were reasonable, but she was acting "wonky" for lack of a better word. Right after she ate breakfast, for example, Mom asked when they were going to eat breakfast. My sister conferred with my mom's doctor and he recommended that Mom go to the Emergency Room. My mom is not fond of hospitals! That's putting it mildly, after repeated stays in the hospital during the past decade for orthopedic surgery and illness. She refused to go. However, after my sister had the doctor phone and talk to my dad, Mom reluctantly agreed. At the hospital, an x-ray showed pneumonia and, my sister told me, that's where things stood at the moment. Mom was in the Senior's ER, waiting to get a bed and be admitted to the hospital. 

 

Coffee shop (flickr creative commons)

 

I hung up the phone and walked up the hill to the nearby coffee shop, where my husband was working in the community garden located nearby. I told him what had happened and we sat down over coffee and discussed options. That's where things always get hard. Without more information, I had no idea what to do. We talked about possible options and then went home and waited for more information. After an hour or so, another email came from my sister. Mom's white blood cell count was about 18,000: very high for an elderly person. She was already on IV antibiotics, but that's all she knew. Finally, after another hour or two, I was able to talk to my mom and her nurse. Mom sounded bad; the nurse sounded nice. I didn't find out much, but was able to pass on information about the last time Mom had pneumonia, gave the nurse my number, and hung up and tried to get my mind off what was happening in Room 1124 of a hospital 2,000+ miles away. I failed. I hated to think of my mom in the hospital again, my sister having to do so much, and me helplessly sitting here waiting for information. All of it sucked. Such are the challenges of long distance caregiving. The good news is that millions of others are in the same boat. The bad news is most of us don't have any idea how long the situation will last, when the next emergency will happen, or how we can afford to continue taking time off work, and flying or driving long distances at short notice. 

That was yesterday. Today, the news was better. Mom's white blood cell count was down to 14,000. She didn't sound much better when I spoke to her, but she didn't sound worse either. I managed, I think, to explain to my sister why I'd been so tense the day before - because it's so hard to make decisions about whether to fly out to be with Mom and Dad or not. The truth is that, for now, she's in good hands. The matter of whether she lives or not isn't up to me. That's the hard truth. For now, I'll hang tough and my sister promises to give me a heads up ASAP if anything changes for the worse. Now, if only I could relax. 

What long distance caregiving issues do you grapple with? I'd love to hear your story. 

Finally, a beautiful song that goes out to all long distance caregivers, your loved ones, and - above all - to my mother: may you heal quickly and go home soon.

Note: this is the first in a series on long distance caregiving. (Unless I end up going to Michigan, then long distance caregiving will be on hold for a while.) 

 

Should I stay or should I go: difficult caregiving choices

We must do what we think we cannot.

Eleanor Roosevelt 

 

                Crossing the River Spodden (Photo: Alexander Kapp)

 Caring for aging parents is like crossing a rushing river in a rainstorm. I have no idea why the man above wants to do that. I suspect, however, that he has a choice and doesn't have to cross the river. Caregivers, on the other hand, MUST keep trying to cross the river, no matter how many times they fall in. Eleanor Roosevelt's words aren't so much inspirational, in this context, as they are factual. We must do what we think we cannot because there is no one else to do it. 

The demands of caregiving are daunting at the best of times. Coping with the cognitive and behavioral changes of aging parents adds to the burden. My father and mother both have some cognitive decline. Sometimes, my dad doesn't understand what I'm asking him/telling him and gets angry if I try and explain things. My mom is anxious, has poor short term memory, and repeats herself. Mom can be annoying, however, she is rarely hostile or angry. 

Dad is another story. He is determined to control the things he can control. Unfortunately, he thinks that I'm on that list because I am staying in his house. Just a few days ago, for example he got angry because I accidentally bumped into him and told me in no uncertain terms that this was HIS HOUSE  and no one had a right to bump into him. I tried to apologize and explain it was an accident, but Dad was having none of it. "No one has the right to say they're sorry here!" he yelled and that was that. Being treated unkindly and as if I am a small child, is a bitter pill to swallow. Intentional or not, Dad's behavior is exhausting. Coping isn't easy and, sometimes, I really want to throw in the towel. 

 Take time for yourself, everyone says. Today, I was doing just that when my dad arrived home from visiting Mom. "Are you ready to go?" he asked, expectantly, after calling out hello. I was upstairs at the time, working on this post. "Ready to go?" I repeated stupidly, as I made my way down the stairs.

Mom had phoned earlier, telling me Dad was coming home.; however, I just thought she was informing me. I didn't realize that she meant that he was COMING HOME TO GET ME.  Sigh. I wasn't up for another misunderstanding, so I reluctantly got my stuff together and jumped in the car. When we got to the center, Dad dropped me off and said he'd see me later. So, Mom and I had several quiet hours to chat and watch a movie before Dad came back. And, even though strictly speaking it wasn't "me time," it worked. Mom didn't have too much to say and I had some time to think while she alternated between dozing and watching the movie. 

What did I think about? I thought that I had reached my limit staying here. I also thought about how much I'd miss my mother, who due to her fractured hip is at risk for more falls. Every time I leave, these days, I'm never sure I'll see her alive again. At age 79, the same is true of Dad, even though he is in better health than Mom. I also thought about the fact that I have a 17-year-old-son at home, an overworked husband, and a lonely cat. I miss them and they miss me. I am also not making much money while I'm here. Well, to be honest almost no money. All in all, I need to go home. (Cat, Photo: Ernst Vikne)

But it's hard. The truth is that there is no simple solution; there are only tough decisions. Meanwhile, I need to get through the next 10 days or so, until I can (hopefully) go home. Going home depends upon the results of my mom's next x-ray on the 27th, my mother's mental and physical health, and whether or not my parents have enough money to get Mom the care she needs. I'm keeping my fingers crossed, though, and trying not to beat up on myself about not being able to stay longer. I arrived in Michigan on January 9 and hope to leave on March 1st or 2nd. 50 days plus change is nothing to be ashamed of. 

 

Have you had to make difficult choices between caring for aging parents and your "own" family? If so, what did you do?