Editor’s Note: This guest post was provided by Deborah S. Adler, Director of Member Relations, LeadingAge Maryland, a community of not-for-profit aging services organizations serving residents and clients through continuing care retirement communities, senior housing, assisted living, nursing homes and home and community based services.
Based on my personal experiences as a family caregiver, as well as my 16+ years working in the field of aging services, I have learned about the many challenges family caregivers face. Here are 10 challenges that come up repeatedly.
- Watching your loved one deteriorate
Nancy Reagan coined it perfectly when she described her husband’s journey with Alzheimer’s disease as the long, long goodbye. It is agonizing to see your loved one disintegrate before your eyes. It is devastating to realize that one day your loved one may not recognize you or even know who you are. On one of my many trips down to Florida to check on my father, he and I went out to dinner. I was driving and he was in the passenger seat. I noticed at a stoplight that Dad was looking at a little piece of paper he had pulled out of his front pocket. On the paper, it said my name. He did not know my name. I wonder if he even knew that I was his daughter. Can you imagine how frightened he was to be riding with someone he did not know?
- The caregiver’s own deterioration
While taking care of their loved ones, many family caregivers’ own health declines. According to the Maryland State Plan on Alzheimer’s Disease and Related Disorders (December 2012), more than 60% of caregivers surveyed rated the emotional stress of caregiving as high or very high and one third reported symptoms of depression. Due to the physical and emotional toll of caregiving on their own health, U.S. caregivers of individuals living with dementia had $8.7 billion in additional health care costs in 2011 (Ibid).
- Disintegration of finances
Caring for an individual living with dementia is very expensive. Kaiser Health News recently reported that family caregivers typically spend $7,000 a year on caring for a loved one at home (Study: Many Caregivers Spend $7K Annual Out of Pocket, cited 11/14/16 http://khn.org/news/study-many-caregivers-spend-7k-annually-out-of-pocket/). At the dementia care community where I worked, it cost between $7,000 to $12,000 per month for an individual to live in assisted living and over $12,000 per month for an individual to live in skilled nursing. Home care is no bargain either. The typical agency charges at least $20 per hour. That really stacks up when the individual needs care round the clock.
- Getting the doctors to write an incapacity statement
Many Power of Attorney (POA) documents go into effect only when two physicians determine that the individual lacks the capacity to make health care or financial decisions. In my experience, physicians are reluctant to declare that someone lacks capacity. It’s almost as if they feel that they are taking away someone’s decision-making capabilities rather than acknowledging that the person no longer has decision-making capabilities.
- Getting your loved one to stop driving
It took me 11 months to get my father to stop driving. Driving is something that represents independence. Remember when you first got your license? No one wants to go back to relying on others for rides.
- Getting lost
People living with dementia will often get lost in their own neighborhoods or on the way to a place they have visited many times before.
- Dysfunctional relationships
Dementia brings out the worst in families. Just when you thought you saw it all, you see something new. I have seen family members not respecting the POA, siblings with very different goals and new girlfriends or boyfriends with less than honest intentions.
- Financial abuse
If the individual living with dementia has money, be on the alert for financial abuse. This can come from strangers as well as from people close to the individual.
- Sundowning
Sometimes people living with dementia will experience sundowning, confusion or agitation that gets worse in the late afternoon or evening, possibly associated with the fading of light. We also talk about people living with dementia who have “challenging” behaviors. Although it may be very difficult, no one is misbehaving deliberately to drive his or her caregivers crazy. All behavior is a form of communication and it is the caregiver’s job to figure out what the individual is trying to communicate.
- Long-distance caregiving
Caregiving is hard, but when you have to travel far to check in on a loved one, it is even more difficult. It is especially burdensome on caregivers with school-aged children at home or demanding jobs.
Deborah S. Adler serves as the Director of Member Relations for LeadingAge Maryland, one of 39 state affiliates of LeadingAge, joining together to expand the world of possibilities for aging. LeadingAge Maryland mobilizes not-for-profit organizations and a host of other partners to shape the future of aging in Maryland.
For the past sixteen years, Deborah has held leadership positions with a variety of aging services- organizations in Maryland including Easter Seals Greater Washington-Baltimore Region, The Erickson School at University of Maryland, Baltimore County (UMBC), Coventry CareLink and Home Innovation Research Labs. Most recently she served as Director of Admissions and Community Relations at Integrace Copper Ridge, a not-for-profit community in Carroll County, exclusively dedicated to caring for individuals living with dementia and those who love them.
Deborah currently serves as the Secretary of the Board of Directors of the Maryland Gerontological Association, and previously served as the Chair of the Howard County Commission on Aging.
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