Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Tue, Jun 18 10:23pm

My post tonight is nothing but venting and a bit of poor me. I’m caring for my husband with Parkinson’s and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I’m not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It’s impossible to even carry on friendships anymore, I’m unavailable when I’m invited which is becoming less frequent all the time
I don’t leave him anymore unless it’s to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

I guess all I can say validates why you shared: you are not alone. Not alone in what yoy are experiencing, and not alone tonight. Your reality is not what anyone who is not in a 24 hour caregiving role can understand. But we do.

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Hey there, I’m so sorry you’ve had so much on your plate; not only with yourself but your husband as well. My situation had differences from you, but at the end of the day I felt the exact same way you do. It is an extremely demanding job & you never know day to day what to expect. The fear of what to expect is sometimes debilitating. One thing I had to learn the hard way, twice, was the importance of taking care of myself. On more than one occasion I know I thought when is there ever time???? I’m sorry your family & friends cant pitch in or lend a listening ear. I know it’s not quite the same, but I am here to listen & let you vent anytime you need 😃. I don’t know if Hospice is an option for your situation, but they can be extremely helpful. They not only care for the patients, but the caregivers as well. Keep up the good work, remember to give yourself some credit, and don’t feel guilty for needing YOU time. You have to be well to care for your husband the way you feel is best. Take care & try to get some good rest tonight ❤️

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Hello @dem2301 I'm Scott and I'm sorry to read of your husband's journey — and yours, too! It certainly sounds like a highly challenging and difficult time for each of you!

I am glad you felt welcome to vent here! Every caregiver, everywhere has these moments, days, and weeks! No need to apologize or explain. Simply vent away!

I found caregiving to be extremely isolating while being my wife's primary caregiver during her 14+ year battle with brain cancer. We all need someone's shoulder to cry on at times, someone's ear to bend, find a kindred spirit who has been through the caregiving life, and someone to help us through the frustrations that are a part and parcel of caregiving. Again, I'm glad you found that here in the Connect community.

When we are caring for our loved ones it is always hard to remember this: Superman and Wonder Woman only exist in the comics. They are not caregivers and likewise caregivers are not superheros!

We get exhausted, overworked, worn down to our last nerve, and then have to somehow find a bit of reserve to rise up and keep going. It can also take a toll on our own bodies. I know I now have quite a bit of deferred health maintenance issues I have to now address, but delayed and ignored while activing caregiving.

The demands of caregiving are not highly understood, unappreciated by those who are on the outside looking in at our lives, and we are often the ones who bear the brunt of the anger/discomfort/lashing out by our patients, who love us, but who we likewise love greately!

It is a meat grinder at times and I am glad you are here!

If I can ask, how long have you been caregiving?

Strength, courage, and peace!

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@vickys

I guess all I can say validates why you shared: you are not alone. Not alone in what yoy are experiencing, and not alone tonight. Your reality is not what anyone who is not in a 24 hour caregiving role can understand. But we do.

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You hit on a very valid point in your post, @vickys Fellow caregivers understand and above all understand the love we put into our caregiving as well as the frustrations we cope with!

Did you find sharing with fellow caregivers beneficial? I couldn't do groups in person due to my wife's needs, but I sure loved finding an online caregiving communtiy here.

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@mkjames

Hey there, I’m so sorry you’ve had so much on your plate; not only with yourself but your husband as well. My situation had differences from you, but at the end of the day I felt the exact same way you do. It is an extremely demanding job & you never know day to day what to expect. The fear of what to expect is sometimes debilitating. One thing I had to learn the hard way, twice, was the importance of taking care of myself. On more than one occasion I know I thought when is there ever time???? I’m sorry your family & friends cant pitch in or lend a listening ear. I know it’s not quite the same, but I am here to listen & let you vent anytime you need 😃. I don’t know if Hospice is an option for your situation, but they can be extremely helpful. They not only care for the patients, but the caregivers as well. Keep up the good work, remember to give yourself some credit, and don’t feel guilty for needing YOU time. You have to be well to care for your husband the way you feel is best. Take care & try to get some good rest tonight ❤️

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Hi @mkjames You raise a crucial aspect of caregiving in your post: feelings of guilt! I wish there was a way to banish guilt from the lives of all caregivers. I know I always wanted to do everything and anything that would ease my wife's journey and when I couldn't for some reason, would be wracked with guilt. Caregiving comes with no training, often with little or no advance warning, and no employee manual! Suddenly we simply get dumped into the deep end of the pool (or middle of the ocean) and are told to swim as best we can.

Caregiving, as you noted, also often contains times of tremendous anxiety over what is to come, what is around the next corner, all when we are dealing with a full plate of 'today'! Living, as they say, 'in the moment' is very hard with caregiving since there is not only 'the moment', but the past moments of things undune, and the future moments of far too many things to get done! Then to top that off the slightest change in our patient can alter our entire caregiving landscape and every moment suddenly becomes different.

