“It’s a true little gem of a book.”
This week, I’d like to share an interview with me conducted by Vicki Tapia about the book I wrote with Kerry Mills, I Care: A Handbook For Care Partners Of People With Dementia.
Vicki is the author of Somebody Stole My Iron, a family memoir about dementia. You can learn more about it at http://somebodystolemyiron.com.
Vicki: Jennifer, it’s great to have you back for your second appearance on my blog. First of all, I’d like you to know how much I enjoyed reading your handbook I Care. It’s a true little gem of a book. I certainly would have appreciated having such a wealth of practical information at my fingertips after my parents were both diagnosed with dementia back in 2004. I’d like to start our interview with you sharing an overview of I Care, along with some of the topics covered in your handbook.
Jennifer: The goal of I Care is to help families have fulfilling, loving, and nurturing relationships and to minimize any depression and stress they might feel when caring for someone with dementia. Every chapter has many useful and practical suggestions to help families feel empowered, rather than defeated, while dealing with the daily trials of dementia.
I Care discusses how to prepare for the future while living in the present, how to make the most of your day, where to look for help when you need it, how to communicate effectively with someone with memory loss, and where to make changes in your home so it is safe. I Care clearly explains the essential information you need to be the best care partner you can be.
Vicki: Can you explain what motivated you to the write this handbook?
Jennifer: I’ve been working with people living with dementia and their care partners for 25 years. Although there’s a lot of information now available on the Internet for people to read about dementia, family members still have a real need for practical advice to help them get through the day. Far too often, individuals are given a diagnosis of Alzheimer’s disease or some other form of dementia, but then not told what to do next or how to continue to enjoy their life. Many people experience depression as a result. Families are left with a feeling of “Now what are we supposed to do? What is our life going to be like?” For years I have provided information verbally to families during one-on-one coaching or therapy sessions and I always wanted something simple and approachable that I could hand them and say “I understand that you are stressed and overwhelmed and it’s okay if you don’t remember everything I’m telling you to today. Take this handbook home and read a few pages each day and try some of the strategies I’ve suggested.” So many of the books about dementia are extremely depressing. I wanted to write something that was hopeful and helpful, something that made life better and more manageable.
Vicki: Some people may have noticed that you do not use the term “caregiver.” Could you explain why you’ve chosen “care partner” instead?
Jennifer: When someone helps care for someone else, we call him or her a caregiver. This is a natural title and one we all understand; however, when we use this title to identify a person who provides care to a an individual living with dementia, we are missing an important part of the relationship, as this “title” implies that there is nothing left for the person living with dementia to contribute. By referring to “care partners,” we are recognizing their contribution as “partners.” With whom are they partners? They are partners with the person who has dementia. This means that they are not only giving but also receiving—the same as the individual living with dementia.
Vicki: Could you address why written words are often more effective than spoken for the person with dementia?
Jennifer: Individuals living with dementia often have difficulty understanding information that is given to them verbally, such as directions, questions, or long conversations. However, reading is an ability that is often long retained through the course of many diseases that cause dementia. Not all memory systems are equally impaired. Reading uses a memory system that is less impaired by Alzheimer’s disease. By providing simple written cards and other visual cues such as signs, we are able to help someone with dementia to comprehend the information and thus be more independent.
Vicki: You recommend inviting friends and family to be part of the care team. What do you suggest to the care partner if friends/family decline, as my brother did each time that I reached out to him for help?
Jennifer: We each deal with the experience of dementia differently. Sometimes family members decline requests to pitch in and help because they are so emotionally distressed about the changes in their loved one. Other people don’t feel comfortable spending time with the person with dementia because they don’t know what to do during the visit. And unfortunately, some people don’t want to be inconvenienced. Since you have stepped up to the plate, they are not going to be bothered helping out! There is no easy answer to your question, but here are a few things you can try:
- Make your requests for a specific task and a specific amount of time. For example, “Will you please take Dad to his doctor’s appointment at 2:00 PM next Wednesday?” or “Will you please come over Saturday morning and help Dad shower?”
- Request help for tasks that are not related to care, such as cutting the grass, going grocery shopping, preparing meals, etc.
- Ask friends and family to participate in enjoyable activities that they did previously with the person, such as taking the person out to lunch, engaging in a hobby, exercising, visiting a mutual friend, etc.
Vicki: What’s one way to create “meaningful time” with the person with dementia, rather than simply “passing the time?”
Jennifer: Meaningful time is different for all of us. First, you have to know the person well, know what the person did throughout his or her life that had purpose and meaning to him or her. For example, I enjoy walking and hiking with my husband, spending time with my dog Lucy, and cooking with my daughter. Those are things I want to be able to continue to do as long as possible. Later in life, I may not be able to hike up a mountain or prepare a full meal by myself, but I hope that someone will walk around the block with me, find opportunities for me to pet and play with dogs and help bake cookies. Here are some ideas we discuss in I Care:
Art. Art is a proven intervention to help those with dementia relax and gain confidence, and it should be encouraged whenever possible. Whether you sign the person up for a drawing class at a local community college or have a high school or college art student visit your home, this activity can be very rewarding.
