caregiving

The view from here

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I’m not a fan of winter, particularly, but I don’t hate it anymore. My perspective has changed. This is a good thing cuz where I live, winter lasts a looooong time. We still have snow on the ground here. It snowed as recently as yesterday. Spring will come, but it’ll be a while yet before it’s warm enough for me to enjoy being outside.

I don’t like to be cold, so there’s that, but the biggest reason I don’t like winter is that I don’t get to ride my bike outside for 7-8 months. In the past, that meant I didn’t get to ride at all for nearly 2/3 of the year. The remaining four, or five months were wonderful, but soon enough it was time again to hang up the bike for the winter, which made me so so sad, and ornery, and fat.

When I was younger, I just didn’t exercise for 8 months, and that seemed to work out okay. I bowled in the winter, and that was fun, if not particularly healthy, given the number of cigarettes I smoked and the number of beers I drank in 2 hours once a week. As I got older, however, it became apparent pretty quickly that those halcyon days of keeping the weight off without exercise in the winter were over.

So, I went to the gym, and if it wasn’t cold enough to freeze body parts, I walked in the evenings. I bought a trainer to ride my bike indoors, and for a couple of years, I was pretty good about sticking with it, despite the fact that it is quite simply the most boring activity on the planet and has nothing to do with why I love to ride my bike.

Then the plague happened, and two things changed everything for me really quickly: 1) I was working from home full-time, and 2) the government sent me some stimulus money. Working from home gave me extra time, and the money allowed me to purchase a “smart” trainer that connects to my computer and the internet and responds to programs that make it seem like I’m riding on a real route.

Game. Changer.

So I tried a bunch of different programs, and the one I stuck with is Zwift. I bought the trainer in September of 2020 and when winter came that year, I found I didn’t care! I could still ride and enjoy it, and I didn’t have to go out in the snow everyday for work! Now I’m back in the office 3 days a week, but I still manage to ride 4 or 5 days a week.

So I have been thinking about how that one thing changed my perspective so completely. It has inspired me to think about other things I can change within the frame of my work schedule and caregiving/housekeeping responsibilities so that I feel less trapped. When I get sad and ornery now it’s mostly because I miss the freedom I had before I moved in with mom 10 years ago. I never dreamed I would be there this long, and it’s causing me to chafe a little (sometimes a lot) at the bonds of the commitment I’ve made.

I often feel I have no time to myself, and to some extent that’s true – I certainly don’t have the time I did when I lived alone. However, I laid out a schedule a week or so ago, and I discovered that if I make a couple of small adjustments, there is some more free time to be found in my days. So right there, my perspective changed, and already this week I feel lighter and freer. I can’t travel, and I miss that, but being able to fit in other things that I’ve been missing has helped change my frame of mind.

Perspective is everything. Byron Katie suggests that for every thought we have, we question it. Is that true? Who would I be if it’s not true? Changing my perspective about things I take for granted – I don’t have time, I don’t have the freedom, I don’t have whatever I feel I need – makes me wonder what else I’ve been perceiving incorrectly: people, the town I live in, the work I do.

Everything, maybe. It’s worth thinking about.

How about you? What can you try to see differently?

All by myself

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Capture

A week ago I was just beginning a 4-day weekend and I was really looking forward to it!  I had taken Friday off, for lots of reasons, not the least of which is that I hate Valentine’s Day, and Acme Health Services was closed on Monday, President’s Day in the US, so at this time last week I was reveling in the thought of 4 whole days unencumbered by plans of any kind. Yippee!

Thursday night I started to feel ucky, but I chalked it up to fatigue following 3 grueling weeks at work trying to finish a project, and went to bed early.

The first thing I did upon waking Friday morning was expel the entire contents of my digestive system in grand fashion in a matter of moments. It was intense. I was one sick puppy. I hardly ever get sick, but there was no denying that this was not a passing thing, no matter how much I wished for that to be true. I spent all of that day and most of Saturday in bed, not even considering getting up or ever putting anything solid in my mouth again.

