Sunday, June 24, 2018

CAN ONE LIVE TOO LONG WITH ALZHIEMER'S?


CAN ONE LIVE TOO LONG WITH ALZHIEMER'S?

My mother was diagnosed with Alzheimer’s Disease at the age of 80. For the first several years of her illness, she was able to live at home with part-time caregivers. Approximately five years ago, her cognitive functioning deteriorated and we moved her into a nursing home. Fourteen years after her diagnosis, my mother is now 93(August turning 94) and except for her macular degeneration, she is on no medication for any life-threatening conditions.

Several weeks ago, two members in my Alzheimer’s group suddenly lost their mothers, even though they joined the group after me. Every time this happens I question, why my mom is still alive after having dementia for so many years?

I know how that sounds. But let me explain. When she was first diagnosed, even though we had had a strained relationship, I fell in love with her unconditionally. I devoted myself to managing her care and our relationship flourished. Any ambivalent feelings that I once had no longer seemed important and magically disappeared. We shared our laughter and acted so silly almost as if we were teenagers. But today, after 14 years with Alzheimer’s, things with mom are quite different.

What kind of life can mom now possibly have? She exists, but does she really? She no longer has any appreciation of any of the beautiful things that once surrounded her world. Memories of her husband and children are all but gone. For many years, she’s had no idea of her age, her life, her family, nor even her existence.

Mom use to love to go to museums, movies and theatre. She enjoyed her morning walks or strolling on the beach. She adored reading, had a great quest for knowledge and loved taking continuing education classes. For many years now, none of these things have been a part of her life.
Now, although she probably does not know the difference, she walks around sterile hallways passing others who are confined to wheelchairs and no longer speak. I have often said that she is the lucky one yet I now question..is she?

If she could speak or see herself through different eyes, would she want to keep on living? I believe deep in my heart that I know her answer. The answer is what I would want for myself. I believe that when someone’s quality of life disappears, decisions need to be made.

Regardless of your beliefs I am certain that we can all agree that Alzheimer’s is one of the cruelest diseases. It takes away one’s entire world as if it never existed. There is no cure and the ending can be gruesome. So, I ask you, should someone with Alzheimer’s have the right to choose to die? In several states with other diseases you do have that choice. One can decline treatment, but with Alzheimer’s there is no treatment and one can live for many years with no awareness nor quality of life.

Most of us choose not to speak about this yet it is something that as human beings should be our right. We should be able to make our own choice of how we live and when we should die. My choice has always been that I would die with dignity, through physician-assisted death if need be, in order to have some agency in the process. That is what I so heartily wish for my mother.
 
 
 


 

 
 


                                


Thursday, June 14, 2018

LONG DISTANCE CAREGIVING (INTERVIEW)


LONG DISTANCE CAREGIVING (INTERVIEW)

I was interview this week by Lori La Bey on Alzheimer's Speak about my relationship with my mother and being a long distance caregiver. I think you might find it to be quite interesting.(1 hour long)

Here is the link:  http://www.blogtalkradio.com/alzheimersspeaks/2018/06/12/long-distance-caregiving--the-struggles--gifts