A Daughter’s Struggle                      by Lori La Bey

I was so touched by the comments of a daughter struggling as she deals with her Mother and Alzheimer’s disease, I wanted to share her comments and my response with you all.  So many people are in this exact spot and it is a painful crippling place to be.  Thank you Michelle for being so brave to write in a public form and share your true feelings with us all.  Your comments will be a gift to many. 

Here’s Michelle’s response to my post “Communicating when a person is nonresponsive”:

“My mom started hospice care about one month ago. I was her caregiver for almost 5 years – when she was aware of things, and she was placed in a nursing facility this past January. I am her POA, handing EVERYTHING. I have two sisters, one of whom visits regularly during the week.  To be honest, I rarely visit, because I just don’t want to go. She lays there and is not even aware of anything. She has been like that for almost a year, and honestly I am starting to feel like a monster because I don’t visit. I had to get these feelings out to someone who knows what having a parent with this disease is about.”

Here is my response to Michelle:

I know of the guilt and the stress you are putting on yourself. It is rare for anyone dealing with this disease not to go there at one time or another, and for some people it is through the total disease process. For me I have found comfort in just visiting, even if there is no response, or should I say not a typical response I was used to.

If there is one thing I have learned it is to NOT let the monster of judgment eat me alive. It thrives on guilt and disappointment. It is tormenting and relentless! Judgment is not ours to hand out, be it towards others or self. Please keep in mind we are typically much harsher on ourselves then others would ever imagine. Try to slam the door on the Judgment Monster before he slams you flat.

Let me say, also I have two brother who rarely go visit my Mother even though they live close. They, in my opinion have not been willing to fully feel the pain this disease causes in one’s life. I am a firm believer we can’t move forward without dealing with our feelings until we fully give into them and feel the full emptiness within ourselves.

What I’ve actually found out over time is that my Mother does respond although in different ways from what I ever saw before. BUT I also must be willing to take the time to look for these different signs. It may be in the way she responds to my voice or touch via her breathing, her facial expressions, a gesture ever so slight, or a cooing like a baby. I now find deep pleasure in being able to spot these finely tuned and ever so slight responses to my presence. It reminds me she is still in there. Someone does occupy that empty shell that looks right through me as though I don’t exist. This gift of simple connection has made me aware on a deeper level in so many areas of life. It has added so much value to every second of each day that passes before me, with me.

If we can get to this point we typically find a buried treasure which allows us to then interact from a different position. One which is not judging of ourselves, or them. We no longer focus on disappointment factors, which there are many when we look for them; but the true base of our relationship which is simple, non-threatening, and totally loving.

When and if you can get to this point you will find and feel a new freedom and appreciation for life in general. When we get out of our own way, letting go of the past as we projected it to be. We then start living in the present moment appreciating what actually is, and that which was. It no longer scares us or disappoints us. We no longer try to control the situation, the disease. The process called Alzheimer’s disease.

For any caregiver this is a difficult thing to do. The word caregiver is one we so closely associate with PROTECTOR and FIXER, especially if you are the one in “control.” The one with the power of attorney to make the decisions and care for their needs. The weight is heavy and many siblings and friends, have no clue to the burdens carried by Caregivers and those with legal power to care for loved ones day in and day out.

Actually all we can do when it comes to illness is try to provide comfort and love. Try to reduce their stresses and assure they are safe. When you break down what we can provide, it is the basic needs of happiness, comfort, and safety.

Once we acknowledge this fact and accept the reality of our new found position “caregiver,” we can then breathe a sigh of relief, knowing down deep within our own soul that which is in our control and that which is not. Once we do this, we no longer feeling like we are letting them down. We no longer worry about what others think of our ability to perform our “role” as there are no rules, no job description. Each person and situation is different and each of us can only do what we feel is in their best interest at the time, with the knowledge base we have to work with.

Once we remove our personal critic, the Monster of Judgment, we can move forward and be grateful for the oh so small pleasures life has to give us when we slow down and start looking for them.

You Michelle, like many, may never get to this point, and that is ok. My guess is though you will. By taking the step to reach out and comment on my blog, oh heck just looking and reading blogs…tells me you are ready to move forward and find peace in the light of this disease. I applaud your courageous step! Kudos to you and all you have been through and what is to come.

In hopes that peace and serenity comes your way through this disease, I will share with you that Alzheimer’s has totally changed the way I look at life. The way I live my life. In a very strange way it has been a blessing to me. It has given me a new way to connect with people on a level I never thought possible. I hope through my writing and communications with people, others may be blessed with what I have found. Hope. Hope for today and for the future. In the peacefulness of quiet moments, of Alzheimer’s disease. In the teachings of new connections and the beauty through loss and grief. For the appreciation of the all the small things I missed, being too busy looking for the big things to applaud. For the still small voice inside which says, “Lori, today was a good day. Mom was safe, pain free, and content.”

I believe this disease they call Alzheimer’s is not one any parent would choose to burden a child with unless there was a hidden gift buried in the process, an incredible lesson to learn. Look and you will find it within yourself. The strength you didn’t know was there, your powerful belief system, your intensified connection with others; are all at stake.

Say, there are some exercises that might be helpful for you, jsut click on techniques on the top of the blog.

May your God bless you and all you do each and every day. May you feel your Mother’s love even if you are not physically before her. I can tell by your writing you are a good daughter. One I am sure she is so very proud of even if she is unable to tell you.