How Much Can We Handle?

broken caregiver

It’s a sad truth that being a caregiver can break us. We don’t need to read the statistics to know that caregiving comes with a cost to our health, our relationships and our self-esteem. We do a job we know will end in incredible loss. We cannot win no matter how hard we try.

Those who don’t understand criticize our decisions and question our intentions during brief visits where the person who called us vile names and lashed out at us all night sits smiling quietly and complains about how we treat them.

And so we break. Sometimes for just a moment or two, other times we pray for days to find the strength to face the morning and start anew. And for some it all becomes too much and we become ill ourselves.

In my case as things became more complicated and the stress built I had panic attacks and migraine headaches. My hair began to fall out. I needed respite care. As a disabled veteran receiving all of his care at a VA hospital Rodger was entitled to receive care in the hospital for up to 30 days a year, no longer than 14 days in a row.  We used it when we could but there came a time when we were told there were no beds available and respite care was suspended.  I was desperate for rest and kept asking only to receive the same answer.

“There is no room.”  That is until the day I spoke these words, “I need respite care for his sake and mine. If it can’t be arranged I will call my congressperson and if that doesn’t work I will have to admit him to the VA hospital nursing home permanently.”  Two days later a bed opened up and we both got the break we needed.  It shouldn’t have come to that. I know many caregivers don’t have that option and for them taking a stand will not make respite care available. We need to change that or there will be many more broken caregivers and who will care for them?

The following is fromCaregiver.org

Impact of Caregiving on Caregiver’s Physical Health

  • While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities.
    [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving]Updated: November 2012
  • Research shows an estimated 17-35% of family caregivers view their health as fair to poor.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.]Updated: November 2012
  • Those who are more likely to rate physical strain of caregiving “high” are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don’t live together).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.]Updated: November 2012
  • 11% of family caregivers report that caregiving has caused their physical health to deteriorate.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
    • 21% of older caregivers caring for those 65+ report a higher degree of physical strain, compared to 13% who are younger.
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012
    • Women (16%) more than men (11%) report having more stress in caregiving responsibilities, (4-5 on a 5 point scale).
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012

 

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NaBloPoMo November 2014

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I Don’t Think I Can Do This Anymore

I felt that way so many times in the seven years I spent as a caregiver for Rodger. I cried and vented and wished for more wisdom daily. I saw every setback, every new symptom, and every dreadful new diagnosis as a sign of failure on my part.

Scalded by guilt, worn down by his refusal to trust me, I resented him. Fearing where this spiral would take us and knowing any chance of respite care was weeks away, I began to pray. There were no miracles for us. He was not cured. I did not develop the patience of a saint. But it helped me understand, again, that he and I were not alone. And in that moment that’s exactly what I needed.

Dear God

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The Face in the Mirror

Caregiver in the mirror

Image Courtesy of the Caregiver Space

Reflections on Caregiving

by Bobbi Carducci

The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.

Everything changed.

The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?

Time passed.

Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.

You are gone.

The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.

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He Was Home For A While

Frail and with growing memory problems, Rodger kept us on our toes as he struggled to navigate through a world that refused to make sense. Routine was vitally important; without it he wound down into confusion so complete all movement came to a halt. He was stuck somewhere in time.

Years after moving into our home, we would come upon him staring into space, mumbling softly about a missed appointment made fifty years ago or reliving a day in the life of a long ago soldier.

Sometimes with pity, always with patience, I would gently bring him back. “Orienting him to time and place,” as the doctor said.

His favorite room was the kitchen. Small and bright with sunshine, it opens onto a view of the Blue Ridge Mountains. Hills he called them, telling me about the fabulous peaks he once climbed in the mountain ranges of Italy. For a short time his memory was as sharp and clear as the cold mountain air of days gone by.

