Hospice. Are we at the end?
By definition, Hospice is care that focuses on a person's quality of life and dignity as they near the end of their life.
Previously, my experience in signing on Hospice for my Father was to help him in his last weeks. I signed paperwork, was handed a kit of several different drugs and given numbers to coordinate the set up of several pieces of equipment from oxygen machines to a hospital bed - all to keep him comfortable to the end.
With my mother it's been significantly different. For two key reasons, first she resides at an assisted living facility that provides support in administering care. And second, she is not even close to the end of life stage. So why start Hospice? It was a wise observation by my mother’s Palliative Doctor that the recommendation was made.
It would help to paint the picture of my mother’s condition and somewhat unusual needs as an explanation for the doctor’s observation. A little brevity to start. Have you seen the campaign “YOU ARE ENOUGH”? It is an initiative from a Los Angeles based non profit called Giving Purpose that is promoting mental health through the lens of empathy and self acceptance among other things. It's a terrific, yet simple mantra that works on so many levels. For me, it rings true as the daughter of a woman that could never be satisfied with her life and those around her. My mother has warped perceptions about the need to check off boxes about success, beauty and belonging that provide external validity. In summary, my mother and her view/standard is the opposite of this campaign - for her “Nothing is Enough!”
When I was younger, I remember my mother by two things - parties and shopping. She was very social and always the center of attention. I would show up to events at various locations to find my mom and would not need to ask where she was - I would just stop and listen to find her. Growing up I never thought anything of it - just that she was popular among her friend group and she liked to have a good time. Over the years, it became more apparent that if she was not the center of attention or receiving a certain level of adoration - she was not happy. It was increasingly difficult as she and my father got older as he could no longer continue to feed her needs. He was a total introvert that married her to ensure that he was never too isolated but as he got older he became more comfortable in his own skin. It wasn’t ideal. But that is a story for another time.
Getting back to how all this translates to modern day. As she aged and needed more medical care, the attention she always sought from my father and her friends transcended to what the doctors, nurses and caretakers could provide her. And, with the passing of my Father, as the person in charge of her care I fell into the role of facilitating the opportunities for her to receive her ‘fix’. At her assisted living facility, the rent is an all inclusive fee that provides meals, light housecleaning and activities. For an additional fee the facility will manage medications, provide assistance with getting dressed and more. For a higher level of care, we pay for additional caretaker tasks and also hired an outside ‘companion’ to help my mom several days a week with shopping, hair appts, lunch appts and some food shopping. This was working well until my mother and I had a discussion with her Oncologist about options going forward. The tests determined that her cancer was at bay and not needing aggressive treatment. His suggestion was for her to take advantage of this stop in growth and to live her days as she wished! It was at this time that I started to see a shift in my mother’s behavior, it was clear that she did not like this bill of freedom and independence. To her, freedom was translating as less attention from medical professions. So what did she do? She created reasons to receive more attention to make up for the loss of focus on her. She started to rely more on the Assisted Living aids for attention and company. She went into a depressive-like state and stayed in bed for hours at a time. Soon I was receiving calls from the Assisted Living Management stating that the care levels needed to be evaluated. My mother was requiring more than they could handle, sometimes pushing her call button fifteen times within an 8 hour period. Mentally, she was fine - it was something else. Nothing I could quite put my finger on. That is, until the Palliative doctor made her astute observation.
My mother was scheduled now to see the Palliative Doctor weekly and after one of her regular weekly appointments, I received a call. The Doctor suggested that I place my mother on Hospice. Not because she was making a determination of the days she had remaining, but because she recognized that the level of care that was going to be required was truly the job of more than what we had in place; we needed a village. At first, I was a bit confused and in disbelief about what the doctor was suggesting. However, after she went through her reasons, I quickly got on board. Her reasons were that my mother would receive regular nurse visits and have access to medications that could ease her pain and anxiety. As well, she would not have to leave her apartment for every little issue, doctors and nurse practitioners could make visits to her - essentially medical concierge services.
Explanation of early stage hospice
Let's go back to the definition. Hospice is care that focuses on a person's quality of life and dignity as they near the end of their life. Technically, because my mother is not treating her cancer, she is letting her body take its course. At 87 years of age, that course is a limited runway. Thus, a limited runway or for clarity - a limit of space, time (years), ability, etc - or another way of saying ‘nearing the end of life’. As my mother ages, her ability to care for herself is reaching limitations, her strength and balance are compromised and her basic needs are a challenge to self fulfill. She requires help - help from Hospice nurses and resources, help from Hospice medications and help from Hospice provided furniture/tools.
Unfortunately, for our situation this is all still not enough. While Hospice has been an invaluable resource, more is required - beyond what the assisted living facility can provide in caretakers. The result is an additional staff of 24/7 companions to ensure she is living the best quality of life at this stage and staying safe from accidents, falls, malnutrition and bad decisions. And no, this is not normal and yes, very pricey. Overall however, the Hospice resources have been extremely helpful for me in managing this stage. Definitely something I recommend that all children with aging parents seek information about to determine when it is most helpful to activate this service for everyone’s sanity and grace during the final chapters.
