As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:
Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.
The legal will should NOT be kept in a safe deposit box.
When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.
Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.
Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.
Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.
Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.
Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.
Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.
Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.
It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.
I don’t want to stop being a caregiver, but I think I’ve reached that point where I need respite.
I dreamt I murdered my mother last night.
It’s true that I’ve been feeling really exhausted lately. More than just physically tired, really exhausted in the depths of my soul. But I had no idea how in need of a rest I really was.
That’s how caregiving is. Not taking care of her isn’t an option, so I just keep going, no matter how exhausted I am. I have so many things I need to do for me, for us, but what can I do? She needs me more. She can’t be alone at all, so if there’s no one else to watch her I’m on duty.
I would never harm my mother. I love her dearly, beyond words.
But lately I’ve started thinking those things. One day, after her passing. I’ll do this. I’ll do that. One day, when I have free time again. One day, after this list of chores is finished. One day, after my mother is gone from this world.
And I guess I need to take care of myself before that day.
I don’t really want her to die. I want her to not be sick. I want her to be well again. I want us to get lunch, take her dogs for a walk in the park, giggle over what we might buy at the mall this weekend. I want her to not be dying.
Every day it feels like part of me is dying. Or already dead. One foot in front of the other, the next task on the list. What does she need? What will she need? I’ve forgotten myself.
I’ve forgotten myself for too long.
This is a wake up call.
Plenty of us are happy to see Obamacare go. It was too expensive, too confusing, and forced us to find new doctors.
You have a new chance to build something great. To save lives and help Americans secure their futures. Far too many people go bankrupt for their health.
Here’s what I’d like Trumpcare to include:
Insurance covered in-home care
How many of us have put careers on hold — or ended them early — because we can’t afford to pay out of pocket for home health aides? How many of us are forced to put loved ones in nursing homes because we can’t get the support we need to keep them at home?
Let’s change that. Help us keep caregivers at work and keep our loved ones at home.
Lower monthly premiums
The Affordable Care Act was not affordable for most of us! We need realistic health insurance costs — ones that actually reduce the amount we’re paying.
Lower copays and medication costs
American medication costs are higher than most of the world — are we subsidizing people in other countries? We need you to defend and protect Americans by making sure we pay for quality medications — not lining the pockets of conglomerates.
More tax credits for caregivers
We get refundable tax credits for childcare, why not eldercare?
Family caregivers should be able to deduct expenses like a business. Why aren’t more medical expenses deductible?
Employees get two weeks of paid vacation a year. Family caregivers don’t. Family caregivers are “on call” 24/7 — that’s a recipe for disaster. Everyone wins when we support family caregivers. Family caregivers are saving insurance companies and the government billions of dollars on nursing home care — we deserve two weeks off a year.
Social Security credits
I’m working hard every day as a caregiver. It’s insulting to think I’ll be denied Social Security benefits later. I’m working for the insurance companies — saving them from having to pay professionals for the care I’m providing. Shouldn’t they be paying to support my future?
Make programs nation wide
The help I get access to in one state is completely different from another state — or county, or town! Trying to make sense of it all is maddening. We need a single, nationwide system of caregiver support. Let me spend time taking care of my loved one, not wasting time with paperwork.
Samantha K. Thompson
The caregiving for my Uncle fell upon my mother. He did not want the family to provide hands-on care, so he made sure to have a live-in home health aide. The logistical and legal aspects of care and his estate were still significant.
After his passing, I went with my mother to help clear out the home he’d lived in for over 25 years.
His home was always meticulous, so it was odd to see things that didn’t belong.
The TV captures his personality so well.
Even retirement communities don’t design space for mobility devices.
You can die at home, but rarely in your own bed.
Meticulously kept records of his daily status.
My uncle was a very frugal man. These pencil stubs made us all laugh.
I suspect these ingredients are left from before my Aunt died…when I was in elementary school.
My mother won’t die.
I know, it’s awful to say. I don’t particularly want her to die, but it’s inevitable. She’s dying. She’s been dying. I can’t change that.
The problem is that she won’t let go of the dying part and move into the next phase.
Dying is an awful, awful process.
If you’ve ever seen someone who’s dying, you know what I mean.
There’s nothing I can do to really make her comfortable. Her body is worn out.
It’s bone against bone. Paper-thin skin. Everything aches.
She’s too weak to do anything.
But still she persists.
Yes, we both said our vows. But how many of us break them? Most of us, at one point or another.
Would he do this if our roles were reversed? Absolutely not. He’d be out of here in a minute.
He was cheating on me when his spine was crushed in a car accident. I have no idea where he was going that afternoon. He was supposed to be at work. It could have been a work meeting, a lunch time errand, whatever. But obviously I’m going to believe it was to meet her.
I had just found out, but hadn’t let him know I knew yet. I was deciding what to do; deciding if I should leave him or not.
And then I got the phone call.
It’s just assumed that I’ll take care of him. No one asked. I’m not sure how I would do it, though. I’m told it’ll take months for his disability to through. It’ll be years before we see any money from the lawsuit, if we ever get anything. I’m out on FMLA for now, but we can’t survive without an income. We were just barely getting by before.
I try not to think about the medical bills that are accumulating at this moment.
They keep talking about how they’ll be sending him home with me once he’s stable. As if I should be excited. I wasn’t sure if I wanted my husband home with me, but this isn’t really my husband. He’s like an ornery child. The personality changes could be temporary or permanent. He could regain the ability to do certain tasks on his own, depending on the severity of his TBI and how much his body heals.
This is not what I want for my life.
Before the accident my friends were telling me he didn’t deserve me. That I should pack up my bags and go. Or kick him out and fight him for the house in the divorce. Now those same friends are acting as if I should end my career and spend the rest of my days wiping his ass and fetching things for him. As if that was God’s plan for me.
Is it even an option to say no? How will I support us if I have to be here with him around the clock? Where will we live once we declare bankruptcy? What will happen to him if I leave.
It’s funny how once someone gets themselves smashed up they are made a saint. No one can say a bad thing about him now. But I will. He was a terrible husband.
And I don’t want to give up my life for his.
Every morning a paid caregiver comes to our home to help get my disabled husband up for the day. Although caregivers can change, one caregiver comes most often, and we love her. “What are you doing today?” she asked as she walked in the door.
“Nothing,” I answered. A puzzled expression came across her face. An experienced caregiver, she knows caregivers have never-ending task lists, and there’s always something to do. “I’ll do my caregiving tasks,” I continued, “and that’s it.”
The idea of a Nothing Day came to me during the holidays when I was rushing around. Although I average seven hours of sleep a night, I was still tired, and my arthritic hips were giving me trouble. Doing nothing—a day of rest—sounded very appealing. What might the day be like?
I wouldn’t go to the grocery store. I wouldn’t prepare future meals and freeze them. I wouldn’t do five loads of laundry. I wouldn’t dust or vacuum. I wouldn’t sort mail or pay bills. I wouldn’t do any heavy lifting. And I wouldn’t worry about our messy garage. This is my 19th year of caregiving, and I can tell when I need to slow down and rest for a while. Other caregivers have come to the same conclusion.
In The Caregiving Wife’s Handbook, Diana B. Denholm devotes a chapter to “dos” and “don’ts.” She asks caregivers to take a respite. “Do create a chance of pace for yourself one day or night a week,” she advises. Gail Sheehy, in her book, Passages in Caregiving, offers similar advice. “Whenever you feel overwhelmed by caregiving responsibilities, take time out to sit still and breathe calmly and deeply for at least ten minutes,” she writes.
I’ve followed her advice. Instead of deep breathing, I practice diaphragm breathing, a skill you may wish to learn and perfect.
My first Nothing Day was a huge success. Lunch was leftover bacon quiche and winter fruit salad from Christmas brunch. Dinner was French dip sandwiches and salad, leftover from a previous dinner. I did one load of laundry (my husband’s clothes) and left the rest for the another day. I read some Christmas magazines. I watched holiday programs on television. I sat in a rocking chair and meditated. I posted a video of me reading an excerpt from my affirmations book for caregivers on YouTube, something I’ve wanted to do for weeks. But the most beneficial thing I did was to take an hour and a half nap.
Of course a Nothing Day isn’t a blank day, and essential caregiving tasks still need to get done. Yet days like these force us to practice self-care. We can rest our bodies and our minds. In quiet, restful moments we rediscover ourselves and rekindle creativeness. A Nothing Day is really an everything day, time to think about life, assess our caregiving, and take credit for all we do.
From now on, I’m going schedule Nothing Days, and hope you will do the same. Write Nothing Day on your calendar now!
The lives of caregivers rarely rely on the calendar, they go on the schedule of the person we’re caring for!
Still, the beginning of a new year is a time for reflection. Here’s what our community is planning on doing this year…and what we’re hoping others will do to help us.
What are we hoping to do in 2017?
Find one week to do what I want to do when I want to do it
Take my caree out to more fun places
Help my caree to be stronger and more independent
Continue to just be…and be thankful for each day
Have more patience
Find time to be creative and make my art
Create and maintain healthy boundaries
Make peace with my caree’s illness
Be more active now that I am no longer a caregiver
What do we hope for all caregivers in 2017?
Lower insurance copays and lower medication costs
Better hospital discharge planning
Refundable tax credits for caregivers, like child care credits
Support from Medicaid and Medicare for in-home care
Family caregiver training
Regular respite resources covered by insurance
Social Security contributions for time spent as a caregiver
Additional in-home care aid hours covered by insurance
More volunteer respite resources
Tax deductions for mileage to and from medical appointments
Meals delivered for disabled and ill carees who are not elderly
Assistance with household cleaning and maintenance
A new year means a new emphasis on resolutions, life goals, and marking things off that bucket list. As caregivers, we may find ourselves abandoning our own dreams to help an ill relative tackle their own bucket list. Is there a better way to achieve fulfillment? One doctor believes so, and I tend to agree.
My father always wanted to visit his homeland of Belfast, Northern Ireland one more time before he died, but he never made it. A fear of flying, and the expense, kept him from going before Alzheimer’s wormed its way into his mind. My mother loved The Bucket List movie starring Jack Nicholson and Morgan Freeman, but never professed having her own list. There was a year-and-a-half of decent health before her cancer returned, and I wish we could have spent that time traveling and engaging in activities that would have brought her joy. After quitting my job to take care of my mother, I found myself mired in what seemed to be a fruitless, never-ending job search, and with family finances quickly dwindling, traveling was out of the question.
Caregiving is disruptive by nature, forcing many of us to quit a job, move, or shake up our household to accommodate a loved one needing assistance. Life goals, resolutions, and bucket list items often get kicked to the curb. As a caregiver, I often felt like I was lucky to just be surviving; thriving was out of the question.
