Wednesday, 8 November 2017

Care Partner Wednesday--When Alzheimer's Comes Too Early



Dr. Alice Howland is a renowned linguistics professor, a mother of three grown children, a wife to a loving husband. She was living the dream when her life began to crumble. She forgot a word in a lecture, then got lost on a jog in her neighbourhood. In Still Alice,  Julienne Moore passionately portrays the denial, fear and struggle to come to terms with an impossible diagnosis. In a poignant scene, Alice and her husband are lying facing each other in bed. "I have something to tell you." she begins. "There's something wrong with me."

Any time is too early for Alzheimer's, but if the disease arrives before age 65, it's called "early onset" or "younger onset." It's the same disease, but people with this diagnosis have special challenges.

Diagnosis: It's sometimes difficult to get a diagnosis because doctors aren't looking for Alzheimer's in a younger person. Symptoms are attributed to stress, menopause or depression. It can take longer to know what's wrong, and that period of uncertainty causes its own special hell.

Responsibilities: People in this stage of life aren't elders. They still have jobs, drive cars, have children in high school and university. A diagnosis such as this changes everything, even more dramatically than it does for an elder.

Services: When services are needed, there aren't any available with their peer group. If someone with early onset needs a day program, are they going to spend the day with people in their eighties and be comfortable? Not likely.

Spouses: It's difficult to imagine the pressures on a spouse. Perhaps they go from being a joint breadwinner to the sole provider of the family. For the most part, the needs of their still dependent children are theirs to deal with. They have a job. Friends, who may care but don't understand, drop off. There are few opportunities for relaxation. All of this is apart from the increasing need of their spouse.

Friends: Care partners of an elder sometimes find their position isolating. Their friends care but have no idea how to relate to what they are going through, or how to help. How much more so if the person with the disease is a peer or the spouse of a peer? There's an added dimension, too. Friends sometimes think to themselves, "If this could happen to Alice or John, anything could happen." It may be the first time someone in their fifties is in touch with their own mortality. It's not a comfortable thought, and one solution is to stay away.

So how can you help a family dealing with early onset Alzheimer's?

It's simple, really. Be there.

Depending on the closeness of your relationship, there are plenty of opportunities. If you are friends with the person with Alzheimer's, work hard to keep the friendship as consistent as possible. Do what you used to do together until that doesn't work anymore, then do something else. Do they need stimulation more than anything? Or perhaps they need social situations. Do they need to get out of the house, and do those caring for them need a break? Think of fun, creative ideas to enjoy together.

Listen. Over a cup of coffee, or during a walk together, give them a chance to talk about what they are experiencing and how they feel about it. A listening ear which doesn't belong to their family is a gift.

If your relationship isn't close, look for ways to help the family. A homemade meal, an offer to help with yard work or take the kids to activities one night are all possibilities. Each situation is different, but the common element is caring. Obviously, be sensitive, but look for ways to express caring. Isolation and feeling that no one understands are common among care partners. Use your actions to say, "I may not understand, but I'm here."

Remember the movie? The title was brilliant. Alice was still Alice when she couldn't remember, when she wasn't a professor, when she got lost. She was Alice, a person of value, at every stage of her disease.

As is every person with Alzheimer's.

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Care Partner Wednesday--When Alzheimer's Comes Too Early

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