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don’t let your words of comfort cause more pain

Yesterday found me rummaging around in a musty basement of an old antique store when I got the phone call from my weeping son about the massacre in a kindergarten in Connecticut.   I almost fell to my knees with the news, as we have a precious little 5 year old kindergartener in our family.   I could not imagine the horror facing those dear families, the long journey of pain awaiting them, for their sorrow will never be done.

Little beds that will never be slept in again.  Presents already wrapped and under the tree.  Barrettes found under the sofa next time the floor is swept.  A little car discovered in dad’s tool box next Spring.  Drawings scotch taped to the fridge, now and for always.  Little arms that will never again be wrapped around your neck.   No more whispers of “I love you, Mama.”

Grief.  Inexpressible grief.

Most of us want to help, we long to make it better for our friends who have been crushed by their own personal tragedy.  Sadly, however, too many of us add to the sorrow by saying the wrong thing …. “Heaven needed another little angel.”  Noooo!

I read an excellent article by Rev. Emily C. Heath in the Huffington Post this morning, and am including it here for everyone to read and pass along.  We mean well, but we have to speak well too.  Don’t let your words contribute to the grief, but let them be words of comfort.

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Dealing With Grief: Five Things NOT to Say and Five Things to Say In a Trauma Involving Children

Rev Emily C Heathby Rev. Emily C. Heath, Clergy United Church of Christ

We often have no idea what to say in the face of senseless loss. That is especially true when children are the victims of tragedy. Today’s shooting in Connecticut is heartbreaking in so many ways, not the least of which is the staggering loss of children.

My first two years in ministry were spent as a chaplain assigned to the emergency department of a children’s hospital with a level one trauma center. During that ministry I saw so many senseless tragedies. I also heard some of the worst theology of my life coming from people who thought they were bringing comfort to the parents. More often than not, they weren’t. And often, they made the situation worse.

Here are five things not to say to grieving family and friends:

1. “God just needed another angel.”

Portraying God as someone who arbitrarily kills kids to fill celestial openings is neither faithful to God, nor helpful to grieving parents.

2. “Thank goodness you have other children,” or, “You’re young. You can have more kids.”

Children are not interchangeable or replaceable. The loss of a child will always be a loss, no matter how many other children a parent has or will have.

3. He/she was just on loan to you from God.

The message is that God is so capricious that God will break parents’ hearts at will just because God can. It also communicates to parents and loved ones that they are not really entitled to their grief.

4. God doesn’t give you more than you can handle.

Actually, some people do get a lot more than any one person should ever have to handle. And it doesn’t come from God. Don’t trivialize someone’s grief with a “what doesn’t kill you makes you stronger” mentality.

5. We may not understand it, but this was God’s will.

Unless you are God, don’t use this line.

And here are five things to say:

1. I don’t believe God wanted this or willed it.

A grieving friend or family member is likely hearing that this is God’s will from a number of other people. Affirm the idea that it may very well not be.

2. It’s okay to be angry, and I’m a safe person for you express that anger to if you need it.

Anger is an essential part of the grieving process, but many don’t know where to talk about it because they are often silenced by others when they express their feelings. (For instance, they may be told they have no right to be angry at God.) By saying you are a safe person to share all feelings, including anger, with, you help the grieving person know where they can turn.

3. It’s not okay.

It seems so obvious, but sometimes this doesn’t get said. Sometimes the pieces don’t fit. Sometimes nothing works out right. And sometimes there is no way to fix it. Naming it can be helpful for some because it lets them know you won’t sugarcoat their grief.

4. I don’t know why this happened.

When trauma happens, the shock and emotion comes first. But not long after comes our human need to try to explain “why?” The reality is that often we cannot. The grieving person will likely have heard a lot of theories about why a trauma occurred. Sometimes it’s best not to add to the chorus, but to just acknowledge what you do not know.

5. I can’t imagine what you are going through, but I am here to support you in whatever way feels best.

Even if you have faced a similar loss, remember that each loss is different. Saying “I know how you’re feeling” is often untrue. Instead, ask how the grieving person is feeling. And then ask what you can do to help. Then, do it and respect the boundaries around what they don’t want help with at this point. You will be putting some control back into the hands of the grieving person, who often feels like they have lost so much of it.

Follow Rev. Emily C. Heath on Twitter: www.twitter.com/calledoutrev

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the very inspiring blogger award

Thank you, Trudy Metzger at http://trudymetzger.com/2012/08/06/the-very-inspiring-blogger-award/ for honoring me with this special award.

