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Monday, May 11, 2015

Caregiver Frustration, Anger & Guilt

Two stories here. The first, as told to me by Bob's CNA (who comes in twice a week).  I call her "E."

E. was pulling into a drug store parking lot when she witnessed a man grab an elderly lady and "drag" her toward a car.

On hearing the beginning of this story, I said, "Oh my gosh! A kidnapping!"

E. said, "No, it was his mother."

So the story goes that E. slams on her brakes and jumps out of the car because, as she says, the man is  yelling at his mother in a way "one should never speak to a woman" and she confronts the man, who explains to E. that he had only gone into the store to "pick up one thing" and had told his mother (who has Alzheimer's) to wait in the car and when he was standing at the check-out he saw his mom ambling off across the parking lot, so he ran out and grabbed her and was taking her back to the car.

E. then tells the man that this is "no way" to "treat a woman".

The man tells her to "mind her own business" because she (E.) "has no clue" what it's like "to be a 24/7 caregiver".

To which E. responds that she knows full well as she has been "a caregiver" for over 20 years (meaning working as a CNA) and there is no excuse for his behavior.

All this erupts into a yelling match between the man and E. And when the man "shoves" his mom into the car and drives away, E. photographs his license plate number to report him to the police.

And I can only imagine what that man was feeling/thinking when he saw E. snapping photos from his rearview mirror...

Story #2 is more personal.  Let's call it "The MRI Day From Hell"....

Two weeks ago, Bob was scheduled at the hospital for an MRI. I was told to get him there 20 minutes early as they had to arrange for orderlies to lift Bob from his wheelchair into the MRI. So, I plan accordingly.

That morning, I got Bob bathed, dressed, shaved and ready to get up in his wheelchair with a good 45 minutes to get to the hospital. Then Bob tells me "pee" meaning he's going to pee and we have to wait on the transfer to the wheelchair. So, I leave the room and double check my purse (do I have everything I need? cell phone? etc.) and when I return to his room I find that GAA! somehow Bob's catheter tube had gotten disconnected from the cath bag and there he was, blissfully unaware, peeing all over himself!  And his pants and bed were soaked...

So, good thing I left plenty of time, because now I had to remove his pee-soaked clothes and wash him and also change the soaking sheets out from under him (no small feat) and put on new sheets and new clothes...

And then it was up into the wheelchair and there are good transfers and bad ones and, of course, that day we had an awkward bad transfer that took more time than usual. Then out to the van, where Bob immediately ran one wheel off the ramp and GAAA!! nearly tipped over. Then finally into the van and on our way and I'm looking at my watch thinking well, we won't be 20 minutes early but we will at least be on time for the MRI, when Bob announces he wants "a smoke". And I tell him there is no time for a smoke, but he insists and gets whiny about it, so I pull over (as there is 'no smoking' on the hospital campus and that includes the parking garage) and let him have a smoke and that takes a few minutes but I'm thinking I'm only 2 minutes from the hospital and we have 15 minutes to get to the MRI room and we should be OK.

Of course, once in the parking garage I can't find a wheelchair van accessible parking spot, they are all taken and I have to stop at the valet who directs me to a space that is (GA!) parallel parking which I am absolutely no good at, but I-- with much trepidation and after several white knuckled tries -- I manage it and by this time, we are late and I am more than frazzled.

But I get the van parked and the ramp down and Bob's chair unhooked and Bob backs up and somehow backs up into the space between the driver's seat and the rear seat of the van and he can't go forward or backward and the wheelchair wheels are just spinning as he pushes the joystick. So I try to help him, but manage only to make it worse and end up having to pull the plug (so to speak) and throw the chair on manual over-ride and try to pull that heavy wheelchair out of its predicament and I finally succeed only to have Bob take over the controls and back himself up INTO THE SAME POSITION that I just freed him from and GAAAA!!! I SNAP! And I YELL something like "WHAT DID YOU DO? TAKE A STUPID PILL THIS MORNING???!!"

And of course at that moment, the valet appears asking if I need help and I tell him "no" and I do manage to get Bob back out of the corner and down the ramp and we are now 10 minutes late instead of 20 minutes early and I'm trying to rush but Bob is tooling sooooo slow and we take a wrong turn and get lost (this does not help) and finally make it to the MRI room a good 20 minutes late instead of 20 minutes early.

I get us checked in.  And I sit down.  And it's then I look at Bob and see tears streaming down his face....

