11

Self-Care

Being Your Own Best Friend

On commercial airlines, flight attendants tell you that if the emergency oxygen masks need to be used, you should put on your own oxygen mask first before attending to a child or companion. The point is, if you do not take care of yourself first, you will not be in a position to help others. This is especially important in dementia care because the care partner’s journey can be a long one.

As a care partner, it is essential to be your own Best Friend for your own sake. Only then can you provide good-quality care to your loved one who needs it. The Best Friends approach can help you gain more satisfaction from your care of an individual with dementia, improve his or her quality of life, and nurture connections among you and your family members.

This journey of acceptance and growth is beautifully described in a series of diary entries and Christmas letters written by Jo Riley, husband to Rebecca Riley, which you can read at the end of this chapter. You have already learned something about Rebecca’s experience as a younger person diagnosed with Alzheimer’s disease, but now you can also see this experience from the perspective of her Best Friend and care partner.

Also, for the person with Alzheimer’s disease or other dementia, being your own Best Friend starts with using your strengths for as long as possible and surrounding yourself with Best Friends. It may also involve adopting a particular philosophy, such as Rebecca Riley’s decision to live one day at a time, Beverly Wheeler’s intention to teach others, Dicy Jenkins’s steadfast belief in a higher power, Dorothy Troxel’s ability to enjoy a fun tea party with friends, or Jerry Ruttenberg’s continuing reliance on his sense of humor. Details from the Alzheimer’s experience of each of these individuals have been shared throughout this book; you can learn more from their “Biographies” at the end of the book.

WAYS TO TAKE CARE OF YOUR OWN NEEDS

Following is a list of things you can do to help take care of yourself. Yet, just as every person with dementia is different, every family’s situation is different. We hope that one or more of these ideas will be helpful to you.

Set Realistic Expectations

Because you care about your loved ones, you can easily lose sight of how much you can realistically give. Ask the following questions: What is the state of my health? How much of the physical care can I reasonably provide, if any? How much time can I spend on caregiving (away from employment or other family obligations)? What kind of family support do I have? How much money can I spend on caring for my loved one without jeopardizing my family’s financial well-being?

Review Your Living Situation

Step back from the journey to assess your living situation. Are you close to services or way out in a rural area? Is there a ground-floor bedroom and accessible bathroom? Is the house free from tripping hazards such as electrical cords? Is the lighting adequate?

Some families opt to have their loved one move into residential care or move closer to children. Try not to rush into hasty decisions. In-home care or support from a good day center can also be options. Be sure to give yourself some time after a diagnosis to carefully consider your options.

Use Services Early and Often

The previous chapter offered a helpful discussion of available services. Using support services early and often benefits you by connecting you to well-informed and supportive professionals who can offer not only education but important respite.

Rebecca and Jo Riley looked for a support group for both of them, agreed to utilize an adult day center, and eventually traveled the journey into residential care. Jo involved Rebecca in these decisions as much as possible. Each of these programs was a lifeline for them, where they could meet others going through the same experience. Most of the services also provide persons like Rebecca with needed socialization.

Find a Confidante

A trusted friend or counselor can make all the difference. You need someone to talk things over with, someone who will be nonjudgmental, respect confidentiality, and be understanding of your needs. A good counselor can help you or your family problem-solve, vent frustration, communicate more effectively, and make important decisions. To find a counselor, ask friends or colleagues, contact your local Alzheimer’s Association or Society, or check with your local Area Agency on Aging or senior center.

Jo turned to his children often to share his feelings. All through his diary he speaks about being close to them. Their acceptance and support was a wonderful gift to Jo and Rebecca.

Sometimes all it takes is one friend or family member to provide a shoulder to cry on or to be a good listener.

Practice Assertiveness

Often, it is difficult to express your feelings and needs. When stress or fatigue increases, it can be even harder. Practice assertiveness, and do not be afraid to speak up to family members and friends about your feelings and needs. It is okay to admit that you are confused or need more information and help. See page 223, Asking for Help, for a review of key ideas on this topic.

Jo tells this story in his diary: “We had an interview with a social worker and a nurse about a support group for Rebecca. They did not talk directly to Rebecca but always asked me and directed the conversation toward me. That made Rebecca feel left out. When I called it to their attention they were surprised and shocked.”

Jo’s assertiveness helped the professionals learn to be more empathetic and sensitive to Rebecca. Rather than walking away in anger, he provided feedback that helped preserve the relationship with the social worker and nurse who did have valuable information to share.

