LBD Caregiver vs. Advocate, Which are You?

Imagine, you are in a plane at 10,000 feet riding comfortably, without a care. Then, the pilot dons a parachute and jumps out. Now, what do you do? Believe it or not, this is what it is like watching my mother, Linda, ride the wave of LBD. She hasn’t changed much: She laughs at jokes. She loves being with people. And, she is called “delightful” by her caregivers. She just doesn’t burden herself with the “past or the future,” only the present. In a way, I believe from her perspective, it is freeing though it can make her anxious. That is where I come in. The burden and loss is ours, because we carry the trifecta of past, present and future on our shoulders.

Linda’s family and her caregivers now prod her thoughts into action. We become her “pilot” during simple tasks like; taking the next step on the stairs, using the fork to feed herself, or helping her wait until you can get the sleeve ”in the right place” before she thrusts her arm into it. She is always grateful, but this status, eventually, becomes all day every day. It is an incredibly huge burden for the family caregiver. And, then there is the accompanying guilt.

I am the daughter of an RN that worked 40 years in elderly care. We know, personally, the decline of today’s health care system and its negative impact on dementia patients. Don’t fret, great services are there. They are just buried under layers of ‘red tape.’ My mother and I have walked in lock step toward “Dignity” during this process. We have been “Managing” the treacherous waters of home care and finding appropriate services. After a recent hospitalization-allowable under a “behavioral change”- we discovered she thrives under 24 hour care, so this hospitalization will end with her reaching her chosen nursing home. This is not the end; this is the beginning of the next level of managing LBD. As always, we will make it a good experience for her.

To all my fellow caregivers, you are not alone. Nearly 60% of my peers are facing similar parental dilemmas. Don’t make yourself “God” by thinking you can do this alone. The worst lesson I have learned is that a friend’s father insisted, against his children’s wishes, to keep his wife with Alzheimer’s at home to care for her. He took on 100% of the burden until he became gravely ill. His wife was placed in a dementia care unit, which she found to be so much fun that she wanted him to join her. He couldn’t; he couldn’t recover from how sick he made himself from caring for her. He died a few weeks later. Why? His wife is enjoying her new life in a place crafted to meet her needs. And now, his family has lost a wonderful father and grandfather. To better comprehend where our LBD person’s care begins and ends and our responsibilities begin and end, go back to my first paragraph. That is where you and I are. There is no guilt in being the best advocate for our loved ones care, but you are not and cannot be them.

Karen C.

Jan 25, 2019