Looking over the Hosted Chat transcript of Music Therapist Robin Noel director of Touro's Elder Care Program, I was struck by one of her comments. She said "one thing that I have learned is that all things that are done with the Alzheimer's person have to appear as if they serve a purpose." Isn't this the truth for all of us? It's why I became involved in ASCC, to help other families through the lessons, bitter and otherwise, of Alzheimer's disease. This work creates a positive thing out of the loss, confusion and sacrifice facing me and my family. This work, this challenge is purposeful work and purposeful work helps all of us make it through those days that ask a little more than we think we possess.

Feeling useful is I feel, one of our basic, human needs, and yet how quickly it can be taken away from us. Surely Alzheimer's disease does its best to strip it away from the individual suffering with it. But how often do we, as caregivers of people living with AD contribute to this debasement as well?

Our loved one, husband, wife, sister, brother, mother, father, lover, fulfill a role in our lives. We're comfortable with that role and so are they. Alzheimer's changes everything. Little by little so we're unaware for the most part of how this great loss of purpose becomes. If we're uncomfortable with change, in denial of the degree and nature and cause of these changes we cut ourselves and our loved ones off from what's really happening to us today. We blind ourselves to their needs and our won and the ways available to meet them.

Your loved one is used to your loving acceptance, or at least to being accepted and respected, or obeyed, or however they positioned themselves in your life. Your changing reaction to them may be doubly confused as your sustained anger and/or frustration at their behavior baffles them. They may pull away, unsure at your reaction, unable to identify its source. They are no longer capable of expressing this confusion, disappointment. This pain.

Our loved ones are losing so much, including the ability to make sense of the loss they may feel each and every day. We still possess the mental flexibility to deal with our loss and reach out to help our loved ones through this unchartered territory.

Can we do it? Are we willing to put the past aside, the good and the bad, to try something new to help this person adjust to today?

In many ways, I'm fortunate. I've known my Mother-in-law mainly as a person living with AD. I don't carry old resentments, triumphs, prides of a shared past with her. It's easier for me to see her as she is today. Easier, but not always easy.

Spending time with her at our home, where she still enjoys her two (and only) grandsons, is easier when we give her something to do. Something she can fall back on, something that grounds her in the present. Something she can return to when her mind wanders. Something she can control.

Fridays I wash our clothes. Saturday and Sunday she folds our clothes, in the family room. It's an activity she enjoys, one she can leave if we go out for a walk, or play a game. But it's hers, her job, her contribution to making our life better. And that gives her something rare in her world, or our own. It gives her dignity. A job she can do and feel proud of doing. It doesn't matter what she did before, she can still help her family.

There are many ways you as family members can facilitate this: sorting coupons (if scissors are no longer an option); folding clothes, working in the garden, raking the yard (as long as the yard is fenced in and/or competent supervision is provided). A person with AD can wash (plastic) dishes, sand a table or chair, sort pens and pencils, put books on a shelf, put toys away. Look around your home. Find something and try it. If nothing else it can be a start of a conversation of sorts. Let them help you, or someone else in the way they can today.

Just remember as I do every Monday, when I resort the socks and refold the clothes, for a brief moment in time, this mundane little activity, this minuscule amount of forethought brought her joy.

And no one, no disease can take that away.

Best,

Mary Anne Mushatt
Alzheimer's Caregiver