Gail Gilman, Family Life Consultant, M.Ed., C.F.C.S. and Professor Emeritus, University of Minnesota
Caregiving for a loved one can cause stress in many ways. To manage the stress which we know can be dangerous to a caregiver’s health we must first know what the problem is. Surprisingly, many caregivers of individuals with memory disorders or dementia report that the main problem is not the illness itself, but the ambiguity and uncertainty it causes.
It is a difficult challenge to care for someone who is here, but not here. They are here physically but gone mentally and psychologically. You feel alone, and in some ways, you are. For many caregivers, it is as if there is a stranger in the house.
Adding to the stress, disorders such as Alzheimer’s disease or traumatic brain injury cause unpredictable memory loss that comes and goes – one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss and is what author Pauline Boss calls ambiguous loss. Unlike death, there is no closure, no official validation, and sometimes little community or religious support. You feel you are left to cope on your own. Even the strongest caregivers feel anxious and depressed. The challenge is to learn strategies to cope with this ambiguity that is so much a part of memory loss.
Symptoms of Overwhelming Stress
Caring for someone with a cognitive impairment and the ambiguous feelings that arise can create a constancy of sorrow that can immobilize caregivers. For example, decisions are put on hold, tasks pile up, chores delayed. Doubt, confusion, helplessness, and hopelessness set in, and caregivers can feel anxious and depressed. Friendships are in limbo as caregiving takes more and more of your time. Conflict increases with spouse, children/stepchildren, siblings. Family gatherings and rituals that were the glue of enjoyable family life are cancelled or changed. When a caregiver feels increasingly isolated, the possibility of depression, anxiety, abuse, guilt, shame, lack of self-care, illness, or substance abuse increases.
Tips for Coping with the Ambiguity of Memory Loss
Dr. Pauline Boss, Professor Emeritus – University of Minnesota offers nine tips for coping with the ambiguity of memory loss. The first four will be included in this week’s column and the final five will be featured in next week’s Family Living Focus.
To manage the stress of caregiving, try to connect with other people: if possible, join a support group either in person or on the Internet, attend a book club, social event, or faith-based group.
Here are some ideas, questions, and tips to help:
Name your problem.
Know that one real culprit causing your stress is the ambiguity from a loved one being here, but not here. Call it “ambiguous loss.” It is neither your fault nor the patient’s. It is caused by an illness.
Practice “both/and” thinking.
It helps to think “both/and” rather than in the extremes of “either/or.” Instead of thinking the care recipient has to be either here or gone, think of him or her as both here and gone. This means balancing two different ideas at the same time – present, and also absent. “Both/and” thinking is less stressful than continuing to search for an absolutely perfect solution.
Here are some examples:
“I am both a caregiver – and a person with my own needs.”
“I take care of both him – and myself.”
“I both wish it was over – and that my loved one could keep on living.”
“I am both sad at my loved one’s illness – and joyful with my new
grandchild.”
“I am both sad about my lost hopes and dreams – and happy about some new plans and goals.”
Now add your own examples. “Both/and” thinking may come faster if you practice with another person.
Know your “family” and community information and support systems.
You need predictability (not ambiguity) about whom you can talk to and count on for help. Have some other people become “like family” to you? Does your community offer help and social support? Spiritual support? Recreation and respite? Information support? Find out what help is available to you in your local community and county. Check the web to do a search for “caregiver” to learn about the resources available in your local community. If your biological family offers no help, perhaps you can create a “psychological family” that will be there for you when you need help. Talk about how to divide up the work among a “care team.” Make a written plan to know who will do what and when. Who will come once a week so that you can take some time off to do as you wish? Who will come for a week twice a year so that you can take a vacation from caregiving?
Continue but revise family holidays, celebrations, and rituals.
Do not cancel, but rather, simplify the gatherings with the people you care about to celebrate birthdays, holidays, and religious events and rituals. Families, friends, and communities connect to celebrate life’s transitions. Human connection can help lower your stress in times of sadness. It can help you and a person with dementia feel the spirit of life around you. This is essential to staying strong when the person you care for is not able to connect fully with you. Think and talk about this: what family rituals did you celebrate as a couple or family before the memory loss? Now? How can you simplify your family rituals and celebrations to fit the circumstances now? Young people can be especially helpful in answering these questions, because of their strong imaginations and new perspectives.
If you would like more information on “Caregiving and Ambiguous Loss – Part I” feel free to contact Gail Gilman, Family Life Consultant, M.Ed., C.F.C.S. and Professor Emeritus – University of Minnesota at waldn001@umn.edu. Be sure to watch for more Family Living Focus™ information in next week’s paper.
