Don't let palliative care decisions tear your family apart
Every worker in senior health has a million reasons why families should carefully put together their best care team for aging parents. But sometimes it's more instructive to hear the cautionary examples of the families who didn't.
My heart breaks every time I remember the estranged daughter, absent for years and living 2,000 miles away, who showed up unannounced at her mother's deathbed and informed the rest of the family that she, and only she, knew the final medical directives.
Then there was the family that threatened a bitter lawsuit after one side argued that their father with dementia should forgo a move into a memory-care facility - not because that was the best medical solution, but because it would siphon away too much of their expected inheritance.
And my ears are still ringing from the uncle who was included on a care team because of his advanced computer skills, but then used his overbearing personality - and unrelentingly loud voice - to bully the rest of the family about medical plans.
None of these families expected or wanted to spend the last chapter of a loved one's life embroiled in emotional disputes. Unfortunately, it's an all-too-common result for families lacking a solid care plan.
With Medicare open enrollment starting on Oct. 15, families across America are picking their way once again through an avalanche of TV ads, brochures and emails encouraging them to choose one health plan over another. As the son of seniors, I know how frustrating this process can be.
Read: Why doesn't America's healthcare system work for older people?
But as a nurse and chief executive of senior-health company, I also know there is one thing you can do to make the Medicare planning process - and all the senior years - much better for you and your loved ones.
You need to plan out your senior-care team.
Many families benefit from tapping the expertise of a geriatric-care manager. These are licensed professionals, often nurses, social workers or physical therapists, with the training and experience to help guide families through some of the hardest decisions they ever will face. Most work for $50 to $200 per hour, an out-of-pocket cost that unfortunately isn't covered by Medicare.
Read: Medicare open-enrollment will be a doozy this year. Here's how to make smart choices.
Unlike many families, a geriatric-care manager has seen most caregiving situations before, and can provide a measured voice of reason during stressful times. The manager is the family advocate when negotiating the medical bureaucracy, hospitals, insurers, assisted living and healthcare providers.
A good manager may even help family members negotiate with each other.
It's no secret that the end of life can push all the old, simmering family personal grudges to the forefront. Just because one family member wants a specific responsibility - the medical liaison to accompany parents to the doctor, or financial manager, or communications coordinator, or transportation person - doesn't mean that they are the right person for the job.
A geriatric-care manager, coming from outside the family, may be able to navigate between siblings better than the siblings themselves. So often the burden of caregiving falls mainly on one particular family member; a care manager will have the outside perspective to tell when that family member needs a break.
The one guiding principle to caregiving is: What are the wishes of the person being cared for? It's best to have instructions written down - the clearer the direction, the better. Some seniors want to preserve life at any cost. Others focus more on dignity, independence and avoiding pain. Many seniors opt for do-not-resuscitate orders, but it's crucial to spell out what that means to the individual. CPR? Feeding tubes? Ventilators?
With so many choices, a key member of the team should be a lawyer experienced with wills and medical directives. A financial planner will help navigate costs and cash flow. A priest, minister, rabbi or other religious leader can advise on spiritual and emotional issues.
It's important to remember that life is about fun and joy, too. For some seniors, that means a bucket list. Others may want personal time for crafts or hobbies or movies or sports. Many put a premium on seeing grandchildren. Truly living can and should be a focus for every caregiving team.
Though this column began with cautionary examples, I also want to affirm that there are many wonderful cases of formerly broken families brought together to celebrate and commemorate the sunset of a magnificent life.
We rarely know exactly how and when we will die, but we can always make a plan to fill our remaining days with as much love and fulfillment as possible.
Joel Theisen, BSN, RN, is founder and chief executive of Lifespark, a Minnesota-based senior-health company. Follow him on Twitter.
-Joel Theisen
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