Blah, blah, blah, blah, You Have Cancer, blah, blah, blah…
That’s about all you hear when you receive a serious diagnosis. Then you start to research your condition, investigate treatment options and plan your future. You are so stressed, the last thing you want to think about is getting organized. Yet, getting organized can do a lot to reduce stress for both you and your family.
This post was inspired by Albuquerque professional organizer Hazel Thornton’s blog article Organizing to De-Stress a Major Illness. With her permission I have put my own spin on her original content, which can be viewed here.
Organizing Your Medical Records and Important Papers
When you face a major illness, you feel out of control. One way to feel more in control is to create a control binder. A control binder keeps all your medical records and important papers together and organized, so you can find what you are looking for when you need it. You may keep it at home, or take it with you to medical appointments.
Create a Control Binder. Get a 3-ring binder with tabs, create sections for research, second opinions, medical history, appointments, treatment plan, medications, contact information for health care professionals, and a miscellaneous section. Chances are your insurance and billing papers will fill an accordion file all by themselves, so establish secondary storage for overflow.
Organize your Important Papers. Before entering the hospital, you will be asked for copies of important papers, including advance directives (Living Will and Health Care Power of Attorney). LifeinCase® is an example of one personal document storage system, but there are numerous products with varying price points.
Organizing Your Support System
People with support systems are healthier and recover more easily from illness than those without them. Your support system can be a network of family, friends, neighbors, loved ones, colleagues and professionals. It can be uncomfortable to ask for help, but think about how you would feel if the tables were turned, if a friend or family member were ill. Give them the same opportunity to do for you what you would be happy to do for them. Not everyone can or wants to help the same way. Fortunately, there are many ways to help and a number of free online tools make it easier for everyone involved.
Appoint a communications director. Communicating the same information over and over to concerned friends and family can be emotionally and physically exhausting. This applies to both the person who is ill and to caregivers. Designate a trusted friend or family member to speak on your behalf. Caring Bridge is a free web service that connects people experiencing a health challenge with their family and friends. With CaringBridge, you can communicate en masse, rather than one by one, and they can stay in touch with you. MyLifeLine is a similar site. If several people need to be kept aware of your schedule, calendar sharing programs like Google Calendar may be useful.
Designate a support services manager. There are all kinds of services that may be helpful to you and your family. Do you need meals prepared? Your dog walked? Your car serviced? Food shopping? Someone to accompany you for medical treatment? Someone to take your mother-in-law to the doctor’s (which you ordinarily do)?
Your support manager can organize these activities, providing you and your family the support you need and offering friends many different ways they can help. Online tools such as Lotsa Helping Hands, Care Calendar, and Meal Train let friends know what you need help with and when, and enable them to schedule when they can help.
Your support system could help you with housekeeping chores, or you may qualify for Cleaning For a Reason, a program that provides monthly free house cleaning for cancer patients.
This is no time to worry about whether bills are being paid on time. If you are responsible for family finances, appoint a trusted advisor to take over this task or to help you accomplish them.
If you’ll be getting care out of town, hotel stays for you or family members can be expensive. Check to see if the medical center participates in a hosting program, like Hosts for Hospitals that provides patients and family members with free lodging.
Organizing Your Medications
Major illnesses usually involve major medications. A organizing system that works for 2 or 3 prescriptions may not work for a dozen or more, many of which change frequently. You’ll need a system to keep track of what you’ve got on hand, when they need to be renewed, what you need to take and when, and what you’ve already taken. Many kinds of daily and weekly pill dispensers are available. Since medications may make you drowsy or unable to focus, designating someone to help you manage your medications is a good idea.
Organizing Your Self
Stress and medications both impact memory, decision-making and the ability to focus. Keep a notebook handy to jot down reminders of calls you need to make, grocery lists, questions for doctors, etc. Create checklists to help with daily routines, doctor visits and health care treatment. Checklist.com offers hundreds of pre-made templates as well the option of creating your own.
Be kind to yourself. This is not the time to beat yourself up over all the things you are not doing. Give yourself permission to do less by asking for help and putting some things on “back burner.” This may mean relaxing some of your standards, and forgiving yourself for accomplishing less than you would like.
Nearly everyone knows someone who is in the midst of a health crisis. Maybe you are the person who is ill, or maybe you are the caregiver. Maybe it is your family that is going through this, or maybe it’s a friend or relative. Often, you wonder what can I do? Keep this post. Share this post. Offer to help when asked.