I will also endorse your suggestion of hospice. It was an extremely emotional and almost devastating moment when the doctor gave us the prescription of hospice care, but the care my wife received though hospice (she chose home hospice care) was second to none and one of the very few times her medical care was truly patient-oriented rather than healthcare-system oriented.

You capture the caregiving 'adventure' well!

Continued strength, courage, and peace

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I can truly sympathize, even though my situation is different from yours (dementia and a stroke). I find myself sighing a lot, even when I don't need to. I am so frustrated with the total lack of support or understanding from my husband's family. I feel very trapped some days and find it difficult to keep up with friends, much less see them. I would love to take a break away from my husband, just to regroup, but this seems very unlikely/impossible. So far, my health is holding up, but I am on more meds than before and some days that is not enough. I guess I am venting, too, as well as sympathizing. Try to find some time for yourself. I go to book club about once every 6 weeks. That's not much, but it helps. I take our dog for a walk at least once a day. I'm out, but nearby. I hope you can find help with your caregiving. We all feel overwhelmed, sometimes, and other caregivers understand. Feel free to vent any time!

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Thank you Scott for sharing your thoughts. I’m equally sorry for your struggles, both past and present, well, & future for that matter. 😊

I know when we got the offer for hospice, the first time, it was absolutely shot out the window. The second offer was no easier than the first, but much needed. In just a few short days the stigma was evidently removed from both our minds. I will forever be grateful to Emerald Coast Hospice for what they did for our family, exactly how I feel about Mayo now. I wish there were some way to advocate for Hospice agencies to remove the stigma entirely. I’ll have to look into that….

Your wife sure was a lucky woman to have you care for her. My caregiving adventure didn’t amount to as much as yours, isn’t it a blessing to be able to care for the one you love (in a way you would like to be cared for)? To this day, I still look back and think how lucky I was to have that special time with my Granny. I don’t remember the bad, only the good, & it instantly brings a smile to my face. I sure do miss her, as I know you do your wife. They watch over us today and are eternally grateful for what was done for them through love, & one day you will be rewarded for that service!

🙏Namaste🙏

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@mkjames

Thank you Scott for sharing your thoughts. I’m equally sorry for your struggles, both past and present, well, & future for that matter. 😊

I know when we got the offer for hospice, the first time, it was absolutely shot out the window. The second offer was no easier than the first, but much needed. In just a few short days the stigma was evidently removed from both our minds. I will forever be grateful to Emerald Coast Hospice for what they did for our family, exactly how I feel about Mayo now. I wish there were some way to advocate for Hospice agencies to remove the stigma entirely. I’ll have to look into that….

Your wife sure was a lucky woman to have you care for her. My caregiving adventure didn’t amount to as much as yours, isn’t it a blessing to be able to care for the one you love (in a way you would like to be cared for)? To this day, I still look back and think how lucky I was to have that special time with my Granny. I don’t remember the bad, only the good, & it instantly brings a smile to my face. I sure do miss her, as I know you do your wife. They watch over us today and are eternally grateful for what was done for them through love, & one day you will be rewarded for that service!

🙏Namaste🙏

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Thanks for the kind words, @mkjames I agree with you about the need to advocate for a better and often more accurate understanding of hospice and all it can offer. We were lucky to have a great one in our small town, but unfortunately the hospital they were affiliated with decided they didn't need to offer it and they couldn't make it on their own (very small organization).

Hospice made my wife's care so much better and I will admit easier for me. The doctor came to our home, her meds were actually delivered, and her primary nurses were truly amazing with her! The only thing I told them they needed to add was a once a month thump and tap checkup for the caregiver! When prescribed hospice, the neuro-oncologist said she might make it 6 months, but most likely far less. I believe it was a result of the high caliber of care she got via home hospice she was able to fight an additional 14 months.

I, too, will have to look into how to better advocate for that care.

I hope the sun is shining wherever you are today!

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First of all, thank you for the support and encouragement. Yesterday was a really hard day and I was absolutely exhausted. I've read the comments about hospice. When I feel along with his doctor input hospice will certainly be a major consideration. I just don't think we're there yet. The reason I'm unable to vent to my children is because they really want me looking for a care facility and again I'm not ready for that. I worked as a nurse for 37 years and feel I'm providing him with better care here at home. Some occasional in home help will be my next step. He's resistant to that idea but for my health I need to. I feel stress and anxiety are a big factor in cancer diagnosis and progression. I'm fearful of breast cancer recurrence if I don't get my emotional health back in check. Our oldest daughter died of lymphoma 6 years ago and she lived an environment of unrelenting stress and feel the reccurance she suffered 5 years after her original diagnosis played a part. Today is a better day, he noticed some flowers I arranged and said they where so pretty. The little things mean a lot.

