Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

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 was very fortunate as my mother liked to write and she was a great letter writer and keep many of the letters she received through the years. I have been scanning them to make sure they get passed around. She also left stories of her and my father's early life, which are very interesting. I was 6 years old when WWII started and I remember it as a child. I asked my mother to write what she experienced with ration books and shortages, as her experiences were much different than mine. I ran across that a short time ago, and it will be another keeper for our family.

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@evett

I wish I would of asked my mom more about her parents and her grand parents. What her child hood was like. What her favorite holiday tradition is. Her favorite childhood memory. I purchased a book for her to fill in, but never seen it, other than one time after giving it to her.

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I’m going to start doing this (asking questions and writing the answers) with my husband for our son!

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@IndianaScott

As an amateur genealogist, I, too, wish for those stories to be retold! So many questions I would ask, so many people I would ask about. I have so many vague memories I'd like to have filled out more! The book could be a great idea! I always asked my folks to record some of their stories, but they would always say to me 'what? You think I'm going to die?' So they never did…unfortunately!

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The Jewish tradition is a living will, my brother did this with my mother and father. Even though I truly cherish the CD of them, there are questions, I never thought to ask. A friend posted this on face book today. With due respect, the last moans and groans of a wealthy Atheist…
"The world's six best doctors"
Steve Jobs Died a billionaire at age 56. This is his final essay:
I reached the pinnacle of success in the business world. In some others' eyes, my life is the epitome of success. However, aside from work, I have little joy. In the end, my wealth is only a fact of life that I am accustomed to. At this moment, lying on my bed and recalling my life, I realize that all the recognition and wealth that I took so much pride in have paled and become meaningless in the face of my death.
You can employ someone to drive the car for you, make money for you but you cannot have someone bear your sickness for you. Material things lost can be found or replaced. But there is one thing that can never be found when it's lost – Life. Whichever stage in life you are in right now, with time, you will face the day when the curtain comes down.
Treasure love for your family, love for your spouse, love for your friends. Treat yourself well and cherish others. As we grow older, and hopefully wiser, we realize that a $300 or a $30 watch both tell the same time. You will realize that your true inner happiness does not come from the material things of this world. Whether you fly first class or economy, if the plane goes down – you go down with it.
Therefore, I hope you realize, when you have mates, buddies and old friends, brothers and sisters, who you chat with, laugh with, talk with, have sing songs with, talk about north-south-east-west or heaven and earth, that is true happiness! Don't educate your children to be rich. Educate them to be happy. So when they grow up they will know the value of things and not the price. Eat your food as your medicine, otherwise you have to eat medicine as your food.
The One who loves you will never leave you for another because, even if there are 100 reasons to give up, he or she will find a reason to hold on. There is a big difference between a human being and being human. Only a few really understand it. You are loved when you are born. You will be loved when you die. In between, you have to manage!
The six best doctors in the world are sunlight, rest, exercise, diet, self-confidence and friends. Maintain them in all stages and enjoy a healthy life.

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@evett

The Jewish tradition is a living will, my brother did this with my mother and father. Even though I truly cherish the CD of them, there are questions, I never thought to ask. A friend posted this on face book today. With due respect, the last moans and groans of a wealthy Atheist…
"The world's six best doctors"
Steve Jobs Died a billionaire at age 56. This is his final essay:
I reached the pinnacle of success in the business world. In some others' eyes, my life is the epitome of success. However, aside from work, I have little joy. In the end, my wealth is only a fact of life that I am accustomed to. At this moment, lying on my bed and recalling my life, I realize that all the recognition and wealth that I took so much pride in have paled and become meaningless in the face of my death.
You can employ someone to drive the car for you, make money for you but you cannot have someone bear your sickness for you. Material things lost can be found or replaced. But there is one thing that can never be found when it's lost – Life. Whichever stage in life you are in right now, with time, you will face the day when the curtain comes down.
Treasure love for your family, love for your spouse, love for your friends. Treat yourself well and cherish others. As we grow older, and hopefully wiser, we realize that a $300 or a $30 watch both tell the same time. You will realize that your true inner happiness does not come from the material things of this world. Whether you fly first class or economy, if the plane goes down – you go down with it.
Therefore, I hope you realize, when you have mates, buddies and old friends, brothers and sisters, who you chat with, laugh with, talk with, have sing songs with, talk about north-south-east-west or heaven and earth, that is true happiness! Don't educate your children to be rich. Educate them to be happy. So when they grow up they will know the value of things and not the price. Eat your food as your medicine, otherwise you have to eat medicine as your food.
The One who loves you will never leave you for another because, even if there are 100 reasons to give up, he or she will find a reason to hold on. There is a big difference between a human being and being human. Only a few really understand it. You are loved when you are born. You will be loved when you die. In between, you have to manage!
The six best doctors in the world are sunlight, rest, exercise, diet, self-confidence and friends. Maintain them in all stages and enjoy a healthy life.

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A great essay, but I have to say this was not left, written, or said by Steve Jobs. But someone put it together and it has some interesting aspects to it for sure.

