For The Caregivers

Sitting in the neurologist’s office, my questions usually get answered, my fears are often calmed, my symptoms often get addressed. However, I wonder how my husband feels sitting there, listening in, adding his two cents worth. How does he feel about what he sees happening to me daily, what he might be missing, how is he coping or going to cope?
Who questions the caregiver? Where do they go to for support? Is there someone who can put their fears to rest? What should they (the caregiver) expect?

Because I’ve never seen an article address the subject much (although, I’m sure they’re out there), I thought I’d try. Since I am not the caregiver in my situation, I have researched some material to find some answers.

So, caregivers – what could you be in for?

You are in for some changes. Your loved one is going to be changing physically and mentally day by day. Because each case differs in how PD affects the patient, it is hard to say how much change will occur or how long it might take. This could very well cause fear and understandably so.

You fear your spouse will no longer be that beauty you once fell in love with. You no longer have those deep conversations you used to have. Their concentration level just isn’t there and it’s frustrating you can no longer have those deep talks. The cognitive issues that so often accompany Parkinson’s disease can be harder to handle than the physical changes. And so often it may seem that the disease now outshines the person you once knew.

It’s okay to grieve, because what you are experiencing is worth grieving over. Someone doesn’t have to have died to be dealing with grief. I grieved for years over my oldest son taking his family away in hopes of a better job and providing more for them. No one died, but the grief was (is) real. Your loved one may not be anywhere close to passing, but still you grieve over the one you are slowly losing to a malicious disease.

When the disease is diagnosed, it can be confusing. There can be a lot of misinformation floating around in cyberspace that it is best to get your information from a qualified source* and to remember that each person will wear PD differently. You may very well face family members and friends who don’t want to believe what is happening and they will offer no help or support whatsoever. You may feel left alone to fight this battle. You may fear being alone to finish your life, a life that now looks so differently than the one you and your loved one had dreamed of.

You may realize that the support just isn’t there – as you expected/anticipated. Family and friends may stop calling or stopping by. They may not invite you to get-togethers so as they once did. They may ignore you. They just don’t understand.

Pretty dismal, it can be. But remember, everybody’s situation is different. Everybody will respond to this disease differently, both as patient and caregiver. What I wish to convey in this article is this…

We couldn’t make it without you. I know it is and it’s going to be hard. And hard is hardly the word to describe a caregiver’s situation as they care for someone with PD. But, you choose (chose) to stay through the long haul even though you could have left and gone your own way. (I personally know of people that have had their spouse leave when diagnosed with PD.) But you haven’t. You have chosen to hold tight to the promise you made at the altar or as a loyal friend. And we love you for it. And because we love you, please get some support for yourself.  Don’t go this journey alone. Move closer to  family if they can’t come to you. You do (and will) need each other.

We may get to a point where we can’t say it or show it, but we are so grateful and blessed to have you in our life and we love you for all that you are.

Our caregivers.

The Thing About Nurses

imageYou’ve most likely heard about it.

She comes out from behind the curtain. Will she tap dance? Sing opera? Play music on the rims of water-filled crystal glasses?

No, one of this years Miss America comes from behind the curtain dressed in scrubs and donning a stethoscope around her neck. She’s a nurse and she gives a little bit of insight as to what that entails.

Nursing is not your usual talent that is seen or heard at Miss America pageants, but it is a talent. And a gift. Not just anyone has the talent, gift, or guts to pull off that job. But, members of The View, an afternoon gossip show made up of women, felt inclined to mock Miss Colorado for her presentation of being a nurse.

It’s all over the news. Apologies and excuses are being made. Back-pedaling is in full speed, but the damage has been done. Members of The View have shown their realistic level of intelligence while nurses of the world united and demanded an apology. And rightfully so.

Reading up on Kelley Johnson (Miss Colorado), I found she graduated this past spring with a Bachelor of Science degree in nursing from Grand View University and was also valedictorian of her nursing class. Not a simple feat.

View members mocked Johnson for her presentation, asking themselves why Johnson would be wearing a doctor’s stethoscope. I’ll just start with that…

I have had three brain surgeries in the past three years. Between doctor visits in preparation for those surgeries, pre-ops, surgical nurses, before surgery and  after surgery  nurses – I have seen and been cared for by several nurses, male and mostly, female.

They have held my hand, wiped my brow and covered me with warm blankets. They have inserted needles, changed IV bags, removed stitches. They have cleaned wounds, emptied urnals, freshened soiled linens. They have provided prompt medication, explained procedures, answered urgent calls.

