Once again, I was feeling tense with a knot in my stomach. I was preparing to leave town to speak at a conference. I was doing my utmost to ensure my mother had everything she might need.
I purchased her favorite snacks, and extra incontinence supplies. I made the special wheat bran, applesauce and prune juice concoction we use to keep her bowels moving regularly. I alerted the assisted living staff and our private caregivers. Then I sat down on the little stool beside her chair, to tell Mom.
I explained where I was going and why. She gave me her "look" -- one that says she is angry or frustrated, and answered, "Well, what do you want me to do about it?"
What I want to hear is, "Thanks for letting me know." Or maybe "Be careful and have a good time." I long to hear, "You are speaking at a conference? I am so proud of you!"
But she can't -- or won't. Sometimes I am unsure what behavior is driven by the dementia and what is her typical resentment, or intent to hurt.
You see, things have never been easy between my mother and me. We love each other. But Mom can be challenging. She can be negative, demanding and has always had a way of making you feel you were not quite good enough.
And then roles reversed and I had to become the one in charge. Intellectually, I get it. She sees me as the enforcer of her punishment, the warden of her prison. I am the mean one who urges her to take her meds and drink more fluids. I am the bully who tells her to eat two more bites. I am the enemy.
I do my best to make her comfortable. I manage her money; find qualified caregivers to assist her. I visit almost daily. I seek out the best doctors and each week I make the special bowel concoction. Yet, I still feel guilty. And I feel hurt. I can't completely block the emotional pain when she gives me 'the look' or says hateful things.
During many years of working with and advising caregivers, I heard similar stories. I know I am not alone. Guilt seems to be ever present with caregivers. I am also not alone in my determination to be different, as I age. I don't want my children to experience what I have experienced. I want to ease the burden for them. And other caregivers say the same thing.
Years ago, I found a document called The Caregiver Bill of Rights. Created by Jo Horne, it lists the "rights" of caregivers. It's fairly simple. It lists things that we caregivers have a right to experience and expect, such as: the right to take care of ourselves, the right to feel appreciated, etc.
As I began sharing this document with caregivers, many breathed a sigh of relief. A few got tears in their eyes. Some began to feel better about the tough decisions they had made. I watched some let go of guilt. These simple statements lightened their load a little.
As I walk the caregiver road myself, I am convinced we must begin to plan sooner for our old age. We must have those critical conversations with family members and significant people in our lives sooner rather than later. I also believe we must be realistic about what we want and expect. We should acknowledge what may not be possible, versus our fondest hopes.
I have heard many state emphatically they want to remain at home as they age. But I have also seen many situations where this is simply not possible, nor practical. And the guilt felt by the family members who must make tough decisions is compounded by that plea or promise made years before. Even the best planning may not foresee what the future may hold. And we should never underestimate the power of guilt, or the power of words that might ease an emotional burden.
So, I have created a new document. Just like the Caregiver Bill of Rights, it's not legally binding. It may, however, serve as an "emotional hall pass," for my family when the time comes that I am no longer logical or rational. I view it as an addition to my legally binding advanced directives.
And I am a Baby Boomer. We Boomers like to take charge, lead the pack, and change the status quo. We value individual choice and freedom. So in my efforts to take charge of things, when I may lose the ability to be in charge, here is my gift. It is for my husband who has endured my quirks, and my own kind of crazy while I am fully, cognitively intact, and for my children, the lights of my life, my greatest joy. It is my commitment, and rational promise to help them should they have to make challenging decisions about my care in the future. Here it is.
Care Recipient Commitment
- I realize that as I age, my physical and/or cognitive abilities may decline and I may no longer be able to function as independently as I would prefer. I realize at some point I may no longer be logical nor my demeanor cooperative. So now, while I am still able to think logically and be clear about my true wishes and intentions, I make the following commitment:
- I commit to having direct conversations with family members about my wishes and do advance planning such as creating a will, naming a power of attorney, making a living will in order to minimize the confusion, questions and disagreement about my care.
- I understand you love me, and that caring for me may pose a difficult and challenging task. I want to make it as easy and guilt free as possible. Know that I love you and appreciate all that you do for me.
- I expect that you will consider my wishes, planning documents and my best interests as you make decisions.
- I understand you must take care of yourselves, maintain your own interests, work and other relationships.
- I understand that the changing roles and the need for providing me with intimate and personal care may be emotionally difficult.
- I understand that finances must be considered when deciding on the best care options.
- I understand that it may not be possible for me to remain in my home in order to receive the best care.
- I understand that I should not blame you for the decline in my abilities or for my need for more care.
- I understand that it may not be possible for my family members to provide all of my direct care.
- I commit to doing all I can, to maintain a positive outlook and accept my aging and potential decline graciously and with determination to make the best of the circumstances.
Love, Jane.Am I being naive? Is it silly to think this will be helpful? I don't think so. Yes, we should arrange those legally binding documents that clearly state our wishes. But just as we might leave letters for our children to read once we are gone, or we may designate sentimental heirlooms to our heirs, this is one more way to show love and understanding and to ease emotional pain for those we cherish. True -- it's just words. But words have power. And caregiving is a tough job. Anything I can do to ease the burden for those who may have to provide care for me, I am committed to doing. I love this quote from Dr. Stephen Hoag, who wrote the book A Son's Handbook: Bringing Up Mom with Alzheimer's/Dementia. In an interview he said
"No matter what the relationship was between the parent and child -- whatever it was -- this is going to be extremely challenging because it is not logical.... You don't reason it out. What I've said to many people is we must always lead with love."
I will continue to love my mother and care for her until the end. But I am a bit stubborn (I can't imagine where I got that!) so I am going to try a little logic for my future caregivers. I can only hope it will help my family lead with love should they become my caregivers in the future.