Home Again

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How do you Cope, Manage Stress, and give Care? Can you do this, and if so, How do you Become Better?

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Non-disease-specific Caregiving – that’s what makes this support system different. What does that mean? The Caregiver’s Manual for Men (CMfM) offers Generic Advice for assisting Men to Become Better Caregivers. Is it for Men only? No. But if people become better caregivers, chances are that women and men will receive better care. Maybe it should be titled, “The Caregiver’s Manual for People”? Or “The Caregiver’s Handbook for People”? “The Caregiver’s Blog for People”? The key is to tap into disease-specific-resources and eliminate unrealistic expectations. Good Communication is the goal. We would like for sponsors to step up and arrange this to become a dedicated domain so that you (readers) are neither bombarded with advertisements nor requested to make donations.

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Not everything you will read here will apply to your specific circumstances. Generally speaking however, be ready to encounter examples and thoughts which could help describe your situation in words.

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The following are only excerpts. You can read the full texts at

CMfM Volume 1: How to Love a Cancer

and

CMfM Volume 2 Interaction with (How to Love) a Prisoner

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Future Works are planned. We need additional Volumes of “How to Love” topics which develop the understanding for myriad care-giving situations. People are not breakable and we don’t need to be fixed; people might feel lost and overwhelmed or even frustrated, angry or sad. Any source of support will be of help. Armed with this awareness, we need links to specific organizations that will help us give support to persons with chronic illness, serious diseases and life-threatening conditions.

(V1) How to Become a Better Caregiver

(from CMfM – Volume 1: How to Love a Cancer By Dan Zeorlin)

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Being a caregiver can be overwhelming at times. And becoming a better caregiver involves some discipline and hard work. The hardest part about being the caregiver of a person living with cancer is dealing with feelings of helplessness. That’s why it is important to develop the ability to make a difference in ways that are meaningful to your loved one.

When Linda detected cancer, some of our roles reversed. I became more supportive and loving. I learned to trust and was inspired by Linda’s faith. I lived with a heightened sense of endearment and tenderness. We achieved greater harmony as a couple and were blessed with forgiveness, growth, and peace.

We shared the experience of various stages of cancer–discovery, treatment, and recuperation–and did not become fixated on the cure. The clinicians did their part in monitoring progress; as a caregiver, I learned how to do my part by bringing the following positives into focus.

Advocate for Change–A caregiver becomes an advocate for change. Resolve to make a plan and stick to it. Caregivers cannot be passive observers and must act when change is required. Learn to identify your dependent’s needs and wants. Make lists of “Where To’s, How To’s, and To Do’s” so that whenever the moment becomes “too much” you’ll be able to find necessary relief without losing your momentum.

Change Your Perception–Caregivers are affected by many experiences, real and perceived. My wife’s cancer was real; the idea that cancer was bad or an unrecoverable event was perceived. The feeling that I was alone, denied companionship, without support, and deprived of recourse was ridiculous but also a perception. So I spent energy convincing myself that our situation was not hopeless. Caregivers must shrug off the impossible and concentrate on those things that are still viable. Therefore I needed to learn a great deal of patience while I became a more compassionate caregiver.

“I should wait until after they leave to purify the house with antibacterial spray.”

Focus on Priorities–Learn to let go and do things out of love. Priorities shift, and some things no longer seem important as they once were. You need to place faith in the competency of the medical team and in the healing process. Also, realize the patient has insights about their body. You hope your commitment to having a positive attitude will be inspiring and disease loses its grip on the life you cherish. Attempts to minimize exposures and reduce risks for the care receiver can become many of the caregiver’s highest priorities.

Accept That You Won’t Know Everything–Nobody wants to be unprepared, disoriented, or clueless in a serious dilemma. Our problem is we are preconditioned to be a worldly people. A caregiver acknowledges he or she will not always know what to do and that sometimes there are no right answers.

Encourage Hopefulness–One of the first things I learned about cancer was no two cancers are identical; throw out the stereotypes. Just as no two people are the same, no two courses of treatment have exactly the same results.

Improve Communication–The caregiver must find words to describe feelings and improve communication. Have the courage to say, “This happened and it makes me feel…” Until we recognize, acknowledge, and accept our circumstances, we do not move on or improve the situation.

Try to categorize dialogue with interaction models and renew your exchange of information. For example, there are five W’s that make up the body of each conversation: Who? What? Why? When? Where? 1) Who loves you, baby? (Gratitude) 2) And now…the rest of the story. (Fresh consideration) 3) I don’t understand; I don’t comprehend. (It’s a mystery) 4) I go crazy whenever… (Protest with request to change.) And 5) I want to be here. (Aspiration)

Recognize the ability to communicate effectively is often limited by external things, such as words, language, situations, feelings, opportunities, and choices. Don’t give up—the reward is worth the effort.

At times you may feel like an escapee. You may be ashamed. You may feel unworthy. You may not be selfish but you definitely won’t feel selfless. You would never wish to repeat this ordeal. As a caregiver you are called on to love someone more than life itself. Caregivers find ways to say, “Life will get better.”

(V2) How to Become a Better Caregiver

(from CMfM – Volume 2: Interaction with (How to Love) a Prisoner By Dan Zeorlin)

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Are these episodes (A through F) related and if so, how?

