There is rarely a good news side to a diagnosis of Alzheimer’s disease or other forms of dementia, but one Denver family has found that, with a little help (or a lot) from their friends, the journey can be smoother.
Julie’s husband, Scott, 70, began displaying symptoms of dementia several years ago. While Scott is retired, Julie remains active as a business executive, so his diagnosis brought multiple changes to their relationship and household.
As Scott’s dementia progresses, the couple no longer share household responsibilities. In addition to her career, which occasionally requires travel, Julie found herself managing every aspect of their lives from finances, social engagements and travel to medical appointments, shopping, pet care and home maintenance.
As the responsibilities pile up, Julie’s sleep and exercise have declined, and her emotional outlook has suffered. “It has become increasingly difficult to have meaningful conversations with Scott,” she said, “and it is no longer possible to plan for the future – both of which are depressing.”
Friends step up
Julie and Scott have a core group of long-term friends and family members who recognize the challenges the couple face. Two decades-long friends from Julie’s and Scott’s business careers, Jane and Susan, each had been working independently with Julie to provide support.
Over the past year, it became clear that a different approach was needed.
“As Scott’s needs increased, Susan and I agreed that it would be much more helpful for us to coordinate our efforts so that Julie would know what to expect from us,” said Jane. “And we would know what to expect from each other.”
A dream team
The collaborative effort by friends to care for one of their number is a unique and fortunate occurrence, according to Deb Wells, a volunteer support group facilitator for the Alzheimer’s Association of Colorado, who works with several members of the team.
“Not only are they doing what every primary spouse caregiver dreams of, they are also interested in learning about the disease and gaining support ideas for the whole team,” said Wells. “I’ve personally never seen a situation like this before.”
A business approach to caregiving
The trio share a business background, and they realize that collaboration is a function of an effective business organization.
“Therefore, we each recognize when a problem needs to be solved, and we know how to organize and plan with attention to detail,” said Susan.
That approach gave birth to a weekly schedule so that each of the care partners would know how and when they would help, what expectations would be, and what the commitments would be.
“This weekly schedule allows us to help Julie and Scott while also establishing the time available to manage our own lives,” said Susan.
Many hands make for light(er) work
Utilizing their business acumen, the trio set up a spreadsheet that outlined each person’s weekly role, responsibility and schedule for Scott’s care, and this schedule includes an extended group of family and friends.
- Susan – A former business associate of Scott for many years before her own retirement, Susan wears a number of hats, including making medical appointments for Scott, driving him to those appointments and helping him run errands, and investigating social activities at adult day care centers where he could participate. Susan goes to their home three days each week to help Scott during the day, ensuring he has eaten breakfast and lunch, and helping care for the family’s three dogs. She accompanies him to weekly exercise programs, reviews with him his daily “to-do” chore list, and helps him when he needs clarity on how to complete a task. She also prepares one meal each week for the family.
- Jane – A retiree who lives in Douglas County, comes to their home once per week to spend time with Scott and supports him in much the same way as Susan. She coordinates schedules with service people (landscaping, equipment repair, etc.) and meets with workmen. She also prepares one meal per week.
- Elaine (Scott’s cousin) – She engages with Scott virtually every day for an early morning walk with the dogs or an evening spin class. She can provide meals or take Scott to her home from time to time for an outing, as needed.
- Jody – A long-time family friend who works full-time, house sits with the dogs when Julie and Scott travel, and makes herself available on weekends if Julie has an activity or commitment that doesn’t involve Scott.
- Kim and Dean – These long-time friends step in when Julie needs to travel for work by having Scott stay with them. They also make themselves available on weekends if Julie has an activity or commitment that doesn’t involve Scott.
At the end of each week, Susan reviews Julie’s schedule for the coming week, incorporates Scott’s caregiving needs, and drafts the next week’s schedule.
“This is a typical business model for project management,” said Jane. “We determine the needs, determine the resources required, create a plan, implement the plan, and make adjustments as necessary in order for the plan to be a success.”
A plan for successful caregiving
Thus far, the teamwork approach to caring for Scott, and taking some of the burden off Julie so she can continue her career to support the family, has been successful. The team plans to “play it by ear and adjust as necessary,” said Julie. “If Scott’s illness progresses beyond what we are capable of handling, then long-term care in an assisted living or memory care residence may be necessary.”
For her part, Julie is extremely grateful for the support of her friends and family.
“I can’t imagine how anyone does this alone,” she said.
As for her caregiving teammates, they are thankful for the opportunity to help.
“We are just glad we can help Julie manage their lives by helping with the things that Scott used to be able to do on his own, but can no longer do, and by contributing to the caregiving for Scott,” said Susan.
“We have learned so much from the Alzheimer’s Association and Deb Wells’ support group,” added Jane. “I personally am so much more confident as a caregiver as a result of everything I’ve learned.”
To learn more about the programs, services and support groups of the Alzheimer’s Association offered at no charge to families, go to alz.org
or call the Association’s free 24/7 Helpline at 800-272-3900.
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.