I was privileged to have dinner this weekend with a woman who is taking care of her husband of 59 years. He has Lewy body dementia, a very common but less well-known type of dementia. It is second only to Alzheimer’s and is associated with Parkinson’s disease. She has brought in a caregiver in the afternoons and recently added a caregiver at night so she can sleep. She is still quite busy with his needs. An educated guess would put her at close to 80 years but she looks to be in her mid-60’s. She’s gorgeous and full of life and humor.

She told me that recently one of her sons approached her and let her know that he and his brothers had agreed they would support her if she felt it was time to put Dad in a home. She thanked him as she appreciated the support. Her son immediately asked her when she planned to go through with moving Dad. “I’m not going to do that,” she said. The son was disappointed and demanded to know why not. “Because I have taken care of him for 59 years and I’m not about to stop now.”

It can be difficult for those who have not been a primary caregiver to understand why a caregiver is reluctant to turn over the role of caregiving to other people or a facility. To many people, it appears that the caregiver is playing the part of the martyr. As a former primary caregiver I do take offense at that suggestion. Yes, caregiving is demanding and draining, in addition to being rewarding. But the caregiver is drawn to that role like an some athletes are drawn to an extreme sport. Why?

There is a strong bond that forms between the patient and the caregiver similar to that between a mother and her newborn. The patient knows that the caregiver can be relied upon in all circumstances, he comes to trust that the caregiver has his best interests at heart and will advocate for him. For the patient, who is vulnerable and dependent, having someone he can always count on is invaluable. The caregiver knows all of this and wants to fulfill the job. She will come to know him and his needs better than anybody else will. Just as a mother does not want to turn her newborn over to a facility, the caregiver does not want to relinquish her role in the patient’s life. Yes, there are caregivers who are martyrs. But I believe the majority of caregivers want the responsibility and want the relationship with the patient because it is a treasured, albeit challenging, experience. They hear the statistics that their health could be endangered by the demands of the job but they don’t worry about that. The sense of accomplishment from excelling in the role is worth the risk.

The woman I am writing about has sons who love her. They worry that the stress of taking care of her husband will cause her own health to decline and they don’t want to lose her, too. The time may come when she cannot care for him anymore and it is good that her boys will understand. But in the meantime she will give caregiving all she has because it is what she wants and who she is. The mountain climber climbs Mt. Everest because he wants to climb even at personal risk. The surfer searches the world for the biggest wave at personal risk. The caregiver is no different and should be respected for his or her perseverance, not labeled as a martyr.

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