Dad has been receiving hospice care for close to 4 weeks now. In the months preceding hospice, dad experienced a significant decline in his intake of food and his ability to express himself verbally. Over the past 2 weeks, he has shown an increase in his level of alertness, oral intake and verbal expression. One word responses have been replaced with phrases or on occasion a full sentence.
Dad showed a similar reaction during his previous time on hospice; something I had talked about here: https://dancingmom66.wordpress.com/2011/08/09/bittersweet-dementia/. So how do we explain this phenomenon? Is it possible that dad’s decline is less related to his disease process than to the lack of stimulation inherent within a long-term care facility? The initiation of hospice brings with it additional personal attention. A pair of home health aides visit 1x per week to “fluff and buff” him. The hospice nurse visits 1- 2x weekly and spends 15-30 minutes engaged with dad. Other staff include a chaplain who brings communion, social worker and music therapist.
Though others might be encouraged by dad’s improvement, I am disheartened. Hospice allows those who are dying to do so with support, comfort and dignity, but in my dad’s case it may just be delaying the inevitable. With improved functioning comes the potential that dad will no longer meet the Medicare criteria for hospice coverage. A weight gain of as little as 2lbs can be a deal breaker, and we are back to square one. The services that have enhanced his life over the past 4 weeks will be ripped away, including the wheelchair that has made the biggest impact in improving his comfort.
Dad is 90 and has unquestionably lived a full life. The love of his life is gone. He can no longer participate in his own self-care. His ability to swallow is compromised to the extent that his food needs to be pureed and his liquids thickened to the consistency of honey. If I were God, I think that I would write the end of dad’s story differently.