AARP Loving Someone Who Has Dementia by Pauline Boss

Author:Pauline Boss
Language: eng
Format: epub
Publisher: Wiley
Published: 2011-11-02T04:00:00+00:00

Success Stories

Many people seamlessly adapt their usual rituals when the person who ordinarily prepared them now has dementia. The shifting of roles and tasks can be a smooth family dance in which the elderly parent now sits on the sidelines—still there, but no longer in charge. Although not all generational shifts go smoothly, there are successes, as illustrated in a friend's story:

Our family has had to revise our Christmas celebration since my Mom's stroke and resulting dementia. My sister makes the chocolate sauce (using Mom's recipe) for the ice cream my mom always made, my brother provides the holiday nuts Mom always brought, I buy the gifts for the grandchildren so Mom has something to hand to them. We, as a family, are letting go of Mom's participation in the holiday, but at the same time, we're holding onto traditions that are important to us. It also gives me hope that our traditions will continue after Mom is no longer with us—part of my “imagining new hope.”

If people are willing to be flexible and to accept some changes to accommodate illness, as Deborah and my friend and her siblings did, dementia shouldn't cheat you out of the good times. Family rituals and celebrations provide a sense of continuity and predictability, which in turn increases your sense of belonging and stability. Whether your family is biological or psychological, continue getting together. It's important that you not feel alone on this long and difficult journey.

Ideas for Reflection and Discussion

Family rituals include family dinners, bedtime routines, and weekend leisure activities; birthdays, anniversaries, and family reunions; and celebrations such as weddings and religious holidays.20 They can be elaborate or simple, but they should involve at least one other person.

Although there are no specific rituals for grieving ambiguous losses such as dementia, creating some way of marking the loss and honoring your loved one makes your loss real and allows others to acknowledge it.

Family rituals can be detrimental if they involve harmful activities or are too rigid in who can or cannot attend or participate.

Find people who will help you brainstorm new rituals—other caregivers or close friends—people who are empathic and understand what you are going through. These may be part of your psychological family.

For caregivers, family rituals show you who's on your team and who's there for you when you need help or support.

A caregiver's need for grief rituals is continuous because the losses from dementia are continuous.

Consider your culture, religious beliefs, and personal values. What fits your values and beliefs about how to grieve for a loved one who is still here?

Mark each loss with a flower, candle, song, poem, a balloon sent into the air, a paper crane sent out to sea, or a planting in your garden. Do something that symbolizes your particular loss.

Which rituals have eased your stress? Have any excluded you or been canceled?

Think about the roles you perform in family rituals and celebrations. Are they too rigid? Can your family update them to be more flexible?

List what would make your participation (and your loved one's) more feasible.

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