Most Caring Steps

“After all the tests, when the doctor gave my husband Burnell the ‘verdict’ of Alzheimer’s disease, I felt frightened, alone, and desperate. I didn’t know where to turn,” said Beverly Taylor, a retired school guidance counselor in San Francisco, Calif.

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Taylor, a pillar of her African-American community in her city’s Bayview neighborhood, is the kind of person other people turned to for guidance. She is an elder at the St. Paul Tabernacle Baptist Church, but at that moment she felt scared and on her own.

Related: Alzheimer’s Made Clearer

A diagnosis of Alzheimer’s disease causes a kaleidoscope of interconnected emotions. Fear, anger, sadness, and confusion collide and shift for the person with the diagnosis, as well as for his or her spouse, children, friends, employers — anyone affected by the diagnosis.

Beverly Taylor, a church elder, is a person others turn to in crisis. But at the moment of her husband’s diagnosis, she felt scared and on her own.

Focusing on a few priorities early on can help. For individuals and families coping with an Alzheimer’s diagnosis, here is the list of smart, practical next steps to consider.

1. Learn all you can about Alzheimer’s.
Some people master their feelings by gathering more information. This helps anchor all the uncertainties in reality. “I went to every workshop I could find and learned that Alzheimer’s is a medical condition, not something to hide from. Once I understood the disease, I could accept it,” Taylor told LifeZette.

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2. Talk to others on a similar journey.
Taylor reached out through her church and, to her surprise, found many members who were living with dementia.

“Knowing that I was not alone helped. When I needed to talk, I could call someone who would understand,” she said.

3. Communicate with your loved one.
The early stages of Alzheimer’s are the best time to talk with the diagnosed individual about their feelings and wishes for the future. This may be difficult at first.

“When Burnell learned about the diagnosis, he wanted to end it all. I asked him, ‘Don’t you know who you’re married to?’ He understood that I was going to take care of him. He looked right at me and said, ‘Thank you,’ and we went on together as we had for the past 40 years,” Taylor said.

4. Focus on strengths.
Although many changes lie ahead, defining strengths for as long as possible keeps identity and dignity intact.

“Bernell’s strongest point was he loved life, looked on the bright side, and took pride in his appearance, even at 69 when he was diagnosed,” Taylor told LifeZette.

When asked about her own strong points, she said, “My ability to speak up saved me! I had to get my voice heard to get him the care he needed.”

Her faith, another strength, gave her patience and courage. She believed that “the Lord would not put before me more than I could bear.”

Her faith gave her patience and courage: “The Lord would not put before me more than I could bear.”

5. See a lawyer specializing in elder law.
Laurie Shigekuni of Laurie Shigekuni & Associates, which has offices in San Francisco and Pasadena, California, works exclusively with older people. Shigekuni shared her inspiring passion for helping elders at an informational talk at a senior center.

Related: Can Alzheimer’s Be Catching?

“Elder law attorneys can help with wills, trusts, estate planning and protecting assets. We can set up a durable power of attorney, a living will, or an advanced care directive. We help apply for disability benefits and Medicaid for long-term care,” Shigekuni said.

6. Consider a financial planner.
A financial planner can optimize the transfer of assets for the benefit of family and the surviving spouse, or set up a short- or long-term budget. Taylor got help planning future expenses down to the last detail.

“I know it seemed abrupt, but we even budgeted for our funeral expenses and felt better after it was  done,” she said.

7. Build a health care team and network of informal support.
The team Taylor put together included her husband’s doctor, his nurse, a home health aide (who has been with her for eight years), volunteers from Catholic Charities, members of her church, and friends to help with driving to appointments.

“I wasn’t afraid to ask for help,” Taylor said. “If you let people know you need support, you are more likely to get it than if you suffer in silence.”

8. Think about long-term living arrangements.
Some people think about downsizing to a more manageable home, moving closer to children, or consider a move to assisted living. Moving is confusing to someone with Alzheimer’s. Making a big change early gives everyone a chance to adjust, establish new routines, and make new friends.

“My doctor told me, ‘You’ve got to put yourself first, otherwise there will be no one to take care of him.’”

Taylor and her husband had no children, and they made their decision to stay in their own home from the beginning.

“We wanted to plan ahead, but our decision was to stay home. We had lots of help all the way through, and Burnell died at home after 11 years with the disease,” she said.

9. Investigate community resources for individual and caretaker.
Caregivers support groups reduce isolation and connect with other caregivers going through similar experiences.

“My doctor told me ‘You’ve got to put yourself first, otherwise there will be no one to take care of him,’” Taylor said.

Resources can include adult daycare, delivered meals, home visitors, and respite care that provides temporary relief for the primary caregiver. Contact your area Office on Aging and the Alzheimer’s Association for a list of resources.

10. Attend to body and soul.
Continue on with a healthy lifestyle such as walking, balanced meals and social engagement for the individual and caregiver for as long as possible. Physical contact, such as hand holding and touching, can be comforting and helpful. Attention to grooming, appearances, and personal care are important ways to support pride and respect.

This was true for Taylor who said, “I kept up his appearance. Dignity was important to Burnell — that was the kind of man he was.”

Related: Am I Doomed to Alzheimer’s?

As for the soul, individuals with Alzheimer’s may have trouble making themselves understood, but they do not stop experiencing emotions. Taylor attended to her husband’s soul by connecting with him through his feelings.

“Sometimes he was angry and belligerent, and sometimes he was frightened and tried to run away, but I tried not to give in to negativity. I tried to understand what he was trying to say, to be as patient and compassionate as I could. And of course we went to church until the very end,” she said.

For those without Taylor’s strong spirituality, meditation, a walk outdoors, yoga, or even time with a pet can help the caregiver connect on a higher level.

Taylor lost her husband two years ago.

“He used to say, ‘There is nobody but you, me and the Lord.’ Now there is just me and the Lord. I feel good about myself and the way I handled what was put before me. I regret nothing,” she said.