How very kind of you!

The Rules

Of course with a title comes responsibility, and so having already acknowledged the person who nominated me and posting their link above, I will gladly: (1) post the award to my page; (2) list seven things about me;  (3) nominate a few awesome blogs and let each of them know they’ve been nominated.

Seven Things About Me:

1.  I make mistakes all the time, apologize and appreciate the mercy and forgiveness received, and hopefully do the same for others.   If we don’t try new things, speak our heart, confront evil when we see it, we will never grow and be the people God wants us to be.

2.  My mother died at 60.   I am 60.  Every single moment I have from now until the day I breathe my last breath will be an incredible gift she was never given.  I won’t allow anyone to rob me of the joy of the moment any more.

3.  I love my family.   I am blessed to be loved by a wonderful man and have a son who adores his “almost 3” girls, and two amazingly brilliant and tender daughters, one born from under my heart and the other adopted through marriage.   Those grand babies just have to blink at me to melt me to my core.   They are God’s “second chance” for me.

4.   God redeems.  Every piece of pain I have lived through, every tough experience, every tear shed, will be used to help someone else if I give it to the One who got me through it all, instead of holding onto bitterness and the need to have revenge.   Forgiveness sets us free from the power of the people that hurt us.

5.   I love what I do.  Every woman who walks through my office door is a blessing to me, as I hope I will eventually be to her.   Her gift of trust to me is priceless.  As I watch her grow, become more confident and recognize the lies in her life, replacing them with Truth, it is like watching a rosebud unfurl as the heady fragrance encourages others to ‘come and walk in the light of freedom!’

6.  Every day I try to be the hands, feet & heart of Jesus.

7.  I’ve been blessed to live internationally for many years.  Never, ever complain about this imperfect land we are fortunate to live in, or the people who lead it, until you have lived in a third world country.  Living in fear is a reality there.  Be thankful for everything, and share.

Now, whether they choose to accept the award is not as important as my publicly acknowledging how these blogs have been a source of inspiration to me. They are not in any particular order:

http://www.runningchatter.com/

her.menutics at http://blog.christianitytoday.com/women/

http://thoroughlychristiandivorce.wordpress.com/

http://cindyburrell.wordpress.com/

http://hiddenplacessongsofdeliverance.blogspot.com/

http://www.kristamournet.net/

http://gracednotesministries.blogspot.com/

http://cryingoutforjustice.wordpress.com/

http://thebiblicalworld.blogspot.com/

http://speakingtruthinlove.wordpress.com/

This is only a few of the many inspiring and encouraging blogs I follow, and I encourage you to check them out. Many others deserve recognition as well.

losing a family member to alzheimers … long before they are old

It was really hard to watch my beloved husband’s mother retreat within herself.  The woman who used to busy herself constantly would hardly ever leave her chair.  She used to love crossword puzzles, and had a brilliant mind.  After she died, I found a paper accepting her into medical school.   She married instead.   Mom died of a brain bleed, but what really took her life was Alzheimer’s Disease.   Tragic for any family, but incredibly difficult when the victim is young.

Forty is young.

EARLY ONSET ALZHEIMER’S STRIKES FAMILIES FAST AND FURIOUSLY:

By Céleste Owen-Jones New York City

A man with Alzheimer's sleeps on the couch while his family watches Mike Henley surrounded by his family

Alzheimer’s is thought of as a disease of the elderly. But the early-onset form of the disease can wreak havoc for young people and their families.

On a fall day in Westbury, New York state, Brandon Henley, 18, hastily opens the front door of his small house. The nurse his mother has been calling all day has finally arrived to deliver urgently needed anti-seizure medicine.

Behind him, she notices on a recliner a frail man, eyes closed, under many blankets.

“Is that your grandfather?” she asks.

“No, it’s my father,” says Henley.

Mike Henley is 47. What hair he has left is white. He no longer has teeth and is so thin and pale that it seems he could vanish at any moment. He cannot speak, he cannot walk and no-one knows if he can understand what is going on around him.

Mike Henley has Alzheimer’s disease.

‘What about the kids?’

When he was diagnosed at 36, doctors said he would die within five to seven years. More than a decade later he survives. “Younger people’s bodies are stronger,” says his wife, Karen.

But young-onset Alzheimer’s also progresses faster than the disease in older people. Mike was diagnosed in 2001. By 2004 he was unable to speak and by 2006 he was unable to walk.

