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Every disease has two faces: a medical face and a social face. The diagnosis is difficult enough, but it can seem far worse when the social face of the disease is misguided or stigmatizing. We must get behind the mask and begin to normalize the disease.
Accepting the fact that the social face of Alzheimer's disease is a mask for our fear, grief, and misunderstanding is not easy, but it is a bridge to a new beginning. It can take us to a place where we can create new memories, laugh with each other, find joy with one another, and take pleasure in some of the routine tasks we do for our loved ones. Then, instead of devastation and loss come acceptance and the will to conquer every tough day that lies ahead.
Here are some ways to build the bridge:
- Educate yourself. Learn all you can about the disease and check out the validity of the information you receive.
- Take care of yourself. Make room for your own down time. Take a walk, a nap, have lunch with a friend, start a new hobby.
- Maintain, as much as possible, your own social connections and encourage your loved one's friends to continue their visits as appropriate.
- Inquire about a support group. Find one that fits your needs and style.
- Find little adventures for you and your loved one to explore. Visit a berry patch, attend a craft fair.
- Look for social opportunities for you and your loved one as a couple.
- Seek and accept help.
- Be good to yourself. Treat yourself to a massage, a pedicure, a manicure, a movie, a new book, a bubble bath, or a hot fudge sundae.
- Be prepared. Know what is important to you and your loved one, and don't be afraid to talk to one another about the availability of help, out-of-home placements, day programs, and even end-of-life concerns.
- Don't try to do everything at once.
Taking the mask off, being a caregiver, accepting risks, learning to grow and love: None of this is easy, but the reward will far outweigh the effort.