I enrolled in hospice in March 2007 even though my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients. People make a big mistake by viewing hospice as reserved for people in their last few months of life. The word hospice is highly emotive in our culture along with expressions like “dead man walking.” As a result, people often wait too long before enrolling. I think that’s a mistake.
Our local hospice provides a weekly visit from an RN; 3x weekly visits by a CNA who helps with my bathing; a monthly visit from a MD, PT, and social worker; and an occasionally visit from a chaplain. Hospice provides such supplies as bandages, enemas, chuks (paper sheets to sit on), some meds and equipment (hoyer lift, hospital bed, etc). Our hospice offers a 24-hr emergency number to call; it is staffed by an RN who can walk you through any situations that may arise after business hours. That's a great comfort for my wife. And Medicare covers hospice expenses, so we have no copay. The people have been absolutely wonderful and they are an important part of my support team. The last time the MD visited I noted that I had been with hospice for more than 6 months. I asked him how much “overtime” I would be allowed; he said I could be in hospice as long as I’d like to. Most people think of hospice as something for the last 6-12 months of life, but no one knows how long they have and, as long as your condition deteriorates, you continue to be eligible. PALS don’t always deteriorate at the same rate, but we all know that this is not a disease that you recover from.
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Hi Tony:
I think you hit the nail on the head when you said......
"....People make a big mistake by viewing hospice as reserved for people in their last few months of life. The word hospice is highly emotive in our culture along with expressions like “dead man walking.” As a result, people often wait too long before enrolling. I think that’s a mistake....
....Remember I am not "fighting" this disease. I am trying to outwit it, gaining precious days and weeks of life by anticipating my needs."
As my sister's caregiver, it is my desire and job to secure the right tools in advance, so as to stay even a half step ahead of a disease that arms itself with indestructible weapons and launches relentless assaults on her body, mind and spirit.
One of the tools I presented to her for consideration was a good Hospice. I could see the value in knowing Hospice would be there for her, and for our family.
I could see that they would be there for her "now, future and final needs" during those inevitable assaults.
There are few organizations with such a comprehensive wholistic approach to supportive and ultimately pallitive care, which unfortunately, is the only ALS defense out there I have seen.
My sister and family know what she will need in the end, and she has chosen Hospice to provide the specialty pallative services that they offer. But a good hospice is not only a final solution as you say, and their presence in care comes with a stigma that is difficult to overcome for most.
All I can say is that in my sister's case, she looked at it not as "giving up" to accept hospice care, but rather looked at it as arming herself with yet another tool to put in the ALS toolbox.
In her case, all it took was for HER to challenge that hopice stigma and give the go ahead to work with them.
Pat (CALS, sister) to Ruth (PALS, 5/15/47);
PLS Limb Onset SX 8/11/04;
Mis-DX Spastic Paraparesis 9/22/04;
ALS Dx 1/15/08;
Accepted into Hospice 1/22/08
Life is a series of chain reactions...we don't have control over the beginning or end, but we sure as H*ll can be a catalyst somewhere along the way....all it takes is Faith AND A LOUD VOICE.
Faith and Hope are great medicine…..be sure to get your daily dose
Pat --
Thanks for your wonderful post. I'm hoping for many more like it. Please come back if you have any questions or observations about this subject or any of the other chapters in my blog.
Tony Wallace
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