“Coping with Caregiver Role Changes” – Notes from talk

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Antonio.  These are one-hour conference calls on topics of interest to caregivers and family members.  You can find information on these conference calls at caregiverteleconnection.org.  (That website isn’t working for me this morning.)

In mid-May 2017, one of the audio talks featured Evalyn Greb, LCSW, a social worker.  Her topic was coping with caregiver role changes. For long-term caregivers, circumstances will change over time as new symptoms develop for our family members.  Different coping skills are needed as things change.  Ms. Greb distinguishes between positive caregiver coping skills and negative caregiver coping skills.

Positive caregiver coping skills Ms. Greb discusses include:
– Get education about the disease
– Find available support resources
– Join a support group
– Find life for both you and your care recipient throughout the disease process
– Accept yourself as a limited human being
– Know your loved one’s behaviors are not really directed toward you

She also provides six problem-solving techniques for caregivers.

Here’s a link to the 54-minute teleconference:


Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.  See below.



Denise’s Notes from

I’m Not The Same Person Anymore: Coping with Caregiver Role Changes
Speaker: Evalyn Greb, LCSW
May 17, 2017

Definition of Coping: a behavior tool used to offset or overcome adversity, disadvantage or disability without correcting the underlying condition.

All living beings use coping skills in daily life.

Not all coping strategies are healthy.

Examples of action-based coping skills:
* Financial difficulty – get a 2nd job
* Safety – alter a dementia person’s environment or take them to daycare for supervision

Examples of emotion-based coping skills:  Reduce stress by addressing the emotions/feelings of caregiving.  There are both positive and negative coping skills.
* Positive – talk with a friend about your feelings
* Negative – pretend you don’t have stress/resentment/angry feelings about caregiving (denying or repressing feelings), alcohol, substance abuse, untreated/denied depression, etc.

The role changes caregivers have to deal with over the course of our care receiver’s disease process are unavoidable.  Support and circumstances change which forces caregivers to adapt.  Your feelings for the one you’re providing care for change over time as they change.  Those feelings can make you question your role in life.  Especially if you’re in the sandwich generation you may wonder if its time to give up working or some things you love in order to meet all the demands on you.

There was some discussion about the real medical tasks caregivers are asked to do, sometimes without proper training, including blood testing, injections, oxygen, wound dressing, medication management, and more.  This is additional stress on a caregiver’s emotions, time, and organizational skills.

Specific coping skills for caregivers experiencing this role change:

– Get education about the disease you’re caring for so you can anticipate what to expect.

– Find available resources to support your care recipient and yourself: physical, medical, social, financial, spiritual, etc.

– Join a support group, attend educational seminars, find life for both you and your care recipient throughout the disease process.

– Accept yourself as a limited human being who cannot be the sole caregiver throughout the life of your family member.

– Know your loved one’s behaviors are not really directed toward you.  They are directed toward the disease.  Often these behaviors are not a choice on their part.  They are part of the disease.

Make a plan for the future, including education about the progression of the disease you are caring for and finding resources to support your care recipient and yourself.  This reduces stress and allows you to plan for eventualities as well as medical emergencies.  Who will care for him/her if you are not available or not well?  Don’t forget to make legal and financial arrangements while your care recipient can participate in decisions about their future care, will & funeral arrangements.  Having legal documents done by the care recipient avoids family disputes.  Get help from Area Agency on Aging social worker or your religious leader in making decisions and being an objective moderator among family members.

Don’t forget to plan for that type of un-anticipate-able emergencies.  How will you transport someone who’s not ambulatory or moves very slowly to a safe place?  Keep car keys away from those with dementia so they don’t follow emergency responders instructions to move cars, follow the police car, etc. when they are incapable of doing such tasks.

Problem Solving Techniques for Caregivers:

1. Name your emotions in very specific words. “I never thought this was in my future.  These are supposed to be my golden years.”  Once voiced, you can think through how you came to this point.  How can you keep your balance and deal with your circumstances?

2. Identify things that might cause the problem and keep you from solving it.  Are you over extended?  What is your care recipient doing?  Compare what you expect of yourself with what you are reasonably able to do.

3. Brainstorm creative ideas and options.  What can you change?  How can you feel joy in caregiving?

4. Weigh the pros and cons of each option.  Change your attitude. Take better care of yourself.  Learn to set limits with yourself and your care receiver.

5. Develop a Plan.  Write it down.  Discuss it.  Rehearse it. Examples:
* I plan to catch myself when negative feelings arise and turn my thoughts toward the positive.
* I plan to take better care of myself.

6. Evaluate your plan.  Is it working?  What modifications would work better?  Examples:
* Is just having a salad daily enough taking care of myself?  Is is time to add some exercise, too?
* Am I catching my negative feelings and finding the positive?  Do I need more help/respite to improve my positive feelings?

Resources to help build your coping strategies:

In your long-term care plan needs to be, “When I need help, where am I going to get it?”

Programs are provided through your local Area Agency on Aging, including support groups, health libraries, home delivered meals and medications, educational information, legal aid for wills and trusts as well as advance care directives.  Find your local AAA at www.eldercare.gov by zip code or call 211.

Disease-specific groups help with information and caregiving tips as well as medical equipment.

Medicare.gov has webpages for caregivers, especially geared toward hospitalization and transfers from home to/from a hospital, rehab center, or care facility.

The United Health Fund, Next Step in Care (www.nextstepincare.org), has done research on family caregiving.  They have the numbers of how many are in this situation and resources for families to cope.

Question and Answer:

Comment:  At the end of the day, don’t think about what you didn’t manage to finish.  Ask yourself, “Did I do the best I could?  Did I take care of myself first?”  Really focus on looking after your own needs first because you can’t take care of anyone else well, if your own needs haven’t been met.  If you are in need of rest, food, medical care, peace of mind, etc. you will be short tempered and/or forgetful, meals are less likely to be planned and nutritious, etc. Put your own needs first, then do your best for your family member.