Develop Strategies for Handling Unhelpful Advice

Advice from a trusted friend or professional can be helpful, but care partners sometimes find themselves deluged with unsolicited suggestions. Friends and family mean well but sometimes their suggestions or comments, such as “Put him in a nursing home” or “She doesn’t seem that bad to me,” can create more stress. Helpful advice is a gift, but if the advice is not helpful or if it seems critical, develop a few stock responses such as “Thanks for your input” or “Thanks for your concern.”

Maintain Contact with the Outside World

Care partners who devote all of their energy toward their loved one can inadvertently shut out friends and family. Often, care partners must cut back on commitments and social activities, but balance is important. Make at least one call each week to a friend you have been too busy to see or talk to. You can also make new friends through support groups, introductions to families at day centers, or other programs that help families coping with dementia.

Jo kept working as a pastor well into Rebecca’s illness. After she died, he attended classes at the University of Kentucky.

Doing this helped Jo maintain his self-esteem and confidence, and kept him engaged with friends and other professionals.

Simplify Your Life

When your mother or spouse has a closet full of clothes and a collection of 200 ceramic bunnies you can often feel overwhelmed by all the things in the house. Too many clothes in the closet, for example, can make it harder to get the person dressed and harder to find things. Many care partners have taken this opportunity to discreetly dispose of “white elephants” and get down to the basics. Simplicity makes your daily routine easier and reduces stress.

Jo and Rebecca were wise to admit that their house was becoming too difficult to manage. They chose to dispose of much of their “stuff” and move to an apartment in a retirement center.

Fulfill Creative Impulses

Many care partners find that creative expression can be a positive way to cope with dementia. Care partners have written (poems, plays, novels, even an opera), produced films, journaled, and painted about their experiences. Creative expressions can help you channel your anger and despair into more positive outlets.

After Rebecca moved into assisted living, Jo was able to take a week off to help others: “I spent a week in Florida as a volunteer for Habitat for Humanity.” Participating in the creative process of designing and building a new home for others allowed him to stay connected to his long-standing interest in community engagement.

Building something with his hands that had a beginning, middle, and end was satisfying to Jo and fulfilled him at many levels, including a need to be creative.

Listen to Your Body

People providing care to individuals with dementia are at greater risk for premature disability and death than others of similar age who are not providing care. This is the result of numerous factors, notably the stress that comes from the tasks of caregiving. Make a concerted effort to eat properly, exercise, and pamper yourself. Consider getting regular massages or practicing meditation, among other rewards.

Be Good to Yourself

Zealously carve out time for yourself and try to maintain special activities, hobbies, friendships, or other things that give pleasure. You should also give yourself presents whenever possible, such as an afternoon to go fishing or fresh flowers from the local farmers’ market.

Jo found it satisfying to spend time at his favorite place: “We went to our cottage on Crystal Lake. We had all the family there and had a good time.”

Some professionals might have felt that going on a vacation would be “too much” for Rebecca. On the contrary, she enjoyed being in an old, familiar place that was beautiful, calm, and relaxing.

Plan Ahead

Because the progression of Alzheimer’s disease and other dementia is often slow, families usually have time to plan ahead. Consider, for example, the possibility that the other person might outlive you. Without a workable plan for this circumstance, a family’s financial affairs and care plan for the person can be disrupted.

Forgive Others and Yourself

Alzheimer’s disease finds people at their best and at their worst. When friends or family say or do the wrong thing, it is valuable to look at the underlying motive. That motive may be love and concern, even if what is said or done is not helpful. It is also true that the best care partners are often hardest on themselves. Give yourself permission to make mistakes, to have bad days, and to think angry, even shameful, thoughts. Even the closest friends have their ups and downs.

Write Down Your Caregiving Experiences

Many care partners, like Jo Riley, find that keeping a diary or writing notes about the experience can be helpful. If you jot down patterns of behavior, a diary can even become a problem-solving tool. It can provide a safe place to write about stresses, strains, and feelings; you can “vent” and say things you cannot say in public.

Fulfill Your Own Spiritual Needs

When bad news hits, many of us turn to our religious traditions or other spiritual pathways (like the arts and time spent in nature) to help make sense of the news. Traveling these paths can help you cope and give you strength. No matter how tough things are, care partners who take time to find the spiritual in themselves and who reach out to friends and family and their faith communities will experience more success.

Jo remained close to his faith community. His spirit was also enhanced by his love of nature: “Our summer was filled by drinking in beautiful sunsets, the blue skies, the sand dunes, the birds, and enjoying our many friends in Michigan.”

Jo’s spirit was touched by his religious faith as well as the magnificence of Mother Nature.

