To better get what the hell it is I’m sounding off about, I’ll set the scene from fifteen year’s ago before the Parkinsonian sea engulfed us, before my husband declared himself trapped alive inside a sinking wreck.
I glanced up. Sitting in our living room, the fireplace spluttering pinon sparks, I moved the fireguard against the adobe orifice and settled back. Newsnight, a program my husband loved, glued him to the screen. Words tossed tired leaving the great big world unchanged. Not ours, though. Ours morphed that night, the night I noticed…
My husband David’s cheeks smooth as the TV screen, the corner of his lips devoid of curl, his eyes saucer round, nodding at the key points being argued in the interview, I assumed he was taking it all in.
Charlie Rose leaned forward, bushy eyebrows pulled close and down mantling personal thoughts. A smile disrupted the furrowed lines demarking his cheeks. He pushed his lips forward. It was easy to see Charlie was engaged. But my husband — was he engaged? His expression gave no hint. I picked up a cashew fragment from my lap, cast it with the doctor’s words into the flames. “Swaha,” I sighed. “Here’s to all we have this minute.” The fire-log like our future incinerated leaving only the present.
David looked the same as he did yesterday, the same sweet way he’s looked for the years we’ve been together, the same physically since his ten o’clock doctor’s appointment the previous morning. (Was that only thirty-six hours ago?) David’s face: Charlie Rose on the box. I looked from one to the other. Studied the contrast.
“You have what’s known as a Parkinson’s mask, an early symptom of the disease.”
The doctor’s words un-rumpled a list of symptoms…joint stiffness, tiredness, micrography, tremor, fears we’d scrunched inside. For a couple of months I noticed his voice. Its new sexy huskiness. And teased him. Then not so long ago, speed walking our favorite circuit behind his house, he stopped, waited for me to catch up.
“My left arm won’t swing,” he complained. “I wonder. Could I have I had a mini stroke?”
Next day at the doctor’s office, the doctor clicked his ballpoint pen. On. Off. On. Aligned the missile shape of it parallel between the two top lines of his notepad.
“You have Parkinson’s disease.” The clicking of his ballpoint spiked the silence.
The three syllables “Par-kin-sons” skimmed the surface of reality and sank beyond my conscious thought. The doctor’s words were just sounds, nothing meaningful about them. After all, the sky still shimmered cloudless, and the smudge grazing the horizon too far distant to define. I was too shocked to ask what lay ahead. Stepping from office to sunlight, we held hands, not talking. I closed my eyes felt the warmth of the sun.
Bloody ironic, David a doctor. All those nights slaving in the ER cranking extra dollars to live the poster retirement under a palm tree somewhere. Now just when he was free…
I didn’t burst into tears then. It took a week. Walking one early morning along the arroyo behind our house, I brushed against a cactus. The cruel pain of its barbs gave me reason. Broke my reserve. I wept and wept. If David cried, he cried when I was not about.
Caregivers, did you stiffen your spine like me on hearing your partner’s diagnosis? “Pointless dissolving into a crybaby…pull yourself together, girl,” I admonished myself. “Face what needs facing and bloody well get on with it.”
I didn’t admit to my feelings. I couldn’t. I didn’t recognize the nothing I felt covered emotions I was not strong enough to handle at that time. It’s a British thing. Denial. Our way of coping.
“Let’s take a trip. Go on an exploration.”
So we hiked into the desert silence of White Sands and lay together beneath the Milky Way and swam the waters of Elephant Butte. For two and a half months we toured Sri Lanka, and clocked ourselves into a Kerala nursing home, South India, to undergo a month’s Ayurveda treatment, then took six weeks in a half-built ocean resort recovering. It was a beautiful time, we agreed, riding waves twenty feet high in the Indian Ocean, strolling the Malabar coast hand in hand, eating vegetarian. We never looked or felt so healthy.
The future, not yet existent, nosing into the past kept us warm and down-coated. Nesting, we called our “do-you-remember-when-we…” stories.
But “Par-kin-sons” was there, three stones lying below the surface. Dark lumps on the pristine sand, one, two, three… I could see them through the water. Behavioral and physical changes like his indecipherable writing, more frequent stumbles, fading memory, curving posture, loomed unavoidable.
What David felt, he kept to himself.
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
“Nothing can prepare you for the loss of your child”
I’m positive that this is true. I’ve heard these words from so many parents who have lost their children. Even though I haven’t experienced this loss personally I know with everything that it is true. There is absolutely nothing in this world that can prepare you for the loss of your child.
There are many different ways people grieve, and for many different reasons. Grief doesn’t always follow losing someone we love. When my son was diagnosed with a fatal disease called Canavan I realized in hindsight that I went through all the stages of grief. I had suffered a profound loss. Even though my son was still with me I was grieving the loss of the heathy child I could never get back.
After coming to terms with the diagnosis this feeling of grief eventually faded away. But grief comes in many forms. There is something called anticipatory grief which can affect parents like me who have seen so many others in the same situation lose their children. We mourn with these other families and silently wonder if we’ll be next.
Even though I know there is no way to mentally prepare for losing my son, I still can’t help but try. There are endless poems and blogs dedicated to child loss. And as my son grows older and I watch more children lose their battles, I always read everything people share about losing their children. I read their words because I feel terrible for their loss and I want give them the chance to be heard. I also read the words of grieving parents because I know that one day this will be my reality as well. I can’t even estimate how many times I’ve read something about someone else losing a child and had to stop because I couldn’t finish it without breaking down in tears. The agony and sense of loss is palpable. These parents are in so much pain and they are so articulate that I can actually feel every word they have written deep inside my heart. This is empathy, a typical thing to feel when you read something so emotional that it moves you and you can feel something very similar to what the author is describing. This is very different from anticipatory grief.
Anticipatory grief is the experience of grief before an impending loss. This is a different form of grief and it can become crippling. How can we possibly go on day to day caring for a child we know we are eventually going to lose and not be affected emotionally? I have absolutely no idea, this is something that I struggle with on a daily basis.
I have been raising a child with a life limiting illness for over nineteen years. I know a lot about so many things that we as parents of medically involved children become experts on, but not this. I can not seem to escape this feeling of dread. There are times when I can actually feel the aching emptiness of not having my child.
My son almost lost his battle with Canavan disease this winter. This was the first time he’s been really sick. I watched him turn blue and stop breathing on half a dozen occasions. I begged him to fight, to stay with mommy. I verbally rescinded his permission to leave me when his earthly struggle became too much for his little body to bear. I told him he was not to go with any children that were there as angels to guide him to heaven. I told him to run from the angels, to run as fast as he could the other way. I begged him not to leave me.
When the time came to let him go I couldn’t do it. I’m wondering if I’ll ever be able to. I think about this now every single day. I have to stop what I’m doing at least once a day to cry and mourn someone who is still alive. This can’t be healthy, but I can’t escape this feeling of anticipatory grief. I feel like the grim reaper is following my child around. I got much too close to death during that illness, I felt him in the room with us. I will never be able to unsee my child teetering on the thin line between life and death. Some things change who we are fundamentally, and there is no going back to who we were before.
I don’t really know how or why my son survived this illness, but he did. Everyone agreed that this was a true miracle. But how many miracles can we expect? I’ve been gifted with more time. I know that I should make every moment count, but that is easier said than done. I already know I should be focusing more on the time we have left, living in the moment and all that. But sometimes I get consumed with this grief and instead of trying to escape it I welcome it in. Why would I do this? I think to try and prepare, even though I know that is impossible. Our mind has it’s own defense mechanisms to try and prepare us for something emotionally devastating. I think that feeling anticipatory grief is part of something to prepare me for the day I will eventually bury my precious child.
I’m not sure if I’m supposed to talk about these things, these horrible feelings. But I do know that ignoring it won’t make it go away. So I try to take the mystery away, it has a name, anticipatory grief. It’s a real thing and I know that I can’t be the only person who feels like this. Each day gets a little bit easier. More time and distance between the hospital stay does seem to help. And I do know that every single second with my son is a gift not to be taken for granted. So feeling anticipatory grief has been relegated to the times when my child is not at home. I get all the feelings out of the way so I can focus solely on him when he’s by my side. This is a new learning curve for me and I am still finding ways to cope with this feeling, a feeling that can be destructive if I let it. But I won’t do that. I will love my son with every fiber of my being for every second I have him with me and continue to memorize every detail of how he feels in my arms. I know that I need to store up these memories because this glimpse into the future is a reminder to me that our time on this earth is fleeting and we need to make it count.
As I continue to process what it means to be a caregiver and meet countless others who share similar experiences, I can’t help but see a badge of honor adorned on their chest. No, it is not a medal bestowed to us by other mortals, but a badge bestowed from a higher power. You will actually never see this badge, as it is tucked securely behind flesh, blood and bones; the heart.
Caregivers have a heart others wish they could obtain. An unbounded heart, spilling an endless flow of love toward the ones they care for. The terrors of caregiving are difficult for most to face, a reason why we, as caregivers, can feel shunned from the rest of the world. But we don’t turn away. We walk right into the terror with no idea why and no idea how to fix it but knowing we are called to do it.
When I meet another caregiver, a sense of solidarity overcomes me, like I have found a lost comrade in a war we cannot win. I feel connected. We share our metaphorical scars as a way to connect on this event in our lives. I can’t get enough of hearing the stories of others and sharing in the common experience we all must face.
I wish there was a way for us to identify ourselves to the world, to remove our hearts from our chests and wear them outside ourselves so that others can see what we are. As I see people in my daily life, I wish I could see this badge, flag them down, share our battle scars and embrace in a warm hug. Don’t be afraid to share your struggle because there are brothers and sisters who share in this experience and they are here to help. We are not alone in this fight, and though we may not win, we will not be defeated.
I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.
Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.
It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.
Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.
One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.
Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.
That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.
I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.
The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.
But there’s a solution.
We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.
We can still do that.
If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.
If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.
If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.
If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.
Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.
We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.
We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.
Let’s leave the political arguments for another Facebook page and get back to supporting each other.
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Florida woman experiences the ultimate heartbreak after she tries to sell her wedding ring
When Megan Starich showed up to exchange her treasured wedding ring for several thousand dollars, she thought she had done everything right. The Florida woman decided to sell the $5,000 ring to help pay for her husband’s medical bills, which stemmed from a 15-foot fall at work. Watch the video “My husband fell 15 feet onto… (more…)
Every day, hundreds of Israeli volunteers drive ill Palestinians from the West Bank and the Gaza Strip to hospitals in Israel. Shaul Adar joins them on the road and learns why they see their neighbourly help as a step on the journey to peaceful coexistence.
At 6.30am, the Eyal border crossing is a picture of human misery. The official name is “border crossing”, but nobody uses this term. Israelis and Palestinians alike say “Makhsom” – meaning barrier or roadblock – which reveals the psyche of movement between Israel and the West Bank.
Thousands of Palestinian workers, mainly men, who have made it through the rigorous security check via steel pens, are looking for a bus, pickup truck or employer that will take them for a valuable day of work inside Israel proper. The narrow road leading from the crossing to the main road and on to the centre of Israel is gridlocked. Israeli police and border patrol are watching from a distance while it seems every traffic law is disregarded. It can take hours in overcrowded conditions, facing petty tyranny from the guards, and there is no guarantee of being allowed to the other side.
Behind rows of buses is a policeman from the Palestinian Police Force and Leila, his three-year-old daughter, who suffers from high blood pressure. They are on their way to Tel HaShomer hospital, near Tel Aviv, for treatment for the little girl. They are foreigners in this country – from Israel’s estranged neighbours, no less. Yet amid the car engines, horns and general mayhem, the father and daughter sitting on a rock appear to be the calmest people around. They are comfortable in the knowledge that someone is coming to pick them up. That someone is my brother, Amir Adar, a software engineer, a 60-year-old Israeli citizen and a volunteer for Road to Recovery, a group of Israelis who drive sick Palestinians to Israeli hospitals from Israel’s borders with the West Bank and the Gaza Strip.
Israel has occupied the West Bank and Gaza since the Six-Day War in 1967. Although there are hospitals in the West Bank and Gaza, they are not as well-equipped as the ones in Israel. Many people with cancer, people who need a transplant or children who need dialysis have to go to Israel for life-saving treatments. While the Israeli health system is not responsible for the health of Palestinians, the Palestinian Authority pays high tariffs for any treatment for its citizens (as well as those in Gaza), which makes the Palestinian patients welcome and valuable guests. The problem is getting them into Israel, and to the hospital, in the first place.
Today, both the West Bank and Gaza are fenced and Palestinians require a permit to enter Israel. There is some cooperation between the Israeli government and the Palestinian Authority, which runs civil matters in the West Bank, but the Hamas movement, which controls Gaza, is committed to the destruction of Israel.
Following the collapse of the Oslo Accords and peace treaty in the 2000s, the short journey from Gaza to an Israeli hospital is now a Herculean task. Sick Palestinians need to see a local doctor, who will refer them to a specialist, who then may ask to send them for treatment in Israel. From there, the Palestinian Authority Health Office will need to authorise it, get a permit from an Israeli coordination officer, find the right hospital, and send a commitment to pay the bill. This process alone can take weeks or even months.
With relationships between Israel and the Palestinians at a nadir, each case is scrutinised by both sides. To get the permit to enter Israel, Palestinians may be asked to work for the Shabak, or Shin Bet, Israel’s internal security forces. This makes any travelling patient a suspected traitor in local Palestinian eyes, while equally the Israelis fear a breach of security. The patient is only allowed one person to accompany them and that person must be cleared by the security services. Many, mainly young men, are not allowed in, so the burden falls on grandmothers and grandfathers to put a child at ease. Each journey in and out is a long haul of bureaucracy, checks and border crossings, and fear of being in the wrong place at the wrong time.
Palestinian patients make their way to the crossings from the West Bank and Gaza, clear all the checks, and then need to make the much longer, expensive and intimidating way across Israel. This is not a time when a Palestinian can feel safe inside Israel.
This is why my brother is here today.
Ordinary volunteers like him take sick Palestinians from border crossings to Israeli hospitals and back again. Without them, patients like Leila would have no option but to take a taxi into Israel, which is too expensive for most Palestinians. Road to Recovery’s 500 volunteers provide them with a free ride and the company of an Israeli to ease their fears.
Thanks to the morning rush hour, the 30 km drive takes three hours. The journey takes us through some of the most affluent neighbourhoods of Israel, a world away from the living conditions in the West Bank, and, traffic aside, there are no further problems or delays. “Shukran,” says the father warmly (thank you in Arabic). “No thanks needed,” answers Adar in Arabic. “It is my duty. It’s also an opportunity to brush up my Arabic.”
It is dawn the next day. I am at Rambam Medical Centre in Haifa, in the north of Israel by the sea. In a battered white Citroen people carrier named Junky are two girls from Gaza, and one mother and one father. The driver is Yuval Roth, the founder and engine behind Road to Recovery.
