Kathi wrote--First, I want to say how much i have learned from this site - both practical and about what life is like from the perspective of an amputee. I check in and read the posts every day. I am blown away by the support you offer each other. Thank you. I am a parent (1 of 4) of a 34 year old woman who had double below knee amputation, due to frostbite, one month ago. For almost 2 months before surgery she refused most of the treatment offered, to the point where the feet began to auto-amputate. She has now had the surgery, which they said went extremely well, but is still refusing treatment. She is not taking recommended meds, wearing compression stockings, doing physio, or even getting out of bed most of the time. As a performer and teacher of aerials and other circus arts, the loss of her limbs has resulted in the loss of her vocation, passion, body image...not to mention her partner, home, pet, etc. She lay in bed in a “non-responsive state“ most of the time, but gets up to use bathroom, shower occasionally, go down for a smoke, etc. I know that she is suffering terribly from grief, sadness, fear, shock, trauma, and paralyzing depression. Her family has been in every day, arranging help for her (psych, PT, OT, pain management, finances, housing, social work, etc), as well as trying to convince her to get out of the hospital for a bit, use her wheelchair more, try meds, consider ECT, eat well, and generally participate in her recovery. All to no avail. Most of the time she just lays there in physical and emotional pain, but refusing, or unable) to do anything about it. My question is this: How do we best support her at this stage? We have tried to meet her where she is at and help put the necessary people and programs in place, allowing her sad time and doing a lot for her. Often we go and sit by her bedside while she lays there not speaking and hardly moving. We are getting burned out, being at the hospital every day, fighting to get people to help her...only to have her not respond when they visit to try to set something up for her. Is it time to back off? I fear that if we do she will fall further and further behind, losing this window of opportunity to shape her stumps, etc. And, I also fear that without our constant presence, cajoling, and advocating, she will fall deeper and deeper into this paralyzing depression. Sorry this post has been so long. I so value hearing your ideas and experience, that I had to write. I look forward to hearing any suggestions or comments you may have. You guys have really impressed me with your caring and support for each other. Thanks for being there!
Posted on: Wed, 16 Jul 2014 12:00:11 +0000
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