Monday, December 31, 2007

Part I of a Long Story with a Sad Ending

I still don't know why she died, but I do know how she died. One of my father's ex-POW friends asked what she died of and I had to say, "I don't really know." It wasn't until she checked into the ER for the 3rd time in as many months, on December 14th, that we really knew how sick she was. It all unfolded like a series of misfortunate events, a victim of specialized medicine. Everyone treated a part and no one treated the whole. It was just during this last year that my sister and I took over taking them to the doctors. My father's vision had been failing for a while and he called upon me (I lived a block away) more and more often to drive them places, until finally he gave up altogether (thank god).

My sister and I had watched them decline for some time. in 2005 we started the discussion with them about moving to an independent living facility. But giving up your home, your independence is hard. We thought it would offer them community, safety, 3 squares a day and easier, wheelchair friendly living. We also naively assumed that they were on top of their own medical care - asking the right questions, understanding the answers, making the right decisions. Not until this year, when I sat in the examining room with my mother, listening to her describe her ailments to her doctors did I realize that she wasn't giving the right answers, emphasizing the right information. Imagine my shock when I took her for her every-6-weeks shot and walked through the door labeled Oncology Hematology Associates, a place she had been referred to years ago for her anemia. Surely if she had cancer someone would have said something. She had been going for 4 years, so no way she could have cancer without me knowing. When I asked the DR "What exactly is her diagnosis?" he said, "She doesn't make enough blood cells." Was that the elementary school answer or was I invading doctor-patient confidentiality? But I digress...

So here it is March and they are preparing to move. They need a physical before they can move in and her seldom seen GP does a cursory exam, gives her passing grades and they move in. They moved from MD to VA, and we wanted them to use the doctors associated with their facility, the ones who held office hours at that location. So she sees a new DR, but only for a cursory physical and then later for a specific ailment - back pain. He prescribes a lidocaine patch - didn't even do a urine culture. Back pain persists to excruciating, he sends her to the hospital. My sister takes her that afternoon, which drags on long into the night until they have a bed and can admit her. The ER discovers a urinary tract infection, among other things. This is back in October. After a week of tests, they finally order the MRI that shows several small spinal vertebrae fractures. We knew that's what it was because she had the same problem and surgery a year or two ago, different hospital, different DR, but they had to find out the slow, insurance-friendly way. Call in the neurosurgeon, he repairs them. After surgery she has an irregular heartbeat so she spends a few days in the CCU until that is stabilized and she goes home pain free.

She wasn't deemed healthy enough to return to her independent living apartment and had to go to the skilled nursing portion of their facility. She HATED it. You would too - pretty much a semi-private hospital room. And they asked her to exercise. Well they kept at her and she got sassy enough that her attitude was, "I'll show them! They want 10 reps, I'll do 12! And as fast as I can." Six week she spent there, endearing herself to the staff and the therapists. Six weeks of the best exercise (and new anti-depressant) and she was a new woman. We were SO, SO very proud of her. She walked that walker up and down the hallways, walked herself right out of there and back to her apartment the day before Thanksgiving.

Sitting on Daddy's LapIf you are a regular reader of the blog, you know how wonderful Thanksgiving was. The Monday after, I took her to her eye DR appointment and then to her favorite place ~ Nordstrom. She said she needed some new eye shadow. I watched as the make-up sales woman gave her a mini-makeover. Wheeled her around until she found just the right t-shirts, not too long, high neckline, with a soft and loose fit. She bought 4! Even Dad got in on it, buying the new shoes that she had been begging (nagging) him to get for so long. It was perfect, except for that niggling pain in her back. By Thursday she decided that she needed to see a DR. She called, he said go to the emergency room. They knew the drill by now and decided to wait until morning. There's nothing worse than spending all night in the ER - why not start fresh in the morning? Looking back, I'm amazed she could endure the pain that long, but it was her decision.

I go in to the emergency room and while waiting for a wheelchair to bring her in, tell them her name and that her records should be on file, she was just in for the same thing. The ER clerk says, "Kidney failure? That's what it says here." I say, noooo, back pain. Barbed question marks start popping out of my head....what's going on???? Oh, and did I say her attending physician had to turn over her care to a new doctor because he had a medical problem of his own - prostate cancer? be continued~


Terry said...

This is very eery, because I too, do not really know the cause of my mother's death, except that she was in respiratory distress. But the reason for her hospitalization was increasing and severe back pain that had dogged her for months with no answers from the doctors as to the cause. When asked what she died from I say "respiratory failure." That means nothing, but it's an answer. But it's not the answer to the question that still haunts me.

Lynda Boltz said...

Lesley, my heart is with you and your family. I'm so sorry to hear of your mother's death. We experienced similar frustrations dealing with my parents' ill health and my father's death this Thanksgiving -- they hardly ever "asked the right questions" and then the answers never truly matched.

But Daddy is gone now and we try our best every day to go on in the way he wanted. My mother is a saint and wants his service "duplicated" when she passes. We kids -- all 4 of us -- worked to make certain everything was right. We helped Mother plan the music, the words, the stories that would be shared. It was beautiful, terrible, uplifting, and sad all at once. We are determined not to allow the holidays to become a time of sadness and mourning for our family, but rather a reflective period for us all. Much love and care to you and yours, Lynda

Anonymous said...

Oh Lesley--this all sounds so very familiar. It was only in the last three months of my aunt's life that I learned to navigate "the system." At one point, knowing how quickly my aunt was failing and seeing her horrific loss of dignity and self, I asked one of the in-take folks at the rehab facility why they encouraged my aunt to spend $$ for private therapies (insurance had stopped paying in this particular case) that were obviously exhausting her, causing more intense pain and contributing to her depression because she couldn't make progress. The response was that they "didn't want to take away her hope."
The most positive people and experiences occurred when hospice finally became involved; however, I had to fire her primary care doctor to have them. The primary care physican had 22 medications prescribed and when the hospice doctor took over she told me that several of them did the same thing. My aunt was able to go home for the final weeks and was cared for with dignity and love.
Thank you for your journal--I have struggled with the issues surrounding my aunt's final months and it has helped to read your loving thoughts.

Kathie said...

Looks like many of us can relate to your story. And the part about the medical community treating parts of the person, but not the whole person! So very true.

Ten years later, I still feel so guilty about my aunt's last illness. I trusted the doctors to get it right but her main doctor went on vacation, assigning her case to another doctor, who had to go out of town, assigning her to a third doctor, and so on.

I probably couldn't have changed the outcome, but no one was telling me anything and my dear aunt died alone in a teeny hospital room. She deserved so much better.

I know my life has never seemed the same to me again since my mother died in '01. The world may never look the same to you again either. And I guess that's just the way it is, riding along this segment of the circle of life. Peace to you, Lesley.

Ana Conceicao said...

I am sorry to hear about your mothers passing. I wish you peace in this time of sorrow. I know that there is nothing that compares to losing a parent. I will share with you that a few years ago when my father passed away, the one thing that soothed me the most, was making a book of all and any photos I could find of him. It was a way to remember lost moments and happy times. I wish you and your family peace.