The 60-year-old white-haired Israeli is a semi-retired maker of stilts for performance artists, a former juggler who taught generations of Israeli jugglers, and son to a Holocaust survivor father. In 1993, he lost his brother Udi, who was kidnapped and shot by a Hamas unit on his way back home from a reserves service in Gaza. Roth’s reaction was to join the Parents Circle – Families Forum, a joint group of bereaved Israelis and Palestinians from the West Bank and Gaza. There they can share their pain and discuss ways to improve the situation.
In 2006, he was asked by Muhammad Kabah, a fellow member of the forum, to drive his brother for cancer treatments in Israel.
“For me it was just like a helping a neighbour,” says Roth, when he starts the 160-km journey south to the Erez crossing into Gaza. “I’m from Pardes Hanna and he is from a village near Jenin. There is a border between us but we are still neighbours. That was the start and then I had more requests, so I’ve asked for help from family and friends.”
Roth began driving sick Palestinians on a regular basis, with others soon joining his cause. Word of mouth spread, and six years ago Roth received a donation of US$10,000 from the singer Leonard Cohen, and Road to Recovery was born.
“His donation pushed me to found the trust and enabled us to increase the number of volunteers,” he says. The resulting media coverage has brought the organisation to the awareness of like-minded Israelis and in 2015 it was able to make more than 8,000 patient trips, covering over 550,000 km, with an operating budget of 570,000 shekels ($150,000). The proposed 2016 budget is double that, at 1.17 million shekels, raised largely from donations from Israel and abroad.
The greatest sacrifice the volunteers make is not the missed sleep, the snail’s pace of their drives or the waiting. It is losing the option to turn a blind eye to suffering. While most Israelis don’t want to know about the hardship of Palestinians, let alone sick Palestinians, Road to Recovery volunteers are brought face to face with the misery of the conflict’s most vulnerable people.
“I do it for many reasons,” says Adar. “First, to help people who need it the most. For me it’s not a tall order, nothing too demanding. It’s also a political act and I want to set an example for my children. This is the place I’m living in. If I close my eyes the problem will still remain. For any chance of an agreement in the future we must have a better day-to-day life right now. I owe it to myself as a human being not to sit idle.”
These are the last days of spring in Israel. Jacaranda trees are in full purple bloom, huge flocks of storks and pelicans are making their way back north to Europe, and the hills are still green before the harsh summer will turn them dry yellow. But the land is under a cloud. The relationship between Israelis and Palestinians has been deteriorating constantly since the breakdown of the Oslo accords, and today it is arguably worse than ever. Most young Israelis and Palestinians have no opportunity to meet each other; fear and hate are the prevalent feelings.
These are the days of incitement and a poisonous atmosphere. In April 2016, Bezalel Smotrich, a right-wing member of the Knesset, the Israeli parliament, said that he would not want his newborn child to be taken care of by Arab staff at an Israeli hospital. The remark revolted many Israelis. Israel is a highly divided society but the fact that an active member of parliament would say such a thing was shocking. The Israeli health system is supposed to be a meritocracy, with many Israeli-Arab doctors and nurses. Jews and Muslims and other minorities are meant to receive treatment without discrimination.
“Indifference drives me mad,” said Arnon Rotbart, 51, a lawyer in Tel Aviv, and a fellow Road to Recovery volunteer. He wishes the Israeli public would give more thought to the living conditions of Palestinians. “These people need help,” he told me when we met in his office. “They can value the goodwill of Israelis to show compassion and empathy and they can spread it around them. The hateful, aggressive approach, the utter indifference, is something that I want to make a stand against. When a member of the Knesset says that he doesn’t want to be near an Arab baby in the maternity ward because in 20 years time that baby will grow up to be a murderer, I want to ask why we won’t give that baby the tools to be our friend.”
I also met Road to Recovery’s coordinator with Hamas, who did not want me to publish her name. Her day job is in a factory, but in her spare time she works with Road to Recovery because, she says, every child deserves medical treatment and shouldn’t pay the price for the conflict. “I feel that Israel is responsible for the condition in the Gaza Strip, the hospitals and the lack of facilities. I can’t ignore it,” she told me.
I ponder this in the back of Roth’s car, as I talk with Maisa, the mother of Lian, a three-year-old girl. They live in Rafah, in the south of Gaza. The girl has had a liver disease and had to undergo a liver and kidney transplant. “I did some tests in Rambam and I was found eligible to donate a liver lobe. It was a very easy decision for me,” says Maisa in fluent Hebrew. “First she had the liver transplant and later the kidney and she is, praise God, all right. I’m also, praise God, well. We come every month or two for a check-up or if there is an emergency.”
Roth is driving the children to the border – the Eyal crossing – so they can get back home to Gaza. That is relatively far away from Haifa or the West Bank – a taxi would have cost the families around 500 shekels. A journey to Haifa from the Gaza border can last six hours, including inspections, but Maisa says that recently it has become much better. “We only have to go through a security check once. The staff at Rambam are very good to us. For me, it’s like a second home. We lived there for three years, and it’s like a family to me now. They give with all their hearts with true love to children and parents. They wake up in the early hours and they do good for people, for sick children. I’ve never heard of anything like it.”
As our journey to Rambam goes on, Roth’s two phones ring every few minutes. The garage is calling about a repair for his other car, Muhammad Kabah is looking for work, and there is a barrage of calls about a juggling festival Roth is organising in the next week during the Passover vacation.
“I used to be a mediocre juggler but I’m proud to say that I’ve raised generations of wonderful Israeli jugglers,” says Roth. “Everybody can be one and I taught many who became world-class. The key point is to throw the item correctly to the right place. Yes, gravity will bring it down but much later then you think. If you throw it right you make more time for yourself. So don’t panic! Once you understand it there is no stress and you can juggle away.”
I ask how many balls are in the air running Road to Recovery. “Today it’s about seven,” he says. “Manageable.”
The other girl in the car with us is Afnan, a charismatic nine-year-old from Gaza City. She is perhaps the organisation’s best-known patient, following an Israeli TV piece two years ago about the 2014 conflict known as Operation Defensive Shield. Afnan, then bald from cancer treatment, was on her way back home from Haifa with her father when, following a Hamas missile attack, the roads and crossing were closed. Staying in Haifa was the safe option, but Afnan was homesick after not seeing her mother and brothers for nine months.
The decision to turn back led to tears and heartbreak as Roth – also the driver that night – ended up detouring to Kibbutz Hatzerim near Beersheba, 200 km south of Haifa, where he grew up. With Israeli Air Force jets taking off from the nearby base on their mission to bomb in Gaza, and Beersheba targeted by Hamas rockets, Afnan met Israeli kids her age in a shelter. It was surreal. “They show that TV programme at universities now, in courses about conflict solving,” says Roth. “After just a few questions about the conflict, the kids started to play with her normally. Kids are clean, not yet corrupted by hate, and we need to learn from them.” A few hours later, the crossing opened and Roth was able to drive Afnan and her father to their home, albeit to a war zone.
8am, near Jaayus
Halfway to the Erez crossing, on the motorway to avoid the metropolis of Tel Aviv, you can see the olive-tree-covered hills of Samaria on one side and Greater Tel Aviv on the other, with the barrier, sometimes fencing and sometimes the infamous wall, separating Israel and the West Bank. I peer out the car window to the east, where, just a few kilometres away, is the village of Jaayus. Two days ago there, I met Naim El Beida, Road to Recovery’s Palestinian coordinator for the West Bank. He, alongside Roth, is one of two indispensable people to the operation.
El Beida works as a building site manager in Israel (“I helped build the country,” he said with pride). He is always with his phone and a big black diary, organising trips to hospitals and making sure there are no last-minute problems. El Beida, a peace activist, was referred to Roth when a poor relative was looking for transport for his sick son. The father knew that El Beida was well connected in Israel and a mutual friend told him about Roth. “I immediately liked the activity,” he told me. “I believe it is the path for coexistence, without violence or wars. These two people can’t separate; nobody will take us so we have to live together.
“One patient led to another and now I don’t have a moment for my own. My number is passed from sick person to another. My wife told me, ‘It’s the phones or me,’ but because of my belief in my work and the help it provides for my people I told her it will be the phones!”
Today, El Beida’s number is available in every Palestinian hospital and with every medical secretary. He is one of the first people a seriously ill Palestinian would call after receiving grave medical news. He helps in many ways – as a translator, a fixer, smoothing out small problems that get in the way of a patient getting treatment. He sees the families before the first trip and after it. The difference is huge.
“I know that everybody is afraid the first time. They don’t believe it can happen. If during the previous week a group of soldiers come into your home and mess it around and cause havoc and a day later, I tell them, a Jew will come to the crossing and take you to a hospital, you’ll be confused. Some people have never met nice Israelis like our members. Some of them have just met soldiers and Shabak security service – only threatening Israelis. One mother came back from her first ride and couldn’t believe it. She said: ‘These are Jews? The driver spoke Arabic and bought sweets for the kid.’
“I told her that there are many Jews, some are good and some are bad, and it is the situation that caused them to be bad. In a different situation we would have met and become friends.”
“I wake up at 3am for work,” he told me and four other Israelis who visited him that morning. “I return in the evening and then start coordinating trips until I collapse into bed. It does affect the family, the kids and my health, but it is my calling. I want to sow the seed of respect between the people and help everybody that needs it.”
10am, Moshav Ma’agalim
As our car drives further south we reach the light-brown borders of the Negev desert and turn west towards the Mediterranean. After a rainy winter the colours are a mix of the red soil and the dark green vegetation. The Israelis who live here are in the range of Hamas missiles and have had their share in the never-ending circle of violence.
Moshav Ma’agalim is a small cooperative of religious Jews, and when Roth makes a stop there to deliver stilts to a customer, everybody takes the opportunity to stretch their legs. You can feel the tension. Nobody says a word but some glances are exchanged and when we make the short way to the Erez crossing in less than half an hour, everybody is relieved.
While Road to Recovery has its supporters, a common reaction is “the poor of your city come first” – the Hebrew version of “charity begins at home”. In other words, why are you helping outsiders (and, to some, their enemies)? Roth does actually help poor Israelis as well, as part of his volunteering work outside of Road to Recovery. But that saying follows the volunteers everywhere. “Among my friends there’s a lot of support, but I keep hearing that phrase,” says Amir Adar. “I almost prefer blatant racism to this. I wonder how many of them help the poor.”
Road to Recovery is politically neutral, but the vast majority of the members are middle-class Ashkenazi (Jews of European descent) lefties. Some of them were high-ranking officers in the Israeli Defense Force, others were ordinary soldiers who 30 years ago served in Gaza and chased the stone-throwers they now carry in their cars.
There are a low number of Arab-Israelis among them, but a recent TV programme aired in January on Channel 2, the most popular TV channel in Israel, brought Road to Recovery a wave of new volunteers, with new moral conundrums for Roth to deal with.
Roth received a call from the head of Israeli settlers in the Samaria region, saying that they wanted to help. “I almost choked,” Roth tells me as we drive. “I told him that I’d call him back because I didn’t know what to do. I asked other members and they didn’t understand my question – they said yes, of course we should work with them, but it’s still not clear-cut for me.”
This is the kind of dilemma you can find in this crazy region. The settlers want to help but there remains an ideological rift for Roth. “I don’t have a problem with a right-wing Israeli – I’d welcome him into the organisation. But in my world there is no such thing as a nice settler. The fact you are a settler is the problem. Thanks for your will to help but you are sitting on a land that doesn’t belong to you and that’s a problem.”
10.30am, Erez crossing
We can see by now the fences around Gaza and a big wall; yellow signs warning not to take photos of the security facility welcome you to the big crossing at Erez. Despite this, it is a surprisingly modern and pleasant terminal, and our car is allowed to park near it. The kids, Afnan and Yuval, are clearly happy to be near home. Their parents unpack suitcases and plastic bags. Afnan, with a big green Maccabi Haifa Football Club bag on her back, carries a number of boxes of Matzoth, the unleavened substitute for bread for observant Jews during the coming seven days of Passover. She gives a hug to Yuval and the two of them and their parents make their way into the terminal to be examined by the two sets of crossing guards, Israeli and Hamas.
There are three more Road to Recovery cars parked here. One of them is driven by Amram Mitzna – a former brigadier general in the Israeli army, the second-highest rank, a former mayor of Haifa, and a former chairman of the Israeli Labour Party.
Among Road to Recovery’s other members are Aluma Goren, a former captain of the Israeli national basketball team, and Eran Schandar, a former state attorney.
What a contrast, I think, to the two children I am waving goodbye to. They are the most vulnerable people. They live in the harshest conditions under the despotic Hamas regime and the ever-watchful eye of Israel’s Shabak security service.
Even the Palestinian health bodies are not too eager to help such families, according to Road to Recovery’s Gaza coordinator: the Palestinian Authority in the West Bank is in conflict with Hamas in Gaza, so the Authority is less than keen to be seen helping people from the Strip. The contrasts between the abject poverty in Gaza and the affluence of Israel, the mayhem of daily life in Gaza and the Israeli bureaucracy, lead to a constant culture clash that can drive even the most committed person into despair. Even among Road to Recovery volunteers there are moments of doubt.
I hear stories of patients’ families turning treatment areas into storage spaces while they gather donations – money, goods – mainly from Arabs living in Israel. Roth says he’s heard the stories and can understand it to some extent, as some families come from terrible poverty. “Some of them don’t have anything.”
Yes, he says, there are some times when people take advantage of Road to Recovery, and some do rile him. Like yesterday, when a volunteer drove to Rambam Medical Centre to collect a patient who wasn’t there. It turned out that the family had gone out shopping in Haifa. “They didn’t understand what we are. We are not taxi drivers,” says Roth. “It happens every now and then, but 95 per cent are people who need us and without us they could die.”
“A Gazan is like an onion with so many layers,” said the coordinator. “They will tell you what you want to hear because they attempt to survive between Israel and Hamas. I know what happens in the cars, the relationships that are formed and the understanding that we are the same. That is why Hamas opposes our actions in principle. They are willing to let it happen because they know it is a matter of life and death. But they do it with gritted teeth.” (The Israeli government is more than fine with their activities – it secures money for the hospitals, after all.)
If running Road to Recovery is juggling with seven balls in the air, cooperating with Hamas is juggling them on a tightrope over a volcano. A lethal conflict is always a possibility, and once in a while there is a breakdown in communication. The last one was over a “fun day”, when the organisation takes sick Palestinian children not to the hospital but to the beach or a festival for relaxation. Hamas deemed this a step too far and “normalisation with the Zionist enemy”. But in most cases the desperate need for life-saving treatments helps ease the tension.
11am, on the road to Haifa
After a short break, Roth collects two young mothers with a toddler each and we head north once again. It’s another 160-km journey but Roth doesn’t show any sign of tiredness. It is a quiet, calm drive, although again Roth’s phones are buzzing with calls – at any one time it could be last-minute problems at a crossing or something to do with the juggling festival. But he values the drive. He says it’s time he can spend on maintenance of the most important resource – the volunteers.
In rare cases when a patient doesn’t turn up, or when a passenger’s family is brusque, Roth does his best to smooth things over. “A week ago a volunteer poured his heart to me after he drove somebody and didn’t get even a thank you or goodbye. They just left. I do understand his feeling. There are people like that but I try to remember we don’t know what they’ve been through at the hospital.”
