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.

Some Days

Some days are okay
some days are not

Some days

I just get so tired
of this little monster
following me around
telling me I’m a burden
telling me I’m losing it
telling me I’m not going to get any better

Telling me
shouting to me
that some days
are not okay
that those some days
will someday
come to an end

And I know that
and tears
begin to fall

But some days
are okay

I tell myself
I’m not a burden
that some day
it will end
but not today

Today I will live
to the fullest I can
today I will listen
to the Voice
that beckons me
to not be afraid of this valley
and it’s casting shadows
and to trust
in the One who holds me –
the One who silences
this little monster
and tells me
that some day
it will be over
and that is the day
I will be home