I recently read an article titled, “Kicking the bucket list mentality,” in Aging Today by Marc E. Agronin, M.D., a geriatric psychiatrist. Agronin suggests a retooling of the bucket list concept that focuses more on aging with a purpose. Instead of focusing on what we can do as we age, we may be better off focusing on what we can be. A tropical cruise or trip to Europe offers instant gratification, but taking up a hobby like painting or performing volunteer work may offer deeper engagement and more sustained satisfaction. Agronin uses a real-life example involving patients to illustrate that waiting to do a grand item on a bucket list can have consequences. An older couple who had planned for years to ride motorcycles together across Florida encountered terrible weather and a rough ride, resulting in the need for medical attention. It’s not that people should stop taking dream vacations; just be aware that the caregiving life may take them down a different path.
It can be difficult to maintain some semblance of a life while managing the overwhelming duties of being a family caregiver. You may have to put that dream of a Paris trip on hold, but you may find time to take a virtual tour of the Louvre or learn some French with the help of an app. I’m working on my dad’s family history so that when I’m able make that trip to my father’s homeland, it will have a greater purpose than just sightseeing.
When I was caring for my mother during the last month of her life, sometimes the only beauty I saw was a ray of sun hitting the sun catcher in the kitchen window just the right way, the massive wingspan of a crow flying overhead or a family of deer tiptoeing through the brush. Though I could have easily overlooked these humble moments of beauty, I found myself aching for them. To kick the bucket list mentality, we need to take advantage of moments of splendor in the here and now, the only moments we are guaranteed to have.
Photo credit: MMAARRSS/Morguefile
Right after the accident, my life was sort of glamorous in a weird, morbid way. Everyone stopped what they were doing to rally around and pitch in. We’re young, none of our friends had experienced this before, and we were lucky enough to have friends who went all out. It was so tragic — the last time some people had seen us was at our wedding, cue the tears. It felt like our life was a movie, only in the end he didn’t make a miraculous recovery.
After that, things stopped being a tragic love story and started to be a grind. People stopped dropping off meals and checking in all the time. Everyone else went back to their normal lives. I spent 2016 feeling like I was slipping further and further away from myself. From the life I’d planned for us. From the husband I’d just married.
But my husband is still here. I’m still here. And this is our lives. I can’t just float along from one day to another forever. So I’m making a New Years Resolution — or three — to take my life back.
Choose to do this every day
If you asked me if I would ever choose to be a caregiver, I’d tell you no. It doesn’t feel like I made a choice. It feels like something that happened to me.
I know that’s not really true. The accident happened to my husband, which happened to me. But that doesn’t mean rearranging the rest of my entire life to take care of him was the only option. Yes, all of the options were terrible, but they were still options. Leaving him didn’t occur to me as a choice because I would never do that to someone I love so much, but I could have and I still could. Every moment of every day is me continually choosing to stay with him, ’til death do us part.
In a weird way, thinking about all of the things I could do instead of caring for him makes each day easier. Because for me any of those options would be harder.
My life felt like it was spiraling out of control. Remembering that I am choosing to do this — every moment, good or bad — makes me feel like it’s my life. My life isn’t on hold or being sacrificed or taken away from me, this is the life I’m choosing for myself.
I’m going to remember that this is what I want to do.
Do one thing for myself every day
It doesn’t take long to lose yourself as a caregiver. Everything is about my husband. Or, really, not about him but his needs. He’s not a spoiled child; he’s not getting any of the things he wants, either. I spend more time doing things for the hospital than doing things that are actually for my husband, like the cute, thoughtful things we used to do for each other.
At this point, I don’t even know what I want anymore. The things I used to enjoy seem completely irrelevant to me now. Or plain out impossible. I’ve changed so much and I want to get to know this new version of myself.
Maybe I’m going to get back to doing 5-minute sketches in the mornings. Or occasionally putting on makeup, just because. We can’t really go out, so maybe it’d be fun to make a nice dinner at home. Maybe it’s just giving myself permission to daydream, even though there’s always a chore to be done.
I’m going to get creative and think of things that aren’t expensive. Self-care doesn’t require a life coach or a credit card. It’s just listening to my own needs.
The one thing I might spend money on myself for is my own health. I used to think getting sick wasn’t an option with work. Ha! Now I want to be healthy for myself and my husband more than ever before. I’m going to make sure I get a checkup, go to the ob-gyn for an annual, do all the recommended screenings for my age group, and eat a little healthier. Hopefully coordinating to be able to do those things will mean more time for us together in the future.
I’m going to get to know this new version of myself.
First, let’s admit that I don’t really understand Snapchat. Luckily for me, it seems like no one over the age of 17 does and all of my friends are over 17, so we’re good. None of us know what the heck we’re doing or how those filters get added or what it means. This is why I had it installed on my phone for a really long time (in smartphone years) before I started using it.
But then one of my friends called me out for never viewing his snaps. When I told him I didn’t have anything exciting to send him, he told me I was missing the point. The point is hey, I’m thinking of you and I want you to be in my life. And he started sending me a barrage of the most boring snaps you can imagine. Waiting for his car to warm up in the morning. The silent elevator ride. The coffee cup on his desk in his cubicle. You get the idea. It was actually pretty fun and I had a whole new perspective on what it’s like to be him. And I started sending back boring snaps. He loved them.
Once I was checking Snapchat every day, friends I hadn’t heard from in ages started sending me snaps and I started sending them back.
When I was getting nonstop snaps from holiday parties I couldn’t go to, it was pretty hard. But let’s be honest that I was going to feel lonely and awful to be missing out no matter what. Instead of feeling forgotten, like all of my friends’ lives had moved on without me, here they were lighting up my phone every 20 minutes with silly little packets of hey, we love you and we miss you and we wish you were here.
I’m not going to make the holiday party next year, either. Being a social butterfly isn’t an option. But there are still ways to stay connected to my friends.
My goal for 2017 is to keep space for my friends in my life.
OMG! Another year has gone by which, in retrospect, feels like it occurred in the blink of an eye, and what’s done is done. The coming year holds many mysteries, trepidations, adventures, changes and losses, but many opportunities as well. So, I’m suggesting that we dispense with resolutions and just focus on living in the here and now; living in the moment. Let’s all just BE.
Instead of the promissory list that leads to disappointments and recrimination over what we’ve failed to do, let’s concentrate on WHO we want to BE and WHAT we want to BE rather than what changes we want to make.
There’s a certain amount of satisfaction in writing a list, and I’m not encouraging you to not to do so. I am encouraging you, however, to consider how you look at life. You should know “you are enough;” that doesn’t mean you can’t BE more.
So for the month of January, I’m going to consider how I want to “be” in my life. I may want to be loved, but “Be Loving” would have to come first. I want to “Be Fearless” but since I don’t want to be careless or reckless I also want to “Be Sensible.” One does not preclude the other. We may or may not have some of the same items on our lists, but maybe your sense of daring is not the same as mine. It is, however, no less authentic.
There is one item everyone I’d like to see on everyone’s list—BE Yourself. It is, after all, what you can be best at.
When you are a caregiver, you are the guide for your loved one as they cross the bridge toward death. The world, with colors and noise swirling around, keeps tugging and pulling on you, wanting you to come back, but the labored last few breathes of your loved one can’t let you go. You’re mesmerized. They are going to die and there is nothing you can do but help them across the bridge and try to get back to your side safely.
In spiritual folklore, some animals can cross between this world and the next. I am particularly fascinated by the folklore of the wolf. Wolves hunt in packs, dependent on one another to survive. But, when necessary, the lone wolf can travel without the others, their howls stretching high upon the heavens, to connect with the dead. Caregivers are like wolves. Fiercely pack oriented, they need a team to help but they are the only ones who can help their loved ones cross the bridge.
I remember my mother’s last few days, our downstairs den turned into the staging area for her crossing. I had a certification test coming up soon; nine months of work concluding with a grueling exam to determine if I was to be branded with initials at the tail of my name. But my mom was calling me to the bridge. The night before my test I went to see her; my inner lone wolf was howling. I had a sense that, during my eight hour exam, she would be gone, because we were counting hours, not days. When I got there, she already looked dead. Each labored breath seemed to be her last. Her skin was pale, her hands cold, her eyes glassy, her jaw was lax and skin tight, she looked closer to a skeleton than a woman. When I clasped her cold, clammy hand, she weakly gripped back. It was the softest grip my fleshy hands have ever felt but I was not able to break free. I just held her hand and tried to have her mimic my breathe. I wasn’t satisfied but I had to head back to my side of the bridge. If I didn’t, my side would be in shambles.
I passed my test and a few days later my mother died. I didn’t see her last breath. I didn’t need to. My side of the bridge kept calling and it repulsed me into anger; anger for the insensitivity of the pragmatic world, anger that my sweet mother was taken from me, anger and shame that I couldn’t watch her last breath. When I came back to my side of the bridge, I was different, I had changed. I wasn’t whole. The world, with all it’s color and noise, seemed different to me. I genuinely feel this side of the bridge has it wrong, our judgements, prejudices, and hate; that doesn’t exist on the other side. As you prepare to guide someone to the other side, all that matters is that you are able to pack enough love for their journey so they can streak across the heavens. Don’t forget to save some love for yourself though; you’re going to need it for the journey back across the bridge.
Shane P. Larson, CFP® has been a caregiver most of his adult life. With one semester left in college, his family received the devastating diagnosis of early-onset Alzheimer’s for their beloved mother.
Starting his career while also being pulled back home to help care for his mother shaped Shane’s perspective of the world. Taking the skills he learned as wells as the family lessons gained from caregiving, Shane started his own financial planning practice to assist other families who are facing similar situations and help guide them through the difficult task of caregiving.
Currently residing in Seattle, WA, Shane enjoys writing, reading dense books, riding his bike, obsessing over baseball, enjoying a slice of pizza and a pint of craft beer, and taking impromptu trips with his wife.
In my opinion, caregiver syndrome or caregiver stress is directly related to exhaustion, anger, rage, guilt, isolation or loneliness that results from unrelieved caring for a terminally or chronically ill dependent or loved one over a period of time. The healthcare professionals, will talk to you about caregiver syndrome or caregiver stress, but as it is not listed in the Diagnostic and Statistical Manual of Mental Health Disorders, that’s all it is, just talk.
Imagine, if something so widely known and talked about by the professionals was listed in the Diagnostic and Statistical Manual of Mental Disorders, insurance companies would have to cover any issues affecting the caregiver due to emotional stress, or physical illnesses. And there are so many.
More importantly, some of the many caregivers suffering emotional stress issues would qualify for some sort of compensation from local, state, or governmental health agencies. Disability issues among caregivers is certainly real and needs to be addressed, sooner, rather than later.
Care giving has been described as a “rollercoaster ride from Hell.” Many, if not most caregivers would probably agree with that definition. My experience is that, it certainly can be.
Life’s dirty little secret
What happens after the care giving or during long term caring. We know that many patients or loved ones outlive their caregiver.
This happened to me and can or could happen to many of you, in one form or another.
Three months after Annie died I had a physical. I was told all was well, with the exception of a vitamin D deficiency.
Immediately after the physical, I got a lecture from the doctor in a distinctively different tone of voice. He informed me that I needed to pay close attention to my body, as intense stress from care giving can set forth a chain of events in the body leading to a whole sundry of illnesses down the road. (I didn’t believe him.)
