Monday morning I woke with a revelation: this book has the potential of making the day a little better for those affected with a disease of dementia. I wrote, “Perhaps they would be responded to a little differently, understood a little more.” I went to bed that night with the heartbreaking realization my own father had experienced one of the worst days of his life - absent of the understanding of his needs unique to this illness.
Last week it was discovered my father had an infection. Although his condition would normally be treated in a doctor's office for you or I, doctors were telling me they would not treat my father outside a hospital setting. When dad became weak and unresponsive Monday, the support system of doctors, nurses, and hospice staff I have formed to aide me in these difficult decisions all agreed an ambulance should be called. I knew from my experiences with mom - the ER is an exceptionally scary place for those with dementia.
This would be my father’s first ride in an ambulance and only the second trip of his life to the hospital. My only consolation is that he was unresponsive during many of these traumatic events. At the end of the day, I was left asking myself: Did I put my father through all those painful tests to provide him comfort or secure answers for myself? I distinctly recall voicing these words in the process of making a decision: “At least we will have answers if he goes to the hospital.”
When Alzheimer’s disease reaches the end stages, unfortunately, we already have answers for what is happening. The brain is dying and failing to send appropriate signals to vital organs. This often causes TIA’s (mild strokes), seizures, and a variety of other life threatening conditions. At some point, it becomes necessary to change our focus. We cease looking for answers and begin focusing solely on what will provide comfort for our loved ones. This is where hospice comes in.
It is a difficult shift, but imperative for the comfort of our loved one.
Jennifer Forrester, community relations director for Oklahoma Hospice, will be accompanying us to Washington D.C. to voice the need for more resources and research. She believes this heartbreaking disease must be addressed on a much larger scale. I know from my own experience with my mother, the criteria hospice must follow to accept patients with dementia often excludes those in need of this service. My mother died without ever qualifying for hospice care.
Hospice provides palliative care and support in a patient’s home or hospice center. Jennifer sees hospice as a mission field and ministry. She wanted to be a part of an industry driven service which provides quality care. Patients on hospice no longer go to the hospital for painful tests or procedures. The conditions my mother experienced, which demanded hospital stays, would have been treated in the comfort of her home had she been on hospice.
Jennifer and her staff personally know the residents at our memory care. They provide medical care, physical care (they facilitated my father’s shower this morning), medical supplies, pastoral ministries, and support for families. Jennifer and her staff personally sit at vigil with families when those final moments come. Hospice is an invaluable resource for me - a hand to hold during these final steps of our journey. We will not be celebrating any survivors of this disease in Washington D.C. #TheyHaveAName
Currently no one survives this terminal condition.
Although I took a detour on Monday from the palliative care path my father is now on, he is back in the comforts of his home. Ultimately, the ER doctors could find no medical cause for what was happening - there was no cure they could offer. We left the hospital with no answers. I wept as I reflected on what I had put my father through. We all do the very best to make informed decisions with the information we have. At the end of the day, at times we will realize we fell terribly short.
This disease often presents impossible decisions. I am thankful for hospice and dedicated staff members like Jennifer. She states, “I want to be a part of something bigger than myself that will benefit those in the path of this terrible disease.” She will be the voice in Washington D.C. for the needs of our loved ones in the final stages of this disease. Jennifer will shine a light on this terminal condition. Originally posted 3/30/2016
For more information on hospice care visit: www.oklahomahc.com
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #CapitolHill
#AlzAdvocate #AlzFamilies #HOPE #Hospice #Palliative Care #ABCsOfDementia