IF MOM COULD ONLY SPEAK... Year 2019
My husband and I arrived in Florida this past January to, once again, spend some valuable time with my mother. We were greatly taken back when we realized how advanced her Alzheimer's had become. Mom's eyes remained constantly closed as she sat slumped over in her wheelchair. Her face remained expressionless and we witnessed her refusal of any food.
After several days I recalled what I had read the year before in mom's Heath Care Directive. As her daughter and surrogate I knew that I had to do whatever was humanly possible to carry out her wishes.
I phoned the attorney's office who, in 2007 in the state of Florida, drew up mom's directive. She redid it shortly after her younger brother passed away from Alzheimer's. After the attorneys reviewed it they advised me to reach out to hospice which I immediately did.
We met someone from hospice who felt that they could help us. They were going to take mom that evening to their facility to give her "comfort care". After some confusion with the nursing home, hospice realized that presently they could not do this. They too had to comply with the laws of Florida.
After she read moms directive we were at least fortunate to have gained the total support from the medical director of hospice . She said that she never read anyone's wishes spelled out so clearly, yet we still had many roadblocks momentarily in our way.
That evening I had a restless night’s sleep and in the morning my heart remained hopeful that we would be able to succeed in carrying out moms’ wishes.
There was no way that I would give up trying so we decided to approach the administration at the nursing home. I respectfully pleaded with them as I shared what my mother wished for, which was all legally documented. Mom's proxy was sent to their legal department and given the laws of Florida, once again we were told that there was not much they could do.
As mom started to lose more weight the doctor from the nursing home put her on 3 supplements (i.e. Ensure) and protein drinks a day. We tried to stop these drinks, yet the nursing home would not again abide to her or our wishes. Although they were compassionate and understanding I quickly realized that nursing homes are focused on keep their patients alive.
I am trying to accept what has transpired in the last few months. As one can only imagine it is very difficult. I have endured heartache watching my mother as she succumbs to this horrific disease. All I really want is for her to go to sleep as peacefully as possible.
I whole heartedly believe in "Death with Dignity" also known as assisted suicide. I believe that one has the right to leave this world when they are suffering and know the inevitable. When there is no longer any quality left in one’s life it should be their given right to decide when they wish to peacefully pass on.
Currently eight states have passed a bill allowing one to end their lives in this way. I know that this is a long battle yet as soon as New York State passes this bill, which I hope will be soon, I am committed to fight for the rights of those with Dementia. Even in the states that have passed aid in dying having Alzheimer's is not included, even if one's wishes were stated prior to when they no longer could speak for themselves.
I will begin in New York because that is where I reside. If I can help get it passed here, which would probably take years, then hopefully other states will follow. This is my mission not only for my myself, if I were to get Alzheimer's, but for all the others who suffer from this disease. Maybe one day this bill will be called "Ruthie's Law". An honor that my mom would be proud of.
This is my commitment and something I hope that many of you will join with me in this battle! Not only would I have wanted this for my mother, it is something that I wish for my loved ones and myself. It's called the freedom of choice!
If Mom could only speak what would she say...……..
"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.