My Published Articles for ViewsHound: The Daily Struggles of Two Caregivers

Tuesday, March 17, 2015

The Daily Struggles of Two Caregivers

In my first posting about Caregivers, I emphasized that caregivers must have a break or help from others to prevent burning out. In this article I will describe in detail what my daily activities are and how I manage not to burn out. The second story is a conversation of myself and another caregiver of how she manages her life and at the same time taking care of her husband. She will remain anonymous for privacy reasons

One of my primary duties as the primary caregiver for my wife who has Parkinson's Disease is to help her take her medications on time. The second item is to insure she take balance meals and reminds her of her daily exercises. If its a good and sunny day, we will take a short walk around the house perhaps from 5 to 10 minutes depending in how she feels that day.

My wife needs help dialing the phone and putting on the TV. In the morning she is sometimes weak before she takes her medications. Later on in the afternoon, she feels better and will try to help me cook dinner. Before I know it is time to bed. This daily routine is only interrupted by our twice a month trip to the Casinos and Dinner. Her monthly beauty shop and quarterly trip to two doctors-a GP and a neurologist is another break in our daily routine. There are times when she feels like going to church or to the Filipino store after church, otherwise we attend mass in Television every Sunday. My son who lives with us and works full time help me takes care of his Mom on his day off. Without my son's help, I probably would have burn out by now. In between my care giving duties, I manage maintaining my blogs, writing activities, and play computer games(bridge) for my own mental health.

The following is a FB conversation between myself and a long long time friend who is also the primary caregiver to her husband suffering from a rare neurological disorder. For the sake of privacy I will just call her FBM and her husband Steve( not his real name)

"Hi Dave, Just started a while ago face booking and I saw your message. I am sorry I was not able to respond to you soon today. Great to be able to contribute on your new article about caregivers. Being a nurse helps me a lot understanding the medical "lingo" thrown at me whenever I take Steve to the doctors. Taking care of Steve and understanding his illness are challenging but I can handle them.

The hardest part I went through and is still is, is making decisions for every day problems, whether I should do this or do that without getting a second opinion from somebody I trust. I guess I was afraid to make a mistake then and even up to now with my decision making. An example is our rental house, which I am debating whether to upgrade the bathrooms and the flooring; will I have to increase the rent and how much? I guess we grew up in our culture that expects the man/husband to do the decision making for the family and that's how I got used to.

So, since Steve became ill, I have to learn fast and do all the decision making. Reading books, navigating the internet, talking with friends are my resources to increase my knowledge on problems/issues I have to solve.

Praying also helps me a lot to ease the burden of making a decision. Since I am able to leave Steve alone for 2-3 hours, I can see my friends for lunch or go do my errands which is a great therapy for me.I walk everyday as much as possible for half an hour for health reason. I still do the housework but I am not over zealous in keeping our house neat, tidy and clean.

I hired a gardener and a pool cleaner when Steve started to get sick so that has been a big help for me. My oldest son and family live closely so if in emergency I can call him or his wife to help me out. Just this week, my daughter in-law took my car to Modesto for front power window repair. I have a handy man who helps me fix little things in the house. I enjoy reading articles about caregivers and I know your article will be a good one for me to read once you have finished it. I hope my little contribution may add a little insight to your project. Love and regards to Macrine."

My response: Hi FBM, thank you so much for your reply. Your detailed response is much appreciated. I think, I will make a separate article on this. I will not mentioned your name, but your personal experience will be helpful to others who are in your situation. Again may I reiterate that as a caregiver, we should not forget to take care of ourselves otherwise we will burn out.

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Guest Article from Susan Creamer Joy

In The Silence, by Susan Creamer Joy.

Today's guest article is from Susan Creamer Joy. Susan is one of my favorite authors in the ViewsHound community. Susan writes, draws, paints and cobbles together art from found objects making a variety of creations from jewelry to religious shrines. She frequently sports burns on her fingers from her soldering iron, paint on her palms and ink under her fingernails, but her hair is usually combed. When she is not losing time in the creative vortex of her studio, she is likely to be putting her knowledge of metaphysics and esoteric principles including Tarot, numerology, astrology and graphology to good use in consultations. Her children are grown, her husband still works and her four dogs believe she needs serious help. The title of her article is "A Matter Of Love And Death". Thank you Susan.

By the time they reached my bedroom door, I was already sitting up – my stomach ratcheted in the tense grip of an unnamed anxiety; my pillow, unburdened of my drowsy head.

To this day I cannot explain how I heard them coming up those stairs in their bare feet or how I knew that my father struggled to hold his composure as my mother unnaturally clutched at the folds of her dressing gown and followed him through the dark just a little too closely.

As the wooden groan of those old stairs tore into my bones that morning like a hacksaw, all I could see between the predawn shadows was the letter I’d written just hours earlier to my boyfriend, Chris, propped against the lamp on my desk across the room awaiting an envelope.

I had not slept well. It was late November and there had been so many changes since the middle of August when he left for the Air Force in Texas to begin basic training and I began my third new school in as many years.