By Sunday I was pretty good, though, so I kind of hung out around the house, reading mostly, and being careful about what I ate. I still had Monday, so though I was bummed about the weekend so far, I wasn’t devastated. I figured it wasn’t a total loss…yet.

The first thing mom said to me early Monday morning was, “I’m going to throw up.” So much for “the last day.” It was a long day, but she seemed pretty stabilized by the time I was ready to go to bed that night, so I went upstairs and slept until I heard a loud crash downstairs. I rushed down to find mom laying on the floor in the den, passed out cold. She had gotten up to go to the bathroom, got dizzy, and down she went.

She wasn’t able to walk very well when she came to, but working together we managed to get her back in bed, and settled in again, but leaving her to manage the bathroom on her own again was not an option, so I settled in on a chair nearby and dozed. I got a couple of hours sleep, but I was exhausted and I didn’t know how mom would be that next day, so I emailed my supervisor to let her know I wouldn’t be in to work on Tuesday.

Mom is nothing if not resilient, though, and throughout the next day she did very well, even ate a couple of tiny meals, and slept through the night (making it to the bathroom without incident every time) and I was able to return to work yesterday. Today she’s close to 100%. Very impressive for almost 88.

At any rate, I had a lot of downtime on Sunday and Monday and I was participating in an online summit for people who are (Myers-Briggs Type) INFJ and INFP, so I was able to catch up on a lot of the speakers I had missed over the week long event, and more importantly, I had time to process all of the information. As a result, I realized some important things about why I struggle so much in this situation with mom.

I tested as an INFJ about a year ago, and reading about the personality type helped me understand a lot of things about myself in a new light. That’s fodder for another post some time. What was important about this weekend was that in listening to some of the conversations with the speakers (who were all INF – introvert – types) I was given a nudge about something I hadn’t considered before, and that was my mother’s personality type and why our differences made it difficult for me on a day-to-day basis to live with her again.

I have said before that if you spent years going around the globe interviewing every single person on the planet, you would not be able to find two people more opposite in every way than me and my mother. People laugh when I say that, and that’s what I intend, but it’s really true. I’ve always understood that, but I didn’t really fully understand why, or in what specific ways we were so different.

Having said that, we have always connected very well in some ways, also, and that’s made it possible to continue our karmic dance together throughout my life, and especially now. What’s been difficult these past few years, I realized this weekend, is that I haven’t been able to do for myself the things I need to do to be sane and happy, because I’ve been trying to keep her happy, and in doing that, I lose out.

What makes her happy is interacting with people. She HATES to be alone. So, for the past couple of years, since she’s not able to leave the house, I’m her only source of interaction. I’m gone at work all day, so I try to limit the amount of time I’m away from home in the evenings or on weekends, and when I’m home, we’re together. ALWAYS.

On the weekends, I have a few hours in the morning alone before she gets up, but that’s it. Herein lies the crux of my problem, and this is what I realized this weekend in a way I hadn’t fully grasped before; at least what the consequences of that situation are:

I am hardly ever ALONE.

I only really value two things in life: solitude and freedom. True since I was a little tiny person. I was an only child, and I reveled in it. I was hardly ever lonely. I played up in my room, I read, I wrote stories, I sang. 50 years later it’s still true. I love to be alone. The things I like to do are solitary pursuits. I lived alone for 37+ years. I like to be with people, and sometimes I was lonely, but I had friends I did things with often enough. Even if I had to be alone and didn’t want to be, though, it was worth it. I always chose solitude over society, freedom over stasis.

ALWAYS. And I always will.

Now I have almost no solitude. I have swapped what I need to be whole and healthy for what my mother needs to be whole and healthy. I did it most of my young life and I’m doing it again now.  No wonder I’m utterly exhausted and feeling hopeless most of the time. The first 5 years I lived with mom she was more independent and so was I. It’s really only the last couple of years that this is an issue.

