Tuesday, March 20, 2012

Solitary confinement

This post has been running through my head since the beginning, but I've hesitated to write it. More than anything else I've written, it sounds whiny and selfish. In fact, it is whiny and selfish. But this blog is meant to be a way to try to purge my mind of the negative thoughts and feelings that keep me from dealing with things as they are. I can't say that's actually worked; but still, I write.

I'm a solitary person by nature, and possibly by nurture. I don't cope well with constant interaction with other people. I need a lot more alone time than most people I know. Which isn't to say I don't feel lonely. I do, quite often. I've never really found the right balance of solitude and companionship in my life. But I can't think of a lonelier time than the past fifteen weeks.

That first week in the hospital, while Mom was in ICU, seemed to last forever. I sat in Mom's room from the time visiting hours began at ten o'clock until near the end of the day shift, usually between five to seven o'clock. Sometimes Mom knew I was there, sometimes probably not. Mostly I was there to get what information I could while the doctors were there, and to answer their questions, since Mom couldn't answer them herself. Depending on how busy the unit was each day, and how proactive the nurse assigned to Mom was, there would also be many visits from her or her assistants. I found myself impatient for the arrival of some specialist with questions, a new flock of interns trailing after their mentors doing daily rounds, or the nurse coming in to check something. They all seemed to me like visitors from the world outside Mom's room, and I clung to those moments of contact. Going to and from the hospital, I felt like I was traveling in a bubble, separated from everyone around me. When I got home, I had people to update, on the phone and by email; but mostly they felt like just one more item on the to-do list. My only sense of companionship came from Twitter, of all places. Using replies to keep the conversation mostly among mutual friends, I cast out my pleas for a lifeline or two. And these friends, some of whom I've yet to meet in person, kept me afloat.

The second week was worse. Mom was moved to the telemetry unit, a step down from ICU in the intensiveness of care. There were fewer doctors asking or answering questions, fewer visits from the nurse, and no flocks of interns. I felt abandoned. That's actually the word I used in my head. Abandoned. I was in Mom's room fewer hours, since I had to go back to work and visit after, but my time there felt longer. The weekend in between I had some company. My sister came up to town for several hours one day. My closest friend came too, and stayed with me a couple days, helping me with the to-do list in a big way. Their company was much needed and appreciated. But in some ways it made the return to being alone harder. That pressure thing again, I guess.

Recently, I've had another sister and one of her sons visiting for a few days, and a longer visit from my friend. Again, the space they left behind seems emptier for having been filled for a bit. And I wonder why I ended up this alone. I know my long-distance friends are there for me, and their support has been beyond measure. But still...

In the midst of all my self pity, I try to remember how alone Mom must feel, unable to even communicate, to make herself understood. I feel utterly alone when I'm with her. Does she feel the same way when she's with me? And what about all the times I'm not there at all? I don't know how to fix this for either of us.


Phiala said...

It's absolutely crucial to be selfish. There's no possible way you can take care of your mother if you don't take care of yourself first.

It's also pretty important to be whiny and selfish to your friends. That's what we're for. It's not like you haven't heard me whine a fair bit. :) It's part of taking care of yourself, and it's also part of not taking it out on people who would be hurt by it.

So, you know, keep at it.

Sarah Maximiek said...

There is nothing selfish about it. Caregiving is a huge stress, and you are feeling it - not only coping with the caring part, but trying on some level to cope with your mom playing a very different role then the near-constant presence she has been in your life for years now.

Being selfish, and taking care of yourself, is a huge part of this process. If you can find support for caregivers might be a good help for you, even if it is just online support.

Marjorie said...

Yes. Exactly what Phiala just said.

You absolutely have to look after yourself, you can't care for anyone else if you don't. And if it was someone else going through what you're dealing with, you'd feel sorry for them, so why would you not feel sorry for yourself, when it's you who is in the middle of it.

Love, and don't feel guilty about how you feel, and how you express it here, or to us and your other friends. It's OK. Like Phiala said, it's what friends are for.