ORIGINALLY WRITTEN JANET HAMOUS
Your mother, known for her faithful remembrance of special occasions, missed both your birthday and your anniversary this year.
The last time you phoned her, she asked you three times how your job was going and she had trouble remembering your husband’s name.
She told you that the cable TV repairman had stolen her favorite wristwatch.
When you stop by to visit, you are surprised to see her still in her bathrobe at 4 p.m. and her normally coiffed hair disheveled. Several opened boxes of cereal sit on the kitchen counter. You open the refrigerator and find it almost bare. In the butter dish sits her wristwatch.
Your father died last year and you know your mom is lonely. Is her unusual behavior due to depression? Or could this be Alzheimer’s disease?
The Alzheimer’s Association offers a checklist of 10 common symptoms of Alzheimer’s disease and recommends a professional evaluation if there are several areas of concern.
“Some very preliminary things I see that might be a problem are recall-not recalling names or appointment dates-and word find trouble,” said Connie Suderman, case manager with North Central Flint Hills Area Agency on Aging.
“Sometimes people notice it and sometimes they have to get a lot worse before a spouse or a caregiver will know,” she added. “Because people cover it really well sometimes.”
When people see what may be initial signs of dementia, they often call Suderman.
“I take referrals from neighbors, pastors, concerned people, senior centers, home health agencies, doctors-whoever has a concern,” she said. “I will contact those people, and one of the things we would discuss would be cognitive issues.
“What I would do is encourage them to go to their physician if they are not seeing a doctor on a regular basis, or I would try to get a hold of family to assist them in locating a physician and making sure that their medications, for example, aren’t causing some cognitive deficits.”
Suderman said many times the individual is aware there is a problem.
“To be honest with you, they usually know,” she said. “But a lot of times those people will try very hard to be socially appropriate and to not have to reveal it. Because it’s scary.”
She said a thorough medical workup is necessary to rule out other diseases and conditions that can cause dementia.
Assessing care needs
Suderman also evaluates what kind of care or assistance a person diagnosed with dementia may need.
“Some people have loved ones who help and some people don’t,” she said. “It just is a matter of assessing of what their support system looks like first of all. Do they see their doctor? What does their nutritional status look like?
“And most often it’s just a decision as to whether they can function at home alone and then, at a later point, function at home at all-with services or without. Every situation is individual and their circumstances might be a bit different.”
Suderman said she uses a formal assessment tool provided through the Kansas Department on Aging to assess in-home service needs.
“One of the things that really becomes an issue is if it’s hard to remember to take their medication,” she said. “There are health implications for people in the community if they’re having trouble taking certain meds, particularly if they’re for significant chronic problems like diabetes or heart disease.”
She also assesses eating habits.
“They may not be eating properly, because they don’t want to cook -their energy is low-or they don’t recall whether they’ve eaten or not.”
She said remembering to turn off the stove is another common problem.
“They might be burning their food because they are forgetting it’s there,” she said. “That’s an issue of safety.”
Suderman assists people in receiving services through state and federal programs. Anyone who is functionally and financially eligible can be placed on a waiting list for services, she said.
“I am very linked with those funding sources, and I use the assessment tool to help them and to refer them to other resources if need be,” she said. “It is a little complicated, and that’s why case management is nice. I can help them through the system a little bit.”
Care outside the home
Care of a person with Alzheimer’s often rests on the shoulders of the spouse or other family members.
“I do a lot of assessing of people who want to remain in their home versus go to the nursing home to determine whether community services can meet that need or whether safety is so much of an issue that it really can’t,” Suderman said.
Deciding when it’s time to get outside support for a loved one suffering with dementia is a tough call. Although the disease gets progressively worse over time, the course of the disease and the rate of decline vary widely.
“It’s so individual,” said Pam Ratzlaff, coordinator of HCMC’s Special Care Unit. “I think supportive family members who are outside looking in sometimes are more aware of when the caregiver is really wearing down and their health is being compromised as well.”
Ratzlaff said there is no “right” time for placing the person with Alzheimer’s disease in an adult-care facility.
“Care giving is really very dependent on the individual and their own strength,” she said. “It also depends on how the resident is doing and what his abilities are. If it comes to where they’re just physically unable to meet the needs of getting them up and down and transferring, then it’s definitely time to consider some support elsewhere.”
She said feelings of physical and emotional exhaustion often signal the need for a change.
A booklet prepared by the Kansas Department on Aging says, “Dementia caregivers spend significantly more time on care giving than people caring for those with other types of illnesses. This type of care giving also has a greater impact in terms of employment complications, caregiver strain, mental and physical health problems, leisure time and family conflict.”
Ratzlaff said: “When it gets to the point where it feels overwhelming and it is difficult for the caregiver to maintain their own normal sense of lifestyle, then it’s maybe time to consider either a day care program to give them the rest and relief they need or to talk to someone about permanent long term care.”
Both national and local resources are available to families dealing with Alzheimer’s disease.
In addition to Flint Hills Area Agency on Aging and numerous care providers in the county, the Marion County Department for Elderly also serves as a link between area residents and resources and services.
“What we provide is a lot of information and referral,” said Noreen Weems, director of the Marion County Department for Elderly. “We try to plug people into services. We really do have a lot of resources at our fingertips.”
One resource is a booklet prepared by the Kansas Department on Aging titled “A Guide for Alzheimer’s disease and Related Disorders.”
“In a moment, a memory is born. In an instant, it can be lost,” Weems reads from the cover of the booklet. “That is quite a saying.”
Weems said she would like to see more support for Alzheimer’s patients and their caregivers.
“We did at one time have an Alzheimer’s support group,” she said. “We did a caregivers workshop last fall and I see such a need to do that annually.
“Another need we have for our county is to have respite care giving workshops where people are trained to help out a friend, neighbor, or loved one and give the caregiver a break. We find many caregivers just get stressed out.”