Dick Bassett and Janae Phipps are shown in photo taken in happier days. Bassett, 67, now suffers from early-onset Alzheimer's disease. Phipps says she has benefited considerably from a dementia support group called HOPE.
Looking back, Janae Phipps now sees the signs that she missed when her companion of 36 years, Dick Bassett, began to suffer from early-onset Alzheimer’s disease.
It was on Sept. 11, 2014, when Bassett, now 67, told her that he felt something happen in his brain, something electrical, something disconcerting. Phipps remembers Bassett saying, “I felt something zap in my head like an electrical shock.”
A visit to the VA hospital the next day revealed a bit of scar tissue in his brain. It's unknown whether the scar tissue resulted from a seizure or vice versa. But in any case, the disease rapidly progressed.
From that first seizure until January 2017 when Bassett moved to The Ha.m.pton at Salmon Creek, Phipps cared for Bassett at their Ridgefield home.
“I was a basket case,” said Phipps.”I did not know how to help Dick.”
Phipps recalls changes in Bassett's behavior during the year prior to the seizure — personality changes, anger, frustration and confusion.
Bassett continued to play tennis and drive a car into mid-2016. But by late 2016, things changed.
“He followed me throughout the house,”said Phipps. “I couldn't talk on the phone or go to the bathroom.”
“Sometimes he thought I was someone else in the home,” said Phipps. “He would say (to me), 'You need to leave. Janae will be home any minute. Do you have a car?' I would answer that my car was in the garage and he would say, 'No, that's Janae's car.'”
“There were times when he thought there were two Janaes,” said Phipps..
Phipps eventually invited friends to stop by when she needed to go out of the house — sort of a series of short-term caregivers.
“I would leave the house and a few minutes later a friend would knock on the door, ask for me, come in, suggest coffee, and talk to Dick about records and make small talk.”
Bassett had devoted several years to the collection of vinyl long-playing music records.
Phipps had a series of short-term caregivers. The “smoke and mirrors” system allowed Phipps to run errands, shop for groceries and take care of other matters.
Then a close friend suggested she look into a dementia support group called HOPE.
“I did not begin to learn about Alzheimer's, how to live with a person 24 hours a day, until I found HOPE,” said Phipps, who began attending weekly HOPE meetings in late 2015. “I was hit over the head with dementia reality when I attended that first meeting.”
Phipps learned that someone with dementia cannot be responsible.
“There is no rationality; you can't reason with dementia. I must change to be able to help him,” Phipps said she learned through HOPE.
Alzheimer's impacts all aspects of the brain and affects everyone differently, explained Phipps. “The brain affects bodily functions,” she said.
Even though Phipps visits Bassett on a regular basis, it's not really him, she says.
“He has been brutally murdered by incurable dementia, leaving only small pieces of his former self,” she said. “He can't express himself or carry on a conversation. He's in his own world. It's been a couple of years since I've seen Dick.”
“Placing Dick in a care center was the hardest thing I've ever had to do,” she said.
Organization
formed in 2007
Jan Malone, current president of HOPE, said that Chaplain Dick Merrick had been visiting dementia patients and saw the need for caregiver support. In 2007, he created Breath of Fresh Air, the predecessor organization to HOPE.
“It was evident that there was a lot of need,” said Malone.
Malone's early involvement stemmed from the caregiving she did for her mother who suffered from vascular dementia. Malone said she had been “turned off” when attending meetings of the Alzheimer's Association.
Within six months, Breath of Fresh Air split into two groups, and a year later into four. There are now seven groups of 6-20 people meeting weekly, and Malone has taken over the presidency. The na.m.e change occurred when the organization beca.m.e a recognized nonprofit.
“We can't cure dementia, we can't fix dementia, but we can be knowledgeable,” said Malone.
Each HOPE meeting includes a welcoming statement, a light story or joke and a 15-minute educational progra.m. or speaker. Then those attending are invited to share their experiences and offer solutions that they have found for daily tasks such as helping a loved one bathe. The weekly meetings are scheduled for 1 ½ or 2 hours long.
There are no dues or fees, and no paid staff, not even Malone. Printing and other expenses are paid for through fundraisers and donations.
Three locations where HOPE groups meet offer free respite care for loved ones while caregivers attend meetings. Caregivers face their own special problems, said Malone, noting that 63 percent of dementia caregivers die before the person they are caring, possibly due to the stresses of caregiving.
Respite care is also available from other sources. Area Agency on Aging and Disabilities of Southwest Washington, a government agency located in Hazel Dell, offers in-home care for a fee. CDM and Innovative Services offer care at their facilities.
A HOPE brochure says the group's mission is to provide advocacy, support and education to individuals caring for people with all types of dementia. The brochure offers suggestions on securing medications, storing firearms, removing locks from bathroom and bedroom doors, and more.
Malone said she endorses the “buddy system” where one HOPE attendee visits care facilities with another and “provides a different set of eyes” during the evaluation process.
Strangers quickly become part of a HOPE group, said Malone, and bond with other members. “The glue is there when you share such personal stories,” said Malone.
Each new person joining a HOPE meeting receives a handmade bag full of information. Volunteers sew the bags and straps. More women than men attend HOPE meetings possibly because women are more willing to seek help. Even when a loved one dies, the caregiver often continues to attend HOPE meetings.
Malone has written a book on her experiences with dementia caregiving. The book (My Na.m.e is Thelma, But I Don't Know Who I A.m., A.m.azon) includes the Global Deterioration Scale, the stages of dementia, and ideas on evaluating care facilities.
Malone said it has been hard to get the word out about HOPE. She leaves brochures at doctors' offices, clinics and care facilities, and the organization maintains a website. Plus Malone speaks at service clubs. Yet Phipps said doctors do not regularly suggest the support groups to patients.
Information about HOPE is available by calling 360-513-5754, and online at
HOPEdementiasupport.org
