And so...
Dear Caregiver,
There is something your spouse/patient would like to tell you, but perhaps he or she can't find the words.
But I can, and if needed, I'll speak in his or her behalf.
With a terminal diagnosis, one becomes frozen in time. One is pulled from the River of Life that extends from youth to old age, and is deposited on the shore.
The past becomes irrelevant to the current fight to stay alive, and the future becomes irrelevant because...well, the patient isn't going to see it.
Your spouse will not grow old with you. That, dear Caregiver, is a fact.
And the 'remember when' of scrapbooks becomes painful. Memory raws its meaning from the prospect of a future. And with that prospect lost, Remember When is simply a painful reminder of a future in which this present of terminal illness is simply a place the patient won't see.
The scrapbooks of the future, those that memorialize today, and forever closed.
But your life, dear Caregiver, will go on. YOU will go on.
It's a hard dichotomy to have to live, especially since part of your duty to your dying husband or wife is to ease the twin burdens of fear and regret.
There's no one right way to do this, but here are some suggestions:
- Don't talk about your plans in a future your mate won't see. It hurts.
- Don't talk about adapting to growing older. Your husband or wife would ive a lot to be 'growing older', and that, too, hurts.
- Don't talk about what's on your bucket list. For the dying, the bucket list is fantasy...one the diagnosis has been given, all efforts go to mitigating pain and prolonging life. There's very little room for that balloon ride over the Serengeti to watch the migration of the animals of the plains.
- Be there in your spouse's Now, een if that means watching a DVD you've seen a doen times. That may be all he or she has...and you are almost certainly all he or she has.
The musical theme comes from Imagine Dragons...
Still hoping to get the new and improved version of Blessed Are The Pure Of Heart up and running in the near future. Just haven't had the energy to do it yet...but if you would like to read it, please say so in your comment and I'd be glad to send you a PDF (which should fit your Kindle).
I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. I hope you'll join me.
Marley update... been moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.
WE MADE A DIFFERENCE!
And marley has a Facebook page! Please drop by to see how happy he is today.
If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.
Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.
Andrew, I so appreciate this perspective. I am not directly in a caregiving role, but I know a couple people who have terminal diagnoses. Your perspective give me insight in how I can "be there" for them.
ReplyDeleteYour visual about being pulled from the River of Life gives me a better understanding. Thank you for that. I so appreciate your vulnerability in the words you write. Thank you, friend.
I continue to pray for you, Barb, and the dogs!
Jeanne, thank you so much for these affirming words...this was a hard subject to write, and what you see above is the end result of a LOT of rewrites!
DeleteIt's a feeling that's really weird, much of the times, and the strangeness gets hammered home in the oddest ways, with just a casual reference to the aging I will never see.
We all truly appreciate your prayers. Ladron, service-dog-in-Chief, has been awake for three days, as I have been. If you could pray that she might hand over her duties for a couple of hours (say, to Chris or Strawberry), so she can take a nap, both she and I would be grateful.
This is probably the best thing you could tell caregivers, Andrew!
ReplyDeleteJerry and I have never really "dreamed" of doing anything, mostly because anything outside our realm of nearly 25 years of day-to-day health issues has always been unattainable for us. I've always just tried to live in the here and now for Jerry because, as God tells us, our spouse comes first (after Him, of course). I do not have regrets or anger that our "future" has been robbed by human body frailties... all that would do is eat up precious time that can be better spent making sure that whatever time we spend together MEANS SOMETHING, for BOTH of us. I truly believe that I'm doing what God wants me to do, to care for my husband and love him through whatever must be faced.
Thank you for always giving such wise words to us all! Blessings and prayers to you guys as always!
Diana, thank you so much for this...I am so very grateful for your sharing this.
DeleteIt's so hard to see the future for which you'd hoped, together, drift out of reach. It happened to us, both through this illness and through PTSD. "I can't take you ANYWHERE!" became Barb's mantra for the latter, because my response to some stimuli was quite dangerous for all concerned.
And you're so right...the important thing is to make sure that the time you spend together means something for both of you. That is SO vital!
Again, I am so very, very grateful for your choosing to share your experiences here.
Marie, thank you so very, very much. These are getting harder to write; I have to face a darkness that is getting scary.
ReplyDeleteI'm just so glad you're here. I need the company.