Wednesday, February 6, 2013

Assisted living is not really living

"Sometimes all that we can know is, there's no such thing as no regrets."

My father died on November 30, 2010. His 90th birthday would have been December 21, 2010.

Before I launch into the subject of this post, which is the follow-up to my last post about my mother, I have to say that I've wanted to write about innumerable things since I began her story. For example, my older daughter's disastrous entry in an "ugliest tattoo" contest, my trip to Austin for my younger daughter's endoscopy and colonoscopy, my thoughts about "imposter syndrome" as provoked by a blog post by Kat O'Sullivan, my ongoing quest for the ever-elusive mojo, some exciting developments in the world of glass according to me, reflections on my 18 months of living post gainful employment, and a literary analysis of the works of F. Scott Fitzgerald. OK, I lied about the last one, I just watched the 1974 movie version of The Great Gatsy and now I'm re-reading the book, and that's about the extent of that.

But I haven't written because I feel like I need to finish my mom's story, or at least bring it to date since the ending remains to be seen. So my readers will have to wait for my discourses on those other enthralling subjects. I hope that's OK with the five of you.

November 30, 2010 was a Tuesday. My work group had had our holiday lunch and were offered the option to return to work afterwards or to take the rest of the day off. I was still fitting bead making into the scant time allotted so I opted to head home. I stopped for a manicure and pedicure, a much greater pleasure during a mid-day mid-week lull, and I got the phone call from my brother as I drove the last mile home.

"Dad's in the hospital. I talked to the nurse and asked her if I should get on a plane. She said, I would if you want to see him again," my brother told me. "I'm looking at flights now."

My dad had been ailing for most of the last 15 years, after surviving colon cancer at the age of 75, cancer that should have been totally avoided if my dad hadn't been squeamish and stubborn and steadfastly refused to have a colonoscopy when it would have helped. He recovered but remained troubled with digestive problems throughout the rest of his life. Mentally he was as sharp as ever but he was very thin and had lost interest in travel, stamp collecting and preferred to spend quiet days in the retirement community in Coconut Creek that had been home for 17 years.

By the time I got home it was over. I had a message on my machine from my mother. "Your father died. I'm sitting with him in the hospital room now. Call me at home later."

My brother found a flight that evening that got him to my parents' condo close to midnight. Neil and I flew down the next day. The funeral was on Friday. Because my dad was a veteran, a military honor guard attended and played Taps at the gravesite. My dad would have liked that. My brother spoke at the service and I spoke, of how my dad had given me my early love of music and poetry, and recited the poem Daffodils by William Wordsworth, one of his favorites.

And then as I said, we pretty much scattered back to homes and jobs and lives. On Sunday my brother was the last too leave and shortly after he left my mom took a deliberate overdose of sleeping aids. My brother started calling her the minute he got off the plane and when he got no answer he called me. We ran through possible scenarios, from mom lying on her bed not answering the phone (unlikely) to mom having gone on an outing with compassionate friends (more likely). Mom was famous for not keeping her cell phone on, but turning it on only when she wanted to make a call.

My brother and I decided that if we didn't reach her within one hour we'd call Security at her community and have them check on her. And so it played out that they found her on the floor, conscious but disoriented and quite sick to her stomach. Security called an ambulance; a neighbor told me that she walked out under her own steam. She would only set foot in that apartment one more time in her life.

Mom was admitted to the same hospital where my dad died and spent a week there, being monitored for the effects of the Tylenol PM because apparently acetaminophen can be gravely unfriendly to your liver. I spent a lot of time on the phone that week, taking to care providers present and past. I spoke to my mom daily too. Some of the time she was lucid and rational. Some of the time she talked to imaginary people in German, or murmured incoherently. Because she had attempted to take her own life she was "Baker Acted."

The Florida Mental Health Act of 1971 ("Baker Act") provides for emergency or involuntary commitment if there is evidence that a person has a mental illness and is a harm to self, harm to others, or self neglectful. Named for Florida state representative Maxine Baker, sponsor of the bill , it can be initiated by judges, law enforcement officials, physicians, or mental health professionals.

At the time this seemed like a good thing. My mom was in no shape to go home alone and we were unprepared to mobilize round-the-clock custodial care. A week or two in a geriatric psychiatric hospital, with medication, therapy and some time to get over the shock of my dad's death seemed to fit the bill. I'm not sure we had much choice in the matter anyway, my mom having taken things into her own hands in such a way as to remove the luxury of exploring other options.

Mom finished her week at the regular hospital with a pacemaker implant for a heart condition that might or might not have been related to the pharmaceutical shock to her system. Immediately after the surgery she was transferred to the psych hospital, loaded up with antidepressants, and put in adult diapers although she was not incontinent in any way. She spent a couple of weeks in the ward, not really understanding why she was there but continuing to repeat the mantra that she just wanted to go to sleep and never wake up. Therapy was group therapy by a social worker and most of the group members were in no shape to share or to listen. Meals were served in Styrofoam boxes with plastic forks and spoons. The TV blared all day in the one small common area.

There is a phenomenon I've experienced that the minute you don a hospital gown and get into a hospital bed, you begin to feel like a sick person. Even if you are just in for some diagnostic tests, by the time you've had your first hospital meal, you've become a full-blown invalid. My brother was convinced Mom needed to be released from the psych place, ready or not, and coached her to tell the med-management practitioner that she no longer wanted to go to sleep and never wake up. Whether she did so or not, state funding only covers so much, and so it was at the end of two weeks, my mother was transferred to the assisted living residence where she now lives, after my brother and I visited and liked what we saw.

