We are also linked with Wedded Wednesday.
This week's word is TRUST.
Execute.
Sooner or later, it has to happen. Caregiving for a terminally ill spouse takes everything out of you, and more...and it's easy to let slip the controls, and vent about how hard this all is.
To your mate.
It's not the message you want to send, or even something you believe...but the message received is "a part of me wishes this were over".
It's not abnormal that you may indeed feel that way, atleast on some level. We're not Jesus, and part of being human is wanting to see an end to an ordeal.
But to express that to someone who depends on your help to cope with each day, and to live, is unforgivable.
I'm saying unforgivable deliberately, because you'll have broken something that can't be fixed under the aegis of terminal illness.
You'll have broken trust.
When you're dying, the vows you took become a lot more meaningful...in sickness and in health" suddenly becomes real, and you realize how dependent you are, or will become.
And you have to trust your husband-or-wife-turned-caregiver to honour that. When you're dying, you have to do your part through cooperation, but control passes over to someone else at some point.
And if you can't trust them, if you think there's a stopwatch ticking off the life from which you suddenly feel your departure is desired...that's the worst thing.
Break that trust, and you may break the reason for living.
It's a huge responsibility, and it's grossly unfair that you can't express yourself to your mate.
Duty requires that you don't.
And that is why regular counseling is needed. You need a safe place to vent, to scream and throw things and crush pieces of paper into little balls.
A place and person to which you, as a caregiver, can trust to bare your soul.
Endex.
This was another very hard post to write, but I hope that it speaks to one of the issues of which most people never speak...that sometimes you do want a dying person to die more quickly...not "to end their suffering", but to end YOURS.
It shouldn't be a source of guilt; and it should be faced.
And here is what I was listening to while I wrote this...
And here is what I was listening to while I wrote this...
Brave brave Andrew,
ReplyDeletebravo! I'm so glad you mentioned this. It is so necessary to address it.
Selfishly always joyful when we see your post pop up for another week! It brought to mind a verse of anguish, "How long, O Lord?!" (I'm posting the entire passage here-only 6 verses)
Guess how he ends it? "But I have trusted in your steadfast love"
Psalm 13: 1-6
How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?
Consider and answer me, O Lord my God;
light up my eyes, lest I sleep the sleep of death,
lest my enemy say, “I have prevailed over him,”
lest my foes rejoice because I am shaken.
But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because he has dealt bountifully with me.
P.S. thank you. The pups really didn't do much to the book...it was like a birthday present! (Mine was Monday)
That's my favorite Psalm!
DeleteOne of my favorite worship songs is based off of it (written and performed by Nate Hale, whom is an alumni of my college :) )
Check it out if you're interested, it's beautiful!
https://www.youtube.com/watch?v=EmaZAJ7HaqI
Tammy, HappyBirthday!!!!!
DeleteAnd thank you for the psalm. I love it.
I never really feel like, "How long, O Lord?" It's a bit surprising to me. My foremost thought is "Please, give me tomorrow."
And Jordan, thank you for the Youtube link!
Love this post and your bravery! Caregivers are a gift from God! Thanks for sharing!
ReplyDeleteBethany, thank you so much. They are indeed a gift from God, and like so many of His gifts...they're often taken for granted.
DeleteBy the person for whom they care, by their families, by society...but NEVER by God.
Thank you so much for being here!
Oh Andrew. It really is important to bare our souls to a safe person. We can't keep our thoughts bottled up in side. I so appreciate your honesty, transparency and vulnerability. I love that Tammy shared Psalm 13 above because I'm sure you wonder that many days: "Oh how long Lord?" I'm parked in the 11 spot this week.
ReplyDeleteTara, thank you...I loved the Psalm, too. But as II mentioned above, I never really think, "How long, O Lord?"
DeleteFor me, it's "please, give me tomorrow".
There have been those who have said I am quite mad; perhaps this is the proof!