An estimated 5.4 million Americans have Alzheimer’s. Early-onset Alzheimer’s disease, commonly known as young-onset Alzheimer’s disease, afflicts people under 65 and accounts for less than 10% of cases of the disease.

In the UK, the Alzheimer’s Society provides statistics on all forms of dementia, noting that Alzheimer’s accounts for the majority of these cases. They count 800,000 people with dementia in the UK, including more than 17,000 younger people.

It is a small proportion, but an extremely aggressive form of the disease. The impact on patients and families is typically severe.

Once diagnosed with Alzheimer’s, younger people have scant time to organise their future. They face a lot of legal work: coping with insurers, arranging for Social Security and power of attorney.

Mike’s first question, when he learned he had Alzheimer’s, was “What are we going to do about the kids?” At the time, Courtney was nine years old and Brandon eight.

At first Mike and Karen decided not to tell them anything, “but they were already questioning why he wasn’t working anymore”, recalls Karen.

Continue reading the main story

Young onset v traditional Alzheimer’s

  • Severity: The symptoms of Alzheimer’s – memory loss, intellectual and behavioural disorders – take a more aggressive course in younger victims.
  • Speed: Rather than progressing over 10 to 15 years, as is the case with older patients, young-onset Alzheimer’s takes only a few years to reach an advanced stage. Mortality rates vary, but “people usually die after eight years,” says Yves Agid, a renowned neurologist and neuroscientist.

“I remember asking if mom and dad were going to get a divorce,” says Courtney. “I kind of picked up on a difference to how things normally were going. That was the only thing that I knew could be wrong.”

With the help of a child psychologist, Karen started to explain to her children that their father had an illness affecting his brain. She said that he might say or do things that he wouldn’t have before.

“It was one of the toughest days we ever had, one of the toughest things we ever talked about,” Karen says, quietly. Her son started to sob. “He asked if his dad was going to die. He was only seven.”

“How is it going, Daddy-o?” asks Courtney Henley. An aide is feeding her father his dinner. He gives no reply, no reaction. She continues speaking to him nonetheless.

“I don’t like when people talk to him like a baby, because he’s not a baby and if he can understand, it’s not going to help his self-confidence, it’s going to make him feel worse,” she says.

Courtney, a college student with a joie de vivre that defies her grim situation, sounds a lot more positive about her dad’s abilities than his vegetative state would suggest.

A family photograph The Henley family in 2002

“He definitely knows if it’s me, my mom and my brother, or one of his regular aides as opposed to a complete stranger,” says Henley. “He doesn’t eat well, or as well, with people he doesn’t know.”

All the Henleys have become caregivers for Mike, bolstered by the aides who come to their house every day since he entered hospice care.

“He’s incontinent so he has a diaper on, so that has to be changed,” says Courtney. “The aide does that in the morning. We do that at night.”

This winter evening, Courtney is preparing to go to a friend’s birthday party. But instead of primping and trying on outfits, she has to help her mother and brother put her dad to bed – a complicated manoeuvre. Mike has become very fragile and has developed painful bedsores on his back and hips.

With the help of two large bands of fabric placed under Mike’s back and legs, Brandon and Courtney struggle to lift him from his chair.

Then Karen starts Mike’s night-time treatments: she changes his clothes, massages his emaciated hands with cream, installs his nasal breathing tubes.

When all that is finished, she settles Scruffy, Mike’s protective teddy dog, over his blankets.

Throughout, Brandon lies next to his dad playing games on his new iPhone.

Role reversal

To most adults, let alone children, the situations the Henleys face every day would be hard to bear. That it often affects families with young children is just one of the distinguishing factors of young-onset Alzheimer’s.

Little is known about the needs of children in early-onset families. But these children are going through a profound role reversal, which can lead to confusion and fear.

“It makes them feel that it’s something they’re doing, that it’s their fault,” says Caroline Rosenthal Gelman, associate professor at Hunter College in New York. These children have to deal with both the disease and the anxiety and distress it causes their other parent.

“It’s a loss of both parents, in a way,” she says.

Not everyone seems to cope as well as Courtney and Brandon Henley.

Leo Dzwil, diagnosed with young-onset Alzheimer’s four years ago at 51 is the father of two teenagers.

At the time, son Michael “pretended that everything was the same”, says Leo’s wife Corrine, but had uncharacteristic behavioural problems. Eventually Michael recovered, though his dad didn’t.

