Weary of Caregiving

Scott, as I was reading your memory of STP, I thought your were going to mention Geritol. That is the advertised drug I remember that was supposed to relieve everything except "do the breakfast dishes." We need a little humor every now and then. Remember it is easier to laugh than to cry.

@susan2018
It's a diifficult and weary road, especially when you receive little support. Trust your husband recovers quickly and you have have time for you while he is being cared for.
Are his GI problems causing his dehydration and depletion of electrolytes? My husband has similar admissions. He is on oral supplements and still low levels. His appetite is poor and it is difficult for him to decide what he would like to eat. We have resorted to iced coffee, icecream and smoothies with fresh fruit, greek yoghurt, eggs and milk. Other small meals to his liking of his chosing.
He has a distended and inactive colon which results in frequent loose bowel motions and malabsorption I feel. No one can tell us when or even if it may resolve.
May it all work out for you. Love and hugs. X

Yes. They aren’t sure what is causing his diarrhea either. Had multiple labs and tests. He had an ileus, inactive colon, after open heart surgery in Sept. It took a week of trying many things to get his bowels to wake up after the surgery, then he went in the other direction. He finally settled down and has been fine since until last Tuesday when all h*** broke lose. Your husband’s situation sounds difficult, for both of you. And electrolytes levels are so crucial. Hope your wknd is calm.

@susan2018
We are rowing a similar boat. To make a long story short my husband had a cystproctatectomy early Oct. Was discharged with an undiagnosed ileus and pelvic abcess three weeks later. He required admission to ICU 8 days post op, when he had 7 litres of aspirate drained immediately and 1 litre every 4 hrs for 24 - 36 hrs until it began to reduce. He had a NDE experience his first night in ICU. All this was in a private hospital where I had stayed mostly 24/7 and my concerns were generally ignored.
A little over 24 hrs after discharge I was forced to call the ambulance and had him transferred to our public hospital who could never understand how he was discharged. He underwent emergency surgery for a pelvic abscess and peritonitis, admission to ICU and another 5 week stay. He had a flexible colonoscopy and later a neostigmine infusion to attempt to 'kick start' his bowel with little effect honestly. It was 7 weeks until he passed flatus.
He was discharged 30 Nov and it continues to be a struggle. His quaillty of life has been effected majorly. He has had to withdraw from 2 state NFP committees he has been on for years, one as chairman as he is unable to perform his judicial duties. It is heartbreaking given he spent 6 months 'training' prior to surgery to ensure he was in the best possible shape. The staff at the public ICU say it is probably the reason he didn't die.
It is heartbreaking to say the least and others think because he is home he is OK which is so far from the truth.
Hope your husband is doing well and your weekend is peaceful. Take care. X

When my husband had his ileus after open heart surgery he was so desperately miserable,
It’s the only time I’ve ever seen him sink into a deep depressive state for several days. I can only imagine what it was like for your husband (and you.) And still is. Weeks of stress, not knowing, losing touch with your normal day to day life. Yes, they did a colonoscopy for my husband too. That relieved the pressure of the gas but what finally got things going was the medication Amitiza. The GI doc said it would basically cause cholera-like diarrhea. And it worked. Of course, then it threw his electrolytes off and caused his heart to go into atrial fibrillation which extended his hospital stay. He went home on Amitiza and gradually reduced the dosage. I’m wondering now if all that left his bowels especially sensitive and vulnerable to common GI bugs. Norovirus has been going around our community and that is what I thought he had originally. Labs came back negative, however the doc says if there is any blood in the stool specimen that can negate the results. So the mystery remains. Right now the big problem is that his kidney function has been affected by the dehydration and while it improved a little over last night, not much. Thanks for your response and writing about your awful but interesting experience.

