P
patrish22
Guest
I hope what I have to share is helpful. I would imagine it varies with each individual. Last October I lost my lovely daughter Grace, age 25. She made the decision not to go on a transplant list. After she was released from her last hospital visit our doctor informed us that it was time to contact hospice for care. We had the most wonderful people from our local hospice, who worked hard to keep her comfortable. She was never vented (another one of her choices). I was mostly concerned about her pain and hospice did a great job managing that. It reached a point where our home oxygen equipment was not enough for her comfort, and we made arrangements (with her permission) to go to the hospice's in-patient facility because the oxygen unit in the wall was what was needed to provide comfort. We were fortunate that our hospice was able to provide this facility. Her room was beautiful, quiet and private. She was allowed to have ANYTHING there that she wanted, including her beloved cat who was glued to her side when the ambulance came to transport her there. The room was large and had an extra bed for someone to stay over night. Her twin sister (25) and her brother (24) who also have CF were there along with her sister's husband, and brother's girlfriend. The staff took care of everything, which allowed us to just "be" with her. She told us she new it was time to die, and she was done fighting her disease, and was looking forward to getting out of her body and enjoying her life "on the other side", (which is part of our spiritual beliefs). That night she woke from sleeping and asked for some water gave me and her Dad a hug and I tucked her in. She slept from that point on. The hospice nurses watched her carefully and stayed on top of her pain meds. By that afternoon the nurse told me it would not be long and we all sat around her talking about all the fun things we shared. Her breathing became more shallow and she finally stopped breathing. It was gentle and quiet. Through this whole process I wondered what was going on in the minds of her sister & brother. They have since shared their feelings. I was grateful that her end was not an agonizing one. Most importantly, she was incharge. The folks from hospice have continued to help with the services of a wonderful grief counselor. I hope that this is helpful. I thank you for bringing up the subject because some will face this at an earlier age than others. It doesn't mean that anyone should give up their fight to be well or have a transplant. She fought and fought hard, but that doesn't always make a difference. She was just done, and I felt it was important to respect her choices, (these choices included a wonderful therapist who worked with her) as heartbreaking as it was for us. For those who are caring for an adult with CF, listening is key. She told her nurse that she was so glad to have a "non-family member" to talk to about how she felt and her decisions because she was so concerned for us. I am so grateful to everyone who has helped us, and I hope this posting helps.