I was recently having a conversation with a caregiver who continually referred to her mother as “her other mother.” I asked her what she meant and she explained: “I think of my mom as two people. My mother is the woman who raised me. My “other mother” is the woman living with Alzheimer’s disease who has a slightly different personality.” She went on to explain how she had to get to know her “other mother” and learn what makes her happy, anxious, sad or scared. For example, her mother never danced a day in her life but her “other mother” dances anytime she hears music – something new that makes her happy.
This observation and her stories really resonated with me and I couldn’t stop thinking about how her experience could be helpful to others in the same situation. By consciously noting the changes in her mother’s personality, she was able to manage her expectations of her mother, and it made for a less stressful situation.
Each relationship has its own unique challenges, but the one common thread for so many people caring for a loved one with Alzheimer’s or dementia is that the person they now see may no longer resemble the person they’ve known throughout their lifetime. And as the disease progresses, that person continues to change. So the best way to cope is to understand that our expectations need to change as well.
Another caregiver was recently sitting in my office and expressed his frustration because his wife wasn’t getting any better. I know he understands that this is a progressive disease and it is impossible to reverse the effects, but he still had an expectation that she could get better, and holding on to unreasonable expectations like this only leads to disappointment.
When our loved ones get diagnosed with Alzheimer’s or any other form of dementia, the diagnosis affects the entire family in very significant ways. In fact, it is often harder for the family than the patient because by the time the diagnosis is made, the patient has often already progressed to the point where he or she no longer understands the ramifications of the disease or the impact it will have on them. It’s their loved ones who witness the sad decline.
For spouses and/or children there is what we typically call a “role reversal,” where the caregiver takes over the jobs/tasks that their parent or loved one used to do. And these tasks just seem to grow and multiply. As one caregiver observed: “In addition to everything else, I had to become (my father’s) advocate, social director, protector, comforter, ally, initiator, driver, cook, secretary, financial manager, entertainer, word finder, prompter, memory jogger, shopper and clothing selector, to name just a few.” The tasks of the caregiver can be overwhelming, and equally difficult and sad, the power dynamics in the family change drastically as well.
Caregiving is physically, emotionally and psychologically draining, but if you find yourself faced with this difficult role, the best thing you can do is to manage your expectations and accept the fact that your loved one’s quality of life will deteriorate, and like the woman who got to know her “other mother,” you can save yourself a lot of stress. Acceptance can really make a huge world of difference. For example, family and friends might pull away or experience discomfort about the diagnosis because it stirs up fears about their own futures. And if you understand and except this, it is easier to bear. Just remember, people who have never been a caregiver cannot fathom how hard it is and how much your life has changed. So try your best not to take people to heart when they fail to understand.
Know however, that there are people out there who do. As you move forward, try to take advantage of resources in your community. Caregiver support groups offer valuable resources and are a great place to meet others who are experiencing the same things as you. You’ll have the opportunity to share your personal experiences, learn what to expect from others, vent and make new connections. These groups are safe and comforting environments, and many people who attend them express that they developed close friendships with others in the group. Establishing and maintaining such relationships can enhance your ability to stay both physically and emotionally healthy.
The best advice I can offer is to tell you to find a support group that can help you on your journey and to get to know your “other mother” and all she is capable of and interested in. People living with this disease often experience a loss of their inhibitions so they might be willing to try new activities, make new friends and enjoy new hobbies. Don’t make assumptions about what they want to do or what they want to eat. This is your chance to broaden their horizons and keep them social, active and engaged. If they are suddenly dancing, encourage it! Have fun and use what you learn to your advantage.
Once you know your “new normal,” try to stop expecting your old mother to be present. You might still catch glimpses of her every now and again, but as the disease progresses, her personality will most definitely change and you can prepare for it. Try to find joy in your new mother and continue to create new memories and experiences. It is a difficult journey, but remind yourself as often as you need that you have the power to make the best of it.
The Senior Center at the JCC offers free caregiver support groups at the Kaplen Adult Reach Center every second Monday of the month at 7pm; and the fourth Tuesday of each month at 10:30am. We also have a new expanded Social Adult Day program. Learn more at www.jccotp.org.
Written by Judith Davidsohn Nahary
Director, Senior Adult Services