The Caregiver Honor Roll pays homage to family caregivers, like Dawn Revere.
Dawn cares for her husband, Jeff, in their Glendale, Arizona, home. Jeff was diagnosed with early onset Alzheimer's disease in 2009, when he was 55 years old and Dawn was 48. Jeff and Dawn have two grown sons, one of whom lives with them and helps with Jeff's care. The other son lives in the Midwest but calls nearly every day, supporting his mom and dad emotionally with kind words and by just listening.
Prior to being stricken with Alzheimer's disease, Jeff was a surveyor. When he started having problems at work, he took a leave of absence and received long-term disability coverage through his company. Once diagnosed, he was also able to receive Social Security disability income.
Dawn works as an assistant to a charter school superintendent. Her employer has been flexible and supportive, allowing her to work from home several mornings each week. "This has helped me tremendously," she says. "Jeff doesn't yet need a lot of care, but I can make sure he's settled in before I go to work."
Biggest caregiving challenges
Dawn's biggest challenge has been dealing with the symptoms of Alzheimer's disease and the effect they've had on her husband. "It's very hard to see him suffer through this," she says. "I think the worst part is the pain I feel in my heart every day, watching him decline." For example, Jeff used to pay the family's bills, but now he can't even write his name. He doesn't know how old he is, or how long he and Dawn have been married.
While Jeff has always been an active person and continues to run and work out, some days he just sits on the couch in the dark. Other days, he will be out and about and get lost, which is also known as "wandering." Once he left the house without his GPS, and Dawn had to call the police for help finding him. "That was an awful day," she says. "We now have his GPS on his key chain."
Jeff also struggles with communication and is unable to say what he wants a lot of the time. "It's like a game of charades trying to find out what he's saying," Dawn says. "I don't want to just pacify him when he's talking to me -- I truly want to know what's on his mind. But it's hard."
Communicating with others has also been challenging for Dawn. She avoids those who are ignorant about Alzheimer's or insensitive to the realities of the disease -- and she's become more isolated as a result. "I've cut a lot of communication with my friends because they just don't get it," she says. "They say things like, 'My husband forgets his birthday too!' They don't understand what we're going through."
When Jeff was initially diagnosed, Dawn's first reaction was to learn as much as she could about his condition. "I just wanted more, more, more information," she says. "Getting info allows me to brace myself. Information is my armor. By knowing what's coming, I can prepare my heart."
Nonetheless, Dawn faces daily worry and stress. "I go to work and wonder if he's OK and has remembered to eat lunch," she says. "There is this constant knot in my chest. I can understand why caregivers get sick. It's very stressful."
However, Dawn says that when she comes home, "I always make sure I have a smile on my face, and I try hard not to let him know how much this is affecting me. It's not my disease; it's his. He should only be focusing on keeping himself healthy, not worrying about me."
Dawn became a member of the Caring.com community in May 2009, after a friend introduced her to the site. "I really can't remember the day when I signed up," she says. "But now it seems it's always been a part of my life."
Dawn visits Caring.com to educate and prepare herself as a caregiver. "I get the weekly e-mails, and I use the site as a strong point of reference for a variety of topics, such as what to do when this or that happens, how to protect our assets, the finances around Medicare," she says. "It's been an extremely helpful resource that's close at hand."
While gathering caregiving information has been Dawn's primary focus, she's also visited Caring.com to light a Caring Candle in her husband's honor.
Tips for other caregivers
Learn as much as you can about your loved one's condition and caregiving. "You can't go into this blind," she says. "It would overwhelm you if you didn't know about the disease and what's involved." Dawn suggests reading all you can, whether through books or websites such as Caring.com.
Don't beat up on yourself when you have a bad day. Alzheimer's caregiving is such an emotional drain that no one can go through it without losing it once in a while.
Always tell your loved one that you love him or her. It will make you feel better even if your loved one doesn't respond.
Try not to dwell on the "can'ts" and try to focus on the "cans" (for example, he can still tell me he loves me, he can still do chores around the house). This is easier said than done, but it helps.
Every night, try to find at least three things you're grateful for. Don't go to bed dwelling on the negative.
Look into clinical trials, if you're comfortable with the idea. "Jeff is currently in one," Dawn says, "and at least we feel like we're trying everything we can."
Favorite song, book, or movie shared with loved one
Jeff still tells Dawn that he loves her and holds her hand when they sit down on the couch together. One of Dawn's favorite songs is Alan Jackson's "Remember When." "Since Jeff's diagnosis I do lots of reminiscing, both with myself and with him," she says. "I don't know if it helps or not, but I like to remind him about our life together, the love we shared. I think it's important for him to know that I'll hold his memories for him."
We hope you'll share your supportive comments with Dawn below, or send her a virtual hug or prayer via her Caring.com profile.