And shoot.  Do I feel like the winner of The Bad Caregiver Of The Year Award? You betcha.

I mean, I feel like a total, absolute shit.

And then, everyone in the MRI suite is asking what's wrong.

Oh my.... what does one say?  And I say something like we had some trouble getting the wheelchair out of the van and got lost and are late and we are both just frazzled... And thankfully, no more questions are asked. And Bob goes off for the MRI and everything returns to normal...

I guess I'm sharing both of these stories because E's story really bothered me. I don't think she should have confronted the man and his mother in the parking lot.  I mean, who is she to judge? Not knowing these people, what they go through, and only seeing this one small snapshot in time?  And I certainly don't think she should have reported him to the police!   jeepers

And I don't think many folks (even CNA's -- which by-the-by is ABSOLUTELY NOT the same thing as caring for a loved one) understand what it's like to be a 24/7 caregiver to someone you love (unless they've actually done it) and how often you feel both physically and emotionally helpless and the frustrations (and anger and guilt) that come with the turf.

Being an unpaid/volunteer/doing-it-out-of-love/never-having-a-break caregiver is NOT an easy job, emotions run high, both good and bad ---  and even the best of us have bad days, it really can't be helped -- it's called "being human" -- and we all (me, the guy in the parking lot, all of us caregivers) need just a little understanding.


PJK :o) said...

Hugs to you both. The dynamics of a marriage change when one of you becomes a carer, doesn't it ? It's easy for other people to see you out & about & think everything's OK. They don't know what you've had to do to GET out & about or how long it takes. And once one thing goes wrong, everything else follows. Some days, all you want is for night time to hurry up so you can just drop into bed. One day, it'll all go smoothly. ONE day :o)

Barb Polan said...

You have far more patience and grace than anyone could hope for in your situation. I am mobile and very self-sufficient, but every once in a while, my husband snaps and grumbles about how "high maintenance" I am. I drive, I go to therapy by myself, I grocery shop and cook, I've been weeding our gardens for the past month, you get it - and I'm "high maintenance"? Seriously?

Keep it up, Diane - you're doing wonderful work.

Jenn said...

How many times have you gotten to an appointment and had to wait and wait and wait....and wait? Please let yourself off the stress hook here. You've done the best you can under the circumstances. Think of it this way, perhaps the delay kept you out of harms way somehow.
And so you yelled at your husband. He whined at you, his wife, for a normal is that? Very.
I agree with you regarding the CNA and her encounter. Perhaps she could have offered up a kindness to the man instead of an accusation.
God bless you both. God bless the two previous commentors <3

Anonymous said...

I'm the 24/7 wife/caregiver for my husband who has MS, Addisons, and in January had a stroke. My Mom is a lung cancer survivor and she lives with us as well.
I can absolutely relate to everything you wrote.
All I can add is "Well said".
And I think sometimes we just have to remember we're only human as well...and forgive ourselves, too.

Lauda said...

Sometimes when we are going places and it is one thing after another slowing us down - I try to put myself in an almost Zen state to mask the angst that I am feeling and to try to overcome it. Sometimes I jut close my eyes as I am waiting for each and every slow move that my stroke challenged husband makes. Part of me is thinking - no one knows what I am going thru one knows.

Grace Carpenter said...

It sounds somewhat like parenting a toddler, but much harder. Every parent has awful parenting days, and has said things they regret later. You're absolutely right: it's called being human.

Helen of Wi said...

I guess it's a good thing E didn't see your interaction on the MRI day. She could have called out the SWAT team! Ya, you are right. She probably over-reacted to the Alzheimer's mother-son interaction, but then again, he probably shouldn't have left her alone. My mom had Alzheimer's and I wouldn't have dreamed of leaving her unattended for even a minute. You are such a talented writer. You make your struggles readable without sounding whiny. Keep up the good work.

Anonymous said...

I agree with you. Unless you walk in someone's shoes for a day do not comment about their life. Being a caregiver is not easy. I do not have it half as bad as you and still lose my cool sometimes. We are all human, and have a breaking point. Stay strong Bob is lucky to have you!


deedee53 said...

WOW! Thanks SO much for sharing this! Love the way you brought the two stories together. Blessed my socks off! We have days like this all the time, and the guilt from getting impatient or frustrated CAN be overwhelming. Encourages and empowers me knowing we are not alone in this daily struggle!! Keep it up!