Sometimes people get too involved. They form a bond with a family, and expectations that may not be met. By the nature of their work, volunteers have to deal with dramatic situations, such as when a nine-year-old boy with cancer had an infection and a high temperature. He had to go for emergency treatment in Israel, but could only go with his grandmother. The boy, fearing for his life, cried that he wanted to die with his mother by his side. Her permission arrived at the last minute, when the boy was at the crossing, allowing the mother and child to travel for the treatment that saved his life.
Naturally, there are also deaths, many of them of children. Road to Recovery volunteers may visit the bereaved. In some cases the relationship forged during the treatment is strong enough to be maintained even during and after a death. As Roth tells me, “We try and visit bereaved families and we are told, ‘Though our child has passed, it doesn’t mean we have to end our relationship.’ When it comes from them, it does give you strength despite the sadness.”
A long day’s work comes to an end as we pull in one last time to Rambam Medical Centre in Haifa. The two mothers and kids complete the journey and check in.
In a perfect world there would be decent hospitals for the Palestinian people. In a better world the Israeli hospitals and the Health Ministry would take care of the crossings and transportation. In the real world it’s up to Yuval Roth and his group. Roth’s next hope is to make Naim El Beida a full-time West Bank coordinator with an office. “That is the dream and it will make a huge change,” says Roth. “In the meantime our job is to drive the needy and by that to create a little hope, some pockets of a better future.”
Some names have been changed.
Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006. “Everybody thinks that we are just a medical problem,” Mittler told his audience. “People… (more…)
John was a highly successful civil engineer and a loving husband. He was by nature a real go-getter. And so when his wife was told that she would need complicated heart surgery for a dysfunctional heart valve, he went into full throttle. They arranged to have her surgery at the best cardiac hospital in the country. They flew to the Midwest for what they thought would be a few weeks’ stay—a few days to settle in, a lengthy surgery, and then two weeks for recovery and rehab. The plan was for them to return home where Linda would undergo an intensive program for cardiac rehabilitation in order to get her right back to her active life. John did his homework, learning about the possible pitfalls of this surgery, and figuring out how they would overcome each one.
But things didn’t go as planned, and Linda’s post-operative course grew more dire by the day. At two weeks, she remained on the breathing machine, one complication after another plaguing her recovery. John was at the bedside day and night, pacing the halls, begging for more information, reading all that he could about the complications that were arising and possible treatment options. He asked to join the doctors’ rounds every day and stood with them as they pondered the various causes of her deterioration. As they scratched their heads, he scratched his. As they discussed medication side effects, he suggested new ones to try. John loved his wife and he would do anything to save her.
Yet Linda continued to steadily decline, and by the time a mutual friend pulled me in for advice, it was obvious to me that she was dying. But when I spoke with John, I realized that he had no idea. He had been so consumed by the drive to cure her, come what may, that even though he understood each problem as it arose, he couldn’t see forest for the trees. And the doctors, his only guides through this terrain, had not told him. Rather than honestly delivering difficult news, they had supported him in his grief-stricken efforts to keep up the fight. Even when they must have realized it was lost.
John had asked for everything that he thought could possibly help his wife, and he had gotten almost all of it.
Most doctors, particularly those in the ICU, are trained to “do everything,” medically speaking. That means that as bodies begin to fail, we automatically reach for the machines and catheters that sit idling in the wings, using them to prop up organs, resuscitate hearts, breathe for failing lungs. These tools are truly miracles of modern medicine—many thousands of lives are saved by them every year in ICUs around the world. Yet when used on bodies that are truly dying, there are serious drawbacks. The number of overly mechanized deaths is rising. The statistics are staggering– 30% of people in the US die either in or recently discharged from an ICU. Many of them are on machines until their last breath or heartbeat, encased by machinery, separated from their family, and far from home. And this is not the way that most of us, when asked on surveys, would want to pass from this world.
How can this be happening? Why aren’t we reserving these powerful machines and treatments for cases where they have a good chance of helping? Why are we routinely treating patients in ways that go against common sense and stated preferences?
The answer is more complicated than it might appear. The physician, who is the de facto guide for medical decision-making, was trained in a culture which highly values the tools of our trade. Doctors are imbued with a sense that caring is best demonstrated through concrete action. More important, this same training did not prepare us for the breaking of bad news or the ability to recommend switching goals of care to a focus on quality of life as opposed to life-prolongation. We are poorly equipped to handle emotions of sadness or anger from our patients or their families, and see those responses, and the prospect of death in itself, as a sign that we have failed. And so we are inclined to just keep treating, instead of processing and reflecting on next steps, even after the trajectory has become painfully clear. Many of our patients therefore end up riding on what I have come to call the “End of life conveyor belt,” where their dying bodies become progressively dependent on our technologies and treatments until they die, attached to machines in an ICU or ventilator facility.
Within this shaky environment, the attitude and behaviors of patients and their families can have a big impact, whether exacerbating or productive, on the problem. The truth is that the doctor will take a lot of her cues from your behavior. Maybe it shouldn’t be that way, but I believe it’s true. We all want to believe that there is one “right” treatment path, and that it will be followed and tweaked along the way by some scientific formula, but the reality is much more human than that.
In times of stress, many of us appreciate marching orders. And the doctor is no exception. A clear directive can be a comfort, even if it has become outdated. Parsing out a patient’s preferences, current and future within various “what if” scenarios, wrestling with medical uncertainties, or moving a hopeful family into a more realistic place can be difficult, and at times, overwhelming for a physician. Research shows that it takes time and continued effort to help patients and families absorb bad news. And there is much difficult emotion to be faced by the doctor along the way, including anger, disappointment, and blame, something we are not well-trained to manage. And with a competent and eager surrogate like John on the case, who was committed to “doing everything,” it is disturbing but not surprising that the course was set at full throttle without re-evaluation.
But the good news is that doctors are also responsive to a different kind of messaging from patients and their families. If given permission, they are much more likely to give their honest assessments. If you want realistic information from your doctor, go ahead and ask her. Some options might include: What would you do if this were your mother? Do you think she’ll ever be able to talk again? Eat again? Breathe on her own? Will she ever wake up? Be able to come home with us? If you don’t want to know the answers to these very important questions, you may get pulled further along a course of care that, given opportunity for further reflection, you wouldn’t actually want. So I’d advise you to take a deep breath and ask for the truth you might think you don’t want to know.
When it comes to this stage of life, every moment is precious, and the best way to get what you really want is to have a clear understanding of what is going on. Sometimes your doctor needs your permission to go there.
Jessica Nutik Zitter, MD, MPH practices critical and palliative care at Highland Hospital in Oakland, California. An expert on the medical experience of death and dying, she is the author of EXTREME MEASURES: Finding a Better Path to the End of Life (Avery Books, Feb. 21, 2017). A graduate of Stanford University and Case Western Reserve Medical School, Dr. Zitter completed her residency in internal medicine at the Brigham and Women’s Hospital in Boston. She was a fellow in pulmonary and critical care medicine at the University of California San Francisco, and earned a Master’s in Public Health degree from University of California, Berkeley.
Jessica is at:
Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?
My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.
The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.
It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?
If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.
If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.
I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.
Lower the price and it will sell. – Catherine D.
You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.
I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.
What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.
Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.
If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.
Not every upgrade or repair you make has to be expensive. – Cori C.
Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.
If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.
Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.
A mother of five and grandmother to nine, married and divorced four times, and a clinical social worker in private practice for nearly forty years, Joan Childs thought she had experienced or seen it all. But nothing could have prepared her for the death of her beautiful daughter, Pam. A brilliant psychotherapist, Pam battled constantly with Bipolar Disorder until one fateful summer day in 1998 when her demons overwhelmed her and she plunged to her death from a 15th floor balcony. Even with their combined credentials and medical knowledge, Pam still could not be saved. She became the driving force behind Joan Childs’ latest book, Why Did She Jump? (HCI Books), and brings hope to anyone struggling with grief from the loss of a child or loved one to mental illness, that there is hope for better tomorrows.
Fierce and tender, Joan’s compelling storytelling gives us an insightful yet sensitive look at her daughter’s life dealing with Bipolar Disorder. Peeling back the layers of pain and despair, Joan takes readers through the dark days of grief and guilt she felt both as a mother and as a frustrated professional who doesn’t understand why more hasn’t been done about this disease. With brutal honesty, Joan recalls how the lives of her entire family became entwined with her daughter’s illness as they watched her sink deeper into a place where no one could reach her. It is a powerful story of courage, hope, acceptance, and finally, forgiveness. Now, Joan reflects on her daughter’s many accomplishments, in spite of her illness, and sees them as Pam’s legacy to the world.
In an earlier book, The Myth of the Maiden: On Being a Woman, the author looks at the evolution of women from helpless maidens to dragon-slayers. Both books are excellent resources for personal growth and development after life changes and loss. In spite of many personal losses, Joan ‘walks the talk;’ she lives life to its fullest and maintains a level of energy and passion at age 76 that would put a 40-year-old to shame! A strikingly beautiful woman and energetic and inspiring speaker, Joan ignites the passion in others to find their own path to courage, healing and hope after the heartbreak and struggle of losing a loved one/child to suicide or any other cause of death.
Joan’s television series, Solutions, was dedicated to the memory of her daughter Pamela, and offered information and resources for anyone suffering from mental and mood disorders. She provides lectures, workshops and seminars dedicated to her profession of mental health and women’s issues and is a spokesperson for bipolar disorder and suicide.
Joan E. Childs, LCSW, has been in private practice since 1978. She is a Licensed Clinical Social Worker specializing in couples therapy, known as Encounter-Centered Couples Therapy. An expert in Codependency, Inner Child Work, Original Pain Work, and Second Stage Recovery, she is certified in many modalities including a master practitioner in NLP, (neuro-linguistic programming), a master practitioner in EMDR, (eye movement desensitization and reprocessing), Supervision, Hypnosis, PAIRS, (Practical Applications for Intimate Relationship Skills), and is a Certified Grief Counselor. She was the first affiliate of the John Bradshaw Center in the United States and has made appearances on national TV shows including The Oprah Winfrey Show, The Mark Wahlberg Show, Maury Povich, The Montel Williams Show, and many more.
For more information on this remarkable woman and her work, please visit the website: www.joanechilds.com.
Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress. Some family members may think you’re exaggerating. What’s all the fuss about?
“I’m not rushing you,” my husband declared. “Take your time.”
My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.
Knowing the sources of stress helps caregivers to cope with it.
Whether you’re a professional or family caregiver, grief is woven into your day. I grieve for my disabled husband, who spends his days in a wheelchair. If I’m honest with myself, I wonder how long he will live. Author Eleanor Silverberg, in her book, Keeping It Together: How to Cope as a Family Caregiver without Losing Your Sanity, thinks grief is an integral part of caregiving.
“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she writes. And grief takes many forms.
Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.
Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.
Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.
Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?
We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!
I spend a lot of time thinking about hospice care these days.
As my husband’s health declined it was as if we could hear the clock ticking more loudly. All the plans we’d made for growing old, the life we’d imagined, was not going to happen.
If our lives were a movie, we’d be going bungie jumping right now. Unfortunately, not all of us will be healthy enough to travel the world and live it up until our last days. My husband’s decline was slow at first and has sped up more recently. He can barely muster up the energy for doctor’s visits. The places we have not yet visited and the things we have not yet done will not be done. That door has closed already, while we were too busy with work and kids and everything else. The opportunity slipped away without us even noticing it.
Now I meet with the hospice nurses. We talk about ways to keep him comfortable. But they’re exceptionally kind and want more than simply managing his pain. They ask me questions about him. They ask him, too, sometimes when we’re together, sometimes when we’re alone.
What is it that makes him ‘him’? What gives his life meaning?
And then they think of ways to keep those threads alive. He can’t do what he used to do, but they come up with creative solutions so he can still participate in his life as best he can. We take him on excursions, carefully planned and modified to allow him to enjoy these final days.
He does not have to lie there in this hospital bed set up in our dining room and wait for death. He’s spending that time doing the things he enjoys, be they meaningful talks, beloved activities, or just playing video games with our sons.
It’s made me question what I’ve been doing these past few years. Because while I can answer these questions for my husband — what makes him ‘him’, what gives his life meaning — I can’t answer them for myself anymore.
Who am I? I’m a wife and a mother. My whole life revolves around other people. It did long before he got sick. I’m not sure my life ever revolved around me, but once I got married and the boys followed soon after, I stopped even considering myself.
I knew it when they were little and they’d ask me silly questions. What’s my favorite color? What’s my favorite hobby? I have no idea. But those things stopped mattering when I left elementary school, so I didn’t think much of it. Kids are so obsessed with favorites.
My husband doesn’t have a favorite color, either, but he has hobbies he’s passionate about. He’s always had friends with ties beyond a shared property line, the proximity of their desks, or the age of their children. He’s had interests that I know only the faintest things about. My life has always just revolved around him and the boys. I know all of their wants and hopes and dreams, but I don’t know my own.
The thing is, my husband has been a great husband and a wonderful father. He doesn’t love the boys any less than I do. But he kept himself while raising them. I lost myself along the way.
Soon I’ll be a single mom. I want the boys to have a parent who’s a full person, not just a vessel for them. How will I go on after my husband’s death if I don’t even know who I am?
As my husband tries to enjoy his last days with us as a family, I’m trying to find myself.
“The 10th anniversary of Helen’s death is coming up,” I told my husband. “I think we should do something significant—write a large check to the food bank or the public library.” John nodded his head in agreement. Helen died from the injuries she received in a car crash. There were audio books in the car and I was the one who returned them to the library, told the librarian Helen had died, and the books were overdue.
“I owe you money,” I said.
The librarian’s reply: “You owe us nothing.”
As soon as I finished this story I began to cry. What was going on? The 10th anniversary of Helen’s death was really an anniversary of four deaths. In 2007 four family members—Helen (mother of our twin grandkids), my father-in-law, my brother, and twins’ father—all died. No wonder John and I think of this year as the year of death. Thankfully Helen, who was divorced from the twins’ father, had a will and it listed us as the twins’ guardians. The court followed her wishes.
When the twins moved in with us they were 15 years old and we cared for them for seven years. Life was hard for us all. John and I tried to be upbeat for the twins, yet at the same time, we were grieving for multiple losses. Helen died of blunt force trauma, words I hate to say or write. On a snowy night she entered a highway from a rural road and her car was hit broadside. Helen suffered severe external and internal injuries. Her daughter, who was in the car with her, had a mild concussion.
The 10 year marker of Helen’s death took us back in time, back to trauma, back to emotional pain.
Bob Deitz, in his book Life After Loss, writes about grief anniversaries. Grief can be a time of self-discovery, according to Deits. As he explains, “Grief is as much about finding as it is about losing.” John and I understand this sentence. We think becoming GRGs, grandparents raising grandchildren, is the greatest blessing of our lives. Over time, the four of us evolved into a “grand family” and our lives meshed. Each of us recovered from grief in our own way.
Sonya Lott, PhD, writes about grief reconciliation/recovery in her article, “Finding New Meaning in Your Living After a Loved One Dies,” posted on the Good Therapy website. The path to integrated grief involves three convergent processes, notes Lott, accepting reality, finding new meaning in life, and staying bonded to the deceased. John and I went through all three processes and life settled down for a while.
