HOSPICE

May 2011 5 months after definitive diagnosis read on... how did we get to the point where Don is under the hospice wings of care? I cannot remember how this happened I just know that one day hospice came to our home after  Don's peg tube surgery and a lovely nurse named Michelle came to see us and her natural nursing instincts told her there was a need and so she made sure Don was going to be looked out for. After Michelle talked with us she said "I want to talk to the director of Hospice care here in Keene NH and tell him about your case", the director found out how fast Don's ALS was moving and made a decision to book Don into the loving care of Hospice, does this mean Don will die soon? NO it does not, what it means is that we have SUPPORT for a terminal illness and now that Don is under the hospice wings of love if he needs them they will be there for him 24/7, what an amazing supportive team of people the hospice nurses are, we are thankful for them and their wise wisdom.

PEG TUBE DECISION

Don went for his first visit with the speech & diet therapists, the subject of "peg tube" came up, I saw the shock on Don's face as this was the last thing he thought would be discussed at this appointment.
They explained to Don that keeping his weight up was one of the most important things in fighting his ALS because the weight would also help with his lung function. They told him to think about it and that they liked to peg tube patients earlier whilst healthy enough to handle general anesthesia.
I could see the sadness & fear in his eyes talking about the peg tube as it brings the reality of what is ahead, I asked what the process was and they said he would be in hospital at least one night, he would have a longer tube for approx 8 weeks then they would turn it into a button tube so he did not have a dangling tube, he would also be able to work having this and that it was vital for giving him the nutrients he needs on a daily basis.
Don must eat eat eat he can have the most of unhealthy foods like ice cream fatty foods anything that keeps the weight up, anything you ate whilst on a diet must be completely reversed. WE WILL UPDATE YOU......