When I posted on Jan 25 about my husband being admitted to the hospital during the previous night, I had no idea we would still be there 12 days later. Finally today he came home much improved. He had two CT scans, an MRI, a Colonoscopy, daily blood work, IV fluids and IV electrolyte replacement—and yet no definitive diagnosis for his diarrhea, except that there was some infectious process going on. He did have some biopsies taken during the colonoscopy to check for Microscopic Colitis, but results are pending. I spent the major portion of every day at the hospital because at first my husband was too sick to know what was going on and even when he is feeling well, bright as he is, he doesn’t have a good understanding of medical care. I have used up all my adrenalin and today which should have been a big relief turned into a stress fest. It snowed all morning so while I was running necessary errands related to my husband as well as my mother, I had to clear snow off the car at each stop, seven times! When I got to the pharmacy to pick up my husband’s meds and they said it would be awhile, maybe half an hour, I almost started crying. All I wanted was to get home. And when I did, my husband, who I had dropped at home earlier, pulled up the sleeve of his shirt and showed me the IV the nurse had forgotten to remove. So back to the hospital. Then back at home my husband broke a ceramic soap dish in the bathroom and you know that meant a thorough floor cleaning. Now my son who lives in a metro area that is currently being blanketed with the snow we had this morning has been calling asking us to check road and traffic conditions—he’s been on the road three hours and he isn’t even half way home on a trip that normally takes half an hour. Part of the stress is all that must be tended to, but even more for me is the overstimulation of all the people and vigilant interactions that have been filling my days.

@susan2018
We are rowing a similar boat. To make a long story short my husband had a cystproctatectomy early Oct. Was discharged with an undiagnosed ileus and pelvic abcess three weeks later. He required admission to ICU 8 days post op, when he had 7 litres of aspirate drained immediately and 1 litre every 4 hrs for 24 - 36 hrs until it began to reduce. He had a NDE experience his first night in ICU. All this was in a private hospital where I had stayed mostly 24/7 and my concerns were generally ignored.
A little over 24 hrs after discharge I was forced to call the ambulance and had him transferred to our public hospital who could never understand how he was discharged. He underwent emergency surgery for a pelvic abscess and peritonitis, admission to ICU and another 5 week stay. He had a flexible colonoscopy and later a neostigmine infusion to attempt to 'kick start' his bowel with little effect honestly. It was 7 weeks until he passed flatus.
He was discharged 30 Nov and it continues to be a struggle. His quaillty of life has been effected majorly. He has had to withdraw from 2 state NFP committees he has been on for years, one as chairman as he is unable to perform his judicial duties. It is heartbreaking given he spent 6 months 'training' prior to surgery to ensure he was in the best possible shape. The staff at the public ICU say it is probably the reason he didn't die.
It is heartbreaking to say the least and others think because he is home he is OK which is so far from the truth.
Hope your husband is doing well and your weekend is peaceful. Take care. X

Good morning @susan2018 I hear you I hear you! 'Running on fume', 'no close family nearby', and the never ending 'paperwork'!

It all truly is exhausting! No other word for it!

I actually found Mayo Connect by accident when I, too, was running on fumes. My wife has a large family (5 siblings) and I have two sisters. But as opposed to when I grew up in Ohio and had every grandparent, aunt, uncle and cousin within walking distance, now none of these folks even live in the same state. Closest relatives were my sisters, who over my wife's entire 14+ year war never once set foot in our home, called, wrote, or offered any assistance other than one time telling me "well, if you're so (explicative deleted) tired leave her home and go check into the ER". Once, when I actually answered honestly when one of her siblings asked me 'how are you doing Scott' immediately dialed his cell phone and told the other siblings within my earshot, 'Scott is whining and looking for sympathy'. No question caregiving can be brutal and no one should ever feel guilty when they cannot do it all or for how they truly feel!

I never did figure out the paperwork maze! It was never ending and still crops up from someone who decides I still owe them something which I had overlooked, sometimes from years earlier and some doctor or test I can no longer even recall.

I remember, when I was a kid, there was a product on the market and they advertised on TV all the time. It was called STP and was some kind of gasoline additive to make your car run better. I often said to my wife, on those days I was in 'fumes mode' that I needed some STP! I never found anything to put into my gastank to refuel other than whatever sleep I could manage! Plus I learned to let a whole lot of things go to save energy. Dust bunnies happily populated our home, my shirts never saw an iron, I had to buy a second laundry basket for dirty clothes, and I am embarrased to say an entrie room became a junk room where things got stored I didn't have the energy or time to deal with.

Fellow caregivers, no matter how tired, beat, or exhausted, always have big shoulders and willing ears! Speak up, speak often, and never worry that it will be taken as anything other that venting! We all need that safe place to be our caregiving selves!

The only tip I have for reenergizing is that I did learn how to nap sitting up 🙂 Have you found any ways to help bounce back when on empty?

Strength, courage, and peace!