SANDWICH GENERATION: Dementia and the Caregiver
Sandwich Generation, Dementia, & Caregivers
You may be part of the Sandwich Generation. Do you or someone you know provide care or assistance to an elderly person with dementia?
For those of us who find ourselves attending to the needs of our children (even young adult children) and our elderly parents, it is easy to feel sandwiched between them in ways that can be stressful. According to Pew Research, there are an estimated 43.5 million Americans providing unpaid care to others who are over the age of fifty. My husband , my brother, and I have been among those 43.5 million and to some degree even as our daughters moved into their young adult years we are still finding ourselves part of what has come to be known as the sandwich generation.
If you or somone you know is sandwiched like I have been, I wanted to offer some insights, advice from experts I have encountered, and most of all hope to help you navigate these turbulent waters.
The statistics provide a good overview of the scope and extent of the problems facing the sandwich generation, but they do little to address the physical, emotional, and spiritual costs of caring for an elderly parent. For many unpaid caregivers just being able to look through a new lens or to have small ideas about how to manage an elderly parent’s behavior can feel like a lifeline; I know that occasionally as I watched first my father and then my mother succumb to the ravages of dementia it was sometimes the smallest suggestion that not only made a big difference but felt like I’d been thrown a lifeline. Those instances often opened an avenue that renewed my hope and made it a little easier to press on.
OUR FAMILY’S JOURNEY
My parents moved to Western North Carolina in 2005 when my children were in kindergarten and third grade. It was a time of great joy, but in retrospect soon after they arrived my father began to step back from the role of fixing anything that broke around our house and his. Before long we saw reason to be concerned about some of the decisions he made and within a few years this man who had thought nothing of making a twelve hour trip from Florida to Asheville was giving us reason to be concerned about his safety on the road. M father passed away in 2010 with significant dementia and looking back on those final years I am reminded of how stressful it became to try to juggle the demands of a growing family , declining elderly parents, and work. I quickly learned that consistent adherence to my own exercise and eating right was a vital element of an effective response to being sandwiched in. If you wish to honor your mother and father as the Commandment requires, what else can you do but to make the necessary accommodations.
The Pew Institute found that 66% of caretakers are women and the majority of those are married and employed. They estimated that over one’s lifetime a working adult who also provides unpaid care to a family member may experience a loss of income of over $300,000. One in four people offering such care are have taken leave from work to care for a family member.
In my experience I had no choice but to adjust my expectations. For example, keeping my house tidy was one of those areas that I reluctantly surrendered. My work schedule was slightly out of step with many of my colleagues since I worked through the lunch hour so that I could be free to pick my daughters up from school and caring for my parents. When you are part of the sandwich generation it helps to keep in mind that your co-workers and friends who are not feeling the pressure of being sandwiched in have trouble understanding why your work hours have to be different or why you are unavailable after work to socialize. I found that I could not afford the luxury of making spontaneous plans since caregiving does n’t easily get put on hold when something else comes up.
After my father pased away, my mother began her decline. At 92 years old, she is now living with severe dementia that required us to move her into a memory unit. By age 85 it is estimated that 50% of individuals show evidence of dementia or significant cognitive decline. We found that in order to ensure that my mother received the care she needed it was necessary that we devote even more time. During a typical week one of our dear friends spends about four hours with my mother during the day to make sure she remains well hydrated, that her diapers are changed regularly, that she is adequately nourished, that she remains stimulated, and that she avoids a fall; the sort of event that can be catastrophic in the elderly. In the evenings my brother or I and occasionally my husband spends between 2-3 hours after work at the facility to make sure she makes it to dinner, drinks enough fluids, and gets changed before bed. As my mother declines I feel great sympathy with what First Lady Nancy Reagan described as she witnessed her beloved Ronnie slipping away:
“You know that it’s a progressive disease and that there’s no place to go but down, no light at the end of the tunnel. You get tired and frustrated, because you have no control and you feel helpless.” She wrote in her memoir, “We’ve had an extraordinary life … but the other side of the coin is that it makes it harder. There are so many memories that I can no longer share, which makes it very difficult. When it comes right down to it, you’re in it alone. Each day is different, and you get up, put one foot in front of the other, and go—and love; just love.”