They always wore a stethoscope. And a uniform. And shoes.

They all had a four year degree or they wouldn’t have been able to do what they do. Not all were valedictorians. That is a gift. A talent. An exception. A feat to be admired and honored – certainly not laughed at.

They are there at the doctors beck and call, carrying out his orders. They put the motion to the process, providing the care to get the patient back to optimal health. They are there from beginning to end – the first to greet the patient, the last to see them out the door.

They are the ones to go through the discharge cautions and warnings, tips and transitions, explaining the what’s, why’s, and therefore’s. They are cautious yet capable. They are merciful yet tough.

Talent is defined as a special natural ability or aptitude, a power of mind or body given to a person for use or improvement. It is often defined as a gift.

You have to have a gift for changing bloody, infected bandages, day in and day out. For bathing strangers and assisting someone with a bed urnal. You just don’t sign up for those tasks  unless you feel called to serve in that capacity.

A nurse, specifically a RN (registered nurse), must have a four year  degree from an accredted college. A firefighter or an emergency medical technician don’t even need a two year degree and yet we trust them unquestionably with our lives. They get thanked, praised, and commended – deservely so. But how often do you see banners posted, thanking nurses for their services after a disaster or tragedy and hospitals are inundated with an onslaught of patients? Just sayin’.

Thank you, The View, for expressing your thoughts and opinions so that we were able to bring attention to where attention is long overdue and give heartfelt thanks to the nurses who pull long, hard hours to assist in keeping us, and those we love, alive.

Get It Out

imageLast summer, the findings of a study conducted by the University of Houston were released regarding the well being of female breast cancer survivors, specifically Chinese women. This ethnic group was chosen primarily because of the stigma cancer holds within the Chinese community.

“Unlike the Caucasian population, many Chinese have less knowledge of breast cancer and they feel that the cancer is very threatening, and they associate it with immediate death,” said Qian Lu, assistant professor and director of the Culture and Health Research Center at the University of Houston.

The study, which was published in Health Psychology, a scholarly journal, was based upon writing. Each of the 19 participants in the study (based in the Los Angeles area) were given health assessment questionnaires before the study began, followed by three sets of instructions.
In week one, patients wrote about their deepest thoughts/fears/emotions in regards to their experience with breast cancer.

Week two, they wrote about coping mechanisms they used to relieve stress brought on by the disease, and in week three they were to write about their positive thoughts and feelings. The patients who put in 20 to 30 minutes each day regularly (3-4 days per week) for the three week period saw positive change in relationship to their immune system.

The report stated that the purpose of the writing exercise was “to facilitate emotional disclosure, effective coping and finding benefit, which would work together to bring stressors and personal goals into awareness and regulate thoughts and emotions relevant to the cancer experience.” It also went on to say that the “release offered by writing had a direct impact on the body’s capacity to withstand stress and fight off infection and disease.”

So – what’s this have to do with Parkinson’s disease?

I don’t think Chinese women have an edge when it comes to writing about their illness, disease, sickness, heartache, joy and/or thanks-givings. No – I believe that writing is good for anyone’s mind,  soul,  heart, and  spirit. You can scratch down (or type out) your thoughts and feelings and say whatever you choose in regards to how you’re feeling. It’s a release of pent up frustrations, anger, fear, confused thoughts, sorrow, grief – the list could go on and on. It’s a release when no one else will listen or when no one may understand. It’s called journaling. It’s therapy in its least expensive form (besides the one on one sharing of conversation between two good friends).

Journaling (or as the study referred to – writing) will not cure cancer. It will not cure Parkinson’s. But it will allow for a place to dump the stress and walk away, perhaps leading to a feeling of life being a bit lighter. When you’re body isn’t focused on fear, grief, sorrow and the like, it has a greater capacity to “withstand stress and fight off infection and disease,” as Lu stated above. Journaling offers the opportunity to get out your fears without feeling foolish. To release the grief over feeling you’ve lost something valuable. To be thankful for what you do have.

And that last sentence is important…

If you spend your time journaling everything negative about your life with PD, your life with PD will be anything but positive. There are still good and beautiful things to behold in the midst of this journey. So, if you are thinking about journaling your life with Parkinson’s disease, either as a patient or a care giver – release the fears, the unshed tears, the grief and the sorrow onto paper but make sure you include and end with the positive. Always end with something positive.

It’s there. I promise.