My original journal was written between 12/ 2010 through 1/2011. Over Memorial Day of 2011 a bed became available while my husband and I were up giving my sister and family a much needed break when the call came to us. We had to move and move fast or someone would take the bed. It was a very, very emotional time and took a huge toll on my sister, who was mom’s primary care-giver. Thoughts that she failed, uncertainty….. everything emotions can be – she went through. I am so glad I was there; we were able to cry together. Our husbands helped with the move and literally within 4 hours, mom was in her own room… the emotions we went through were ours, mom didn’t know who we were or where she was. By June, 2012 we were informed that she could not swallow. I’m POA, there’s a DNR in place; however I flew to TN to make sure we were all on the same page and not even an IV would be put in place. The staff doctor did non-invasive test and found blood clots in both of her legs. A catch-22, in that; they didn’t want her walking so as to not blow a clot but by not walking more clots would form. Because of the clots, we were able to get Hospice involved, a hospital bed was brought in the next day so she would not have to suffer what most every facility does, an ambulance to the hospital to die, if she were to go into distress or blow a clot. We were so relieved that mom would not have to experience any more trauma and would be allowed to die in the comfort that Hospice allows.
It’s now October, who would have guessed that her heart would still be beating and she would still be breathing?? This is a reason to tell anyone that life goes on, don’t stand around because it could be months. Mom’s intake of “creamed” food was less than 25% of what she was normally eating. She still put spoon to mouth. Whether it was just a mimic – we don’t know. This past week, she blew a clot, her ankles which we swollen to 15” and seeping water, are no longer swollen. Her face; which has been frozen now for over 5 month is worse!! She hasn’t been able to move her lips or talk for months. As of yesterday; Hospice told us that they are no longer going to get her out of her bed. They haven’t been able to bathe her since July. She no longer wants to eat and is getting no fluids; she is being kept comfortable by medication on her tongue. They turn her every 2 hours. It’s now a waiting game. We are already scheduled to drive to TN on Thursday for what should be a big birthday celebration for my brother-in-law and niece. I’m packed already as I know that when mom passes, my sister and I will need each other. There is no time-table and no one can give us one. Mom is being taken to the University of TN for research into this terrible disease, so my sister and I know that there is nothing more for us to do…. But we will suffer an emotional grieving process and we want to do it together. There will be no service; all of her “friends” haven’t called to see how she is in years. My sister and my friends are the ones that are sympathetic to our mom, but no one else. I will post when mom passes.