THINGS THAT CAN HELP
You will find that little things suddenly surge to the forefront. When a loved one becomes incontinent and can no longer alert you when they need to use the bathroom your family will face new expenses for that sort of care. In the end, it often seems that the care your parent receives often depends on the training, the experience, and the temperament of the staff that you must rely on to help you.
Nearly a decade ago we enrolled my father at Memory Care and were blessed to receive valuable guidance from Dr. Margaret Noel and the other stafff. Recently, we returned to Memory Care and thankfully, Dr. Noel was still available to see us. Her guidance and the resources she and the staff directed us to once again have been a lifeline.
Many communities have similar resources in which geriatric specialists offer everything from individual and family consultations, printed resources and libraries, classes for caregivers that may be in person or online, and much more.
There are some general guidelines when approaching and engaging with individuals with dementia seem obvious when they are pointed out but may be difficult to figure out on your own at first.
As your loved one declines they may be more attentive to (and reactive to) your emotions than your words. When you are feeling Hungry, Angry, Lonely, or Tired, (HALT) you may unwittingly arouse similar emotions in your loved one.
Many dementias impair short-term memory the most. This is why your loved one may be able to remember things from the distant past very clearly but be unable to tell you if they ate breakfast or what happened 10 minutes earlier. For that reason and others, it is often easy to think that if you just try a little harder to reason with your loved one it will help. It often does not.
THE 10 NEVER NEVERS
Memory Care provided us The 10 Never Nevers of Caring for Alzheimer’s Patients” that I have inserted here. Memory Care credits Health Press Releases with this list.
Never say, “REMEMBER”
Instead, REMINISCE (I remember when…)
Never say, “YOU CAN’T”
Never say, “YOU CAN’T”
Instead, say “DO WHAT YOU CAN”
Never COMMAND or DEMAND
Instead, ASK or MODEL
Instead, ENCOURAGE and PRAISE
Here are some other tips that can serve as a sort of roadmap. This list is a compilation from several sources.
- When you physically approach a patient with dementia it is best to be within their direct line of sight.
- It is especially important that when changing your loved one, somebody needs to be looking directly at them (often repeatedly explaining what is happening).
- The emotional tone in your voice will be picked up immediately by our loved one.
- There is strength in numbers; nobody can do this alone. Be willing to recruit help.
- Despite the tough times, caring for an elderly parent or relative provides endless teachable moments where your children can see what it means to care for family.
- Your loved one’s attention span is VERY short. Making eye contact, smiling and engaging with nonverbal cues before communicating with words can help focus their attention.
- It is easy to talk to your loved one like they are a child since their needs (and conduct) sometimes resembles that of a child. Try to avoid talking to your loved one in those tones or scolding them the way you might scold a child; they do not understand.
- It is human nature to fill the empty spaces in a conversation with talk and chatter. This may distress your loved one. To avoid endless chatter or nagging, sometimes just sit with your loved one, hold their hand, make loving gestures. The ability to understand those kinds of communications may be surprisingly well preserved.
As I have watched countless families who are part of the sandwich generation and I reflect on our family’s journey, I see that LOVE is the one thread that weaves through every tapestry. I have also come to realize that no two families will end up weaving identical tapestries.
Additional information and resources.
- The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss
- Bathing Without a Battle: Person-Directed Care of Individuals with Dementia, Second Edition (SPRINGER SERIES ON GERIATRIC NURSING)
Western North Carolina Resources
Memory Care offers educational programs for caregivers through its Family Caregiver College and offers information about local Support Groups. The next Educational Session for Caregivers is planned for July 19th to August 23rd 2018.