Redefining 'normal' when your spouse has dementia

Question:

How can I help my mom, who is a dementia caregiver for my father, accept the fact that he is not the same man he used to be as a result of his dementia?

Answer:

Letting go of the most significant relationship of a lifetime is very difficult. But what makes it even tougher is letting go when the person you are "losing" isn’t really lost. As a dementia caregiver, your mom is caught up in a world filled with what educator and researcher Dr. Pauline Boss calls "ambiguous loss." She's lost your dad in some ways but in others he is very much present. Your dad will have moments where he is very aware and acts perfectly "normal," luring your mom into believing that he’ll emerge from the fog.

But sadly, the man she's known and loved won't reappear permanently. The hard work for your mom is to begin redefining her reality and her relationship with your dad. She will need some time while you and close friends help her accept what experts call "a new normal." As Boss explains in her book, Ambiguous Loss (Harvard University Press, 2000), "We don't cut ourselves off from a loved one, even after death, but we have to learn the most exquisite of balancing acts: how to remember what was and honor it, and at the same time commit to going on." Your mom's task is the same: cherish what was, accept what is and continue on with her life.

The Family Caregiver Alliance and Pauline Boss offer a number of suggestions that may help your mom move toward a new kind of "normal":

Spend time with friends and family in the "real" world. Connect with people who are healthy and are in the present to give you a break from the roller coaster "ins and outs" of living with someone with dementia.
Identify your problem. Understand that "ambiguous loss" is at the center of much of your stress, guilt and anger. What you're losing is often vague, changing and confusing. If you know that this is what’s going on, you can better understand what you are reacting to and cope with it.
Understand that you no longer live in a world of "either/or" choices. Making a choice that either you'll be your spouse's caregiver or not, or that there will be perfect solutions - either this or that - just isn't realistic. Your life is really about balancing two different ideas at the same time. It's about "both," instead of "either/or." For example, you can be both sad that your husband doesn't understand that the baby he's holding is his grandchild and yet feel happy while you soak up the joys of being a grandparent.
Revise family holidays and traditions. This doesn't mean canceling family gatherings, nor does it mean isolating your spouse - along with yourself as caregiver. But it does mean finding ways to simplify events. For example, consider creating a quieter space for the family member with dementia so that children running around or loud chatter among adults won't be overwhelming. Other family members can take your place for a while so you, the caregiver, can be part of the celebration.
Find something new to hope for. Caring for someone with dementia, in addition to the physical incapacities that come with the disease, is both physically and mentally wearing. Psychologists have found that hoping for something in the midst of adversity is a surefire antidepressant. Just the act of thinking about spending a little time on a hobby or developing a new one, meeting people in a support group and developing a new relationship with one of the members, looking forward to going out with friends or thinking about doing something you’ve placed on hold provides the hope to go on and the reassurance that life is worth living.

Whatever you do, help your mom take care of herself and let her know that your job is to look out for her while she looks out for your dad.