Maintain a Sense of Humor

The art of providing good care involves maintaining a sense of humor and striving to lighten up about life’s challenges. Watching a classic comedy movie or program on television, sharing a funny story at a support group meeting, or simply laughing with the person can help inoculate you against the stress and strain of caregiving.

WHEN EVERYTHING IS GOING WRONG

Even people who practice the Best Friends approach will find the challenges of caregiving overwhelming at times. Alzheimer’s disease can pose tremendous challenges to the most skilled care partner. For example, if the person has an undetected infection or is in pain, behaviors can throw a well-planned activity into chaos. Sometimes care partners get into such a slump (perhaps because of depression, fatigue, frail health) that they find it hard to take action. Their judgment can become clouded. Family dynamics can work for or against the care partner. In some cases, the care of the person is not the major challenge, but handling family disagreements and conflicts are.

One of the most important ways to be one’s own Best Friend is to take advantage of respite care opportunities. Our first choice is an adult day center. However, informal respite opportunities, such as saying yes to a friend or family member who offers to come and help for an afternoon, are also good options.

The following list of ideas of how to cope when everything seems to be going wrong has come from members of support groups. Some ideas are serious, others a little outrageous, but they are all examples of “stress busters” that help us learn to be our own Best Friends:

CONCLUSION

The Best Friends approach suggests that the caregiving experience is like one door closing and another opening. One care partner jotted down the following words when thinking about his future: new friends and relationships, travel, new hobbies, laughter, tears, healing, and pride in a job well done. Being one’s own Best Friend maximizes quality of life during the sometimes arduous tasks of caregiving. Even more important, it positions one for a life after Alzheimer’s disease or other dementia.

It is important for you to consider where you want to be in life in one year, three years, or ten years. Think about what relationships you want to have with your family and friends. What do you want to be able to say about your time as a care partner? The Best Friends approach is a life raft being thrown to you—a chance to redirect disappointment, anger, and pain, and instead find moments of joy in day-to-day caregiving. We ask you to be open to change. The Best Friends approach cannot take away a diagnosis of Alzheimer’s disease or other dementia, but it can improve quality of life for you and your loved one.

Best Friends Pointers

THE POWER OF A DIARY: REBECCA AND JO RILEY

The following pages contain excerpts from Jo Riley’s writings from the date of the diagnosis of his wife, Rebecca, in 1984 through 1999. We find his words valuable because they demonstrate that one can be a good and dedicated caregiver while being intentional about acting as one’s own Best Friend. Except for minor editing for clarity, the words are Jo’s.

July 30, 1984: When we went to see our neurologist after all the tests were in, he just very quietly said that Rebecca had Alzheimer’s disease. We were devastated! We knew something was wrong and were hoping that it would be a brain tumor or something else. . . . We left Barnes Hospital and drove toward Centralia, Illinois, . . . and had lunch. It was a sober lunch and a very quiet one. We resolved that we were going to make the best of it and live one day at a time.

When we learned of her diagnosis, I recalled that Rebecca began having trouble about a year and a half ago pronouncing some words. She was an excellent reader and a fast reader. She stumbled over some of these words, and I didn’t think anything about it. I recall now that was the first sign of trouble.

November 1984: We had an interview with a nurse and a social worker about a support group for Rebecca. They did not talk directly to Rebecca, but always asked me and directed the conversation toward me. This made Rebecca feel left out. When I called it to their attention, they were surprised and shocked. I think this is the first time that I had felt that social workers and nurses and doctors were thinking only of the families, they are not thinking of the patient. We learned there was a support group for caregivers but none for the patient.

Spring 1985: We planned our move to retire in Kentucky. I have been noticing that Rebecca is still having trouble reading and that she is having some trouble in writing. She is constantly referring to the dictionary and having trouble finding words. Our children have been fully supportive and want us to come by and see them.

June 1985: We went to Crystal Lake in Northern Michigan. We had a summer that was filled with visits. Our families knew of her condition, but Rebecca was beginning to feel left out. I think she wanted to talk to them about her illness but they were afraid to. This is another example of the loneliness that crept into her.

January 1986: We went to Hopkinsville, Kentucky, for an interim ministry. While we’ve been in Hopkinsville, I’ve noticed some things. She has always been an outgoing person, speaking and teaching. I’ve noticed that she is more withdrawn; she’s scared of people because she can’t remember names. She’s writing names down every place but has trouble remembering them. Her reading may be a little worse, but her writing is still good and legible. She has a hard time getting out the words she wants.