On a personal note. Myyoungest was 3 when I was diagnosed with cancer (he is now 27).After treatment,I remember sitting on our porch on a glorious spring day with him on my lap, thinking, “It doesn’t get any better than this moment, right now.” But soon I was back at work, in my old routine, and the lesson of what is truly important receded. Serious illness often brings with it a mindfulness of what really matters in life. Hold on to it. It is the one gift your illness is giving you.
Much of the information for this post was taken from a blog article by professional organizer Hazel Thornton at Organized for Life in Albuquerque, NM, home of The Clutter Flow Chart Collection — with these handy tools by your side, clutter will simply flow out of your home, office and life!
When I was seven, I was expelled from ballet class for lack of coordination and absence of rhythm. The ballet teacher wasn’t being cruel; she was being realistic.
I have never been able to dance. I watch other people dance and it seems so effortless. But when I try it myself, I look like Elaine in the infamous Seinfeld episode featured above. Actually, she dances better than I do.
Needless to say, I seldom dance in public. I don’t dance in private either. Even alone, I am so self-conscious of how poorly I dance that I can’t enjoy it. It’s not just dancing. I have difficulty clapping to a beat. If there is a gene for rhythm, clearly, I am missing it. Only my foot stomping seems unimpaired.
That is why I love walking. For decades, I have walked to music, first to cassette tapes and now to MP3 music. When I walk, my body seems to know how to keep time to the music, or maybe it doesn’t, but I am so wrapped up in the sensations of movement and music that I don’t care. I swing my arms wide, I raise them up high, I wave them in slow circles. I may look ridiculous, but I love it.
Did I mention that I also sing while I walk? My singing is almost as bad as my dancing. I never sing in public… unless I am walking. Then I sing loudly and gloriously. Sometimes I sing to the melody, sometimes I create harmony. Wearing headphones, I can’t hear the outside world, so I imagine they can’t hear me. This assumption is wrong, of course, as the many stares I receive bear witness. I have seen people smile at me. I have seen people pull their children closer as I pass, lest I be both dangerous and crazy. I don’t care. Nothing embarrasses me when I am walking.
I’ve given much thought recently to the concept of mindfulness, of being totally in the moment. I confess that I am not mindful in most aspects of life. Too frequently, I mentally multi-task, thinking of one thing even as I am doing something else. But not when I walk.
When I walk, I am totally in the moment. It is just me, the music and the sound. It is exhilarating to do something that you love mindfully. Though I am not religious, it is while I am walking that I feel most spiritual, most grateful to be alive.
So I am OK with my ballet teacher; I bear her no ill feeling. I may not experience the same joy as others do when I dance, but in my mind, I am always in tune and on beat when I walk. I walk joyfully. I walk exuberantly. I walk like no one is watching.
I am looking forward to my Girls High 45th reunion. Though I’ll be happy to see the girls with whom I was friends, that’s not what has enticed me to attend.
I knew very few of the 500+ girls in my class, but I have “met” many of them, so to speak, through a Facebook group we started 5 years ago, for our 40th reunion. I am attending the reunion because I want to meet them anew; they are really interesting women!
The Urban Dictionary describes “diamonds in the rough” as individuals who have hidden or exceptional characteristics and/or future potential, but who lack the final touches that would make them truly stand out in the crowd. That’s what I’ve decided we all were back then, in high school. We were diamonds in the rough.
At first glance, naturally occurring diamonds are quite ordinary. Their true beauty as jewels is only realized through the cutting and polishing process. That is what happened to us, I think, to my classmates and me.
Like diamonds that have been formed by years of immense pressure, we have been molded by our experiences and choices. We’ve matured, we’ve evolved, we’ve metamorphosed, and our facets have been exposed. Like diamonds, we have depth, we have strength, we are unique.
So that is why I am looking forward to my Girls High reunion. My hair will be cut and my nails will be done, but I won’t need any jewelry. I have acres of diamonds in my own backyard.
I never minded having implants. In fact, I considered myself quite lucky to live in an age when they were possible. But I minded not having them quite a bit.
Although implants last most people for decades, mine acted like tires — they needed to be replaced every 60k miles. So when I went in for my third set, I wasn’t worried. I knew the drill.
