Grief is often associated with death, says Paul Rado, 71, of La Plata County. But as he cares for his wife Jackie, 77, who has Alzheimer’s disease, he’s experiencing another kind of grief.
“Ambiguous grief,” he said, is the sorrow felt for someone who’s alive but no longer the same.
Paul said he grieves for his old life with Jackie, who now needs constant care. They married in 1983 and have continued strong for 42 years. But they can’t reminisce about their life together like they used to because Jackie doesn’t remember it.
Jackie was diagnosed with Alzheimer’s in 2022, Paul said, although her symptoms began two years earlier during the COVID-19 pandemic.
“You feel like they’re gone, but they’re still here,” he said. “You’re looking at a totally different person than (who) you’ve been living with all these years, and she can’t express anything because her memory is trashed.”
In this series
Sunday: How one family is dealing with an Alzheimer’s diagnosis and preparing for what may come.
Today: Caregivers in La Plata County help patients and families cope with exhaustion and frustrations. But they need help, too.
Friday: The Durango Dementia Coalition connects the dots between rural services and resources patients are otherwise left to discover on their own.
Paul said he can’t recall exactly when he began attending meetings held by the Durango Dementia Caregiver Support Group at the Durango-La Plata County Senior Center, but they have been mightily helpful as he navigates life as a caregiver.
Caring for a loved one with dementia becomes a demanding affair as the patient loses their memory, personality and independence, said Sheila Lee, co-facilitator of the support group. The group gives caregivers the knowledge and comradeship to carry on.
Knowledge is an especially powerful tool when it comes to taking care of someone with Alzheimer’s or another form of dementia, she said.
The Durango Dementia Caregiver Support Group meets the first, third and fifth Wednesday of the month at the Durango-La Plata County Senior Center. Between 12 and 18 people usually attend, Lee said.
The meetings are often an emotional roller coaster. Participants share their joys, pains and frustrations – fleeting moments of love or lucidity; financial pains and family disagreements involving attorneys; and the toll dementia takes on the people inflicted and those around them.
Group members at a Dec. 17 meeting laughed with one participant who shared anecdotes of uplifting little moments between him and his wife, who has dementia.
The man said his wife didn’t recognize him as they lay in bed one evening. Despite her damaged memory, her sense of humor was perfectly intact – she told him to remind her to ask for his number before he left in the morning.
He brought in a spare clock designed for people with dementia, offering it to whoever might get use out of it. The clock had a digital interface that, he said, displays the time, time of day (morning, afternoon, night), and the day of the week in large, easy-to-read text and numbers. Another participant eagerly accepted the clock.
Paul Rado said the support group is helpful because he gets to listen to other people’s stories, explain problems he’s having with his wife – her memory is fading and she can’t walk well, for example – and other group members share what has worked for them.
“It’s nice to have other people that have these same problems,” he said.
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Lee said a patient’s change in behavior or unusual mannerisms are particularly vexing for caregivers, who already find themselves exhausted.
“The person’s personality has changed a great deal, and communication skills are much, much different than they have been prior to the diagnosis,” she said.
The support group teaches caregivers how to communicate with simpler sentences, asking fewer questions and reducing the number of choices their loved one must answer.
“You get sort of the ‘deer in the headlights’ when you ask a question, so you make more of a statement and let the person build on it,” Lee said.
Tucked into a small room at the back of the Senior Center’s cafeteria is a plethora of books, pamphlets and brochures about dementia and resources.
“’The 36-Hour Day’ is exceptional,” Lee said.
Written by Nancy L. Mace and Peter V. Rabins, “The 36-Hour Day” is a leading guidebook that has been in print for more than 40 years, according to Johns Hopkins University Press.
Lee said the book, which is on its eighth edition, isn’t a book one would read cover to cover. It’s more of a manual, and its index is useful for quickly finding subjects such as insomnia, behaviors, bathing struggles and other particular challenges.
She said the book’s name is a reference to the number of hours in the day it would take for a caregiver to do all he or she has to do, because a caregiver is dealing with his or her own life in addition to another person’s life.
Paul said his wife hates bathing and always needs to be talked into taking a bath or a shower.
“That’s something that you and I do by ourselves, but she needs help with that,” he said. “We have a lady that comes over to give her a shower, but she doesn’t want to do it, so you gotta talk her into it. Oh boy. She does not want to take a shower.”