Thanks for being here, Tara. Your comments always warm my heart.
I appreciate your honesty throughout your journey. We all need those people we can bare our souls to-- and they need to be safe, as you said. It took a friend of mine to point out to me how i couldn't talk about my mental health issues with my mom because she wasn't a safe person- she doesn't understand, so she makes it all worse. Thankfully I learned and found the people I could really bare my soul to-- both in counseling and friendship.
ReplyDeletePraying for you.
Jordan, yes...and I am so glad you found those places of safety.
DeleteI had that problem with PTSD. It's hard to describe exactly WHY you've got some hard-wired responses to sudden stimuli, and why you can't 'get over it'. Once, working on a construction project, a sudden noise nearly sent me diving off a 40-ft scaffold. When I had recovered and calmed down...a bit...I went over to smite the person responsible for causing that sound without warning.
A Viet Nam veteran saw the blood in my eyes; he picked me up bodily and threw me into a truck. Not easy, as I am was then about 5'10" and 200 lbs of solid muscle.
Sometimes safety has to take you by the hand, so to speak!
Thank you so much for being here and sharing your experiences.
Hi Andrew! This is a critical piece many miss in caregiving. So glad you brought it to light. And from your perspective, being the one ill, even adds more truth and transparency to why it's necessary to find a safe outlet for the caregiver. Continuing to pray for you.
ReplyDeleteThanks, Julie...it is very, very important. Some of the most damaging comments, when a caregiver doesn't have an outlet, can be those said under the breath that are yet heard. They add an extra twist to the 'trust' issue...a really bad one.
DeleteThank you so much for being here. I always appreciate it when you stop by.
Hi Andrew! This is a critical piece many miss in caregiving. So glad you brought it to light. And from your perspective, being the one ill, even adds more truth and transparency to why it's necessary to find a safe outlet for the caregiver. Continuing to pray for you.
ReplyDeleteThank you for your honesty. It brings me joy to see a new post from you, especially since I know they are hard for you to write. Continuing to send prayers to you and Barbara. God bless you.
ReplyDeleteMichele, thank you! It is getting harder and harder - physically - to write, and the subjects are getting more personal, and sometimes are quite painful. But it feels like what God wants me to make of this...so I want to do it.
DeleteThank you so much for being here. Your presence and your comments mean a lot to me.
Andrew...always happy to see your doggie picture linked up at Kate's. I'm not doing FMF during October as I'm head deep into the 31 days exercise in Proverbs. Come visit me if you feel up to it. I so get what you wrote about, I do hope Barbara has someone to talk to - YOU HAVE US! xo
ReplyDeleteo that's why I didn't see you at FMF! I'll definitely come by and visit.
DeleteI'm so glad I have you guys; I would be lost without y'all.
Oh, yes. When I'm not online, I'm an elder law attorney and I work with a lot of caregivers. Those being cared for need loving care, but so do their caregivers. Blessings to you both.
ReplyDeleteElder Law can be a daunting profession, or so I have been told. Thank you for being a part of it. We need more people like you.
DeleteIt's so sad how caregivers are often overlooked...unless they are perceived at not measuring up. Then there's no escaping the pitiless light.
Thank you so much for being here today.
This makes me think of the young man in a coma who heard his mother say, I wish you were dead. Because he was still aware though not able to express himself, the words were majorly hurtful. He did not forget them. Trust is a fragile bond that connects us but is easily shattered. Your post is a good reminder of this.
ReplyDeleteI remember hearing about that, Norma. Words just can't be pulled back, and sometimes can't be forgotten, even with the best will in the world.
DeleteThank you so much for being here!
This is an excellent vantage point to show. Really. I watched a family go through this ordeal for four years. It was this awful pendulum of wanting more time and then wanting it to end so people's lives could more on...its almost like both people are dying..and prolonged death is so hard to do every day. It's like this awful journey with so much emotional upheaval at all times. A constant storm of feelings between cherish moments and simply wanting to be able to let time slip by and not notice it or try to hold on to it because this could be the last. I totally get this post. Great issues to bring up
ReplyDeleteSummer, you brought up the perfect metaphor - the pendulum. Thank you!
