I have two wise and wonderful cousins. One is a doctor. When I was speaking to her recently lamenting my failure to advocate more vigorously when my father was being transferred from one facility to another, and expressing my belief his condition might have improved had I done so, she calmly reminded me of the major medical event that caused him to need care in the first place.
I was lucky to have someone who could coolly and rationally steer me away from the guilt many of us feel as we navigate the choices we face when assisting our elderly parents. We should all have a cousin Lizzy in our lives! But my feelings of guilt were not uncommon.
In my last column, I invited people to respond or participate in a discussion about the issues we face when caregiving. I actually received a few communications from others. These were primarily focused on the emotions we experience. Of course there is sadness and often anger about the circumstances, but while doing our best we may experience a range of feelings, including guilt, for not doing more.
We may rationally decide to sign certain orders that may limit care and shorten life, but the signing itself is traumatic. I have found it extremely helpful to talk to others about their experiences and learn mine are more common than I had thought.
There are circumstances we face as we assume the care of a parent that can be, frankly, awful, and in which we may question whether we did the right thing because the choices are not happy ones. Often I tell clients who are deciding whether to accept a plea offer, “This is not a choice between something good and something bad, this is a choice between something bad and something worse.”
Dealing with elder are decisions is often similar – a choice between something bad and something worse, and often just something bad and something else bad. It may be difficult to get adequate advice from the medical providers, some of whom may only have a brief contact with your loved one.
Pressing a parent to discuss the decline you are observing and they are hoping to ignore, choosing whether to try care at home – more dangerous and costly but perhaps more comfortable for the parent, selecting a level of care, selecting a facility, deciding about whether to sign “do not resuscitate” and “do not intubate” orders, declining IVs in final stages, considering a feeding tube if appropriate or an order not to hospitalize are all the kinds of issues that pit you, as a loving child with a perception that your parent is still the person you knew against the need to protect the vulnerable person you are coming to know. How do we make these decisions? How do we ensure we will be comfortable with the choices we made?
One step is to recognize the difficult circumstances we are facing, no matter how well we handle our usual challenges. It might be helpful to review some of the many websites that address these issues. Google “caregiver guilt” or “caregiver emotions” and hundreds of Web pages address the common emotions so many feel. One article, published on caregiver.org, provides a lengthy list of the gamut of feelings people experience. The link is here: https://caregiver.org/emotional-side-caregiving.
Local organizations provide assistance to individuals and families handling the care of elderly relatives. Two such local organizations are Lifespan at www.lifespan-roch.org and Eldersource at www.eldersource.org.
Another step is to educate ourselves about options. As lawyers, we often have an ability to quickly become experts in other fields. We have to employ those skills. Although there are many experts in this field, their motivation, often financial, may not lead them to provide you with the most accurate picture.
So as lawyers, we can employ that other tool we have – the B.S. detector. But when our guard is down, it’s often helpful to have someone – a friend, spouse or other relative – assist us in assessing if all is what is being represented. And we often must use our best skill – our ability to advocate. Document the problems, address them and, when necessary, take them to top administrators. Don’t be afraid to contact a director’s (or even CEO’s) office.
And there will be mistakes. Perhaps you miscalculated your loved one’s medical or mental status. Perhaps services you thought were available were misrepresented to you. At those times it is extremely important to be kind to and forgive yourself.
The chair of the GRAWA Women’s Health Committee, Kim Duguay, L.M.S.W., and attorney, (also a former president of GRAWA), and Adrienne Daniels, manager of Bereavement Services at Lifetime Care, are creating an event addressing the need to take care of ourselves during the times that we are coping with the loss or profound change in a loved one through death or illness. I’d like to encourage those interested in participating to join us once the details are finalized.
Jill Paperno is the 33rd president of GRAWA. She is first assistant public defender at the Monroe County Public Defender’s Office, where she has practiced for over 28 years.