“How can the dead be truly dead when they still live in the souls of those who are left behind?”

- Carson McCullers
Jesse Jackson and his family visit Gandhi's grave as a memorial to his life

Credit: Wikimedia.org

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Monday Hearts for Madalene

Page Hodel creates beautiful hearts as a tribute to enduring love
Heart made of colorful candies

My love is as sweet as when we first met

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 page.hodel@gmail.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.

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Spinning Out of Control

Life doesn’t stop because someone in the family is terminally ill
Looking at night sky feeling out of control

Credit: meetup.com

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.”

Night sky shows moon shining on clouds, out of control

Credit: youtube.com

“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.

A beautiful sunrise helps out of control families feel less distressedBut 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.  

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“I sure will be glad when scientists discover a cure for ‘natural causes.”’

- Anonymous
Scientists in a lab

Credit: www.bchydro.com

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How Do Professionals Provide Support For Families of Organ Donors?

An interview with Nika Short who comforts families during trauma

Today SevenPonds speaks with Nika Short, who works for LifeCenter Northwest to provide support for the families of organ donors. Nika provides bereavement support for donor families and facilitates communication between donor families and organ recipients when someone decides they want to reach out.

Nika Short

Nika Short

Ellary: Hi Nika, thank you so much for being willing to speak with SevenPonds. Can you start by giving us a little background on yourself and how you started working with families of organ donors?

Nika: My background is in mental health. I have a masters degree in marriage and family therapy. I spent a year and a half working in community mental health, and I was experiencing a lot of institutional stress working in underfunded and poorly managed places. So I was casually looking around for another job. Then a friend who was working in this organ donation organization called LifeCenter Northwest reached out to me with the idea that it might be a good fit for me.

Organ donation is all federally mandated so there’s no competition for organs, and LifeCenter Northwest is the organ procurement organization for the Pacific Northwest. I had done some work with an organization providing emotional support and long-term bereavement care to people with HIV and AIDS. So I knew I liked working in the areas of end of life, grief and loss.

Ellary: What was the first job you had in organ donation support?

Nika: I was what’s called a donation and family advocate. I was working “on call” for seven days at a time and then off for seven days. During your seven days on you’re basically on deck to get called out to a hospital where there’s a potential organ donor. When you get called out you pack a bag and head off to the hospital where that potential donor is.

Once I got there I would talk to the family. If the donor was registered, I would talk to them about their loved one’s registry status. If the donor wasn’t registered, I would ask the family’s permission for organ donation. It was very much trauma-based counseling and support.

Ellary: That sounds intense. How was that job for you?

Nika: I loved it. It was very intense. People who are organ donors aren’t generally dying of natural causes — it’s a lot of suicides and overdoses and car accidents and other very traumatic end-of-life scenarios. There’s a lot of trauma. Most families of organ donors are still in shock at that moment, and I found that I really liked being there at that time and supporting them. Being on call with that schedule and being called in the middle of the night was hard to manage. I live in Seattle and we serve Washington, Montana, Alaska and Idaho. So I could get a call at two o’clock in the morning telling me I needed to get on a plane to Alaska in two hours.

plane flying for organ donation

Credit: publicdomain.com

Ellary: How much time would you generally spend with the families of organ donors?

Nika: Assuming the families said yes to donation or their loved one was registered, I would stay with them from that initial conversation through the time that their loved one went to the operating room for their organ recovery surgery. That could be anywhere from…I think my shortest case was eight hours…to five days. So I would stay at a hotel close to the hospital to be with the family as much or as little as they needed.

Ellary: So you were sort of on call for the family as well?

Nika: Yes. So if they freaked out in the middle of the night and said it needed to be done right then, I’d go to the hospital and try to walk them through it. I was essentially the communication point for the family about the donation process, sharing with them what to expect and helping them say goodbye while they had these extra days with their loved one. We would do a lot of memory-making things like hand prints on a quilt or other end-of-life care rituals.

Ellary: Did you find a lot of ambivalence amongst the family members about organ donation?

Nika: It varied so much. Sometimes families were instantly excited about donation and get comfort from it right away, knowing that their loved one was going to save people’s lives. Other times families were very angry that I’d even come to talk to them. And there was everything in between. Sometimes there would be a donor who was registered, which is like writing a will. It’s legally binding through first person authorization. And the families wouldn’t want them to be a donor. Then I would have to go through the process of dealing with the family trying to revoke patient’s wishes, which was probably the worst scenario that I dealt with.

However, the only reason I could do that job and enjoy it was that most of the time it really did seem to bring comfort to people at a time when they needed that. It meant that this unavoidable loss could be turned into something positive. And then they have the potential to be in contact with recipients down the road.

Heart drawing with flowers for organ donor

Credit: pinterest.com

Ellary: So you were a donation and family advocate, and now you have a different role. What’s your position now?

Nika: Yes, I moved from an on-call position to the office, which is in Bellevue, Washington. I still do family support, but I do it after the donation happens. First, I follow up with the families of organ donors for at least 18 months after donations. I support them over the phone and send out bereavement materials and information about organs and tissues. We also put on events a couple times a year and invite families to celebrate organ donors and the families of organ donors and honor their lives. I help put on those events and support families through that as well.

Ellary: How often are you in contact with those families?

Nika: I call every organ and tissue donor family about three weeks after donation takes place. Then following that I’m in touch by mail and by phone as much as they want. So it totally varies from family to family. The other thing we do is facilitate communication between families of organ donors and organ recipients. The letters and the cards initially go through us. And then down the line, if families want to meet up or have more direct communication, we help them make that contact.

Ellary: Are there any relationships that have developed between the families of organ donors and recipients that have really stood out for you?

Nika: Well, there was one particular outlier situation where the heart recipient and the donor’s sister got married. They sometimes come and speak at presentations we give because it’s such a weird and amazing story. I was recently with a donor family that got to meet their lung recipient. It’s really cool to watch families meet the person who most likely wouldn’t be alive if their loved one hadn’t made that decision or family hadn’t made that decision. That’s the part when it can really bring comfort to the donor families.

Ellary: Thank you so much, Nika, for speaking with SevenPonds and for the work you do!

Nika: You’re welcome!

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A New Odor Test Could Detect the Early Stages of Alzheimer’s

Researchers are using a sniff test to identify the disease
A woman smells a scratch and sniff card that is used in the odor test to detect Alzheimer's and Parkinson's

Credit: Vimeo.com

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.

A close-up photo of a nose for odor test

Credit: Wikimedia.org

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.

A man holds herbs up to his nose to identify their scent

Credit: Pixabay.com

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.

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