I don’t mind the care-giving role. That’s not it. I thought it was, but in really feeling about it, it’s not. I am a natural caregiver. I have filled that role in my family all my life and in reality I’m fine with it. I like to be of use. But the “no solitude” thing is another sack of cats, and I don’t know what I’m going to do about that. I don’t know if there is anything to be done. I think that train has left the station. Monday night made that pretty clear to me. It’s only going to get worse until she dies, and honestly, that could be years from now.

The most important thing I realized this weekend, though, was that this is my problem, not hers. It’s a choice I made at some point, and it’s not her fault that she’s wired differently than I am. It’s not her fault. She’s just living her life, taking care of herself in the best way she can. Asking for what she needs. It’s my choice to give that to her, and it’s not her fault, any more than it’s my fault that it’s hard for me. We just are who we are and who we are is not alike.

Okay, so now what?

Now I need to find a better way to make it alright for me. I have been trying to take care of myself – eating properly, exercise, meditation – but nothing seems like it’s enough. I keep stumbling, feeling like a failure, but now I know why, so I hope I’ll be able to walk a little straighter going forward. Now that I know exactly what the problem is, I can zero in on a solution, or at the very least accept that there is no solution, so I can stop feeling like I’m lacking all the time.

So the weekend was worthwhile, after all, though I would not have said that at any point before Wednesday. And honestly, I hope this weekend is better. Another “growth” weekend like the last one just might do me in!

 

In ourselves

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It is not in the stars

One of my favorite parts of my job is doing the social media posts for Acme Health Services and our affiliate organizations, one of which is a hospice volunteer group. In that capacity, I spend a lot of time wandering around the web looking for content that might be meaningful to our followers. For the hospice page I search for articles about grief, of course, but also about all aspects of caregiving, cuz presumably the folks who follow us are probably now, or have been in the past, caregivers to a loved one.

As a caregiver myself these last 7 years, I find these articles useful as well. There are a lot of us out there: middle-aged people caring for elderly parents or other family members in some capacity, and there is a lot of good information about staying sane and healthy available on the internet, thankfully. I live in a small town in a relatively sparsely populated area, so it’s a real boon to be able to connect with folks in other places who are going through the same thing I am.

This week I stumbled across the blog of a woman about the same age as me who is living with and caring for her 80-something mother, who has dementia. We are different in that my mother is still pretty sharp. For that I’m grateful. My dad had dementia, and that was a difficult road to travel.

In many other ways, however, we are scarily alike. This blogger has never married, and never had children. She works full-time outside her home. Other than cats, this is essentially her first experience as a live-in,  day-to-day, hour-to-hour caregiver for another human being. Same for me – all of it – so the similarities in our current circumstances, and our lives in general, really struck me.

I encounter people all the time who are surprised that I’ve stuck with mom this long, or that I agreed to do this to begin with. Sometimes I’m amazed myself, but here I am, by choice, doing the best I can for mom and trying to take good care of myself along the way, every hour of every day. This has been my life for 7 years, and it will continue to be my life until one of us takes her last breath.

It’s been up and down, for sure, and I’ve struggled mightily at times. It hasn’t always been an uplifting story and it remains to be seen whether it’ll turn out to have a happy ending. Many times I’ve felt that I couldn’t go on, and yet I did, and I will, to the end, whatever and whenever that may be, for no other reason than it is the right thing to do.

This blogger put it this way: What else am I going to do? Yes! Exactly.

What else is there to do in a life that is more meaningful than offering another human being – especially a family member – the love and care every human being deserves when it’s needed? The first 50 years of my life I thought a lot about how I could live a meaningful life. What do I have to offer the world? Do I matter? Why am I here?

Now I know. I don’t think about any of that any more. This is what I have to offer. This is why I am here. As it turns out, a life-long failure at most everything by which society measures people, finally I know I belong here and I’m a success. I matter to my mother, and perhaps my story matters to someone else, as that blogger has validated my experience.

