Because of my schedule, I'm typically at the hospice later in the afternoon and evening when Debbie is pretty much down for the count. However, today I was there at 7a.m. and actually got to see the process - the painstaking process - of waking her up, getting her to sit and talk and to take the myriad of oral medications prescribed for her. I can barely swallow those horse pill sized vitamins you buy and heaven forbid if I take it on an empty stomach...I'll feel ill immediately.
Imagine being in pain (10 on a scale of 1-10), your body won't do what your mind is telling it to, and you have to swallow eleven pills first thing in the morning. You're already nauseous, you haven't eaten any food in days and you have to get down pills for blood pressure, anxiety and nausea in addition to a host of other medications.
It's killing me because I feel our girl is slipping away, but in those 45 minutes to an hour or so, when she's not sitting there with her eyes closed and in a fog, she is 1000% lucid, has her sense of humor and can tell you exactly what she wants. For the life of us we can't figure out how she could have been running around that place with her grandkids two weeks ago and now she can barely stand. Is the cancer really spreading that fast, or in an attempt to find "comfort" is she being overmedicated? I know she hates being in a fog but sometimes the pain is just too great.
On another front, I've had a big change of heart concerning Ray. I've always deeply appreciated all he's done for my sister, despite his inconsistencies. But I've seen his actions over the past week and there is no doubt in my mind he is totally devoted to her. He has been at the hospice non-stop for 5 days and we finally convinced him to let his parents take him home for the weekend so he could catch up on his rest. In his mind my sister needs someone there 24/7 and that person was him. We had a schedule set up where between myself, my sister, my brother and Debbie's oldest son, someone would be with her from Friday evening through Sunday evening; enough time for Ray to recharge his batteries.
Friday morning, Ray spoke with the doctor at the hospice. Now Ray has been a fireman for 20 years and has been dealing with my sister and her medications for the past 8 so he has a good basic knowledge of things medical. He calls himself a "ditch doctor."
The doctor decided to changed Debbie's medications around, the hope being the new ones would help her to be more alert. Coincidentally, the hospice was changing their computer system and there was a lot of confusion. All things considered the doctor (who seems to trust Ray a great deal) said it would be best for Ray to stay with Debbie over the weekend. Couple that with the fact that she pleaded with him not to leave her, and there was no way he was going home to rest. We kept our schedule intact for the weekend so that someone was always with Ray so at least he had more opportunities for rest, even though he wasn't leaving.
My sister, DeAnn, brought Ray a little light weekend reading: the Physician's Desk Reference.
Ray was looking up Debbie's meds and cross checking them against one another for side effects and he was not happy with some of the results he found. He's got many, many questions for the doctor tomorrow. We talked and both agreed it would be best to be very tactful.
Our goal is still to get our sweet girl to my sister's, despite one of the nurses telling us the hospice might be "home." Debbie keeps asking if she is going to die there...and she emphatically does not want to. She's pretty fragile, medically, at this point so we're praying and hoping we can get her strong enough to get to DeAnn's so when she's ready to give up this fight she can go peacefully at home.
Next post: Just damn
Sigh.Thinking of you all. Many hugs, Gayle
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