Tuesday, January 01, 2008

Part II

holding my own handMy mother's second visit to the ER is when, where and how we began to really understand how sick she was. In the ER you have a whole team of DRs looking at everything - the whole patient. I was there with her that day, she couldn't go it alone. I was not only emotional support, but I was there, just as my sister was on the prior and next admission, to answer the questions correctly. When the intern asked, "How is your walking?" my mother responded, "I walk just fine." In her opinion she now did walk just fine, especially after 6 weeks of rehab. But she failed to mentioned she couldn't take a step without a walker. So I chimed in with that bit of info. At one point he asked if my mother was a heavy drinker. Again, this confused me no end - she had about one drink a year for as long as I've been around. He said her liver showed signs of cirrhosis.

They did an x-ray, then did a CAT scan, but they wouldn't do the MRI that I knew would reveal the new fractures. They admitted her again for another urinary tract infection. In the meantime the new team of doctors, the hospitalists, were overseeing her care. This is when we learned that mom had myelodysplasia (MDS). Her bone marrow wasn't producing enough blood cells. He said it was a pre-cancer, but other DRs considered it a cancer. He's the one who said "Sometimes you just don't want to know." He wanted a bone marrow biopsy. His partner, the hematologist, said it was not necessary, that it was too painful and wouldn't change anything because she obviously wasn't a candidate for a stem cell transplant.

Days went by and finally they did the MRI. Mom was energetic and in good spirits except for the pain. Surgery was scheduled, done and she was discharged the following day after getting the OK from physical and occupational therapy to go back to rehab. She was incensed that she could not go back to her apartment but the therapists thought that with a week in rehab she would be back in her own home again. But this time the pain did not go away and she seemed beaten down by it all. The sparkle had gone from her eyes.

One look at her and you knew she had lost something vital. She had no appetite. Swallowing her many pills had become difficult and traumatizing. Nausea and weakness persisted. Yet each day she struggled out of bed, into the wheelchair and off to therapy where they had her do the simplest of bed exercises. She mustered the energy to go to the dining area for lunch because "friends were waiting for me." She didn't want to disappoint people she had come to know and care for during her last rehab admission. Yet she didn't eat, she just kept them company. My Dad was by her side every day. I was there most days, often with a daughter and/or granddaughter in tow. The babies were really the best medicine at this point. Of course we did not know she was dying.

We knew something was wrong but we didn't know what. We had been waiting for the resident DR all week. Mind you, this was another DR who had taken over her care, her first DR now fighting his own cancer battle. He had never examined her. He examined her chart. Medicine by numbers. On Friday he came strolling in, read the chart and came over to the table where my mom, dad, daughter and I were sitting. He bluntly said her creatinin level wasn't good and she should go to the hospital. Arrgh - the last place she wanted to be again. He said perhaps she was just dehydrated and they could give her fluids by IV there (they cannot at the nursing home). It was 2pm by then and you know how we know better than to go to the ER late in the afternoon. So we hesitated. I wondered why, if all she needed was an IV she had to go the ER route. Isn't that overdoing it and costing the insurance companies money? Isn't that contrary to managed care and all the hullabaloo over skyrocketing medical costs?

Then he looked me in the eye and muttered in a way my parents couldn't hear, "If she doesn't go now, we could have a mortality issue by Monday." Holy shit. My mother is dying? I asked him for a few minutes for us to talk it over and he went to call my sister. He was much more blunt with her (he was reputed to be a good diagnostician but he was HORRIBLE with people), explaining her situation more openly. He also said, "If they admit her..." Turns out if there is nothing they can do for a dying person, they will not admit you to the hospital. So if they wouldn't admit her and she needed an IV to perhaps continue to live, then what would we do? Where's the manual for all of this? This is no time to be figuring it out as we go.

A month ago my sister and I had discussed hiring a Geriatric Care Manager - someone knowledgeable and skilled in navigating these waters. We searched online for one in their area and I stumbled upon a woman named Ann E. O'Neill. We took that as a sign, Annie O'Neill was both my Dad's grandmother and it is also my granddaughter's name. Yet we kept putting it off. Katie had finally called her a couple of days before this "mortality" issue to schedule a meeting but it was too little too late. They could not see mom until the following week.

We agreed that the hospital was really the only option, especially on a Friday afternoon. Try to get medical care, advice or attention on a weekend. 3 o'clock approached and transportation by ambulance was arranged. Katie left work early and came to accompany her to the hospital. I went back home to Maryland wondering if they would even admit her, worried that they would not.

7 comments:

Mary Ann Littlejohn said...

Leslie,

Thanks for sharing your Mother's saga. My family recently went through this with my father passing away in early November. It seemed like every few hours there was another chapter. I understand your pain and frustration as control is lost over what happens to a loved one.

Vickie said...

Prayers for comfort as all of this continues to unfold.

Pamela Taylor said...

Lesley, how my heart goes out to you. I feel like I have known you so well for years--ever since I discovered your "new" fragments and felt such an instant connection to you, as our art was so similar even though we had never crossed paths. I know we only met once, but you are the one who pushed me into new waters...you are very dear to me. I have prayed for your family ever since early December and will continue to do so. I am so happy that you are taking such beautiful, positive steps in going on....I just cannot imagine losing my mom. And yet, I know your journey will help me when the time comes. And what a "coincidence" that you are taking the year off to spend with your family and your art. How healing that will be for you. Prayers are up, Lesley.

Pat's Place said...

You write poignantly of the trauma experienced by patients and their families by our current medical care system. My parents died over 20 years ago - 8 days apart from one another from totally different diseases. Their GP was wonderful - knew them intimately for many, many years and was lovingly/tactfully blunt when it was time to face and make those terrible decisions. Do we use life support or don't we??? Two of their three daughters signed the "do not recessitate" form. The third (and youngest) simply could not even go there in her wildest imagination.

Maybe a manual for family members should be written - certainly it's not anyone's favorite topic, but it's very crucial information we lack when our loved ones are dying.

It's horrific that you were never told the extent of her illness - that, perhaps, SHE was never informed... Is that really a "kindness?" Each individual must decide for themselves. For me, knowledge provides tools for moving through whatever is at hand. But not everyone feels as I do.

Blessings to you and your family.

Joyce said...

Thank you for writing. I too am concerned that my parents don't give the doctor the whole picture. I'm sad about that.

Someday it will matter.

Prayers for comfort & peace for you!

Sharon said...

Sending my thoughts and blessings to you and your family... thank you for sharing.
~Sharon

Anonymous said...

Lesley--
Thank you for this chronicle. In going through the same experience last fall and early winter, I was alone and the inability of the entire medical/rehab/nursing home system to deal truthfully and tactfully with dying resulted in a feeling that I was somehow remiss in wanting to know the truth of my aunt's situation.
You are doing a service in your truth telling that is much needed.
Cheryl