The trouble with Alzheimer’s disease is when people know someone has it they immediately shy away from the person. Rebecca knows this as a nurse. She sees it now that she has Alzheimer’s and it is a very depressing state. We as a people do not know how to treat people who are sick. They want to talk about it, but we are afraid to talk about it. The dictionary is now her constant companion. We need something for Rebecca. We feel that there is a need for a support group for the patient.

Summer 1986: We went to our cottage at Crystal Lake. We had all the family there, and it was a good time. I noticed that it takes Rebecca longer to plan and execute the plan. One thing that I have noticed is that Rebecca has talked more in the past year about getting a dog or pet. She has empathy for people and animals. She has commented about the butterflies; while driving, she doesn’t want to kill one or an animal. She loves birds and loves to watch them. I’ve noticed that she wants me with her more than ever. I guess she wants reassurance.

October 1986: Rebecca is carrying on as usual. She’s cooking, she’s doing her needlepoint, she’s singing in a church choir, and she is going with me whenever I go out of town. Sometimes I notice she doesn’t want to talk, and other times she enters into conversation.

She is carrying the checkbook and is doing a very good job writing a check. She said she is afraid of writing a check, but so far she has been very accurate. I think in writing the check she gets confused when having to write out the words on the check. She gets stopped on the spelling of “hundred” or whatever the figure is. She wrote all our thank you’s and kept them up to date. Thus far we know of no medicine, no treatment, or no cure. We’re living one day at a time.

Christmas Salutations

The following are the Rileys’ Christmas letters, which further chronicle Rebecca’s and Jo’s experiences with Alzheimer’s disease.

1987: At Christmas, our daughter Joetta and her husband Bill called us to say that they wanted to bring two friends with them. We said OK. It turned out to be two dogs. When they left, we were the proud owners of “Corky,” a Chinese Shih Tzu. He thinks that he is a person and is always at our feet.

Christmas is the spirit of love, which God has gratefully given to each of us and we extend to you. At Christmas time, the angels sang of peace and goodwill, which is translated, “Love to you.”

—Rebecca and Jo

1988: Jo served as interim minister for two months at Woodmount Christian Church in Nashville. It was a great experience working with the staff in this large metropolitan church. The byproduct was visiting many historical sites around Nashville.

After three weeks home in Lexington, we were off to the USSR for a pilgrimage to the Russian Orthodox Church, which celebrated their 1,000th year.

Rebecca had a big time in May when her family had a family reunion.

Christmas is the spirit of love, which God has gratefully given to each of us and we extend to you our love.

—Rebecca and Jo

1989: We got back home from the lake. Our summer was filled by drinking in beautiful sunsets, the blue skies, the sand dune, the birds, and enjoying the many friends in Michigan. We are enjoying our retirement with Corky, who requires a walk twice a day. May the love of Christmas be yours and warm your hearts and fill your life with Love.

—Rebecca and Jo

1990: The big news of 1990 for the Rileys was our move. In February we decided to move to Richmond Place, an elder retirement apartment that advertises as a place for “gracious retirement living.”

The move was frustrating and difficult for Rebecca because she thought that we were giving everything away. Now the move is over, she has settled down and likes our living situation.

As Christmas comes, we rejoice in knowing that there is love all about us. That’s what Christmas is all about. We pray that the Heart of Christmas will be in your home and your heart.

—Rebecca and Jo

1991: Rebecca has become a little more confused and dependent upon me for everything. She went everywhere that I went but wanted us to stay home most of the time. The children insisted that I investigate a healthcare facility. After long hours of anguished prayer, I selected one that had a personal care bed. On October 3rd, I made the hardest and saddest decision of my life—to take Rebecca to the Christian Health Center.

Within three days, the nurses said that Rebecca couldn’t care for herself and that she would have to move to intermediate care. My life has changed, for we did everything together. My ministry was always a coministry.

We wish for you a Merry Christmas and may the Spirit of the Christ child be in your heart.

—Rebecca and Jo

1992: My daughter Lucinda and her son Josh took the nice “old man” on a family hiking trip and camping trip in August to the Cascade Mountains of Washington state. We hiked every day. Oh, by the way, Corky, our little dog, was given away. Now I am all alone. . . . In the spring and fall, I enrolled in a UK [University of Kentucky] class that meets twice a week. We hope for every one of you a Joyful and Peaceful Christmas.

—Rebecca and Jo

1993: As understanding and love come down at this season, it has strengthened our family relationships, and at Christmas time we pause to remember what has happened to the Riley family during 1993.

