Can a Caregiver get some Respect? Please?

Like all elder law and estate planning attorneys, I met daily with seniors who were adjusting to the needs of aging by authorizing a child to act for them. The legal role may have been of an agent under a power of attorney or a co-trustee of their revocable living trust. This an almost routine but necessary need, especially for our aging clients when life can change by just one fall in the home.

However on many occasions I have met with an elder client who needed more than an executive assistant. This client would have daily needs for assistance because of medical issues and or mild cognitive decline. Often the need was met by one child who would take care of every need from waking in the morning to going to bed in the evening and then there would be calls for assistance during the overnight hours. These cases did not involve “elder abuse” but perhaps a situation we might call “caregiver abuse.”

Often the elder could not hear well enough to handle business on the phone and could not see well enough to read small print. The caregiver became the communications manager, the appointments and calendar keeper, the accounts manager, the medical appointments coordinator and health insurance wrangler. In addition to the business side the caregiver was the co-shopper, the meal planner and the personal assistant for daily matters such as hygiene, laundry, cleaning and making sure everything was ready for the elder’s day. The child could perform these roles because s/he was not employed and often lived in the house with their parent.

In these situations there were siblings who were quite comfortable with their own homes and family and often doing well in their employment. They often helped once a week taking mom or dad out to dinner. In contrast the caregiver was typically in her or his 50’s with no career and uncertain prospects about their own future after the parent had passed on. If the caregiver child was older, then the 24 hour on-call strain began to have deleterious health effects.

The parent often understood the caregiver’s anxiety about the future and was very grateful for the full time support that allowed the parent to live in his/her own home. It is no surprise that the parent often wanted to give the caregiver the home or other funds such as the savings account, on which the caregiver was often a joint owner. It is at this point when sibling conflict begins. If the other children learned of the special gift for the caregiver they were often outraged exclaiming such as “I would NEVER take a DIME of my mother’s money!”

I will stop the narrative here and observe that the foregoing is “the story.” It is not how such a client meeting is conducted or how the legal situation may be addressed. I will, however, observe that the client’s needs are not met by strict adherence to determinations of capacity and strict client confidentiality. The client comes to the elder law attorney with a difficult family problem and seeks to find a solution. The attorney does no service to the client if the avoiding potential litigation between siblings is not part of the solution.

A second key observation is that the caregiver is performing a very valuable and otherwise very expensive role. The average cost of in home care for a senior is 30 dollars per hour. If a senior can no longer live in the home, a move to “assisted living” may be the only option with costs approaching $6,000 per month. The services included in the typical assisted living community do not involve personal finance or medical management issues. That is extra time and effort spent advocating on medical and insurance issues such as treatments that need “prior authorization” or are not approved for payment. (That is another post in itself.)

It is clear that a 24 hour caregiver and all around “executive assistant” is performing a vital role for the client/parent and a very valuable role in terms of financial value. How that may be recognized in particular situations can be a very difficult question. The standard advice “plan ahead, not in response” applies especially here.