A friend wanted a pen-pal for a man on death row. It seemed that I would somehow become tainted by the association with this stranger. But what did I have to lose in comparison to what he had already lost? So I volunteered and began a regimen of regularly writing and sending letters.

Let me say this: I never knew (and still do not know) the details of his conviction. However I understood that it was unjust and this created the need to combat loneliness, depression, and the despairing nature of his situation.

All correspondence was monitored – okay by me since I had nothing to hide. I figured all letters became public record anyway. Early on I received a reply to this inquiry: “What kinds of things should I write or avoid writing about?” His response: “We ain’t choir boys here.” (Side Note: I sing tenor in the church choir.) At that point I concluded that I would be writing to the entire prison community – on both sides of the law – from guards to legislators to inmates and anyone trapped by secular cronyism. So I told jokes and wrote about ordinary, daily life. I shared my joys, hopes, and desires as well as my disappointments and sorrows, plus the trials and tribulations of being a middle-aged husband and parent.

Over a year later my last letter got returned, bearing the message, “Return to Sender”. I was devastated and with some trepidation asked my friend what had happened. He got  exonerated and was released. Success! (B)

When my wife developed cancer I was well aware that “Death sentences are not absolute” (read CMfM V1). I wouldn’t allow the negativity, doubts, and fears to overturn my conviction: We can survive! My wife recovered and is near-fully recuperated. Most assuredly, life changes. Eureka! (C)

(Dad)

Dad – who had already endured multiple heart attacks, a bypass operation, and heart stint procedures – experienced a tragic event and could not be resuscitated prior to sustaining the serious effects of oxygen deprivation to the brain.

At the hospital the neurosurgeon announced to those tending family members that Dad survived but his life would not be the same – not bad, just different. And his lifespan was probably going to be significantly shorter. They had induced a coma so that the injuries to his swollen brain might be reduced. Fortunately, Dad was in a robust nutritional state (overweight) because he was not going to be eating while in the coma! In fact he was unable to feed or care for himself for quite some time, and only partially at that. Weeks later at discharge, Mom – the retired registered nurse – exceeded all expectations by taking him home and nursing him 24/7 from his persistent vegetative state to a semi-alert, responsive companion. Her goal was to celebrate their 50th Anniversary (it joyfully arrived 6 years’ later).

All good gifts bring collateral damage. I negotiated a list of “To Do’s” during most of the visits to see my folks. On one such outing I got tremendously dirty and needed a shower to clean up. My pants were salvageable to re-wear but my shirt was filthy and got ruined. As I exited from the bathroom Mom appeared extending a wrapped package. She added, “You can fit into one of your Dad’s shirts, can’t you?” I replied, “Mom, I can’t take this – it looks like a birthday present.” “That’s okay. With your Dad’s brain damage, he doesn’t remember that he’s already received it. I just re-wrap them. He enjoys getting the gifts and opening boxes each month. It’s about time for me to buy a new one.”

None of this was easy. As caregivers, we just hope that our presence will be “presents” enough. I became a better caregiver by observing care as it was being given to Dad. I witnessed love and made peace. I learned to forgive. Lucky me! (D)

During one of my several job changes I chose to make the 144 mile daily round trip to work and back home from our small town. I did this for many months before we were able to sell our house and relocate to a large metropolitan area in a new school district, city, and state. For the record: Now is not the optimal time for anyone to begin their high school senior year. After a tortuous year, our daughter moved away to attend the state university.

Creating a new home in the changed environment added stressors to our lives. I had trouble coping with the realities of “Information Overload”. My wife developed cancer. That shock nearly ended it for me. I tried to manage problems on the home front but troubles were brewing elsewhere. During the ongoing cancer treatments we announced to our daughters that everything was going to be fine. But between one visit and the next my wife lost all of her hair, dropped 25 pounds of weight from her slender frame, plus exhibited signs of fatigue and exhaustion. I distinctly remember when our collegian announcing the following month, “Thanks a lot Mom for giving us your (cancer-prone) genes.” Like those in similar situations she became delusional – or at least she appeared that way for a while.

I didn’t know it then but we had many unsettled, unresolved, issues and wounds which would take years to cure. While serving prison time on a 10 year 3 month sentence in a state Correctional Facility she developed a first-hand understanding of how potential was waylaid. Other influences shaped her psyche. One grandma died in June. Incarceration began a year later. Then her three remaining grandparents died within 8 months of each other. Most inmates are restricted to a very limited number of visitors. But she met with us on a monthly basis throughout the ordeal and even tolerated my “Dad jokes”. We were further blessed by a clergywoman who gave spiritual directions which helped reach acceptance and closure. Our daughter is an amazing person. She has an awesome maturity and shows respect for the oppressed. Voila! (E)

(Fut)

(CMfM) Volume 3 and on: (We need contributors)

  • How to Love an Addict;
  • How to Love in the face of Dementia;
  • How to Love an Alien (the Stranger):
  • How to Love Yourself as your Neighbor (Forgiveness);
  • How to Love Again (after loss of your Spouse, Significant Other, Child, Sibling);
  • more

 

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