Elegant Mountain Ranges, Italy

A charming boyish smile crossed his face as he spoke of his mother making polenta before going to church each day. Of rolling up the rugs and dancing on Saturday night in a kitchen glowing with firelight and youthful dreams.

In the kitchen, with no need of persistent voices orienting him to time and place, he was able to move. He was home again.

Hold on to the precious moments when they come for they are the blessings we receive from those who cannot thank us.

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A Year of The Imperfect Caregiver

It was one year ago today that The Imperfect Caregiver blog appeared for the first time. Within days I started hearing from other caregivers and caregiver bloggers and with each new connection I learned more about how enormous this community is and how little the people around us know about what we do and the impact it has on our society.

As a writer I try to inform through story telling. In doing so I hope to connect with caregivers and the people around them. So often our family members don’t understand what it’s like to care for a seriously ill loved one twenty-four hours a day for a period of many months or years.

Siblings live far away and can only visit once or twice a year. Others have demanding jobs that keep them too busy to help. Families aren’t perfect, many have troubled histories filled with anger and resentment. A son, daughter, mother or father may have good reason  to stay far away from someone who abused them in the past. Still someone must step up and when that someone is you your life changes dramatically. Even when the person you care for is a treasured spouse, parent or child the constant demands can become too much and the caregiver begins to fall apart.

Quotes by caregivers include:

“I haven’t had a good nights sleep in 4 days! I just want to walk away from it all, but I won’t.”

“Oh lord, I think my family might be on the verge of working as a team. Please make it true.”

“This is taking a toll on my marriage of 31 years and its breaking my heart.”

“I want my mom back. This is a nightmare.”

“I go along with her delusions, she’s upset. If I try to tell her the truth, she’s upset. Nothing is helping.”

“I’ll never understand the disease…but today I’m at peace. I pray you all are blessed with these rare moments too.”

And here’s a quote from me about one of the hardest days I had as a caregiver:

“I put my head in my hands and I cried. It wasn’t a dainty cry with gentle tears moistening my cheek. It was a hard-driving, gut wrenching, chest heaving, sloppy, ugly, sobbing cry. My nose ran and my eyes burned from the force of it and there were moments when I thought I might never stop. But I did. And then I started again. And again after that. And again after that, until my eyes were nearly swollen shut and my head pounded and my heart stopped aching. I cried. I let it out. But you know what? That didn’t make me weak.I was still the caregiver and I was thankful. … I was thankful for a good hard cry.”

As you can tell from these comments caregivers don’t have all the answers nor do they have unlimited resources or energy. They simply do what needs to be done. And that takes a very special person.

wisdom and energy

If you know a caregiver reach out and lend a hand to help or an ear to listen and let him or her know they are not alone.

Thank you for following The Imperfect Caregiver.

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ELDER RAGE

Elder Rage: How to Survive Caring for Aging Parents
By Jacqueline Marcell, Author, ‘Elder Rage’ www.ElderRage.com

For eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, ‘Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.’

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was heart-breaking as one minute he’d be my loving dad and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors, only to be flabbergasted when he could act completely normal when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and P.E.T. scans. After ruling out numerous reversible forms of dementia, such as a B-12 and thyroid deficiency, and evaluating their medications, I was stunned by the diagnosis of Stage One Alzheimer’s in both of my parents–something all their other doctors missed entirely.

What I’d been coping with was the beginning of Alzheimer’s, which starts very intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own engrained bad behavior of a lifetime of screaming and yelling to get his way, but that it was coming out intermittently in inconsistent spurts of irrationality. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer’s makes up 60-80 percent of all dementias and there’s no stopping the progression nor is there yet a cure. However, if identified early there are four FDA medications (Aricept, Exelon, Razadyne and Namenda–and many more in clinical trials) that in most people can mask dementia symptoms and keep the patient in the early independent stage longer.

