Sunday, September 30, 2012

Lessons Learned About Dementia

If you've been one of my regular readers, you've met Susan and Peter, a typical couple facing dementia. Susan and Peter's situation is representative of a number of couples I’ve encountered in my research. Their story expresses that of millions of caregivers and care receivers in America.

The learning curve is steep when we commit to caring for people with dementia. Knowing that dementia is a terminal disease can be daunting, especially as it confronts older care partners. What will become of our loved ones if we die first? How will we manage our own final years as we rapidly exhaust our financial resources? Will our children and grandchildren drift away after years of being attentive and devoted?  How can we handle the situation if our care partner loses his power of speech, can no longer feed himself and requires a feeding tube?  How can we manage after years of pouring out our love and energy only to find that the brain disease has wiped all memory of our care from the afflicted loved one.

The Sandwich Generation face a different set of issues than elderly couples. The Parent Trap means they are caught caring for their elderly parents while still in the process of raising children and holding a full-time job. We’ve all heard about parents in their 80s, who absolutely refuse to move into an apartment/condo or smaller home and are always calling on their adult children for help in the vegetable garden, to tackle the mountain of housework, or worse, cleaning the garage or basement where a lifetime of clutter has collected. Some boomers complain they feel like parents to their children.

This or other calamitous situations with older parents will undoubtedly arise. Roll up your sleeves, because at this stage of life you may have to put your folks at the top of the list.  Better medical care is likely to keep your loved ones living longer.  Be prepared for the fact that people who live past 85 die slowly and expensively, typically spending an average of two years needing full-time custodial care: feeding, dressing and toileting—and don’t expect  Medicare to pick up the bill.

Jane Gross, a New York Times reporter spent several years looking at the relationship between aging parents and their grown sons and daughters. Gross writes in her engrossing memoir, A Bittersweet Season: Caring for Our Aging Parents—And Ourselves, how she found herself totally unprepared for her own independent mother’s rapid descent into utter reliance on her two adult children. Gross offers a number of significant tips.

Face the fact that your time with your parent is limited and make the most of it.  This involves maximizing positive shared experiences and healing unresolved wounds. Keep in mind that older people are more than five times as worried about being a burden on their children as they are about dying. Making your parents as comfortable and content as possible contributes to their ease, and allows you to feel good about their last years after they’ve gone.

Under ideal circumstances, caregivers can pull the necessary resources together to care for their dementia person at home until the end of life. But conditions are rarely ideal.  The primary caregivers may have too many responsibilities—young children at home, a demanding job, other relatives that need care. Or the caregiver is too old or too sick to carry the burden to the end of the journey.

Sometimes, the potential caregiver—the person that appears most appropriate for the task—lacks the willingness or capacity to carry the load. These and other circumstances require that long-term care take place outside the home in assisted living, group home or skilled nursing facility. 

Moving an ailing parent or spouse to a good skilled nursing home can be an act of kindness, not neglect, says Gross. A good nursing home offers not only physical support to the parent, but also emotional and practical support for the child. Try a non-profit facility.

Consult an elder lawyer, geriatric physician or Area Agency on Aging staff member, who can best determine a suitable placement that fits the family’s pocketbook and the health and safety needs of your loved with dementia.
Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life. Buy now on Kindle or Paperback.

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