Caring for Alzheimer's patients a rewarding but difficult reality

10850869_10154949355015075_930982411_n The term “care,” as a noun, is defined as “the provision of what is necessary for the health, welfare, maintenance and protection of someone or something,” according to the Dictionary. “Care,” as a verb, is to “feel concern or interest; attach importance to something.”

What makes the term “care” so impactful, whether it’s a noun or a verb? Shandeen Lundgren has spent the last six years of her life dedicated to caregiving for people in need of help, care and a little compassion. After spending almost 40 years working in the in-store management field, Lundgren’s parents fell ill with cancer.

Lundgren took on the challenge of taking care of them throughout the struggles and pain. In the sadness of her mother and father’s death, she found her calling.

“My parents allowed me to take care of them,” Lundgren said. “After that, I realized I liked the companionship and how a friendly smile might be all they need.”

One of her caretaking specialities allows her to take care of patients who face Alzheimer’s disease. Alzheimer’s is quickly grasped as a disease that makes people forget things, simple things or lifetime events, but it is so much more. It is currently the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention. It’s a disease that begins with simple forgetfulness, but as the clock ticks on, victims are torn from their memory and sanity, without any second chances.

“It’s a very sad disease, to watch it take away someone’s mental capabilities of doing simple things,” Lundgren said.

November was National Alzheimer’s Caregiver Awareness month to recognize and thank the dedication and sincerity Alzheimer’s caregivers give to their patient’s every day.

Home Instead Care is a non-profit organization that works with patients who need at-home care, whether it be once a week or a few times a week, to keep people in their homes as long as possible. It also helps patients whose families no longer can take care of them. Lundgren works with Duluth Home Instead Care to put her gift to work.

Lundgren described her typical day as an Alzheimer caregiver. As the disease progresses and brain functions decline, patients need help with tasks such as getting ready in the morning, washing, taking medications and getting ready for bed at night. Patients also need to be kept busy by taking walks, exercising or carrying on a conversation.

One game Lundgren said she uses with her patients is to pick out a picture, maybe one in the room. She lays the picture in front of them and asks what they notice about the picture -- what they like about it and what is happening. After they examine the picture, the patients realize they’ve told a story about the picture.

But as time goes on, things become only more difficult.

“It’s a gradual progressive disease. Like one client I have been with for six months,” Lundgren said. “You see the change of the willingness to do things over time, like go for a walk or the willingness to take a shower. Those things begin to start scaring them, like the water spraying down from the shower or a pattern in the carpet might cause fear because they see it as a raised thing, where we don’t. They see things differently in their mind.”

With Alzheimer’s patients, there are many difficulties and hard times, not only for the patient, but for the families and caregivers. Lundgren said that for the patient, it is more than just forgetting memories or simple everyday tasks. Patients have to endure the pain of knowing they are basically losing their minds and capabilities. It makes them feel frustrated and confused.

“From a caregiver perspective, it’s very hard on the family,” she said. “It’s hard for, say, the spouse to admit their spouse has dementia and face the fact that in the future, they may not remember who you are.”

Can you begin to imagine waking up one day, and the memories of a precious family vacation to Hawaii are gone? You see your son standing in front of you, but you have no idea who he is.

“One lady I was with in her early stages of Alzheimer’s, she was cognitive enough to know what was happening to her, and at that stage it is really hard to see because their cognitive, they know it’s happening, and it’s scary,” Lundgren said. “Sometimes that stage is the worst. It was hard with her to watch her be so scared, knowing she had no control over what was happening to her. With there being no cure or nothing to help it get better, and now she is past the cognitive stage.”

As time progresses with this thief of a disease, Lundgren emphasized one main thing in being a caregiver: patience. She expressed how being a caregiver requires a lot of patience and knowledge of the disease. We are already vulnerable human beings, and humans experiencing Alzheimer’s almost go back to the stage of being vulnerable children because they don’t realize what they are doing or saying. Patients might get angry and lash out without even realizing it is wrong.

“The patients might go back to when they were a child and ask where their mother is, when she died years ago, or they forget that maybe their spouse passed away,” Lundgren said. “You learn to help them because their reality is their reality. They truly believe their mother is still here and wonder why isn’t she picking me up?

“You have to work those realities. You don’t want to tell them, ‘Your mom died five years ago,’ because then they have to relive that tragic event of their lives. So you want to work with them in the reality they are in and to calm down. Maybe tell them their mom is shopping because that is what they know right then. You have to guide them away from some thoughts that cause them anxiety.”

As difficult times tick away for patients and families of Alzheimer’s disease, the compassion, care, humanity, generosity and patience of caregivers like Lundgren make each day a little better and embrace the true expression of living each day in the moment.

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