But crisis struck in 2013 John’s aorta suddenly dissected. He was bleeding to death and surgeons operated on him three times in an attempt to stop the bleeding. During the last operation John suffered a spinal cord injury that paralyzed his legs. He was hospitalized for eight months and during this time I moved us out of the house we had lived in for 20+ years, put the house on the market, visited him three times a day, and maintained a writing career.
Our love is stronger than ever, yet I grieve for John’s disability and its impact on our lives.
John knew he might not survive the last surgery, but was willing to “roll the dice,” as he put it, because he wanted to see the twins graduate from college. Although he wasn’t able to be there, he cried when he learned both twins graduated with high honors and Phi Beta Kappa. Because he “rolled the dice” he was able to be in our granddaughter’s wedding and escorted her down the aisle in his wheelchair. The minute I saw them I started to cry and noticed many wedding guests were crying too.
Grief anniversaries are times of remembering. Toronto poet Maureen Scott Harris writes about her memories in “The Tenth Anniversary of Your Death.” Thoughts of the past prove “it is not fading,” she writes. Helen and the twins have not faded from our lives and we are still connected to them. Our granddaughter works at The Salvation Army headquarters in St. Paul, Minnesota and is an independent photographer. Our grandson is a student at The Mayo Clinic School of Medicine and will be the third physician in our immediate family.
All of these experiences—John’s health crisis, raising grandchildren, multiple losses, and Helen’s death—were part of the 10th anniversary. Similar to a highway mile marker, the anniversary of Helen’s death was a life marker, and proved my resilience. I had made it this far, created a new life, and learned many things. I know I’m a strong person. I know writing is a source of comfort and knowledge. I know giving to others helped me survive tragedy. I know goal-setting is an ongoing task. I know each moment of life is a miracle.
Most important, I know I made good things from grief.
Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.
Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.
When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.
Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.
A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.
In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.
Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.
In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.
He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.
Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.
Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago
MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!
He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.
Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.
Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.
His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.
Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.
While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.
So many of our community members are in this situation. Here’s what a few of them have to say…
I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb
I have [professional] caregivers during the day, so I can work. – Cathy
I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa
I feel part wife / part maid/ part cook / and I work part time. – Susan
I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley
I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel
I have to do everything plus work full time. – John
I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison
I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie
When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia
I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina
I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia
I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara
I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy
I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith
I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter
Some comments have been lightly edited for clarity
Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.
If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.
When a loved one dies, we often go into cleaning mode. There is an urge to bring order to a world that has been turned upside down. I began cleaning out my mother’s condo the same day that she died. I was desperate to stay busy, to wear my body out with exhaustion as my mind reeled from the profound moment I had just experienced. After a cleaning frenzy, I certainly was exhausted, but dismayed at how much remained.
My parents weren’t hoarders, but they came from a generation that was reluctant to discard of household goods. I was fortunate in some respects that my parents had always lived in small quarters, whether it was an apartment or the retirement condo, but a lifetime’s worth of stuff was still formidable to assess. Over time, I have made significant progress. The local Humane Society took my parents’ sofa and recliner, and I found a lovely woman via Care.com who picked up several boxes of donations to take to a church thrift shop where she volunteers. My mom would be pleased that everything from Avon dish collections (which she received from her brother and never used) to my childhood toys will have new homes.
Almost two years after her death, my mother’s clothes still hang in the close, as do my dad’s clothes, and he died five years ago. Furniture and books also remain. What happened?
It’s not sentimentality, as I long ago selected keepsakes from each of my parents that hold special meaning. It’s been difficult to find the rest of the items a home. Other families are running into the same issue.
As a Next Avenue article bluntly put it, “Sorry, nobody wants your parents’ stuff.”
I don’t have children, but even those who are parents will find that younger generations are not interested in acquiring “stuff,” especially when that stuff includes heavy furniture and book collections that will hinder their much-beloved mobility. While furniture, artwork, and books used to be family heirlooms, handed down from generation-to-generation, for younger people, these items are seen less as treasures and more as burdens.
As a Generation X member, I’m somewhere in-between in my love of old family items. I have a few such pieces in my home, but I’m not a collector. Even if I wanted all of my parents’ stuff, with their condo in New Mexico and my home in Georgia, the logistics and cost wouldn’t be worth it.
Family caregivers may end up babysitting their loved one’s stuff long after their family members are gone. For those who can afford it and need to move items quickly, there are estate liquidation companies and senior move managers who can offer tips on downsizing while your loved ones age in place. For others, especially those in rural communities, unloading household items can be more of a chore.
Charities that accept donations such as clothes and furniture often have a higher standard for quality than one might expect. They are not meant to be dumping grounds for junk, and they have every right to refuse items. My parents’ wardrobe, heavily worn and hopelessly out-of-fashion, would not make the cut at many charity-operated thrift shops.
Items like my parents’ bed are beyond well-used and simply need to be disposed of, but that is easier said than done in a small town. In Atlanta, when I want to get rid of junk, I simply used one of the many junk removal services. Some even provide same-day service. But no such service exists in my parents’ small town, and classifieds, online and in the local newspaper, have not been helpful. Unlike Atlanta, the town’s sanitation service does not offer a bulk rubbish day where heavy items can be left by one’s household trash for pickup. Everything would have to be trucked to a landfill. I asked a local home renovation company who was giving me quotes on repair projects for suggestions, and even they didn’t know of a local resource.
There are options which I’m going to explore. One option is donating clothing to nursing homes. My father wore mainly donated clothes during his time in a memory care center, because the distance was too far for my mother to bring laundry back and forth, as some family members did. Of course, there are no nursing home near where my parents live, so that would mean transporting the clothing.
Another option is to use a service like Goodwill’s Give Back Box which accepts most items (refer to website for restrictions) and provides a free shipping label. In my case, because USPS did not provide mail delivery to my parents’ condo, I would have to bring such boxes to a post office or shipping center.
My father loved the local library so I may be able to find a home for his books there.
Unlike some families who are selling their parents’ home and are forced to clean out quickly, I have the luxury of time as I maintain ownership of the home. The old mattresses and box frames are stacked in a bedroom, collecting dust but out of the way. The books are boxed up. The clothes are doing no harm hanging in the closet. While I’m still eager to finish the job, once everything is gone, I wonder if I will have a pang of longing for what is no longer there.
Maybe the younger generations have it right. Hang on to the important things, the memories of time spent together with loved ones, captured in a neat and tidy digital form. Let go of materialistic goods that do not bring joy or have special meaning. It will certainly make the purging process less painful.
The pain and sorrow of bereavement is supposed to get easier to bear as time passes. But what if it doesn’t? Psychiatrists call it ‘complicated grief’ – and it can be treated. Andrea Volpe reports.
After Stephanie Muldberg’s 13-year-old son Eric died of Ewing’s sarcoma in 2004, she was lost in a sea of grief. Her days were long, unstructured, monotonous. She barely left her New Jersey home. When she did leave, she planned her routes carefully to avoid driving past the hospital, just a few miles away, where Eric had been treated during the 16 months of his illness, or the fields where he had played baseball. Grocery shopping was a minefield, because it was painful to contemplate buying Eric’s favourite foods without him. To enjoy anything when he could not felt wrong. And Muldberg never thought she would be able to return to the temple where he had celebrated his bar mitzvah – and where his funeral was held.
Looking back, she describes herself as not knowing how to grieve after Eric died. “I didn’t know what to do, how to act in front of people – what I needed to do privately, who I could reach out to. I was fearful of making people more emotional, too emotional, and having to comfort them,” she tells me, by Skype. “I didn’t know how to talk about what I was thinking.” Muldberg’s long dark hair is pulled back and she’s wearing a white T-shirt. One of the things she says is that she thought if she stopped grieving, her memories of Eric would fade, and she’d lose her connection to her son for ever.
The passage of time often seems the only remedy for grief, but time didn’t help Muldberg. In the years following Eric’s death, she says, she felt consumed by grief. Then a family physician heard a talk by Columbia University psychiatrist Katherine Shear about treating chronic and unremitting grief and thought Shear might be able to help her.
Four years after Eric died, Muldberg arrived at the New York State Psychiatric Institute in Manhattan, for her first meeting with Shear. She answered Shear’s questions with as few words as possible. It was as if she were barely present in the small, windowless room. Her face was drawn and clouded; she sat crumpled in her chair, arms crossed tightly around her, as if the weight of her loss made it impossible to sit up straight. It felt to her as if Eric had died just the day before. Shear diagnosed Muldberg with complicated grief, the unusually intense and persistent form of grief she has been researching and treating for almost 20 years.
Grief, by definition, is the deep, wrenching sorrow of loss. The initial intense anguish, what Shear calls acute grief, usually abates with time. Shear says that complicated grief is more chronic and more emotionally intense than more typical courses through grief, and it stays at acute levels for longer. Women are more vulnerable to complicated grief than men. It often follows particularly difficult losses that test a person’s emotional and social resources, and where the mourner was deeply attached to the person they are grieving. Researchers estimate complicated grief affects approximately 2 to 3 per cent of the population worldwide. It affects 10 to 20 per cent of people after the death of a spouse or romantic partner, or when the death of a loved one is sudden or violent, and it is even more common among parents who have lost a child. Clinicians are just beginning to acknowledge how debilitating this form of grief can be. But it can be treated.
I first learned about complicated grief while riding the subway in Boston, where I read an advertisement recruiting participants for a study at the Massachusetts General Hospital, which I later discovered was related to Shear’s research. By then, I’d been a widow for about a decade. I was 33 when my husband died and it was fast – just six weeks from when he was diagnosed with pancreatic cancer. My grief had a different kind of complication: I was pregnant, and our son was born seven months after his father’s death. By the time I read that subway ad, he was in elementary school, and I was holding my own. I gradually went back to work. Single parenting was overwhelming, but it kept me focused on what was right in front of me. Having a young child is filled with small pleasures and motherhood enlarged my sense of community. I fell in love again. But it still felt like I walked with a limp, and that limp was grief.
Often, I felt that the course of my grief – as it slowed or accelerated – wasn’t within my control. Sometimes I’d buckle, and wait it out. Sometimes I’d push back. Somehow, I knew it was going to take as long as it took. There wasn’t anything to do about it except live. Freud, writing in Mourning and Melancholia, one of the first psychological essays on grief, saw it this way, too: “Although mourning involves grave departures from the normal attitude of life, it never occurs to us to regard it as a pathological condition and to refer it to a medical treatment. We rely on its being overcome after a certain lapse of time, and we look upon any interference with it as useless or even harmful.” That’s how it went for me.
I’d be the first to say that my path through grief has been intellectual. I’ve spent years contemplating what grief is. That subway ad made me wonder: Was my grief a disease? To be diagnosed with an illness is to seek – or wish for – a cure. But conceiving of grief as a disease with a cure raises questions about what is normal – and abnormal – about an experience that is universal. Is grief a condition that modern psychology, with its list of symptoms and disorders and an ample medicine cabinet, should treat, as if it were an illness rather than an essential part of being human?
A little more than a year ago I began sitting in on clinical training workshops at Columbia’s Center for Complicated Grief, which Shear directs. The first workshop was both a challenge and a relief. It was strangely comforting to be in the company of so many people – grief counsellors, social workers and therapists – who spent their time thinking about what it meant to grieve. It would be almost another year until I called Stephanie Muldberg to see if she’d be willing to talk at length about what her treatment was like.
Sometimes I can feel in our conversations how deliberately she chooses her words. She is, she tells me, a very private person. At times her desire to talk about her experience of complicated grief feels in tension with her natural inclination to be more self-contained. “I think the problem is people don’t talk about grief, and I want to normalise the fact that people can talk about it, and make it easier, and not so taboo,” she tells me.
For something so fundamental to being human, there’s still a great deal we don’t know about the grieving process. It wasn’t until the 20th century that psychologists and psychiatrists claimed expertise over our emotions, including grief. The conventional wisdom about grieving is that it’s something to be worked through in a series of stages. Lingering on any stage too long, or not completing them within a certain window of time, might be dysfunctional. Clinicians disagree about how long is too long to grieve, about whether the grieving person should wait for her grief to shift on its own or do something to initiate that process, and about what to do, and what it means, if grief is slow or stalled.
The idea of grief as something we need to actively work through started with Freud. John Bean, a psychoanalyst who has trained extensively with Shear and worked with her to treat patients in her research studies, explains to me that because Freud believed we have a limited supply of psychological energy, he viewed the central emotional “task of grieving” to be separating ourselves emotionally from the person who died so that we can regain that energy and direct it elsewhere. Freud thought this would take time and effort and it would hurt. His theory of “grief work” persists, often in tandem with newer theories of grief.
If grief is work, then Elisabeth Kübler-Ross provided the directions for how to do it. Kübler-Ross first proposed the five-stage model in 1969 as a way to understand the psychology of the dying, and it quickly became a popular way to understand bereavement. Today, those stages – denial, anger, bargaining, depression and, finally, acceptance – are practically folklore.
But it turns out grief doesn’t work this way. In the past several decades, more rigorous empirical research in psychology has challenged the most widely held myths about loss and grief.
When George Bonanno, professor of clinical psychology at Columbia University’s Teachers College, researched the paths people take through grief, he discovered there’s more variation to how we grieve than psychologists thought. His office, in a massive gothic brick building in New York City’s Morningside Heights, is crammed with books and lined with Chinese sculptures. On a rainy afternoon he outlines the three common paths he identified. Some people, whom he terms “resilient”, begin to rebound from loss in a matter of weeks. Others adapt more gradually, following a “recovery” path. The intensity of those first days, weeks and months of mourning subsides. They “slowly pick up the pieces and begin putting their lives back together”, typically a year or two after losing someone close to them. People with complicated grief, like Muldberg, struggle to recover. Their grief becomes what Bonanno calls “chronic”, staying at a high level of intensity for years.
One school of thought that has influenced Shear is called the dual-process model: grief is stressful, so we alternate between confronting the emotional pain of our loss and setting it aside. Even grieving people, research has shown, have moments of positive emotion in their lives. Hope returns gradually. If the stage model maps a single, clear path through grief, then the dual-process model could be seen as a charting a wave pattern through grief.
It’s now an axiom of grief counselling that there’s no one right way to grieve. That seems like a good thing, but it’s also a problem. If everyone grieves differently, and there’s no single theory of how grief works, then who’s to say that someone like Muldberg isn’t making her way through grief in her own way, on her own clock? Even though it was clear to her and to those around her that, four years after her son’s death, she was still suffering, bereavement researchers don’t agree about how to explain why her grief was so prolonged – or what to do about it.
Shear, who is in her early 70s, is the warmest shrink you’ll ever meet. Everything about her conveys equanimity, especially the way she can sit with the stories of patients whose grief is unrelenting.
It wasn’t always that way. “At the beginning,” she tells me, she was “afraid to sit in the room with someone who was really intensely grieving because I was still a little bit uneasy with death and dying, but also because it makes you feel so helpless – because you feel like there’s nothing you can do”. The grieving person, she says, “feels like the only thing that’s going to help” is bringing back the person they are grieving – “and you agree”.
