For the first 41 years of their marriage, Harold and Barb Arnold didn’t send out a Christmas letter to friends and family. Not about vacations. Not about the births or graduations of their six children, 11 grandchildren or six great-grandchildren.
It wasn’t until the holiday season of 2016 that something happened to change their lives that they felt required a special message. So when their friends and family members opened the Arnolds’ holiday card in 2016, they were in for a surprise. Not only was there a holiday letter enclosed, but the couple shared the news that Barb was recently diagnosed with Alzheimer’s disease.
With his wife’s permission, Harold penned the letter in her voice, introducing “the new Barb,” and describing a few of the ways the disease was affecting her. It concluded with their honest assessment: “(We) continue to have fun and enjoy life every day. We still value you as our friend.”
The candid letter elicited the kind of warm response you would hope for, with the vast majority of recipients calling to express their support and offer to help.
Families facing an Alzheimer’s diagnosis, like the Arnolds, struggle with how to tell their friends and family the news. The couple believes that many of their inner circle suspected the diagnosis might be coming. The toughest was telling some of the most distant relatives who haven’t been around frequently enough to observe the subtle changes in Barb’s memory.
While some family members may be a bit in denial, one of the reactions the letter generated was welcome visits and promises of visits from children, grandchildren and great-grandchildren.
The solution creates another problem
Ironically, for the Arnolds the toughest part of the process of publicly acknowledging Barb’s diagnosis was what to do with the outpouring of genuine care and support.
“We did the first step right (sending the Christmas letter), but we didn’t know what to do with all the offers to help,” said Harold.
“We’re not used to receiving help,” Barb added, noting that they are more likely to offer support to others than seek it in return.
Channeling good intentions
The challenge for both the recipient of sincere offers of help and those delivering them is how to make them meaningful. Barb notes that she responds to the anticipated question of “How are you feeling” with her standard response: “I feel fine,” emphatically adding: “And I am!”
But the couple doesn’t want to dismiss those offers of support because they realize that there may be a time when they will be needed more.
So this year, the couple is going to revisit Barb’s Alzheimer’s diagnosis in their second annual Christmas letter, this time offering some specific examples of what people can do, starting with the idea that friends and family can contribute photos and memories that they have with and of the Arnolds back to them for inclusion in a new scrapbook.
They also will share some of the tips from the Alzheimer’s Association of Colorado on what well-intentioned loved ones can do to help those with a diagnosis. Some of those tips include:
- Educate yourself about Alzheimer’s disease.
- Stay in touch.
- Be patient.
- Offer a shoulder to lean on.
- Offer to help the family with its to-do list.
- Volunteer with the Alzheimer’s Association.
The tipsheet also offers a few ideas on understanding the diagnosis from the perspective of the person with it, including:
- “I’m still the same person I was before my diagnosis.”
- “My independence is important to me. Ask me what I’m still comfortable doing and what I may need help with.”
- “I can still engage in meaningful conversation. Talk directly to me if you want to know how I am.”
- “Don’t pull away. It’s OK if you don’t know what to do or say. Your friendship and support are important to me.”
Barb offered a simple example that hit right at the heart of the issue. Since her diagnosis, she has given up driving, so when Harold is busy and she wants to get around town, she’s stranded.
“So if I want to buy him a surprise present, I have to ask him for the money, and then ask him to take me to the store,” she laughed.
An Alzheimer’s diagnosis changes everything, but the Arnolds are adapting. Harold is learning how to cook, with mixed results. And he’s trying to pick up more of the household chores that Barb routinely handled.
The other big adjustment is that the couple is planning their inaugural venture into social media. They intend to enlist one of their grandchildren to set up a Facebook page for them so they can share the photos and memories their friends and family contribute, and to stay in closer contact with their distant relatives.
How to help those with an Alzheimer’s diagnosis
To learn more about how you can support loved ones with an Alzheimer’s or dementia diagnosis, call the Alzheimer’s Association’s confidential and free Helpline at 800-272-3900. It is staffed by trained professional counselors who can offer counsel and direction to local programs and classes, all at no charge, as well as resources for legal and lifestyle planning. You can also visit us online at alz.org/co.