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The Faces of Alzheimer’s Part II: Face of the family caregiver and friends

This is the second part of a four-part series examining how Alzheimer’s disease affects the patient, the family and the public. The Pine Journal will run this series each Thursday in November to coincide with National Family Caregiver Month.

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In Part one, we identified the symptoms and doctors confirmed the diagnosis. Your loved one has become one of nearly six million Americans with Alzheimer’s disease (AD).  Alzheimer’s is the sixth leading cause of death in the nation. People with AD live, on average, four to eight years after diagnosis, although some live up to 20 years. Family members now begin what’s often called “The Long Goodbye.”     

Facing Alzheimer’s at home

Seventy percent of people with AD still live at home, where their comfort level is highest. The primary caregiver, usually the spouse, faces a tremendous challenge. The job of caregiver at home is both stressful and demanding.   

For the impaired person and their spouse, life will never be the same. They exchanged wedding vows long ago as a sign of their love for one another. The vows cemented their relationship: for richer or poorer, in sickness and in health. They honored those vows. Now, with Alzheimer’s disease at hand, “poorer” is probably close behind. For a while, commitment to their marriage enables them to make care-giving at home work.

President Obama, in recognizing National Family Caregiver Month, honored the spouse by saying, “This month and throughout the year, let the quiet perseverance of family caregivers remind us of the decency and kindness to which we can all aspire.”

Kristine Dwyer, LSW, MS and local care consultant, provides support and consultation to caregiver spouses and families of dementia patients through Volunteer Services of Carlton County, Inc. (218-393-7003).

“The caregiver is the key to the care-receiver being able to remain at home longer, and the well-being of both parties is vital,” said Dwyer. “It is also important for family members to take an active support role, offer respite care to give caregivers a break, and work as a team since Alzheimer’s disease impacts the whole family system.”

Dwyer recommends that families contact the Alzheimer’s Association for support and information (218-733-2560). Carlton County Human Services in Cloquet can be beneficial in obtaining help such as energy assistance, SNAP or health insurance.    

Making the home safe

Simple retooling of the home environment increases the safety and security of the person with AD. Behavioral symptoms can be reduced by helping a person with dementia feel secure and comfortable. What can be done? By using common safety sense, you’ll find unlimited things to help the patient thrive. The book “The 36-Hour Day” offers many suggestions. Below are three examples of what caregivers should consider when re-tooling for safety:

1.  Make the bathroom, the most dangerous room, into a safe environment by removing items. Things like razor blades, medicine, and even shampoo can cause harm.      

2.  Eliminate room clutter by simplifying layout. Throw rugs and low furniture cause tripping. Items in the way make the person try to think through more things, leading to accidents.

3.  The stove is a fire hazard. The person may try cooking, forgetting to turn burners off. Check under burners for hidden things.

Ten basic suggestions for caregivers

1.  Be informed about Alzheimer’s.

2.  Share your concerns with the impaired person.

3.  Try solving frustrating problems one at a time.

4.  Get enough rest.

5.  Use your common sense and imagination.

6.  Maintain a sense of humor.

7.  Establish environments allowing freedom but offering structure a confused person needs.

8.  Remember to talk to the person.

9.  Have ID necklace/bracelet made for them. Consider Lifeline alert system.

10. Keep an impaired person active but not overwhelmed.

(Source: “The 36-Hour Day”)

Learning about nutrition and how the impaired person eats, how to provide recreation and activities, how to communicate effectively with your loved one, and even how setting a comfortable chair close to you so the person can watch you, are examples of important little things in caregiving so the confused person can remain home.

The stress of Alzheimer’s care on the spouse is well-documented. The result of a recent Finnish study about family caregivers, reported in the Duluth News-Tribune recently, suggests that spouses should receive mental health evaluations when their loved one is diagnosed with AD. The study indicates spousal caregivers shouldn’t put their own health at risk.

The power of support

According to Candi Fabre, Cloquet area caregiver support group facilitator, it isn’t unusual for long-time friends and neighbors to avoid interaction once AD is diagnosed.

“It becomes a common ‘fear of the unknown’ situation,” said Fabre. “Plus, change is difficult to accept.”

By following advice from the spousal caregiver, long-time friends can continue being an important part of the confused person’s life. If you enjoyed doing things together in the past, you can still do things together now. Working with the spousal caregiver will help you discover what those activities are. The confused person will hopefully remember you as an old friend.  

Caregivers who devote all their free time to taking care of an AD patient will eventually break emotionally. Probably the best outlet for stress release is the family caregiver support group. These folks have walked in your shoes and can become wonderful new friends.

Because she wanted to stay involved after seven years attending group in Minneapolis, where her sister battles Alzheimer’s, Candi Fabre volunteered to lead the Cloquet group. When asked what the main benefit for group members is, she said, “They find out they’re not alone. My job is to help group members help themselves.”

Ernie Strandberg’s wife has Alzheimer’s. The Carlton County Sheriff’s Department chaplain is also a notable senior student at FDLTCC. Discussing how group helps him with stress release, Ernie said, “Just talking about issues helps release the stress.” When asked what prompted him to attend college, Ernie responded “The days become draining and exhausting. Dwelling on the situation makes living difficult. I needed something new to do, I needed social connections.”

People sharing feelings during group deserve and expect confidentiality. What’s said in group stays in the group. The caregivers support group meets the third Thursday each month at 1 p.m. in the Cloquet Public Library. A group also meets on that date in Moose Lake at 10 a.m. in Hope Lutheran Church. Duluth provides several group meeting opportunities.

Pine Journal columnist Jill Pertler captured her mother’s Alzheimer’s battle a few years ago in her column “Fish out of Water.” The column is reprinted at the end of this article today. It is powerful, and among the finest columns I’ve ever read. If you’ve watched someone fight that battle, or if your loved one is fighting that battle now, please read it.  It will move you as few columns have.    

Recommended books about Alzheimer’s

  • “Still Alice” (movie also)

  • “Water for Elephants” (movie also)

  • “Living in the Labyrinth”

When adequate home-care is no longer possible, the family must find a professional facility for care-giving. Next week, we explore the professional caregivers, plus examine the enormous cost of Alzheimer’s care, in Part III — Face of the professional caregivers and the public.

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