"I don't want to live any more."
These are the hardest words you'll ever hear from a terminally ill spouse, and as a caregiver there is a good chance that one day you will hear them.
And what do you do? What on earth can you say?
And how could your husband or wife say that to you?
It feels like a slap in the face. It makes the bet efforts you brought to caregiving, not to say your marriage, seem at best unappreciated, at worst worthless. It hurts.
It is not, however, about you. It's not a judgement on what you've done, or how well you've loved.
It's simply fatigue, pain, and fear.
Fatigue comes not only from the progress of an illness itself, which certainly drains energy, but also from the endless rounds of medical appointments and tests and waiting rooms and hospital stays and medications and...well, you get the drift. And the thing is, with a terminal illness, this doesn't end. It's a life sentence of feeling more and more like a piece of meat, being rushed along a conveyor belt and tested by harried and rushed doctors and technicians.
Pain may be physical, but it's also psychological, knowing the future that you aren't going to see. Walking through your house and realizing that it won't know your footsteps before long...and knowing, for some people at least, that your presence will be replaced. There will be another person in your seat at the table, another person on your side of the bed. And that hurts.
Fear isn't limited to fear of death; it's more proximally the fear of losing independence, or losing mobility, or having to wear 'adult diapers'. It's the fear of being phased out of life while you're still alive, and becoming chattel within your own home, within your marriage.
And sometimes, a person just wants it to end. There's no happy ending, but one can wish for an ending.
And what do you, as a caregiver, do?
First, don't try to belittle the statement, or counter it with "you have so much to live for!" You've got to show respect and consideration, and the best way to do that is with a simple, "I'm sorry."
Don't try to fix it. Don't append to the sympathy by saying something like, "I'm sorry...what can I do to help?"
You can't fix it, but you can build a road to healing by listening without judgement, and without making any of it about you.
You see, the spoken desire to die may well be a feeling, and feelings pass. It's hard to remain at the bottom of the pit forever, and there is every chance that your mate may begin the long climb back if you just offer a friendly and quiet hand.
That being said...this is something that should be mentioned to a medical professional, because it can be caused by medications...or the lack of them.
And, if it goes deeper than in most people, it can lead to serious depression...and in extreme cases, suicide.
There's an acronym I have for the best way to deal with someone who doesn't want to go on living...it's LIFT.
Listen without judging or interrupting
Inform the healthcare team
Forbear to take any of it personally, even when it feels personal.
Touch with a loving heart, and no demands.
What do you think? Other strategies?
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.
Writing LIFT in my journal. Thank you. Love to both of you, all of you. aarf aarf.
ReplyDeleteSusan, please forgive my late reply...and thank you!
DeleteXOXOX WOOF!
Is this where you are currently, Andrew? Or is it just where you have walked on this up and down terminal journey? I don't want to tell you "not to feel that way" but I certainly want to know if that's what you are feeling and to pray more fervently for your hurting heart. So much grief is involved in dying--sometimes more than a person can take.
ReplyDeleteBeth, please excuse my tardy reply...and there are times I have felt the pull of this feeling, but I've never been there. For me, it's been kind of like walking along a cliff-edge on a very dark night. I know the fall is there, and while I acutely aware of it I have to walk on.
DeleteMost of the time, I still want to see tomorrow, because I have faith that Jesus has something planned. Perhaps for me, perhaps in a way I can help someone else...but I don't want to turn away from Him.
Feelings document the emotion. They are neither right or wrong. Despair can be turned if and when gratitude is encouraged in one's life. It is difficult to do, but it can make a tremendous difference in outlook. There is always something we can be thankful for, whether seen or Unseen.
ReplyDeleteNorma, YES! 'Despair can be turned when gratitude is encouraged...'
DeleteThat is so very, very perfect. Thank you!
Andrew, I have to admit that I had many of the same questions as Beth as I was reading your post. While it is always a relief to "see you" at Coffee and Conversation, I was alarmed at the title. I'm glad to hear that this is NOT where you're at these days...but I continue to life you and Barbara in prayer.
ReplyDeleteHaving walked my dad through his last days this past December, I know how real it is to just get tired of it all. You share some important truths that all of us who walk with someone in their ending days need to know - I'll be sharing this everywhere I can...
Thanks, as always, for stopping by, Andrew...