Severe anxiety issues complicated my wife's Alzheimer's disease (AD) in the late fall of 2015, eventually leading to my hiring 24/7 personal daily aides (PDAs) in order for Clare to remain in the dementia unit of her assisted living facility. When Clare's disruptive behaviors continued to escalate, despite the constant presence of her PDA, she was discharged to a psychiatric hospital where she remained for three weeks while undergoing various changes in her daily meds. When Clare was discharged from the hospital she was no longer demonstrating severe anxiety or disruptive behaviors, but she was still having periods of sadness and weepiness, and she was very confused most of the time. The assisted living social worker and dementia unit director requested that I again provide a PDA for Clare, this time for 12 hours daily, to facilitate her transition back to their facility.
According to the latest Genworth study, PDAs "offer services to people who need more extensive care. It is 'hands-on' personal care, but not medical care." The study notes that the median national cost for a PDA is $20 per hour. I am now paying $22/hour for the first 40 hours, then $33/hour for each hour after that ("overtime" rate), and an additional $10/hour on holidays (holiday premium).
Concerned that Clare might need 12-hour PDAs indefinitely at a cost approaching $2000 per week, I started to check out nursing homes. PDA costs are not covered by our long term health care insurance, but monthly costs for nursing homes, also known as skilled nursing facilities, are covered. I thought that this might be the time to move Clare to a nursing home where, I assumed, the higher level of care would eliminate the need for me to pay extra for PDAs.
I also thought that if Clare's anxiety issues should resurface, a nursing home's medical environment with nurses and doctors onsite might be more appropriate for her than the social environment of an assisted living facility. Some nursing homes even have a psychiatrist onsite who can readily observe patients and make changes in medication when necessary.
However, I quickly learned that there are vast differences in nursing homes for people with AD. For example, I learned that many nursing homes will not admit an AD patient who is ambulatory. Whereas all the nursing homes I checked accepted AD patients, those without separate lockdown dementia units will not accept Clare because she still can walk by herself. These facilities feared that a mobile AD patient might wander and, conceivably, leave the facility unnoticed. They told me that they would not accept Clare until she was in a wheelchair.
I also discovered that many nursing homes will not accept an AD patient with anxiety issues ... unless I hire a PDA! I had assumed that all nursing homes were able to deal with AD patients regardless of their physical or emotional difficulties. But I was wrong.
Fortunately, I did find several nursing homes that will admit Clare as she is right now, despite the fact that she is still able to walk on her own without requiring a walker or wheelchair, and despite her occasional weepiness, the last vestige of her anxiety issues. During one of my tours at these facilities, all of whom had separate lockdown units for dementia patients, I asked the lead nurse if Clare's occasional periods of weepiness would be a problem. The nurse literally said to me, "Why would that be a problem? We have dementia patients with all sorts of problems." That was the response I had expected to receive in all of the nursing homes I checked out. But it wasn't.
Caregivers considering nursing home placements for their loved ones should also be aware that there is a great difference in how AD patients spend their time in nursing homes as compared to assisted living facilities. Clare currently participates in five to six hours of daily activities and programs, and goes on the facility bus several times each month with other residents to enjoy scenic drives as well as outings to parks, beaches, and restaurants. Clare also enjoys the overall facility entertainment often made available to AD residents, plus a movie theater room complete with a popcorn machine, and many other opportunities for cognitive engagement and just pure enjoyment. In contrast, none of the nursing homes I visited had more than two to three hours of daily activities for AD patients, and none had dedicated movie theatre rooms or provided outings.
AD patients in nursing homes seem to be spending most of their time just staring into space, sitting in front of a TV set, or sitting in a room napping alongside other dementia patients. I also learned that many nursing homes in my area were already at "full capacity," so Clare may need to be placed on a "wait list" whenever I make the decision to move her.
Fortunately, Clare is doing well now with a PDA for "only" eight hours a day, so I am not moving Clare to a nursing home at this time. But I strongly advise AD caregivers to learn from my experience. Nursing home decisions should not be left for the last minute. Before your loved one declines to the point where a nursing home placement may be needed, check out and visit facilities in your area to learn about their admission policies ... and prepare accordingly.
If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in 2 weeks. Tentative title ... "Alzheimer's Care at Home?