When I awoke from anesthesia, however, I had a surprise. The surgeon had found evidence of an infection. He started me on IV anti-biotics and had me admitted. I could get a new implant when the wound healed, in four months.
At first, I railed. Not because the implant had been removed. There was no option; I knew that. But I had no chance to mentally prepare for not having a breast. Although my actual mastectomies were 19 years earlier, I had immediate reconstruction. There was never a period when I was actually without a breast…until now. The next morning, the nurse removed my dressing, and I gazed at my left breast, where the implant had been.
My husband and I collect stones with words on them: love, health, family, even Beshert. Until recently, one was missing. We wondered how we had thought the collection complete without it, so we added a new stone: forgive.
Forgiveness is a central theme of the Jewish High Holidays. We ask God to forgive our sins, and we forgive those who have wronged us. What I don’t see emphasized is the need to forgive ourselves. Self forgiveness — the ability to say, “Who I was before doesn’t dictate who I will be in the future” — seems to be at the core of atonement.
I often think about a sentence I heard at a Weight Watchers meeting:
Your eating can be out of control at 10:00 and back in control at 10:05.
I love the insight this phrase suggests. It speaks to the hopeful promise that whatever your failings, you can forgive yourself, change and move on. Forgiving yourself, however, is harder than you might think.
I can list proudly many things I have done as a parent, but I have a list of shame as well. When my children were young, I was a yeller. Every parent yells at their kids at times, but I yelled a lot. One day, when my daughter was 12, we went to the grocery store.
What does it feel like to have dementia? In Where’s Maria, you experience first hand the confusion, anger and humiliation that people with dementia experience every day. Could this be your mom? Could it be you someday? I don’t remember much before this moment. I don’t recognize exactly where I am, although this recliner chair fits me like a glove. A female talk show host on the television is blathering on and on about some burst of insight, but it’s not Oprah and I don’t care for the knock-off, dime store psychology. The imitation is enough to make me shift in my seat and utter something in annoyance, more of a raspy croak than my usual gentle voice. I glance to my right and the grey-haired man next to me smiles with his eyes and a tangle of memories are suddenly swept out the corner and set adrift, cascading down in my mind as sparkly as water splashing off of sun soaked rocks. I feel a flood of joy and break into a face-splitting grin, which is quickly replaced by a concerned and furrowed brow. He looks surprised as he reaches for my forearm and gives me a gentle pat. “Are you getting Maria off the bus?” I ask him. He continues to pat my arm, turning his attention back to the Oprah Winfrey imposter. Typical. He never responds to anything I ask the first time. I guess I’ll have to go get her myself. I start to stand up, my knees grinding in revolt, and somebody rushes from the across the room and pushes me back down into my seat. This actually hurts a little. I must have strained my back carrying laundry up and down the stairs. I swear the amount of laundry these kids produce… This lady is pointing her finger at me. I’m told to stay . Like a dog-trainer scolding an errant beagle, she says it three times in escalating volume. Why is she so angry? The fourth time she is pushing down on my shoulders so hard that I have no choice but to push back. I realize that the bus is almost at the end of our street and, at this rate, no one will be there to meet her. Sunny must be home with her baby. I think Shane is at football practice with his son. Or maybe with his dad. I can’t keep them straight. Poor Maria won’t know what to do. The thought of her standing there, alone, looking lost and afraid, causes me to panic. I am quicker this time, and get to my feet before the lady can bully me any further. The grey-haired man also protests my actions, reaching for me from his recliner, which makes me really angry considering it’s his six-year-old daughter too. I shout something at Read more on “Where’s Maria?” »
I don’t understand mid-life orphans. They complain about caregiving responsibilities, and then, when their parents pass away, they lament about being orphans. They say they feel bereft, unmoored, devastated by life without parents. Don’t they realize how lucky they are? Having elderly parents is a privilege some of us never had.
If you’re a mid-life orphan, you’ve had the pleasure of parents for most of your adult life. You danced with your father at your wedding, you shared your joy with them when your children were born. You were able to show them the person you’ve become, and your children were able to know their grandparents. As they grew older, you were able to return the nurturing and love they gave you. Instead of mourning the loss of your parents, you should be glad for the time you had with them.
I became an orphan when I was young, and there are millions like me. My dad died when I was 7, and my mom, when I was 26. I grew up in the 50s and 60s, when hardly anyone was divorced. I didn’t know anyone besides me who didn’t have Read more on “The Last Time I Was Mothered” »
“The doctors talk to me like I’m an old man,” my uncle grumbled.
