Lela passed away in February 2010 after a long battle with Alzheimer’s. Mom understood early what was happening to her and how it was going to end. Mom’s faith was strong, so she was more worried about us taking care of her in the advanced stages than she was about death. She would make comments like “You know this is going to get a lot worse.” or :I do not want to be a burden.” Mom was independent and could hardly fathom the thought of relying on others.
We talked about many issues openly, but it was not easy. I wanted to know what decisions to make for her before she was too sick. Mom was clear about prolonging her life artificially. She did not want a feeding tube or any other “life support” when she was nearing the end.
GET A LIVING WILL
Mom and Art had the attorney complete living wills for each of them and had the other legal documents prepared that we would someday need. It is imperative that people talk about these issues and get the legal help necessary so your wishes are documented. It is important that someone in the family knows where to find the documents so they can provide to those in the health care industry.
One of the most difficult issues was decisions to make when she approached the end of life. The legal documents are important, but she was fairly open about telling us what she wanted. I am so glad we talked about it 10 years earlier.
Starvation is one of the ways those with Alzheimer’s ultimately die.
Mom was never a big eater. She was a physically healthy person and always attentive to her appearance. As the disease worsened, her appetite declined to the point that she would not eat very much. She would always eat a Blizzard from Dairy Queen until the end. Family members visited mom regularly in the nursing home and we would try to get her to eat. My brother had the most success since he was the most patient. It takes lots of patience to get someone with Dementia to do just about anything. The feedings went from solid food to liquid, but she would not take the liquid.
When mom quit eating completely and began a rapid decline, the nursing home called one evening to inform us that they were calling an ambulance to take her to hospital for a feeding tube. My initial response was to agree, but as I ended the call, I looked at my dad and said “Mom does not want the feeding tube.” He agreed, so I made the difficult call back and asked that they cancel the ambulance and contact Hospice.
Over a decade earlier mom told us that we were to let her go when she reached the point of a feeding tube or other medical procedures to extend her life artificially. It was very hard to tell the nursing home not to take her to the hospital, but we were somewhat comforted knowing that we were carrying out her wishes.
Talk about the tuff stuff and know how to make the decisions for your loved one when they cannot make them for themselves. Obviously, you need legal documents too, but TALK.