The conspiracy between fate and the last surge of the Vietnam draft had broken apart the every-waking-minutes of our two-year union with unceremonious indifference. All that night my sleep had been infested by difficult dreams and by the illogical fear that truth and reality were merging into a darkness only a martyr could grasp; and at sixteen, martyrdom seemed reasonable only for the nuns among the poor in Bangladesh

I tried to remind myself that he would be home on leave for Thanksgiving in another few days. It was the only tether to calm I could find, but reviewing the facts offered little relief from my baseless fears.

Chris had been girding his pacifist sensibilities preparing to fight in an unpopular war that had not yet slaughtered its last innocent. I was hovering just over the line of inclusion at an exclusive girl’s school – missing him – and finding myself at odds with these young women and their attachment to propriety and with the prep-school veneer that blinded them to the fact that they were no better than anyone else.

Neither one of us was coping well with the worlds into which we were respectively summoned, and although we both knew that the best hope for any future together depended upon our individual successes apart, it was far from comforting most days.

But in spite of our discomfort, we each did our best; and, of course, there were the letters: Thin, plain-paper sheets with row after row after row of inky blue words penned with the intensity and awkward locutions of a love learned too soon. It had come down to just that little, but without them, I would have had nothing.

Chris was learning to fly. I was learning to drive, and both of us were aching to transport our souls to an earlier time through the hallowed intercourse of memories and dreams. Of course, as with all progress, there was the positive element: We were both clean and drug-free for the first time in years.

Now, without pretense, both healthy cognition and sincere motivation surfaced regularly in my psychology and prompted me to care about myself and to arbitrate against all temptation for a better standing in the world, in school and in my own eyes. I even did my homework.

No longer was I escaping today but, instead, living for my day of escape. Lying still in the dark of my room, I listened to the slow, padded footfall of my parents approaching and looked to the floor and to my history book half hidden beneath the nightstand where I’d tossed it the night before. Even in this early morning dark I could make out the swirls and stars in colored marker and the bubble-formed letters that spelled C H R I S in soft, juvenile curves on the torn book cover I’d fashioned out of a brown paper grocery bag.

I vaguely remembered throwing it there somewhat hastily. I had been doing my homework when a sense of urgency struck and I realized I had not written him as I promised I would and glancing at the clock, I noted it was nine-twenty-three. Why that mattered I had no way of knowing in that strange moment, but within hours, it would be one I would never forget; and although I was becoming drowsy and still needed to finish my work, I felt beyond reason that my letter to him could not wait.

So, I wrote. I would always write. I would always be there. He would always be there.“Suzi."It was my name spoken in the smooth and familiar voice of my mother, although weighted and slow, her head bowed to her chest almost as though she were speaking only to herself.

"Suzi.” She said it again, this time with sharp gravity, like a chisel against stone.

As if on cue, I leaned forward, flanked now by my parents who were sitting on either side of my bed.

I had been waiting for them. I don’t know how. I didn’t know why. The lights in my room remained off, but it seemed that the darkness clung more to them than to me, as though they were holding it there – away from me to give me enough light to see through the next moment. They were crying. My father was crying. My father. “Suzi. We have something very, very bad to tell you." Chris has been in a car accident." And he was killed."

If the world moved forward from that moment, I could not know it. f there were air around me worth breathing, I could not take it in. And if there were another sound beyond the leaden bellow of my own raw grief, I could not hear it.

"Who am I going to talk to? Who am I going to love?” I wailed. Who will love me? In that sodden moment violated by the intrusion of a predawn light that had no business rising, everything I ever believed about happiness, hoped for in life, trusted in or held as my own was annihilated.

After that – there was no after that. After that came months of hollow redundancies that would inform my way of being in the world for years to come. A serial commitment to waking up each morning, remembering he was gone and dedicating the remaining hours to forgetting. To that end I would try anything, drink anything, ingest anything, inject anything. It was a slow and arbitrary suicide by indifference.

Many years later, at 25 years-old and in the midst of a pharmaceutical free-fall leaning dangerously close to terminal, I discovered that I was expecting a child, and after a decade of forgetting, I remembered. I named him Griffin after the legendary winged lion, a symbol of the divine because what he inspired and the miracle that he was, were nothing less. I remembered and I loved again, and I went on to marry and to the gift of two beautiful daughters.

Today my son is struggling not to drown in the same well of drug abuse and apathy that almost swallowed me – his great, divine wings clipped by his own hand; and while it is up to him to restore his place in the sky, I will do my best to help provide an open runway.

In the meantime, I will continue soaring for both of us; bequeathed as I have been, with a determination to fly from a boy whose ragged fate precluded that dream.

Death took one young man from me once upon a dark time. If it has any intention of coming for this one, it will have to go through me. And trust me, it will be in for one hell of a fight.

Note: If you enjoy this article, please let me know.

Tuesday, March 17, 2015

The Daily Struggles of Two Caregivers

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