A caregiver sent me the following letter during the Christmas holidays about her family’s resistance to changing their traditional holiday gathering. Although the season is past, I want to share the letter and her solution with you because it can apply to other holidays, birthdays, and special occasions all during the year.
Dear Lyn: My husband has had dementia for about eight years now. Each year I’ve had to change some of our holiday traditions. I’m OK with this, but sometimes members of our family put a “guilt trip” on me because we don’t participate in lavish festivities like we’ve done in the past.
We live in the same city as our grown children. Our grandchildren are all in high school now. This year I’ve declared that attending a big celebration with all the family is out of the question for my husband and me. Everyone together at once is way too confusing and noisy for him. I’m getting “flack” from some of our family – even though they know his condition and are generally supportive.
Anyway, I’m sticking to my guns, and I’ve asked each one to come over individually during Christmas week to spend some quality time alone with my husband and me. I’ve given each person a personal invitation indicating his or her own time. I’ve stated “no gifts,” except maybe food goodies my husband especially likes. I plan on keeping it simple for everyone, including me. I’ll just serve some cookies. The times of the day I’ve asked them to come are the times that are usually the best for my husband.
Some members of the family say they’re looking forward to their own individual celebration with us. Others just can’t understand why we won’t do big things any more. I guess I’m writing to share my idea with other caregivers, and to ask you if what I’m doing is too drastic? I’ve gone to a couple of Christmas concerts and luncheons alone with my daughters and some friends. So, I’m not declaring “Bah, humbug!” – Trudy
Dear Trudy: Thank you for sharing. You’re doing what will work for you and your husband right now. Going out alone with your daughters and friends shows that you’re not isolating. Inviting each family member to have his or her own special time with you and your husband in your home also means that you’re not isolating, and it makes a great deal of sense. Being in the midst of a large celebration in another location could upset him and be no fun for you.
I applaud you for not doing things out of a feeling of obligation to others. They may be generally supportive, yet unable to relate personally to the stress you and your husband experience on an ordinary day – let alone during the holidays. Setting limits and priorities, as you are doing, is part of being a wise primary caregiver.
When progressive dementia is a factor, each year finds care recipients and caregivers experiencing different effects of the condition than the previous year. Expecting any holiday, birthday, or other special celebration to be the same every year is unrealistic. Trying to reconstruct the past doesn’t work. It’s extremely important to avoid situations and environments that could be overstimulating or confusing for your husband.
Celebrating can be done in simple, well-spaced steps. It takes courage to un-ring some old bells and traditions. What you’re doing for your husband, you, and members of your family this year is very creative. It’s not too drastic, and it should prove to be peacefully refreshing for all of you.
Your idea of suggesting each family member bring your husband a favorite food goody is also an excellent idea and considerate of your husband. It can be frustrating and embarrassing for someone with dementia to try to open presents that are elaborately wrapped, taped, and tightly tied. Gifts given in attractive open baskets are the best.
Lyn Roche is the author of “Coping With Caring” and “Sharing The Care.” She is a former caregiver, newspaper columnist, and facilitator of a weekly caregiver support group accredited by both LBDA and the Alzheimer’s Association. She can be contacted by email: firstname.lastname@example.org or write to Journey Publications, P.O.Box 433, Sebring, FL 33871.
© Journey Publications 2009