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@dem2301

First of all, thank you for the support and encouragement. Yesterday was a really hard day and I was absolutely exhausted. I've read the comments about hospice. When I feel along with his doctor input hospice will certainly be a major consideration. I just don't think we're there yet. The reason I'm unable to vent to my children is because they really want me looking for a care facility and again I'm not ready for that. I worked as a nurse for 37 years and feel I'm providing him with better care here at home. Some occasional in home help will be my next step. He's resistant to that idea but for my health I need to. I feel stress and anxiety are a big factor in cancer diagnosis and progression. I'm fearful of breast cancer recurrence if I don't get my emotional health back in check. Our oldest daughter died of lymphoma 6 years ago and she lived an environment of unrelenting stress and feel the reccurance she suffered 5 years after her original diagnosis played a part. Today is a better day, he noticed some flowers I arranged and said they where so pretty. The little things mean a lot.

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Our in home care (one session for 4 hours a week, increasing to 2 times a week this week!) was a long sell…I started by getting my husband to agree to the idea in concept for down the road, then he and I interviewed two good firms in our home for potential use down the road, then signed a contract for use down the road, then tried a one 4 hour session to see how he liked it, for use again later down the road. He and the home health aide went to a movie, and he had such a good time we started the weekly sessions right away. He was glad for me and for himself and for the home health aide.

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We used a caregiving agency for years. The caregivers ranged from incompetent to marvelous. Unfortunately, the caregivers needed constant monitoring and lacked carry-over. "I forget," one kept saying. Unfortunately, some caregivers relied on me to the point that I was doing all the work and they watched me–hardly worth our thousands of dollars. We stopped using this agency and switched to another agency that has registered nurses and certified nursing assistants. It's comforting to be able to talk with caregivers who understand my disabled husband's needs. Every caregiver has been polite and eager to help out. Point of my story: If one agency doesn't work switch to another.

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@harriethodgson1

We used a caregiving agency for years. The caregivers ranged from incompetent to marvelous. Unfortunately, the caregivers needed constant monitoring and lacked carry-over. "I forget," one kept saying. Unfortunately, some caregivers relied on me to the point that I was doing all the work and they watched me–hardly worth our thousands of dollars. We stopped using this agency and switched to another agency that has registered nurses and certified nursing assistants. It's comforting to be able to talk with caregivers who understand my disabled husband's needs. Every caregiver has been polite and eager to help out. Point of my story: If one agency doesn't work switch to another.

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I'm so glad you have found a good agency. I agree patient advocacy is so very important. Our disabled loved ones need and deserve the very best care we can provide.
Thank you so much for your insight.

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@IndianaScott

Hi @mkjames You raise a crucial aspect of caregiving in your post: feelings of guilt! I wish there was a way to banish guilt from the lives of all caregivers. I know I always wanted to do everything and anything that would ease my wife's journey and when I couldn't for some reason, would be wracked with guilt. Caregiving comes with no training, often with little or no advance warning, and no employee manual! Suddenly we simply get dumped into the deep end of the pool (or middle of the ocean) and are told to swim as best we can.

Caregiving, as you noted, also often contains times of tremendous anxiety over what is to come, what is around the next corner, all when we are dealing with a full plate of 'today'! Living, as they say, 'in the moment' is very hard with caregiving since there is not only 'the moment', but the past moments of things undune, and the future moments of far too many things to get done! Then to top that off the slightest change in our patient can alter our entire caregiving landscape and every moment suddenly becomes different.

I will also endorse your suggestion of hospice. It was an extremely emotional and almost devastating moment when the doctor gave us the prescription of hospice care, but the care my wife received though hospice (she chose home hospice care) was second to none and one of the very few times her medical care was truly patient-oriented rather than healthcare-system oriented.

You capture the caregiving 'adventure' well!

Continued strength, courage, and peace

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Scott, very well-said. Caregivers vary in what they can handle. I felt truly blessed I could keep my husband and home, hospice for the most part was satisfactory. I would like to share more, just can't right now. While reading the posts my heart aches for each of you. and what you have been through and are going through.

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Reading your post I said that’s me in caring for my mom. I know how you feel…right now I’m deep breathing to get rid of sob and that tight feeling in my chest…and the pounding headache. This is the closest I can get to having a cup of tea with you….but I’m with you and holding your hand.
I get it…we are doing our best and that’s all we can do. Peace to you and the scent of spring lilacs.

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When I first joined this care givers group several years ago now, my sister was in the middle stage of generic dementia. I was so frustrated with her and myself and we kept backing into a corner of no win situations because she was confused and i wasn’t observant enough to know what was confusing her. The advice I got from someone in this group is that when you are in a tense/non communicative/ almost combative situation, use the 6 magic words. “I was just trying to help”. I used them within the first hour that I learned of them without any further commentary or explanation. and THEY WORKED. She diffused the firecracker temper, calmed down turned and walked gently away. That was all it took. I use them rarely but they have diffused an explosive situation many times. Maybe it would work for some of you.

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