Recently, when friend and “founder” Luise May visited our office, Shawn Hunt and I sat down to ask about her experience as a caregiver for her Alzheimer’s–affected husband over the past nine years. Our goal was to further understand the feelings and experiences of the people our firm strives to help–those serving as caregivers for loved ones with long-term care needs.
One of Luise’s strongest statements was the feeling that “you are trapped! Financially and socially, you are trapped.” As a caregiver, many choices are simply taken away from you. The only choice left is how you will respond in any given situation. Because of this, it is not unusual for many caregivers to experience burnout.
And it’s not only the absence of choices that make you feel trapped, according to Luise, but the lack of control over basic areas of your life. “You can’t control your schedule. You can’t control your loved one’s incontinence or sleeping times. You can’t control what they are going to say or what they are going to do. You lose all freedom.”
When we inquired into social activities, Luise told us “I used to try to take Bob with me to concerts, because we both love music. But eventually it got to the point where it was just too much effort and he didn’t enjoy it anymore.” We asked if she could invite friends over to her house, but, she said, “It’s just so difficult. What do you say to them? And what do they say to you? It’s extremely awkward. In addition, there are times when Bob became very angry, and because I’m doing the care-giving, I’m right there for Bob to express his frustration. I didn’t want other people to see that. Remember, you can’t control anything. You lose all your freedom.”
As we listened to Luise share her nine years’ experience caring for Bob at home, we could not help but admire once again all the caregivers out there. Her story served as yet another reminder of why we at Law ElderLaw do what we do: provide counsel and help to those who lovingly sacrifice their wealth, health, freedom, and careers to provide loving care for a spouse, child, or parent.