Category: Hospice,

Home Again…Part 1: Adjusting

Two years. So much can happen. So much can change. I’m sure I don’t have to explain that to you…you lived the last years, too. If you’re reading this you survived them, too.

Two years ago I went to the best conference of my life. Connecting with other women clergy within my denomination energized me and encouraged me. I was excited to get back to my congregation. But first a quick visit to get my Scrabble fix with Mom.

Two years ago she got sick and never really bounced back. Her breathing issues were complicated by her anxiety. Or was it the other way around? The cycle was vicious. Then the natural progression of age related dementia began to show up unannounced. Another severe lung infection and we called in support from hospice. She had several infections, but they cleared up with medication…except for this last time.

The day before Christmas Eve was a typical day. Sure, her appetite was off a little. But she was scolding the officials and coaching the teams from her chair as she watched a couple bowl games. Before that we managed to get in a game of Scrabble. All in all, a pretty normal day.

Until bedtime. As she was completing her usual bedtime routine she began to have breathing issues which switched on the anxiety. A dose of morphine, holding her hand for a bit so it could kick in, and then walking her to bed and tucking her in seemed to quell the attack. But her sleep was restless, and she cried out for it all to end. More hand holding and gentle words. I called hospice and was directed to use a med that would help with the secretions. This seemed to bring a little relief and she fell asleep. And then she was gone.

My husband and I had dreamed of somehow being able to purchase Mom’s house and live out our retirement in the beauty and warmth of Arizona. Not having enough means and Nelson needing to be in Ohio for his mom brought me back to Ohio.

In one of our conversations on the long trip home, I tried to express part of what made this obvious choice so difficult for me. I’m nearly sixty-five years old, and this is the first move I’ve made, we’ve made, without knowing where or what, without having purpose or direction. Limbo. Waiting. Trusting. Wondering. I’m living an unsettled sort of peace. And I’ll confess, I’m not particularly fond or comfortable with this strange mix of circumstances.

But I’m home. And we’ll continue to work out all that means, and where that goes. Because that’s what we do.

Lessons Learned from Mom: Letting Go, Part One

So I’ve been here, living and caring for Mom one year, two months, and eight days. But who’s counting.

Life has been interesting and frustrating. I have spent a considerable amount of time playing mindless games on my phone and ipad. I haven’t been able to concentrate enough to read or write. I haven’t finished reading a single book clear through. And my writing feels pointless and overly repetitive.

So why am I trying again?

This week we began working with hospice. The team is absolutely tremendous, compassionate, encouraging, and gentle with Mom. I don’t feel quite as alone in this process.

The one word I have always associated with hospice and end of life is intentionality. Serious conversations and light-hearted remembering. Laughter and tears. And a clear willingness not to sweep things under the carpet. Finally, naming the elephant in the room. Giving up control. Relaxing a little.

All of those things are happening. And I’m among other things, I’m going to include some of those reflections here.

This morning Mom had an appointment for her pacemaker check. We weren’t sure if we needed to keep the appointment. We did the check and we have a follow-up with the cardiologist next week. We’re going to talk to him about whether we need to keep doing this. And ask him the question our hospice nurse asked: what about shutting the pacemaker off?

After the pacemaker check we went to LabCorp for blood work. This was for the cardiologist, too. They were running behind. Several people were waiting. Mom nearly fell asleep. I’m getting better at maneuvering the chair and the portable but cumbersome O2 tank.

After lunch Mom took a long and hard nap in her chair. She always looks so uncomfortable. She woke up hard. After a trip to the bathroom, when she was settled back in her chair, I checked on her. She was troubled by how long and hard she had slept. She looked at me and asked, “Is this how it’s going to be?”

I told her I don’t know, but we’re not going to go back to how things were. We talked for a bit about how things were changing and how hard it is for her to relinquish control. Her comfort has always been in her rigid schedule. On a MBTI she bleeds J. Her calendars have been the constant proof of her adherence to schedule and routine.

Today she told me to put her calendar away, she just didn’t feel like writing in it any more. So I did.

I guess I’m in charge of the schedule now.