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Welcome to the SevenPonds.com blog – a community-driven extension of SevenPonds.com! I hope you find comfort and community in the resources and stories featured here. I’m always happy to hear from readers and can be reached at firstname.lastname@example.org.
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Page Hodel creates beautiful hearts as a tribute to enduring love
It’s an honor for SevenPonds to share with our readers the story of the Monday Hearts for Madalene project, a true account of the power of love in the midst of death.The project’s origins take us to 2005: the moment Page Hodel encountered Madalene Rodriguez and fell “instantly, dizzyingly in love with her.” The couple’s first meeting was electric, and Page felt inspired to do something unique for the woman who captured her heart. So, she began leaving handmade hearts – made from flowers, leaves, and other materials – on Madalene’s doorstep. The hearts became a ritual, and they were there to greet Madalene as she left for work every Monday.
“To start her week with a visual reminder of our beautiful love.” Page Hodel
Just seven months later, Madalene was diagnosed with ovarian cancer and passed away on June 20th, 2006. But Page’s love for her hasn’t ceased, and she continues to make a heart for her every Monday in celebration of her life.
If you would like, you can also receive Page’s “Monday Hearts for Madalene” by emailing her at email@example.com with “subscribe” written as the subject. Images of the hearts can also be purchased in her beautifully compiled book, Monday Hearts for Madelene. Please also visit her website and Facebook page. A portion of all sales will go to the Women’s Cancer Resource Center in Oakland, California (www.wcrc.org). See more Monday Hearts for Madalene here.
Life doesn’t stop because someone in the family is terminally ill
One of the difficult realities that people living with a terminal illness must deal with is the fact that life goes on much as it did before. Despite the “new normals” of doctor’s appointments and lab tests and physical changes associated with the illness, the need to maintain some semblance of an orderly existence remains. Children still need tending to. Someone needs to pack their lunches and check their homework and tuck them in at night. Laundry still needs folding, meals need to be prepared and bills still need to be paid.
For some people, this sameness of routine is comforting. Emily, who has end-stage renal disease and has been on the waiting list for a kidney transplant for two years, says taking care of her four children keeps her “grounded.” “If it weren’t for the kids, I’d spend my whole day worrying about the future and feeling sorry for myself,” she says. “Sure, they give me grief sometimes. But they’re my lifeline,” she adds.
But not everyone copes as well with the demands of home and family when they are seriously ill. Dan and Janet, for example, are struggling to maintain some degree of normalcy in the face of Dan’s cancer diagnosis six months ago.
“Life wasn’t exactly perfect before,” Janet admits. “We’ve had some financial problems, and dealing with two teenaged kids has been challenging, to say the least. And Dan and I usually disagree about the best way to deal with them when they act up,” she adds. “So we argue quite a bit.”
Now, the strain of Dan’s illness has sent the family into a tailspin, Janet explains. Her youngest son, Andy, is skipping school, missing curfews and acting out in ways that are “not at all like him,” Janet says. “He’s a good kid. And watching him fall apart like this is killing me. He’s failing everything; he’s sullen and withdrawn. And all Dan does is yell at him. And that, of course, only makes things worse.”
“I know Dan doesn’t feel good and he wishes he could get back to work,” Janet adds wearily. “And he’s scared, and Dan doesn’t ‘do’ scared very well. But Andy doesn’t even want to be around him anymore.“
“I’m losing my husband and I’m losing my son,” Janet says as her eyes fill with tears. “I don’t know what to do.”
As is so often the case with families who were struggling with child rearing, financial or marital issues before a life-limiting illness struck, both Dan and Janet feel as if their lives are spinning out of control. With Dan unable to work, financial pressures are mounting. They worry that they’ll have no choice but to declare bankruptcy as the medical bills pile up. And while Andy’s behavior is not at all unusual for a teenage boy in distress, neither Janet nor Dan has the emotional wherewithal to help him right now. Their daughter, Julie, appears to be “holding it together,” Janet says. But she worries about her emotional state too.
