JOAN’S BLOG – MONDAY/TUESDAY, MARCH 3/4, 2008 – OUR READER’S TURN

As those of you who follow my blogs are aware, last week was not one of my best (see below). I finally came to the realization that I had to relate to my husband differently than I have been doing for 37 years. He has a disease, and in order to save my sanity and keep peace in our lives, I need to understand that it is Alzheimer’s Disease that is causing his hurtful and irrational behavior, not HIM, and I must act accordingly, which should not include screaming and crying. I need to be calm, walk away, agree with him, and above all, NOT TRY TO REASON WITH HIM. I vowed to do my best.

You get to see the posts on the Message Boards, but you do not see the encouraging and supportive e-mails I receive. Last week, I received countless letters of support, but two readers sent me words that need to be shared with everyone. The first is a poem that Joyce Yates wrote when she accepted that the life-long relationship she shared with her beloved husband was over; that she would have to subsist on the memories. Although heartbreaking, it was meant to open my eyes to the fact that “letting go” is part of the process of Alzheimer’s Disease. The second was a letter from another “Joyce”, who encourages all of us to try to suspend pitying ourselves, and spend time with our spouses before it is too late.

As always, I print these with permission from the writers.

Sad thoughts etch themselves in my face,
I face another day of uncertainty
Knowing the finality of this last trip of ours
But not knowing the next crisis.

I look at your beloved face
And you are a stranger
You say you know me but
Your expression tells me that "wife" has little
Meaning to you.

An infinitesimal change has occurred in your
Demeanor
Nothing others might notice
Only I can discern that you view me differently.

You no longer look at me with the look of us
Belonging together,
No longer do you take my hand and hold me close
To  your side,
Your gaze is almost impersonal.

When I say , "Ilove you" instead of our response that
Each other always have given,
"I love you too", you now might say, "Do you?' or
"That's nice".

The most heart rending pain occurs as our love
Of 53 years slowly becomes a sweet memory of
Our past life and I accept the painful reality
That my sweetheart no longer remembers how
We once loved each other.

Never did I think that the very fabric of our
Relationship would change so drastically and with such
A finality,
And the most distressing realization is that on this earth
We will never be able to bond again and never again will
We find that special place of happiness that was ours .

I can find no consolation in this journey,
Perhaps God will in due time grant me a revelation
As to why this has happened but for now my life
Is devoid of hope that my marriage is still  intact
And that my mate will once again look at me
With love and longing…….    ©  2004  Joyce Yates

Yes, this was difficult to read, but it was meant to let us all know that we are not alone in this struggle to “let go”. Every Alzheimer Spouse faces this difficult passage, and we need to gain strength and understanding from one another. The next is an e-mail letter. 

Hi,  My name is Joyce and my Husband passed away December 14th, 2007.  Your blogs have helped me so much, I wish I had found them before he passed.  I have such guilt.  I behaved the way most all caregivers behave after a while, the attitude the resentment.  I was angry because he was adding loneliness to the equation.  I can handle most anything, just not loneliness, but he continued to sit alone in his room, and I continued on in my "pity party" for myself.  I thought we were just entering mid-stage alz, I thought each stage lasted quite a while.  I didn't know that I only had three weeks left to just enjoy his "presence".  If I could have him back again I could handle it all with a smile, because I didn't really know what loneliness means, until now.  Just to see him again would be so wonderful even if he said "who are you".  I would just give him a hug and hold him very tightly to me.  Instead of the "pity parties" I held for myself,  I wish I had gone into his room and held his hand and had a conversation with him, even if he couldn't understand me.   Bottom line to this, is that I would go through this all over again, and try to remember each day to show him the love I felt for him, If I had only known what these days would feel like!!  Now I truly am lonely.

Thanks, Joyce

We are on a difficult journey; there is no doubt about that, and we all handle it poorly at one time or another, but we do the best we can with the knowledge and understanding we have at the time. Rather than feel guilty, I think we need to learn from our experiences, and try to do better going forward. From Joyce, I have learned that I need to spend quality time with my husband while he is here.

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