But, over time my immune system started letting me down, the illnesses started festering inside of me and I didn’t even know. My grief and loneliness was so intense, I simply wasn’t paying attention to my body. How could I? Dealing with grief was full time, and occupying all my thoughts.
Four years after the care giving,starting in January 2015, my immune system went into hyperdrive. It was like I was flying through time on a sea of illnesses. Full body inflammation, two heavy duty events with inflamed lungs requiring steroid treatments, shingles, Gastritis with Anemia, which was bleeding of the stomach that led to low red blood cell counts causing fatigue for, half of the year. And on top of that I developed heart trouble and had to carry a little bottle of nitro pills everywhere I went.
Over that dreadful year, my inflammation numbers were high enough to trigger a couple rounds of cancer tests. They didn’t see it but, it was there. In February 2016, I was diagnosed with a significant prostate cancer.
Sometimes giving your loved one everything you’ve got, even though it might not always be enough, the level of stress you’re enduring is probably overwhelming your body’s ability to function normally. And that leads me to the biggie…The caregivers diet. We may give our patient or loved one what they need in the form of nutrition, but for whatever reason we neglect our own bodies. I guess for me, it was just easier.
Of course, one of the suggested causes of prostate cancer is poor diet. And I certainly had that. Obviously that’s a man’s cancer, but consider this-it’s estimated that 35% of all cancers are caused by poor diet-as stated by Dr. Kathleen M. Stadler, Virginia Tech. Poor diet does not discriminate between a man or a woman.
The irony is, if we all ate healthy, and lived a healthy lifestyle, 80% of all cancers could be avoided, according to Dr. Stadler. She’s probably talking about some sort of stress free life inside a bubble, where there are no caregiver duties. Sort of, a semi-perfect world.
But, if by chance you fit the description of an intense caregiver, where your body is always in motion, or you fall into the category that I defined as Caregiver syndrome, or caregiver stress, you need to become self aware.
You probably can’t stop the train after it leaves the station, but I’ll bet you can slow it down as, I’m doing. I drink plenty of water, have a healthier diet, and walk 1 to 2 miles, 5 days a week. My inflammation is gone, along with other nuisance illnesses. My heart is healthy and stable, and my significant prostate cancer has, so far, made no further advancement since diagnosis. I turned down radical prostate surgery or radiation, for 2 genetic tests and a healthier lifestyle. And I’m so glad I did. My energy level is elevated and I really do feel well.
After the care giving, don’t let life pass you by. Try to rewind your thought process, get out of the fog, go for walks, have some fun and do whatever it is that your heart desires. I know it’s not easy, but you can do it, if I can.
I wish you all, the best.
My name is Patrice Marie White, I’m from the UK.
I am a former fulltime caregiver for my late mother.
The other day, I was guided to draw something in a childlike way that illustrates and depicts a scenario faced, both as an adult caregiver and as a child caregiver.
1am #nilbymouth #hospitalroom #bloodpressuremachine, #stilldarkoutside #disabledtoilet #hospitabed #Sidetable #Overnightbags ect : A Rough child-like #Illustration #Drawing of #pasttime #Adultcarer #ChildCarer #Scenario #Example situation many *have* *will*or *are* facing.
Woman reaching for #medicalnotes #careplan is me, so is the little girl holding a toy. #TIMELINE #Caregiving #Carer #YoungCarer #Youngcarers the saga STILL continues for many. <3 #neverforget
Every Christmas season I work myself up into a panic. As a busy caregiver and a mom, Christmas just feels like a lot of work. I’m determined to not stress out this holiday. Maybe I’ll even enjoy myself.
Here are the promises I’m making to myself this Christmas:
This is not my life. And that’s okay.
I am not going to make Pinterest perfect Christmas cookies
I’m not even going to try. We might bake cookies that look like lumps of coal. That’s just fine. Maybe I’ll even just buy cookies this year. And I’ll eat too many of them.
I am not going to send out Christmas cards
We all love getting Christmas cards, but it’s okay to not have time this year. I’m not going to feel guilty about it. A Facebook post or an email is just fine. And it’s totally fine that the kids are not going to sit still for a photo. It adds character.
I am not going to make Christmas dinner from scratch
It’s just not worth the time and effort. Stuffing out of a box is still delicious. The important thing is to spend time with my family and enjoy myself.
I am not going to get the perfect gift
I’m not going to wait in lines. I’m not going to obsess about it. I’m going to get presents, sure, but that’s not going to be the main way I show my love and appreciation for the people in my life.
I am not going to complete my to-do list
Ever. And that’s okay. I’m going to work on not putting things on there unless they really need to be done.
I am not going to go to everyone’s Christmas party
Actually, I never go to everyone’s Christmas parties. The real promise is that I’m not going to feel bad about not going. I have my priorities and they’re just fine. If there are some hurt feelings, people will need to understand that spending quality time with me can’t be lumped into a group event.
I am not going to regret what I didn’t do in 2016
I’ve done the best I can. I’m pretty impressed with myself. I’m going to leave it at that.
I remember when I loved Christmas and New Years. Before my mother got sick.
We try to pretend we’re a normal family at Christmas still. It doesn’t work.
Christmas planning used to be fun, if a little stressful. What new recipes should we try? What old favorites do we include? Which uncle will fail to RSVP and show up half way through dinner?
Maybe we weren’t going to be a TV family any time soon, but we had our moments. Christmas was about the little kids.
We try to pretend my mother’s illness doesn’t overshadow everything. We’re not kidding anyone.
The layers of planning for a holiday dinner are astronomical. Either we change all the recipes to things that are safe for her to eat, or we make two versions of everything. Every sentence is interrupted by the beeping and whirring of machines — or something she needs.
Every moment of every day is modified by her illness. Normally it doesn’t bother me. This is our life, this is our normal.
But there’s something about the holidays that really gets me down.
I’m no longer excited to stay up late to watch the ball drop. I just want to go to bed.
Normally I don’t feel like I’m missing out. My friends lead their own lives, I don’t need my life to be like theirs.
But at Christmas everyone else is sitting around opening gifts, spoiling the little kids, being an ideal of a family. On New Years we’re all looking forward to a brighter, better future.
And we can’t do that.
I wish we could do that.
June 29, 2005. A day I will never forget. Our 17 year old son Zachary was diagnosed with a DIPG, an inoperable, malignant brain tumor, carrying a survival rate of less than 2%. Our world crumbled before us as we were told Zach had 4-6 weeks to live. To say we were devastated does not even begin to cover the despair we felt. How could this be happening? What do we do now?
Because of the severity of Zach’s case, there was no time to research, get second opinions, or even stop to think for a second. We learned the exact diagnosis and prognosis late in the afternoon on a Thursday. Friday morning at 8:00 am he was being fitted for his radiation mask for treatments which started later that day. Chemo started that evening.
Beyond the emotional trauma our new reality looked nothing like the one we knew before.
Keeping yourself organized, while seemingly insignificant to some, during a difficult medical journey is not as easy as it might seem. Most days, just keeping yourself emotionally okay and somewhat together is more than enough. The list of daily (and often hourly) considerations and to-dos is long. There is so much critical information of which to keep track. Are the medications being taken at the correct time? Am I asking the doctors the right questions? How should I decide the best course of treatment? It is important for your mental health to stay connected to your friends and family, but even that can be overwhelming. How do I keep everyone updated on progress without repeating the story 20+ times each day? How do I organize my friends to bring us dinner and help with other chores? How can I find other people going through similar situations? It was our family’s medical journey that led me to develop a product to help people stay organized and connected through their own medical journey.
During our own journey, my husband and I tried to remain as upbeat as possible, holding on to a glimmer of hope, for Zach’s sake and our own. As the weeks progressed and his symptoms lessened, we were encouraged to learn that the tumor had started to shrink. As excited as we were by this news, it was tempered by the knowledge that these tumors generally shrink with radiation treatment, but sooner or later they regrow and cannot be stopped. We tried to bury our anxiety and carry on as happily as possible. We were planning for his life and planning for his death simultaneously.
We were lucky that Zach’s tumor shrunk to 40% of its original size and his chemo seemed to be holding it at bay. Zach finished high school and only had to deal with mild side effects. The honeymoon ended 15 months after diagnosis when the tumor started to regrow and he was ejected from his clinical trial. After four anxious weeks, a new clinical trial was able to enroll him and he started treatment again. Sadly, this treatment caused swelling in his brain, which dictated the long-term use of a powerful steroid that caused a build up of fatty tissue in his spinal column. With his spinal cord compressed, he soon became paralyzed, unable to move, swallow or speak. This paralysis led to a deep vein thrombosis, part of which broke of and traveled to his lungs, causing a pulmonary embolism. He died four weeks later.
After Zach’s death, I started a non-profit organization to help patients and families. I created the ZaggoCare System®, a how-to guide with organizational tools to help patients and their caregivers take control of and better manage illness or injury. Topics covered in the 120 page ZaggoGuide include how to manage medications, improve communication with doctors, become your own best advocate, and developing a support system.
100% of profits from sales of ZaggoCare Systems are donated to Zach’s Fund for DIPG research.
Why is this so important?
Studies have shown that effective patient-doctor communication leads to better adherence of treatment plans, better medical decisions, and better health outcomes. Yet, this is easier said than done. Doctors struggle to see patients in time-limited slots. Patients and families are so overwhelmed they can barely understand, never mind process, the information presented. Additionally, more patients recover at home for medical conditions previously treated in hospitals, forcing families to manage complex care.
The statistics are staggering. Preventable medical errors are the third leading cause of death in the United States. 40-80% of what patients hear in doctors’ offices is forgotten immediately — and even when information is remembered, almost 50% is remembered incorrectly. Without clear understanding of medical information, patients are more likely to skip medical tests, go to the ER more often, and have difficulty managing chronic illness. A recent report found that family caregivers feel unprepared for medical responsibilities, including medication management and coping with the lack of care coordination.
The ZaggoCare System provides guidance and tools needed for all patients and families to be engaged, empowered, effective members of their medical teams. Whether dealing with acute illness such as cancer, chronic illness such as diabetes, or serious injury such as traumatic brain injury, the ZaggoCare System can help you get the best care possible.
The letter below is from a caregiver ready to give up.
I am 67 years old, sleeping once again in the house I was raised in. I have given 6 years so far, caring for my 92-year old mother who has Alzheimer’s. My husband, children and grandchild live in another state, without me. People say this is the responsible thing to do.
I attended support groups for years and have read every printed book on Alzheimer’s and caregiving. It seems nothing helps anymore. I am just “stuck”. So I carry on each day, cooking, cleaning and handling the perpetual emergencies. One step at a time; one more day, and the days turn into years. This is my life’s sentence and one I had not planned.
I just want this to end and it seems hopeless. I am giving up. I no longer respect life in the end. The cost is too much for everyone. Do I give another 6 years? I have missed all these years without my grandchild. I’ll never have those years back again. I’m giving up.
Nobody said it was fair. Nobody said it would be easy. And it’s not fair and it’s not easy. Frustration builds, anger builds, resentment builds, aloneness, emptiness, hopelessness … it builds and builds and builds until you want to scream.