Once my parents were properly treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s aggression, I was able to optimize fluid and nutrition with much less resistance. I was also able to manage the rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I also learned to just go-with-the-flow and let hurtful comments roll off. And most importantly, I was able to get my father to accept two wonderful live-in caregivers. Then with the tremendous benefit of adult day health care five days a week for my parents and a support group for me, everything finally started to fall into place.

Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a ‘normal’ part of aging. Since one out of eight is afflicted with Alzheimer’s by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and help educate patients and families so everyone can save time, money–and a fortune in Kleenex!

TEN WARNING SIGNS OF ALZHEIMER’S
www.ElderRage.com/Alzheimers.asp

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Jacqueline Marcell is the author of ‘Elder Rage’, a Book-of-the-Month Club selection receiving 480+ 5-Star Amazon reviews, 50+ endorsements www.ElderRage.com/review.asp, is required reading at numerous universities for courses in geriatrics and considered for a film. EXCERPT: www.ElderRage.com/samplechapter.asp. She is also an international speaker on Alzheimer’s, as well as breast cancer which she survived after caring for her parents. She also speaks on caregiver stress and illness, and Alzheimer’s now being termed ‘Type 3 Diabetes’, the Obesity Epidemic and Sugar Addiction. www.ElderRage.com/speakingengagements.htm

Doctor, can you hear me?

Patient safety

To a doctor schizophrenia is: “A long-term mental disorder of a type involving a breakdown in the relation between thought, emotion, and behavior, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion, and a sense of mental fragmentation.”

For his psychiatrist the treatment for Rodger entailed medication to control his symptoms and regular visits to assess his thoughts and behavior. He was treating the disease. Every three months Rodger would assure him he was taking his medication and he was not experiencing hallucinations or hearing voices.

“She worries too much. Don’t listen to her.”

At home I was dealing with the illness. Despite Rodger’s insistence that everything was fine, I knew it was not. He paced the upstairs hall day and night, muttering and gesturing. I found him on his hands and knees trying to catch something scooting across the floor. Something only he could see. I reported all that and more to his doctors on every visit.

They listened to him. They got tired of hearing from me.

I knew when he was hearing voices. It was evident in a certain tilt of his head as he listened to the silence around him and in the sudden bursts of laughter when he was alone in his room. They goaded him into seething resentment when I insisted he take his medicine resulting in accusations of mistreatment.

“The others are here.” I’d tell myself, bracing for a difficult day. For weeks I watched as his behavior deteriorated. I scheduled appointment after appointment.

“She worries too much. Don’t listen to her.”

The doctor treated the disease the only way he knew how. More medication. It didn’t work. We didn’t know he was hiding it in his cheek and spitting it out.

The others came again and again. Then they stayed. Relentless. Aggressive. Unyielding. He broke. His mind a cyclone of confusion and suspicion.

He arrived at the hospital in the back of police car.

“Why did you wait so long to bring him in?” the admitting doctor asked. “He is in desperate need of treatment,” he added before calling for an orderly to take Rodger to the psychiatric ward.

I’d been telling them that for weeks. I was the one who worried. I was the one they should have listened to. Where they saw only the disease I was living with the illness and he paid the price.
Doctor, please hear me. Listen to the caregivers and heed their concerns. Caregivers see what you do not see. Caregivers hear what you do not hear. Caregivers live with the illness and that is often far more difficult than treating the disease.

Caregivers, do you find it difficult to communicate with your loved one’s doctors?
Do they heed your loved ones when they minimize your concerns?

Have you found a way to communicate with medical personnel that works for you and your loved one? Please share your comments in the space below. I’d love to hear from you and maybe the doctors would too.

Click here for an excellent post on this subject on The Caregiver Space.

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When a Loved One Hears Voices, But No One Is There

Click on the link below to read my guest blog about mental illness on AgingCare.com

http://www.agingcare.com/Articles/when-a-loved-one-hears-voices-165928.htm

If you have a comment or suggestion on dealing with a loved one with mental illness or dementia please post in the comment section below.