Why Does It Have to Be So Hard?

“I don’t get it. Why is so hard to do good work?”

“I don’t know, honey,” my husband said. The creases in the corners of his beautiful brown eyes deepened, indicating he was trying to think of something to say that might help me with my struggle to understand why offering loving care to his father was always met with such resistance. He didn’t come up with an answer that night and neither did I

For weeks I prayed and asked God that same question. Why does it have to be so hard?

I got my answer one Sunday morning. When the priest began to speak after reading the gospel, I felt that he was talking directly to me.

“I’ve been hearing the same question over and over lately. ‘Why is life so hard? Why is it so difficult to do good works?’ A chill ran through me. God had heard my cry.

“I’m here to tell you,” the priest lectured, “No one ever told you it was supposed to be easy. There are many examples in the Bible of people being tested to their very limits. It’s in adversity that you grow in spirit. It’s when you step up and do the hard stuff God asks of you that you earn your place in heaven. So quit whining and do what you know has to be done and remember you are not alone. He is there for you when you need Him.”

After that, when things got very hard I tried to make light of it by telling Mike, “I earned my place in heaven today.” He believed it, even when I didn’t.

At first I couldn’t take the words of the priest to heart. I wanted a better answer. But, as things went on and the more I repeated the words, “I earned my place in heaven today,” the more at peace I felt. I was not alone. God was with me and by doing the hard work I was earning the grace to make it possible. Not easy. But easier. What I thought in moments of weakness and exhaustion to be impossible became possible. Being a caregiver is not a job that we can do alone. We need help from our community, our family and our friends and in the moments when all of them are too busy or too far away there is one who is always there.

 “Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.” Joshua 1:9

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Interview with Clarke Pollard of Alzheimer’s Support Network

 

Also Participating in the Interview

Marianne Troy (in the middle) and Debbie Fulton

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It’s Not Always Alzheimer’s – Parkinson’s and Dementia

Parkinson’s Disease and Dementia: A Caregiver’s Primer
By Leslie Vandever

Parkinson’s disease is a gradual, progressive, degenerative disorder of the central nervous system. It causes nerve cells in the brain to stop producing enough of the chemical dopamine, which is vital for regulating movement.

Parkinson’s diseases causes tremors, muscle stiffness, slowed movement, impaired balance, and problems with standing, walking, and gait, and reduced facial expression.

Other symptoms—called non-motor or dopamine non-responsive symptoms—may include cognitive impairment, trouble sleeping, mood disorders, constipation, problems with speech and swallowing, low blood pressure when standing, unexplained pain, drooling, and the loss of the sense of smell.

Dystonia—an involuntary, prolonged muscle contraction—is also common with Parkinson’s disease. Sometimes associated with pain, like cramps, dystonia can involve an isolated area or the entire body. Caused by a lack of dopamine in the brain cells, dystonia is generally treated with L-dopa (levodopa), a medication that raises dopamine levels.

Another symptom, dyskinesia, is “a difficulty or distortion in performing voluntary movements,” according to the Michael J. Fox Foundation for Parkinson’s Disease, This one, however, isn’t caused by the disease itself. It’s a side effect of long-term therapy with levodopa.

Depression and other mental health issues are also common.

Around a million people in the U.S. live with Parkinson’s disease, and about 5 million worldwide. One in 100 people over 60 get the disease, but people as young as 18 have been diagnosed. Men have a somewhat higher risk of getting the disease than women.

Scientists don’t know what causes Parkinson’s disease, or why some people get it and others don’t. Over the last 10 years researchers have started to find evidence that genetics and environmental factors, either by themselves or combined, may be involved. Most scientists agree with this theory.

There is no cure for Parkinson’s disease. But the research into better treatments—and eventually, a cure—is ongoing.

The disease is, by itself, a hugely disruptive—even devastating—turn in the life of anyone diagnosed with it. The same goes for the caretaker. As Parkinson’s progresses, the caretaker must manage medications—many of which are taken on a careful schedule that can’t be disrupted without causing consequences—and at the same time, help the patient cope with the characteristic physical and mental symptoms of the disease. It can be, in a word, exhausting.

