Respite Units - Terminology I Wish I Did Not Have To Know

For most people and that includes me, Karen, daughter of Fred and Wilma, the thought of dying or caring for a terminally ill friend or family member has raised numerous fears and questions as old as humanity: I have asked myself what is a “good death”? What appropriate preparations should be made? How do I best support my dad as his life draws to its close? Yesterday, the Home Health nurse called me at school and told me that they could not do any more for my father and that they were referring him to Hospice again. The Hospice nurse, Ginger, who is a love, called me shortly after that and scheduled a meeting for this morning at 9:00. I arrived at the Meadows at 8:45 and found my mom sitting beside my dad, who was in the bed asleep, she was holding his hand. She looked up and told me he was so sick, had not eaten, and was so tired. I took her place beside him and held his hand while she went to return his breakfast plate, untouched, back to the kitchen. The two aids came and asked us to leave while they fed him an Ensure, changed, and prepared him for the day. Mom and I went to the TV room and waited. Ginger arrived a few minutes before 9 and went back to the room to see what was going on. Mom and I went to the Sun Room and talked a bit about stuff...why they could not come home, why her car was not fixed, what was wrong with daddy...on and on she droned. I told her sweetly at first that they could not come home just now because daddy needed more attention than we could give him....Hey...I have to work. I am not afforded the luxury of being a SAH caregiver. I told her the car was not fixed because she could not drive right now because of the Arecept. She balked on that one and got rather testy about her abilities to drive. She MAY be able to drive good...BUT...I can't take the chance that the alzheimers will cause her to pull another stunt like the last time...next time I may not be so lucky. I then told her that there was something wrong with daddy....did she not remember he had cancer? "Oh yes," she responded..."but it is all better now." I came back with, "No it isn't momma. He was not able to finish the chemo and the cancer is back." She was oblivious to my words and I was frustrated with her oblivion. The Hospice nurse came to the Sun Room and told me she would need to speak to me as soon as she talked to her supervisor. The aid from the Meadows said that Peggy, the manager, wanted to speak with her too...so I waited...knowing what was coming and hoping I was wrong. I was not wrong...my parents had to leave the Meadows...and could go home...with 24 hour care....which we were not able to provide this weekend. I don't know what it is about people dismissing them without some kind of warning to me. All my mom heard was that they could go home and she was off and packing all their things...and loading them into my car. While she busied herself with their things, I signed all the Hospice papers again....this time I signed a DNR (Do Not Resusitate). Do you know how hard it is to sign your name to a DNR for your father? It was tough but I did it. AT 10:30 he was moved, by ambulance, to Lakeshore Community Hospital in Dadeville, AL to a respite/palliative care unit. They are giving him morphine to keep him comfortable and if he lasts the weekend it will surprise us all. By the time we got there they had him in a bed and they were taking his vitals. There is no drip, nothing piercing his skin, just oxygen. The morphine is oral. His skin is so thin. He has several nasty lesions on his legs and back where his skin has just torn. I left my mom with him at the hospital and came home to start getting my house ready for a hospital bed and their return....possibly on Monday if we can get everything in order. This is the end of the 9 weeks at school and I HAVE to work. I am already far behind where I normally am at this time of the year. I NEED to work. My sweet friend Mary came over and we cleaned...great therapy...and almost as good as retail therapy. Her precious son, Casey, came over and hauled off an old couch, a treadmill, an old desk chair, and a rug that my dachsund has ruined by being an alpha male. The room is now very sterile looking....waiting for a hospital bed...and its new dweller. Kat and Brian went by the hospital and then came by....we ended up grabbing some supper and going back to the hospital. My dad had eaten some...they physically fed him. He slept the whole time we were there...oblivious to the fact that he had company. So now life is on a minute to minute mode. I truly do want him not to hurt anymore. I know he wants to not hurt anymore. I am a big girl...and I will survive this. Now, if only my head would tell my heart. Sigh!