Continue reading the main story

The genetic dilemma

Composite of brain scans

Familial Alzheimer’s is caused by a genetic mutation that can occur in more than 100 genes.

These gene mutations “increase the deposition of amyloid on the brain”, says Scott Turner, Professor of Neurology and Director of the Memory Disorders Program at Georgetown University. These amyloid plaques increase the risk of contracting Alzheimer’s.

When one such gene mutation is spotted on a DNA test, the patient is almost 100% sure of contracting Alzheimer’s. However, allowing people to get tested before they display any symptoms presents an ethical issue, says Turner, because “there are no ways to prevent Alzheimer’s if you have the gene.”

Today, Leo Dzwil lives in a nursing home on Long Island. He no longer walks and barely talks. He sits in a chair all day, with his eyes almost always closed.

“It’s very, very hard to see,” Corrine says quietly. “My son, he went in July and said ‘I’m not doing this anymore.’ And he hasn’t.” Corrine’s daughter, Lauren, now 23, went in November and decided that was the last time.

“It’s not that I don’t care,” says Lauren, “I just care too much.”

Children who witness a parent struggling with Alzheimer’s also have to confront the daunting fact that they too may be stricken at an early age.

The young-onset forms of Alzheimer’s disease have hereditary factors in 15-20% of the cases, says neurologist Yves Agid.

Mike Henley’s case is one of those: his mother died of young-onset Alzheimer’s. So did one of his brothers. The other brother is fine, so far. Because Mike has a the genetic mutation that leads to young-onset Alzheimer’s, there is a 50-50 chance that Mike’s children could have it too.

“I don’t really think about it too much,” says Courtney, calmly stroking her father’s hand. She has declined to be tested.

If her mother had known Mike carried the familial gene when they married, they wouldn’t have had children. That’s also why Courtney doesn’t want to know. “I don’t want to have it impact my life decisions.”

Sleepwalking brain

By the time he’d turned 51, Leo Dzwil could no longer figure out how to close a side table, something he had been doing for 20 years. His wife knew something was wrong.

Doctors diagnosed the problem as stress.

“I was told that I should have nice warm dinners for him when he came home,” his wife says. It took another year and a different doctor to finally diagnose Leo with young-onset Alzheimer’s disease.

Leo’s brain was shrinking very fast: his brain activity when he was wide-awake was equivalent of that of a normal person asleep.

“Young people with Alzheimer’s have a tremendously hard time getting a diagnosis,” says Lauren Tiede, the early stages co-ordinator for the New York City chapter of the Alzheimer’s Association.

Continue reading the main story

Hope on the horizon?

People with familial Alzheimer’s disease – but who do not yet have any symptoms – will be for the first time given a preventative drug, US officials announced on May 15th.

Most participants in this five-year clinical trial will come from an extended clan of 5,000 Colombian people – the world’s largest family to have Alzheimer’s, and in most cases in its early-onset form.

Even though only a small percentage of people with Alzheimer’s have the mutation that triggers young-onset Alzheimer’s like in this Colombian family, experts expect this trial to yield results that could shed light on Alzheimer’s disease in general.

“It takes probably a second, third, fourth opinion.” Many of her young clients were at first diagnosed with chronic stress, overwork, depression, even schizophrenia, Tiede says.

Failure to get the right diagnosis, beyond emotional difficulty for young-onset families, also brings great financial distress.

Medicare, the US federal health insurance programme for people over 65 and some younger ones with disabilities, only takes effect a year after a person has been declared disabled.

Leo Dzwil enrolled in Medicare and received his first reimbursement only in December, though he’d lost all self-care ability more than a year earlier.

Even when diagnosed, young-onset patients can still be denied Social Security disability income, which requires a diagnosis proving they are incapable of working.

Administrators have a hard time believing that someone so young, with no apparent physical disability, can’t even find a manual job, says Lauren Tiede of the Alzheimer’s Association.

Young-onset Alzheimer’s disease was only added in February 2011 to the Compassionate Allowance programme’s list of medical conditions that always qualify for financial benefits.

Yet financial support is essential for the survival of families affected.

There is “no pension to fall back on. There’s no retirement fund. There is no saved-up money,” says Courtney Henley.

“Just imagine when you are 36,” says Karen Henley. “You know, you really are just starting your life out, you are really just starting everything.”

The Henleys went from living on two salaries to one. Karen still works as a legal assistant for a real estate attorney, but her income declined as the housing market fell.