Our primary concern is Rebecca who remains at Christian Health Center. Her health is still good, but we do not take her out of the center often.

I go twice a day to feed her. While she is walking, she notices other patients in wheelchairs and tries talking to them. She doesn’t recognize anyone but me and sometimes not even me.

During the year, I haven’t allowed much grass to grow under my feet, attending Elder Hostels on Catalina Island, California, and at the Art Institute in Chicago.

I want all of us to feel the Spirit of Christmas and in our hearts to experience the Love, the Hope, and Faith of a Joyful Christmas.

Yours in Christmas love,

—Rebecca and Jo

1994: Christmas is all about Good News and has joy for its theme. Throughout the past year, we all have had our “ups and downs,” but when we recall the message of Christmas, we can have truly a spirit of Hope.

My schedule has revolved around going to visit Rebecca. She brightens up when she sees me but hasn’t called my name for more than a year and a half. (I doubt she knows me but laughs and smiles as she recognizes me as a person who comes to see her.)

In March, I spent a week in Florida as a volunteer for Habitat for Humanity. In May, a reporter from the Lexington newspaper interviewed several of us from Richmond Place who have bequeathed their brains at death to Alzheimer’s research. There was a large picture of me and two others in the magazine section. I said I wasn’t quite yet ready to give up my brain!

May you find the spirit of Love and a feeling of Hope this Christmas.

—Jo

1995: Love is what makes the world go round is a line of an old song. That’s what Christmas is all about: Love—the glue that ties a family together, the bond between friends, the goodness that we express to others, the caring for others, and the spirit of friendship.

At the time of our 50th wedding anniversary all of the children surprised us with a visit. On Saturday noon we decided to have a picnic in the park as it was a beautiful day. We took Rebecca out. We hope she enjoyed it. That evening, they surprised me with a dinner with many close friends. The evening added to my special recollections of Rebecca.

Josh, our grandson, and I had a trip in October we will never forget. We traveled 1,000 miles by van to Churchill, Canada, to see polar bears in migration. We saw six polar bears and two white foxes.

At this Christmas season, I wish for you all the Christmas Joy and Love.

—Jo

1996: The Christmas message is a time for growing. Most of nature is dormant at this season of the year but Christmas captures our imagination and fills us with hope. Virginia Bell and David Troxel have written a book this year, The Best Friends Approach to Alzheimer’s Care. Rebecca’s life will live on in this book.

You will note that I keep busy for an old man. Besides the computer course, I attend the Donavan Forum at the University of Kentucky twice a week, and I spend as much time with the children as possible.

I hope for you the love of Christmas.

—Jo

1997: The spirit of Christmas is expressed in the words that we use in this season of joy. “Peace on Earth” is the message we sing with great expectation. I am grateful for the staff at the Christian Health Center. They are so good to Rebecca. They always have a smile for her, call her by name, often talk with her about being a nurse and give her a gentle massage, something she has done so many times for others. Rebecca had expressed early in her diagnosis her fear of not being treated as a “real person.” Her caregivers work hard to make her feel special.

This Christmas all three children and their families are getting together at our son’s house, and I will join them. It is difficult to think of celebrating Christmas without Rebecca being present.

May you have the spirit of Christmas, which is Peace, the gladness of Christmas, which is Hope, and the heart of Christmas, which is Love.

—Jo

1998: I have a list of folks I know, all written in a book. Every year at Christmastime I take a look and that is when I realize that these names are all a part, not of the book they’re written in, but a part of us.

Rebecca is now confined to a wheelchair and her bed. No longer can she stand alone, and it takes two nurses to get her up, which is done three times a day. She had always been known as the “walker” at the center. I still go twice a day to be with Rebecca and feed her.

I have attended two elder hostels this year and visited with all the children. As we celebrate Christmas, may I wish for you a “Glorious Christmas.”

—Jo

1999: The most unforgettable moment for me in 1999 was the passing of Rebecca on August 26. I stood at her bedside and saw her breathe her last breath as she slipped into eternity. What can I say about Rebecca’s life? She had her faith and the lasting beauty of a gentle spirit. She demonstrated her hope through her children. She let each one develop as they wished. She practiced her love toward all people and I felt it the most.

A part of a prayer written by Rebecca included, “Father of us all take from us anxiety for tomorrow’s food, clothing, and tomorrow’s fate. Dissipate our preoccupation with things. We know that we will have wisdom and strength to act after we have accepted your peace.”

The children and I have been overwhelmed by the expressions of sympathy that so many of you have shown to us.

Yours in Christmas love.

—Jo