Parkinson's: Ambiguous Loss

Snarky Parky & me 

My Adventures with Parkinson's

Narrated and lived by Nancy Mellon

Blog Coordinated by-Corrine Bayraktaroglu

Ambiguous Loss

Ambiguous Loss- I had never heard of this term before. Have you? I got it from the APDA virtual Parkinson's Conference that Steven and I watched last week.

It was a very good talk called Ambiguous Loss “Ambiguous Loss & Parkinson's disease: Living With Uncertainty” The Speaker was Lori Nisson. (There is a link for this talk on the bottom of this post. I think it is well worth listening to.)

This talk is focused on Parkinson's ambiguous loss but it is a good explanation for all sorts of other ambiguous losses.

Steven got me a book called “Ambiguous Loss, Learning To Live With Unresolved Grief” by Pauline Boss. This book refers to the uncertainty over a loss and the unresolved grief faced when we lose a loved one through divorce, adoption, addiction, chronic mental illness, immigration, Alzheimer's, or a war scenario-MIA. I could see where it referred to many people that I know and love.

• An Ambiguous Loss has no resolution or end.

• It is a progressive loss. It is important to grieve those losses as you go.

• It changes your relationships. (I worry about that a lot.)

• It affects your ability to make future plans.

• Roles can change- (boy that is already starting in my life. It is disconcerting, for me and my family. Their roles are changing too.)

• You need to accept a new reality

These are all things that I have felt. My new psychologist talked about the need to grieve, the first time that we met together.

I didn't know I was grieving. The grieving that I had experienced before was when someone I loved died. That is a different kind of loss than Ambiguous Loss.

So what are some of the ways you and your loved ones can begin to cope with Ambiguous Loss? Nissan said:

• Accept less than perfect solutions

• Find the middle ground-(I am not sure what she meant by this- what do you think?)

• Avoid trying to fix everything-(this one is especially for you Steven)

“Ambiguity isn't comfortable. We can't change the course of the disease.” (I think she is wrong, we can in some ways, through .. dare I say it? Yep, exercise! Today we exercised through Laughter Yoga, now that was fun!)

“We can change our perceptions by accepting less than perfect solutions and planning to live well.” Planning to live well is an interesting thought. “When you don't know what will happen, you have to make a conscious choice to appreciate what is. ”That's not exactly planning, to live well. I think, I have slowly been coming around to that “planning to live well “ idea. I think, I may now feel it is possible to live well with Parkinson's. Not all the time, for sure, but in precious moments during each day, yes I am definitely living well.

She talked about needing to balance our grief over what we have lost with what we have gained. You can hold 2 opposing ideas in your mind. We did a little fill in the blank to help us think about that.

I have lost _____. I have gained_____.

Steven said, “I have lost my freedom. I have gained intimacy.”

When I asked what did he mean? He said that he had gained intimacy during the nightly massage he gives me (nope, folks, we are not talkin' “ooo lala,” he gives me a massage to help my muscles relax for a while.) It is a time when we talk and laugh together. We just concentrate on each other. I have not asked yet what he meant by he has lost his freedom. I don't want him to lose his freedom. But I think that is one of the things I can't control.

I said: “I have lost my future. I have gained a richer now.”

When I first got my diagnosis of Parkinson's, I did feel that I had lost my future. When I am feeling OK or 'on' (that is the times during each day when my medicine kicks in, which depends on many things,) I don't feel that I have lost my future anymore. I believe I can live well in the present moment, it is good enough. And I am capable of imagining new hopes and dreams. They tend to be small, (like- Yes! We can go by car, and spend a weekend visiting Eileen and Chicago!) They make me happy.

My new human connections, through my assorted Parkinson's groups, are a great joy to me. They are good, because they understand the Snark.

Guidelines for Coping:

Finding meaning in our life, as it is now.

How we can help others or do work to keep others in the future from getting PD

Contemplating how we can still do things.

Being grateful for all we have,

Focusing more on our successes, (it is easier to look on the loses than to see the the good times)

Using a journal to write about what we are feeling,

Setting an action plan for ourselves- small goals that are achievable,

Balancing activity with periods of rest,

Exercising to build more energy for the future,

Avoid trying to be perfect,

It's OK to have a bad day,

Give yourself grace,

Take care of yourself by balancing reflection with doing fun things!

Cheers,

Nancy & the snark (Susan told me she always uses lower case for parkinson's so she doesn't give it power.)

Footnotes from Corrine: First time I heard the term Ambiguous Loss was when I was facing being estranged by someone I loved dearly many years ago.Reading about it was very helpful in realizing I was grieving and learning to live with it.