So go ahead.
The lady – I’m going to call her Anne – who wrote the letter emailed me afterward that she felt better.
She’s not alone. How many caregivers need, every now and then, to do what Anne did – let it out? And how many of you think you’re in this on your own?
Do what Anne did. Go to www.oldfriendsendlesslove.com, find this blog and, in the Comment section at the end of it … let it out. Let Anne know she is not alone in her occasional thoughts of giving up. If enough of you do it, you’ll find you’re not alone and you’ll find yourself in good company.
But you won’t give up.
That’s not who Anne is.
That’s not who you are.
You are a spark of something greater than you. A spark that pulls you, like the moon pulls the tide, toward Alzheimer’s, cancer, Parkinson’s, toward all that threatens life. You are not superman or Wonder Woman. In the big picture – no – in the biggest picture, the truth is you are Love and, after all the venting is done, you simply cannot be something you are not.
So go ahead – walk away for a day, vent, let all the frustrations out. You’ve earned the right to do that and you’ll feel better.
But you won’t quit. It’s not who you are.
A rock is a rock.
Love is love.
You are you.
A visit to the dentist is sometimes met with dread, but our mouths tell us more about our health than we may realize. I gained insight into the importance of oral health in my years as a caregiver for my parents.
Our family always had lousy teeth; some of my earliest memories are of going to the dentist. My dad avoided the dentist like the plague, but my mother dutifully spent many hours in the dentist’s chair. As a kid, I didn’t mind going to the dentist, because there was a huge chest of toys to choose from once the visit was over. At my mother’s dentist, there were homemade cookies! Through most of my adult years, my visits to the dentist were few and far between, but now I begrudgingly maintain regular visits, after suffering a chronic oral health issue and witnessing the complications oral health problems had on my parents.
A study published in the September 2016 edition of the Journal of the American Geriatrics Society found that periodontitis is associated with a greater risk of dementia. The study was of interest to me because I have periodontal disease and my father had Alzheimer’s. Because of Dad’s aversion to dentists, there is no way to know if he suffered from periodontitis, but he preferred to eat soft foods and seemed to have tooth and gum sensitivity. In the last months of his life, when dementia caused him to forget how to swallow, it made me realize just how much we take our mouths, and its many functions, for granted.
Oral health can be tricky to manage in dementia patients. Visits to the dentist, which already stoke fear in some people without dementia, can be disorienting and frightening to those with dementia. It can be difficult for those with dementia to follow orders, like keeping their mouths open or staying still for X-rays. But those with dementia need regular dental visits because they often cannot communicate when there is a problem. I know a woman who was shocked to learn that her father, who had dementia, had squamous cell carcinoma on the tongue. It went undetected at the assisted living facility, and took several months and multiple doctors to even reach a diagnosis. The issue went undetected even during an annual physical. Her father’s outward symptoms were weight loss, drooling and garbled speech. Her father was able to tell her that he was having trouble swallowing, but by then, the tumor had grown too big for treatment. He died just a month after diagnosis.
In the last years of her life, my mother had difficulty in getting her dental partial remade to conform to her shrinking gums and bone. While she was a trooper about it, she gave up healthy items she enjoyed eating, like raw carrot sticks, because of the ill-fitting dental device and her lack of remaining teeth. During my mother’s recovery from a colostomy, she developed serious blood clots that required her to be on blood thinners for several months. This can complicate some dental procedures that may cause bleeding. I was used to bringing a list of Mom’s medications to medical doctors, but I quickly learned that her medical history was equally important at the dentist.
When I was actively caregiving, I ignored my own health. I had to quit my job, and purchased a catastrophic-only health insurance policy, which was all I could afford at the time. I was grateful to have maintained decent health during my caregiving time, but knew there could be a price to pay afterwards.
I never experienced the common symptoms associated with periodontal disease, like gum bleeding and sensitivity. I had no symptoms whatsoever. The year before, I had undergone a root canal for a tooth problem that also caused no symptoms. After skipping the dentist for so many years, I was suddenly seeing a dentist, an endodontist, and a periodontist. I started out with some pockets of 7 millimeters in depth, so my periodontist took an aggressive approach to get it under control. I went through a scaling and root planing procedure, and now I get my teeth professionally cleaned a few times a year. I floss daily. The periodontitis is now under control, but I know it is a chronic condition that will require vigilance.
Every time I think about skipping a cleaning appointment, I think about how my parents suffered with their oral health. Most of these problems can be remedied with regular treatment. I have a job with good dental health benefits now. I have no excuses. We sometimes take our oral health for granted, but it is important for us to mind our mouths, and those of our loved ones who may not be able to actively participate in maintaining their own health due to conditions like dementia.
Photo by Marcelo Terraza/Freeimages
Sue Armstrong meets Pan Pantziarka, whose son George had Li–Fraumeni syndrome and lived with cancer from early childhood.
One of the bleakest moments in Pan Pantziarka’s long struggle with Li–Fraumeni syndrome was when doctors at Great Ormond Street Hospital in London told him there was nothing more they could do for his little boy. They had exhausted all options for treating his son’s cancer, “and at the age of four George was sent home to die,” he says.
George had been diagnosed at the age of two with rhabdomyosarcoma, a rare tumour of muscle tissue that appeared as a hard lump beside one eye. He had been through several bouts of surgery and many rounds of chemotherapy, and then radiotherapy as the original tumour returned, but nothing would shift the last traces of his disease, and his prospects looked grim.
In fact, George had 11 years of remission and regular childhood, and his family’s paralysing anxiety was beginning to lift. Then, he developed skin cancer. His doctors attributed the small lesion behind his ear to the radiotherapy he had received a decade earlier.
At this stage, no one except his father was prepared to link George’s cancer to his mother’s death from ovarian cancer just a year after he was born. For such a long time, says Pantziarka, “the mindset was just that we were an incredibly unlucky family”. It was not until George developed a third cancer, in his jawbone, within months of his skin cancer diagnosis, that alarm bells began to ring. The family was sent for genetic testing, and they heard of Li–Fraumeni syndrome for the first time. George, it transpired, had a mutant copy of p53, most likely inherited from his mother, and was extraordinarily susceptible to cancer.
While it was a relief to know at last what they were up against, the diagnosis of Li–Fraumeni was devastating. “The level of paranoia is just unbelievable,” says Pantziarka. “A child comes down with a bit of a cough, and most parents think, ‘Oh, it’s just a chill’. But for a Li–Fraumeni family every cough could be the harbinger of something terrible. The paranoia is isolating. But even more isolating is the fact that many of the professionals they come into contact with – you know, GPs, school nurses – have no understanding of what this is.”
Pantziarka was worried too about his daughter, Despina, seven years older than George: was she also a carrier of the mutant gene? The wait for her results was gruelling, but the news was good. For George, however, things got steadily worse. Within two years of developing osteosarcoma in his jaw, he had reached the end of the road again with conventional therapy. But he refused to give up hope. He and his father travelled to China, where novel ideas for treating cancer were being trialled. The expedition – involving interminable journeys on trains, planes and local buses for the very sick boy, tedious weeks in spartan accommodation and cheerless hospitals, the loneliness of an alien culture, and mighty struggles to communicate – sapped the strength and morale of father and son. And in the end it was too late for George. He returned home even more ravaged by disease and now suffering the side-effects of his many treatments, including a dropped foot from nerves damaged by the therapy. He died in 2011 at the age of 17.
“Most people, when they hear my family’s story, think it’s absolutely horrendous,” says Pantziarka. “But actually it’s not untypical of Li–Fraumeni syndrome. There are families in crisis, and then there are families who are waiting for the next crisis… It’s horrible, it really is.”
Since George’s death, Pantziarka, a data scientist by training, has used the expertise he developed from voracious reading about his son’s condition to apply his skills to cancer. Today he works for a non-profit foundation, the Anticancer Fund, set up by medics and scientists to encourage research into promising new treatments for cancer – especially the repurposing of existing drugs – that are ignored by pharmaceutical companies because they are a poor financial proposition. The Fund also offers direct support to patients, helping them to navigate the wealth of information on treatments and understand the best options for themselves.
Pantziarka is coordinator of the repurposing drugs project. “When we first started talking to people it felt like we were banging on a closed door,” he says. But as word has spread about trials with drugs like metformin, originally designed to treat diabetes and now being tested against cancer, things have begun to change. “It feels like we’ve turned a corner and there’s a massively increased interest in this idea.”
An extra from Brazil’s cancer curse
On December 12, 2001 an event unfolded into a life-changing experience for my family. My brother-in-law, Rodney, was in a car accident that on the surface appeared to be an urban collision. In my mind, it could not have rendered the life threatening catastrophic injuries that it wrought. However, the accident was freakish and Rodney’s injuries were profound.
The first few weeks after the initial shock of the accident, the reality of becoming a caregiver began to take shape. My husband was the logical choice for the decision making that had to happen. Without a long-term view of the requirements needed, my husband and I embarked on what has become a 15-year journey of discovery, success and pain.
In the initial months after the accident, Rodney was in a coma and non-responsive. He was breathing through a tracheostomy and fed with a tube directly into his stomach. The best advice at this time was to accept his condition and find an institution that would accept him. Living in Australia, this is an impossible task, as no nursing homes had places available for a young person with such profound injuries. This was the reason why my family cared for him. Rodney needed a home and intense therapy to retrain his brain and begin his long journey to recovery.
Luckily, we had the help of an amazing neurological nurse who spoke to us about the brain’s ability to recover some function. She told us to keep talking to Rodney, ask him questions, and play games to stimulate healing. My husband and I were working full-time and our children were in primary school, but we made time for daily visits and extended periods of therapy. Eventually, we saw progress. The neurologist simply insisted that we were just seeing what we wanted to see. Some of Rodney’s movements appeared to be reflexes, but not in response to stimuli. I knew the doctor was wrong. The first breakthrough was the catalyst for us to continue with purpose. We were working with a small soft ball that we had to place in Rodney’s hand. My son, who was only nine at the time, was taking his turn. He would prise his uncle’s fingers open, place the ball in his hand and gently unfurl his fingers to remove the ball. In what must have been a moment of boredom on my son’s part, he asked his uncle to throw the ball. Rodney’s fingers opened and the ball rolled towards the edge of the bed. It was a response.
From that humble beginning, we commenced a long process of finding the right place for his care and the right therapists to work with him. In 15 years, we have witnessed a significant awakening. While Rodney’s brain injury is profound and permanent, he is not. He is in a wheelchair and has limited physical movement of his upper body. However, he has learned to speak, feed himself and participate in decision-making concerning his care. We have been able to purchase and renovate his home to accommodate his needs. An appropriate care provider does the daily supervision, feeding and personal care for him. He has taken vacations and participates in family activities with us. But these things did not happen overnight. It has been a process of responding to his changing needs. It has taken thousands of hours, phone calls and meetings. There have been nights without sleep, sudden and terrifying declines and many nights in intensive care. It has been frustrating, heartbreaking and exhausting. There have been many times when we have wanted to throw in the towel and say that it has to be someone else’s turn. However, we have persevered.
