Creating Moments of Joy Along the Alzheimer's Journey
What better time than now to discover more than 100 ways to bring more joy into your life and the lives of those you love and care for who are in any stage of Alzheimer’s Disease or dementia. I enthusiastically recommend this book whenever I get the chance. This is my chance to recommend it to you.
International speaker and author, Jolene Brackey, makes a powerful, personal, and touching case that there can be many moments of joy for those with Alzheimer’s disease, and for both professional and family caregivers. As a wife and caregiver who traveled the Alzheimer’s journey with my husband, reading this book brought me joy and some of the know-how I needed to help me and my husband continue to experience joy together up to his “Final Moments.”
I wish you could feel some of that joy just by reading this blog, but as Jolene so wisely says, “You have learned a lot by simply reading this book. You’re going to want to tell your brother because, ‘He should…’ You want to tell your mom because, ‘She should…’ You want to tell other caregivers because, ‘They should…’ Don’t go back and ‘should’ on people. Recognize that each person is doing the best they can with the information they have.”
In addition to sharing a few of Jolene’s examples, I can only say what a good friend said to me, “I read the most wonderful book. You should read it!” I did, and I hope you will, too.
Perfectly Wonderful Moments
Jolene begins by explaining, “With short-term memory loss, life is made up of moments. There are not perfectly wonderful days, there are perfectly wonderful moments—moments that put a smile on their face and a twinkle in their eye. Five minutes later, the person will have forgotten what was said and done; the feeling, however, lingers on.”
The book is divided into six sections that don’t have to be read in sequence. Start with a chapter that stands out to you. Here are some of my favorite insights from each section:
1. Defining Moments
Understanding the Person: When we think about something from our childhood that makes us feel good, we are usually thinking about a moment. People with dementia have these moments of joy in their memory but they can’t pull them out. We can trigger a memory of that moment, not by asking questions, but by saying something about it. You might unearth a story that you hear over and over again, but it will give the person telling it joy every time.
2. Family Moments
You’ve Got Mail:When my dad’sshort term memory was almost gone and the half of my family that lived out of town bemoaned the fact that they couldn’t visit, I urged them to write to or call Dad. Only one granddaughter did. She printed her weekly email to her family and mailed it to Dad with a personal note on the bottom. When it came, I read it to him. He was thrilled, even though he asked every time “Now who is this?” Maybe other members of my family would have done the same if they’d read Jolene’s reminder of how much joy each of us feels in the moment when we get a letter or a package in the mail.
3. Challenging Moments
Stop Correcting Them: The person with Alzheimer’s doesn’t know they’re doing anything wrong until we correct them. For example, they might wear the same thing every day, sleep in a room that isn’t theirs, or wear a sweater that doesn’t belong to them. Jolene gives several workarounds for what to do instead of pointing out their unacceptable behavior. She explains, “You want to correct the person in the hopes that they will get better. This is a rightful wish, but it’s an illusion. This is a disease that progresses….No matter how many times you correct them, do they get better? Do they change? No.” I know from experience that, in a challenging moment with my husband, it was difficult to remember I was the only one who could change. She suggests, “If you correct them, you just laugh at yourself and think, ‘There I go again.’”
The Facts Are All Off: Anyone caring for or visiting someone with Alzheimer’s has heard stories that they know aren’t true. Jolene reminds us that even though the facts are off, the feelings are real to them. “The best thing we can do is to respond to those feelings.” A common example is, “My family never comes to see me. They don’t love me.” Rather than saying they are wrong, respond, “I’m going to call them and tell them to stop by.” You don’t have to call, but you’ve made the person feel that you understand.
4. Transitioning Moments:
What to Expect: This chapter is mostly a list of what to expect from people with Alzheimer’s and why. The bottom line is to “expect the unexpected. Suffering happens when you expect something different than what is.” Here are three expectations from the list that resonated with me:
- Expect everything to get lost. Hearing aids and glasses get lost….It’s a losing battle to replace them.
- Expect who you’re caring for to walk out of a room completely naked. (My dad did this.)
- Expect that when you ask them, “What have you done this morning?” they will say, “Nothing.”
5. Enhanced Moments:
Quality Connections: For someone with Alzheimer’s, a quality connection is not being asked a question they probably can’t answer. “[It] means that you stop, get down to their eye level, touch their knee, make eye contact and compliment…. the person on an attribute that they like about themselves….Replace ‘you were…’ with ‘You are…’ Remind them who they are and give them back a memory. It takes 30 seconds.”
“Help Me”: If you have children, you remember them wanting to help, but hesitating to let them do a certain task. Jolene says, “People need to be needed, no matter what their age or their physical or mental ability.” Then she gives several ideas for what your loved one could do to“help.” I smiled when she said, “You can offer the same projects every day because they don’t remember they did it the day before.”
6. Final Moments:
Late Stages: Jolene’s gives this poignant assurance, “Just because someone doesn’t physically or verbally respond, it doesn’t mean they don’t feel your presence. They are still in there. So continue talking to them, even if they don’t talk back. Read to them touch their cheek, brush their hair, lotion their feet, and imagine you are simply wrapping them up with your love.”
Jolene’s profound closing message is, “People with Alzheimer’s can teach us how to live. [With them] we have an opportunity to be present in each moment, to neither dwell in the past nor worry about the future.” That advice and this this book can change your life, even after your loved one is gone.