Weary of Caregiving

Posted by susan2018 @susan2018, Thu, Jan 24 2:59pm

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.

Hello @susan2018 I am sorry to read how heavy a burden you are carrying. My name is Scott and I was just the caregiver for my wife and I know how overwhelming that was for me at times. I cannot imagine the burden you are trying to carry.

I know every situation is unique in families and caregiving, but my initial reaction is there is no way one person can do what you are trying to do. As I often say — the only place you find superheros is in the comics and not in caregiving!

I am wondering if you have looked into the visiting nurse program in your community or any local church-based groups that can offer actual help for you. Also might any of your family be Veterans and therefore eligible for some assistance via the VA?

I know first hand caregiving is a very tough, demanding, and unrelenting role. Might there be the possibility of some paid assistance for a couple hours a week for you?

Strength, courage, and peace!

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You're past year sounds like mine. I just do one day at a time, and I'm praying that this coming year will be better.

Liked by jodeej, susan2018, lah

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@IndianaScott

Hello @susan2018 I am sorry to read how heavy a burden you are carrying. My name is Scott and I was just the caregiver for my wife and I know how overwhelming that was for me at times. I cannot imagine the burden you are trying to carry.

I know every situation is unique in families and caregiving, but my initial reaction is there is no way one person can do what you are trying to do. As I often say — the only place you find superheros is in the comics and not in caregiving!

I am wondering if you have looked into the visiting nurse program in your community or any local church-based groups that can offer actual help for you. Also might any of your family be Veterans and therefore eligible for some assistance via the VA?

I know first hand caregiving is a very tough, demanding, and unrelenting role. Might there be the possibility of some paid assistance for a couple hours a week for you?

Strength, courage, and peace!

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First off, thank you for your reply this afternoon. Just finding this place where I know I can say what I feel is enough, I’m not looking for sympathy or praise or advice, just a listening ear which you so kindly provided me. I look around at the burden other caregivers carry and I feel guilty because I know I am capable of doing what needs to be done. I was feeling sorry for myself this afternoon when I wrote this. We have accessed local resources for my mother. I have a home health nurse that comes every two weeks to set up my mother’s meds and check her vitals as well as a housekeeper that cleans her apartment twice a month. On her own when she got out of the hospital Mother decided she wanted Meals on Wheels and also an aid for her bath. Mother is nearly blind, getting somewhat hard of hearing, has heart failure and arthritis which make her every day chores more difficult for her. She had been ordering groceries on her own for delivery but I just took that over because it is getting too difficult for her to read her list to the order taker. And of course I take care of all her paperwork and bills and shopping and checking on her. We are a small family, and as I said, we are all scattered across the U.S. including my brother and Mother’s younger sister in other states with no close relatives nearby. When I retired we moved to be close to my mother in order to make it easier to help out. We are fortunate in so many respects but my gas tank wS running on fumes this afternoon. Again…thanks, Scott. Take good care.

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@rmftucker

You're past year sounds like mine. I just do one day at a time, and I'm praying that this coming year will be better.

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I had hoped when we turned the calendar to the new year we could leave some of our challenges behind, but it hasn’t worked out that way. Wishing for better times for you too.

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@susan2018 I hear ya. I had one of those days last week. It's so wonderful to have this safe place to come to and vent. Everyone here has felt that same way many times. Take care.
Blessings,
JoDee

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@susan2018

First off, thank you for your reply this afternoon. Just finding this place where I know I can say what I feel is enough, I’m not looking for sympathy or praise or advice, just a listening ear which you so kindly provided me. I look around at the burden other caregivers carry and I feel guilty because I know I am capable of doing what needs to be done. I was feeling sorry for myself this afternoon when I wrote this. We have accessed local resources for my mother. I have a home health nurse that comes every two weeks to set up my mother’s meds and check her vitals as well as a housekeeper that cleans her apartment twice a month. On her own when she got out of the hospital Mother decided she wanted Meals on Wheels and also an aid for her bath. Mother is nearly blind, getting somewhat hard of hearing, has heart failure and arthritis which make her every day chores more difficult for her. She had been ordering groceries on her own for delivery but I just took that over because it is getting too difficult for her to read her list to the order taker. And of course I take care of all her paperwork and bills and shopping and checking on her. We are a small family, and as I said, we are all scattered across the U.S. including my brother and Mother’s younger sister in other states with no close relatives nearby. When I retired we moved to be close to my mother in order to make it easier to help out. We are fortunate in so many respects but my gas tank wS running on fumes this afternoon. Again…thanks, Scott. Take good care.

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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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@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!

Jump to this post

It’s helpful to hear how things are for you now, sometimes when a person feels overwhelmed it is easy to think it is going to be like that forever. Last night my husband seemed to be getting weaker so I took him into ER and he was admittedly the hospital. He’s so dehydrated that it has affected his kidney function. None of the tests have revealed a cause of his GI symptoms so right now he’s just getting IV fluids and electrolyte replacement. I didn’t get much sleep last night but came home now to eat and relax a bit. I know his needs are being taken care of there.

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@susan2018

It’s helpful to hear how things are for you now, sometimes when a person feels overwhelmed it is easy to think it is going to be like that forever. Last night my husband seemed to be getting weaker so I took him into ER and he was admittedly the hospital. He’s so dehydrated that it has affected his kidney function. None of the tests have revealed a cause of his GI symptoms so right now he’s just getting IV fluids and electrolyte replacement. I didn’t get much sleep last night but came home now to eat and relax a bit. I know his needs are being taken care of there.

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@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

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You are dealing with overload like most of us are at times. Take a deep breath, keep your friends close, and take them up on it when they offer help even if you aren't sure. Find a support group near you and they can be a great help. This is a great place for encouragement. We are always here for each other.

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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!

Jump to this post

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.

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@rmftucker

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.

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@rmftucker a laugh cures a lot.

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@martha7979

@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

Jump to this post

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.

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@susan2018

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.

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@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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@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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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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Hi I think many of us can relate. I just got back from taking my son to a scoliosis xray in Rochester. One thing that I have been doing for myself is go to the coffee shop and I get coffee and a breakfast sandwich and read. There's nobody to worry about and it's my time to decompress. Another thing I do is exercise. Exercise really helps blow off stress. Plus I have noticed that getting in better shape is helping me deal with the physical and emotional load of having a son with developmental disability. I have gotten to point where I try to participate in a 5k race every month. It does help me to focus on races and learning a new course. I don't think I can just walk on a treadmill because it would be boring. Good luck.

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