Caregivers: We wouldn’t make it without you…

Sitting in the neurologist’s office, my questions usually get answered, my fears often get calmed, my symptoms often are addressed. However, I sometimes 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 he is coping, or going to cope?

Who asks questions of 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 be ahead on this journey with Parkinson’s for you?

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

You fear your spouse will no longer be that beauty or that hunk you once fell in love with and were attracted to. 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 talks like you used to under the stars. 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 OK 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 moving his family away in hopes of finding a better job so he could provide 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. A lot of misinformation can be floating around in cyberspace. It is best to get your information from a qualified source and to remember that each person wears 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 different from the one you and your loved one had dreamed of.

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

They just don’t understand. They can’t understand unless they walk the same path, or a very similar one.

It can be a pretty dismal place. 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 column is this: We couldn’t make it without you. I am sure it’s only going to get harder. And hard is hardly the word to describe a caregiver’s situation as they care for someone with Parkinson’s disease. But you chose, and still choose, to stay through the long haul even though you could have left and gone your own way.

I know of people whose spouse left when they were diagnosed with Parkinson’s disease. 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.

And we, the needy patient, 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.

Sometimes Parkinson’s Gets Me

Poppy Pods by

today i don’t feel like me
today i don’t know what i feel like
but it isn’t me

i’m tired
i’m weary
i’m running the race
and i hope – running it well

but i’m tired
and i’m weary
and this thing –
this thing they call parkinson’s
it’s a thief

i can say i have parkinson’s and it doesn’t have me
but the truth?
truth is that sometimes…
just sometimes…
it really does have me

it gets my zip
my perk
my drive
and gives me ‘tired’
and that thing we call

i suppose it’s time to muster up energy
somewhere, somehow
and take back
the me that’s missing

the me with zip
the me with perk
the me with drive
and push through another day
of me having parkinson’s
and not letting it get
the best of me

Little Monsters Plan Thwarted with PD

Hollyhock Beauty

I don’t feel very good. My stomach feels nauseous, because my head hurts. My head hurts because I can’t stop grinding my teeth, which only adds to the stiffness in my neck, which makes my back hurt more, which makes me want to yell, “ENOUGH ALREADY!”

But – I am not going to yell for who would I yell to anyhow?

It’s all part of Little Monster’s game: Pick an innocent bystander. Get inside their head. Turn the knob on the basal ganglia a quarter of a turn. It won’t take much – it’s a small, tiny, minuscule, little thing.

And yet, in that oh-so-small, minuscule, tiny, little thing lies the key to Little Monster’s plan. The plan to take over your life. To put a stop to the production of dopamine cells.

No one knows how Little Monster enters. No one knows which knob he turns in his quest to rule your body. But it works.

Production stops – or at least slows – and you begin to feel different. Strange. Off-balance. You stumble. You shake. Your movements no longer belong to you.

You begin to take a pill for this. And then you take a pill for that. And before you know it, you have a handful. You wonder why you’re sad and then all of a sudden you’re not. And when you’re not, you wonder why you ever were. And it goes around and around and around.

Your toes curl in, your legs cramp up, and your hands and arms take part in the plan. You are left feeling pain and disfigurement and despair and loss. And you grieve for what was, for what could have been, for what is now.

But, then you have a good day. A day with sunshine, although, perhaps hidden behind the clouds. You see the rays break through and you turn your face toward them, just to soak in the healing warmth. And they do warm you. They warm the muscles from your head to your toes and you feel like you just might make it through another day, because Little Monster has gone to sleep. He cannot overcome the one who decides to overcome him. And — we can all overcome if we put one shaky foot in front of the other take another step, and smile. Because that’s one thing Little Monster didn’t count on… to see a beautiful smile on a face he turned to stone.