This is because we have been able to do this as a family. While my husband has taken the lion’s share of the work, it has only happened because we were all in this together. It was a decision to accept that this was our challenge. Together, we have moved forward and Rodney has had the best chance to live a positive and enriched life despite his disability.
When a car accident is reported, people are aghast at the images of broken cars, the horror of the injuries and loss of life. Few ever consider what the long-term complications might look like for someone with a brain injury. They also don’t usually consider what the future looks like for the family who takes on the care of the now disabled family member. It is never something you would expect. It might even be something you think you could never do. Perhaps 15 years ago we might have had that same thought. Like many challenges, it seems impossible at first. But you never know how strong you can become in the face of relentless negativity when faced with a life-changing responsibility.
Caring for someone with a disability is complicated. Not caring is unthinkable.
Tracey Lee is an English teacher at St. Peter’s Anglican College and the author of “What Remains.” She has taught English and behavioral science for more than 30 years. Lee received her bachelor’s degree in education from the University of Tasmania and a master’s degree in creative writing from the University of Canberra. She resides with her husband in Malua Bay, Australia.
How do you tell someone that they’re seriously ill, or even dying? Chrissie Giles explores how doctors learn and how they deal with the stress and trauma, for both their patients and themselves.
Listen to or download an audiobook of this story on SoundCloud and iTunes.
I was 14 when I was told that Dad was dying.
I was sitting on the floor of our lounge. Mum said that she had some news. Sensing the worst, I fixated on the newspaper open in front of me, staring at an advert for German cut glass. It was cancer, in his pancreas, and he might only live a few more months.
They were going to try an operation, she told me and my sister, to reduce the pain. As a nurse, she must have known that this was unlikely to work, but she knew her audience and didn’t want to overload us with information. She must also have known that pancreatic cancer has one of the bleakest outlooks, due in part to a lack of symptoms in the early stages. By the time you start to notice the nausea, jaundice or weight loss, it’s too late to hope that it’s something less serious.
That night, as I wrote my diary, I could think only about how I felt. Reading it back now I wonder what it was like for my mum, still reeling from the news herself and having to tell the rest of us.
As a doctor, Kate Granger often deals with discussions of bad news and end-of-life issues. But there’s another reason the subject interests her. Three years ago, at age 29, she was diagnosed with a very rare and terminal form of cancer that affects soft tissue. She’s spoken and written widely about her experiences living with a terminal disease. She spearheaded the #hellomynameis campaign, to get people working in the NHS to introduce themselves to every patient they meet. She’s planning to live-tweet her own death.
Granger was diagnosed with cancer while on holiday in the USA. “I came up against some tough episodes of breaking bad news when I got back to the UK,” she says. “When I got my MRI results, I was told when I was by myself by a junior doctor who didn’t know what the plan was going to be.”
In pain and alone, she was told “without a warning shot” that her MRI scan showed that the cancer had spread. “He was basically giving me a death sentence. He sort of couldn’t wait to leave the room and I never saw him again.”
Her experiences have shaped her as a doctor. “I think I was a fairly compassionate, empathetic doctor, but having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs Smith that she’s got lung cancer’ as a task.”
I ask several doctors to share their experiences and the patients that stick in their mind. One remembers a woman who came in soon after Christmas. She’d been in and out of the doctor’s over the last nine months or so, with general symptoms that are all too easy to ignore: feeling tired, swelling. Then she had suddenly become jaundiced and short of breath, so a relative brought her into A&E.
It was one of those situations, the doctor says, where you pull the curtain back and immediately think, “This is not good”. “On very few occasions do you touch something and say, ‘This is cancer’.” When she examined the patient’s abdomen it felt “rock hard”.
“She kept saying to me, ‘It’s going to be fine, isn’t it?’ And I’m saying, ‘We’ll do everything we can, let’s just do a few tests and figure out what’s going on.’ At that stage in my mind, I knew it was bad, but I still had to figure out exactly what flavour of bad it was.”
The woman was anxious to be home on New Year’s Eve to make a call to family overseas. But blood tests confirmed that she’d need to stay.
“She said to me, ‘Tell me the worst-case scenario.’ I looked at her. She looked at me. And in my mind I was thinking, ‘She’s not ready for this diagnosis.’ Then her relative stepped in and she said, ‘No, no, she means what’s the worst-case scenario in terms of how long does she have to stay in hospital?’
“At that moment, you realise that we all know exactly what we’re talking about, but we’re all accepting it to different degrees.”
Compartmentalisation seems to be important in coping – she mentions several times that bad news, death, is part of the job. “You have to be strong for the family. I can easily go back into the staffroom and cry my eyes out, but in that moment I have to be there, I have to be the hand to hold, or the shoulder for the patient to cry on.”
The doctor speaks of the first patient she cared for, a man with metastatic prostate cancer. She was called into his room by his wife, and as she arrived, the man took his last breath. His wife broke down onto the floor in front of her. “In that moment, you have to say, ‘I’m sorry, he’s gone.’ And you kind of just have to suck it up and be there for them in that moment because that moment is everlasting for them.”
It’s an office that could be anywhere, except for the clinical examination bed in the corner, complete with curtained cubicle. The A4 sign blu-tacked to the door reads: “Room booked for breaking bad news all day”.
Six medical students sit listening. “They’re real. They cry, they shout,” the facilitator, a doctor, tells the circle in front of her. Nerves crackle in the air, a few people let out self-conscious laughs. The facilitator is referring to the two actors who have come to rehearse scenarios with the students, who are one year from being qualified doctors.
Understandably, they have a lot of concerns: about getting emotional, whether or not they should touch patients, saying the wrong thing, not saying the right thing, not saying anything at all.
The scenarios are given out. The students’ eyes hurriedly scan down their sheets of paper. Cringes. Sharp intakes of breath. One scenario is based around telling a parent that their son has suspected schizophrenia. Another, that a person’s relative has unexpectedly died in hospital. One peers over his neighbour’s shoulder. “You got the short straw,” he says, shaking his head.
When the time comes, his neighbour heads for the door. “You might want to take in some tissues for this one,” the facilitator tells him. “Yeah, for me,” the young man replies.
The rest of the group watch on a live video link, seated in plastic chairs in a half-moon in front of the screen. They touch their faces self-consciously, arms crossed protectively across their bodies. The speaker hisses.
In the room sit a couple. The woman fiddles with her handbag, refusing to accept the news. The man stares silently at his hands, fists clenched around his mobile phone. “Is that true, or just something you say?” he says aggressively to the young doctor. He’s just been told that his baby, born at just 26 weeks, has severe brain damage and is unlikely to survive.
The students’ eyes dart to each other across the room. A shake of the head, a smile, a wince, sensing their colleague’s pain – pain they are all going to feel for themselves sooner or later.
Telling the truth takes its toll.
Researchers at Aristotle University in Greece have found, perhaps unsurprisingly, that telling a (pretend) patient that they had cancer was more stressful for a doctor than concealing the diagnosis. Doctors who don’t tell the truth, they suggest, may be doing so to keep control of the situation and avoid their and their patients’ emotional reactions.
The stress of having ‘bad news’ conversations can lead some doctors to put them off, or to deliver news in a less-than-optimal way, says Dr Laura-Jane Smith, a respiratory registrar in training who works in London.
Finding the right time and place to have conversations about things such as progression of disease can be challenging, and patients react in all sorts of ways. “Some people will want to have that conversation when they realise that they’re unwell. Some people will strongly say, ‘I’ve been in hospital before, there’s no way you’re sending me to [intensive care],” says Smith. Some just don’t want to know.
There’s also the danger of shooting the messenger. Katherine Sleeman, medical doctor and lecturer at King’s College London’s Cicely Saunders Institute, quotes froma study that found that patients perceived doctors as better communicators when they gave a more optimistic view of palliative (non-curative) chemotherapy. “It seemed as though you can inform patients that a disease is incurable but at the expense of the relationship with them, which is fascinating,” she says.
The demands that patients and families put on doctors – to find a balance between honesty, truth and hope, to be human, yet not too human, to know everything, even the unknowable – add to the stress.
“I think we find it difficult to admit that we don’t know,” says Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care at the University of Cambridge, “because patients come to us, and we look to ourselves to be people who investigate, make decisions, make a diagnosis and have an action plan.”
He thinks that doctors find it quite emotionally difficult to acknowledge uncertainty – something born of not the doctor’s incompetence but more the unpredictability and uncertainty of so much of medicine, particularly the later stages of many diseases. “It is frightening. No one ever enjoys having these sort of conversations,” he says.
It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…”
For my sister, a doctor for eight years, it isn’t so much telling the bad news that stays with her, but the small, seemingly insignificant things that went along with it: noticing a pristine newspaper, unread, on the bedside locker of a patient who had just died, despite attempts at cardiopulmonary resuscitation. Finding a cheque waiting to be paid in in the wallet of a man who’d had a fatal accident.
These things – the physical manifestations of the nearly-done, not-done, never-to-be-done – seem to resonate. Unopened birthday presents, cancelled holidays, unworn clothes: all symbols of a life ending prematurely, of potential diminishing, of a future fading. They’re what remain after the practicalities of dealing with a patient and their relatives are long forgotten.
You do what you can to process it, one doctor says. Review what has happened from a medical management point of view: analyse, rationalise, conclude. Did we do everything we could? Would we do anything differently next time? Have a cup of tea, splash your face with cold water, have a cigarette, get on with the next patient.
Then your shift ends.
Self-medication takes a variety of forms. For some doctors, it’s straight to the pub. One (teetotal) doctor’s prescription: “Go home, order a pizza, eat lots of ice cream, sit in front of the TV and watch trash.” Another has a friend who’s also a doctor, and they’ve agreed that either of them can call the other at any time and vent.
Annabel Price, Consultant in Liaison Psychiatry at Addenbrooke’s Hospital, Cambridge, says that some doctors are more vulnerable to being affected emotionally by breaking bad news than others. This may be because they are struggling with bereavement or mental health issues in their own lives. Or it may happen if there’s a patient or medical case that they relate to particularly closely.
Doctors need to be resilient, but so do the organisations that they work in. “You would hope that if a situation is very difficult for an individual… the team then would help them to manage it, either by allowing them to step back or by providing them with extra support to be able to do that,” says Price.
“I would be very optimistic if I said that that works 100 per cent well every time and that all teams function in that way, but that’s the ideal that I think we should be working to: recognising that doctors are people, just as much people as our patients are, fallible humans who have our strengths and weaknesses, and weak points and struggles, just like anybody else.”
Dedicated services do exist for doctors to get help with their mental health, for example, but are those in need willing or able to find and use them?
One paper, advising junior doctors on how to look after their mental health, identifies three challenges for doctors seeking medical help. The first is stigma, including the fear that seeking help will lead to their fitness to practice medicine being challenged. The second is the idea that doctors can feel that they are somehow “letting the side down” if they need time off. The last is barriers to care. “Doctors do not make good patients,” the authors write. “Typically they do not follow their own health care advice, they self diagnose and self medicate, and they present late after ‘corridor consultations’. Once unwell, doctors are often reluctant to consult a general practitioner (even if registered) or to take time off work.”