Now, add progressive dementia into the mix. It strikes a minority of Parkinson’s patients, either in the form of Parkinson’s dementia or Lewy Body Dementia. “LBD” is the umbrella term for both, though their earliest symptoms differ. Generally, people whose dementia occurs within a year of their Parkinson’s diagnosis are also diagnosed with LBD.

Lewy Body Dementia is named for the scientist Friedrich H. Lewy, who, in 1900, discovered these abnormal protein deposits (bodies) in the brain. They disrupt its normal functioning, including perception, thinking, and behavior. LBD strikes each person differently, and the symptoms can fluctuate from hour-to-hour and day-to-day.

Symptoms may include impaired cognition, attention, and alertness; well-formed, detailed, recurring hallucinations; hallucinations of touch and hearing; visuospatial abnormalities; and loss of consciousness and falls. They may also include REM sleep behavior disorder (RBD), in which the patient may act out his dreams while sleeping.

Caregivers for people with Parkinson’s disease and RBD should, first and foremost, take care of themselves, both physically and mentally. It’s a huge task and responsibility. Don’t be afraid to ask for support from family, friends, and from your community. You can find a lot of information about both diseases, and where to get help, in the references below and by visiting Healthline.

Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in the foothills of Northern California.

References:
• Coping with Dementia: Advice for Caregivers. (n.d.) Parkinson’s Disease Foundation. Retrieved on July 17, 2014 from http://www.pdf.org/en/spring03_dementia
• Caring for Someone with Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/content/caring-someone-parkinsons
• Dementia and Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/dementia
• Parkinson’s Disease and Parkinson’s Dementia. (n.d.) Helpguide.org. Retrieved on July 17, 2014 from http://www.helpguide.org/elder/parkinsons_disease.htm
• Whitlock, C. 5 Caregiving Tips for Lewy Body Dementia. (2013, March 15) National Parkinson Foundation. Retrieved on July 17, 2014 from http://www.parkinson.org/Caregivers/Caregivers—On-The-Blog/March-2013/5-Caregiving-Tips-for-Lewy-Body-Dementia
• Parkinson’s Disease. (2014, May 28) Mayo Clinic. Retrieved on July 17, 2014 from http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
• NINDS Parkinson’s Disease Information Page. (2014, July 14) National Institute of Neurological Disorders and Stroke. National Institutes of Health. Retrieved on July 17, 2014 from http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm
• What Causes Parkinson’s? (n.d.) The Michael J. Fox Foundation for Parkinson’s Disease. Retrieved on July 17, 2014 from https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?causes
• What is LBD? (n.d.) Lewy Body Dementia Association, Inc. Retrieved on July 18, 2014 from http://www.lbda.org/category/3437/what-is-lbd.htm

Just Because I’m Mad

Just Becasue I'm Mad

Or that I’m a bad person not fit to be a caregiver.

When I felt angry and resentful for the first time it was devastating. Where was it coming from? Why was it coursing through me when the crisis had passed and things were getting better?

“What’s wrong with me?” I cried and I prayed.

The guilt that accompanied those feelings threatened to overwhelm me. I didn’t know if I could go on. If I should go on. I was ashamed of myself for being so weak.

What I didn’t understand was that my feelings were normal. The anger was a passing storm sweeping away debris that had been piling up inside me. It was a way to release the stress and worry that comes with being a caregiver.

I loved Rodger very much, even when it wasn’t easy to do so, and he felt the same way about me. What mattered in the end was not the passing storms  but the  love that inspired the commitment I made to care for him and the trust he had that I would be there when he needed me.

I smile every time I look at the picture that inspired this post. How fitting it is for caregivers and everyone else. It applies just as well to parents and children, husbands and wives, friends, brothers and sisters, everyone we care about enough to invest our emotions in. I hope everyone I love will always know, “Just because I’m mad, doesn’t mean I stop caring.”

A Few Kind Words

Kind words echo

Caregiver be kind to yourself. Don’t judge yourself harshly or second guess the decisions you make. Every day you do the best you can and no one can ask for more, not even you.  Mornings, as you prepare to care for loved one, remember these words by Mother Teresa and know you are not alone.