A diagnosis of Alzheimer’s disease can be devastating. More than six million Americans are living with Alzheimer’s and almost two-thirds of these are women. According to Alzheimer's Association data, one in three seniors with Alzheimer’s or another dementia die from the disease, making it more deadly than breast cancer and prostate cancer combined.
But statistics don’t tell the whole story. When psychologist Dr. Michael S. Tobin found out that his beloved wife, Deborah, who is also a psychologist, was diagnosed with Alzheimer’s at age 69 in 2018, he was devastated.
“She has no family history, no genetic markers, and one month before her diagnosis, she climbed 19,000 feet,” Tobin tells Newsmax. In honor of his wife and to preserve her memory for their four children and 17 grandchildren, Tobin wrote a book, Riding the Edge, that chronicles their terrifying and grueling round-the-world bike trip taken in 1980, two years before they wed.
Tobin, 75, who now lives in Israel, said that he noticed telltale signs of his wife’s illness.
“She would binge watch TV, forget our grandchildren’s names, but for me the red flag was how she treated me,” he says. “She was too sweet and uncritical. She had always been sharp and well targeted!”
While he admits that the “loss of my brilliant and beautiful wife is terrible for everyone who loves her,” he adds that he continues to grow even though he can see his beloved slipping away on a daily basis.
Here are Tobin’s 10 tips for others going through the same situation:
- Embrace the axiom, “It is what it is,” without bitterness or anger.
- Help provide positive stimulation for your loved one. Listen to music together, travel if you can, engage in conversation even if the responses are limited.
- Make a distinction between the person and the disease. “For example, my wife wanted to go for a walk alone and I asked her if she had her GPS watch and phone,” Tobin recalls. “She responded, ‘Don’t you trust me?’ And I answered that I trusted her with every fiber of my being, but that I didn’t trust Alzheimer’s.”
- Don’t ask questions like, “Do you remember…?” And refrain from correcting someone with Alzheimer’s disease. This only shames them.
- Always treat your loved one with respect and dignity. “Alzheimer’s disease is an insidious illness that robs the sufferer of every aspect of who he or she is,” notes Tobin. “It is the caretaker’s job to focus on the sufferer’s humanity.”
- Remember that your role as a child or spouse has changed. You are now a caretaker, says the expert, and cannot expect your loved one to reciprocate. “It is the ultimate self-sacrifice to expect nothing in return from a relationship that was once so fulfilling.”
- Take care of yourself. As a caretaker, you need the support of friends and family. “For my mental health, it’s essential for me to maintain a regular routine of creative and professional activities,” says Tobin.
- Avail yourself of every support system. There are governmental and social institutions and agencies that can offer services to family members of Alzheimer and dementia patients. The Alzheimer’s Association can provide guidance.
- Get legal advice on how to set up a guardianship for your loved one. There are attorneys who specialize in this field.
- Do everything possible to keep your loved one in familiar surroundings. If you can, hire live-in help.
Finally, Tobin says, “Remember to laugh, to cry, to scream and always work on being loving. Your loved one deserves the best you can give to him or her.”
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