Reading. Yes, a person with dementia can often read for a long time. Reading is considered a preserved ability in dementia. The goal is not to see him or her read to understand as he or she once did or to see if he or she remembers and comprehends the text. The goal is to enjoy the act of reading. If reading continues, he or she will be able to maintain this ability for a longer period of time. We recommend that grandchildren ask a grandparent with dementia to read to them when they visit.
Church, Temple, Religion. People with dementia respond very well to religion that they have always practiced or even slightly practiced during their lives. Whether it is something as simple as reading the Bible at home, singing hymns, or visiting a church or temple regularly, a person with dementia will often thrive in this setting. Some people are happy just to be in spiritual settings, and they might not be in any of the places listed above. If this is the case, make this part of your regular routine.
Life Story. Write out his or her life story. Using pictures and a photo album, go through your pictures, one at a time, and discuss the picture. Write a simple story, using just a few sentences or phrases, and include it with the picture on one page in the album. If the pictures are labeled with names, there can be more than one picture on a page. The book will be a great resource throughout the course of the disease. It will be a joy for the person with dementia to look through and for all care partners who come through his or her life.
Pets. Call your local animal shelter or humane society to inquire about volunteering. Most organizations need volunteers to help brush the animals or put out fresh water. These are simple tasks, but it can be very rewarding to be part of this care. Be careful not to take too many animals home! One care home I know bakes fresh dog biscuits and delivers them every other week to the dogs.
Volunteer. Instead of looking for fun and entertaining things to do, find settings where the person with dementia is needed. Some suggestions include the local park system, soup kitchens, food pantries, or libraries. Contact your local church or temple and ask what volunteer work is available. It might be something as simple as collating the Sunday bulletin.
Music. A great deal of research has been done that validates the positive effects that music has for people with dementia. Contact local music therapy programs at colleges for students to engage with your loved one. Many students will be willing to do this for free to gain experience.
Exercise. This is one of the best things that all of us can do to reduce stress, stay healthy, and clear our heads. Research has shown that the same outcomes are true for people with dementia. The recommended exercise routine is to get at least thirty minutes of exercise, five days a week. This is a good habit for a person with dementia as well as his or her care partners.
Vicki: I have read guilt is a common feeling among those of us that are/were care partners. I know it’s true for me. Would you address a few ways we might learn to better cope with this guilt?
Jennifer: Many people who care for a loved one with dementia experience a roller coaster of emotions. It is sad to watch someone you love change, and it is also sad to see the reactive change in us. We often feel that we can’t do enough, and this guilt is only outweighed by the guilt of not wanting to be in the caregiving role in the first place, which pulls at us and creates a terrible game of emotional tug-of-war. Sometimes care partners feel guilty about needing a break because they feel like they are letting their loved ones down.
Care partners often burden themselves with a long list of self-imposed faults that are either imagined or unavoidable. Rather than treating themselves with compassion, care partners tend to beat themselves up and say, “I shouldn’t lose my temper with someone who has dementia,” “If I could take better care of my husband, he wouldn’t have to live in a nursing home,” or “I should stay home with my wife instead of playing a round of golf with my friends.” These feelings of guilt stem from doing or saying what you believe is the wrong thing, not doing what you think is enough, or not behaving in a manner that you think is right. Guilt exists only in one’s mind and is often out of sync with reality.
Negative self-talk and feelings of guilt are destructive and counterproductive. Are your intentions good, but your time and resources limited? As a care partner, all you can do is your best with the skills and resources at your disposal. Acknowledge that you don’t have all the answers, and reach out to others for help. No one is perfect. It is okay to make mistakes; we all do. Care partner guilt is almost unavoidable. You are going to feel guilty occasionally, but ask yourself what is triggering the guilt and give yourself permission to let it go. Accept that there will always be a gap between perfection and what you can actually do as a care partner.
Do Not Let Guilt Get the Best of You
- Determine what is causing the guilt.
- Try mentally and emotionally switching places with the person you feel you have wronged. How does he feel? Does he feel he was wronged? What does it feel like to be disappointed or ignored?
- You cannot change what happened, but you can make amends. If you can fix the problem that is creating this guilt, then do it. Learn from the situation, and move on.
- Reassess your expectations and make them more realistic. If you have tried all you can to change the situation that is causing the guilt, be kind and forgive yourself.
- Rely on something other than yourself for help. If you are spiritual, you can put your faith in your higher power. Friends, family, counselors, and others going through similar challenges are also good sources of support.
- Create a plan for the future, and approach it one step at a time.
- Forgive yourself. Everyone makes mistakes, and an important part of releasing guilt is forgiving.
Vicki: Jennifer, thank you for providing us with some very useful information, as well as practical suggestions, during this interview. For those of you interested in learning more, I Care: A Handbook For Care Partners Of People With Dementia, 2014 Winner of the 23rd Annual National Mature Media Awards, is available directly from Brush Development Co.
