Where are you? stings more now

spiralstairA year a half ago, I posted an article entitled “Where are you?” — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.

I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.

She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my Mom’s case, she goes two steps backward, and one step forward.

When she asks me when I’m coming out — I ask her if there is something she needs instead of telling her I was just there and we went to the grocery store. She asks if I can hold on, and I wait as she roots through the kitchen and comes back. By the time she returns she picks up the phone and out comes gibberish. I ask her if she has Coke.”Wait,” she asks. She returns and this time tells me she has Coke. I transition the conversation to tell her I’m on my way to pick up my daughter and what we will be doing this afternoon. 

I fight my logical mind and remind myself of the a poem someone shared with me a few months ago that I renamed the Dementia Request. Each time I gain a little more understanding. Absorbed.  

Dementia Request

Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.

Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.

Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.

3 thoughts on “Where are you? stings more now

  1. Reblogged this on Going Gentle Into That Good Night and commented:
    Early on in Mama’s dementias and Alzheimer’s Disease – as I was grappling with understanding and accepting what was happening to her mind – it occurred to me that all humans go through an initial incline, a longer period of plateau, and then a final decline.

    The decline mimics childhood in reverse, until if we live long enough we end up being like a newborn, totally helpless, totally dependent, unable to express ourselves except through the most primal language we humans have: laughter and tears.

    I always told Mama that I’d do everything possible to make sure her second childhood was better than her first one. I did my best, making mistakes along the way (just like there are no instruction manuals for the day-in, day-out parenting of a child, there are no instruction manuals for becoming a parent to your parent, so you learn as you go), but assured that the one place I did not fail Mama was in making sure she knew she was loved, she was wanted, and I wasn’t going to leave her.

    My hope is that in our simultaneous and shared journey of her taking two steps back and one step up and me taking two steps up and one step back that, in the end, my love, my care, my concern, my devotion, and my commitment was enough to make up for all the things I didn’t know, didn’t understand, and sometimes screwed up because of my own ignorance and ineptness.

    This is not a journey for the faint-hearted. Once committed, even though no one ever really knows what they’re getting into, it requires a lot of tenacity and a lot of prayer. But it also requires unconditional love, abundant mercy, infinite patience, persistent gentleness, and unfailing kindness.

    These are the life and character lessons parents learn from raising their kids. For those of us fortunate enough to complete the circle of life for our parents as they go gentle into that good night, we get the opportunity to learn these same life and character lessons.

    It is a priceless gift and one I’m thankful to have received.

  2. I was just reading this thought-provoking interview with Gaily Sheehy on Caregiver.com http://www.caregiver.com/articles/interviews/gail_sheehy_interview.htm She talks about caregiving being like a labyrinth, and at some point, many of us as family caregivers need to understand that our loved ones are on a different path than us; their path will end with their passing from this life while we must retrace our steps and move back onto the path of life. I thought it was a brilliant analogy and goes along with your staircase example. It’s a tough journey, no matter how you look at it.

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