as good as it gets

When I watched my mom sleeping last week, I told myself that this moment is as good as it gets. I put aside any assumptions that she was going to be able to speak, feed herself, stand up. It isn't that I have given up all hope. But I was able to accept that this is the current moment, her and I in that room, me knowing that I am doing everything I can do to be present with her, and her at least aware that I am there.

She has been very dehydrated. I gently woke her long enough to coax her to drink some ice water through a straw. She took a few sips and smiled at me. I smiled back.

Happy to have this moment.

Watching

I feel like I do a lot of watching these days. Today I am watching my mom. Watching her do what, I'm not sure. I have been by her bedside for four days at this point. She doesn't talk much at this point, mostly cries out of frustration, grief, discomfort. I don't think she will be here much longer and if she has to live like this, why would I want her to stick around?

What am I focusing on is being thankful that I can at least be here these few days, sit with her, beg her to eat and drink, hold her hand. We only have this moment, maybe few ahead of us, I don't know.

She is on a new pain medication. She dozes a lot, sometimes snores like a fieldhand, then wakes up. She look surprised to see me, maybe wondering why I am hanging around, wondering how she and I got into this situation.

compassion fatigue

Terms like 'compassion fatigue' are just academic until you actually experience it yourself. I felt it last weekend.

I sat with my mom for three days and basically watched her cry the whole time, with few breaks her and there (mainly when she was taking naps). She is miserable, uncomfortable, depressed. I know she can't help it. At this point, she has no emotional resilience at all. She even cried when her lunch arrived and she didn't see the iced tea.

As a caregiver, after sitting with someone who is feeling that way, hour after hour, and then returning home and hearing the same thing over the telephone, responding becomes more and more difficult. You run out of words. Your own energy gets depleted. You're exhausted. At least I was.

I had to remind myself that she is doing the best she can under these circumstances. I can at least leave the room at some point and go back to my own home, but my mom doesn't get to leave the room, or her own broken down body. No breaks for her.

And I reminded myself that this is life as it is right now, not as I would wish it to be. And this is my job right now. I wouldn't want it to be any other way. Whether or not I am 'feeling it.' One foot in front of the other. In that way, being with her is a form of practice, listening, being present, but not judging.

speakerphone meltdown

I spent three days with my mom over the weekend and I had a meltdown. I admit it.

She basically cried for three days. She didn't feel good, her pressure sore was giving her fits, she wanted to be young and energetic and walk and run and have control of her life again. She didn't admit to the last part but I could see it in her eyes. She is pitiful when she cries, and it makes me feel so incredibly helpless.

But I was also angry at her for making me feel this way, in spite of all of my mental health training which tells me that nobody 'makes' me feel any way, and that I am feeling as helpless as she is, and that my anger is a reaction to that helplessness. Other than catching myself before I got a little short with her at times, what was I supposed to do with all of this anger?

We set my mom up with a speakerphone with big buttons, since she has trouble handling the receiver. It never worked well, and she spilled milk all over it anyway. I bought another one, knowing that it would suck but not finding any alternatives in my Web shopping.

The new one was set up and I realized that was even less effective from the milk-impaired version that it replaced. I tried to use it and it wasn't picking up my voice at all. Boom. The camel's back was broken. I yelled at the phone and managed to hold myself back from throwing it against the wall. My mom sat and watched me, in silence, as as I had my tantrum.

And then I realized what I was raging against. I would be calling my mom from NYC and we wouldn't be able to communicate. She might hear me but she wouldn't be able to answer back. Someday I might call out to her and I won't know if she hears me or not but I know that she won't be able to answer back. Ever.

My brother suggested we hit a discount store to look for another one. We found one that actually works. I can still check in with Mom, for now.

Helplessness, part 1

I am referring this posting as helplessness,part 1 because when you are in a caregiving situation, helplessness is that elephant in the room that never seems to lumber off into another room. "Go bug somebody else."

Helplessness is when you sit and you watch somebody you love suffering and because they are suffering, so are you, but you can't make it go away. You can't fix them and you can't make the people who are supposed be fixing them work any faster or smarter. At some point, you might even have to admit that they are going south on you, not getting better and probably getting worse.

Helplessness makes you blow up at something stupid like a nurse's aide who sounds a little grouchy and gives an order rather than making a request. All of a sudden, that person becomes the cause of all of the pain in the world, or at least your pain, and all you want to do is make them feel as bad as you do.

You blow up and it helps, at least for the moment. Then you feel worse the next day, and guilty because you went off on someone. And more helpless.