As we celebrate our 100th issue of Healthassist News, I find myself incredibly appreciative of all of you, my readers. That’s what I wrote in my “Gratitude Journal” this morning, part of my daily practice to help me reflect on my day, live in the moment, and manage the anxieties and fears that accompany an ongoing pandemic.
As I continue to look for silver linings during this challenging time, I find myself grateful for the pleasure of working with several clients who are not in crisis — but who are thinking ahead and planning.
All of these clients are caregivers, either for a parent, a spouse or a disabled child. Each has worked hard and done a wonderful job creating levels of support that meet the current needs of their loved one.
But now, they are experiencing anxiety as they ponder an important question: “What happens if something happens to me?” Today, I share examples of contingency plans we have developed to provide an answer.
Gary and Sarah
Three years ago, Gary and Sarah made a decision to have Gary’s 92-year-old father, Paul, live with them. They made some modifications to their home and created a space that was safe, but that also allowed everyone their privacy. Over time, Paul required physical help with activities of daily living and allowed Gary to assist, always saying that they would keep things between the two of them, permitting Paul to maintain his dignity.
Sarah provides additional assistance by cooking fabulous meals and, most important, socialization. They admire and respect one another and, for now, all is good.
When Gary called me, he wanted to discuss the following three scenarios
- What if something happens to dad and he comes down with a respiratory illness, presumably COVID-19? How do we honor his wishes to not go the hospital for treatment?
- What if something happens to me? How do I not place a burden on Sarah to care for my dad?
- What if something happens to both Sarah and me? Who takes care of dad?
Scenario #1 — What if something happens to dad?
For many families caring for older adults, a point comes when a decision is made to let nature take its course and to not intervene aggressively in the face of illness. Paul made this decision in the midst of the COVID-19 pandemic and communicated those wishes to Gary and Sarah.
Here’s what Gary and Sarah did to prepare for this possible scenario:
- They scheduled a telehealth call with Paul’s primary care physician, to be sure she knew of his wishes and that Gary and Sarah supported his decision.
- They agreed that in the event Paul became ill, his doctor would be notified immediately, and she would make a referral to Hospice.
- They agreed that they would care for Paul at home, along with the Hospice team.
- They identified a private homecare agency they could turn to if the need arose but, instead of waiting, they decided to hire some private, in-home help now, so that a relationship could develop and evolve with the agency.
Scenario #2 — What if something happens to Gary?
They decided that Sarah would continue to live with Paul, but she would not provide hands-on care.
Instead, they would ramp up the care provided by the private homecare agency, thus maintaining Paul’s privacy and dignity, and relieving Sarah of any greater burden.
Scenario #3 — What if something happens to Gary and Sarah?
In this scenario, they decided that while they would still like Paul to remain at home, there would need to be much more assistance — not only with hands-on care, but with life management overall.
Here’s what they did:
- They discussed this possibility with their son and asked if he were willing to take on the responsibilities necessary for supporting this goal for his grandfather. He agreed that he would manage the finances and the property and would recruit the help of Healthassist to manage Paul’s healthcare, oversee the care in the home, and act as his eyes and ears to identify issues as they arose.
- They created a “communication book” that outlined the essentials involved in Paul’s care, along with his personal preferences on a range of topics. This included Paul’s daily routine (timing of meals, favorite foods, favorite music, sporting events, etc.); specific activities for which he needs assistance, including details of how he accepts help; medical conditions he manages and a complete list of his medications, including the time at which he takes them.
- They began to explore alternative living arrangements for Paul in an assisted living and/or long-term care environment, recognizing that even back-up plans may need a back-up.
Other contingency plans
Of course, Paul and Sarah are not the only clients with whom we have had similar consultations. Other examples of family discussions and back-up plans created include:
- A mom and dad who began conversations with their adult children to plan for the care of a sibling with developmental disabilities, for when the time comes that the parents are no longer able to provide this care.
- A daughter who finally agreed to call a family meeting with her siblings to ask for help, after having cared for her mom for years, and who until recently, had little desire for assistance from others.
- A husband who began conversations with his adult children about their mom, who had a neurological condition that required 24/7 care at home, so they could all participate in the planning together.
The silver lining of this pandemic and the fears associated with it are the opportunities created for families to think ahead — families that under “normal” circumstances would usually wait for a crisis to occur before considering options.
Clearly, these are difficult conversations. However, as Paul and Sarah confided to me recently, there is a great deal of relief in laying out possible scenarios and developing back-up plans. In most cases, the worst option is doing nothing.