What do you think of when you hear the word hospice? Before all this, I envisioned a nursing home. I envisioned nurses and round the clock care. I remember my grandmother in her final days. That's what I envisioned.
For Scott, starting hospice means he is no longer seeking treatment for the cancer. He decided last week that he didn't want to continue doing the treatment. He tried the Avastin last week and as he went home he got sick in the car. He continued to be sick for the next several days. This was after we were told that the treatment option Scott decided to try should not cause him to be overly sick.
When you are told you have an untreatable illness and it will result in your passing, often times you begin to weigh in quality over quantity. Is taking a treatment and being sick every other week work the extra month it might give you? These are very difficult decisions and Scott did not come to it lightly. He still wishes to live, but does understand the gravity of his situation.
With all that said, when a terminal patient decides to no longer seek treatment, hospice care is the next logical step. He is now under in-home hospice care. We have met with nurses over the last few days. They delivered a bed that gives Scott the ability to sit up more easily to watch tv or play on his iPad. They bring him medications and are looking at different medications to manage his symptoms better. They offer counseling services for all of us, kids included. They are accessible 24 hours a day, 7 days a week should anything come up - big or small. They have volunteers that can come and be with Scott so if I need to be somewhere (e.g. school functions, work meeting, etc). While things have been stressful, I am thankful for the people we've met through hospice. They've been so understanding and helpful.
Scotts sleeps a lot. I'd say more of his day is spent sleeping than awake. He has been getting sick nearly everyday for over a week. He gets headaches and forgets things or confuses easily. And I’m sure it was quite evident that Scott looked quite under the weather at his party. Scott is now unable to get out of bed safely and is bedridden, requiring assistance with everything. His birthday party was likely his last outing.
We are taking things day by day. I know that now, if anything comes up, we have support through his hospice providers. I fear, though, that he isn’t going to last much longer.
With all that said, Scott had a bunch of photos taken at his party. It’s been amazing.
No comments:
Post a Comment