Caregiving and the Ambiguity of Memory Loss

Caring for a loved one can cause stress in many ways. To manage stress, which we know can be dangerous to the health of a caregiver, it is first necessary to know what the problem is. Surprisingly, many caregivers of people with memory disorders or dementia reported that the main problem is not the disease but the feeling of ambiguity and uncertainty it produces.

It is a great challenge to take care of someone who is present but is not: they are physically but they are not mentally or psychologically. You feel lonely and, in a way, you are. Many caregivers have the feeling that there is a stranger in the house.

In addition to stress, disorders such as Alzheimer’s or brain trauma cause unpredictable memory losses that come and go: at times it is there and at others, it is not. This rollercoaster of absence and presence is a very stressful type of loss, which author Pauline Boss calls ambiguous loss. Unlike death, there is no official closure or validation and, in some cases, very little support from the community or religion. One feels that one has been left alone to face the situation. Even the best prepared caregivers suffer from anxiety and depression. The challenge is learning strategies to deal with this ambiguity that is so ingrained in memory loss.

Caring for someone with cognitive difficulties, with the feelings of ambiguity that arise, can cause constant sadness that can immobilize the caregiver. For example, decision-making is delayed, paperwork is delayed, and tasks pile up. Doubt, confusion, helplessness, and hopelessness set in, and the caregiver may feel distressed and depressed. Friendships are abandoned because care demands him all the time. Conflicts with the partner, children and siblings grow. Family reunions and ceremonies that held the family together are canceled or postponed. When the caregiver feels more and more isolated, the chances that they will become the prey of depression, anxiety, bullying, guilt, shame, lack of self-esteem, illness or substance abuse increase.

Tips for Coping with the Ambiguity of Memory Loss

To manage the stress of caring for a loved one, try to connect with other people: if possible, join a group either in person or online, attend a book club, social event, or faith-based group . Here are some ideas and tips that might help you:

1. Identify the problem.
Know that the real culprit that causes your stress is the ambiguity of a loved one who is here, but at the same time is not. Call it “ambiguous loss.” It is not your fault or the patient’s. It is the disease that causes the problem.

2. Think in strategic dualities.
It is better to think of strategic dualities. Instead of thinking that your loved one has to be present or absent, think that he is present and absent at the same time. That is, find a balance between two different ideas at the same time: present and also absent. This way of 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 me.”
• “I wish this was over as much as that my loved one could go on living.” 
• “I feel sad for the illness of my loved one and at the same time happy for my new grandson.”
• “I feel sad for the lost dreams and hope and at the same time happy for some new projects and goals.”

I invite you to add your own examples. This type of dual thinking will emerge more quickly if you practice it with another person.

3. Know your “family” and community information and support systems.
You have to know for sure (unambiguously) who you can talk to and count on in case you need help. Do you have someone who is like family to you? Does your community offer help and social support? Spiritual support? Recreation and rest? Information? Check out your local Caregiver Resource Center to find out what help they can offer you. Check the web: a short search for the term “caregiver” will return you to a wealth of information and online communities. If your biological family is not helping you, you may be able to form a “psychological family” that you can turn to if you need help. Talk about how to distribute tasks among the “caregiver team”. Write a plan so everyone knows what to do and when. Who will come once a week so that you can take a break and do whatever you feel like doing? Who will come one or two weeks a year so that you can take a vacation? There are several websites to help you build your community of care (see Resource List below).

4. Continue, but modify; family vacations, celebrations, and ceremonies.
Do not cancel them but simplify the meetings only with those people who interest you to celebrate anniversaries, holidays, events and religious ceremonies. Family, friends, and communities come together to celebrate life’s transitions. The human connection helps relieve stress in difficult times. It can be very helpful for you and someone with dementia to feel the spirit of life around you. This is essential to staying strong when the person in your care cannot fully connect with you. Think and talk about this: What family ceremonies did you celebrate as a couple or family before your memory loss? And now? How can you simplify family ceremonies and celebrations by adapting them to current circumstances? Younger people can be especially helpful in answering these questions because they have great imaginations and new perspectives.

5. Review family roles.
To manage the stress of caring for someone with severe memory loss, you needed to make changes in the activities that you and other family members did. Due to memory loss, changes are generated in the roles of family members. What tasks are you responsible for now? What tasks did you stop doing? How do you handle these changes? What could help? Has an agreement been reached in the family on who should play the role of caregiver? Do you adapt to change or do you think that everything should continue as before? Talk with your family about what role each plays.

Lastly, based on roles, think about how you see yourself now. You might ask yourself: Is it okay for me to hang out with friends when my partner has Alzheimer’s? Do I still feel like a son or daughter or like the father of my parents? If my partner has lost his memory, do I still feel like I’m married? What should I do?

6. Be aware of family rules.
Who can do some things in the family? Does everyone work as a team or are you expected to do all the work alone? Be aware of your family’s rules and question them, if necessary. They can be changed. Do you discuss family rules regarding race, religion, class, age, or gender? For example, is there an unspoken rule in your family such as that the caregivers should be women? Has anyone decided not to participate? Why did he do it? A new family rule about “teamwork” may be necessary so that care is not the responsibility of just one person. Include children and adolescents in the circle of information about the disease, its effects, its unclear prognosis and its need for help and to work as a team.

7. Understand that anger and guilt are normal feelings but avoid harmful actions.
Mixed emotions are the understandable result of your loved one’s memory loss, negative feelings can present themselves in the form of anger, rage, or worse, abuse, and this is unacceptable. Talk to someone, a professional or other caregiver, about your negative feelings to avoid acting out of anger. Remember, feeling angry about the ambiguity that memory loss creates is normal, but acting out of anger at the patient or at yourself is not.

8. Although it seems contradictory, think of something that makes you feel hopeful.
To stay healthy, we all need hope. When your loved one is sick and you must take care of him, you must discover something new to put your hope in it. It is useful to talk about this topic with other people, and if they are young better. They can help you imagine new projects for the future: new connections, new hobbies, new travel projects, new knowledge, new relationships.

Given the great stress of caring and the ambiguity of memory loss, what can you plan for the future with clarity and certainty? How about an outing, a firm dinner date with friends, a hobby with clear results, a TV show that you really like? New dreams and projects will emerge when you can compensate for the ambiguity with new activities with clear results, even if they are only modest.

9. Monitor your health.
Seek professional help in case:

• Feel depressed, physically ill, or hopeless.
• Feel that you or the person in your care is being hurt.
• Regularly relying on alcohol or recreational drugs.
• Discuss with your partner, children, stepchildren, or other family members and friends.
• Let him no longer take care of himself.

When caring for a person with memory loss, the stress of ambiguity increases the usual pressures on the caregiver. You have the right and the obligation to take care of yourself.

In summary, think of managing ambiguity like learning to walk in a fog. Keep moving forward, despite the stress of not knowing what to expect along the way. But at the same time, seek support and human connections to stay resilient and strong.

References:  Family Caregiver Alliance and written by Pauline Boss based on her books Ambiguous Loss (Harvard University Press, 2000), Family Stress Management (Sage, 2002), and Loss, Trauma, and Resilience (WW Norton, 2006).

• Read this post in Spanish: https://www.caregiver.org/es/resource/cuidado-y-perdida-ambigua-caregiving-and-ambiguous-loss/
• Read this post in Vietnamese: https://www.caregiver.org/vi/resource/cham-soc-va-mat-tri-nho-mo-ho-caregiving-and-ambiguous-loss/