“Be Prepared” is my mantra for those who are aging with frail loved ones. I also say, however, that each person becomes frail uniquely, so to know what to be prepared FOR is the challenge. One important and doable item that covers most frailties is taking physical safety measures in the household and on the property. At least that is a place to start when not knowing what kind of care needs will present themselves. Then, when the care needs do actually present, you at least have the bases covered.
Last week I availed myself of an Aging Life Care Specialist. In 1981, I started my career in care at home as one of these professionals, and was instrumental in growing that segment of the care at home industry nationally. However, finding myself in a personal situation where the care demands exceeded my capacity to deliver, I turned to the one source that I always recommend: I went online to aginglifecare.org and searched for professionals in my area. I vetted some and ended up with an established 20+ year old firm that is owned by a social worker and has a physical therapist, nurse, and PA on staff as well, serving as care managers. They wisely chose the PT professional for us, and, I was impressed with her interviewing skills, her thoroughness, and her recognition that any of my “butting in” to the patient’s plan to return-to-normal-goal was not appreciated.
For many years, I counseled and consoled wives who were overburdened with caregiving responsibilities. You see, for some reason, men have a harder time accepting a) that there is anything wrong with them and b) that a spouse might actually know anything about how to help them. I remember saying, “What you need is some respite.” And now I laugh at that, because there is no respite when the caregiving situation is 24/7. Yes, you can get out of the house and go to the grocery or for a walk in the woods, but the weight of it never leaves. The burden of caregiving responsibility for another who does not take his own medical information/prescriptions as important is a heavy burden. The Aging Life Care Specialist can take over the monitoring of the care, assume the responsibility of working with the patient, and leave the spouse out of it. Now, THAT is respite.
This is really hard to admit, but on a walk this past week, my older son, being observant of the situation his mother found herself in, said, “You know XXX did such a good job of planning for eventualities. She moved into a reasonable space that had extended care options for later needs.” And, I realized that I was guilty of what I preach against. Thus the call to the Aging Life Care Specialist. Now, we want to stay in our home as long as possible, and I am thinking that is until we leave this earth. And, I had done a lot of planning in redesigning the house for aging and frailty. The kinds of frailty we encounter, however, are always a surprise. Lack of balance is a tough one as one needs balance to do most anything, and losing one’s balance means falls. And falls, well, we all know what that leads to.
Another one of my regular statements is that our healthcare delivery system is broken. There are just SO many parts that do not function well, and mostly because it is driven by reimbursement. You get paid for what you do. And there had been no limit. Add an aging society with huge percentages of our population starting to need more care, and the system becomes untenable. There is a current popular movement afoot to go to capitated services measured by outcomes. That might help. You get paid x number of dollars, and getting more is based on your ability to perform and help keep people healthy and out of the hospital. There is also a movement to rely more on home and community based services as they really are, in most instances, the lower cost alternative. And, most people would prefer to be at home if they can do so safely and comfortably.
So, I find myself at a point in my personal life that is intersecting with my professional life, and am excited to see if we really can handle the situation and come out on the other side with some dignity and better mobility and balance.