Why share your story with loved ones?

storycrafter

I read a wonderful three page letter another caregiver (on a different site) wrote summarizing and describing his journey with his wife and behavioral variant FTD. His situation had many similarities to mine and he captured nuances of the changes in the spousal relationship when one of you has dementia. So much of his note resonated deeply. I found it so helpful and supportive to read his story, as I find all the people's stories who share here. Why is it so moving to hear/read his story? It felt healing to have someone "say it out loud" for me.

I suddenly had a strong desire to share his letter with my loved ones and my FTD spouse's family, too. I also thought to myself, maybe I can even write my own story, include our details. What would I say? ... Will it just seem to them like I'm whining? That's not my intention at all. I think I want to be closer to them, more transparent and honest, or something.

My question tonight is... why is the desire to share the story with my sons and siblings, and even with my husband's father and sibs, so strong? What is this wish to share our/my story with them? Where does it come from? Is it selfish and short sighted indulgence? Or is it a need for understanding? A desire to share our experience, to educate, raise awareness? I'm wondering what my motivation comes from. I'm having trouble understanding my own feelings about why I want the family to read that story. What insights can you share?

Is it fair to them to share such profound and deep feelings, to be so transparent and dare to bare my heart with them? Would it be too much for my grown sons? I know my sisters would care and offer compassion. I don't really know how my husband's family would respond if at all. They have always been rather closed and distant, live far away, and share very little with us, though I try to reach out to them once in a great while.

I guess I'm thinking something like ... they need to know, so they can adjust or adapt their relationship with dh before he's gone, while he can still communicate a bit? Is that a good reason to share with them?

I don't talk much about it to my sons who are busy with their own young families. My husband is very highly functioning and is basically fine on his own here at home. I've got it relatively easy. DH has a slow long version of the disease. I just orchestrate a calm environment and handle all the decisions, etc. We have a long way to go. But our lives are profoundly changed and I carry a lot of stress. I want them to know some of the impact on our lives. Is wanting this a need I should pay attention to and act on?

I'm very aware their various relationships with him - sons, father, siblings - are very different from mine as a spouse. I would like them to know a little inkling of the impact his disease is having on us. How much do you share with your various family members? And why do you share what you do?

Thanks for wading through my rambling musings. This journey feels so lonely. And is sometimes so baffling.

RobertsBrown

I  have similar feelings.  My best guess is that I want family and friends to know Diana better, and to see her the way I see her, and to let them know the facts.  There is a hope that they could heal and improve their relationship with their sister, daughter, mother.

What stops me from executing on this is the realization that we have the relationships we make.  The fractured relationships that her family members of all generations have with her are not symptoms of incomplete information.  It's willful, sometimes selfish, and generally ignorant.  In my life experience, every time I try to fix a relationship uninvited, it blows back on me pretty soundly.

So, I leave sleeping dogs lay.  I daydream about mending other people's fences, but I don't act on it.

PlentyQuiet

I think you hit on it with your last couple of lines. This journey is lonely, and baffling. 

To hear someone else's story, and it mirrors yours, makes you feel seen and heard. Make you feel like you are not alone in this wilderness. The number of times I read posts and think "yes, here too!" is so much more than I thought initially. 

I think the desire to tell and share your story comes from the connection you feel when you read someone else's. It's that desire to help out others, either caregivers, family, or members of this board. We all tell our story to help others in the same boat.

Busy adult children may not be in the trenches with you, but they are grieving an impending loss. They may feel like they are whining or selfish to express grief if they are not involved daily, they may be conflicted if the relationship was difficult. 

Sometimes sharing a story can open up a dialogue that can help someone, even if they don't realize they need it. We have all noticed that on these boards, and I think it's the same in real life. They may adjust or adapt relationships, or not. You can't do anything to achieve an outcome except give them information and be there to listen to their story as well. 

Ed1937

"Or is it a need for understanding? A desire to share our experience, to educate, raise awareness? "  I think both of those are excellent reasons to share.Sometimes when there are strained relationships, and people get the real picture, those relationships can be healed. If that happens, it is always a good thing.  

If you share your experiences, it should be like working with a PWD. Keep expectations low because you never know how someone will react to it. Someone might say you're whining like a little kid, while another might say they never realized just how hard it is, and they wonder how they can somehow be of help. Yet another might say they just got an education on what this disease does. 

I say share your story, but DO NOT worry about what others might say about it. Some may be delighted that you shared your story; others not so much. You can't control how others think about things. If you share, I think it will make you feel better. Just my opinion.

MaryG123

I wonder about this too, and feel like I’m being selfish to share, as I admit to wanting some sympathy.  I’ve started by telling my sisters, who don’t live near by and only see us once or twice a year.  After giving them some examples of DH’s difficulties, they were very supportive and I got the sympathy I needed.  What they said wasn’t necessarily helpful, but their love and concern came through.  It’s a start.

CStrope

MaryG123, I agree.  At some level it's about validation.  It's showing all those other people the little nuances we deal with on a daily/hourly basis.  It's about standing up and saying "this sucks, and you have no idea"

Too many times we have to deal with people telling us how wonderful our LO is, or how good they're doing, when we are dealing with all the emotional stress of caregiving.

jfkoc

I would certainly start a journal. You may or may not wish to share it.

storycrafter

Thank you all. I so appreciate your perspective and wisdom.

Cherjer

I am in a writing group called "Sharing Your Life Story"...sometimes I write and other times I just listen to what writers have to say. I find my writing is validated by my classmates, but do not want to get sympathy! My life is not about AD!! But it is!! I am saving all my writings for my son and grand-daughter to read  when they are ready.

mrahope

I would second the suggestion about keeping a journal.  I sometimes pour out my heart on the page and feel better for it, whether anyone reads it or not.  It also serves as a reminder of little incidents that might have been forgotten in the press of daily life.  These can show changes that might be important as we look back.

I have only shared verbally with my sisters and my children and one of my DH's nieces with whom he is especially close.  Anyone else can be on a "need to know" basis, IMHO.