The long goodbye

May 5th, 2014
By

"Where is the bathroom?" my mother asks me. She is in her own house. "Take me there, will you?"

"Sure, Mom, it's this way," as I take her hand and guide her there, then assist her with her needs.

The simple act of sitting, standing, and walking is slow now. "Thank you," she replies when we are back in the living room, where she slumps into her favorite chair by the stairs.

My heart breaks a little every day. My mother has Alzheimer's Disease. She is 84. She has a host of other medical ailments which make caregiving harder and harder with each month.

There are lots of times I cry. I cry myself to sleep. I wake up crying.

Mom & Me, 2008

Mom & Me, 2008

We were close. I love my mother. This is graded process of grieving as her condition worsens gradually. I first noticed the change three years ago. Her moods, my parents' habits, slowly but distinctly shifted.

Relatives and friends would express concern that she didn't recognize them. Obviously, I myself noticed it, and was troubled. Last spring I insisted she get tested, and the diagnosis came in.

What followed in the remainder of 2013 was a slow but steady flow of suffering in ways that I could not have anticipated. This disease has categorically affected my family and me in every aspect of life.

It has cost me time, energy, effort in trying to find the best new path for my mother. I'm sad, also, that my very young daughter has lost the grandparent she was emotionally closest to.

This is not how it was supposed to be, in my grand plan. I am supposed to be baking with my mother on the weekends and sending my kid to my parents' for sleepovers, not worrying about if Mom fell or wandered today.

Some of this stress, you can extrapolate based on the fact that there are more than five million Americans stricken with Alzheimer's, so you're probably familiar with this topic in some way.

Some of it, though, is particular to our own situation and was not even predicted by me. There is no upside. There is only downside, that keeps sliding downward.

Mom & me, 1970s

Mom & me, 1970s 

Sure, I've found emotional support. My excellent husband, some really good friends and relatives. Help came from unexpected places, too. I'm grateful for that. If it wasn't for that, some days I think my head would explode.

I also take slim solace in the fact that millions of other adult children are also struggling through their parents' degeneration in the so-called Silver Tsunami. My mother's situation isn't so extraordinary - but it's still hard.

I realize my relationship as I once knew it with my mother is over, and it's a difficult transition to accept. In its place, though, I am learning to appreciate the good moments - when she's happy, when she's having a good day, when we sit and hold hands.

It takes discipline for me to stay in the moment, but it lets me find the simple joys in our new relationship together. And so my lovely mother is still teaching me about life.

20 Responses to “The long goodbye”

  1. Ken Conklin:

    Aloha Diane. I'm sure thousands of people join me in sending our respect and profound aloha to you and your family. Thank you for the great gift of sharing your very intimate thoughts and feelings with us.


  2. Diane Ako:

    Thank you, Ken.


  3. Nanea:

    Beautiful, Di. It's so hard to watch our parents age and succumb to frailties. But the journey does teach us so much. Thanks for sharing.


  4. Masako:

    Hi Diane - Thank you for sharing your journey. I'm in a similar situation and while seeing how you are coping, I realized that I need to be more like you and accept whats happening and appreciate the good moments that I spend with her. My thoughts and prayers and with you.


  5. Chicken Grease:

    The road ahead will be rife with frustration and sorry, but, don't give up, Diane, for nothing can destroy the love you have for your mother and, best believe, your mother has for you.


  6. Fortunate son:

    Thank you Diane for sharing. It reminds many of us with elderly parents to seek the most simple moments that keep us going and that someday we will look back and appreciate and remember them when they were at their best and all the things they did for us and others.


  7. Lowtone123:

    Life is a series of changing events. People, like life, is ever changing. As people get older people are still changing, just in ways that maybe harder to accept. Growing up I saw my parents help care for my grandfather who lived to 102. I never imagined during that time that I will eventually have to help care for my parents when they reach the age where they can't care for themselves. My parents are in their 70's and in good health. My mother-in-law is in her 80's and suffers from Alzheimer's. She still has most of her long term memory but almost no short term memory. This is a source of frustration for my wife, as the youngest in her family, and as such was the closest to her mother. Her frustration stems from her difficulty in accepting that her mother is spiraling down the "Sliver Tsunami". Her mother will ask the same questions and make the same comments. I remind my wife that she not doing it on purpose and she didn't ask to be the way she is. I believe my mother-in-law knows has poor short term memory and tries to disguise it by reading signs and making comments as if she is recalling from memory. We try to make her days pleasant by spending time with her grandchildren. I try to engage her in conversation about days gone by when times were a lot more simple and care free.


  8. M:

    Hello Diane,

    Thank you for sharing.


  9. makaha wahine:

    Hi Diane, Hope you are buoyed by all of our comments. Two time this past week I caught a program on Olelo for care givers dealing with care of loved ones with Alzheimer's. Alas, both times it had already started. The lady giving the talk spoke of how she cared for her mother and how her view of dealing with the disease changed. I really need to watch it again from beginning to end. It was insightful and helpful.


  10. Masako:

    Caring for my elderly grandparents and my disabled mom has really opened my eyes. I was always one to hold the door open for wheelchairs and walkers to go through but now I will run ahead to assist if I see someone in front of me who needs assistance. I have more patience when elderly move slowly, even if I am late or in a rush.
    There was a craft fair that my mother wanted to go to, it was really crowded and I had to ask people to excuse us while trying to get through the crowd. This thoughtless guy told his friend that we need to move to let the "Cadillac" go though. I was really angry but didn't say anything. Later my mom said that maybe she shouldn't go out where its crowded, I told her that she has just as much right to be there as anyone else. People need to show more compassion, someday it might be them in that position.


