1916-2015 But her influence lives on endlessly in her 16 children, 23 grandchildren and countless great-grands to come.
Alma was my mother. Her story, together with the stories of my many patients over the past twently years, is the inspiration for the Autonomy In Aging Project.
My mother was a remarkable woman. She came from a modest small-town background and read more books and traveled to more counrties than most people ever will. And she did all that while raising 16 children with an impressive, if intimidating husband. She lived to celebrate her 99th birthday and we were all blessed to have had her in our lives so long.
I was especially lucky in that Mother lived with my family for the last 4 years of her life.
Even though she suffered a severe decrease in her short-term memory during those years, she always knew us and enthusiastically engaged in conversation. Her love of music and delight in small children never waned. And although her physical capabilities declined her need to see herself as a person with autonomy and dignity never diminished.
It is with that in mind that I made her the promise she would never have to go into the hospital (excepting for a broken bone or baby!). I realize that with my background in health care, it was less frightening to me to make that promise than it will be for others. I was confident that I could be her advocate and that I could get her what she needed with her staying at home. But I also believe that with some planning and clear discussion of goals, many more families can help their elders to achieve a peaceful and comfortable end to their lives rather than an institutional death. This is something that you can do for yourself and for your loved ones.
Having more resources than most people and being able to call on so many siblings who could contribute to the cost of caring for Mother at home, I was very fortunate. There is a desperate need for an over-haul in how we deal with people of very advanced age in this country. We have turned old age into a medical condition rather than another phase of life. Consequently, Medicaid and other insurances pay for the costs of a nursing home and hospital care at the end of life, but rarely pay family members to care for their loved ones in the comfort of their homes. The difficult thing to understand is that the cost savings would be amazing, and yet we do not do it. Instead, we seem to feel more comfortable in shoveling millions of dollars to institutions who often give sub-standard care than a fraction of that cost to family members to compensate them for the care of their loved ones.
"Grandma fell!"
This was the shout I heard late one night. Katie, my 20 year old daughter was in from college and had come into the house and heard the fall. Rushing to Mother's room I found her next to her bed, but as always, in good spirits. Katie and I helped her back into bed after being sure she was not in any pain which could indicate a broken bone. Katie asked if she could stay the night in Grandma's room to be sure she did not need anything. It is wonderful to have compassionate children!
As we were talking with my mother after helping her to bed, it was clear she had a slight facial droop. Facial droop is a sign of a stroke. It would have been "reasonable" to call 911 and head to the hospital.
We did not.
Here is my rationale:
Mother was not in any pain. She was not in any distress at all, just annoyed to have "bothered" us so late at night. I know the scenario that would have played out had we called 911.
Paramedics arrive taking vital signs, asking questions, starting an IV and in general causing a lot of (well meaning) confusion for a 96 year old woman in the middle of the night.
An ambulance ride to the Emergency Department where she faces more questions and tests.
CT scan, if it showed no bleeding in the brain then likely doctors would recommend a medication called tPA. It can be a miracle drug for stroke patients if administered within hours of symptoms, and helps to avoid disability and post-stroke complications. However, it also requires the patient be admitted to the hospital and opens her up to other complications.
When considering all of that, I would ask: What is our goal?
I already knew my mother's wishes in so far as being hospitalized. And so we all went to sleep and waited to see what the next day would bring.
In the following days it became clear that Mother was much weaker. Even using her walker, she could not stand and walk without a lot of assistance. We were fortunate in that Mother was a petite person. At 5' tall and barely 105 pounds, it was not difficult to give her physical assistance when needed.
But this did pose a new set of problems. Mother could no longer be left alone for long stretches of time. My husband traveled frequently for business and my work days often went past 10pm, sometimes requiring me to be overnight on-call in the hospital. This meant we needed in-home care.
But it is a difficult process. Having strangers come into your home and do such personal care means you have to find the right people. And much like finding the right spouse, it is a challenge! We were definitely in a better situation than most people. My brothers and sisters contributed every month to cover the expenses of having in-home care, and it was expensive. We never could have done it without everyone contributing.
We had 3 more years with Mother after her stroke. Her health was good, although we rarely went to the doctor. Again, this may seem strange. But we had started this decreasing interactions with what I call the Health Care Industrial System many years earlier.
Years before she lived with us, Mother started to experience intermittent periods of shortness of breath. She had been to a doctor who ordered tests but never came to a definitive diagnosis. She was given an oxygen tank to have at her home and occasionally used it when she felt the need.
One afternoon she called me because the feeling of being short of breath became particularly uncomfortable. We went to the Emergency Department where I had worked several years earlier and I knew and liked many of the people on staff. Shortly after our arrival Mother had an EKG and was diagnosed with new onset atrial fibrillation. This is not an uncommon ailment as people age, it is a particular type of irregular heart rhythm and can cause shortness of breath. It also was accompanied by a degree of congestive heart failure (CHF). CHF is also very common in elderly patients and at 88 years old, we had to finally admit, Mother might just be elderly! CHF can be caused by the heart beating in an inefficient manner and fluid accumulates in the lungs, also contributing to feeling short of breath.
I knew that the staff would automatically have her admitted to the hospital, it is part of the protocol for most patients who are newly diagnosed. I also knew that Mother wanted no part of staying in the hospital. So I explained to the nonplussed ER doctor that no, Mother would not be admitted. We made a plan to visit her primary doctor the next day to discuss appropriate treatment options. Prior to leaving the ER we obtained a copy of her EKG, chest xray and lab results. Having all of that information with us would help to avoid delays and repeat testing when we met with her doctor.
When we saw her doctor we were given different treatment options. It is routine for patients who have this type of irregular heartbeat to be put on anticoagulants (what are sometimes called blood thinners). A common one is warfarin. It helps to prevent small clots from forming in the heart that can then cause a stroke. These medications can be a great treatment option for the right patients. But I knew that if she was on warfarin Mother would need to have blood testing as often as once a month to insure that she was not in danger of having spontaneous internal bleeding. It would also put her at risk for a serious complications if she fell because warfarin inhibits the ability of blood to clot. So we opted not to have that prescribed. Dr. Hagen was fantastic because she respected Mother's right to self determination. Dr. Hagen did prescribe other medications to help control the CHF and heart rate.
It was essential that we had a physician who was willing and eager to help Mother determine the extent to which she had treatment. However, when she moved in with us, we needed to find a doctor who was closer. Basically, we knew that this new doctor would primarily be for refilling prescriptions. Because we only made the yearly appointment which was required to get the refill, the new doctor never really understood our approach. She would advise Mother on a more healthy diet (our philosophy was once you reach 90 years old, you can eat or drink anything you want at any time! My husband would say "If Alma wants a manhattan and a piece of chocolate cake three times a day, who are we to refuse?"). The new doctor also suggested blood tests and an orthopedic consultation to see if Mother needed a hip replacement. We politely declined, because again, what was the goal of these suggestions? We knew that Mother's goal was to have limited contact with doctors and hospital, to spend time with her family and to enjoy as much of her life as she was going to have. So, when I say "we politely declined" I am referring to myself and my mother. I did not make the choices for her, I instead made sure that we were all following the plan she had set out years earlier.
There is more about our personal journey in future posts and I hope our story will help you with your journey.