Moreover, healthcare systems are far from perfect. Resources – including the time, space and supportive colleagues conducive to productive, healthy working lives – are often limited.
I asked Twitter if doctors need, and can get, support when breaking bad news. An Australian doctor summed it up: “Can’t even get time at work to go to the toilet while working in [the emergency department], let alone support when breaking bad news”.
When you are giving bad news about a life-limiting illness, many patients and their families want to know all they can about the condition: treatments, cures and how long patients survive. But the data aren’t always available. Studies are often small, or dated, or in populations of patients so different that findings are hard to extrapolate to the patient sitting in front of you. Everybody and every body is different – so certainty can be in short supply, at the very time when people want it most.
“How long have I got?” is an especially dreaded question. No clinician I speak to says that they give patients actual numbers, often preferring to talk about whether it is a matter of years, months, weeks or days. This is because prognostication – judging the course of a disease or condition – is notoriously hard. While there are ways to assess imminent death in, for example, a patient with terminal cancer, it can be extremely difficult to estimate how long a patient with frailty, dementia or a chronic lung condition will live.
Research shows that doctors tend to overestimate the survival of terminally ill patients, predicting them to survive more than five times as long as they end up doing.
Stephen Barclay never gives numbers to patients asking about survival. He reinforces this practice to his medical students: “I teach the students very firmly not to give numbers because often the information isn’t there,” he says. “And if the information is there, it’s average survival and by definition of an average, 50 per cent of patients live longer and 50 per cent live shorter.”
Giving people a ‘sell-by’ date is not only virtually impossible but can be harmful. “I’ve certainly had a number of patients who have been told, ‘you’ve got six months’, and when six months comes they assume they’re going to die today and that can be really difficult if they’re clearly living longer,” Barclay says. Conversely, if things are clearly moving on a lot more quickly then having a particular date in mind can encourage people to have unrealistic hope.
Laura-Jane Smith agrees that you have to choose your words carefully. “What I have realised from having spoken to patients is that they never forget that conversation, and actually quite often they don’t forget the specific words that you use,” she says.
“You fall into the trap of wanting to dress it up, and wanting not to use words like ‘cancer’ and ‘incurable’ and ‘life-threatening’,” she says. “The more that I do it, the more I try and find ways to say things as clearly as possible without being blunt and I think that’s much more effective.”
Individual words matter. Professor Elena Semino and colleagues at Lancaster University have been conducting a study of how certain kinds of language are used in communication about the end of life. They’ve created a set of over 1.5 million words, collected from interviews and online forums, where patients, carers or healthcare professionals meet to talk with their peers.
Violence or war metaphors (“battling my disease”, “keep up the fight!”) can be disempowering or disheartening for people with cancer, potentially demanding constant effort or implying that a turn for the worse is a personal failure. But in other contexts, they can empower people, helping someone express determination or solidarity, or bringing a sense of meaning, pride and identity.
“You don’t need to be a linguist to realise what metaphors a patient’s using,” says Semino. Doctors should ask: are those metaphors working for the patient at that point? Are they helpful, giving them a sense of meaning, identity, purpose? Or are they increasing anxiety?
While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.
Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.
“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”
While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.
Barclay cautions that the urge for so-called “professional tidiness” – getting these end-of-life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.
For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.
But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.
Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.
“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”
Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.
Though my Dad’s terminal diagnosis came nearly 21 years ago, my mum remembers his reaction clearly. “Dad turned to me and said, ‘Well, I’ve had a good life, a very happy life’.” He was reluctant to have the operation that might prolong – but not save – his life.
I remember him coming home from the hospital soon after, to rest before the operation. We’d bought him an apple turnover, his favourite cake, but it remained uneaten. Dad was propped up in bed, writing a list of things to do. He phoned a neighbour and invited him to take the tools he wanted from our garage. He read a letter an old friend posted through the door, triggering the only tears my mum remembers.
A couple of days later, earlier than planned, he was taken back to hospital. He didn’t come home again. But the short time that he lived knowing he was terminally ill gave him the chance to say goodbye. And us the same.
Before he leaves for his outing, my father beckons me out onto the ramshackle porch of the rental cottage. He solemnly hands me a tablet of thick white artist’s paper and a pristine box of 24 crayons.
“I want you to get your mother interested in art again,” he says. “I believe she can still draw and paint, but she resists when I mention it. You’re the only one who can help her.”
My parents, my brother’s family, and my two daughters and I are on a family trip to Hot Springs, Arkansas. Mom has been struggling with forgetfulness and odd behaviors (or rather I should say Dad has been struggling with her forgetfulness and odd behaviors) for a couple of years now. As long as Mom is near Dad, she seems happy enough, paddling around in the swimming pool, being near her young grandchildren, and reminiscing about her earlier life. But when Dad takes even a short break, Mom’s mouth tightens and her eyes search wildly. “Where is …?” she asks, over and again, twisting her hands.
Today, my father is joining my brother and the children for boating and tubing. Since Mom doesn’t like such heat and noise, I volunteer to spend the day with her.
I nod gravely when my father hands me the “art supplies.” I seriously believe I, Super Daughter and Muse, can fulfill my father’s request to reunite my mother and her passion for art.
I haven’t yet accepted Mom for who she is now. I’m still grieving the loss of the mom I’ve always known and I earnestly believe that the best possible idea is to return her to the artist, mother, wife, and grandmother she used to be.
That afternoon, shortly after Dad leaves, I lure Mom to the small Formica kitchen table with coffee and chocolate chip cookies.
“Where is…” Mom asks, knotting together her fingers.
“He’s out with Dan and the kids. They’re going boating,” I tell her. “He won’t be gone too long.”
Mom stares at me accusingly.
“Where is Paul?” she says, her voice wobbly.
“He’s with the kids. He’ll be back soon.”
I hand her a sheet of paper and take one for myself. I spread the crayons out and say,
“Why?” she says.
“Because it’s fun,” I say, touching her hand and looking into her eyes, just as I imagine a muse might do. “Because you enjoy making art. You’re good at it.”
After I left home for college, sketching and painting became Mom’s creative mainstays. She produced hundreds of paintings, often bringing to life old photographs that captured a snippet of family history: Dad’s father appearing wickedly self-confident in a game of poker; her own mother, before she immigrated to America, as a shy young woman with an upswept Gibson girl hairdo; her grandchildren dancing around my den in a mad-cap talent show. But she hasn’t touched a brush or pencil in several years, and Dad has mourned mightily over her abandoning this passion.
“Where is…?” Mom asks.
“Let’s make a picture for Dad,” I say. “He’ll be thrilled.”
I hand Mom a yellow crayon and I pick up a purple. I draw a series of squiggling lines. I add in a green, then a blue. I envision Dad’s beaming face when Mom hands him her sketch of yellow roses. I imagine his warm hug and his grateful, whispered words, “Thanks, Debbie. I knew you could do it. I feel like your mother’s come home.
My wild colorful lines fill the page. Finally, I glance up, ready to admire Mom’s work. But all I see is a blinding sheet of yellow. She has scrubbed the yellow crayon across the page. No flowers, no independent lines, no blending of colors. I bite my lip, tasting bitter failure, and imagining the look of despair on my father’s face.
That was before I had learned to let go of Mom as a representational artist and embrace her mellow yellow creation. That was before I accepted the challenge of journeying to my mom’s current world instead of struggling unsuccessfully to drag her back into mine. I finally did let go and embraced my mom as she was. Mom learned to laugh at her forgetfulness; she learned to communicate with smiles and gestures; she learned the art of living in the moment. And I learned along with her.
Today, if I could once again sit beside her coloring, I would simply enjoy the process and not set myself up as a failed Super Muse. I might just say, “I love the brightness of that color,” and not yearn for a bouquet of roses that would prove Mom was the same as ever. I might see if she and I could draw something together. We’d take turns making lines on the paper, sketching out a non-verbal dialogue. I’d play some of her favorite songs while we drew and we’d sing along. I might include some soothing lavender tea, accompanied by decadent chocolate chip cookies. Whatever we did together, I would cherish that shared time.
By Deborah Shouse, excerpt from Connecting in the Land of Dementia: Creative Activities to Explore Together
Deborah Shouse is a writer, speaker, editor, former family caregiver, and dementia advocate. Deborah’s latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so you can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for dementia programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more, about Deborah and her work, visit DementiaJourney.org
Meet the donors, patients, doctors and scientists involved in the complex global network of rare – and very rare – blood.
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His doctor drove him over the border. It was quicker that way: if the man donated in Switzerland, his blood would be delayed while paperwork was filled out and authorisations sought.
The nurse in Annemasse, France, could tell from the label on the blood bag destined for Paris that this blood was pretty unusual. But when she read the details closely, her eyes widened. Surely it was impossible for this man seated beside her to be alive, let alone apparently healthy?
Thomas smiled to himself. Very few people in the world knew his blood type did – could – exist. And even fewer shared it. In 50 years, researchers have turned up only 40 or so other people on the planet with the same precious, life-saving blood in their veins.
Red blood cells carry oxygen to all the cells and tissues in our body. If we lose a lot of blood in surgery or an accident, we need more of it – fast. Hence the hundreds of millions of people flowing through blood donation centres across the world, and the thousands of vehicles transporting bags of blood to processing centres and hospitals.
It would be straightforward if we all had the same blood. But we don’t. On the surface of every one of our red blood cells, we have up to 342 antigens – molecules capable of triggering the production of specialised proteins called antibodies. It is the presence or absence of particular antigens that determines someone’s blood type.
Some 160 of the 342 blood group antigens are ‘high-prevalence’, which means that they are found on the red blood cells of most people. If you lack an antigen that 99 per cent of people in the world are positive for, then your blood is considered rare. If you lack one that 99.99 per cent of people are positive for, then you have very rare blood.
If a particular high-prevalence antigen is missing from your red blood cells, then you are ‘negative’ for that blood group. If you receive blood from a ‘positive’ donor, then your own antibodies may react with the incompatible donor blood cells, triggering a further response from the immune system. These transfusion reactions can be lethal.
Because so few people have it, by definition, rare blood is hardly ever needed. But when it is, finding a donor and getting the blood to a patient in crisis can become a desperate race against the clock. It will almost certainly involve a convoluted international network of people working invisibly behind the bustle of ‘ordinary’ blood donation to track down a donor in one country and fly a bag of their blood to another.
Forty years ago, when ten-year-old Thomas went into the University Hospital of Geneva with a routine childhood infection, his blood test revealed something very curious: he appeared to be missing an entire blood group system.
There are 35 blood group systems, organised according to the genes that carry the information to produce the antigens within each system. The majority of the 342 blood group antigens belong to one of these systems. The Rh system (formerly known as ‘Rhesus’) is the largest, containing 61 antigens.
The most important of these Rh antigens, the D antigen, is quite often missing in Caucasians, of whom around 15 per cent are Rh D negative (more commonly, though inaccurately, known as Rh-negative blood). But Thomas seemed to be lacking all the Rh antigens. If this suspicion proved correct, it would make his blood type Rhnull – one of the rarest in the world, and a phenomenal discovery for the hospital haematologists.