“Mike,” said my aunt. “You’re 92. You are an old man.” “I know,” he said, “but no one wants to be talked to like they’re an old man.”
The blog below is from guest blogger, Karen Austen.
About a year after I started volunteering at a skilled nursing home, I observed a set of new teenaged volunteers who came to help with a craft at the monthly meeting of the Red Hat Society. I heard several of the volunteers speak slowly and loudly, using a sing-song voice. In response, I saw many of the residents roll their eyes.
Unfortunately, I had flashbacks to when I also first started as a volunteer. I altered my speech inappropriately as well, hoping to be supportive but coming off as patronizing instead.
One of the most difficult aspects of packing is handling items that are already damaged or that have been previously repaired. These items are especially vulnerable to repeat damage. Sometimes, no matter how careful you are, these items break. Some clients are especially fragile, too. Like items that have been previously repaired, the stress of moving pushes them to the breaking point.
Some time ago, we worked with a couple moving to an active adult community. They asked for help getting their home ready for listing. At our initial meeting, the wife cried. I assumed it was from embarrassment at the home’s condition (which was exceptionally cluttered) or from anxiety that we would force her to throw things away. As we later learned, the real reason was more complex.
The couple had two grown sons, both of whom lived far away. A third son had died of a drug overdose many years ago and had been found in his bedroom by the father. After his son’s death, the father developed an alcohol problem, with which he had been struggling ever since. As we sorted, we came upon many items that had belonged to the deceased son. It was very difficult for both parents. The husband’s drinking increased during the sorting process, and we observed mounting tension between husband and wife. One day, we arrived at nine in the morning to find the husband already drunk and being taken to rehab. It was not the first time, his wife informed us. She doubted it would be the last.
Cars are more than transportation; they are metaphors for a thousand life lessons. Similarly, car brands denote meaning way beyond the attributes of the make and model. So if you were to pick the car brand that most represents who you are as a person, what would it be? Me, I think I’m a Honda Accord or a Subaru Forrestor. Perhaps I don’t see myself correctly; I might be an Audi. I am too much of a risk-taker to be a Volvo, and too practical to be a Porsche or a BMW.
I’ve often used the images people have of certain brands to convey concepts of value to clients. I might describe certain movers as a Kia (basic, dependable no-frills moving) or a Lexus (high quality, cuts-no-corners moving). People seem to get this approach. I use this tactic when discussing Moving Solutions charges, as well. “We’ve never tried to be the Kia of Senior Move Managers. We’re not the Lexus either. We’re more of a Honda or a Toyota.” I figure Lexus seems extravagant, too luxurious (and our charges are lower than many of our colleagues). I don’t want to suggest that we’re the lowest cost option either, because we’re not. If people want the Kia of Senior Move Managers, they will need to look elsewhere.
Cars lend themselves to other analogies as well. When discussing staging or preparing a home for sale, I ask, “What was the first thing you did when you decided to sell your car? You cleaned it inside and out. What about decals on the windows, cushions for your back, holders for your coffee cup, doo-dads hanging from your rear view mirror? You got rid of them. You did this because you knew that potential buyers were interested in the car, not in how you used the car. And when you removed those items in order to sell your car, you didn’t take it personally. It was business. Preparing your home for sale is the same thing. It’s not personal; it’s a business decision. After all, you’re not selling a used house. You’re selling a luxury, pre-owned domicile.” The car analogy here makes sense, it’s simple, people get it.
Recently, we’ve gone to the car metaphor again, with introduction of the Moving Solutions “Apartment Tune Up.” Your car gets a tune up every 5,000 miles to make sure it’s in good shape — what about your home or apartment? People accept that keeping a vehicle in good working order requires maintenance. A home or apartment is no different, and it’s not just your mechanical system; it’s your kitchen system, closet system, filing system and circulation system too. These are the ”systems” you use as you live in your home. Over time, things change, so your home systems need to be checked, tweaked, revised. Hence, the apartment tune-up.
I’m not sure what our next car metaphor will be. Right now, I am looking forward to the fall issue of Car and Driver. I need to read about road tests and new models to see if I will change my personal or corporate car brand. Perhaps I will evolve into a luxury hybrid. It sounds so right for an aging baby boomer.