La Plata County resident Al Jason, who was diagnosed with Alzheimer’s last year, said his wife Meme has posted notes around the house reminding him to make sure the freezer door is closed and the stove burners are off.
Paul said he has a similar setup in his and Jackie’s trailer in the Animas Valley.
“You need little helpful hints,” he said.
The Durango Dementia Caregiver Support Group’s doors are open to caregivers with family members in any stage of dementia, Lee said.
“One problem is that a lot of people don’t realize that this resource is available,” she said.
Lee’s mother was diagnosed with Alzheimer’s in 1997. She said she didn’t know the first thing about dementia or Alzheimer’s. Her first instinct was to call the Alzheimer’s Association – something that doesn’t occur to most people.
The Alzheimer’s Association used to have an office in Durango, although that closed during COVID-19 and never reopened, she said. A hotline is still available by phone and she recommends it. The Alzheimer’s Association provides first, second, third and following steps for someone whose loved one has been diagnosed with the disease.
Paul said Jackie used to read a lot and used to be talkative. Now, she hardly ever talks. She doesn’t read because she mixes words up when she tries. She gets stuck on a single paragraph.
The change in her personality has been a scary experience, for herself and for Paul, her husband said.
“Some people get violent. Jackie hasn’t gotten violent yet, but I’m sure she will as things progress,” he said.
Twiddle muffs for comfort
Twiddle muffs – hand warmers with textures, objects and sensory features such as buttons and ribbons – are prized for their ability to provide stimulation to people with dementia, including Alzheimer’s disease and Parkinson’s disease.
Cindy Scholfield began knitting twiddle muffs in early 2025 and has made at least 60 to be given for free to dementia patients around La Plata County. They are available in both wool and acrylic materials.
“This calming activity gives one the opportunity to fidget any restlessness and anxiety away,” a flyer says. “The muff shape is also a great hand warmer for those with cold hands or circulation issues.”
Scholfield said she stitches her twiddle muffs with No. 7 or No. 8 circular needles with approximately 60 stitches per muff.
“A twiddle muff is a thoughtful and effective way to offer support and comfort to a loved one or patient, enriching their daily experience with simple, yet powerful sensory engagement,” the flyer says.
Lee said witnessing the gradual transformation of someone’s personality doesn’t have to be scary. It’s alarming upon diagnosis, but the more one educates themselves about dementia, the easier their time adapting to it will be.
When dealing with her mother’s diagnosis, she said going to trainings and learning about the disease gave her the knowledge she needed to better communicate with her mother and meet her needs.
“Most people do not reach out and learn this. So it’s bewildering to me to wonder what goes on under that roof,” she said. “If you were tossed into something with no background, no education – how in the world would you handle it?”
The Support Group’s resources are available in English and Spanish, and include:
- Additional information about the Durango Dementia Caregiver Support Group.
- Contact information for the Alzheimer’s Association.
- Medical alert cards caregivers can give out that explain a patient’s condition in simple language: “The person with me is memory impaired and may require a few extra moments. Your understanding is appreciated.”
A particularly valuable resource, Lee said, is “Planning Your Journey: A Care Planning Tool for People with Dementia, Families, and Caregivers,” produced by the Durango Dementia Coalition with support from Mercy Hospital.
The 35-page booklet was initiated by Pat Demarest, founder of the Durango Dementia Coalition, and includes a comprehensive list of local, state and federal resources.
It addresses subjects such as how to live with dementia; how to navigate legal, medical and financial planning; and how to approach and talk with medical care providers, among other subjects.
cburney@durangoherald.com
About this series
Dementia is a disease that cripples the mind by eroding cognitive functions such as memory, language and social skills. Over time, it warps a person’s personality and takes away his or her independence, impacting one’s ability to perform even simple daily tasks.
Alzheimer’s disease alone – the most common type of dementia – affects about 1,100 people in La Plata County and more than 7 million Americans across the country.
Dementia imposes significant physical and financial burdens on families across La Plata County. Though there is no cure for dementia of any kind, patients and their caregivers can live more comfortably with medication and certain lifestyle changes.
In this series, we visit those afflicted, tell stories of family members who endure the long goodbye, and examine the efforts of caregivers and support groups as they shepherd patients and loved ones into the fog.