Rhnull blood was first described in 1961, in an Aboriginal Australian woman. Until then, doctors had assumed that an embryo missing all Rh blood cell antigens would not survive, let alone grow into a normal, thriving adult. By 2010, nearly five decades later, some 43 people with Rhnull blood had been reported worldwide.
Hardly able to believe what she was seeing, Dr Marie-José Stelling, then head of the haematology and immunohaematology laboratory at the University Hospital of Geneva, sent Thomas’ blood for analysis in Amsterdam and then in Paris. The results confirmed her findings: Thomas had Rhnull blood. And with that, he had instantly become infinitely precious to medicine and science.
Researchers seeking to unravel the mysteries of the physiological role of the intriguingly complex Rh system are keen to get hold of Rhnull blood, as it offers the perfect ‘knockout’ system. Rare negative blood is so sought after for research that even though all samples stored in blood banks are anonymised, there have been cases where scientists have tried to track down and approach individual donors directly to ask for blood.
And because Rhnull blood can be considered ‘universal’ blood for anyone with rare blood types within the Rh system, its life-saving capability is enormous. As such, it’s also highly prized by doctors – although it will be given to patients only in extreme circumstances, and after very careful consideration, because it may be nigh on impossible to replace. “It’s the golden blood,” says Dr Thierry Peyrard, the current Director of the National Immunohematology Reference Laboratory in Paris.
Blood groups are inherited, and Rhnull is known to run in families. So the next step for the haematologists in Geneva was to test Thomas’ family in the hope of finding another source, particularly as Thomas wouldn’t be able to donate until he turned 18. Things looked even more hopeful when it turned out Thomas’ grandfathers were third-degree cousins. But the tests showed Thomas’ Rhnull blood was due to two completely different random mutations on both sides. Pure chance, twice over, in the face of vanishingly small odds.
In 2013, Walter Udoeyop received a letter from an old friend back in Nigeria. Father Gerald Anietie Akata’s 70-year-old mother had a tumour in her heart, but no hospital in Nigeria could perform the surgery she needed. Akata enclosed his mother’s medical records, asking for Walter’s help.
Walter, a consultant at Johnson City Medical Center, Tennessee, knew from the start this wasn’t going to be easy. Francisca Akata’s operation would cost a daunting $150,000 minimum if she had it in the USA. Father Akata had been a pastor in Johnson City for several years, and Walter initially hoped to enlist the help of the church and hospitals his friend had served in. But neither could raise such a large amount of money.
He recalled that another friend had recently had open-heart surgery in the United Arab Emirates (UAE) for only $20,000. He phoned the hospital there, and the staff agreed to operate on Francisca. Father Akata’s parishioners in the USA and Nigeria raised the money, and three months later, Francisca Akata was flying eastwards towards the UAE.
But a few days after her admission, the doctors told Francisca that blood tests had revealed that she had a rare blood type, shared by 0.2 per cent of the white population: Lutheran b negative. To complicate the matter, she was also O negative – the uncommon, but not officially rare blood type that many of us have heard of, shared by around 5 per cent of people. The combination made Francisca’s blood so rare it would be difficult, if not impossible, to find a match for her.
Since there was no compatible blood in the UAE or any of the other Gulf States, Mrs Akata had to fly back home and wait until matching blood was found. The hospital searched for blood but couldn’t find any in the two weeks that followed.
Walter requested Francisca’s blood tests from the hospital and then began the search for compatible blood in the USA. He tried blood centre after blood centre across the country before he was referred to the American Rare Donor Program in Philadelphia, a database of all rare blood donors in America. Finally, he had located some suitable donors.
His relief was short lived because, as Thomas or Peyrard could have told him, it’s a lot harder for blood to cross borders than it is for people. “You would not imagine how difficult it is when you have to import or export rare blood,” Peyrard says. “Your patient is dying, and you have people in an office asking for this paper and that form. It’s just crazy. It’s not a TV set, it’s not a car. It’s blood.”
Sometimes sending blood from one country to another is more than a bureaucratic nightmare. As Walter now discovered, the hospital in the UAE had a policy not to accept blood donations from outside the Gulf States, which meant that Francisca wouldn’t be able to use the blood he had found in America.
The situation looked bleak. But then, after a chance meeting with a colleague, Father Akata found out about a small general hospital in Cameroon, Nigeria’s neighbour to the east, that had set up a heart surgery programme with funding from the Catholic Church. Walter got in touch with the surgeons there, who confirmed that they could do the surgery if he could supply compatible blood.
The American Rare Donor Program contacted the South African National Blood Service, which had four suitable donors listed; however, one of these was unreachable, one wasn’t able to donate until later in the year, and two had been medically retired from donating. These are all common problems with rare donors. There are limits placed on how often people can donate. What’s more, keeping track of donors can also be a challenge – some get ill or die, and others move home without updating the blood services.
There were two units of compatible blood in South Africa’s frozen rare blood bank, but frozen blood has a 48-hour lifespan, compared to four weeks for fresh blood. If it got held up at customs, or delayed for any other reason, it would be unusable by the time it reached the hospital in Cameroon. To use the frozen South African blood, Francisca would have to have her operation in South Africa. Walter was running out of options.
When he turned 18, Thomas was encouraged to donate blood for himself. There is now no frozen blood bank in Switzerland, so his blood is stored in the rare blood banks in Paris and Amsterdam. He travels to France to donate, avoiding the bureaucratic machinery that would grind into action if his blood had to be sent over the Swiss border to Paris.
The first urgent request came a few years after Thomas began donating, when he got a phone call asking if he would mind taking, and paying for, a taxi to the blood centre in Geneva to donate for a newborn baby. That moment brought it starkly home to him how valuable his blood was. It was perhaps also the first intimation that the costs of donating would ultimately be his. Some countries do pay donors (and some pay more for rare blood) to encourage donations. But the majority of national blood services don’t pay, to deter donors with infections such as HIV.
The altruistic ethos of the blood services in western Europe means that they also don’t cover donors’ travel costs or time off work, both of which would constitute payment for blood. They can’t even send a taxi to take a rare donor to a blood centre, although the blood itself can travel by taxi from the centre to a patient.
It’s something that can become a frustrating and potentially fatal problem. Thierry Peyrard told me that he was recently contacted by a doctor in Zurich asking for blood with another rare combination of negatives, for a patient about to undergo surgery. There were only four compatible donors in France, and Peyrard could only contact two by phone. One of them was a 64-year-old lady living in a village near Toulouse. Although she was more than willing to go to the blood centre in the city and donate, since she can’t drive she simply couldn’t get there.
So unless his doctor drives him over the border again – a courtesy going far beyond the call of duty between a doctor and patient – Thomas will take a day’s holiday from work, twice a year, and travel to Annemasse in France to donate, paying his own travel costs there and back.
Walter had one last chance to find the blood Francisca Akata so desperately needed: a small laboratory on the other side of the Atlantic. The modest size of theInternational Blood Group Reference Laboratory (IBGRL) in Filton, near Bristol in England, is misleading; the expertise at the IBGRL means it’s one of the world’s leading laboratories in rare blood identification.
If the donor and recipient are in different countries, the blood services of both countries will negotiate costs. The requesting country usually covers the cost of flying the blood in at 4°C, the temperature at which fresh red blood cells have to be preserved to keep them intact before transfusion.
“It’s generally a reciprocal agreement between countries so that no one who ever needs blood is penalised for being where they are,” Nicole Thornton, Head of Red Cell Reference at the IBGRL, told me. “Some countries charge a bit more per unit of blood, but there’s no hard and fast rule. Most don’t charge too much because they might be in the same situation at some point.” In the UK the charge is £125.23 per bag of blood.
Walter contacted Thornton, who searched the International Rare Donor Panel and identified 550 active O negative/Lutheran b negative donors worldwide. Because they are inherited, blood types tend to pool in specific populations, and 400 of those donors turned out to be in the UK – most of them in or around London. A flight from the UK to Cameroon would be much shorter than a flight from the USA. And the blood would be fresh.
As the blood was available, and because it wouldn’t make logistical sense to fly a second consignment if Francisca needed more than four units, the UK blood services agreed to send six bags of blood. All six UK donors who received a phone call and were able to donate did so within days.
In Rochester, Kent, England, it was James’* 104th donation. He first donated as an 18-year-old in the army in 1957, when he was told his O negative blood was “good for blue babies”. In 1985 he got a letter explaining his blood was rare (although not how rare) and asking if anyone in his family would donate so their blood could be tested. The family members he asked were reluctant, however, believing they “needed their blood for themselves”.
A few years later, in the early 1990s, James got his first phone call from the blood services, asking whether he would mind “popping down to the local hospital to donate blood for someone in Holland”. There, he was told that a taxi was waiting for his blood. He didn’t think this particularly unusual, saying that it was all in a day’s donation.
He wasn’t surprised to be called up again, but he didn’t know that his blood was going to Cameroon. And previously he hadn’t known he was Lutheran b negative, as well as O negative. He was surprised and mildly intrigued to learn that there were only 550 known people with the same blood in the world.
The bag of James’ blood joined the five bags from the other donors, and all six were couriered to Tooting in south London to start their 7000-km journey.
This was when Walter discovered how remote the hospital really was. Kumbo, in the mountains of north-west Cameroon, is more than 400 km north of both Douala and Yaoundé, the sites of the country’s major international airports. The blood would have to travel for several hours to get there, bumping over a dirt road in the March heat. Even packed in ice, it would be hard to keep it at the cell-preserving 4°C.
Francisca Akata’s blood landed at the international airport in Douala and was cleared through customs by noon on Friday 21 March 2014. A helicopter, supplied at the last minute by the hospital to avoid the lengthy road journey, was waiting outside. Her blood flew the rest of the way to Kumbo and arrived at 14.00, just after Francisca had been wheeled into the operating theatre.
The operation was a success, and the Catholic Diocese of Kumbo found her somewhere to recuperate before flying home. Walter still marvels at the efforts of so many people – on three separate continents – to save one life, “just like the shepherd who left 99 sheep and went after the one that was lost.”
Since his blood can be given to anyone with a negative Rh blood type, Thomas could save countless lives. But if he ever needs blood himself, he can receive only Rhnullblood. If he donates a unit for himself, he has to permit it to be used by anyone else who might need it.
This leaves Thomas dependent on other Rhnull donors. But of the other 40-odd people known worldwide with Rhnull blood, only six or so besides Thomas are thought to donate. And they’re all a long way away: their locations include Brazil, Japan, China, the USA and Ireland. The reluctance to donate is perhaps understandable, but it places an added burden on the people who do give their blood. It’s also probably why Thomas, when Peyrard and I met him in Lausanne, greeted us with mild amusement. “Is it interesting to put a face to the bag of blood?”
