The Caregiver Chronicles

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?

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. 

 

Why you can't park aging parents like cars

There's no substitute for being there.

Anonymous

                    Parking lot, circa 1961 (Justin Cozart, flickr)

A few years ago, I bought a book at a yard sale with the title: Raise Kids in Your Spare Time.  The book was printed in the 1960s and had a cheesy cover. I bought it because most people who have raised/are raising children realize that the concept of "raising children in your spare time," is laugh-out-loud funny. The same thing can be true of aging parents. Calling to check in when they are in a medical facility rarely works. This faith in the power of the phone reminds me of the French woman who used to live down the street from us. She would give her kids - two boys ages 10 and 12 - a cell phone and send them out to play, thinking that she could phone them to check in. That system worked to a point. However, one day when she phoned her boys, they were with some other children in the nearby woods starting a fire, even though they told that everything was fine. About an hour after that conversation, her boys and several other kids - including my 8 year old son - were driven home in a police car.  "But, they told me everything was fine," the woman said, as she wept in embarrassment, when the officers knocked on her door.

In the case of aging parents, it's not that they would purposefully lie to us - although they might do that - it's that things adult children would be concerned about might not cross their minds. A friend of mine who has a mother in the early stages of dementia, told me that recently her mother spent three days without power before thinking to tell anyone. Luckily for her, she lives somewhere warm and no real harm was done. Nonetheless, staying with parents in a medical situation can mean the difference between life and death - at one extreme - and discomfort and confusion at the other. So, as I often like to say, you can't just park your aging parent(s) somewhere like a car. Aging parents are human beings with complex needs that are also unpredictable. You don't have to be by their side 24/7 in most cases, but BEING THERE as much as possible is important. When they are left alone, too many things can fall through the cracks. I speak from experience. In the hospital stays that my mom has had in the past two years, there was rarely a space of more than a few days when there wasn't an oversight that could have affected her health, her happiness, or both. None of these oversights were intentional and in hindsight it is easy to see how they happened. The truth is that my mom is often confused when in the hospital: she was delirious when she had pneumonia, she is in pain and confused from pain medication and mild dementia now. My dad also has limitations and, more importantly, both of my parents come from the generation where you don't question the doctor or worry about what is happening in a medical facility. Trust, not careful observation, is the rule of thumb for them. And, given the fact that when my mother is in the hospital or another facility, both of my parents are anxious and tired, it's no surprise that they can't be the ones on the front line making sure that everything is OK. That's not to say that nurses and other staff aren't doing the best they can. In my experience, they do the best they can, but - if no one tells them otherwise - they may assume that my parents can make complex decisions that they can't or assume that they will bring problems to their attention that they don't. 

Late last week, for example, I accidently discovered that my mom hadn't been given one of her medications for several days. The oversight wasn't immediately life-threatening; however, if she had been without the medication for much longer she might have become confused enough to forget that she couldn't walk: a disastrous possibilityfor her hip fracture. Once back on this medication, she gradually became less anxious and, within several days, was back to "normal."

  Early this week, I noticed a large drop in her blood pressure that didn't make sense and brought it to the attention of my mom's nurse. The nurse retook it and it was actually high, not low, and she called the doctor and he authorized her to give my mother another blood pressure pill and within an hour her blood pressure had returned to normal.

Yesterday morning I had just sat down to breakfast when my cell rang. I picked it up and my sister was on the other end. "Surprise," she said. "Surprise?" I repeated, with a frown. She was with Mom at the Rehab Center and surprises are rarely good ones when it comes to Mom. Guess what, she continued, Mom's going for her x-ray this morning. Mom had been scheduled for her next x-ray on February 26 - or so we thought - but when my sister looked at the date and looked at her calendar, she discovered that there was no February 26 on a weekday and that Mom's x-ray was in fact that morning - January 26. So Dad and I quickly finished breakfast and then he dropped me off at the doctor's office because he had physical therapy and he joined us later.