“Grief is not one thing,” Shear says. “When it’s new, it crowds out everything else, including even people and things that are actually very important to us. It stomps out our sense of ourselves, too, and our feelings of competence. We think of grief as the great disconnector, but over time, it usually settles down and finds its own place in our lives. It lets us live in a meaningful way again. It lets us have some happiness again.”
Two weeks later, I’m jammed into a hard plastic desk in an overheated university classroom listening as Shear, who is professor of psychiatry at Columbia’s School of Social Work, explains the underlying principle of her work, which is that “grief is a form of love”.
She quotes me C S Lewis’s A Grief Observed to explain what she means: “Bereavement is an integral and universal part of our experience of love. It is not the truncation of the process but one of its phases; not the interruption of the dance, but the next figure.” This is called an attachment approach to grief. It’s shared by many grief researchers and counsellors, and it can be traced back to the British psychiatrist John Bowlby. Attachment is what gives our lives security and meaning. When an attachment is severed by death, Shear says, grief is the response to the lost attachment. Peel back the psychological theory, and what you’ll find is something that anyone who has experienced grief knows intuitively: “Nature is so exact, it hurts exactly as much as it is worth, so in a way one relishes the pain, I think. If it didn’t matter, it wouldn’t matter,” writes the novelist Julian Barnes in Levels of Life, his extended essay on grief following the death of his wife.
Shear explains that it’s our close bonds to those dearest to us that also help us want to care for other people and confidently explore the world. These attachments are woven into our neurobiology. The longing and yearning of acute grief, and the feeling of unreality that comes with it, she says, are symptoms of just how much grief short-circuits our bio-behavioural wiring.
Shear agrees with Bonanno that over time most grieving people integrate their loss into their lives. But people with chronic grief face some complicating factor. Complicated grievers tend to be women. They are often excellent carers but not so good at taking care of themselves or accepting help. Often, their emotional reserves of self-compassion and self-motivation have been drained. Shear says that “we don’t grieve well alone”, but frequently people with complicated grief become isolated because their grief has remained at high levels for so long; the people around them may feel that they “should have gotten over it by now”.
Shear believes that adapting to grief and loss is “a normal, natural process”, she says. “We’re not talking about grief itself being abnormal. We’re talking about an impedance in some problem of adaptation.” Think of it this way: her therapy jump-starts a stalled process, the way a defibrillator restarts a stopped heart.
Shear’s office, with its striped beige wallpaper and mahogany furniture, is so spotless it would feel like a hotel room it if weren’t for the picture of her grandson as a chub-cheeked toddler on her panoramic Apple monitor. It’s a sticky day in July, and she’s telling me how she came to study and treat grief.
In the 1990s, Shear was researching anxiety and panic disorders at the Western Pennsylvania Psychiatric Institute and Clinic when she became involved with research on depression and anxiety in elderly people. One of the common triggers for depression in the elderly is the death of a spouse, and the team she was working with identified a cluster of symptoms in depressed patients that weren’t depression. They expressed deep yearning, were often driven to distraction by thoughts of their deceased spouse, and had great difficulty accepting death, to the point that persistent, acute grief became a risk to their physical and mental health.
To differentiate grief-related symptoms from depression and anxiety, Shear worked with a research team that included psychiatric epidemiologist Holly Prigerson. It was Prigerson who, in 1995, had published a questionnaire that identified complicated grief as a specific syndrome and could accurately assess its symptoms. Shear has relied on it as a diagnostic and assessment tool in her research ever since. Shear and her colleagues also used it to design a new treatment, complicated grief therapy. Prigerson, who now holds an endowed professorship at Weill Cornell Medicine in New York City, and directs Cornell’s Center for Research on End-of-Life Care, continues to work on the epidemiology of prolonged grief.
In their first meeting, Shear asked Stephanie Muldberg to keep a daily grief diary, recording and rating her highest and lowest levels of grief. Muldberg kept this diary for the duration of the therapy. Every day for almost half a year she was paying such close attention to her grief that it became inscribed in her daily life. Not that her grief wasn’t already a pronounced everyday presence, but now, with Shear’s help, she was facing it head-on rather than avoiding it. The diary was one of several techniques Shear used to help Muldberg look her grief in the eye.
Muldberg says that the grief diary helped her pay attention to herself in a way she hadn’t been able to do in the four years after Eric’s death. Using the diary, she began to see that she had some happy moments interspersed with some low times of grief. “There were always going to be hard times during the day for me, but I wasn’t only focusing on the hard times, I was starting to learn how to move forward.”
Complicated grief therapy (CGT) takes place over 16 sessions, structured, Shear says, by techniques adapted from approaches used to treat anxiety disorders, including cognitive behavioural therapy, a well-researched approach to psychotherapy, and exposure therapy, used to treat avoidance and fear in anxiety disorders. The structure itself is part of the therapy, she says, because structure is reassuring to people who are feeling intense emotions.
Shear has been testing CGT since the mid 1990s. In 2001, she and her colleagues published a small pilot study that showed promising results. Since then, they have published several randomised controlled studies supported by the National Institute of Mental Health, demonstrating that CGT helps patients who have complicated grief to reduce their symptoms better than conventional supportive grief-focused psychotherapy. Shear is a pioneer, but she’s not an outlier. Currently a group therapy version of CGT is being studied at the University of Utah. Researchers in the Netherlands and Germany are also exploring variations on cognitive behavioural therapy and exposure therapy to treat traumatic and prolonged grief. And a recent study in Wales confirms one of Shear’s main findings, which is that the techniques in her treatment are more effective together than separately.
A few sessions into her treatment, Shear asked Muldberg to do something she had never done, which was to tell the story of the day Eric died. It’s a technique Shear adapted from prolonged exposure therapy that she calls “imaginal revisiting”. At first, Muldberg says, she was apprehensive because she wasn’t sure if she could remember what had happened. Over the course of three weekly sessions, Muldberg told the story of Eric’s death, rating her levels of emotional distress as she did. The purpose of this technique is to “help people connect with the reality of the death in the presence of a supportive person who is bearing witness to it,” Shear explains. “We want to keep grief centre stage,” she says. “If you do let yourself go there, paradoxically your mind finds a way to face that reality and to reflect on it.”
Then, as with the grief diary, Muldberg had “homework”: listening to a tape of herself telling the story every day between sessions. At first, this was distressing, but she gradually learned how to manage her emotions, recognising, she tells me, that she wasn’t going to forget Eric. The intensity of her feelings began to lessen, so that by about halfway through the therapy she began to feel better.
Muldberg admits she was sometimes sceptical of what Shear was asking her to do, and she says sometimes she pushed back. Part of CGT includes psychoeducation, in which the therapist explains to the patient the premise and purpose of the therapy. Shear’s explanations, Muldberg says, helped her understand that “there was a reason I was feeling this way”. She describes Shear’s approach as “I don’t want to push you but we’re going to figure out ways that you can accomplish these things, feel good about them, and do them.”
A few weeks after Muldberg started revisiting the story of Eric’s death, she worked with Shear to make a list of the places and activities she had been avoiding since he died, and gradually started trying to face them. Shear calls this “situational revisiting”, a form of prolonged exposure therapy. “We do this to provide people with an opportunity to confront the reality of the loss and actually understand its consequences, because being there without the person is going to be different than being there with the person. We want people to start to reflect on that,” she tells me.
For Muldberg, many of the things she had avoided were the everyday parts of being a mother, such as going to the grocery store, but she says, “I didn’t realise how much harder avoidance was than doing some of these things.” Together with Shear, she broke down tasks, such as driving past the baseball field where Eric had played, into smaller steps until she could do them again.
Sitting in that classroom listening to Shear explain these exercises makes my chest tighten until my heart aches. I can’t imagine doing them myself, let alone how anyone with complicated grief could withstand them. It seems like a wrenching exercise in repeatedly tearing a scab off a wound.
When I ask Shear about this she acknowledges that her approaches are counter-intuitive because they “ask people to go toward their grief”. She tells me it’s by explicitly detailing and describing their grief that people with complicated grief become unstuck, as they learn to shift back and forth between the pain of grief and restoring their lives. Shear is more interested in having patients engage with the therapy techniques than she is with getting them to reach a certain point. To her workshop audience, she puts it this way: “We do not try to lower grief intensity. I’m just trying to turn the Titanic one degree.”
In one of my conversations with Muldberg, I remark that CGT seems counter-intuitive, almost confrontational, and that these exercises seem extremely emotionally demanding. She is quick to correct me. Therapy was challenging, she says, but it came as a great relief to finally feel understood and have the support to face Eric’s death. “When I started to do things, I started to feel better,” she tells me.
For Shear, “feeling better” is a sign that our natural adaptive abilities are kicking in, allowing a person who is suffering from complicated grief to begin the emotional learning process that ultimately helps grief subside. This also creates an opening for the person to begin to reimagine their life after a devastating loss.
At the same time that Shear was helping Muldberg come to terms with the reality of Eric’s death, she was also helping her begin to envision the future. Part of losing someone very close, Shear says, is that we lose our sense of identity. Part of grieving is regaining it.
In another CGT exercise, the therapist asks a scripted question: “If someone could wave a magic wand and your grief was at a manageable level, what would you want for yourself? What would you be doing?” Someone with complicated grief can’t imagine a future without the person they’ve lost, or without the unrelenting, intense grief that’s taken up residence in their life. It’s a future-oriented question for someone who has lost sight of the future. Just asking the question, Shear says, can activate our innate exploratory system and spark hope.
One way to think of the therapist’s role in CGT is that she’s teaching her patient what grief is. “Loss is a learning process. The problem is, it’s unwanted information,” says therapist Bonnie Gorscak, one of Shear’s long-time collaborators and a clinical supervisor at the Center for Complicated Grief. Learning from loss, Gorscak says, means being able to “stand in a different place and look at grief”, to approach the pain it causes, experience it, and have some respite from it. It’s a counter-intuitive approach for therapists, too. Sitting with someone with complicated grief, Gorscak says, “is some of the worst pain I’ve ever sat with”.
CGT is challenging, but it works. Still, Shear’s therapy has sparked controversy, starting with the very idea that there is a form of grief so severe and debilitating that it meets the definition of a mental illness.
In recent years, Shear and a group of colleagues have advocated for a grief disorder to be included in the Diagnostic and Statistical Manual (DSM), psychology’s diagnostic bible, because they believe complicated grief is a clear-cut, diagnosable syndrome, separate from depression, anxiety or post-traumatic stress disorder. (Shear and Prigerson, once collaborators, now disagree about the best way to diagnose complicated grief, but they agree it should be viewed as a mental disorder.) Without sanction by a DSM diagnosis, psychotherapy in the US is not covered by health insurance. Without insurance reimbursement, CGT is out of most people’s reach. In 2013 the DSM-5 listed Persistent Complex Bereavement Disorder as a “condition for further study”, calling for more research on the issue.
The major issue therapists have with complicated grief is that they believe it pathologises a fundamental human experience. Leeat Granek, a health psychologist at Israel’s Ben-Gurion University, is concerned that including a grief disorder in the DSM could narrow the spectrum of acceptable ways to grieve and create a narrative that would distort the ways people understand their own grief. She believes that this would lead to “a lot of shame and embarrassment for the mourner because the expectations around grief are no longer realistic”.
Donna Schuurman, senior director of advocacy and training at Portland’s Dougy Center, which supports grieving children and families, questions the idea of a grief disorder. She rejects the use of terms such as “complicated”, “debilitating” or “persistent” to describe grief reactions and as the basis for constructing a diagnosable syndrome. Schuurman agrees that “grieving people may have chronic issues or chronic problems related to what has happened after someone dies”, but says that “often those issues were already there before the death”, and that “chronic issues ought not to be framed as mental disorders of grief”.
“Medicalizing or pathologizing the experience of someone who is having difficulty after a death does not do justice to the full social and cultural context in which he or she is grieving,” she writes. “Grief is not a medical disease, it is a human response to loss. Many people who are experiencing severe challenges after a loss are doing so because the social expectations around them are not supporting them.”
Instead of labelling complications of grief as symptoms that define a disorder, Schuurman says she would focus on the experiences and behaviours that were contributing to any “serious challenges” a grieving person was facing. “We can label it depression, drug or alcohol abuse, etc., as any good therapist should do,” and “try to look at underlying issues, and not just symptoms, to be of help,” she explains. Good professional help, she believes, “could take a variety of forms and theoretical backgrounds”.
New scientific research on grief, Shear’s among it, is challenging some of the foundational premises of grief counselling as it has been practised, often in community settings. As George Bonanno discovered, there are several common trajectories through grief, meaning that there are some commonalities among grieving people as they adapt to loss. Still, Shear says, “each experience of grief is unique, just as each love experience is unique”. CGT, she says, “helps people find their pathway to adapting to loss”.
One way to answer the question of whether or not grief is a disease is to ask if the treatment provides a cure. Stephanie Muldberg describes her grief as “a wound that wasn’t healing”, but CGT isn’t a cure the way antibiotics cure an infection. Grief doesn’t end, it just changes form. Muldberg says CGT taught her how to live with grief as part of her life. She still carries her grief for Eric with her, but she is also back in the world. She travels with her husband and daughter. She volunteers for the Valerie Fund, an organisation that supports families of children with cancer and blood disorders, and that helped Eric and their family when he was sick.
I ask Shear when her fear of sitting with intensely grieving people had subsided. “Well,” she says, “there’s this entire field of study called terror management.” I was expecting her to tell me about her feelings but she answers by telling me how research explicated them – exactly what she’s done in designing a therapy for complicated grief. I look up terror management: it’s the theory that in order to deal with the fear of our own mortality, we find ways to find meaning and value in our lives – like helping people. In that sense, what Shear has done with CGT is to create a form of evidence-based compassion. It’s compensation, perhaps, for the existential helplessness of the therapist, but it also compensates for many of our communal failures helping people grieve. We are too busy, too secular, too scared to deal with grief. It’s hard for Western culture – American culture in particular – to sit with something that can’t be fixed.
The more I thought back over my conversations with Stephanie Muldberg, the more I thought about how her therapy with Shear helped her put Eric’s death in context of her life story. The idea that a story needs a beginning, middle, and end goes back to Aristotle. People with complicated grief can’t see the arc of their own stories. They can’t get to what classic plot theory calls denouement – resolution. Most of us, when faced with a loss, find a way of putting what happened into the form of a story: this is what happened, this is who I was, this is what the person who died meant to me, and this is who I am now. But people who have complicated grief can’t do this.
Grief is a problem of narrative. A story, in order to be told, needs a narrator with a point of view who offers a perspective on what happened. But you can’t narrate if you don’t know who you are. Many of Shear’s therapy techniques are about learning to narrate in the face of great pain and devastating losses. Start with the grief diary, which records the emotional story of your everyday life. Follow that by imaginal revisiting, akin to a wide-angle shot in cinema, which helps organise a story arc amidst intense emotion.
