To continue our celebration of National Hospice and Palliative Care Month, we asked one of our Gilchrist Kids families if they would tell us what our care means to them. Here is what Marci Scher, mother of Gilchrist Kids patient Ian said:
It took us a while to decide to bring Gilchrist into our home, after all, you hear Gilchrist and what comes to your mind…Hospice. Accepting someone has a terminal illness is one of the hardest things to do; accepting that SOMEONE is your child…unthinkable. Our journey includes this and figuring out how to make the best of an unimaginable situation led us to Gilchrist. We needed the assistance Gilchrist Kids could offer.
Regardless of being with Gilchrist for Hospice or Palliative Care, the whole person is treated; improving his or her quality of life, looking at comfort for all, making memories and allowing us to enjoy our time together. Gilchrist has been one of the best decisions we have made along our journey with Ian, having the nursing case manager has helped us to figure out some of the difficult decisions we have had to make in Ian’s care. Knowing someone is always there, regardless of what the needs are, has reduced our stress levels in an already overwhelming and stressful situation.
The social workers, child life specialists, volunteers and aides have all been there to offer support in whatever way they can. Five to six days a week, someone from Gilchrist is in our home. Child life, comes to spend time with both kids, giving them the one on one time we can’t always give. One of our next visits, we will play a family game to add to our memories. Twice a week, two different volunteers come to the house to spend time with Ian, one has even expanded her expertise to include computer games, being his hands, while the other comes and plays and sings music (the Beatles) for Ian. The social worker and nurse check in with us weekly, at least, to make sure we are all doing okay and to see what else they can do for us.
To them and to everyone else, we say keep doing what you are doing, helping us to make memories, to provide our family with everything we can and to take care of each other.