CARE MANAGER'S CORNER - Author : Eileen Dunn, MS, CMC, CLTC, Geriatric Care Manager
I received a call from a daughter who lives in Colorado and was home visiting her parents. The parents are in their late 70s and the mother has Parkinson’s disease. There are three other children; two live within three hours of the parents, but work full time and have children in high school.
The daughter was concerned her father was exhausted from being the primary caregiver and just didn’t recognize it. Her mother also had dementia secondary to the Parkinson’s, with associated Sundowner Syndrome. “Sundowner” is a change in behavior late in the afternoon and into the evening and night. Fading light seems to be the trigger, and it gets worse as the night goes on, and gets better by morning. Patients often become agitated, restless, disoriented and demanding. It can be very difficult to manage at home depending on the severity. It is very taxing on the primary caregiver. The person with Sundowner syndrome will often sleep late and take a nap in the afternoon. The primary caregiver doesn’t have that luxury. The primary caregiver needs to take care of the household and everyday responsibilities, as well as the tasks the care recipient can no longer do. It is exhausting and can take a significant toll on the health of the primary caregiver.
The daughter finally got him to agree to consider having an aide come for a night shift so that he could sleep. We promised him it would be on a trial basis for two weeks, and that he could discontinue it if he felt it wasn’t helping. All too often, the primary caregiver becomes sleep deprived and it affects their mood as well as their decision-making ability. Think about it, sleep deprivation has been used as a form of torture throughout history. No matter how many times we discuss it, it seems people still dismiss the extreme effect drowsiness or sleep deprivation can have on one’s health, mind and cognitive actions.
The cost was $20 per hour and the shift was 10 hours long, from 9pm-7am. When the father learned it would cost $2,800 for this little “trial basis”, he almost refused to do it. Money was not an issue for this family. He had a very successful career as the head attorney for a very large company. He simply didn’t want to spend it.
After the two-week trial, with night time care, he decided to increase the care to include another aide for some daytime hours. He admitted he had considered getting help, but thought it was too expensive, and he could just do it himself. It wasn’t until he started getting some rest that he realized just how exhausted and sleep deprived he had been. He now has caregivers for 14 hours per day; the 10-hour night shift and a 4-hour day shift that allows him to run errands and go to lunch with his brother. He still doesn’t like paying the $7,800 per month out of his own money, but realizes it is just what he needs to do if he wants to keep his wife home. I guarantee if he had long-term care insurance he would have gotten the care before it started affecting his health.
Your clients need to know that long-term care has nothing to do with them. If they need care they will get it, but at what expense to those trying to provide it to them?
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