Mark’s Disease Update and Hospice Beware

Mark agreed to go under hospice care about 6 months ago. In the case of ALS, agreeing to hospice has more to do with access to home health care than having a limited number of days to live. Leaving the house has become a complex effort and therefore getting to doctors appointments in downtown Chicago has become impractical. He is now using a bipap machine 24/7 to assist his inhaling and exhaling. He does have a portable version of this machine, which is amazing.  He uses other devices throughput the day to keep his symptoms  at bay and is also dependent on his feeding pump. 

The hospice company we have been using I would rate as mediocre at best. One of the aides, has been amazing as well as the respiratory therapist that they contract with. The hospice team keeps in contact with his ALS doctors but have their own medical doctor in charge. I am thankful for our Les Turner nurse from the ALS clinic who is only a phone call or text away. She has been a wonderful support and always a source of encouragement. 

We recently had a negative experience that I share as a warning to anyone who may have a loved one in hospice care. Mark began having odd symptoms such as double vision, hearing loss, bleeding easily, extraordinary fatigue and extreme swelling of the belly and lower extremities.These symptoms in a non-Hospice person would have warranted immediate attention. However his hospice nurse told us, not to worry, disease progression was most likely the cause, I consulted our ALS nurse who confirmed that NONE of those symptoms were caused by ALS progression. We sought help by asking for admission to the hospice inpatient unit. We were denied. Then his urine was accompanies by bright red blood. I called the hospice 24/7 number and was again told to not worry, such things happen as capillaries break down. I didn’t by any of this and so we went to the ER. Mark was diagnosed with a bladder infection and watched for several days for possible sepsis. 6 quarts of excess fluids were removed from his body. Thank God sepsis was prevented with IV antibiotics. However, had I followed the hospice advice I am sure the infection would have spread throughout his body. When we were release and returned home Mark reported that his vision, hearing and level of fatigue had all returned to his previously normal. We wanted to dance for joy! When he had already lost so much to also have vision and hearing issues made it nearly impossible to communicate,to have them restored was like a new lease on life!

Hospice is supposed to make a person comfortable and support them medically so they can remain in their home and not prolong or hasten their death. What we experienced however, was a failure to treat a new threatening condition.  This is an issue worth pondering. The balance of letting a disease take its course and failing to treat the person who has developed a new treatable illness. 

The culture of death hovers like a menacing storm cloud above any vulnerable life that is deemed to cost more than it is valued. Think of the unborn, especially those found to have health issues inutero. Nazis Germany is not so far away. 

Jan