Plotting out the story restores the narrator and the narrative. Then, you can begin to imagine a new story, a new plot for yourself. It’s not a choice between grief or living, remembering or forgetting, the way Muldberg once worried it was. The book of life is a multi-volume set. A sequel can only start when the first volume is brought to a close and when the narrator knows she’s going to be all right.
Being a 24/7 caregiver means there’s someone who needs you 24/7. But I’m learning to accept that it’s just not possible.
Believe me, I tried. For the first few months I was unstoppable! Any time Joe needed me, I was there in an instant. It didn’t matter what I was doing, how tired I was, or how many other things needed to get done.
And then I couldn’t do it any more.
I started to slow down. I started to get sick all the time. I started to get angry. There used to be two of us in this marriage and it felt like now I was all alone, responsible for both of us. I felt bitter and trapped. That’s not the person I wanted to be. I don’t blame Joe for getting sick, but I also couldn’t cope with how much our lives had changed. I wasn’t angry at him, but I was angry and I was taking it out on him.
Something needed to change.
I can’t make him not sick. The doctors can’t, either. I needed to stop hoping for a miraculous recovery and accept that this is the situation I’m in and it’s not going to change. I can be wonder woman for a little while, but I can’t keep it up forever.
I was going to have to learn how to take care of both of us without burning the candle at both ends.
Joe is a grown man, the type of guy who never stopped to ask for directions or get help from anyone. He was a real independent, take charge kind of guy. I loved that about him. He took care of me all the time. I really leaned on him for a lot of things. At first, when he accepted that he needed to let me help him, I felt empowered. I finally got to return the love and care he gave to me all of those years. I could show how strong I really am. After a while, it got harder. I started to resent how much I was doing for him. While he leaned on me for a lot, I know he didn’t like it.
Step one for learning to do this long-term was pushing him to do more for himself. I can wait on him hand and foot when he’s having a particularly bad day, but not every day. There are certain things he can’t do for himself and that’s fine. But I realized I was babying him. There’s more that he can do than he’s doing. While he’s learned to let me do things for him and expects me to do things, he doesn’t like it any more than I do.
I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. For a few months we discovered that he could do a little more for himself each day. Then we hit a plateau and it was frustrating, but that’s okay. His condition isn’t getting better, so now we know the maximum he can do on a good day and on a bad day and everything in-between.
As I pushed him to do more for himself, he also started to interrupt me less. Some things need to be done right then, it’s not optional. Other things can wait. He’d been interrupting me to ask for help for things that weren’t urgent and I was letting him.
Now we have a system that I check on him at regular intervals. He knows the longest amount of time he’ll have to wait before I’ll be there with him again and he can decide if he should call me in before that.
I can’t express how much this has improved our lives. He feels more independent. I feel more independent. And I can finally get things done. I had no idea how much trying to juggle a dozen tasks at once with constant interruptions was scrambling my brain!
Now some days I can do the stuff that needs to get done, from start to finish. When I hear him call for me I know it’s because it’s important.
I feel like I have my life back.
At first I felt like I was really letting Joe down by saying no to him. I didn’t even actually say ‘no’ and I still felt so guilty! But then I saw how happy it made him to get back to being the sort of guy who didn’t need someone else’s help all the time. We’re both so much happier now.
There are still bad days. It’s still exhausting. But now I know I can keep doing this. I could never stop being Joe’s caregiver — now I know we can keep this up, til death do us part.
I once tried to make a list of the things we respond to from the day we are born, and one of the first ways we bond with a parental figure is by communicating our feelings through tears or laughter. Mother and father then have to listen carefully to how we make ourselves understood so they can react accordingly. A loving parent usually ends up able to interpret each nuance in their child’s sounds and demeanor.
Later, when we learn to express ourselves with words, we have a deep need to share each new experience with someone who cares. It may be a parent, a schoolteacher, a grandparent, a friend, or all of the above. But one person’s close attention to our joys, our sorrows and our endless questions are a vital part of our growth—especially while every little happening in our lives is still the most exciting thing in the world to us.
As we reach adolescence, it becomes even more confusing if there is no one there for us to relate our concerns to about the emotional and physical changes taking place. How many troubled teenagers say that all they really miss is a parent or mentor to spend time with—someone who will take the time to listen.
Loneliness and fear take root early on in our lives when we feel we have no one to talk to. And in the twenty-first century, when both parents often have fulltime careers, it becomes increasingly difficult for a mother and father to find the time to listen to what is happening in their children’s lives. Emotional issues are usually the first to be put on the back burner and are considered “normal” for that age.
In my grandparents’ day, before the world was filled with high technology, families lived in a home where the children were usually born and where there was always a place for the older generation to live out their lives. The cycle of birth and death was not a mystery to young people who were active participants in all aspects of family life.
Now the aging process of a beloved grandparent is often, at best, kept at a distance while a staff of strangers takes care of them in what is now called “assisted living.” In these facilities all responsibility is taken off the family’s shoulders as the necessary level of care is upgraded with time.
This situation enables the next generation to ignore the final stages of life that the older person goes through and does not give the younger ones the benefit of the wisdom, love, or connection to those responsible for their heritage. And so the charade continues, while we permit ourselves to hide our heads in the sand and pretend that the impersonal care and feeding of those who raised us are adequate substitutes for our love.
The tragedy of abandonment of the ones who have nurtured us, who desperately need our love at the end of their lives, was overwhelmingly shown to me when I went to an assisted living home in New York City called Atria, where my old nurse Lucy, who had cared for my brother and me when we were born, was living.
When I arrived, I was told that Lucy was at a doctor’s appointment with her aide, so I went into a comfortable little sitting room to wait for them to come home. When I sat down, I noticed an elderly lady in a wheelchair talking on the phone with her son, pleading with him to come visit her. I could tell she was speaking in the most diplomatic way possible, so as not to anger him.
At the end of their conversation, I nearly fell out of my chair when I heard her say, in the sweetest possible way, “But, darling, you only live a block away.”
I have found that even when human beings have been forced to spend their whole lives in a state of lonely desperation, at the end, the door to their emotions is always ready to be opened. Although it may be only days or even hours before death that they find that loving ear, the deafening quiet of a lifetime can be erased forever in those last moments. It is never too late to make the connection, especially when it is a connection born of love.
So many of us have promised our parents that we’d never put them in a home.
And then, one day, we do.
Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.
Here’s what our community has to say about it.
I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.
What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.
I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.
My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.
When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.
Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.
I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.
Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.
That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.
I promised that for both of my parents.
But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.
It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.
I still care for my mom in my home. – Lorne S.
My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.
Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.
I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.
I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.
It’s not abandonment
“Abandoning” is the key word here.
When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.
My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.
You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.
It’s a pretty common problem: the person you’re caring for is refusing to bathe.
Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.
What’s normal to them
We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.
The feel of the water
[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.
Making them comfortable
Identify something special to them — might be a food treat, an outing, a special visitor.
For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.
Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.
- For women lavender soap is soothing. Or their favorite perfume from years past.
- Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
- Never spray the water on their head or face.
- Let them do as much as they can.
- I agree with letting them start with washing their hands or face with a cloth.
- Having a secure and easy to use bench to sit on makes it less scary.
- Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.
Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.
It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.
Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.
Ease your way in
Don’t say bath. To the elderly it’s allot of work.
Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around. She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.
So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.
Use bed bath products & wipes
In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.
It’s a struggle
Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.
Adult disposable wipes are good, too, when the struggle is real. – Pat S.
It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.
Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.
My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ
The other day I stopped by my dad’s place and caught the home health aide yelling at him.
At first I was livid. How could she treat him that way? She’s here to keep him safe and take care of him and she was clearly failing at that. Yelling at someone with dementia is only going to agitate them and make the situation worse. Don’t they train home health aides?
And then I stepped back. Because, well, I’m not proud of it, but I’ve yelled at my dad, too.
I realized I was about to yell at her for yelling at my dad.
I know it’s not right. I know he isn’t responsible for his behavior. I’ve read all the advice, watched all the videos, and know what I’m supposed to do. But following the advice is so much easier said than done.
I know what I’m supposed to do, but I don’t always do it.
My first instinct was to fire her immediately and call up her company to complain. But that’s not what I did.
Instead, I asked her to finish what she was doing so I could talk to her. We talked about what I saw and I told her I understood how frustrating taking care of my dad can be, but that obviously what I heard wasn’t acceptable. She was so embarrassed and apologized. We talked about what had happened to get her worked up and swapped ways to keep our cool.
It felt like a bonding moment. I hope I’m right and that this won’t happen again. Hopefully this will mean my dad will get better care from someone who knows I want to work with her, not against her. Someone who sees her as a real person, working just as hard as I am.
If you’re reading this and have prostate cancer, there’s a really good chance this article will help you. It’s based on my experience and will give you information on new genetic testing, based on a lot of research that can change your outlook for treatment, that leaves men with such dreadful side effects, and sometimes don’t even work.
Prostate cancer is the #1 most common cause of cancer in men worldwide and #2 in the USA. It is estimated that one in every six men will get it. Every 3.3 seconds a man is diagnosed with the disease. Every 20 minutes a man dies from the disease. ( “ZERO prostate cancer–2017 stats”) The exact cause of prostate cancer is unknown. But recent studies indicate the likely cause may be diet. You know the old saying, you are what you eat.
Read this article carefully if you or your loved one has the disease or, share it with someone who does. It will help you by guiding you to the right questions, to ask your doctor. Genetic testing has allowed me to relax and take my mind of what doctors said, which, was a clear cut case for surgery or radiation. I have a significant prostate cancer, but genetic testing says, treatment will not benefit me. And I’m not dying, or sick.
Genetic testing is not on the protocol yet, for weighing out treatment options. If you or a loved one are diagnosed, ask about Genetic Testing. As you read this article, you’ll see the major difference/impact it has made on my life and how it totally changed my treatment strategy.
Here are some of the early warning symptoms, that may or may not be prostate cancer:
- Burning or pain during urination,
- Difficulty urinating, or trouble starting and stopping while urinating,
- More frequent urges to urinate at night,
- Loss of bladder control,
- Decreased flow or velocity of urine stream,
- Blood in urine
Normally, when the symptoms show up, it has not been caught early, but perhaps early enough to be treated successfully–All men over 50 need to have their prostate checked and a PSA blood screening annually–if a father or brother has had prostate cancer, some studies suggest a man should consider having a PSA test as early as 35 years old.
In an effort to keep this article simple, I’m going to speak about what the man needs to do, and not about all the scientific stuff that’s better off left to the scientists. Science is complicated, what needs to be done to save, prolong or provide some quality of life, not so much.
It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why? Most men don’t want to talk about a disease that is so personal, and private, the words need not be spoken. Therefore, the voice of reason is silenced.
Most prostate cancer deaths in men occur between the ages of 50 and 60, then jump to 80 and above. Reason being, younger healthy men will not go get screened, it can’t happen to them. So they say. Ignorance is bliss. And that’s basically the attitude I took and part of the reason why I got myself in a bit of a mess, which, against the odds, I’ve overcome. For those over 80, they’ve usually had it for a number of years and it’s run its course.
Through my story, my goal is to help you “safely” use “Active Surveillance” when possible, and keep your prostate in your body as long as you can, if that’s your desire. Treatments, such as surgery and radiation come with some not so good side effects. The side effects that effect most men after treatment are, erectile dysfunction and incontinence. And both are major problems. Quite common.
If you’ve already had the surgery, the following paragraphs may apply to you.
In 2016, UCLA Urology released guidelines on how successful radical surgery and radiation are. According to UCLA Urology, 50% of all surgeries to remove the cancer, fail. The cancer comes back. Radiation has a 27 percent likely hood of the cancer returning.
Genetic testing-Decipher Biopsy: This is one of the two genetic tests I had and talk about. And how it could help you. Decipher biopsy is supported by in depth clinical studies.
http://genomedx.com/decipher-test/improving-treatment-decisions/ This is the link to the next 5 paragraphs, along with more detailed information on genetic testing of prostate cancer. Do yourself a favor, and read the information before you have treatment of any sort.
Decipher biopsy-post op. If you have surgery and it fails, the Decipher biopsy may be your saving grace. Once the surgery has failed and you’re scared of the relapse, have the Decipher Biopsy.post op, if you can. Decipher literature states that 90% of those that fail surgery, will not develop metastases or die of prostate cancer. Huge numbers. And you need to know that. This means that – if treated after the failed surgery, patients may receive no benefit at all. Worse, they may be subject to unnecessary complications caused by post-surgery treatment for prostate cancer. Which is radiation with ADT (androgen deprivation therapy) that reduce levels of male hormones, testosterone and dihydrotestosterone. The urologist from Memorial Sloan Kettering, Urology Group calls ADT, a form of castration. Very primitive and doesn’t work all that well.
Decipher-post op, may help avoid over-treatment by reclassifying those men originally identified as high-risk, who are unlikely to develop metastatic disease.
That means, if your surgery fails, check with your urologist/oncologist and see if you can have the Decipher Biopsy-post op. In many cases, it will allow a patient to avoid further intervention via radiation.
In clinical studies of high-risk men after surgery, Decipher reclassified 60% of men to lower risk categories3. 98.5% of patients reclassified to low risk by Decipher did not develop metastasis within 5 years of radical prostatectomy.
Across multiple clinical utility studies, 39% of physicians changed patient treatment planning after reviewing Decipher results 4,5, resulting in a 50% reduction in radiation therapy planning in those identified as low risk by Decipher.
What made me go public with my prostate cancer?
Almost six years ago, I watched in pain, as my wife Annie lost her battle with a dreadfully painful cancer, multiple myeloma, that left her with many broken and very badly diseased bones.
Once prostate cancer spreads to the bones, Dr. Grant Rine, radiology/oncology, Wichita, Kansas, who was Annie’s radiologist, told me prostate cancer can be like Annie’s. Very painful and debilitating.
So, I’ve decided to lay all the cards on the table, and discuss a subject that most men will not.
This is important information and can save some lives through early detection, not to mention the burden and emotional instability the treatments can place on a patient, and most of the time the effects it has on the woman or partner in a relationship. I will talk about some recent techniques that make the decision on when to have radiation or radical surgery much easier. And discuss the possibility of being over treated, meaning, having treatment too soon, when treatment may not be required for several years. Most often, but not always, prostate cancer is detected when it’s low grade and grows very slowly.
During a routine physical exam by my family doctor in Jan 2016, he noted that my PSA, a simple blood test that measures the level of a protein called, prostate-specific antigen, a part of the screening for prostate cancer, was still elevated at 5.40 ng/ml, and that I needed to go back and see Dr. Byrd, my urologist. I was scheduled for an appointment to see Dr. Byrd on, I believe Jan 21, 2016. (Note: Again, If you are over fifty, you need to have your primary care doctor check your PSA annually.)
Most insurances and Medicare recognize a PSA score of 4.0, as the standard when action needs to be taken and will be covered by them. Under 4.0 they won’t usually do anything, or pay for anything, other than the screening. Of course, once diagnosed with cancer PSA tests are administered as needed.
On the 21st of Jan, 2016, I saw Dr. Byrd. After chatting with me about my PSA results, he leaned over and got a plastic glove out of a box, which was my cue to lower my pants. He then had me lean over the bed and he inserted his finger into my rectum to check my prostate for nodules or any enlargement. To the touch, my prostate was normal.
