How to cope when the person who never forgot birthdays and guided you to adulthood now needs your help to navigate life with dementia. (Peter and Maria Hoey)
You found her reading glasses in the fridge, saw bewilderment overtake him in the grocery store, heard from a concerned friend that something didn’t seem quite right. Suddenly, your roles are reversed: That person who never forgot birthdays and guided you to adulthood now needs your help to navigate life with dementia.
To stay the course, caregivers must rest when they can, flex when they must and — most of all — reach out for help.
Brace for change
It will be constant, experts say. One day — or hour, or minute — a person with dementia will seem all there, only to slip into confusion the next.
“A new normal” emerges, says Shiral Torres, a Burbank entrepreneur and parenting teacher who was the primary caregiver of her mother, Shirley, for roughly 11 years, until she died last year.
Then “normal” disappears and another “new normal” takes its place.
“It’s about trying to get to know that person again and again, and finding ways to communicate with them,” says Janet Cromer, a Maryland counselor who teaches “stress resilience” to family caregivers. “Caregivers need to find new things to love or admire” in those who now depend on them.
It helps to remember that “it’s the disease, not him,” says Sarah Davis, a Santa Rosa financial professional whose husband, Buz, began losing his words in 2014 and was diagnosed with Alzheimer’s last year.
Get or make a practical assessment
Early on, most people want to live independently. Often, they can.
Caregivers (or “care partners,” as they may be called at this stage) will need to assess their loved one’s capabilities and environment to gauge how much help they will need. Most will soon need help keeping appointments, managing money, keeping track of medications, eating regularly and getting around.
Sticky notes can help. Post a care partner’s number near the phone. Note which button on the TV remote turns the screen on or off. Leave reminders of when you or another care provider will return. After pills are taken, attach a note that reads: “Do not take me!”
The Alzheimer’s Assn. recommends having a caregiver or person with early Alzheimer’s write out the next day’s schedule well before bedtime. Then leave the list by the bed to review first thing in the morning, when people with dementia are rested and usually most organized. Leave plenty of time to prepare for appointments.
Gadgets can help
For those who used them before dementia set in, computers, mobile phones and tablets can help with memory lapses. Program useful numbers into a phone — along with photos, if possible.
Medication can be stored in containers with separate compartments for each day of the week. If needed, use one for the mornings and another for the evenings; label them and keep them in separate places. A device called MedaCube will send you a text message if a dose was missed.
Trouble with gadgets can signal that it’s time for more support. When Torres’ mom tried to take a phone call on the TV remote, Torres knew that caring from a distance wouldn’t work anymore. Her mom, too, was ready to move in with family.
Keep getting out
As loved ones find their independence shrinking, outings take on added importance. Walks, gardening or familiar physical activities can provide exercise and boost mood. Cooking, shopping or planning a menu are sociable endeavors that help reinforce healthful eating.
Torres kept a tradition of Tuesday outings — for lunch and shopping, or to the library and for ice cream. For years, she took her mom to join friends for a bimonthly Chinese meal. Later on, those friends brought lunch to the house. Pleasurable old habits can provide quality social time, even if the venue changes.
Build in music
Davis organizes activities around her husband’s long-standing passion for music: concerts, sing-alongs with friends and a weekly singing class.
“The isolation of this disease, I sometimes think, is 50% of the problem,” Davis says. “Originally, he sang for perfection. Now he sings for the beat. I sing along. The music teacher sings along. It’s so much fun.”
She keeps a book of songs that spark joy — and apparent memories — for her husband: “Amazing Grace,” “You Are My Sunshine” and standards by Bob Dylan, Elvis Presley and Dolly Parton. Dementia researchers believe that even after words falter, the brain responds to music, particularly that learned and loved early in life.
Build in touch
Davis swears by a weekly massage for her husband. “When he would have massages, I realized I was having regular conversations with him,” she says. “He’s better after he’s had a massage.”
Many caregivers say that the simplest of gestures — a hug — speaks volumes.
“I believe my mom loved a hug till the end,” Torres says. “She would have this little smile. I knew there was more going on than what we see.”
Learn to deal with anxiety
Caregivers say loved ones show signs of frustration or anxiety — loud protests, repeated questions, a grimace — if activities are too demanding or an environment is overwhelming. But sometimes, these behaviors could signal a need for more activity — a drive to the store, or a walk.
“You become a detective,” Davis says. “You ask yourself, ‘What does it feel like?’ and try to respond.”
Activities someone was good at in the past might bring pleasure (they’re familiar) or frustration (the person is aware of declining ability). Persistent agitation can signal an underlying problem, such as pain or a urinary tract infection.
Find time for one-on-one conversation when loved ones tend to be the most lucid. Turn off the TV or radio and prepare to talk and listen. It may be slow going. Be patient and resist the temptation to complete a loved one’s sentences.
Let him or her talk about feelings of loss; discuss when and how you can help. It’s important to respect your loved one’s dignity, especially when he or she becomes confused or can’t find words. You might agree on a nonverbal cue (a nod, a look) that signals permission to step in and offer a word or hand.
Focus on pleasure — in this case, simply being together — not on a goal.
The Alzheimer’s Assn.’s online Caregiver Center is a rich source of support, insights and tips, as is its message board. Its helpline, (800) 272-3900, can answer questions, address concerns and offer reassurance to caregivers or people with dementia.