I spend an inordinate amount of time thinking about long-term care and worrying over who will take care of J if (or when) something happens to me. This is a complex and troubling problem exacerbated by: our age difference — I’m 11 years older and approaching retirement age; having an 11-year-old who has 10 years to go before graduating college (hopeful father!); having a limited number of immediate family members many of whom are already dealing with age-related problems; and a strong desire to keep J out of a traditional nursing facility.
The key question is whether J will regain any level of self-sufficiency with respect to activities of daily living (ADLs) and what will that look like. The answer is … nobody knows, but I suspect the most prudent thing to do is plan for the worst case where she is in need of full-time support for all activities. Putting aside the obvious financial challenges of this scenario, I worry about how J will receive that support in a way that maintains a reasonable lifestyle and allows her to continue her parental duties with our daughter. Remember, J is young (51) and could live a long life — her grandmother is thriving at 100 years old. Additionally, she doesn’t have any pressing medical conditions that might shorten her lifespan. She deserves to be able to live a fulfilling, love-filled life once I’m unable to care for her. To complicate matters even more, I haven’t even considered the scenario of what we will do if I become disabled and we both require long term care.
One Strategy of Many
Our current strategy is that my sister who is 7 years younger will take over the caregiving role for both J and our daughter. She lives nearby, is unmarried with no kids of her own, and very familiar with the daily requirements of running this family as she is my regular backup. She does have a full-time job that requires some travel so she would need a daytime aide and occasional full time support to help with J unless she is willing to stop working. While this is a sound plan, it’s a huge imposition. I’ve considered other family members or close friends, but none are easily able to assume J’s care. J’s older sister is already caring for their mom, J’s father is approaching 80, and J’s closest friends are dealing with their own life complexities. While I’m certain people (including friends in town) will step up to help if the need arises, there isn’t an obvious long-term care solution.
It all comes down to money. I have friends who are financially secure and caring for an elderly parent, and able to afford one or more full-time caregivers, housekeepers, chefs, drivers, etc. We don’t fall into that category by a long shot — if we manage our investments carefully, we should be able to put our daughter through college and provide a reasonable financial cushion for us (or just J) as we age, but full-time help is expensive and would drain our resources in a matter of years.
There Needs to Be a Better Way
Over the past decade, I’ve joked with family and friends about the need for building a “compound” where we can all live and care for each other as we age. The truth is that this is a reasonable idea, and something that we as a country should consider encouraging and supporting as more and more baby boomers approach retirement age. For example, J’s grandmother recently moved into a home which is basically someone’s house where a few senior citizens live, receive meals, medical assistance, and companionship.
This a compelling model, far more affordable than traditional long-term care assisted living or nursing facilities, but one not easily found in the US. Oh, and I should mention that most social workers and attorneys I’ve discussed all this with have already suggested that I separate and “spend down” J’s assets to qualify her for Medicaid — alleviating most of the financial burden of placing her in a facility. I’ve resisted this and will continue to until I exhaust all other options. Interestingly back in 2010, Joe Shapiro from NPR wrote about the increasing population of younger people in nursing homes, so at least, I know I’m not alone in trying to figure this all out.
As is the case with most of my posts, this one is not an exhaustive study of this topic and doesn’t even offer any advice. Our journey towards a solution will take time, and all the while the clock is running, and my sense of urgency is growing. What challenges do you face and what solutions have you found?