After the examination he told me that as I had no signs of infection or enlargement of the prostate, which can raise the PSA levels, my chances of having prostate cancer were about 35% and it would be wise to get a biopsy and rule it in or out.
There was no hesitation in my voice, as my PSA score had been elevating slowly over the past 3 years, starting in July 2013 when it was 4.20. During that time frame July 2013 to Jan 2016 I had 5 screenings and all were elevated but one, and it was 3.84. So, I kind of knew I had prostate cancer. I had no symptoms other than the PSA score.
Those three years that my PSA levels were elevated, I was in a difficult battle with grief, over the loss of my wife Annie. I ignored the possibility of cancer, not wanting to talk about it. But still, I spent a lot of time doing research, reading anything I could on the cancer, to include understanding the treatment options, all the side effects of the treatment, and the biopsy. Now I would be putting all that knowledge to use.
Feb 3rd, 2016, I had my prostate biopsy. I was not anxious, in fact, I was very calm. The nurse left the room while I stripped down and put a gown on. She then came back in, asked me to set on the bed and told me that the doctor would be in soon. (Three days prior to the biopsy I was put on antibiotics to help ward off infection.)
When Dr. Byrd came in, he had me lay on my left side, with my buttocks extending a fraction over the edge of the bed. He then inserted the TRUS probe, which is about the size of a finger into my rectum, for a guided needle biopsy. A needle is inserted through the probe to numb the prostate before the tissue samples of the prostate are taken. Once numb, Dr. Byrd went all around my prostate and took 12 core samples. The procedure took about twenty minutes and although uncomfortable, was not painful. (note: some doctors do the biopsy while the individual is lying on his back or stomach)
After the procedure he told me that I would have some rectal bleeding, especially during bowel movements for a few days, and maybe longer. The blood in my semen can last up to 6 weeks, and some cases 3 to 4 months. All of which is normal.
My rectal bleeding was over in a week or two at the most, and semen was normal in about three weeks. In the semen the blood is usually a rust color and as it heals, turns brownish. My blood looked like Ketchup for a few days, then turned to the rust color.
It’s okay to have intercourse after a biopsy, but studies suggest you wait a couple of days, as the strain may cause more blood in the semen. You’ll know if you’re aggravating your prostate by the color of the blood. It’ll be bright red.
Everything we’ve talked about so far has been relatively benign or straight forward. From this point on, my life got very tricky, dealing with both the known and the unknown.
Through this article, hopefully, I can get a dialogue started for you and perhaps help you understand this insidious disease, a little better.
On 13 Feb, 2016, I went back to Dr. Byrd’s office and received my pathology report. Out of 12 core samples, 6 were malignant. I knew that couldn’t be good.
I essentially have a high volume cancer, meaning, in my case, it’s covering approximately half of my prostate. Do to the high volume, after I have treatment, surgery or radiation, the cancer has a 50% chance of coming back. Low volume cancer, indicates a low risk of returning after treatment. And therein lies the problem for me. Surgery may or may not help me. Studies show, that a patient with a high volume cancer, with 50% volume, don’t do very well long term. And that’s with or without treatment. My cancer was not caught as early as we first though. Lack of symptoms, or failing to recognize the symptoms caused the problem for me. (Only about 25% of all men with an elevated PSA count have prostate cancer.)
But, my case is rather complicated and confusing as my PSA score is not indicative of a high volume of cancer. Still, half of my prostate is cancerous, so, it is what it is.
Five of the samples were low grade cancer, Gleason score of 6. But one was intermediate grade with a Gleason score of 7. Essentially, I had an intermediate grade cancer due to the 7. And that one sample is what’s causing all the problems. A Gleason score of 8-10 is a high grade cancer, likely to spread. The pathologist assigns the Gleason score.
After Dr. Byrd spoke to me for awhile, he gave me a list of treatment options. The two viable ones were, radiation or surgery.
(Note: There are other treatment options out there. Including advanced cancer clinical trials. Check out/search for: UCLA Medical Center, #3 ranked Urology Group in the country.
He asked me what I wanted to do.
I told him nothing at the moment, I needed some time to think about it. I asked for three months with active surveillance, and he said okay.
All the literature and research I’ve read says, upon initial diagnosis, unless the cancer is considered high grade, step back, take some time away and do some research on your options.
For whatever reason, I was still uncomfortable with the situation as it presented itself. So I said to him, I’m supposed to make a major life changing decision based on this information. Is this it!
He thought about what I said for a minute, then said, there is one thing we can do. A Prolaris Biopsy, but it’s expensive and your insurance might not pay for it. It could be as much as $4,000, or simply a co-pay of $379. He had the nurse run it through my insurance, Medicare-Tricare for Life, and it was covered 100%. I said, let’s do it. He smiled saying, it will be interesting to see just how involved the cancer is.
Prolaris testing is a genetic test of a sample of the biopsy I recently had. If you or a loved one has prostate cancer, it can guide you on whether you need treatment right away or if active surveillance is appropriate. It would be wise to hold onto your prostate until you need treatment.
To a urologist or doctor, the smart thing to do is get the prostate radiated, or have radical surgery to remove it. I understand their thinking, that a removed cancer can’t hurt. But as you’re seeing it a bit more complicated than that. Ultimately, it’s your decision.
Three months ago at my prostate support group, I watched a 6 month old video. The speaker was one of the top urologists in the country. He was working at Memorial Sloan Kettering Hospital, Urology Group, ranked fifth best in the nation. He said, one of the most difficult challenges for him is seeing all the men that come to him for help. Their sad statement is–why did I have surgery so early, when I probably had several years before needing treatment. According to the urologist, it happens because the men are freaked out by the cancer, don’t understand it and just want it out. Of course, the doctors are happy to oblige them, as they want it out too.
And then of course, there’s this: In 2013, over 15 billion dollars was spent on prostate treatment. That’s a lot of money.
Remember what I said earlier. “I’m supposed to make a major life changing decision based on the limited information I had.” I couldn’t do it. And you need to think about it.” If appropriate, have genetic testing. Your doctor will tell you if that’s a viable option.
After the biopsy report comes in, make sure you get a copy of the pathology report, chill, and if need be, make a request for the Prolaris biopsy, if you want to go that route. Once that’s done, you can compare the two and if you were leaning towards treatment, radiation or surgery, there’s a 40 to 50 percent chance you will change your mind and choose active surveillance.
March 14th, 2016, I got my Prolaris results back.
Prolaris staged my cancer at T1c. Which is a low stage and means it’s still contained within the prostate. Pathology does not stage the cancer, but is one of the factors in staging.
Prostate cancer is staged between one and four. One being the best, four being the worst. UCLA Urology website breaks that down.
Staging the cancer is one of the most important factors in choosing treatment options. Often times treatment choices are based on staging. So, make sure your cancer is staged. Ask your urologist or oncologist what stage you are in. It really does matter.
Here’s what my Prolaris said: “This patients 10 year risk of prostate cancer specific mortality is 4% with conservative management.” “Mortality risks could be altered by various therapeutic interventions.” In other words, if I go on active surveillance, have a PSA test every 3 months, and a visit with my urologist, that is considered conservative management. If something were to go wrong, the doctor would likely detect it in time to do treatment. Surgery or radiation.
And every day I don’t need treatment, is a good day.
When I left the doctor’s office that day, I was upbeat and feeling good. If I hadn’t pushed for more information, I would never have known about the Prolaris test. And, I now knew for sure, I was hanging onto my prostate gland and not in any danger at the moment. I would be seeing Dr. Byrd again on May 13th, 2016 with fresh PSA test results.
May 13th, 2016, I walked into Dr. Byrd’s office. We had the usual chat, and he told me my PSA score was 4.6, down from 5.40. As we knew the cancer was still there, it was a good result, but didn’t mean much at the time.
Dr. Byrd asked me what I wanted to do, and I told him I wanted 3 more months. I think it kind of aggravated him a bit as he sharply said, Bob, you’re going to have to deal with this sooner or later, it’s not going to go away.
Dr. Byrd was advising me, but not in a way that I didn’t have some wiggle room to make my own decision. In other words, I’m not going against medical advice, I actually agree with him on surgery at some point, but I want more time and information before I make a decision.
Before I left, I told him I’d like to go to Kansas City, and get a prostate specific MRI. Once I had those results, making my decision would be based on everything I could possibly know. So I thought.
To my amazement, he said we now have the same MRI technology here at Wesley Medical Center as Kansas City, and training the techs is ongoing.
Since I was due to see him again in mid Aug, we set the MRI up for the first week of August. He said he needed 6 months between the biopsy and MRI, in case the prostate was still inflamed a bit.
August 1st, 2016, I had my prostate MRI. The urologist would now be able to see the cancer, up close and personal. According to the radiology tech, I was the first patient to have the new prostate MRI in our area. Which may or may not be true. I was in the tube from 1pm until 2:55 pm. Allegedly, again, according to the tech they took 2,000 pictures. Seemed like a lot to me, but they also took pictures of the surrounding area looking for any signs of cancer in the bladder or pelvic lymph nodes.
A week later I had my PSA blood work done, with the results being faxed to Dr. Byrd.
August 15th, 2016, I went back to Dr. Byrd’s office with a copy of the CD given to me after the MRI to, hand carry to my appointment.
Dr. Byrd went over the written report with me. The good news was, we now had a definitive determination that the cancer had not spread beyond the prostate as my entire pelvic area was clear. It’s never 100 percent for sure, but it looked good and the best they can do at the moment.
The prostate was basically as he thought it would be. There was one area, the Gleason 7, I talked about earlier in this article, that was and is concerning. This is the exact wording on the report. “High clinically significant cancer is likely to be present.” I knew it, but not in those worded terms.
My PSA had dropped again, from 4.60 to 4.30. I asked him why that was happening and he said, to drive me crazy, meaning him.
He went through all the paperwork, then shocked me by saying, if I treat you now, I run the risk of over treating you. He said, I could have three more months of active surveillance.
Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery or radiation, but for now, it seems that won’t be necessary.
During our visit I spoke up, telling him I needed four more months. While I was explaining myself to him, (I wanted to go spend 50 days in Northern California Salmon fishing), his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. He was rather deep in thought. However, in the end he said, he’d see me in four months.
That was a high five moment for me, but he didn’t know that.
But as I was starting to learn, sometimes when things seem to be too good to be true, they may be.
Aug 26th, 2016, I got a call from Lauren, Dr. Byrd’s nurse, who said that Dr. Byrd had rescinded my active surveillance program for now. He apparently looked at the CD of the MRI at some point after my appointment and saw something that was troubling to him. So in a group meeting with all the urologists they looked at the CD and the consensus was, I need further genetic testing.
Aug 29th, 2016, another sample of my biopsy was sent off, this time for a Decipher biopsy. This is a genetic test they normally use when a person has already had his prostate removed and the cancer is coming back. The patient is in relapse. In my case, it tells them if it’s high grade or not, gives a 5 year metastasis, and a 10 year prostate cancer specific mortality. And whether or not I’m a good candidate for Active Surveillance.
Some days, I simply feel like rolling the dice and taking the ten years or whatever I can get, and leave the cancer alone. Then, I flip the coin over and realize, what a selfish, foolish, act that could be to my loved ones. Then, I look at the fail rates of surgery and radiation and it becomes a catch 22. At some point, I’ll probably have to make a decision. Hopefully, way down the road.
On 15 September 2016, my Decipher biopsy came back inconclusive. The lab said they did not have enough information to make a determination. And I don’t know what information their speaking of. I do know the information was resubmitted a few days later.
What to know
Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when dealing with a low volume cancer, caught early enough. However, before having radiation or surgery, if you’re in your mid 70’s, you might want to have genetic testing if you can, giving yourself a chance to, perhaps, ride out the cancer if it’s low grade.
If you’re in your 60’s, the decision is much tougher. But, if you qualify for genetic testing, it will give you a good snapshot of how your cancer is behaving, and may prevent you having early treatment, that you don’t yet need. And you may be a candidate for active surveillance, which allows you get on with your life while seeing your urologist every 3 months for a PSA. And even if you don’t get the
genetic testing, low grade prostate cancer, may qualify for active surveillance. Ask your Urologist or Oncologist.
If you are in your 50’s or younger and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Again: Considerations to the side effects need to be thought out. There’s many. If you’re married or have a partner, you really need to have that awkward discussion with them too. If your cancer is low grade, Gleason score of 6, many of the leading urologist recommend keeping your prostate as long as you safely can through active surveillance, avoiding the side effects as long as possible. Have genetic testing if you can. Ultimately, the decision lies with you and your urologist or oncologist. But don’t panic and make a snap decision, unless your cancer is high grade. You’ll have a good idea where you stand from the biopsy/pathology report.
What I’m saying is this. If you have a low grade, low volume cancer, which most are, Gleason score of 6, you may not need treatment for many years. That’s a big deal to a happy couple with an active sex life. Psychologically, to a man that loses his manhood, it can be devastating. And incontinence is almost mandatory after surgery. Counseling is often times recommended.
But, if you do need to have surgery, make sure your urologist/oncologist know how you feel about erectile dysfunction, and that they practice nerve sparing surgery. Most do. Still, make your intentions clear on ED. Don’t let a doctor make that decision for you. If the nerves are spared, and sometimes they can be, there’s a good chance the little blue pill will get you where you want to be. Without the nerves, well, if your under 60 they can grow back in two years. Your urologist will advise you on what to expect.
Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.
Waiting for my Decipher results to come back created a lot of anxiety to me. My fear was, that the cancer was spreading outside the prostate, based on something they saw in the MRI, that perhaps the radiologist missed.
On Oct 3rd, 2016, I got my Decipher results back. Better news than any of us expected. My Decipher score was 0.18, Genomic Low Risk Cancer. Chance of spreading in 5 years is 0.8%, 10 year prostate specific mortality is 1.5%. Lowest risk is 0.00, while 0.45 is average, so at 0.18, I’m in a good place to be with this cancer.
Interpretation as written on the report is as follows: Among men with a low risk Decipher prostate cancer classifier score, clinical studies have shown that this cancer has a favorable prognosis. Men with a low risk Decipher score, may be suitable candidates for active surveillance and may have excellent outcomes even when treated with local therapy alone.
The Decipher test was the deciding factor on my treatment. What looked to be a cut and dry treatment plan for my significant cancer, at some point, surgery or radiation, was only true until all the facts were in. Genetic testing saved me a lot of misery, as I was listed at high risk for cancer return after surgery. As you’ve read, I no longer need it, and may never need it. Of course, nothing is certain with any cancer. The doctor tries to treat or cure it, and we do our bit, and what we can to live and fight another day.
On the 14th of Dec, I received my latest PSA score. It had now dropped to 4.1. Incredible news. My PSA is still trending down, which means the cancer is a little less active than it was last time I had it tested in mid August.
It’s now Jan 13th, 2017, and I’m still on active surveillance and doing well. My next PSA is on April 3rd, 2017.