Mom started her sojourn at Homewood as a "respite care" patient. Respite care is designed as a short term stay for situations where a regular caregiver, typically a family member, needs a break. It was also a way for us to see how the living situation suited my mother before signing a long-term contract, furnishing a room and moving in her own linens, towels and wall hangings. We liked the place as much as one can like such an institution. The staff seemed genuinely caring, the food was good and the rooms were clean. Residents ran the gamut of stages of decline, from relatively mobile and conversant to wheelchair-bound with vacant stares.

In the beginning Mom mainly suffered from severe fatigue. She slept a lot and couldn't understand why she felt so weak. She also couldn't remember where she was when she woke in the morning or that there was a pull cord by her bed to summon an aid if she had questions or wanted to get dressed or needed anything. She couldn't remember to charge her cell phone, so regular communication was somewhat problematic. But at least she had resolved to make an effort to live her life again. And at that point I honestly thought she would do it, she would rebound and make some sort of life for herself.

I thought her energy would return. I thought her friends would continue to visit. I thought she'd participate in the activities of the residence and resume some sort of social life. We added Aricept to her prescription protocol and on the counsel of her physician we expected to see some of the cognitive cloud lift from her mind. We arranged for grief counseling and physical therapy and crossed our fingers and hoped for the best.

For a short while there was some improvement. Mom even went on a "field trip" to Tradewinds Park and said it was "very nice." That was the high point though. Soon she was losing ground again. The Aricept did not appear to be working and she was in a horrible phase of being confused, knowing she was confused and feeling terrible about being confused.

In April, one evening after dinner she fell. She wasn't hurt and could remember how it happened, but the night staff found her sitting on the floor and sent her to the hospital to be checked out according to standard operating procedure. A well meaning doctor admitted her and kept her in a hospital bed running tests for a week and once again she emerged from the hospital in weaker, sadder shape. She began using a wheelchair. The staff put her in bed because it was easier to keep tabs on her there, so she slept much of the time.

About this time my brother and I, with the concurrence of her medical practitioner, decided to discontinue the Aricept. This had the desired effect. She was still confused but she was no longer worried about it. We also took her off the antidepressants and everything else that we deemed unnecessary and useless. Then she fell again and my brother and I were adamant about keeping her out of the hospital. At that point her doctor referred her to a hospice program.

I remember hearing the word "hospice" and feeling the proverbial cold chill run down my back. Hospice to me meant days left to live, but the medical director explained to me that patients sometimes stayed in hospice for a long time, as long as two years. It was May 2011, a couple of weeks shy of my mom's 88th birthday. I had plane tickets to see her then, but she was in a decline and it was uncertain if she'd live two more weeks. I was conflicted, wanting to go immediately and just sit with her during her last hours, while knowing that she might live for many more months. I waited and she rallied.

I won't say she returned to anything close to the person we knew before my dad's death, but she was in a steady state. We hired an aide to keep her engaged and encourage her to participate in house activities such as daily "exercise" class. We continued with physical therapy and had her walking again with a walker. We'd long abandoned grief counseling; you can't make progress if you can't remember ever meeting the therapist before at every session. But mom didn't seem unhappy, she rarely remembered that my dad was gone although she asked for him sometimes.

Gradually though, her stamina waned. Her ankles swelled and she had to have them elevated as much as possible. Being in bed with legs propped on pillows was a little too conducive to sleeping a good part of each day.

And now it is February 2013 and my mom is approaching her 90th birthday in May and her second anniversary in the hospice program. She has been taking Megace, an appetite stimulant often used with cancer and aids patients, and has put on weight, but just lately she has been refusing to eat, or more precisely, to feed herself. She will eat if she is fed. But the Megace-induced food exuberance is gone.

My brother thinks she is sending a message by not feeding herself. I think she lacks that much reasoning power at this point and just isn't hungry. You don't work up much appetite sitting and sleeping. But last night we kicked around the ethics of taking her off Megace and letting nature take it's course. There's a fine line between doing something affirmative to hasten nature's course and ceasing to do something to inhibit it. We didn't land anywhere other than an agreement to have a philosophical discussion with her medical team about the idea of taking Mom off Megace. Making the decision based on the feedback from that discussion would be another discussion

Right now I'm looking at flights and planning a trip to see Mom in March, with the idea of going again for her birthday in May. As much as I comprehend that her life is a mere existence rather than a meaningful life, I am not ready to say goodbye and let her go. In the end I know it isn't my choice, she will die one day and I will accept it and maybe find some relief in it. When a nonagenarian dies it isn't a tragedy and if she goes to sleep and never wakes up, well it is what she said she wanted. I don't pretend I understand that or believe she had the right to engineer it in her grief.

"All are under sentence of death," as Galsworthy put it. And as Milton put in, "they also serve who only stand and wait." Or in my mom's case sit and sleep.

But really, what's the rush?

"for life's not a paragraph

and death i think is no parenthesis."

(e.e. cummings)

"There's no such thing as no regrets
But baby it's alright
I'm not running
I'm not hiding
I'm not reaching
I'm just resting in the arms of the great wide open
Gonna pull my soul in
And I'm almost home."

(Mary Chapin Carpenter)

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