It was my intention to write a new blog post at least once a month. April was my last post, and it is now October, six months later. Like most things these days, I didn’t meet my writing goal. I didn’t realize that caregiving would alter almost everything in my life: friendships, travel, work, money, housework, and even simple goals like writing a blog post once a month.

It’s not that I don’t have time. I sort of do. I work three days a week–Tuesdays, Wednesdays, and Thursdays, sometimes Mondays, too–yet when I work, it’s usually 10-12 hour shifts. When I finally get home, I make dinner. By the time we’re finished eating, it’s time to go to bed to wake up the next morning and do it all over again.

But that’s just three days. What happens on the other four?

On my weekdays off, I am usually taking Tony to his various appointments, or running him to the grocery store, or wherever else he needs to go. I’m often doing his laundry, or trying to pick up around the house a bit. I have a second job where I review products for a major retailer, so I have to write my reviews and take photos. I’m usually behind on that and trying to catch up.

On the weekends, I’m usually with my mother, who lives two hours away. I take my computer with me, intending to write or catch up on my client notes for work, but I don’t. I’m often doing housework for her, or taking her places, or getting food, or just talking to her. She likes to talk, as she is alone a lot. And I like to talk to her, too.

Yet, with all of this going on, I somewhat ridiculously still try to make plans and goals. One is writing this blog. I was so excited about it when I created it. I wanted to connect with others who were also caregiving. I wanted to share my story in hopes that it resonated with someone else. Caregiving can be lonely. Connecting with others who have similar experiences makes it feel a bit less lonely.

Today I am sitting in an auto mechanic’s shop, waiting. I don’t have someone who can come and pick me up while I leave my car to be repaired, so I have about three hours of nothing ahead of me. (I’m being hopeful–it might take longer.) This gives me the opportunity to write, something that gives me great pleasure.

To catch up on the two people I care for, Tony is holding relatively steady, though his memory is definitely declining. By “holding relatively steady” I mean that he has not progressed enough to be put into a care facility yet. He can stay home alone for several hours at a time, he can still fix his food, though that is getting harder and he forgets he has leftovers, or frozen meals in the freezer, so he eats the same sandwich and fruit pretty much every day. I’m okay with that. He’s eating, and in Alzheimer’s world, that’s a big deal.

Though most of our interactions are still okay, we sometimes get on each other’s nerves. My temper is short these days because I’m always tired. His emotions are all over the place and he can no longer regulate them as needed. He pouts a lot, and is highly sensitive to most things I say, regardless of how I say them. He is also losing his hearing, so he misunderstands what I say and I’m not yet used to adjusting my voice tone and level to meet his needs. So when I raise my voice so he can hear me, he thinks I’m yelling at him.

Most days, I feel like I can’t win.

Mom will be celebrating her 95th birthday in one week. She is also holding her own, and is still home alone for most of the time, save twice a day visits from those who check in on her. I still see her on the weekends, though one of my brothers has started going down once or twice a month, which gives me a much-needed break to be home with Tony.

Mom fell a couple of weeks ago, but did not break anything. She is now starting to “see” people. The day before she fell, she saw and spoke to her sister Jane, though Jane died in 2019. Jane was her everything, and always took care of her when she was a child, and was her closest friend in adulthood. She was very shaken up after seeing her. Mom said that it was so real that she could feel her hand in hers, and heard very clearly Jane asking her if she was okay. She was afraid to tell anyone about the experience for fear that we would think she is crazy. I assured her that I don’t think that she is crazy, that I firmly believe the ones we love and lost are still with us. It does worry me, though, because I know that when people start seeing and hearing people who aren’t there, the end is likely near. And this type of experience is increasing for her. She often hears people talking in other rooms, or sees a woman standing in her bedroom. Last week, she saw a cow hanging from a telephone pole, and described the scene with no concern whatsoever. Fortunately, her visions don’t scare her, though they do worry me.

As for me, I am good some days, and my nervous system is shot on others. That’s the hardest part for me: keeping my nervous system regulated. As a counselor, I help people regulate their emotions every day, but I often can’t regulate my own. Though I love my job, I wish I weren’t working right now. I wish I could afford to quit until I am no longer caring for Tony and Mom. But I can’t afford to do that, so I have to keep working. If I weren’t working, I would make it a priority to carve out an hour in the morning for myself to meditate and do yoga. Then carve out some time in the evening to reflect on the day and meditate again. That would be living the dream for me: having time. It’s interesting to me how little I want right now, that “time” is at the top of my wish list, not travel, or clothes, or a new car. It’s time to take care of myself while I take care of others. Unfortunately, that is a luxury that I do not have at this time.

Taking care of others’ emotions when you don’t have time to regulate your own is challenging, to say the least. Most days I’m okay, as I have wonderful clients who have been with me for years. Even then, it can be exhausting. Yesterday, I saw seven clients in a row without a break, and didn’t get home until 8:00 at night. On days like that, I don’t want to speak to anyone when I get home. I don’t want to do anything but lock myself in my room with my dogs and disappear. I’m an introvert, so I recharge by being by myself. But Tony is an extrovert, and recharges by being with people. And because he’s been alone for most of the day (my son is home to watch him, but they often don’t interact much) he’s ready to talk when I get home, and I am ready to retreat. Because of this, neither one of us ends up getting what we need. Last night I just sat in my room and cried. It’s all I could do.

I am currently working on loosening my grip on attachment: attachment to people, attachment to things. I just read the wonderful book “When Things Fall Apart” by Pema Chödrön, and found great solace in some of the Buddhist teachings she discusses. I have seen both my mother and grandmother live their lives completely attached to things and people. My grandmother didn’t want to die because she was too worried about what was going to happen to her house and her things. My mother won’t let go of anything, even the things she no longer needs. So I grew up believing that you are supposed to hold on to everything, and that is not healthy. Attachment creates not only the obvious (clutter) but also stress. When you are so attached that you can’t let go, stress and anxiety can result.

Over the years, I have worked with clients who were so afraid of their parents dying that they lived with debilitating anxiety and couldn’t fully enjoy the relationships that they were so afraid of losing. I have tried desperately to “unlearn” what I learned from my mother: to hold on to everything, including people. It’s not healthy, and in clinging so tightly, it is hard to see the beauty in the moments you have. Life is fragile; every moment is a gift. But if you are anxious about losing those you love or the things that are around you, the anxiety can negate the joy of presence. Of moments. Of time.

When it comes to caregiving, I think I have developed a healthy concept of loss. I know I will lose Tony and Mom. I am about to lose my 15-and-a-half-year-old dog, Bugsy. Though these losses will bring me great sorrow, I am not obsessed with the impending losses. I am served so much better to enjoy the moments that I do have left with them, what is present in front of me. That doesn’t lessen my potential for grief, but increases my ability to experience joy. When it is time to let go, I will know that I enjoyed my time with them as fully as I could, without the specter of anxiety.

As for the exhaustion, I’m working on that. Not sure I’ll find a solution, given my work and caregiving, but I’m not giving up trying to find a way to regulate my emotions instead of completely burning out. I’ll keep you posted on that.

Until next time, care well, especially for yourself.

Amanda