Over tea, he described the impact of his blood on his life. As a child he couldn’t go to summer camp because his parents feared he might have an accident. As an adult he takes reasonable precautions: he drives carefully and doesn’t travel to countries without modern hospitals. He keeps a card from the French National Immunohematology Reference Laboratory in Paris, confirming his Rhnull blood type, in his wallet in case he is ever hospitalised. But one thing that is in his blood – and that of almost everyone growing up in the shadow of the Alps – is skiing. Abstaining seems to have been an option he never even considered.
The only apparent health effect he experiences is mild anaemia, which is why he was advised to donate twice a year instead of four times. Intriguingly, one doctor once asked whether he has a quick temper. In fact, the opposite is the case: “I am very calm. If it’s just my personality or if my blood has an impact or not, I don’t know.”
On the whole, Thomas is laid back about his ‘condition’. “I don’t have a problem like haemophilia that has an impact on daily life. In that sense, I’m lucky. I’m glad also that when I was told I had this special blood, they told me it’s okay to have children. I was allowed to have a family, so I’m happy.”
Donors like James and Thomas never learn what has happened to their blood – and haematologists don’t fly across borders to express their appreciation. But on this day, as we sat in a room full of spring sunlight looking out at the hazy white-flecked peaks, Peyrard told Thomas that his blood had saved lives. Just recently, a unit was sent back from France to Switzerland for a young child who would otherwise have died.
On one level, Thomas’ blood does divide him from the rest of us. On another, as the French philosopher Simone Weil observed, every separation is a link.
And Thomas’ different blood has given him the odd unexpected perk. When he was due for conscription, the doctor who first told him about his blood – Dr Marie-José Stelling – wrote to the army saying it was too dangerous for him to do military service, so he was exempted. Over the course of the past 40-odd years, Thomas and Stelling have developed a particularly close relationship. Last year, she joined him and his family and friends to celebrate his 50th birthday party on a boat on Lake Geneva. “She was very kind,” Thomas says. “She saw the human aspect of being Rhnull – not just a bag of blood.”
*Name has been changed.
When Susan Bratton watched helplessly as her close friend succumbed to a brain tumor, she knew what she had to do–launch Savor Health.
Savor Health offers nutritional counseling, curates nutrition research, and provides home-delivered meals to people from first diagnosis to survivorship.
Bratton spent 20 years as a healthcare investment banker on Wall Street before considering this venture. “I left my job in 2010,” she said. “But, I had to delay the official launch of Savor Health because my father was diagnosed with cancer. He made a remarkable recovery.” Her company has since made remarkable growth by addressing the shortcomings of the medical community.
“The medical community’s answer to weight loss while treating cancer was to eat anything with high calories,” Bratton said. “They said ‘eat what you want’.” But, she realized that proper nutrition improves cancer issues like side effects of cancer treatments.
Bratton said she saw a big change since her company was launched in that nutrition really does matter. Bratton predicts further expansion of Savor Health into the diabetic market.
“Ninety percent of the people we serve are caregivers, not patients,” Bratton said, explaining that patients are so tired with treatments; it’s left to the caregiver to plan meals. “Savor Health is a tremendous resource for caregivers,” she said.
Bratton said Savor Health has helped many people survive cancer through nutrition counseling and planning. “We had someone who underwent cancer treatments who is now a survivor. He believes our meals helped him,” she said. “He sends us photos of his puppies. We consider him part of the Savor Health family.”
An elderly woman was being taken care of by her husband until he started developing health complications of his own, Bratton said. Their daughter, who is a busy career woman, contacted Savor Health to help in delivering meals and in counseling.
During diagnosis and treatment, more people need home-delivered meals, but as they become survivors, they stay for ongoing counseling relying less on home-delivery service because they know how to plan menus, according to Bratton.
“Our mission is to help cancer survivors and their caregivers by getting nutrition off their plate when caring for themselves or their loved ones,” Bratton said.
Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.
The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.
Risk factors for PTSD will sound familiar to family caregivers. They include:
- Living through dangerous events and traumas
- Seeing another person hurt, or seeing a dead body
- Feeling horror, helplessness, or extreme fear
- Having little or no social support after the event
- Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home
You can learn about the symptoms and diagnosis of PTSD on the NIMH website.
If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.
Here’s what some of our veteran caregivers have to say about PTSD:
After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.
If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.
After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.
Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.
Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.
I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.
I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.
I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.
I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.
What should you do if you feel you have caregiver PTSD?
The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.
If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.
Some comments have been edited slightly for clarity and grammar.
Over the past few years, my family has been involved with my grandmother’s battle with Alzheimer’s. I painted this portrait as a representation of her decline.
Nancy Jane, 2015
Oil on Canvas
16 x 20 in.
graduated from Texas A&M University-Commerce in December, 2015, with a Bachelor of Fine Art degree in Studio Art with an emphasis in painting. She has been accepted into the University of Houston’s Master of Fine Art program and will begin in the Fall of 2016. Her work is primarily two dimensional, focusing on painting and drawing. Currently, she is residing in Bellville,TX.
Learn more about Madison and see more of her work at madisonluetgeart.com
The following is an excerpt from Unexpected Gifts: My Journey with My Father’s Dementia.
My dad, Reuben Soldinger, was ill for nearly two years. His mind was confused about many things. Sometimes he thought he was at a hotel, not in a nursing home. Often he didn’t recognize my mother. Some days, he thought his son was his brother. But he was so much more than his forgetfulness. He was clever. He maintained a sense of humor. He still had a sense of amazement. He remained engaged in life.
His confusion defined his existence. He knew he was confused at least half of the time and wondered what he could do about it. He looked for the train, or he tried to do his job, or he gave a speech. But confusion was where he lived. He didn’t know his age, the year, or his surroundings, but he did know that he could still have an impact on things. He knew it until his last days.
On this path he went forward with his heart. His mind no longer shielded him from feelings that he didn’t want to face. Every emotion was authentic. There was truth in his interactions. Each moment was new, but it was also full of love, anger, or fear, and he had to travel through it.
Through this journey with my father I have been transformed. I walked the narrower path of being awake to the present moment. Before his illness, I had a very good relationship with my dad. Yes, it was laced with dramatic strife in my teenage years, miscommunications as adults, some disagreements and sometimes a lack of real understanding; but mostly he was my primary source of support and my loving guide for how to be in the world. Our relationship, as is true in most relationships, relied on past history for understanding each other. As this information became less available during his illness, I had the opportunity to see and hear him differently. The pain and the tragedy of it all was there, but so was the heart’s ability to love, and the ability to see and hear his spirit, and this became the avenue for many unexpected gifts.
Dad changed. And he grew. Growing happens all throughout life, even at the end. I recognized his spiritual and emotional shifts and asked many questions along the way. How does one walk with someone who doesn’t function within the social norms? How do I see to the needs of my beloved parent? And most important, how can I accompany him?
Accompanying Dad on this journey has been an honor. This writing is a tribute to who he was as a human being and a tribute to the growth that happens in every moment of life.
Thank you, Dad.
Eve Soldinger changes lives nationwide as a popular teacher, workshop leader, and practitioner of Medical Qigong, acupuncture, and Chinese Medicine. With Unexpected Gifts, Eve brings her transformative energy to open up new ways of understanding aging parents, caregiving, and loved ones with dementia. For more resources and information on speaking or workshops, visit www.evesoldinger.com.
A traumatic brain injury is a game changer in life. We are now seeing a lot more attention devoted to brain injuries in the news and in health care due to the high profile athletes who are suffering from traumatic brain injuries, and for sake of readability referred to as TBI’s. Now we see a lot more discussion about the hard hits football players get in the game, and their plights are often publicized. As a result we now are getting more information out to the general public. But TBI’s do not just happen to football players and star athletes! They occur all the time in a wide variety of occupations and of course in accidents.
I would often think about how life would have turned out for me if Traumatic Brain Injuries were not in the mix of my experiences. It is hard to imagine at this point, because I am nearing 60 years of age and life has been eaten up with living with what I was dealt.
One thing I can say is that I gained a lot of understanding through my experiences of the issues facing people who have survived head injuries. Because the experiences I had were so life changing and often could not be described in words, I would understand patients who couldn’t quite voice their feelings either.
My father told me that success for a citizen of this world was to have a large bank account and a very good position with a lot of clout and a huge retirement fund. But I have found that success is better measured in how effective I am in helping someone recover from the impact of an accident or health problem that brought on a TBI and how my ministrations were effective in getting someone back up on their feet. But I was woefully ignorant of all of the issues that result from a TBI and I had survived two at a relatively young age. I assumed that the results were the same for everyone who survived one. That was a terrible assumption! It hampered my ability to help a few people effectively in the first five or six years of being a voluntary caregiver. Fortunately for me, I learned fast and adjusted course and I became more aware of individual differences, reactions and responses to what a patient might be experiencing.
I reacted much differently than my father expected. He had high hopes of my taking over the family farm and also running his outdoors sporting goods business and carrying on his legacy. But he removed that plan in from my future at the time he lost his temper (a frequent experience during my childhood) when I was just thirteen and swung a push broom at arms length to connect with the side of my head sending me into the air and flying sideways and ending a split second later with my landing half in the kitchen sink. He had often complained that I was as hard headed and stubborn as my G–D— mother, and I half believed I was hard headed as the blow to my head should have killed me. If that had not been enough he had beaten all desire out of me a few years later with his fists when I sold a job in our gun-shop a little too low for his tastes and I ended the day with my ears ringing, eyes swollen nearly shut and some very terrifying thoughts that I would not survive to adulthood.
Thanks to a very goodhearted couple I escaped and started a new life in a different town working for a sporting goods store in the hearts of the prime fishing lakes area of Minnesota. That life of new happiness was cut short when I was riding with a friend at age nineteen and a priest who had enjoyed a little too much sacramental wine ran a red light in front of us and we collided with him rolling at better than 35 miles an hour. Our compact car crumbled like a cheap tin can when we hit the big Plymouth Fury III the priest was driving and I went through the windshield. So at age nineteen I was dealing with the effects of not one TBI but three, and each had crippled me a little more.
The cumulative damage was too much to handle all at once and I found myself trying to adjust course and just stay on top of life. It seemed at the time that I would go through a time of convalescence and recover and go to work full time and still realize my share of the American dream. Well! I was naive! TBI’s can haunt a person for the rest of their life.
My experiences with TBI did not end with those three incidents while I was a teenager. I went on to have several construction accidents and I had a pesky heart and blood pressure problem that seemed to crop up from time to time. It was during the times that I dealt with strokes that I learned that a stroke in the brain is also a TBI because it does cause a traumatic brain injury. I was blessed to have moved to New Mexico to work and live and I was very committed to ministry as a pastor and an evangelist. In the tasks of being a pastor and assisting members of the churches I was often called on by parishioners who had experienced accidents or strokes or were caring for a family member who had experienced a TBI. I gained a lot of knowledge through hands on caregiving and experience with dealing with the needs of those people who came to me in need of assistance.
Thérèse and Pierrot laughed together until his last day. It was their way to take care of each other, laughing and smiling. More than 30 years of Love.
Martine Côté is a photographer in Quebec City. You can see more of Martine’s work on her website, Facebook, or Instagram.