If you have prostate cancer, see if there is a support group in your area. I go to Wichita Prostate Cancer Support Group, and it offers me a breath of fresh air. Some folks are emotionally struggling with the disease, some are fighting metastasis (the cancer has spread), some have had radiation, some surgery, and then there’s me, on active surveillance. And we all have our own individual story to tell. And that’s what makes the group so important and so special. We emotionally support each other as best we can.
It reminds me of being in a war zone and we’re in a battle for our lives. We all have been wounded, some worse than others. Some have been hit by a flame thrower and had it (cancer) burnt out, some have been pierced by the blade and the bullet (cancer) removed, some have life altering injuries requiring continual treatment, and some are okay. But we’re all on guard duty, ever so vigilant, watching and waiting. And we all have one thing in common, “we are all survivors” of one of mans greatest adversaries.
I wish you all, the best!
Contact me privately, if you need to talk or ask a question. I can help stabilize your thoughts.
It’s a really exciting time to be in the US. The fact that the current healthcare system is being dismantled means that we have the opportunity to fix the most vexing problems.
I didn’t grow up in a military family, but I married into one. That means I’m dealing with paying with healthcare for my parents and aunt, who are on Medicaid and insurance through their work, as well as for my husband with Tricare, the military health insurance.
While I won’t pretend Tricare is perfect, it’s exponentially better than its civilian counterpart, Medicaid, or even private health insurance. I would love to see Tricare extended for all Americans, not just those who’ve served our country directly.
If we couldn’t do that, imagine if Tricare covered all government employees, like teachers and police officers.
The things we insure say a lot about what we value.
Right now, the government has stepped in to say what should be covered by health insurance. They’re about to make that decision again.
When home care is left out of health insurance, that says a lot about what America values.
I can’t think of anyone who’s willing to abandon their family members. Sure, they’re out there, but I’ve never come across anyone.
Usually people aren’t helping because they know another family member will do it. Or they can’t afford to provide the care someone needs, so they do their best to keep their job and still help out.
I don’t know how to fix US healthcare, but I do know this is our chance to ask that the help family caregivers need be written into law.
I’ve been calling my reps and asking for them to cover home health care, provide annual respite for family caregivers, and improve nursing home care. What sort of support do you want for caregivers?
Call your representative today!
Featured image: City of Angels / Shutterstock, Inc. San Francisco, California, USA – December 24, 2015: Old man in a wheelchair is assisted to get off a van using a lift.
depression is weird.
especially for someone like me,
the always happy,
bullshit person that I am.
to be depressed is mind altering.
it takes up space.
it controls a part that isn’t easily handed over.
a constant battle between who you are,
and who you perceive yourself to be.
how do you come out of it?
should you be honest?
explain to your closest and dearest,
that you can’t go on?
or do you just go on?
and then just keep going on,
and on and on….
or do you wait out the wave?
because you know that is what it is?
just a wave.
and there will be sunshine soon.
just wait out the wave you tell yourself.
and you hope you can.
I have never written a blog. Don’t quite know what a blog is. The one blog I have read was part of a novel. As far as I can tell blogs are rants. Mental diarrhea spilled on a page for strangers. So, fellow caregivers wearing a hat from hell, do you talk of ending it all? Use the no-no word — death? Ooops. Aren’t I supposed to love my role, the God-given opportunity of service, the privileged chance to score a heaven-entry ticket like the pre-check and global card we flash to airport security.
Admit it people, you are persona non-fff-ing-grata, a feared social pariah now your partner/spouse is disabled. At least I am. And, if I’m honest, I wouldn’t choose us to take up space at a dinner table for six or eight—deadweights with NEEDs who don’t fan witty dinner conversation.
So-called friends shy from you and your spouse at social gatherings. If they do stop to say hello, ask, “How you doing?” they move along without waiting for your reply. “Better make the rounds,” they murmur.
“Everything good?” an acquaintance purred as she passed. Her eyes popped when I slammed back, “No. Hardly.” I knew she knew of my husband’s crumbling beneath the weight of Parkinson’s — my crumbling too. “We’re crawling back from death,” I spat. “The emergency room docs gave him a couple of hours to live.”
I’m tired of making nice-nice everything’s-fine bullshit noises, tired of keeping people comfortable. I want authentic. A kindly ear to receive our story.
You might wonder why I was there…socializing, I mean. You might say I had no business going. I wonder why too. Pretending it was fun to sip a glass of red while burbling inconsequential rubbish about the damn cottontails having eaten the new tomato plants.
“…and despite the fact their leaves are poisonous…” the woman paused, smiling.
So bunnies why didn’t you roll about and die if the plant was deadly, my thoughts growled, and immediately my mind flew back to the husband I’d left at home.
“Be gone no more than half an hour,” lipstick dragged across my lips, I kissed my dozing beloved’s lips and fled. I craved air… a few minutes flight with my wings unfurled.
Does that make me an abuser leaving him unattended? Because I do. Sometimes two. Even three hours. Propped upright into his chair, a spill-proof drink beside him, the TV switched to a favorite channel, the phone he can hear but isn’t able to dial within reach, I dangle the car keys hesitating.
“I’ll be fine,” he encourages. “Go. I’m OK. Go.”
Three hours tops is OK I rationalize. If he fell, though it wouldn’t be jolly lying unable to move that long, it wouldn’t be fatal.
“You are so strong. I don’t know how you do it.” (Perhaps you know how fellow caregivers?)
“Do you think I know either? Think I chose THIS?” Suddenly I am mad, want to yell. I don’t of course. Instead fluster a coy, alligator smile, thinly veil my bite. You see compliments make me feel bad.
He’s so lucky to have you… I flap my hands in feeble denial. You’re an angel… Perhaps as a baby I had angel wings and IF I ever did, they’ve long been shredded…the patience of a saint… Meant so kindly such comments make me squirm.
Breaking point trips evermore frequently. Have I become an unsuitable caregiver. Someone who might …forbid the thought …tantrum ohh no…p-l-e-a-s-e, not again when…spills and crockery shards splash the carpet for the thousandth time, and the harridan escapes my throat before I can swallow. Yes, it’s easy to fall back into being a mothering nag. Therein lies the dilemma.
I am not his mother. Don’t want to be. Never have been. Nor for that matter his sister. Standing behind him, I slide my arms under his. Encircle him. He turns to hug remembering belly touching belly. I nibble the underside of his neck. He blows a raspberry between my breasts.
“In sickness and in health,” we laugh suddenly in love again. “I’m sorry I yelled, my darling. I just can’t function on three hours sleep.”
“It’s hard being a caregiver, isn’t it?” a grey-haired woman in the car park tossed, as guiding her husband’s shuffle towards their car, he dragged on her hand. Wild wisps, lost hope escape the pins holding her hair. Wrinkles rut her cheeks. Her body hollow from giving calls for comfort. When next I saw her months had passed. She walked alone. The playful blouse she wore, flounced skirt, and lipstick pearling her lips proclaimed freedom reclaimed. Would that be me when…?
by the Perfect Servant
When we lose a loved one, what is it we want most.
In my cases, I kept saying over and over, “I want her back,” “I just want her back!”
Well, unfortunately it doesn’t work that way. As I found, as did many before me, death
is so final. It’s the end, it’s over, a life is just gone. There’s no bringing our loved one back.
So, what’s the next best thing.
How do we do that? Find those elusive dreams. It may be much easier than you think.
Research says, by laying on a bed of fragrant Rose petals, it is possible to have a sweet
dream. But, according to science, it is not possible to target a specific dream.
We grievers are not so much interested in a specific dream, we just want to see our loved
one–one more time. Perhaps, hold them in our arms. It is possible, you know.
If you are grieving, when life becomes so vivid, it seems surreal, you, my friend, are a good
candidate for some lost loved one dreams. (That was me) Your senses are already elevated
to a place where non grievers, can’t go. And that’s why folks don’t often understand grievers.
Our minds work from a higher level of consciousness, and can create a complexity to us that
others quite simply don’t, understand. But that’s okay.
I know, I know. It sounds like voodoo magic, or something out of a Science Fiction show. But, it isn’t.
It’s real, and perhaps you can do it too. At least give it a try.
Follow my lead on this, the truth
When Annie died, I was so broken and lost. I really didn’t care if I lived or died. Day to day without her,
was unbearable. The grief and loneliness would come at me like large waves, one after the other, hitting
the sea shore. And there was no barrier to slow them down. All my emotional reserves got caught up in
the world of cancer and had dissipated. I truly was wandering in the darkness without a shield.
Then, life happened.
One evening, not long after her death, when I laid down on my sofa, which was still about 5 feet or so from
her hospital bed, the place where she lived for 30 months, and eventually died, I noticed the sports bandage
she wore on her hand. She broke her pinky finger a few weeks before she passed and the sports bandage
provided good support.
She would rub Sweet Pea Jasmine oil on the sports bandage and wheel herself around the living room in
her wheelchair, wiping the oil on our cloth furniture and curtains, making our home smell beautiful.
The sports bandage was significant in that, I thought, that if I were to wipe some of the oil on my pillow,
it might invoke a dream of her, despite the scientific data saying otherwise..
So I got up off the couch and walked into the dining room where she kept her oil. I was absolutely shocked,
when I saw what I was led too. Her Angel perfume, that she wore for approximately19 years was laying
beside the oil. Instinctively, I knew or felt that I had stumbled onto something with so much potential. And
believe me, it turned out to be an experience, that to this day, was quite simply amazing, and certainly
altered my way of thinking, forever.
I laid down and said a prayer, asking the creator if I could see her one more time. I needed to know that she
was okay. Annie suffered many diseased and broken bones from her cancer. It left her legs very weak, and
unstable. Her spine had collapsed in the 3rd week of her cancer, which left her back, badly bowed. She was
always in pain and suffering.
I sprayed her perfume on my pillow case and laid down and eventually fell asleep.
It was a life altering, game changing, mind blowing, call it what you want type of experience,
and no doubt a gift to me.
Annie was standing beside her hospital bed, jumping around in the new pajamas I’d bought for
her, letting me know by turning from side to side that her spine was now healed and her legs were
strong and steady. I never saw her face, but I didn’t need to. I knew it was her.
My take on the dream–She wanted me to know that she was finally free of all the torment and pain
she had been suffering.
Annie and I started dabbling in Antiques in the 1970’s. And ended up running two successful antique
In one of my dreams, we were at a Flea Market and finding all kinds of treasures, little goodies, and
having a blast together. It felt as if she’d never left. But alas, all good things must end, some day.
I woke up in the morning, and became very disappointed when I realized that Annie was not beside me,
and the treasures, well, the dream was a treasured memory and will last a life time.
Over a relatively short period of time, I had various different dreams, and it seemed, all my questions
were being answered.
One of my dreams was very curiously strange, but still, it was a dream and better than nothing.
In this dream, I was sitting on our sofa in the living room. Annie came walking in with a beautiful skirt
and blouse on. Her face looked lovely and her eyes were smiling.
She asked me if I would like to meet her friends.
I said, “I would love too.”
Her friends came walking in from the kitchen area, one person at a time. There were seven of them.
The first person was a male, then a female, and so on. They all had big smiles, walked with rather
stiff legs, over to, and sat around our fire place. It was, kind of strange, they were just sitting there and
Annie! Those people are dead.
I know, their my friends.
I woke immediately. It scared me a bit at first, but as I gave it more thought, she sure looked beautiful and
was happy. Her friends, well, they must have been nice or she would not have been with them.
And I think, at that point, my subconscious was helping me accept the fact that she was no longer physically
with me, nor would she ever be. Of course, that’s my interpretation. “We must move on.”
When invoking dreams, one must take the good with the bad. If you were a caregiver for a terminally ill person
as was I, and witnessed as much trauma and pain as did I, you set the stage for quite possibly a psychic
traumatic dream. In other words, the dream is linked to psychic trauma. They’re not good dreams, nor uncommon
among folks that suffered from witnessing as much trauma as I. They can be very unsettling, but I believe they
were a part of my healing process.
I had a question that kept running through my mind. “I can’t let go of her, until she lets go of me.”
I spoke to my psychologist about those words, and he said in a soft voice, “Bob, she’s not holding onto you.”
Feeling very unsatisfied and unfulfilled, I did the only thing I could do. When I laid down that night, I said my
prayer, and asked my creator for clarification on my question. Then I sprayed my pillowcase with her Angel
perfume and closed my eyes and waited.
The dream I had was incredible.
Annie and I were running over what appeared to be a grassy slope. We were hand in hand, arms swinging
in unison, like a couple of kids. When the dream ended, we were standing on an old porch. Annie had let
go of my hand. There was a lady with dark hair standing in the doorway behind an old fashioned screen door.
I looked at her, then turned to Annie who had her hand extended to me. She wanted to slap hands. I reached
over and gently slapped my hand against hers. She gave me a beautiful smile, turned, stepped off the porch,
I believe Annie was telling me through my dream, that when I’m ready it’s was okay to move on. She’d just
let go of me.
My psychologist was right. I was hanging onto her, and she helped me understand that, “it can only or, will
ever be Annie and Bobby in my dreams.” It was a hard pill to swallow at the time, but I knew the clock was
ticking and if I didn’t fight the beast, called grief, I would get left behind. She was moving on.
Earlier, I mentioned it’s possible to feel you’re loved one. Here’s my one and only experience with her touch
and it was painfully beautiful.
(In all my dreams, with the exception of this one, when I mention, for example, Annie was holding my hand,
I have a visual of her holding my hand, but I can’t actually feel it.)
I was sitting on a stool near our large garage door opening, on the left side if you were walking up to the garage.
My daughter Melissa was with me.
My left arm started gently rising up for no apparent reason. I felt something take hold of my hand, gently
maneuvering me off the bench.
I said to Melissa, “Mom is holding my hand.” I couldn’t see her, but from her touch, and the feel, I knew it was
her. She started slowly and gently pulling me down the driveway, as if taking me on a walk. Melissa was following
behind us. We stopped and I put my arm around her side, feeling her body form as if it were real. By touch,
I could feel my arm around her body, and tell she had some sort of sweater on. So Amazing.
I said, “yes, I can feel you.”
She said, “Only for a painful moment.”
It was terribly painful feeling her touch, one more time, and having to let go.
To this day, I can still feel that touch in my memory. Not many folks can say that.
An if you’re curious, I documented these dreams after they happened. Being able to touch her, was
the dream of May 20th, 2011. Seven months post death.
On 6 July 2011, I stopped trying to invoke dreams. All my questions, the ones that troubled me the most
had been answered. And I was going to accept the gifts (dreams) for what they were. I knew nothing good
could come out of me continually trying to find her, as it was not going to happen. It was time for healing.
Still, I had dreams of her, but, most were segmented and hard to understand.
To this day, I still have dreams of Annie. Some are very good, some are bad, and some are noteworthy.
If you reread that last paragraph again, you’ll notice, I’m not talking about pain or suffering, trauma or anything else.
Because, I’m a survivor. Grief can no longer deceive, torment, or hurt me, and loneliness is now a product of my
own making. And, I can fix that if, and when, the notion strikes me.
One thing for sure. I will keep writing as long as my voice is not silenced, and I can help others.
My heart, soul, and spirit is vested into helping others now, and I see no reason to change that.
I wish you all, the best.
Visit Annie’s online memorial
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.