Heather Anderson and her husband cared for her grandmother with Alzheimer’s disease and dementia for two and a half years. “Instead of confining,” they say that their experience with the disease allowed them to “grow in ways we never could have imagined.”
Read more about their experiences in an excerpt from their book, “Remember I Can’t Remember: Shifting Your Paradigm, Reapproaching Dementia/Alzheimer’s,” below.
Remember, “I Can’t Remember”
Constantly remind yourself that they can’t remember. The seemingly simple task of remembering they can’t remember will cause a paradigm shift. Do not read into it. They really just can’t remember. Take the time to consider what that means.
It means they cannot follow your lengthy explanation of what short-term memory loss is. It means they have lost their ability to manipulate you. They cannot be trained or taught to take their medicine or drink their water. They cannot remember what you just said no matter how loudly or slowly you said it.
Their forgetting does not diminish the previous value of any person, relationship, experience, or thing. We do not want to believe that we are so easily forgotten. We may get resentful and angry. We have an intense need to be acknowledged and remembered. Usually we view it as their anger lashing out with a combative spirit when, at least in part, it may be ours. They simply can’t remember.
How much of the Alzheimer’s and dementia struggle is about us? How much of their struggles come from our anxiety? We need to be willing to move toward the unknown. Accepting this is accepting their loss and our loss. It represents a shift in the relationship that we may not be ready for. That acceptance may be heartbreaking, but it is the starting point for care. Meet them where they are. Enter into their reality. Remember, it is as real to them as ours is to us.
I believe we are mistaken when we think that our arrival, or our voice, has the immediate power to pull them from a world of ghost-like vapors back to our concrete world. We have to value the unseen and at least accept the powerful effect it has on them. Our flippant disregard for what they experience unfortunately does not make it go away. Their visions are very real to them and create feelings of real joy or real sadness. Listen to them and comfort them. Respect where they are. Do not hesitate to lie. In this situation, lying makes your life and theirs so much easier.
If you are struggling with a moral position, you are going to have to let it go. They are only spending a part of their time in our reality; telling them our truths may actually be cruel and may show an inability on your part to let go. They may not remember the truths you just told them, but the anxiety those truths cause will stick with them. It may be helpful to think of dementia as “dimensia,” meaning a problem with dimensions. At times we may appear to be in contrary dimensions, both having an equal hold. The challenge is to gracefully, or at least effectively, bridge that gap.
Forgive. There is no good time for the onset of Alzheimer’s and dementia. There are often unresolved issues that need to be released. That is the work, the releasing and forgiving. Work on it. Support their dignity. It does matter how they look.
We can’t emphasize enough the power you have as a caregiver. By just obsessively doing the simplest tasks of feeding, hydrating, bathing and knowing them and their routines, you contribute more to their health than any “expert” can. You must be the advocate. Only you will know what is normal. Commit to those tasks, and you are giving the greatest gift you may ever give. Be conscious, and you will receive in equal measure. Do not hesitate to call a doctor. Be conscious of a rapid decline in physical abilities and mental clarity. For the most part, Alzheimer’s and dementia is a relatively slow disease. If you are noticing rapid changes, there may be a problem with their medication mix, oxygen levels or dehydration and/or bladder infection.
Let go of your name and expand your identity. We are afraid to leave our name. We fear leaving the old dynamic of our relationship. Our clinging solely to the roles of the past inhibits the growth and evolution our relationship. We have to trust enough to meet them where they are. Our relationship may shift from one grounded in current events and past experiences to a relationship of souls. That is a great leap. They have great value. However, it may not be obvious to everyone. It is unfortunate or just reality, but you establish the value of your loved one. You are the model. If you are attentive, compassionate and engaged in their well-being, it is much more likely that the doctors, nurses and other family members will be also. Focus on what they are, not what they are not. It is easy to see what they are no longer. Give them the gift of recognizing what they are right now. This is the last stage of a long life.
Contrary to appearances, I believe there is a lot going on. (Receiving care, understanding vulnerability, teaching you, and releasing control.) Present things as their idea…”You mentioned you needed help with your hair” etc. As a caregiver you have to be very creative. In the center of obligation, search for joy and choice and try to work from there.
Pick up a copy of Eric and Heather Andersen’s book, “Remember I Can’t Remember: Shifting Your Paradigm, Reapproaching Dementia/Alzheimer’s,” and let us know what you think in the comments below.