New York has some Assisted Living Residences (ALRs) that have "enhanced assisted living" certification, which allows people with dementia to "age in place" as their disease worsens and their need for care increases. Residents in ALRs with such certification do not need to be moved to nursing homes, hospitals, or hospice facilities unless they require constant medical supervision or their behavior presents a danger to self or others. One of the reasons why I chose Clare's ALR was because they had such enhanced certification. What I did not realize at the time I chose her facility, however, is that an ALR with enhanced certification does not necessarily provide "aging in place" care with its own staff.
As Clare's needs for care increased due to worsening anxiety and confusion in recent months, I had to agree to hire a PDA ... personal daily aide ... in order for her to remain at her ALR. I was told that her ALR did not have sufficient staffing to assist individual residents during meals or to redirect residents who lose focus during activities.
Hiring PDAs quickly became an expensive proposition. The agency used by Clare's ALR charges $22 per hour for the aide's first 40 hours per week, and then $33 per hour for "overtime" ... any hours the aide works beyond 40 hours per week. The rate also increases to $33 an hour whenever PDAs work on holidays. Clare's ALR wanted me to hire a PDA for 12 hours daily for a total of 84 hours per week, at a cost of nearly $2000 each week.
Refusing to pay that much to keep Clare at her ALR, I started checking out nursing homes. Ironically, even though nursing homes charge a lot more per month than ALRs, their costs are covered by our long term health care policies and they have sufficient staff to provide the care that I had been paying extra for at her ALR.
However, I wanted to keep Clare in her ALR for as long as she continued to enjoy the many daily activities and the pleasant social environment, so the ALR social worker and I agreed upon more limited daily hours of PDAs ... still expensive, but less costly than paying for 84 hours a week. This added expense for PDAs was not covered by our long term health care policies, but I decided it was an expense worth paying to keep Clare where she was. Her ALR had five to six hours of daily activities, as compared to only two or three daily hours of activities in any nursing home I checked.
When Clare started losing interest in her activities more and more, I knew that the time was coming quickly when I would move her into a nursing home. That switch from ALR to nursing home actually happened this past week when some health issues led to Clare being hospitalized. Hospital staff said she would need to be released to a nursing home for rehabilitation and physical therapy, so I withdrew her from the ALR and proceeded to make arrangements for her transfer directly to the nursing home I had chosen.
My experience has resulted in some words of caution to caregivers seeking ALR placements for loved ones. Should you also want to place your loved one in an ALR that allows "aging in place," find out who pays for that extra care that may become necessary for them to provide that aging in place! Does the ALR have sufficiently trained staff to provide aging in place, or are you responsible for hiring PDAs? If you must pay for PDAs, find out for how many hours you may need to hire such aides, find out that cost and, if you have long term health care insurance, find out if PDA costs are covered expenses. If you will be responsible for paying PDA costs directly, that may affect your choice of ALR, or may cause you to select a nursing home instead of an ALR when it comes time for any placement outside of the home.
Caregivers fortunate enough to have the money to pay out of pocket for required PDA expenses may decide, as I did initially, that this is a cost worth paying up to a point. If that additional cost will allow a loved one to continue enjoy participating in daily activities in an ALR social-like environment ... as opposed to a loved one having a very limited daily activity schedule in the hospital-like environment of a nursing home ... then all is well. But caregivers without the ability to pay for extra aide time should know the ALR policy in advance. Truthfully, it's possible that upon Clare's admission to her ALR I may have even received some heads-up information about the possible need to eventually hire private aides. If so, however, it was only a brief mention in passing.
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 ... "Choosing a Nursing Home for a Loved One with Alzheimer's."