This is the story of an unintentional caregiving disaster. It;s been disguised beyond recognition, while keeping the principle to be illustrated intact.
There was a couple, Bob and Mary. They were in their late forties, no kids, and enjoyed the advantages of dual (but linked) careers. And then Mary developed cancer.
She was in good physical shape, and had a good care team. Bob was incredibly supportive, arranging his life around her needs with nary a complaint and consistent good cheer.
But the cancer was vicious, and soon Mary had to leave the job she loved. Her strength was failing, she was in constant pain, and the experts were pessimistic.
In the early spring of what was expected to be her last year, mary surprised Bob by saying that she wanted to make a traditional Zen garden, with rock arrangements and a flowing stream (powered by a recirculating pump).
Bob said, "Great! I'll talk to some of the guys from work and we'll get it built for you!"
No, said mary. I want to do this myself. I know it'll be hard, I know it'll take longer. But I want to do this. If you can get the materials I need, and occasionally lend some muscle, that would be great.
Bob was puzzled, but agreed, and watched over the weeks as an old stretch of lawn was gradually replaced with the outlines of a Japanese garden.
And then one day he came out while Mary was working and said, "This is a great idea you had, dear. You really needed something to keep you busy."
See the fail?
Bob didn't get it. The garden was Mary's hook to the future, not work for anxious and often idle hands. It wasn't a time-filler. It was a mission.
The garden was finished by fall, but for a few weeks Mary lost the joy. She felt herself categorized as a patient, as someone to be managed.
She wanted to have something of worth to give, and the garden was her gift, her legacy. It wasn't completely ruined for her, but the joy was stolen for a time period that could never be made up.
Thus, the lesson - your terminally ill spouse is still a human beings, with hopes and plans that may seem irrational to you, but mean a lot to him or her.
It's easy to fall into the trap that your spouse's whole life revolves around illness; it may seem that way to you, given the intensity of care that may be needed, but remember this -
Illness is only a part of life, and the rest becomes far more precious when it might be lost.
Marley update...he's received a lot of support, but STILL NEEDS HELP TO BE SAVED.
WE ARE MAKING A DIFFERENCE!
He's up to nearly 200,000 signatures, but the local authorities are dragging their feet. They think that we'll give up and go away. We won't.
He's up to nearly 200,000 signatures, but the local authorities are dragging their feet. They think that we'll give up and go away. We won't.
If you have a mment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.
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.
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.
Beautiful story, Andrew. And a beautiful lesson for us all to value other's work as purposeful, not as a time-filler. Thanks for sharing.
ReplyDeleteLisa, thank you so much, and please pardon my delayed reply. It was kind of a bad week all around.
DeleteI'm certain that when you face a terminal illness, everything comes into crystal clear focus unlike we, who do not face death daily, experience. I have a friend who was in a car accident last March and he should've died. His body on one side was so shattered that nearly every bone was broken including his hip, back and neck. But he's getting better every day and there's hope that he will walk again one day. And I see in him the clarity of purpose that you're talking about here, Andrew. It's more than simple busy work. Every passion and purpose becomes monumental because every second counts and may not continue. Thanks for sharing and inspiring us all to be more sensitive with our mates--dying or not.
ReplyDeleteThis comment has been removed by the author.
DeleteBeth, That's a good observation you make, that we need "to be more sensitive with our mates--dying or not." Yes, Andrew's perspective is unique and crystal-clear, but at the end of the day, *none of us* know how much time/energy/money/etc we have left!
DeleteAndrew, your posts certainly encourage me to give more credence to the other side of the issue or situation (whatever it is!); I hope the lessons are not lost on the loved ones I still have around me...
Beth, yes...'clarity of purpose' is a beautiful way of saying this. When the dross that is so easily accumulated is stripped away, and life becomes (as a poet said) 'beauty bare', it's hard to correlate that to the paradigm one lived before...and that one's caregiving spouse may still employ (at least to a degree).
DeleteThank you so much for being here, and please pardon my delay in replying.
Pat, thank you for being here and commenting. The best - and really only thing - that I can do these days is to hopefully use the written word to encourage, and perhaps challenge. I so appreciate what you've said!
DeleteAnd please pardon my tardiness in replying.
"...your terminally ill spouse is still a human beings, with hopes and plans that may seem irrational to you, but mean a lot to him or her."
ReplyDeleteOh, Andrew, how true a statement this is! And how we fail to think in this way; as a caregiver, it's so hard to think this way...but, regardless of the depth of illness...they ARE still human beings!
And:
"Illness is only a part of life, and the rest becomes far more precious when it might be lost."
Another truth...there IS so much more of life than just the illness (or the dementia; or the hearing loss; or the...whatever!). There is so much more...
Thank you for enlightening and inspiring us so much with your words!
Hugs and love and prayers for you and Barb...always!
Barbara, thank you so much for these kind, thoughtful, and loving words. They mean a lot to us, more than you know.
DeleteAnd the hugs and prayers are so appreciated! (And please pardon my delayed response. Bad week all around.)
People with illnesses are still human beings with all the same feelings as anyone else. Thank you for this reminder that "Illness is only a part of life, and the rest becomes far more precious when it might be lost." Your insights are so valuable to me esp. since I have two sons with MD - one in a wheelchair, the other still able to walk and climb stairs. They can easily get discouraged which is why I need to honor their dignity and the dreams that they want to pursue. Blessings to you, Andrew!
ReplyDeleteOh, Gayl! You and your sons will be in our prayers.
DeleteYou're a hero. They are lucky to have a mom like you. And we so appreciate your taking the time to be here. (And please pardon my delay in replying.)