When Sandra White, a former news anchor and journalist, talks about her father, her eyes light up. “He was a jazz musician, self-taught, had his own band,” she says proudly. “He used to play ‘You Are So Beautiful’ to my mother. He was always teaching and spreading love.”
So when White learned that her father had Alzheimer’s disease, she found the transformation from loved one to caregiver only natural. But it’s a process she couldn’t have survived, she says, without a support network that included the Alzheimer’s Assocation of Western New York.
Today, White is happy to share her story, reaching out to others affected by Alzheimer’s so they can benefit from the wisdom of her experience.
Learn how to swim.
Understanding the needs of an Alzheimer’s patient isn’t easy; it starts with the difficult process of explaining to them what is happening. Depending on the progression of the illness, the patient may be aware that something is wrong but not understand what it is.
“My father was still loving and kind, but just not quite himself; he was more aware that maybe there was something else that he needed to know, and he didn’t know why he was here and why he was going through this suffering,” says White. “There’s that hesitation to tell them. It’s your choice. They’re your loved ones. You have to know their personality and what they can handle.
“I told my father that he had bad nerves. He had had a stroke years ago and he didn’t remember that, and I reminded him.” Most important, says White, “Create an environment around them that’s loving and nurturing, even if they don’t know what the heck is going on.”
Sometimes that confusion becomes fear. “Caregivers need to be aware that people with Alzheimer’s often feel that someone is going to hurt them, because their environment has changed,” says White.
To help caregivers understand how to rebuild trust, she offers the analogy of the patient as someone trying to stay afloat alone in an ocean. “You have to swim out there to them and then tread water around them. That’s what I did. You learn how to tread water, lay back and swim with them. It’s not your daily thing but that’s what you have to do.”
Make friends with the past.
At the agonizing core of Alzheimer’s is the loved one’s feeling of a shared history lost, of being alone in one’s memories. White, a storyteller by trade, set about documenting the life of her father through interviews with his friends and former coworkers as well as other family members. She found evidence of a life fully lived.
“You’d hate to see that no one knew your loved one was here,” she says. “But as I started digging, I found out everyone knew he was here. I was the one who didn’t know all he had done, and the lives he had touched. That journey has been very exciting.”
For White, who has been very active in local historic preservation efforts and has an interest in urban planning, turning her passion for journalism and history onto her personal struggle was a life-affirming process.
“When you have a loved one going through this difficulty your eyes are going to open up to so many things,” she says. “You start asking questions. Who was that person? What touched their lives? I encourage people to really get to know their loved ones and hear their stories.”
“In the course of caregiving, I looked like a bag lady most times,” White laughs. “My loved ones used to look at me and wonder what was wrong with me. I was cranky; I was waking up in the same clothes as the day before.”
Caregivers are often on call 24/7, which leaves little physical or emotional energy for their own needs. It’s vital to know when to ask for help.
“I had a support system. It’s so important. You cannot do this alone,” White says. She found that support system in the Alzheimer’s Association, Western New York Chapter, and specifically in its executive director, Leilani Joven Pelletier.
With her positive, warm energy and easy laughter, Pelletier is in her element as an advocate and friend to caregivers, and is a wealth of information for families of Alzheimer’s patients.
“When you’re so mired in the day-to-day of caring for someone, your perspective changes,” she says. “What ends up happening is they feel that responsibility; they don’t think of it as a burden. They don’t even think of themselves as caregivers. They see themselves as daughters, sons, spouses. They’re doing the job that they promised they’d do.
“So a lot of people don’t ask for help. Friends and family may say, ‘If there’s anything I can do for you let me know,’ but they don’t ask for anything, not because they’re being martyrs but because they can’t pull it together enough to figure out what they need.”
Armed with the right support network, White says, she managed to become the person her father needed her to be. “I was able to care for my father in a way that the old me had not been able to,” she says. “The old person had to be transformed, and the new person is a part of me forever. I have been changed, I’ve been touched and I have a heart that’s bigger.”
If you’re not the primary caregiver, know what you can do to help.
“When I came home to take care of my father, my mother said, ‘I need to sleep.’ I started staying there and I realized he was up and often more alive, more alert at night. My mother was 80 at the time — she was exhausted,” White recalls.
Allowing a caregiver a few hours to rest is often the best gift of all. “My dad would be up at three or four every morning and I’d be half-asleep making him a peanut butter and jelly sandwich; I’d have jumped through the sky for him,” she says. “Have compassion for caregivers. Take them out for dinner. Get their nails done. Their needs are the least understood because they don’t know them themselves.”
Though there is usually one primary caretaker, all family members can find ways to help.
“Not everyone could do what I did — many had children — but they all did what they could,” says White. She tells families, “Even if you have problems with the loved one who is the caretaker, give them a break. You’ll find that the love that you give to that person spreads through the whole family.”
Become an expert.
Knowledge is power, especially when it comes to a long-term illness. White recommends using the resources of the Alzheimer’s Assocation to get informed as soon as you learn that a loved one is afflicted.
“It’s so important to try to learn what this disease is about, so you don’t go into a state of denial when you see your loved one,” she says. The Alzheimer’s Assocation, which has had a chapter in the area for 32 years, serves Western New York families affected by dementia.
The most commonly asked question about Alzheimer’s, Pelletier says, is how it differs from dementia. She explains, “Dementia is a generic umbrella term that says someone’s having trouble thinking or using their judgement. It’s a symptom, like pain.
“Pain tells you something hurts but it doesn’t tell you why. Dementia tells you something’s wrong in the brain but it doesn’t tell you what. The most common reason people get it is because they have Alzheimer’s.”
Dementia can also be caused by other afflictions, such as a stroke or Parkinson’s disease, and it’s possible to have dementia with multiple causes.
“If you don’t get a full neurological complete workup with a whole battery of tests, you don’t know which disease it is. And it’s important for families to find out so they can figure out if there’s a family history of an illness.”
Learn what works.
Once armed with the facts, White says, “I tried my best to become as much of a medical expert as I could” and worked with doctors to find medications to improve her father’s quality of life. She also learned, over time, small ways to ease his suffering.
“I used to put earbuds on my father’s ears and put on Coltrane,” she says. “I’d say, ‘Is this what you want to hear?’ He’d just smile and say ‘Mm-hmm.’ He lived longer than doctors said they expected; I attribute that to a loving environment.”
Sometimes, White says, the caretaking process will be overwhelming, and that’s normal. “Tears are good because they show that you’re human and your soul is alive,” White says. “Sometimes I’d walk to the movie theatre downtown and I’d be sitting there at the movie theater by myself. But I got two or three hours to recharge. And I’d leave and be ready to go.
“I also did a lot of gardening. In the midst of my father’s decline, I watched this garden grow and develop, and it helped. There are parts of the journey, like that, that I can take with me the rest of my life.”
To learn more about Alzheimer’s and the WNY Alzheimer’s Assocation visit alz.org/wny or call their 24-hour hotline at 800-272-3900.
Citation: Burke, Julia. “Life Lessons from an Alzheimer’s Caregiver.” Forever Young – Western New York. Forever Young – Western New York, 1 Oct. 2012. Web. 01 Oct. 2012. http://foreveryoungwny.com/news/2012/oct/01/life-lessons-alzheimers-caregiver