Pushing the lawnmower across the yard could be a moment of private thought linked with mild physical activity. But not so when I turn to reverse my direction and find that my shadow is right behind me.
I say to Linda, "I am going to go upstairs and put up these drinking glasses." She says, "OK." Then on the way up the stairs, two short flights of five or six stairs each, I realize that she is right behind me.
I walk out of the sun room, head down the hall and go into the bathroom, responding to nature's call. And then I notice that her head is peaking around the door...just to make sure she knows where I am.
As I prepare our dinner, moving from oven to counter to sink to refrigerator and back to reach under the sink and toss away trash in the garbage can, I need about a six foot radius to move efficiently. But Linda likes to position herself about three feet away from me, leaning on the sink, watching me closely. She stands just close enough that I must constantly say "Excuse me" as I try to accomplish the task of preparing a meal, setting the table, tossing trash, washing off used utensils and dishes and putting them in the dishwasher before she can take them and put them back in the cabinet as though they are clean when rinsed.
We call it shadowing among Alzheimer's caregivers. It is a common phenomenon.
But attaching a label to the experience does not make it any more pleasant. Sometimes I want to scream. Sometimes I do say, "Linda, just back up a little so I don't bump into you!" Mainly the primal scream lives inside me. The cry that longs for space and privacy remains an inner silent sound.
This need for space amplifies the enjoyment of a little respite time away...even if it is only a solitary walk around the block or an hour at the golf driving range or occasionally a half day off while she is in Day Care.
But why the shadow? What propels her into "my space?"
The old adage "Out of sight, out of mind" came to my mind. But with a little different twist. When I am out of Linda's sight, I am in an unknown place that is beyond her mind's capacity to conceive. There is no data she has to work with. Almost all data points slip quickly from her grasp. She can not remember that I just walked out of the room. She can't hold the thought that I am going upstairs and I said I will be right back. She literally does not know any longer if I am at home or maybe in Lebanon or Sri Lanka or Pakistan. She does not know when I am coming back or if I am coming back. She does not know if this aloneness and confusion she feels right now is something that will always be there. She wonders where I am and feels insecure, because I am the rock to which her little boat is anchored.
When I am out of her sight, it drives her out of her mind. She can't stay still. She must solve this problem the only way she can. She must search for me and bring me back into her sight if possible.
I can not count the times that I have been working in my office downstairs and the door opens. Linda sticks her head in and says, with surprise in her voice, "Oh, there you are. Are you OK?" If I am talking on the phone, I just smile and nod my head. This satisfies her for the moment and she leaves the office for awhile until she needs to search for me again.
"Peek-a-Boo" is a wonderful game for little children. They are learning so much. A child may know the parent primarily by face...so if we cover our faces with our hands, we are gone. Or we may hide behind a door and jump out and say, "Peek-a-Boo!" And the child giggles. We have appeared magically from nowhere. Then suddenly, we step behind the door again and we are gone again. With this game, a little child learns that out of sight is not gone forever. We go away and then we return. Over and over this happens and the child learns trust of the parent to both go away and to return.
Now Linda is back in the "Peek-a-Boo" stage of life. But she is not learning...she is losing. No amount of experience of my going and returning can now build trust and security. The lines are running in opposite directions than that of a little child. She will never know for sure any longer if I will return when I go out of sight. So there is only one solution....
She needs to be my shadow. That keeps me near. That keeps her secure.
And that tests my limits. So when I decide that I must be away....away on a trip....away so I can work....away on a walk...it is a price she must pay. And because I know deep in her soul she loves me, she is willing to pay that price and must pay that price whether willing or not. And I need her to pay that price. Because in our times apart, I am able to regain my strength, renew my inner self, and care for my physical, emotional, intellectual, and spiritual being. And then when I return, I will be a better caregiver, able to embrace my shadow again when the two seem to be one.
I say to Linda, "I am going to go upstairs and put up these drinking glasses." She says, "OK." Then on the way up the stairs, two short flights of five or six stairs each, I realize that she is right behind me.
I walk out of the sun room, head down the hall and go into the bathroom, responding to nature's call. And then I notice that her head is peaking around the door...just to make sure she knows where I am.
As I prepare our dinner, moving from oven to counter to sink to refrigerator and back to reach under the sink and toss away trash in the garbage can, I need about a six foot radius to move efficiently. But Linda likes to position herself about three feet away from me, leaning on the sink, watching me closely. She stands just close enough that I must constantly say "Excuse me" as I try to accomplish the task of preparing a meal, setting the table, tossing trash, washing off used utensils and dishes and putting them in the dishwasher before she can take them and put them back in the cabinet as though they are clean when rinsed.