Meanwhile, Mom was having a mini-meltdown because, as with most elderly people, surprises alarming. But she was calmed down by the time she got to the doctor's office and it turned out for the best that the x-ray was sooner rather than later. The doctor said that there hadn't been much change since the last x-ray two weeks earlier and he said that my Mom should still be non-weight bearing and he would see her again in a month and he recommended that she stay in the Rehab Center until then. 

And so, when I finish writing this post, I'll be headed back to the Rehab Center in time to hear what the facility doctor has to say and help Mom with the little things that can make the difference between a bare-bones stay at a facility and a little more comfort and - hopefully - a sense of safety. 

 

The Waiting Game - the stress of not knowing

Waiting is painful. Forgetting is painful. But not knowing what to do is the worst kind of suffering.

Paulo Coelho  

I leave tomorrow morning for Ypsilanti, Michigan to help out with my mom who is in a Rehab Center there after having fractured her hip about 10 days ago. This morning I went out to brunch with one of my best friends to see her before I go, especially since I'm not sure when I'll be back. We had a great time, despite the fact that I am be worried about my mom who doesn't sound good and is in a lot of pain from her hip fracture. It was good to get out and breath some fresh air and get away from the phone and the computer. I don't know about you, but when I'm worried I have a tendency to do Google searches that are rarely reassuring. 

When I got home there was a message to call my sister who is, much of the time, the main caregiver. "Hi, Angela," my sister said, when she answered the phone in that tone of voice that you know doesn't bode well. Sure enough, Mom had taken a turn for the worse while I was out. Her blood pressure had dropped to 72/45 and her oxygen level was only 90 or 91 percent - exactly the same scenario as last January when she ended up in the hospital with pneumonia.

This time, things are complicated by the fact that Mom is on even more pain meds than last January (I think) because of the pain from her hip fracture. She is on morphine and percocet, both of which are pain medications associated with depressed breathing rates and immune system suppression: a formula for pneumonia in anyone, but especially for my mother who has had pneumonia three times in the past two years. Morphine is the worst offender and up until earlier today, Mom was on a lot of morphine because she is someone who is in chronic pain and, to be honest, is addicted to pain medicines. She did not go out and addict herself, but over the years her severe arthritis has been treated by so many doctors and she has been on so many different pain meds, that she has arrived at the same end point. None of which is good news when it comes to balancing pain management with not getting pneumonia.

Meanwhile, both my sister and I spoke with my mother's nurse, who seemed to be doing everything she could. Yes, she told us, they were concerned about my mom's status and the doctor had taken her off of morphine and her blood pressure medications until she was stabilized. Meanwhile, I tried to talk to my mom but she said she didn't feel like talking and Dad couldn't talk to me because, "he's doing things for me." And then my sister phoned back and said that Mom's blood pressure was up and, hopefully, her breathing was a bit better. An x-ray is scheduled for later tonight and, for now, there's not much I can do except hang tight and wait for more news. And that can be hell, as anyone who has waited for medical news knows. Meanwhile, I have to pack and take care of loose ends before leaving. And all the time in the back of my mind is the fact that, for the elderly, pneumonia is a killer. Seniors may have a heart condition or cancer or any of a range of conditions but it's pneumonia that gets them in the end.  

As for me and my waiting, the best thing I can do is to trust that the nurses and doctor are doing the best they can. Mom is in one of the best facilities in Washtenaw County, which is saying something because it is a county with more nurses and doctors per capita than most. And, besides, worrying isn't going to help change any outcome. Pema Chodron knows that. I have packed her bestselling book, When Things Fall Apart, in my carry-on and I am hopeful that reading it on the plane will help me put things in perspective. Besides, when I'm up in the air there really won't be anything I can do. I won't even be able to talk to anyone because I'm waiting to buy a cell phone until I get to Michigan. 

But that's all in the future. Right now, today, this moment, I can hope. I can hope that the nurses and the doctor at the nursing home will stabilize my mom's condition. I can hope that when I land in Detroit tomorrow, things will be better. If they're not, then nothing will have been harmed by hope. As Buddhist Monk Thich Nhat Hanh said, "Hope is important because it can make the present moment less difficult to bear." Good advice. Now, I need to follow it. Wish me luck. 

When was the last time you had to wait for medical news? How did you handle the stress?