We have been going to Southwest Medical Center in Dallas, Texas for her tests, diagnosis and procedures. She was becoming very agitated and upset every time we had to make the trip. By the time she got in and out of the car (wheelchair and walker), drove, saw Doctor, had lab work done, etc, it took 5 or 6 hours. The last appt with the surgeon (when he told her she was not a candidate for surgery) took almost 8 hours start to finish. Her appt was for 3:00 p.m. and he didn't see her until 4:15. We then had to do lab work so hit rush hour traffic on the way home. It was a nightmare for her. That was January 10. On the 11th we went to her local PCP for prescriptions recommended by the surgeon. The decision had been made that only one physician would write prescriptions and that would be her primary care physician.
When I went to get her for that Dr. visit. I sat down and very gently told her that it was her illness and I could tell how hard going to Dallas was on her. I told her that if she wanted to continue to go to SWMC we would go to Dallas every day it that's what it took but that if she was going to Dallas because it's what she thought Dad, my brother and I wanted she didn't have to. I hugged her and told her that we would do what she wanted. The expression of relief I saw on her face made my heart hurt. She teared up and asked if I was sure I wouldn't be mad if she decided not to continue to fight. I again told her that she was in charge and I would do whatever it took to make this easier on her. My Mom is 75.
She had a great visit with her pcp who is a very kind and caring young man. They talked about hospice and she decided that is the route she wants to take. On Thursday the 13th we met with hospice and they were wonderful. She and my Dad want her to stay at home as long as it is possible. So far, she hasn't had what I would call extreme pain. On Friday hospice brought a hospital bed and oxygen at home. They have set up a medication box with liquid morphine, antinausea medicine and I'm not sure what else. An Aide started coming on Monday of this week to bath her and spend a little time with her. She already loves the aide who is a very cheerful upbeat lady.
One of the biggest problems Mom is having is fluid retention in her feet, legs and abdomen. Her legs were swollen and pitting almost to her knees. Her feet looked like water balloons. Her pcp put her on lasix and it has helped for now.
I told you this because I know how hard and scarey it is to think about losing your Mom, I hurt every day. There hasn't been a day in the last month that I haven't cried and I'm not normally a tearful person. However, I want to do what is best for her right now. Your Mom may need to know that you will be okay when she is gone. Please let her know that you and the family will miss her dreadfully but that you will be okay.
Mom and I had a great talk Saturday. My grandmother died when Mom was 15. I told Mom that I was very lucky because I had her for so long. She had lived without a mother for 60 years and I was going to be without mine for a lot less than that. Mom laughed and told me that she hoped it was 40 or 50 years (I'm 54 and I don't see that happening) She seems much less anxious since she made the decision to not push for some kind of treatment.
My personality is to kick, scream and fight against something like this. I would be going to Dallas until the last day probably but that's not Mom's personality and I have to respect that.
I'm sorry if I've rambled but I hope this helps.
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