There are more than 16 million Americans caring for someone with Alzheimer’s or another dementia, including 1.6 million in California alone. I am one of those people. I am responsible for my mother’s care.
In the midst of this untreatable and debilitating disease, it’s hard to think in these terms: I’m one of the lucky ones. I have a lot of support; most caregivers do not and often feel overwhelmed, stressed, and even depressed. Don’t get me wrong, I have those same feelings, just not all day every day. Support is crucial for the person living with Alzheimer’s, but it’s also essential for their caregivers.
Even with support, I still feel I’m on a roller coaster, because just when you think you’ve solved a problem and are on top of handling things, behaviors change and it feels like starting all over again. This is the hardest thing I’ve ever had to do.
Look at some of the common problems caregivers face (a majority of whom are women):
• Getting a proper diagnosis for their loved one;
• Coping with the disease and how a loved one is consumed by it;
• Having strength to be patient as the disease unfolds;
• Dealing with the impact caring for someone has on your own health, welfare, and financial well-being, including the feelings of guilt, anger, and being alone;
• Managing the seemingly constant changes in patient behavior;
• Tackling the activities of daily living (including medication management, dressing, bathing, eating, toileting, ambulating, and other tasks);
• Motivating your loved one through every day;
• Acting as health care advocate;
• Organizing and monitoring insurance and financial arrangements; and
• Having the time to do all of the above as you maintain your own life.
These problems exist whether your loved one is at home and you’re handling most of the care, you’re supplementing your time with caregivers from home health agencies, or you have moved your loved one to an assisted-living community. Unfortunately, I have personal stories to tell about all of these circumstances as I travel with my mother on this journey that now extends into its sixth year since her Alzheimer’s diagnosis (the onset of an earlier dementia was evident at least 12 years ago). But instead of focusing on the depressing stories, let me tell you how my ability to cope is aided by resources in the community (in person and online).
My mother has been a patient at the UCSF Memory and Aging Clinic since 2010; she was on the waiting list about six months prior to her acceptance. She’s seen the same neurologist every six months since then. In addition, I have access to a cadre of professionals, including nurses and a nurse practitioner, social workers, and a clinical neuropsychologist among others — who are all invaluable resources for me. I also consult with a geriatric care manager. She is trained in the disease, living accommodations, caregivers, etc.
Resources from the Alzheimer’s Association (alz.org) are critical. They include workshops, support groups, conferences and online information, as well as the association’s 24/7 help line.
But the reality of Alzheimer’s is that not everyone caring for someone with the disease is as lucky as I’ve been. This country’s system of dealing with Alzheimer’s isn’t working; in fact, a recent report (“2019 Alzheimer’s Disease Facts and Figures”) from the Alzheimer’s Association shows that primary care doctors aren’t offering routine cognitive assessments to their patients or referring families to clinical and community resources.
Don’t wait until you or someone you love needs help in dealing with Alzheimer’s. Contact Congresswoman Nancy Pelosi today to let her know Alzheimer’s should be a priority in this country (pelosi.house.gov). Encourage Speaker Pelosi to fully fund the BOLD Infrastructure for Alzheimer’s Act (congress.gov/bill/115th-congress/senate-bill/2076). If funding is provided, money will be made available to state public health departments to address the Alzheimer’s crisis and help meet the needs of caregivers.
What you don’t find on the Alzheimer’s landscape today is a comprehensive approach to dealing with the disease and providing support to the family. As a result, more patients with all dementias spend more time in emergency rooms and in need of health care services. You probably know at least one person right now who has this debilitating disease and you’re aware of the caregiver stress syndrome. Help shine a light on this pressing issue.
Patty Burness can be found on Twitter (@pattygb), Instagram (pburness) and reached by e-mail at [email protected]