Weary of Caregiving

Posted by susan2018 @susan2018, Jan 24, 2019

I feel like I’m being nibbled to death by ducks. I’m weary of caregiving. Whenever I think things are getting better something else happens. I worry that I am the person who is holding everything together. I’m frustrated that I’m looked at as being capable and strong enough to help everyone. I’m scared I’m not going to stand up to the stress. I know that others reading this know exactly what I mean. My husband had a heart attack and open heart surgery this fall and was in the hospital In another town for a prolonged period with complications. At the same time my brother was seemingly having worrisome heart symptoms. My son’s father in law had a stroke. The mother of my son’s significant other was hospitalized and died. All at the same time. All of us scattered across the country. We had to cancel a vacation trip. Another family member was discovered to have serious kidney problems.Then it was Christmas with all its attendant responsibilities. Over this time we had out of state houseguests off and on for a total of about three weeks, some of the time to help me with tasks I needed help with while my husband was recovering. Then my daughter in law had issues at work and has been looking to me for guidance and support. Then my elderly mother who lives “independently”, only because I do many things for her, got sick with a terrible respiratory virus and ended up in ER. I had been scheduled for an elective one day surgery procedure in the city away from our town and had to cancel it. Then before my mother completely recovered she got sick with Norovirus and ended up hospitalized. I had to sanitize her apartment. She is back home but has required additional support. Then my husband came down with probably the same Norovirus that has been rampant in our community. I confined him to a bedroom hoping I can avoid catching this and knowing I’m going to need to sanitize this too. Yesterday Mother fell asleep in her chair with a pot on the stove setting off a smoke detector, calling me in distress. Today my husband in his weakened state fell in the bathroom. I had rescheduled my surgery for next week, but am concerned with my husband recovering, as well as traveling while the winter weather forecast is so horrible, hoping I can stay healthy and that my mother manages ok the days I’m out of town. We have a Caregiver Support group in our town. I guess I’m a candidate for membership even though what I’d really like is to just go away someplace by myself, away from phones, e mail, and texts knowing someone else is taking care of everyone and everything.

@susan2018

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.

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@susan2018 Do hope there has been further improvement in your husband's kidney function. The waiting for the lab results is nail biting for you both. The fluid replacement in my husband's case resulted in oedema in both extremities but resolved the kidney damage. Each intervention comes with its own side effects it would seem. We need to stay strong and believe that all will improve. We have learnt to live a day at a time so we are not overwhelmed with what MAY happen tomorrow. As a friend says to me the world axis tilts a little giving us a new view. We need to simply enjoy the new view! Keep us posted.

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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.

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@susan2018

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.

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Oh Susan, I understand. I think I may have started crying at the pharmacy if it had been me. I pray you get a good night's rest and that your son gets home safely.
Blessings,
JoDee

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@martha7979

@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

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I have thought about you and your husband and wonder how you both are doing? Are any of your husband’s issues resolving so he can gain strength? Are you able to go out and about and participate in normal day to day activities? I hope things are better.

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@IndianaScott

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!

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Good afternoon @IndianaScott, you made me cry with these words, you have validated us caregivers again! You should go straight to Heaven and no stopping along the way, when your time comes. I am doing one day at a time here, so far, so good.

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Good morning and thanks for the kind words, @virginiatc No saint, just a guy who, like you, did it one day at a time! I'm glad to hear you are doing well!

I like sharing about caregiving here on Connect since I feel free telling it like I see it. I get quite tired of the barrage of (to me) unrealistic hogwash we see, hear, and read far too often on caregiving.

Currently my least favorite is a TV advertisement by a for-profit organization of home health aides, which includes the phrase 'after all we promised Dad we'd keep Mom at home'. GRRRRR! That is not always possible and to set people up and sell that unrealistic expectation irks me no end! When it came on last night I yelled at the TV so loudly our pup jumped up and barked at me!

In second place are the all too common articles by or about celebrities or the wealthy who tell stories of the amazing things they do for their caregiving, which again unless you have 'people', a privileged corporate position, or a ton of money are not what the average person encounters as they struggle with caregiving. Again it sets unrealistic expections for the vast makority of regular folks. Back in 2010 around this time of year (the 8th year of my wifes' war) I answered the phone at my home office. It was exactly 8 am and in two sentences I was fired from my job by my new boss who told me, even though I was the top producer in the division, she didn't want anyone on her team 'who had anything other than the job on his mind', meaning my wife's illness. Two days later I read an article in a national publication entitled 'caregiving was the best time of my life' about a senior vice president who, when her husband was diagnosed with cancer was told by her company she would continue to get full pay, full benefits, all the time she needed at home, and that her job would be open for her when she returned. That one really made me nuts! I don't believe that is the norm and, again, wonder how much damage that does to those who are treated differently by their company. Worse, perhaps, is the damage it does to non-caregivers as they think that is what caregivers get from their employers.

OK, I will put my soapbox away now. I promise! Then again it does feel good to vent 🙂

May the force be with you and all caregivers today.
Strength, courage, and peace!

