Just months after their 50th wedding anniversary, Helene Berger’s husband, Ady, was diagnosed with Alzheimer’s. When he heard the news, he said that he didn’t want to live anymore. From that moment on, Helen was determined to find creative ways to make their lives as fulfilling for as long as possible as he battled the disease. Her journey is chronicled in Choosing Joy: Alzheimer’s: A book of hope.
Berger set out to write a book that did not follow the path of others about Alzheimer’s, which often describe its devastating effects and the inevitable declines in health. She refused to give into the disease, choosing instead to inspire him to join her in making every moment they had together meaningful.
To give her husband the best chance of a positive outcome, she ensured he had constant mental stimulation and emotional support. Even in his final year, Ady could still greet friends by name, playing the piano, enjoy a game of chess, drawing and writing notes.
“Choosing Joy suggests a path that might make the journey through any diagnosis more tolerable for both patient and caregiver,” Berger says. “I hope to inspire and empower caregivers with the knowledge that they are not helpless. They can make a difference, and they can live with joy.”
One of the sections of her book outlines 10 pathways to caregiver self-fulfillment. “They enabled me to live as fully as possible with the confines of my new role, despite the constant inner sadness – to remain at least partially connected to my world of community involvement, friends, culture and beauty,” she wrote. Read on to find out how she coped….
- Finding capable help. For the first three and a half years, she did not have any additional help. Sooner or later, you will need some back up. It should be in place she cautions if the primary caregiver becomes ill, or is injured, or requires hospitalization.
- Taking care of your mental health. During her journey, Berger went regularly to a psychiatrist who guided her through the changes in her life in a realistic, constructive way. Her doctor encouraged her to be in touch with her emotions and to focus on keeping herself whole, and not just her husband. She says, “I found it liberating to give myself permission to live as fully as possible.”
- Finding time alone. It’s important to grieve for the loss she was living through. That meant spending some time solo to reflect, whether it was going for a walk or going to the gym and not shutting out the reality of her thoughts by listening to music or books on tape while she worked out. Once she secured competent help to care for her husband, Berger would plan a limited amount of time each day away from home to be alone, or with friends.
- Focusing on what’s best for you, not on what others may think. It gave Berger freedom from guilt as she tried to live life fully if she decided to attend a concert or go out for dinner with a friend. She found that this was an important step. By enjoying herself, she felt that it was easier for others to include her in their plans because she did not adopt a “poor me” attitude. It created an inner peace for her that was reflected in her demeanor.
- Getting enough sleep. Though she aimed to get seven or eight hours of sleep a night, she found it difficult because she believed she had to accomplish everything on her agenda for the day before she could rest. Her son finally stepped in and told her to give herself a curfew and stop doing chores after 9 pm in order to give her time to relax before bedtime. With adequate rest, she felt better and had more energy.
- Maintaining adult conversations with friends. There was sadness for Berger in losing the adult conversations she had daily with her husband until he became ill. It made talking and laughing with friends and family even more important to restore that balance. “Spending time with people who saw humour in life and made me laugh gave me new awareness of the healing power of laughter,” she writes.
- Acknowledging your own feelings. Berger fought to find a delicate balance and stay whole on a daily basis. “Outwardly, I went through the motions, but the ‘harsh decree’ of Alzheimer’s brings with it an inner sadness that never entirely goes away…. There were times that I allowed myself to face my feelings – times that wiped me out but were vital to my own well-being.” She found it helpful to verbalize her feelings to family and close friends. As well, she wrote sporadically in a journal. “Once something is expressed, it doesn’t appear to be quite so ominous.”
- Understanding finances. In some partnerships, women leave money matters to their male partners. That was the case with Berger and her husband. She realized during his illness that she needed to understand more about their financial standing. As Ady’s comprehension dwindled, she had to increase her knowledge quickly. She took a basic course in an effort to prepare herself for taking over the reins of the couple’s bank accounts and investments. Berger now encourages women especially to become involved and be prepared to step up and step in as needed.
- Learning from others. She recommends observing friends who are dealing with loved ones who are ill and asking questions. Berger learned that it was ok to say no to people who required your time and energy for non-essential matters. She also came to understand that it’s okay to take your time after receiving bad medical news to make decisions. They should not be made at the height of stressful situations.
- Be clear about your priorities. You cannot do it all. It’s fine for your house not to be perfectly ordered and clean. Replies to email might take longer. “I gave myself permission to let the nonessential go,” she says.