Sirena Rodriguez has watched her mom, Mary Martinez, change over the past six-plus years under the weight of Pick’s disease, a form of dementia that causes personality and emotional changes as well as aphasia, which is a loss of the ability to understand or express speech.
While Sirena knows there is no remedy for her mom, she is equally focused on her 81-year-old dad, Paul, who is struggling under the weight of his responsibility as caregiver.
“It’s tough for my dad,” said Sirena. “He didn’t want to send her (Mary) away to a care facility. His three daughters pushed him when we saw that he couldn’t help mom the way she needed.
Sirena sees the irony in her parents’ situation. Her dad remains very sharp intellectually, but the toll of caregiving has left him in fragile physical health. In contrast, her 79-year-old mom is doing very well physically but can no longer communicate with family. In fact, she no longer recognizes her husband or daughters, and is unable to express her own needs or sensation of pain.
“My dad is very lonely without mom,” said Sirena. “He misses her companionship and feels guilty for not continuing to care for her at home, but now that she’s in a care facility, at least he doesn’t have the day-to-day stress.”
The family’s experience with dementia is not limited to one individual. Mother Mary’s sister, Sally, is living with Alzheimer’s, although her communication skills remain strong.
“My mom can only communicate through facial expression,” said Sirena, “She doesn’t recognize emotion, but she always enjoyed fashion and she still checks out my outfits.”
The experiences Sirena and her sisters have had in caring for both of their parents have led them to become active participants in the Alzheimer’s Association of Colorado’s annual Walk to End Alzheimer’s, which raises funds to support programs and services offered at no charge to the public, as well as research for a cure.
She also has participated in a support group through the Association, and hopes to repeat the process with her entire family. And the sisters have learned several valuable lessons that they hope other families can learn from as they deal with dementia in a loved one:
- Become knowledgeable about healthcare options for loved ones. Sirena’s family benefited from respite care in her parents’ home.
- Explore financial and legal planning to ensure that family members are not caught by surprise in the challenges of arranging care and legal transitions.
- Click here to learn about care options as well as financial/legal planning at the Alzheimer’s Association’s Community Resource Finder.
- Become familiar with Medicare and what it will and will not cover, since the cost of long-term care can be quite high.
- Explore support groups. To learn more about Alzheimer’s Association of Colorado support groups, click here. Also, call the Association’s 24/7 Helpline at 800-272-3900 with any questions about resources for caregivers Alzheimer’s disease or dementia.