DeleteProlonged death IS hard to do every day...and sometimes a break, a vacation...makes it harder, because you don't WANT to go back to see, with fresher eyes, what illness is doing. There isn't a winning hand to play.
Thank you so much for being here.
Andrew this one took a lot of courage, to say, to post and to hear! It's SO wise to advise that someone has a place to vent those thoughts that haunt us but should never be spoken. Trust is so closely linked to love and if we feel that we can't trust then we must not be loved. Thank you for sharing your journey and advice. You're incredible.
ReplyDeleteCarol, thank you! It was hard to write.Very, very hard.
DeleteAnd the love-trust connection is definitely there...and that's unfortunate, because neither really follows from the words that break the trust.
The words reflect a passing fleeting, and the misfortune was to say them...we all have those moments of weakness, in other areas, areas where it doesn't seem to count for so much.
And it doesn't follow at all that one isn't loved, even as we may curse the younger sibling who put the tack on our chair at the family Christmas dinner, we WON'T. as we threaten, do him in.
At least, I didn't. I waited years until he brought his fiancee to visit, and then placed a very dead (and frozen) rattlesnake, coiled, on his plate at dinner.
But I still loved him.
Thanks for being here!
Oh Andrew, sensitive and caring (nope, I refuse to believe your reputation as a hard-liner here).
ReplyDeleteIf you hear Barbara say "I wish this was over..." and I hope you don't, but if you do, you KNOW that the 'this' is not you. She doesn't wish YOU to be over. But I'll bet she wants to wish away your pain. I'll bet she wants to wish away your tired. Yes, you both need safety nets, you both need to rant. It sounds like you have the counseling in place...
I was pleasantly surprised (more like flabbergasted, but that's another story), when I was in a horrible, dark Valley of Shadow. David ranted at God about his circumstances. I wanted to rant like that. So I took his words and made them mine. And I learned about the sovereignty of God. "Contend, Lord, with those who contend against me..." Praying comfort and relief for you, Andrew...
Janet, thank you! And you're right, barbara's wishing THIS were over is a wish that the pain be gone, by whatever means necessary.
DeleteWords are so imperfect, and the way we think them and speak them are so flawed. Not to mention how they are heard.
In the end, one has to depend, for trust and love, on the years of hard evidence in the relationship, and not a fleeting sentence, spoken at wit's end, overwhelmed by heartache.
And yes, David did rant at God...thank you for reminding us. I see God taking it on the chin, not condescendingly, but in sorrow for what His friend had to endure.
Thank you for the prayers, and for simply being here.
Hi Andrew, reading these words I could feel my heart heavy and it brought my eyes to tears.
ReplyDeleteI will continue to pray along with you and Barbara.
I see the Lord holding your hand and safely leading you through this journey.
Friend, you both are not alone.
Sweet Blessings to you and Barbara
Ifeoma, thank you so much for the loving thoughts and prayers. They are appreciated, and needed.
DeleteAnd thank you for being here. We are not alone; God, and His human hands, arms, and hearts, surround us.
Yes, to this -->'You need a safe place to vent, to scream and throw things and crush pieces of paper into little balls.'
ReplyDeleteI'm a big advocate of counseling with someone who's safe, qualified, confidential ...
For those who are living. And those who feel like the end could be quite near ...
You're right, Linda. Both parties need counseling of very different types (and perhaps from counselors of different personalities). And they don't need to hear each other's words spoken to the counselor.
DeleteThank you for being here, my friend. You are in my prayers.
