Friday, January 3, 2014

Why Hope?

As many of you know, I am a caregiver. I am taking care of a dying husband in the end-stages of Parkinson's disease. We face his decline every single day of our lives. There are days when the only thing I focus on is his next breath. It is only human nature to hope that he will get better or that death can be delayed. The reality is that he will not get better. And that death will be inevitable.

Give a voice to your secret longings, wishes, and dreams:

If I had a magic wand what would I wish for? Would I wish that we could go backwards and live parts of our lives over again? Would I wish away the Parkinson's disease? Or would I wish for something as simple as a way to ease his constant coughing? See, I think that is what hope is all about.

Define the reality:

I know that my husband not only has end-stage Parkinson's disease but a variety of other health issues, as well. He has heart disease, thyroid disease, problems with carotid arteries, blood pressure and blood sugar disorders. And, on top of all of that, he is almost 81 years old. So when talking about hope it is important for me to know where to place my hope. I know, from my years of nursing, that no one lives forever. No matter whether they have diseases or no diseases. Your body is just not designed to last forever. So that is my reality.

Acknowledge that your loved one may have different hopes than yours:

We have this issue going on right now. And it can really make things hard. Richard has a different view of hope than me.
We have talked. He wants to get better. He believes that he will get better. He thinks he just needs more exercise. Part of this is the dementia. And part of it is because he is stubborn and proud. I know that he isn't going to get better. Does that mean I should take away his hope? No, I don't think I have that right. I think he should be allowed to have his hope. And I have mine. Tonight, I hope for uninterrupted sleep. Anything wrong with that?

Honor Your Loved Ones Hope

For this one I am just going to directly quote the passage that I read on the caregiver's site where I am getting my tips:

   "Remember that your loved one is the patient".

So I will honor his hopes.

Mourn the Loss of the old dream:

Believe me when I tell you that I am still dealing with this everyday. I dreamed of growing old with Richard. Which is pretty silly considering he is 18 years older than me. But I still dreamed of it. I hate that he will leave me alone and that I will probably live another 20 or 30 years without him. I mourn this loss and hope for healing.

Create a new dream:

This one is really, really hard. Why? Because we are on different levels with the dream. He dreams of getting better (which means younger and not sick) and I dream of peace. For both of us. Maybe that is our new dream. Who knows!

Caregivers, Focus on Your Loved One:

"Always remember that being a caregiver is first and foremost about supporting the person you love" Always! I will hold his hand and we will each have HOPE. And in the end, we'll both be okay.

The 7 Tips in this post came from Senior Living*


  1. I hope you got that full nights sleep. Hang in there Paula

    1. Didn't get it last night....started new meds though. My son is here tonight, so if I use my time wisely I will get a full-nights sleep tonight. Hope you are loving California!!

  2. Beautiful post. Hope takes many shapes and forms. Mine is for you to find peace in yours.

    1. I hope for that as well. Both for myself and for you! thank you

  3. I'm sensing both grit and vulnerability here ... seriously, you're an amazing lady, Paula.

    1. You describe me to a Tee....grit and vulnerability! Thank you Myra!

  4. My favorite part of all that you said (which was all beautiful) is: "Does that mean I should take away his hope? No, I don't think I have that right. I think he should be allowed to have his hope." That should be the case in all marriages. Love it, and you!!

    1. As usual Cristy, you get me! It is hard as hell, this hoping thing!


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