CAN WE SAY GOODBYE?
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 six years ago, her cognitive functioning deteriorated and we moved her into a nursing home. Fourteen years after her diagnosis, my mother who is now 94 except for her macular degeneration, is on no medication for any life-threatening conditions.
Several months ago, two members in my Alzheimer’s group suddenly lost their mothers, even though they joined the group after me. Every time this happened I questioned, why my mom was still alive after having dementia for so many years?
I know how that sounds. But please 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.
Today she is confined to a wheelchair with her eyes mostly shut closed. She occasionally utters a few words that none of us understand. Every part of her existence is taken care of by the wonderful caring aides in her nursing home.
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.
In two weeks I will be arriving in Florida where my mom is, and staying with her for eight weeks. I want to hold her hand and share with her how much I love her. I also want to let her know that it is okay for her to just "say goodbye".
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Lisa, you've asked a very tough question. An elderly friend of mine used to say that if she got "like that, just shoot me." And unfortunately she spent the last few years of her life in a fog of incomprehension. She passed away a few months ago.
ReplyDeleteMy mother was lucky to have only spent a short time needing full care before passing away.
And my father, who suffered from a different dementia longer than your mother, never reached the stage of being oblivious, before dying of other causes. A lot of his personality and talents stayed with him to the end.
Hugs, my old friend.
My sweet & dear friend, Funny your first quote from elderly friend is what my mom use to say. Love you to bunches.
ReplyDeleteWe'd say the same?
DeleteFor sure
DeleteLisa, I lost my beautiful mother to this dreaded, heartbreaking, evil and cruel disease 2 years ago. Do I sound bitter?!!! She was diagnosed at 70 years old and lived with AD for 12 long years until she had no memory of anything or anyone. I was her sole caregiver for 8 years until I eventually had to place her in an extended care facility. I chose one close to home and I spent everyday there with her. It was under the Eden Alternative and had a very homey atmosphere. We even spent all holidays there with her. My mom was truly my bff and I miss her more than words can possibly express. I was with her when she took her last breath and although in my head I know she's at peace with all her beautiful memories back again, in my heart, I'd give anything to spend just one more day or even a moment to tell her once again how much I love her and miss her. She's now my guardian angel. I hope your mother's final days are peaceful with you by her side. You will be in my thoughts and prayers. Much love, ������
ReplyDeleteI am truly sorry that you have lost your mom. Unfortunately I understand all to well this horrific disease. Sending you some big strong hugs. Lisa
DeleteYou are to be admired ���� i am so afraid to print out my experiance as i have always reached out to WCAlZ assoc. And DSS and they all make me feel non compassionate and responsible for my mothers future and to not care about myself for the NOW. What No one on the outside understands is how hard and wrong it is to force someone who genetically may become the same as the one they are caring for. To live the life before they have to. And make the judgement for pre-Alzheimer victims to feel the loss of Life's personal shine because they are forced to live in the dark and unknown along with the ones they care about. Im blabbering but your beautiful writings about your wonderful moms journey and your love just break my heart and provide hope at same time. If that is even possible, because I see No hope on my own path ������ big hugs �� xx susu C
ReplyDeleteDear Susu, As difficult as this journey is for each one of us the one thing please try to remember is to cherish whatever existence you are still able to "share' with your mom. I remember how my mom made me laugh when she acted like a silly innocent child. Now those moments are all but gone but when I think back I still can smile. Please remember that I am here for you. Lisa
ReplyDeleteHi lisa,such a horrible cruel illness. We lost our beloved dad and husband 4 weeks ago to this awful disease. In the end it was heart failure but need to take comfort in knowing hes at peace now and free from this awful disease. He was diagnosed at 66 and passed away at 72. Hes now our guardian angel. Life will never be the same without him with us. Take care and keep strong.x
ReplyDeleteKristy your dad was so young. What a tragedy. I am sorry. I also lost my dad at 73 not to Dementia but a cruel ending. I pray that one day they will find a cure . Too late for myself or loved ones but for future generations.
DeleteMy mom has suffered with vascular dementia for almost 10 years now. She is 91. I remember the beginning signs when I went to see her at the house where she lived and raised all 5 of us. I found out that she was repeatedly making cups of tea and only eating gallons of ice cream. I took her for an evaluation to Greenwich Hospital where they analyze a person's memory in an Aging division. They told me she was on a 3rd grade level, even though she graduated from high school. They gave her the tests to draw the hands on the clock, etc. She knew her family and was especially attached to me to now help her. I do not reget it, I just hate this terrible disease and how it destroyed our family. I explained to my siblings her diagnosis and they were in disbelief. My brother said and laughed and responded "how old was the lady or nurse that gave her the test? He attributed her memory loss to aging. I cried and realized I was basically in this all by myself. I found all of my mom and dad's documents, my dad had passed away in 1994. I gave my brother power of attorney, since I am a 2x cancer survivor and was afraid I may die before my mom. I wanted her to be provided for, as she and my dad provided such a wonderful upbringing to me and my 4 siblings. I found out in the will he was the Executor. My sisters never forgave me for telling him the information on our mother. They thought that because he is a bachelor with a good salary, he should pay for her home care. He of course did not agree to this. She never wanted to give up her home. Now 10 years later, she is still in her own home, with 24/7 homecare which is costing us $150.00 per day or $4500 per month. Her income is less than that. We took a home equity line of credit against her home, so she is basically living on borrowed money. I love my mother, and am thankful that she smiles when I open the door of her house to visit her daily. She knows my name most of the time, and says I am the only one that really cares for her and she does not know what she would do without me. I have faced my own personal dilemmas, cancer, loss of my fiancée, loss of my best friend, loss of job and income. It has been extremely difficult for me to hold it all together. I only turned to God and started to pray, which has helped, since that is all that I have left. I have an opportunity to travel and teach ESL all over the world, but am afraid to leave my mother for very long. So I am in a hold pattern and continue to pray. Do I stay and take care of my mom, or do I do what would make me happy. I am already 62 years of age and struggling to figure out whether to take my social security and work part time, or take a full time job. I have hired caregivers privately and through agencies, and they only last so long before they too get burned out. I spent last Friday night with my mom and stayed overnight. I could not sleep because she talked all night, often calling out for her mother. I had to change her diaper 3 x during the night. She has mobility problems and can hardly stand up. My back hurt from lifting. I love my mom, I just hate to see her like this, and often end up crying. Thanks for listening. Laura
ReplyDeleteLaura you are a saint. Reading your story gave me chills and brought tears to my eyes. I am praying for your health and for your mom. May you find the right decision for yourself. You are the only one who knows that answer. Please know that I am here for you.
DeleteThank you for sharing this post :-)
ReplyDeleteDermacol Foundation
Wish I could say "my pleasure". Thank you.
ReplyDeleteAlthough my journey was shorter (8 years), I know the feeling you speak of. It's so hard to see your parent merely existing here physically, unable to enjoy and truly live life on any level anymore. The answer is complex but I do think that for certain stages of illnesses it would provide a dignity and mercy.
ReplyDeleteLiz thank you so much for sharing with me(us). I am so sorry that you too had to experience this disease with one of your loved ones regardless of how many years. Sending well wishes. Lisa
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