Have you heard of the term “care partner”? A new book describes why dementia caregivers often find it more fulfilling to think of themselves not as care “givers” but as care “partners.”
If you care for a person with Alzheimer’s disease or another dementia, I highly recommend a short but comprehensive new guide called “I Care: A Handbook for Care Partners of People with Dementia” (Balboa Press, 2014) by dementia care experts Jennifer Brush and Kerry Mills. According to the authors, a care partner is someone who receives as well as gives care and affection. While care “giving” can seem one-sided (and never-ending), a care “partnership” is reciprocal and rewarding.
Are “Care Partnerships” Really Possible?
When I first started caring for my mother, Judy, 10 years ago, I felt that all I was doing was giving—my time, energy, and patience—around the clock. I would have resisted the idea that my mother, who seemed much diminished with early-stage dementia, had anything to give back to me. For a while, I even thought of her as my third child (which I soon learned was not a great idea). I assumed that my job as caregiver meant doing things for Mom: running errands, taking her to the doctor and emergency room, making sure she had enough to eat and clean clothes to wear, paying her bills. But as a caregiver is quoted as saying in “I Care,” “to become a care partner, one first has to be present. This is far different from just being there.”
Care partners are more likely to sit down and pay close attention to the feelings and needs of their partner, and to their own feelings and needs—in short, to accept the present moment and just “be.” Once I learned to slow down and enjoy my mother—to see my time with her as a pleasure and not just duty—I was able to be her partner, to appreciate all the ways she was still a lovely person to be around despite the dementia and our challenging history as mother and daughter.
Still “Here” with Dementia: Giving as Well as Receiving
The authors of “I Care” write that “when someone helps care for someone else, we call him or her a caregiver. This is a natural title and one we all understand; however…this title implies that there is nothing left for the person with dementia to contribute.”
Too often we assume as caregivers that a person with dementia is “gone” or incompetent. A person living with dementia is still “here,” still capable of experiencing a full range of emotions, needs, likes and dislikes. They can usually continue to make some decisions in the early stages of dementia, and then, through the final stages of dementia, share love and affection, even if it’s just holding hands or offering a hug or a smile. I found that my mother and I could communicate with each other and share our love for each other without words—through our facial expressions, body language, gesture, and touch. If I paid attention, I could see that Mom gave me many gifts during the years of our care partnership, such as unconditional love, peacefulness, and appreciation for simple pleasures.
Supporting the Person’s Abilities and Interests
Learning to approach dementia caregiving as a care partnership also means encouraging the person with dementia to make as many decisions for themselves as they can, to express their own goals, and to continue to do the things they enjoy most.
I know from experience how tempting it can be, when a loved one is first diagnosed with early-stage dementia, to try to take control of all aspects of their life, as if they are a small child. Care partners learn, over time, how to support their loved one as a whole human being, not as a dementia “patient.” Care partners also learn—and this is no small thing—to pay attention to their own needs, to care for themselves. The one-sided nature of care “giving” can encourage people to become martyrs and do too much, while care partnerships encourage people to balance their partners’ needs with their own.
Care Partner Stories, Tips for Communication, and More
“I Care” includes many well-written stories by people who see themselves as care partners. These anecdotes are some of the best parts of the book. One husband of a woman with Alzheimer’s, for example, writes that “dementia has not robbed” his wife “of her personality, and it has not robbed us of each other. We have simply become partners.” His explanation of how they became care partners is quite moving.
Elsewhere in the book Brush and Mills share excellent tips about how to communicate with a person with dementia, find meaningful activities, and encourage socialization. One of my favorite parts is a sample letter in which a care partner writes to her husband’s friends, reassuring them that they are still a vital part of her and her husband’s life, and encouraging them to continue to visit.
Much of the dementia care information in “I Care,” such as tips for making your home safer for a person with dementia, can be found in other guides, but the authors bring a certain hopefulness and lightness of spirit, and specific clinical observations of care partnerships, that make their book unique.
If you have been diagnosed with dementia, care for a person with dementia, or work with people with dementia, “I Care” is one of the best descriptions you will find of care partnerships, and essential reading.
Learn more about “I Care: A Handbook for Care Partners of People with Dementia” here.
Learn more about the authors of “I Care”:
Have you heard of the term “care partner”? Does it sound possible to you to become a care partner rather than a caregiver? Have you discovered ways in which the person you care for has been able to care for you in return?