special contribution by Susy Elder Murphy, BA, CMC
owner, Debra Levy Eldercare Associates
One of the most difficult decisions that any family faces is making the decision about when, or if, moving a family member to assisted living is the right thing to do. As Aging Life Care™ Managers, this is often when we are called on, whether to schedule an office consult with concerned adult children to discuss options or to meet with a spouse in their home and assess whether or not their husband or wife can still be safely cared for there. It is nearly always an emotionally fraught decision. Sometimes adult children promised their parents that they would “never put them in a home,” whatever that may mean in today’s world where some skilled nursing facilities actually more closely resemble a Hilton Garden Inn with nurses, and long before being faced with the realities of a difficult diagnosis, such as Lewy Body Dementia. When I meet with couples who may have been married for 60 years or more, they are often wracked with guilt because they feel that they have in some way not fulfilled their wedding vows to care for their spouse “in sickness and in health,” promises made decades before the diagnosis of a chronic and progressive illness such as Parkinson’s Disease has begun to take its toll on the strongest of marital bonds.
I give talks on this subject at assisted living communities in our area and they are always well-attended by adult children and spouses who have the same questions for me: What are the options and how can we afford to pay for this care? More of us have long term care insurance which may cover most or even all of the cost of care, but many families are dipping into hard-earned savings, or looking to government benefits to help cover the costs. I recently met with a brother and sister who live in this area and were concerned about their parents who live in Florida. They began trying to look at different communities on their own and quickly realized that they needed the guidance of an Aging Life Care Manager to help them understand the alphabet soup of categories of care that their aging parents might need. As members of the Aging Life Care Association (ALCA), we do not have a financial relationship with any community or resource that we refer our clients to, and our recommendations are based on our clients’ needs and our experience in the geographic area we serve.
To use the “Smith” family as an example, mom is age 85 and takes a few medications for chronic conditions such as hypertension and thyroid imbalance, but has had noticeable memory loss for the last several years. Dad, 89, also has some memory issues, but has also recently been diagnosed with congestive heart failure, including a hospitalization to treat that condition. Mom and Dad are both happy in Florida and have some extended family there, as well as many friends and activities they enjoy, although both of their adult children live here. “Don” and “Amy” wanted to know if they should continue to travel back and forth to Florida to deal with intermittent health crises such as their dad’s recent hospitalization, or, whether it would be better to bring their parents closer to them here.
We began with a discussion of finances. The Smiths have modest income of about $3500 per month, and are not eligible for the Aid & Attendance benefit through the VA, since neither parent served in the military. They have savings of about $50,000 and a condo worth about $100,000, which is fully paid off. They currently live within their means and cover their out of pocket medical expenses and living expenses out of their monthly income, usually with some left over at the end of the month. My first suggestion was that they get a more comprehensive assessment of their parents’ medical condition, particularly their dad’s congestive heart failure and their mom’s memory impairment. They plan to have a comprehensive assessment by a geriatrician of both of their parents, and I was able to refer them to an ALCA member in Florida who could assess how they are actually functioning at home. My colleague in Florida could assess if their memory issues are causing them to forget to take medication, compounding their other medical issues, and also identify what local resources they could tap into to support their continued care in their familiar home as an option that might be sustainable for another year or two.
At the same time, we explored different housing options in this area. I suggested that they look at communities that offer independent living (a private apartment with a full kitchen and a congregate dining meal plan of 1 -3 meals daily and weekly housekeeping) with the possibility of a subsidy, as well as the availability of ala carte services such as medication management, and assistance with bathing, as a way to stretch their savings out for as long as possible. Some of these communities also offer assisted living options (a private apartment but with only a kitchenette and 3 meals and snacks daily, as well as weekly housekeeping and laundry) with more comprehensive nursing oversight, as well as possible subsidies. In the event that one of them needs skilled nursing care, possibly Mr. Smith due to his advanced age and congestive heart failure diagnosis, I explained how Medicaid would come into play to pay for most of his care, and referred them to an elder law attorney who specializes in Medicaid for additional guidance. In the event that Mr. Smith predeceases Mrs. Smith, we also explored the possibility of a small group home to meet her care needs, due to her memory deficits and the strong possibility that she might have early to mid-stage dementia. Group homes offer private bedrooms, shared meals in a communal dining room and a less institutional setting than a skilled nursing facility, for about half the cost.
At the end of our 90 minute meeting, Don and Amy had a short list of communities near their homes in the metro DC area that could meet their parents’ medical and financial needs, as well as a referral to the Aging Life Care Manager in Florida to help them understand what options are available to their parents there, as well as to get a more complete assessment of their needs. We will remain in touch as they explore the options and, as a family, make the decision about when it is time to move their parents.
Susy Elder Murphy is the owner of Debra Levy Eldercare Associates, an independently owned and operated Aging Life Care Management practice founded in 1988. She is also President of the Mid-Atlantic Chapter of the Aging Life Care Association. She can be reached at firstname.lastname@example.org