We call it shadowing among Alzheimer's caregivers. It is a common phenomenon.
But attaching a label to the experience does not make it any more pleasant. Sometimes I want to scream. Sometimes I do say, "Linda, just back up a little so I don't bump into you!" Mainly the primal scream lives inside me. The cry that longs for space and privacy remains an inner silent sound.
This need for space amplifies the enjoyment of a little respite time away...even if it is only a solitary walk around the block or an hour at the golf driving range or occasionally a half day off while she is in Day Care.
But why the shadow? What propels her into "my space?"
The old adage "Out of sight, out of mind" came to my mind. But with a little different twist. When I am out of Linda's sight, I am in an unknown place that is beyond her mind's capacity to conceive. There is no data she has to work with. Almost all data points slip quickly from her grasp. She can not remember that I just walked out of the room. She can't hold the thought that I am going upstairs and I said I will be right back. She literally does not know any longer if I am at home or maybe in Lebanon or Sri Lanka or Pakistan. She does not know when I am coming back or if I am coming back. She does not know if this aloneness and confusion she feels right now is something that will always be there. She wonders where I am and feels insecure, because I am the rock to which her little boat is anchored.
When I am out of her sight, it drives her out of her mind. She can't stay still. She must solve this problem the only way she can. She must search for me and bring me back into her sight if possible.
I can not count the times that I have been working in my office downstairs and the door opens. Linda sticks her head in and says, with surprise in her voice, "Oh, there you are. Are you OK?" If I am talking on the phone, I just smile and nod my head. This satisfies her for the moment and she leaves the office for awhile until she needs to search for me again.
"Peek-a-Boo" is a wonderful game for little children. They are learning so much. A child may know the parent primarily by face...so if we cover our faces with our hands, we are gone. Or we may hide behind a door and jump out and say, "Peek-a-Boo!" And the child giggles. We have appeared magically from nowhere. Then suddenly, we step behind the door again and we are gone again. With this game, a little child learns that out of sight is not gone forever. We go away and then we return. Over and over this happens and the child learns trust of the parent to both go away and to return.
Now Linda is back in the "Peek-a-Boo" stage of life. But she is not learning...she is losing. No amount of experience of my going and returning can now build trust and security. The lines are running in opposite directions than that of a little child. She will never know for sure any longer if I will return when I go out of sight. So there is only one solution....
She needs to be my shadow. That keeps me near. That keeps her secure.
And that tests my limits. So when I decide that I must be away....away on a trip....away so I can work....away on a walk...it is a price she must pay. And because I know deep in her soul she loves me, she is willing to pay that price and must pay that price whether willing or not. And I need her to pay that price. Because in our times apart, I am able to regain my strength, renew my inner self, and care for my physical, emotional, intellectual, and spiritual being. And then when I return, I will be a better caregiver, able to embrace my shadow again when the two seem to be one.
5 comments:
Bill, I can not imagine that I would handle a shadow as gracefully as you do. My Dad did not go through that. He did call me a lot at the office before he got into the later stages and that was sometimes a challenge and exasperating.
Once he got to the late stages, he just sat with a blank expression on his face, except when I would walk into the room, come over to him and hold his face in my hands kissing him and greeting him. I would always get the sweetest smile and usually he would pucker up to receive my kiss.
At those times, I believe he thought I was Mother because he and I were not in the habit of kissing on the mouth. But kiss we did, every time I would first see him each day.
You are so very wise to keep your profession and passion even while you are Linda's caregiver. So many caregivers give up their identity, not to mention 100% of their time and I believe that is so destructive to the mind, body and spirit.
You write beautifully. Thank you for sharing a window into your soul. You bless many by doing so.
In His Love,
Ann
Bill,
This is a very logical insight into shadowing. It makes perfect sense! I think I will learn as much from you as I have from dear Shirl!
Thank you!
Pier
Bill, I remember when Bob also seemed velcroed to me! He was so lost, so child-like, yet he was neither of those.
Perhaps, remembering the look in his eyes during that time is one reason I am so at peace now.
You are truly in my prayers. God will always be with you.
bill,
i just found your blog and want to tell you how much it moved me. you write so eloquently and from the heart. i remember a year ago when my father was my shadow as well and you captured my feelings about that so well. thank you so much for sharing yourself with others. i look forward to reading more of your posts.
God bless you and linda.
Bill,
I am so moved by your words. My words can only pale in comparison. I can say that I have just spent over an hour here with you and Linda and it has been a great source of validation and comfort. I feel as if I have taken a warm and memorable walk with a friend who understands.You are a genuine peacemaker. You have my utmost respect and blessings for you and dearest Linda. Katerin
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