Creating Moments of Joy Along the Alzheimer’s Journey

Romantic sweet senior couple relaxing decorating christmas treeWhat better time to discover more than 100 ways to bring more joy into your life and the lives of those with Alzheimer’s than during the Holiday Season! Give yourself the gift of this book.

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 traveling the Alzheimer’s journey with my husband, reading this book brought me joy and the hope that my husband and I can continue to experience joy together, even during his “Final Moments.”
I wish I could help you to feel some of that joy just by reading this blog, but as Jolene so wisely says on p. 268, “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.”

So, besides sharing a few of Jolene’s examples, I can only say, as Dakota Home Care CEO, Beverly Unrath, said to me, “I read the most wonderful book. You should read it!” So I did. I hope you will, too.
Another quote from Jolene: “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. Just pick a chapter that stands out to you. I wanted to read them all! Now I have favorites that I know I’ll return to again and again. Because every person with Alzheimer’s is different, you will have your own, but to give you a taste, here are one or two of my favorite insights from each section:

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 in their memory but they can’t pull them out. We can create a moment of joy for them if we know something from their past. 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.

Family Moments:
People Stop Visiting: Family and friends stop visiting for a variety of reasons. They might be scared of the diagnosis and their perception of what it means. They fear what the person will look like and how they will act. They don’t know what to say if they can’t ask questions about the recent past. They want to remember their friend, uncle, father the way he used to be.  Jolene gives an example of a letter one couple—the husband has Alzheimer’s—wrote to friends and family explaining “how to visit.” It’s full of great tips on how to make a visit enjoyable for both of them and the visitor. You could write one, too.

You’ve Got Mail: When my Dad’s short 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.

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 clever 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, it’s difficult to remember I am the only one who can 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 outlandish stories that they know aren’t true. Jolene reminds us that even though the facts are off, their feelings are real to them. “Please do not try to figure out their story—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 arguing with the person, 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.

Transitioning Moments:
What to Expect: This chapter consists mostly of 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 just three on the list that resonated with me:

  1. Expect everything to get lost. Hearing aids and glasses get lost….It’s a losing battle to replace them.
  2. Expect who you’re caring for to walk out of a room completely naked. (My dad did this.)
  3. Expect that when you ask them, “What have you done this morning?” they will say “Nothing.”

Music Does Wonders: You might have read some interesting studies about music and memory. Jolene’s tips about music include, “Even if they can’t communicate, sing their favorite song.” This worked for me in an amazing way recently. A 94-year-old friend of mine was dying and hadn’t said anything for more than 24 hours. I held her hand and talked about my memories of leading the music in church with her. She opened her eyes and said clearly, “I miss the hymns.” I began singing hymns to her and she would join in with a line or two. Then she lamented, “I can’t sing.” I said, “You’re singing, Margaret! You’re singing.” We sang together for 10-15 minutes until she got too tired and drifted back into her semiconscious state. What a moment of joy that was for both of us!

Enhanced Moments:
Quality Connections: For someone with Alzheimer’s, a quality connection is not asking a question. “A quality connection means to 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 their memories back. It takes thirty seconds.”
“Help Me”: If you have children, you remember them wanting to help, but hesitating to let them do a certain task. You probably thought up safer things they could do that made them feel like they were helping. Jolene says, “People need to be needed, no matter what their age or their physical or mental ability.” Then she gives several ideas that your loved one could do to “help.” I laughed when she said, “You can offer the same projects every day because they don’t remember they did it the day before.”

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. With all my heart, I know 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.” I got the same advice from Dad’s hospice nurse. On his last day with us, we held the phone to his ear and had family from out of town say their goodbyes. When everyone had their turn, I said right in his ear, “You can go now.” He said loud and clear, “So, you made that decision for me!” He was “still in there.” Those were the last words he said. He waited until I went home to go, though.

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.”

If you need more time and help to create moments of joy with your loved one, call Dakota Home Care, expert Alzheimer’s caregivers, at (701) 663-5373 to arrange for an in-home consultation. Our Alzheimer’s caregivers understand all the stages of Alzheimer’s disease and how to create moments of joy with your loved one, even if you aren’t there.
Everyone at Dakota Home Care wishes you a joyous Holiday Season!

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