Family Living Focus: Caregiving and Ambiguous Loss – Part II

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. 

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 were described in last week’s column and the final five are featured in today’s Family Living Focus.

As a review, here are the first four tips that were described last week.  They are followed by the remaining five tips.

1. Name your problem.
   2. Practice “both/and” thinking.
   3. Know your “family” and community information and support systems.
   4. Continue but revise family holidays, celebrations, and rituals.

5. Revise family roles.
   To manage the stress of caring for someone with severe memory loss, alterations are needed in what you and other family members previously did.  There are changes in family roles as a result of the memory loss.  What tasks are you now responsible for? What tasks have you lost?  How do you manage these changes?  What would help?  Is there agreement in the family about who should do the caregiving?  Are you resilient enough to change or do you feel you have to do it all as before?

Talk about who plays what roles in the family.  Finally, based on roles, think about how you see yourself now.  You might ask: Is it right for me to take time off to go out with friends when my spouse is suffering from Alzheimer’s disease?  Do I still feel like a son or daughter or more like a parent to my parent?  If my spouse has memory loss, do I still feel married?  How should I act?

6. Be aware of family rules.
   Who is allowed to do what in your family?  Is there a team approach or are you expected to do all the work alone?  Become aware of your family’s rules and question them.  They can change.  Do your family’s rules about race, religion, class, age, or gender get talked about?  For example, is there an unspoken rule in your family that only females can be caregivers?  Are certain people excused from helping?  Why are they excused?  There may need to be a new family rule about “teamwork” so that caregiving does not fall to one person alone.  Include children and teenagers in the circle of information about the illness, its effects, its unclear prognosis, and your need for help and teamwork.

7. Understand that anger and guilt are normal but avoid harmful actions.
   While mixed emotions are an understandable outcome of memory loss, the negative feelings can come out as anger or, worse yet, abuse – and that isnotacceptable.  Talk with someone such as a professional or another caregiver about your negative feelings to prevent acting out your anger.  Remember, feeling angry about the ambiguity in memory loss is normal, but acting out that anger against the patient or yourself is not.

8. It seems contradictory but imagine something new to hope for.
   To stay healthy, everyone needs hope.  When your loved one is ill, and you are tied to caregiving, you must discover new hope.  It helps to talk about this with other people and again, with young people.  They might help you imagine new dreams for your future new connections, new hobbies, new travel plans, new skills, or new relationships.

Given the stress from caregiving and the ambiguity of memory loss, what can you plan for the future that is clear and certain?  How about an outing, a firm date for dinner with a friend, a hobby that has clear outcomes or a TV program that you clearly enjoy?  New hopes and dreams will emerge when you can balance the ambiguity with some activities that have clear outcomes, no matter how small.

9. Check on your own health.  Seek professional help if you:

• Feel depressed, physically sick, or hopeless.
• Feel like hurting yourself or hurting or yelling at the person you care for.
• Depend too heavily on alcohol or recreational drugs.
• Fight with your spouse, children, stepchildren, or other family members and friends.
• No longer take care of yourself.

When you are a caregiver for someone with memory loss, the stress of ambiguity adds to the usual pressures of caregiving.  You have a duty and a right to take care of yourself.

In summary, think of managing the ambiguity as learning to walk in the fog.  Keep moving forward, despite the stress of not knowing what lies ahead.  But at the same time, reach out for support and human connections to stay resilient and strong.

If you would like more information on “Caregiving and Ambiguous Loss” ” 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.