Holding my Mother's hand while she stares at a blank future full of forgotten memories has become a normal part of my week. Alzheimer's has taken my Mother's laugh, smile, mind, and hugs and left her with an anchored body in a wheelchair - occasionally taking deep breaths as the curse continues.
There was a time when I was thankful that she was "still with us," but now that the reality of this disease has set in I pray she finds her way to her Heavenly home this evening. I find myself saying, "She's ready Lord, allow her the peace that will be found at the end of her journey." If there are streets of gold up there, I only hope they are prepared for her to ask how they were shipped from QVC. Were they today's special value?
About three times a week I run into someone who either reads about my Mom in one of my blogs or articles or knew her when she was still healthy. The most common phrases said consist of how much of a wonderful person she was and how awful Alzheimer's is. But, sometimes a friend confides in me, "I should visit her and tell her how much I love her."
Typically they don't visit. Periodically there are waves of folks who graciously sit with my Mom and hope for a glimpse of who she was. In my brain, I envision a funeral where I chastise everyone who somehow forgot about my mother. In reality, I realize we are all busy and part of the curse of Alzheimer's is that it lasts a long time, offering most of us an ongoing, burning "see you next time." There is no end. Just a slow wilting until finally mercy is given and they take their last breath.
Becoming comfortable and at peace with losing one of my best friends has been a long process. There have been multiple stages to this journey and I assume there will be many more in the future. The lingering emotions seem to be a burning anger and loss. There's not a day where I don't leave my mother's side literally cursing the disease as I walk back to my car.
Something that I can be thankful for is that my mother and I shared many beautiful moments before her memories were stolen and there's not much I have not told her that I wish I did. From what I can tell, judging by the numerous emails I have received, there are many people who do not share this luxury. Below are three things I think you should tell your parent/loved one before it's too late.
"You are a good parent/friend/spouse." My brother Don is a fantastically talented musician who wrote a song about 10 years ago that instructed the listener, "A good friend is hard to find, you can find yourself trying to find one. A good friend is hard to find, don't forget to tell them that you care." When you look at your landscape of friendships and family members how many of them know how much they mean to you?
"What is happening makes me feel like..." Before my mother lost her ability to speak about her disease, we had many conversations about Alzheimer's and what it felt like. Often times they started with me telling her, "This disease makes me so..." From there we would share in open and raw conversations that would give me insights into what she was going through and allow us a moment to bond in the battle we were sharing.
"It's okay..." Every time I visit my Mother I tell her "it's okay." It's okay if she's ready to move on to life in Heaven. It's okay that she's still here. It's okay that she has this disease that requires so much attention and finance. It's okay.
There's a peace that comes with letting someone know that anything in past that may have put up a roadblock is forgiven and today things will be okay. This journey may not be great but ultimately the moment we have right now is okay.
It's funny, I most long for the scent of flowers or cut grass when it's winter and everything is covered or gone. Similarly, I have found that we most long for the touch, smile, or conversation with a loved when they are no longer able to humor us with their presence. The beautiful thing is that if they are still here we still have time to tell them how much they mean, what they have done for us, and why they will never be forgotten - and that message is one that is never delivered too often.
David Pride, social media specialist, is spending time with his mother. He has written frankly about the struggle for his mother and himself as he deals with this disease.