Around the same time, Courtney and Brandon were looking for colleges. “That was pretty much how I determined where I was going to go: it was the place that was going to give me the most money,” says Courtney, now majoring in film at Hofstra University, close to home.

‘A giant toddler’

Corrine Dzwil’s daughter, Lauren, wants to go to nursing school because of what’s happened to her father. But Corrine can’t help her pay tuition.

“I feel like a criminal!” Corrine says, indignant about having to explain all her expenses to Medicaid, the US federal and state insurance programme for people with low incomes.

“If I save anything for my daughter, they want to know why I’m gifting money.”

Composite shot of a father and son before and after Alzheimer's Mike and Brandon Henley before and after Alzheimer’s

It was Leo who was the major breadwinner as a successful district manager at a grocery store. Today, all the money he receives from his early pension, Social Security and disability pays for his nursing home.

Corrine receives no compensation for the loss of the family’s main income.

“I don’t know how I’m going to retire,” she says. “I don’t want to be a burden to my kids down the line. The money they are taking was the money we were planning on retiring with.”

While most young-onset families face extreme financial distress, states struggle to cope with a growing number of older patients.

As life expectancy increases, so do the number of people with neurological disorders: today, about one in eight Americans aged 65 and over has Alzheimer’s, and nearly half of the people aged 85 and older.

Alzheimer’s costs the US an annual $183bn (£117bn) and poses a critical challenge to Medicare.

Few states feel able to give patients and their families the financial help they need.

At the beginning of 2011, as Leo Dzwil’s condition deteriorated rapidly, he became aggressive at times and incapable of taking care of himself or being alone at home. In his wife Corrine’s words, he had become “a giant toddler”.

Corrine, who had to continue working, made the decision to move him to managed care.

Despite the high costs, it can be difficult to find quality care. At first she was paying $5,000 a month.

“I’d go and he’d be filthy. Filthy. Not just a little dirty,” remembers Corrine, tears filling her eyes.

After a few months she withdrew her husband and placed him in the nursing home where he lives today. Nursing homes tend to cost around $6,500 per month, and sometimes much more.

She feels guilty about placing her husband in a home. “I couldn’t stand looking at how awful my husband looked after a while,” says Corrine quietly. “I was depressed and I needed to just get away from it.”

Lives forever changed

The Henleys decided otherwise. With Mike moved into the communal rooms, his family had to constantly live with Alzheimer’s disease.

They also have to accept the healthcare worker who comes every day. “It was almost like we had some strange guest over all the time and we had to be very nice,” says Courtney.

“Before Mike’s illness, and even with two young children, I always kept a neat home,” Karen wrote in an email.

“Now, I don’t have the time or money to put into keeping it neat. I am a proud person and I do get embarrassed about the way my home looks.”

Piles of laundry engulfed the kitchen; boxes and clothes blocked the stairs.

The tiny playroom became Mike and Karen’s bedroom, and a hospital bed where Mike took his afternoon naps occupied the living room. Objects once stored in these rooms migrated to the dining room.

But after years of adjusting, the family now must confront yet another massive change: in February, Mike passed away, 11 years after his diagnosis.

“Caring for Mike had been our life… and half the kids’ life,” says Karen in an email. “Now that he’s gone, there is a huge void and it will be quite some time before we find a new normal.”

Girl with dog sits on couch while father with Alzheimer's sleeps Courtney Henley has spent more than half of her life dealing with her father’s Alzheimer’s

Mike’s brain was given to Alzheimer’s research, just as he had requested.

At a nursing home in Long Island, Corrine Dzwil knows where to find her husband.

She walks past old people sitting in the corridor, looking lost. Leo is sitting in a chair in front of a television, with three other patients, including one moaning incessantly.

None of them are paying attention to the screen. “Hello Leo,” says Corrine affectionately.

His eyes are closed and his head bowed, but he seems awake. Corrine starts gently stroking his neatly combed white hair, silently, looking at him tenderly.

Though he’s now lost a lot of weight, has swollen hands and looks much older than his 55 years, you can still see a glimpse of the charismatic man Corinne remembers fondly.

Twenty minutes after arriving at the nursing home, Corrine says goodbye to her husband. No reaction.

Tears start filling her eyes. “It’s like that every time,” she says with sad resignation. “There’s no point.”

Still, she comes back every week.

Celeste Owen-Jones is a French-British journalist who lives in NewYork. She can bereached at celesteoj@gmail.com and on Twitter at @CelesteOJ.