My mom died last Tuesday, November 4, 2003 and we buried her yesterday. [note: I wrote this on Sunday]
Why am I writing this? Well, it’s cathartic to some extent. And, there is a good story within about an “angel” who made sure my mother was well cared for during her final days.
It’s kind of a long story, but I’ll try to give the abbreviated version.
My mother turned 81 right before this past Thanksgiving. A couple of years ago she was diagnosed with an MAI infection. MAI is a bacteria closely related to tuberculosis. It’s slow growing, but difficult to eradicate. The treatment is massive antibiotics over the course of 12-18 months. The meds made her nauseous, so she didn’t take them religiously. Nonetheless, while not in tip-top shape, when I saw her at Thanksgiving she was fine.
The day before leaving on our Christmas vacation I called home to check to see how they were doing, and my younger brother (who lives at home with my parents) told me about some bizarre behaviors my mom was exhibiting. Hallucinations. Paranoia. Not recognizing family members. Classic stage three Alzheimers, but with an onset of weeks rather than years. Can’t be Alzeimers. Must be toxic meds or something. I asked my brother to schedule a consultation with her doctor.
When I returned from vacation, I called home again. My mom had been admitted to the hospital, not for her bizarre behavior, but due to a urinary infection. Due to her mental state, my brother was uncomfortable bringing her back home, but the hospital said they had no reason to keep her there. So they sent her home, but scheduled a home-nurse visit for a week later. During this week, I visited her and was shocked at her appearance. She’d lost about 25 percent of her body weight and was down to 75 pounds. Literally, skin and bones. She looked like a Holocaust victim. Here is the post I made in MPSIMS regarding my impressions of that visit.
When the home visiting nurse checked her, my brother expressed his concern about my mom not eating. The nurse gave her a small amount of water and my mom couldn’t keep it down. So it was back to the hospital. She never went back home.
Turns out her digestive system had stopped working and her stomach acids backed up. With the CAT scan and xrays to determine what was going on, they also discovered that the MAI infection had spread through her body like a cancer. So for two weeks in the hospital, with an IV and a nasal-gastro tube (to suck out the acids) decisions had to be made. So my brothers and my father and I made hard choices.
Resuscitation? No. Paddles? No. Breathing tube if required? No. Feeding tube? This one was very difficult for my father. His head said no, but his heart couldn’t face “starving her to death”. Finally he agreed. It wasn’t about what we wanted. The only question was what did my mom want. It was helpful that my mom had signed a living will about 5 years ago giving permission for the Health Care Power of Attorney to withhold a feeding tube. This helped indicate her wishes.
There were good days and bad days. It was a roller coaster ride. The primary physician called the family together with social services to talk about options after the hospital. It was clear she couldn’t go home in her condition. A woman from HospiceCare, Inc. came and talked to us. The Hospice sounded terrific. It’s a beautiful 18 room facility out in the country just 10 minutes from my parents house. We collectively decided it was the best of all possible scenarios.
We were told she qualified. Then we were told she didn’t. Then it was a maybe. After a few days of that, with great relief, she was transferred to the Hospice. She’d been there about a week, and she steadily and relentlessly continued to fade. When she was admitted, the Hospice doctor gave her a week to 10 days. Last Saturday morning (day of the Shuttle tragedy) she was alert enough to recognize us and squeeze my hand. My wife even got her to smile a couple of times. On Monday though she was pretty much unresponsive.
I’ve spent about every other day driving to Madison early in the morning to spend a couple of hours with her. I’m grateful for the flexibility my job and my boss provide me. On top of all that, my wife had surgery last week and is recovering (nothing life threatening).
Here is the angel story. I got a call the Sunday night prior to her death from my High School girlfriend who I hadn’t heard from in over 15 years. She called to express her sympathy. I was incredulous that she knew about my mom’s health. When asked how, she said she works for HospiceCare as the triage nurse and is one of the people who decide who gets admitted and who doesn’t. She saw my mom’s name, checked the birth date, and came to the conclusion that it was my mother. She made sure my mom got admitted to the facility. It’s a small world, and as they say, God works in mysterious ways.
She spent her last week in the Hospice. The staff was wonderful to not only my mother, but to our whole family. Her last days were as good as we could hope for.
The visitation, funeral, and burial all went smoothly (well, they didn’t actually bury her at the scene, just a short service at the cemetery). My dad was so happy to see old friends and relatives at the funeral. Dad said to me, “it’s too bad your mother couldn’t be here to enjoy this.” I told him she was here, and she was smiling.
And it was a joy actually, going through all the old picture albums to select photos to display, some going back to the 1920s. My mom, in her youth, was quite a beauty. The decisions and planning for the funeral went easier than expected. Us three sons didn’t have any strong opinions about anything so there weren’t any conflicts.
My dad has two remaining siblings, sisters, and one of them made it to the funeral (my cousin, her son, drove her). My mom’s last remaining sibling was able to make it too. Both of them had to drive from Michigan.
I’m at peace. I got a chance to say good-bye. In spite of the emotional pain, I’m grateful for that, because not everyone has that chance.