I was thrilled at the announcement that our next ILD Support Group meeting on February 14th will feature Dr. Molly Bourne from Hospice by the Bay. We will discuss how hospice accomplishes their goal for people with advanced lung disease by providing the best quality of life possible.
I haven’t blogged at all about my Aunt Rita. She was my mom’s sister. She was eight-years older than my mom who idolized her most of her life. I could write a book about her but after taking care of her for the last ten years of her life (she was never able to have children), I learned a lot of life lessons. Sadly, they were lessons of “I will never do that” promises I made to both my husband and son. She was a difficult woman who was narcissist and petty. Her stepchildren later described her to me as, “She never forgave an unintended slight.” That was her in a nutshell.
She had a very easy life, financially, so she never had to “put her back into” anything in life. She married a man 25 years older than she was and later married again after her first husband died. She controlled the second husband with her money. So, when old age began creeping into her life, she just stopped. She sold her beloved piano, gave away all the music, quit doing needlework (a lifelong passion), and even gave up walking. It got too difficult so she stopped walking just about three years before she died. Anything that was no longer perfect or easy to do, she stopped and never looked back.
A couple of years after being bedridden, she tried to get out of bed one night to walk out of the small facility she was in. She got as far as the side of the bed when her legs broke when she put her weight on them. After surgery, she lay in the bed with seething anger for eight weeks waiting for her legs to heal. When she tried to walk again, it was painful and not easy. She refused physical therapy after a couple of tries as she would scream when they got her up on her feet.
So there she lay. For years. Being miserable.
She had Parkinson’s Disease. She was on medications that really worked for her. Since she no longer had quivering hands, she believed she no longer had the disease. No explanations could change her mind.
The doctor had recommended several months earlier that hospice become involved as it would be easier to manager her care as she began to quickly deplete. Hospice came in and made things happen quickly. Needed new meds? Done. Needed anything? Done. She was very well cared for and treated like a human being. I loved them. I loved their help.
Rita loved chocolate. I used to buy her lots of goodies for the week and even made fudge for her. The final week I saw her; I did some bookwork and paid some bills while she enjoyed some chocolate. We chatted. She was a bit confused but fine. She asked me if I ran into her parents who had just left the room before I came in. Her mom died in 1954 and her dad died in 1985.
That was a Tuesday. July 2007. On Thursday, hospice phoned to tell me that she was spiraling downhill quickly. She had contracted pneumonia and suggested that we not treat it. Her quality of life was horrible, she was miserable and a death from Parkinson’s is, apparently, a very difficult death. I told them that I would leave that decision to my mom. She and I talked and agreed that we should not treat the pneumonia. She also jumped in her car and came in to see her sister.
Mom and I sat by Rita’s bed all day on Friday and all day on Saturday and returned again on Sunday. The hospice nurses continued to come to check on her. We watched as Rita slept but we had conversations with her at times. On Sunday evening, mom had to return to her home the next morning so she said her goodbyes to her sister. We drove back home to my house.
That evening, the nurse phoned around 10:00 to tell us that Rita had died. We arrived to her bedside before the hospice doctor who had to declare her dead. She arrived shortly after us then sat and talked with us. We told her stories about all the things that Rita had done in her life. The doctor was kind and caring and in no hurry. Willing to listen.
Days and weeks then months later, mom and I would receive letters of support from hospice. There were offers of grief counseling or just someone to talk with. They were an amazing organization.
I know that one day I will experience hospice first hand. I know that they will offer Michael support and help in my management, they will treat me as a human being at all times, they will speak to me whether I can hear them or not, they will make sure that I am not in pain and they will let me died well surrounded by people who love me.
They are the angels working here on earth.