Life-limiting illnesses don’t just happen to individuals. Certainly, the person who is ill is most directly impacted and deserving of a great deal of support. But a terminal diagnosis creates shockwaves throughout the entire family. It can be especially hard on children, who may feel guilty, abandoned and afraid.
Nor are there any easy answers to easing the distress of patients and their loved ones. Communication is essential. But for many reasons, families are often unable to have open conversations about what’s happening in their lives. And as tension and distress increase, it typically becomes harder and harder to reach out for help.
But reaching out is of paramount importance, not only for the person who is ill but for those who live alongside them and share in their pain. No one and no family can weather this kind of storm alone. Resources exist, and they can help. But you need to take the first step.
Since I last spoke with them, Janet and Dan and the kids are seeing a family therapist who specializes in working with people who are seriously ill. Dan has also joined a support group, and talking with other people who are dealing with the same kinds of issues he’s facing has helped him “a lot,” he says.
“I see now that Andy has been struggling with the idea of losing his dad,” Dan explains. “Before I joined the group, I was so angry and scared I couldn’t see anyone’s pain but my own. It seems crazy now, but I kept thinking, ‘You’re not the one with cancer, kid. I am!’ Wow! How selfish was that?”
Dan and Janet are doing better now. Things are still tense, Janet freely admits. But they feel less out of control and more grounded today than they have in a long time. And the whole family is grateful for that small measure of peace.
Researchers are using a sniff test to identify the disease
What if you could detect the early stages of Alzheimer’s using only your nose? A group of researchers is developing a new odor test that they think could help doctors identify patients who have the disease.
In two recent studies, researchers discovered that people who have trouble identifying common odors, like licorice or coffee, are more likely to have Alzheimer’s or other memory problems.
They studied two separate groups of people over the age of 60 and asked them to identify common smells. Each participant was given a set of scratch and sniff cards that contained different odors, such as cinnamon, chocolate or raspberry. Those who were able to correctly identify the scents were less likely to have or develop memory problems, whereas those who couldn’t identify the scents were more likely to develop Alzheimer’s or dementia later in life.
The Columbia University researchers decided to study the relationship between odors and Alzheimer’s after noticing that many Alzheimer’s patients complained that their favorite foods no longer taste the same. Doctors suspected that the patients’ sense of smell might be to blame.
Smell affects the taste of food in two ways. First, certain chemicals in the food produce a unique aroma, and that aroma is detected in the olfactory region (located in the nasal cavity and back of the mouth). If you lose your sense of smell, you also lose the ability to distinguish between different tastes. You can still tell whether a food tastes salty or sweet. But you’re unable to tell the difference between an apple and a potato.
Second, the brain plays an essential role in the sense of taste and smell. The region of the brain responsible for identifying odors also happens to be the same region of the brain that Alzheimer’s impacts first. Patients in the early stages of the disease often experience a change in their sense of smell or taste as that region of the brain degenerates.
In theory, doctors could use a similar odor test on patients to detect whether their brains are processing smells correctly. Currently, tests for Alzheimer’s are prohibitively expensive for most patients. A PET scan that detects plaque on the brain costs thousands of dollars. The odor test would be far less expensive and could be done in a doctor’s office in only a few minutes.
More Research Still Needed
However, researchers warn that the test is far from foolproof. To start, other factors can impact a patient’s sense of smell. If the patient is a heavy smoker, has a stuffy nose or has a disease like Parkinson’s (which also impacts the odor detection centers of the brain), that could also affect their sense of smell.
Additionally, these two studies are relatively small. It’s still unclear how many Alzheimer’s patients experience a loss of their sense of smell as the disease progresses.
So far, doctors and researchers suspect that the odor test could be an adjunct to other behavioral tests already used to detect Alzheimer’s. Many doctors look for symptoms such as forgetfulness, sudden changes in mood, jumbled speech or restlessness. In the future, they might add a failed sniff test to their list of warning signs.
Researchers are making progress when it comes to identifying Alzheimer’s. However, they still don’t have a cure for the disease. For this reason, early diagnosis doesn’t always help patients. Until researchers find a cure for Alzheimer’s, the sniff test can only help patients and their families prepare before the disease progresses.