  11. Kage:

    Aloha Diane.
    Thank you for sharing.

    My dad lives on the mainland and when I do talk to him on the phone I am aware of some of the early signs. It is hard that I can not be there to help him.

    I have a coworker who went through this with her mother. It helps me to talk to her on how to cope with the changes (challenges).


  12. wafan:

    Prayers and positive thoughts to you, your family, and anyone else experiencing life altering changes.


  13. Maureen:

    Aloha Diane,

    A gentle portrayal of a daughter's love and worry. Thank you for sharing. With so many of us traveling along similarly frightening roads, it does ease the burden somewhat to know we are not wandering this uncertain terrain alone. For me, the toughest hills to climb are those that require me to be the decision-maker on days when she isn't willing to switch roles.


  14. kamaaina808:

    Lucky your mom has you. After my Mom passed from cancer (another slow goodbye), my auntie put my grandma in a home because she can't deal with it. It all makes me wish I had a big place for my grandma to come to, because I would have taken her in - even though she has no clue who I am anymore. Take care & God bless.


  15. Julie:

    Di,
    You and your mother are fortunate to have each other. Your personal story, I'm sure, will affect your readers/supporters in different ways...mainly positive. You are helping me to see how important it is to stop putting everything else that makes life so busy ahead of spending time with my parents and those who mean so much to me. Time goes by too quickly. Thank you for sharing. Take care. You are a wonderful person!


  16. AnakeKanake:

    Thank you Diane for sharing your story. I rarely read this section of staradvertiser, but happened to come upon it at a time when I am also dealing the my aging parents and the declining of their health and quality of life. It's painful and heartbreaking that as adult children when we are finally over the hump of "figuring out" our own life's true passions and worth, we must now detour and tend to our parents in their time of need. I was told that I should see every moment as a gift, but i can think of much "happier/fun-ner" gifts I'd rather be getting. I was comforted by your story of love and kindness for your mom, and it reminds me to have courage in the uncertainty of the situation. Best to you and your Mom, and your ohana at large.


  17. Sisto Domingo:

    I must say this about my friend of 17+ years. This is classic
    Diane Ako. She is such a loyal, caring, loving person. She cares
    so much about those in her life and worries about them constantly, and is always so giving.
    After the station layoff’s it’s been difficult finding work,
    so Diane kept developing project’s at her job that I could work on.
    When I was forced into freelance work, I knew very little about the business side, marketing, pricing, etc. And since my so called “friends” were now competitors, no one wanted to speak freely about these things. However, Diane shared what she had learned.
    And in so many ways is a big part of why I have survived so far.
    But it’s not just me. She constantly thinks about and help’s many of her friends and family.
    She constantly brings people together. Her organization skill’s frustrate the hell out of me because I know I should be like her, but could never be that amazing.
    I say these things because most see her tough, intellectual exterior.
    And it’s very easy to miss the wonderful woman and friend I’ve come to know. I’m so lucky to have her as a friend. Her Mother is so very lucky to have her as a daughter.


  18. BlueJade:

    I felt so sad for you. I am in your situation but mom is between stage 1 and 2 with a noticeable decline this past year. The prob is that my mom was abusive so this disease has brought out all the past memories of the abuse I suffered. It was physical until I outgrew her. Otherwise throughout my entire life I was told and made to feel like a big nothing. There was cruelty in her thoughtless words and sometimes it was on purpose. Well Alzeheimer's Disease (AD) doesn't take away the nastiness. It enhanced some and reduced others. It just made me realize how really mean she was and still is. Except now she's a bent 87 year old hobbling along. Otherwise she's in excellent physical condition. Now that I've learned to stand up for her she throws tantrums like a child. I call it AD anger and yes the mood swings are worse than menopause. Everyone that knows her thinks she's so wonderful. But that is the fascade she always has shown to the world. She was a beautiful woman when younger and she was incredibly vain and was until old age catched up with her.
    I have, in spite of what I've gone thru, still do love her. I love the wonderful person she can chose to be. She will be my responsibility, at her age, she may pass before she reaches Stage 7 like your mom. But not all AD sufferers are as wonderful as your mom. Maybe becuz she wasn't I don't mourn her like you do. AD is truly the long goodbye, for in that period it may give some of us redemption and forgiveness.


  19. RMaka:

    #9- I too have only seen parts of the show but the best is at the end where the speaker takes questions and answers from her own experiences in dealing with her mom. The speaker is Frances Kakugawa, born in Kapoho, former teacher, speaker and an author, with at least one book about caregiving for a parent.
    One comment she gave that I'll never forget-(as best as I can recall :( )- was about dealing with the repeating questions, every few minutes, the exact same one: That we, the caregivers, must enter their world. And in their world, this is the first time they are asking such a question. So as best you can, try to remember that, and respond accordingly. But at the same time, try as best you can, after all, we are not perfect.
    Please excuse me if I misquoted her. And best wishes to you, Diane, and your mom.


  20. Diane Ako:

    Wow everyone, thank you so much for the kind comments. Yes, it is nice to have such positive feedback in an especially tough time. I'm touched you would think to write and / or to share your personal experience with me. Thank you so, so much. I feel the aloha right through cyberspace and I'm warmed by the support. With much aloha, Diane


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