ABCs for Every Alzheimer’s Caregiver
A: Accept that some of the hardest decisions you will ever have to make lie ahead. For example, when does nursing home care become the best or, perhaps, the only option?
B: Be a creative problem solver. When I needed Mom to go to daycare, I persuaded her that she would be there to help others. The result? Her amazing shift from stubborn refusal to pleasurable anticipation.
C: Care for yourself. The stress can affect your emotions, memory, sleep, and physical health. Make a conscious effort to eat well and exercise. Fit in a little time to relax with a book, a warm bath, a pet, or whatever you enjoy.
D: Do laugh when you can —at yourself or with your loved one. Mom and I would chuckle over our Sheltie’s antics.
E: Expect the unexpected. One day I missed work to take Mom to the doctor because her back hurt so badly, she could barely get out of bed. In the exam room, her opening conversation with the doctor proceeded from “How are you?” “Fine” to “What’s the reason for your visit?” “I don’t know.”
F: Forgive yourself—often. You will lose your temper. You will feel guilty.
G: Go through the ups and downs of living with an Alzheimer’s patient with as much equanimity as you can muster. What is “normal” one day may not be the next. Mom still wanted to wash the dinner dishes—until one night she almost used drain cleaner.
H: Have patience with the affected person. The repetitions and the unpredictability will be frustrating.
I: Investigate respite care while the patient is at home. It can give you a worry-free overnight or weekend break.
J: Join a support group. Interacting with other caregivers in person or online lets you know your problems are shared.
K: Know that you will lose the person you love many times before she dies.
L: Learn about hospice . Comfort care near the end of life is a blessing—for the patient and the caregiver.
M: Make lists —of the day’s tasks, of the patient’s medications, of things you are grateful for.
N: Notice that many may ask about the sufferer, but not about you. Don’t be hurt. Few realize that you also need “care.”
O: Observe the signs of her Alzheimer’s in the face of her denial so you can intervene. Leaving ingredients out of recipes or getting lost while driving requires changes.
P: Put your disbelief aside and read The 36-Hour Day , but not all at once. Small sips rather than big gulps of information are not as hard to swallow.
Q: Question the medical professionals who are providing treatment until you’re sure you understand what they’ve explained.
R: Respect the wishes of your loved one . Getting a power of attorney and an advanced directive early will make later decisions easier. When Mom finally was unable to eat, deciding whether or not to use a feeding tube was less painful for me.
S: Seek support . Look to your family, of course. But friends can spend time with your loved one or take her to appointments or let you “vent.” And seeing a psychologist for depression is not a failure. Taking pills or talking with a therapist can help you keep your balance when everything around you seems unstable.
T: Take over care decisions as they become necessary. These will include managing finances and pre-planning a funeral.
V: Value the small, ordinary moments: her happy memory triggered by a photo, her face brightening as she sits in the beautician’s chair, her childlike love of chocolate milkshakes.
- U, X, Y, and Z are missing letters from this alphabet! Do you have any Alzheimer’s-related tidbits to share that fit these letters?
- As a caregiver, do any of these letters resonate with you? Why or why not?