Really, what could I be doing right now that would matter more? What else could I have been doing in the last 7 years that would have transformed me in the way this experience has? I have been forced to become so much more than I was, even so much more than I thought I could be. I still have a long way to go, but I am a much better person than I was when I moved in here. Not only have I become responsible for the care of another human being – which is not something I ever wanted – but I have become responsible for myself in a way I never was before.

This has been a win for both of us. I have benefitted from this experience as least as much as my mother, and our relationship, which was turbulent for most of my life, has been repaired. That’s no small thing. The irony that she and I would be the two left standing in our family and would be required to rely on each other this much at the end is almost too much to be believed given our history, except that it’s exactly the way the universe works, and it’s clear to me now that it was always going to be this way. This was where we’ve been headed all along.

That’s about as close as I’ll come to believing in destiny. Really, it could have gone either way. I could have said “no” at any point, or I could have given into the resentment that rears its ugly head every now and again, especially when I compare my life to that of my friends. I still could – it ain’t over yet. The end could be tomorrow or it could be another 7 years. The future is uncertain.

For now, though, I’m resting in the knowledge that I’ve made it this far. That’s all. I’m grateful for that, and my wish for all of us on this caregiving journey is simply that we can rest easy knowing that we’re right where we need to be, and that we’re doing the best thing we could be doing at this time.

It matters.

Where the light peeks through

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This ruined house - Shikibu
Everything is relative and perspective is what makes the difference. My mother dislikes sunny days. I love them. She likes cold weather, the hotter the better for me. I read fiction, mostly. I have a friend who reads non-fiction almost exclusively. Cats for me, dogs for a friend.

We’re all different and what matters to me may or may not matter to you. Doesn’t mean either of us is more or less than the other, just that we’re not the same. Though different, we’re all deserving of love and consideration. What matters is that we remain true to ourselves and do what’s right and best for us in our own lives.

You can’t see life from my perspective, and I can’t see it from yours. You are upset about the wind. I’m rejoicing in the moonlight. I can say to you, “Forget about the wind! Look at the moon!” You say to me, “Are you crazy? Who cares about the moon? I’m freezing!”

Both things are present; both are true. Which is the “best” way to think about that situation?

It’s all in the perspective. We are each of us entitled to our view of the world. No one sees things in exactly the same way I do. I can tell you what I think and feel, and you can share your perspective with me, but neither of us can get inside the other’s head and really know what the view is like from there.

This is something I’ve struggled with all of my life, especially with my mother. When I was young, I simply adopted her view of the world in order to be accepted. I learned early on that she wasn’t at all interested in my view, and if I made the mistake of sharing my thoughts or feelings about anything, she was quick to explain all the ways in which my view was incorrect. Period.

I was just wrong. All the time. So I simply dissolved into an extension of her. It took a long time and therapy to distinguish myself finally from her, and to believe that the way in which I perceived things, including myself, was equally as true as her view. I’m not wrong, just different.

We’re not the same person. She’s not wrong, and neither am I.

Living with her again these last 7 years has certainly put this principle to the test. It’s a challenge everyday for each of us to accept the other as she is. There is lots of common ground, and we meet there and enjoy each other’s company most of the time.

Every so often, though, we unintentionally prod old bruises and one of us is tempted to think of the other as the villain and lash out in retaliation. Suddenly I’m 6 years old again, only now I’m not afraid to speak up for myself. I have to remember, though, that she’s not a villain; she is simply a human being doing the best she knows how to do – always was – and that ultimately she wants the same things I do: to be loved, to feel safe, and to be happy.

When I see her that way, with compassion, everything changes and we’re back on common ground again. We are the same, and we are different. Both things are true.

Nobody’s wrong, and no one is to blame. We’re different, and we’re both okay as we are.

We’re all okay, just as we are. I feel the wind, you see the moon.

It’s all good.