Liked by virginiatc, cmael

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WOW! I never knew others could treat caregivers so badly. Scott I’m so sorry. And after all you so lovingly did for your wife. You are one of my heroes. My struggles are still with getting used to my sister’s limitations. She is still so mobile after a hip replacement and is a “go-er”. I am a “happy at home” person. Nothing compared with you guys. Most of us just keep on keeping on .

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@IndianaScott

Good morning and thanks for the kind words, @virginiatc No saint, just a guy who, like you, did it one day at a time! I'm glad to hear you are doing well!

I like sharing about caregiving here on Connect since I feel free telling it like I see it. I get quite tired of the barrage of (to me) unrealistic hogwash we see, hear, and read far too often on caregiving.

Currently my least favorite is a TV advertisement by a for-profit organization of home health aides, which includes the phrase 'after all we promised Dad we'd keep Mom at home'. GRRRRR! That is not always possible and to set people up and sell that unrealistic expectation irks me no end! When it came on last night I yelled at the TV so loudly our pup jumped up and barked at me!

In second place are the all too common articles by or about celebrities or the wealthy who tell stories of the amazing things they do for their caregiving, which again unless you have 'people', a privileged corporate position, or a ton of money are not what the average person encounters as they struggle with caregiving. Again it sets unrealistic expections for the vast makority of regular folks. Back in 2010 around this time of year (the 8th year of my wifes' war) I answered the phone at my home office. It was exactly 8 am and in two sentences I was fired from my job by my new boss who told me, even though I was the top producer in the division, she didn't want anyone on her team 'who had anything other than the job on his mind', meaning my wife's illness. Two days later I read an article in a national publication entitled 'caregiving was the best time of my life' about a senior vice president who, when her husband was diagnosed with cancer was told by her company she would continue to get full pay, full benefits, all the time she needed at home, and that her job would be open for her when she returned. That one really made me nuts! I don't believe that is the norm and, again, wonder how much damage that does to those who are treated differently by their company. Worse, perhaps, is the damage it does to non-caregivers as they think that is what caregivers get from their employers.

OK, I will put my soapbox away now. I promise! Then again it does feel good to vent 🙂

May the force be with you and all caregivers today.
Strength, courage, and peace!

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I have the same reaction to that “we promised Dad” ad. I may have yelled at the tv a time or two myself. It is so wrong and manipulative. And anyone who asks a family member to promise something like that, either for themselves or another loved one, doesn’t understand the limits of caregiving or is just being selfish. I can’t imagine what it must have felt like to be fired like that. Here you were already trying to do all you could to take care of your wife, you know, being a good person, and how are you rewarded? By being fired. Geez. Anyway, you are doing good here, and I hope feeling some satisfaction, by letting caregivers let their hair down, in a safe setting and more anonymously than “complaining” to family or friends who can’t understsnd. Some days our personal resources run low and we need to tell someone. On other, better days, we can listen to someone else with compassionate understanding.

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Scott, you are a treasure here. You have such good advice for others and even are able to see some joy through the tears and frustrations.

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@sallysue

WOW! I never knew others could treat caregivers so badly. Scott I’m so sorry. And after all you so lovingly did for your wife. You are one of my heroes. My struggles are still with getting used to my sister’s limitations. She is still so mobile after a hip replacement and is a “go-er”. I am a “happy at home” person. Nothing compared with you guys. Most of us just keep on keeping on .

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Good morning @sallysue It is good to hear your sister is still a go-getter! That is a great asset for her!

Keep on keeping on and wishing your sister my best — and to you as well!

Continued strength, courage, and peace!

Liked by sallysue

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@susan2018

I have the same reaction to that “we promised Dad” ad. I may have yelled at the tv a time or two myself. It is so wrong and manipulative. And anyone who asks a family member to promise something like that, either for themselves or another loved one, doesn’t understand the limits of caregiving or is just being selfish. I can’t imagine what it must have felt like to be fired like that. Here you were already trying to do all you could to take care of your wife, you know, being a good person, and how are you rewarded? By being fired. Geez. Anyway, you are doing good here, and I hope feeling some satisfaction, by letting caregivers let their hair down, in a safe setting and more anonymously than “complaining” to family or friends who can’t understsnd. Some days our personal resources run low and we need to tell someone. On other, better days, we can listen to someone else with compassionate understanding.

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Good morning, @susan2018 It is really nice to know I'm not the only one who reacts to that advertisement the way I do! Sometimes, in some cases, keeping your loved one at home, no matter how much we may want it, it is simply impossible! They are selling snake oil in my mind!

Tnanks for the kind words and yes, I get find comfort and satisfaction here being able to listen to, visit with, and hopefully help out the Society of Caregivers 🙂 We are a unique bunch, with uncommon, but yet common, struggles, and challenges in the everyday with our patients.