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@becsbuddy

@debiobrien I know how hard it is to lose a parent, but you never really lose them. They are in you forever, especially your mom. You have given so much.
I know you’ve said that your family is real small now and your siblings are not close to you. Do you connect with them by phone? A call just to see how they are, not to talk about how difficult things are for you. Just say you’ve really missed them and hope you can have a phone relationship. Maybe you could ask them to write down something they remember of your mom and aunt and you all could share good times. We got my mom to write a short ‘story’ about her childhood as they moved from army post to army post in the 1920s. I the found the old photos that go with her story, integrated them, and made copies for everyone. This might be good for your aunt. It would be good for her and everyone else to see how she was when younger and healthier. Include your brother and sister in making a memory book and maybe you’ll make a family again.
Whatever you do, I know you’ll do it with love for your mom

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Becky, My brother has not spoken to me in 3 years now. he got so abusive and turned into my dad because of all the hate and ager he has helped in him for all thee years.
i told him about himself 3 years ago and how much he was hurting our mom and he has not spoken to me since that day. i dont expect to see him until my mom or aunts funeral. he didnt speak to my sister for 5 years once and then saw her in 2010 at out dads funeral.

My sister is 5 years older than me and she fled home when she was 18 and i was only 13 and we just never had time to bond and the age difference seems to be an issue with her. we speak now on occasion and she is nice to me she does not hate me but we are just not close sisters. we love each other she just has her life and im not part of it.
she has a lot of serious health issues and fought cancer 3 times and she has lupus and other issues . i send her emails and sometimes she responds she just does not have time for me.
i have a few cousins but they all live in other places and sates so have not had a relationship with them since we were kids. i dont think my brother or sister would ever be interested in doing the memory but its a nice idea..my mom and aunt both made scrap books for each of us kids quite a few years back so all of us kids have one.
so its kind of like a memory book. there was so much abuse in my family on both sides there were not many GOOD memories so i think our book would only be a couple pages unfortunately. not many nice memories.
im trying to make new nice memories with mom and aunt now so at least i have some nice memories that dont include abuse of any kind.

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@evett

I wish I would of asked my mom more about her parents and her grand parents. What her child hood was like. What her favorite holiday tradition is. Her favorite childhood memory. I purchased a book for her to fill in, but never seen it, other than one time after giving it to her.

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i asked my mom all that and wished i had not as her life was hard and not a good one as her mother died when her and my aunt (twins) were 3 days old from complications of child birth we were told and their father was killed when they were 6 and a mean abusive grandmother (their moms mother who blamed them for the lose of her daughter (their mother) raised them till they were 12 and she died and a mean aunt took care of them till they were 16 and they ran away and quit school and went to work and then at 18 they both married horrible abusive men and the rest of the story is not nice. unfortunately
not many good memories in my family.

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I wished I had started doing that with my husband earlier. I have a nice book where there are questions about his life, but it soon became apparent that he could no longer remember the details and i had to answer most of the questions as well as I could. I guess I should start doing the book I have that I'm supposed to complete.:(

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Scrapbooks are such a nice idea. Just today I got a picture from an old friend of me and my date at a formal dance in HS. She was looking through some of her old scrapbooks from the late 50's. Fun.

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dont know if this type of posting is allowed if not delete it. just saw it and thought it was great for the caregivers. so be patient and kind to your caregivers and understand their moods sometimes. we do get tired and emotional so just try and understand and dont feel guilty and we all do it out of love.just appreciate us. https://www.facebook.com/Kellyrtreehouse/photos/a.1904026693212179/2415496382065205/?type=3&theater

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Love that, "I was just trying to help". I'm also learning that my tone of voice makes a big difference too. I need to speak softly when he or I am frustrated or in a hurry. Everything takes so much longer now, so I need to give us extra time to get ready to go somewhere, etc.
My dilemma tonight is asking for wisdom and help for both my husband's and my care during my recovery from a total knee replacement in 10 days that I just found out about this AM. My son will be able to take care of my husband who has ALZ during the first day while I'm in the hospital and that night, but his wife will probably be working and only have a day or so to stay with us. A friend who just had the same surgery is needing round the clock care and I may need to hire a caregiver for both of us. Friends are offering to help but can't stay with us day and night.

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@leeandpat

Love that, "I was just trying to help". I'm also learning that my tone of voice makes a big difference too. I need to speak softly when he or I am frustrated or in a hurry. Everything takes so much longer now, so I need to give us extra time to get ready to go somewhere, etc.
My dilemma tonight is asking for wisdom and help for both my husband's and my care during my recovery from a total knee replacement in 10 days that I just found out about this AM. My son will be able to take care of my husband who has ALZ during the first day while I'm in the hospital and that night, but his wife will probably be working and only have a day or so to stay with us. A friend who just had the same surgery is needing round the clock care and I may need to hire a caregiver for both of us. Friends are offering to help but can't stay with us day and night.

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@leeandpat Is there an Area Agency on Aging in your county, or senior services agency? Explain your situation. It seems there should be someone like a home nurse to help you out for the needed time? Check with your husband's Dr for suggestions, also. Perhaps someone from your local caregivers' support group will have resources to tap in to? Let us know what you find out, we care here at Mayo Connect.
Ginger

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@leeandpat

Love that, "I was just trying to help". I'm also learning that my tone of voice makes a big difference too. I need to speak softly when he or I am frustrated or in a hurry. Everything takes so much longer now, so I need to give us extra time to get ready to go somewhere, etc.
My dilemma tonight is asking for wisdom and help for both my husband's and my care during my recovery from a total knee replacement in 10 days that I just found out about this AM. My son will be able to take care of my husband who has ALZ during the first day while I'm in the hospital and that night, but his wife will probably be working and only have a day or so to stay with us. A friend who just had the same surgery is needing round the clock care and I may need to hire a caregiver for both of us. Friends are offering to help but can't stay with us day and night.

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I had to read this twice to see who wrote it, after just reading the first paragraph. Those are almost my exact words to myself in my journal (it took me too long to learn that…!)
You have such an extra load about to hit. I so wish I were there and could help. I’ll – we’ll – be with you in spirit!

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