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Health Watch: Managing Life with Alzheimer’s

About 5.3 million people in the U.S. currently have Alzheimer’s Disease, the most common form of dementia. One of the most important events benefiting research, education and other activities that support those with Alzheimer’s, their families and caregivers is the Alzheimer’s Association’s annual Memory Walk. It will be held in the Roanoke area Oct. 3, at Hollins University. For more information, visit, call 434-973-6122 or email [email protected].

While national statistics regarding Alzheimer’s and its impacts seem staggering, dealing as individuals with the symptoms and changes of Alzheimer’s can seem overwhelming for those experiencing them and for their family and caregivers.

One challenge occurs when our loved ones with Alzheimer’s – or other dementias – begin getting their facts mixed up. They “change history” or use words that don’t make sense to us. Or, they forget our name.

Our immediate inclination is to correct them but it’s almost never helpful to do that. Here’s why: first, as much as we love them and want to make them better, we can’t “fix” them. The illness and our loved one are a package deal. We can only “fix” how we deal with our loved one’s illness.

The fact is their reality is changing – it’s not the same as ours because of changes to the brain, and those changes will continue. What Mom is perceiving is the only reality she has, at least at that moment. What’s especially important to remember is that our loved ones aren’t choosing to have a different reality.

Correcting them – even though we mean to be helpful – ultimately damages our relationship with them by eroding trust. When we correct, what we’re communicating is not only that they’re wrong but that their reality is wrong, even though it isn’t under their conscious control. What’s more, it’s human nature not to trust, even to resent, those who judge us — who don’t, or won’t, accept us.

Another reason that correcting our loved ones isn’t helpful is that it leads to power struggles over who’s right and wrong. That leads to pushed buttons, and sometimes acting out – by them and us. These power struggles not only damage trust, they’re frequently about matters that, in the great scheme of things, aren’t that important.

The key point here is that trust in us is something our loved one greatly needs; the more trust they have in us, the safer they will feel as we accompany them on their journey through what must be, at least at times, a terrifying world.

Learning not to correct doesn’t mean we have to compromise who we are. (And “learning” is used here intentionally – it’s a process.) Instead, we’re asked to be neutral in our responses – our tone of voice and the words we use. Or we can choose not to respond, to just let it slide. (No fair rolling your eyes.)

If we feel we have to say something, stating our truth in a neutral way is again the key. For instance, we can say, “Well, I remember that differently.” (Flat tone, no details.) Or, “That looks blue to me” (not the color our loved one perceived).

Learning not to correct our loved not only removes the negative, it produces significant benefits. In particular, it leads to shifts in our perspective that help us gain all kinds of new and helpful insights to our loved one, including an understanding of what they’re thinking and feeling, moment to moment.

When I removed the “wrong” label from my mother’s biting and pinching, I learned that dressing her in over-the-head and front-close blouses required moving her arms in ways that hurt her shoulders, caused her pain. Because I gained that insight, I was able to create clothing for her that eliminated the arm movements producing the pain.

When she could no longer understand the words spoken to her, I realized that she relied on reading body language to understand others and was frightened when she was approached in certain ways. It became apparent that when someone put their face right in front of hers and spoke loudly and slowly, it didn’t help her understand; it scared her.

As a result, she would “act out.” It was the only way Mom knew to defend herself from what she perceived as threats or attacks. I also learned that a calm approach, gentleness and a quiet or soothing tone worked wonders.

The most valuable thing I learned was to accept her as she was, where she was, because I realized she wasn’t able to be with me where I was. After a while she realized that she didn’t have to be someone different from who she was at any moment for me to be okay. Somehow that all got communicated between us – mostly without words — and it transformed our relationship. She felt safe with me and I felt loved in a way I never had before. It’s powerful stuff.

By the way, I never did mind that during the later years of her illness, she called me “Mother”. (And quite often earlier on.)  I knew that she knew who I was. Nothing would have substituted for the way her face lit up every time I went to see her. It radiated pure joy, and in a strange way that made everything okay.

by Tamasin Roop

(Ed. Note: Tamasin Roop accompanied her mother on an 8-plus year journey with Alzheimer’s. This column covers part of one of the ‘Five ways to make life easier on you and your loved one’ – a workshop she will be teaching in the near future. Contact her at [email protected].  The Alzheimer’s Association’s local office is the Blue Ridge of Va. Chapter: Phone: 345-7600 Address: 2728 Colonial Ave.)

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