There was a day, a couple of months ago, when a very difficult decision was made concerning my Grandlove. My Heart had researched what services could be provided for her little boy by our local non-profit Hospice. Meeting with the pediatric nurse and discussing the monster, Leukodystrophy, brought out many feelings that we put aside during our day-to-day activities. To keep his days as stress-free as possible, we try to provide a positive environment, thus we don't address "what he used to do" and "what he won't be able to do" very often. It's not that we don't realize that our time with this sweet, little boy is very limited; it's just that we don't want to focus on the sadness. Our nurse listened with her heart and gave us her strength to get through that meeting.
During that initial intake meeting, his school called that he was sick. So not only was my Heart starting Hospice for her son, but she decided that school was just too much for his energy level. We finished the meeting with the wonderful nurse and then picked up our little guy from the school. Grieving happened in the day; grief for not being able to have the "normal" experience of school and grief for the fact that Hospice was necessary in his little life. That hit me very hard and I didn't know how I would handle Hospice coming by to provide services to Grandlove and us.
Well, my misgivings were very quickly dissolved when the first visit occurred. In the door two wonderful souls came wrapped in the bodies of two nurses that would provide relief to this tired family. Medication has always been a major "headache" for us because of the complexity of the prescriptions. No more would we have to stand in the lines, wait for the compounding, keep track of the interactions or any other unlimited stressors we have endured. Hospice nurses call in the prescriptions and the pharmacy delivers the medicine to the front door. Sounds like a minor thing, but anything that could take a burden away from us was a welcomed relief.
Relief from the craziness of local pharmacies that don't "get" what is needed for our little guy, is a very appreciated gift from Hospice.
We discussed all of our medical decisions with the Hospice workers (nurses, doctor and social workers) to make sure that the preventative procedures we wanted, could be done. What a relief to know that things like flu shots, physical therapy, speech therapy, occupational therapy and botox injections could be administered, because we are all in the fight for quality life for our little one. Amazingly, when the Grandlove gets hit hard by respiratory situations, the nurse comes out, no matter what time they are called. No more ER visits; no more exposure to everything in hospital waiting rooms; no more having to "teach" medical personnel about Leukodystrophy; and no more questioning the care that was given at the ER.
Freedom from worry, is a wonderful gift that we have received from Hospice.
During the visits from the nurses, volunteers, social worker, and doctor we find that these people are focused on the whole family's needs. We laugh much more than we cry, because of Hospice. They are here for us for anything that we need to make the Grandlove's life richer, more comfortable and as pain-free as possible. I don't know about all Hospice situations, but I tell you Hospice of South Texas workers have taken so much stress from our lives. No they can't cure our sweet boy, but they can do so many wonderful things in our lives. If they could take our heartache away, I know they would, but since that is impossible, then they have joined us on our journey.
Hospice has joined with us and we will never be alone, no matter how scary this whole process can get. Our Angels, our Hospice workers wrap up our breaking hearts with their wings and let us know that they are with us.