I was talking with someone the other day about how we all would be better friends, spouses, neighbors with counseling. We all have issues to work through! Thank you for bringing that to light - I think many need to hear that wisdom. ~Annie
ReplyDeleteAnnie, you're so right. We ALL have issues to work through, and the help of a counselor can make that road so much smoother.
DeleteThank you for being here...and you may be interested in knowing that your first name is shared by the heroine of my latest novel, "Emerald Isle". (And if your last name happens to be Ryan, the serendipity would be complete.)
I can't imagine how hard all of this is for both of you. But to be the one dying and in constant pain and then hearing how hard it is to take care of you would be like kicking a wounded man when he is down. I'm sorry if that's something you've encountered lately, Andrew. It doesn't really take the sting away, but maybe it brings a bit of understanding to a situation that none of us fully comprehends except you. Hang in there, my friend! We are all amazed at your tenacity in the face of continual obstacles and blows.
ReplyDeleteIt has felt that way, Beth...and it takes looking beyond that, to the evidence of the years of a shared life, to see that the words are simply an artifact of a passing feeling, that they represent not ill-will, but a moment's desperation.
DeleteI'm definitely still in for the long haul. The last couple of days were dreadful - hence the late replies - but I do not intend to quit, nor would I take an out offered, even by God Himself. This is a job worth doing.
Thank you so much for being here.
:: brought to my knees ::
ReplyDeleteI'm the caregiver/spouse who did, in fact, say to her husband that it was incredibly hard to manage everything all on my own all the time. He was my confidant and we talked about EVERYTHING and it never occurred to me that, in that particular case, I should have edited myself.
I need to think and pray about this because now, in my second marriage, I am looking at caregiving again. As hard as it was to read this post, I'm glad you wrote it because I so desperately want to do it all better this time.
Shelby, my heart goes out to you for what you've endured, and for the courage it must have taken to comment. I think you are awesome, and you have added so much to this conversation...I thank you from the bottom of my heart.
DeleteYou are in my prayers, brave heart.
Yes, Marie, absolutely! I feel strongly that couples should have individual counselors or trustworthy confidantes. Same-sex, obviously.
ReplyDeleteAnd I also think that marriage counseling should happen twice a year, as a checkup, even when nothing's wrong. That way problems can be caught early, and the counselor has the baseline understanding of that marriage's normal dynamic.
It takes a few fewer lattes every month to pay for it...I wonder why so few people do it!
Thank you so much for being here, Marie.
Hello Andrew, This post is very insightful and brave. How generous of you to consider the caregivers view on things. I have been caregiver twice in my life. Once to my (almost) fiance (he was diagnosed with a stem cell tumour just the day after we had decided to become engaged) and recently to my mother who has been diagnosed with Altimeters/ Dementia... Both times were/are difficult, and a resentment of sorts did creep into my heart, but never against my two loved one's...The resentment was aimed at their and my "Life Interrupted" so rudely with no explanation that made sense. Yet, with hindsight I can trace the hand of God throughout it all when I re-read my journals and think/talk about these periods. Will keep you and your wife in my prayers...
ReplyDeleteHi Andrew, thanks for visiting my blog so I could find yours. This is so much wisdom and insight in this post. Thank you for your openness. Praying for you and your wife- it must be so difficult for both of you.
ReplyDeleteI so wish I would have known that I needed counseling when Pedro was in crisis. It would have been nice to have a human to vent to--it also would have made recovering from my caregiving stint a lot easier!
ReplyDeleteYes, Andrew...that "trust"; that feeling that you have someone who will take care of all that you cannot. I sense at times my husband has these feelings; he knows I will do those things; yet he cannot actually express those feelings. What comes out is the anger, the frustration, the accusations that fall on me, the one trying to deal with it all. Yet, do I stop to "see" what he may be feeling? Probably not; and that is what I should be doing!
ReplyDeleteThank you for sharing your thoughts...and for continuing to share your "series" - your "BOOK"!!
Still thinking of you; and praying for BOTH OF YOU!