Don't know if I told you my 'pillow' story, so I apologize if I have. For years I kept an old feather bedpillow on our sofa in the living room. Past its useful life, it was my 'bad day' frustration punching bag! On the really, really bad days (every caregiver knows their versioin of that day) I would quietly go into the living room and either cry into it so my wife couldn't hear me, or I would treat it to a good punching session to relieve the tension! It really helped, until one day when I was really at my wits's end and let it rip a bit too hard, tore the pillow, and ended up with a living room full of feathers everywhere! At first I was so mad, then realized how funny it actually was and couldn't stop laughing! I remember my wife asking me why I was laughing while I was using the vacuum!

For old times sake I still keep a pillow on the end of the sofa, but it is an old foam one now 🙂

Cheers!

Liked by susan2018

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@rmftucker

Scott, you are a treasure here. You have such good advice for others and even are able to see some joy through the tears and frustrations.

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Good morning @rmftucker You make me blush! Thank you!

In the early days of my wife's illness when I was really struggling with depression our adult daughter told me I should work hard, each day, to find at least three things that made me happy that day and she would do the same in return. We agreed to send an email first thing in the morning telling each other what our 'happies' were from the day before. Somedays they came easy, some days they were a huge challenge to find and may have been 'I was happy it didn't rain' or 'I was happy I made it through the day not crying'. Hopefully you get the idea.

Now, nine years later and my daughter and I still exchange that email daily!

May some joy come your way today!

Liked by susan2018

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I’m just catching up and I read your post. I understand….and I’m sorry you have so much going on that is just out of your control. some days I can judge what kind of a day it will be by when I start to cry or when the walls start closing in on me. I get it! Join your caregiver’s group…it will help. So will deep breaths!

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@providence1960

I’m just catching up and I read your post. I understand….and I’m sorry you have so much going on that is just out of your control. some days I can judge what kind of a day it will be by when I start to cry or when the walls start closing in on me. I get it! Join your caregiver’s group…it will help. So will deep breaths!

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Thanks for your words of encouragement. You sound like you well know the feelings of sometimes being overwhelmed. A bit of an update here. Mostly things are better. My husband has been doing fine except for a really bad cold he came down with this week. I am scheduled for eye surgery next Tuesday, a procedure I have had to reschedule three times because of my mother’s and then my husband’s hospitalizations. I had a few really bad moments this week when I realized he was sick as he was going about sneezing and hacking away spreading germs hither and yon, wondering if I could avoid catching it. I just cannot call the surgeon’s office and cancel again! So far so good. Another concerning factor has been the weather. We have to travel 150 miles to get to the surgical center and all winter we’ve been alternating between snow, wind and cold. Another blizzard is predicted for tomorrow but it looks like we may be blessed with a window of travelable weather this week. Crossing fingers and making appeals to the weather gods. And because some other gods roaming the universe have a wicked sense of humor, this week I was called back for further diagnostics after an abnormal mammogram. That was another bad moment. Thankfully my clinic got me in for tests quickly and results came back just as quickly that everything was OK. I have discovered a good way to decompress is knitting (quite ineptly, but what the heck) while watching college men’s and women’s basketball. There’s almost always a game on some TV station. You all have the best weekend you can!

Liked by virginiatc

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@susan2018

Thanks for your words of encouragement. You sound like you well know the feelings of sometimes being overwhelmed. A bit of an update here. Mostly things are better. My husband has been doing fine except for a really bad cold he came down with this week. I am scheduled for eye surgery next Tuesday, a procedure I have had to reschedule three times because of my mother’s and then my husband’s hospitalizations. I had a few really bad moments this week when I realized he was sick as he was going about sneezing and hacking away spreading germs hither and yon, wondering if I could avoid catching it. I just cannot call the surgeon’s office and cancel again! So far so good. Another concerning factor has been the weather. We have to travel 150 miles to get to the surgical center and all winter we’ve been alternating between snow, wind and cold. Another blizzard is predicted for tomorrow but it looks like we may be blessed with a window of travelable weather this week. Crossing fingers and making appeals to the weather gods. And because some other gods roaming the universe have a wicked sense of humor, this week I was called back for further diagnostics after an abnormal mammogram. That was another bad moment. Thankfully my clinic got me in for tests quickly and results came back just as quickly that everything was OK. I have discovered a good way to decompress is knitting (quite ineptly, but what the heck) while watching college men’s and women’s basketball. There’s almost always a game on some TV station. You all have the best weekend you can!

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I’m happy to hear things have gotten better for you. It is so important for you to keep up with your medical appointments. I’ve been able to have caregivers here in the mornings … when I can’t get morning appointments I take my mom along and she comes in the room with me…I do that because she loses track of time and it’s easier on us if she is with me…

We watch a lot of game shows and ice skating. TIVO is my best friend.

Weather has been hard and now that the days are getting longer and Spring is a blink away I’m feeling better. We are in a city with great public transportation and it’s often easier to hop a bus or train than drive downtown and fight that traffic and parking.

A good weekend to you…hope the sun is out where you are because I’m looking out the window and not seeing anything…we are in a fog!

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