We are in the seventh month of hospice end/time care for my mother. When they first came on board, Mom was so thin, frail and weak that they estimated that we had about a month left. They also gave us a book and sheets of paper outlining all sorts of signs and symptoms to chart her progression.
Everything they gave us turned out to be wrong, and basically excaberated the roller coaster ride we were already on. We went through a long, arduous grieving process while she seemed to decline. She presented with many of the symptoms they warned us to expect. There were four distinct occasions where myself and several of the caregivers felt that death was imminent.
Yet today Mom has stabilized, is doing "well" (although she continues to stay bed-bound and remain frail and thin), she's eating more now and has shown marked improvement in a number of areas. None of which hospice had predicted. Just as we went through the whole cliff-hanging grieving process while we weathered every sign and awaited the end that seemed so near, now we have to re-align our thinking to plan for a possible long haul. Every end-time sign of "significance" has come and gone, and while I understand the need to know what to expect - (I was there - believe me!), I can also tell you from this other side that sometimes knowing what to expect can make things more torturous. You can't really prepare, and if signs come and go like they have with my Mom, it will only increase your level of distress. Things that seem significant may turn out to mean nothing - that is a lesson we have certainly learned, and I would encourage you to throw out any hospice checklists or books you may have, and learn to take it one day, one hurdle at a time.
It's taken seven long months to reach this conclusion, but we are alot more well-adjusted and at peace for it. I'm praying the same for all of you as well.
Ken
On 8/2/2007 Myfriendhope wrote:
Hello. Anyone that can give advice/insite, PLEASE DO!!!! My dear friend (52) was Dx with small cell lung in Jan. She is a live wire. Her husband, who has no family, etc is besides himself. She has been through everything, now mets to lung, brain, etc. Chemo stopped. She started hallucinating & turned a funny walnut color 10 days ago, was hospitalized. Drove the RN's NUTS with her antics. But they were wonderful; despite having to put her in straight jacket (which she figured out how to get out of), many escape attempts (they put baby bracelet on her). She did not sleep or eat for 6 days. A GREAT Hospice pain doc took over & said she was on to many meds & reduced them. She finally became lucid & was discharged (yesterday). Here's the problem: husband has come to terms with it all and is a prince and knows that there is not much time left. Hospice came today for "the talk"- will stop in to check every week. Also brought meds & O2 tanks. My friend sounds great - 1st day home. In fact, she feels so good that she is talking about going on all of these trips, like everything is fine and the years to come. Her husband can barely hold back the tears because he knows. Is this behavior "normal"? They are my best friends & I am there every step of the way (& know how to use the computer). He is afraid to travel but dosen't know what to say or do. What happens next; what can we expect as far as cognitive progression? He is a mess. Thank you for your responses-this site is wonderful.