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.

@debiobrien

who are you responding to ??

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my mom gets around better than me she walks a mile every morning then works in her many gardens for a couple hours and then rids a stationary bike for 3 to 5 more miles. my aunt just sits in a recliner in her house and waist for the lord to take her home. she goes to the doctr and to grocery shopping with lots of help from me and mom but nothing other than that.

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@evett

My 92 year old neighbor would wear mini skirts, and would only hang around young people. She always tried to make the very most out of each day. If you focus on losing them, you will miss the present. My mother was sick the last years of her life, and it would get exhausting, so I understand that part of what you are going through. We always found things to do with her. Don't think about losing them, concentrate on making lasting memories.

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@evett Welcome to Mayo Clinic Connect. We're glad your here, and I want to thank you for remindi g us to look at the present, as it is a gift, and not focus on the future. We all have an expiration date, but we don't know what that date is. @debiobrien You understand your situation, and are making the most of it. I know from your background, you are a planner, and don't like the unexpected, so you think about when your mom will be gone. That is normal for most people. But, please, do not let that be the center of your energy. Make what you do now and have now, that center. Build the lasting memories. My dad was real sharp mentally until he passed; his body wore out. He always talked about things he did, and dearly wanted to get to the 2012 elections [he missed by 5 days]. I always told him "Thank you" for letting me be part of his life, even in the negative times. It makes me who I am today.
Ginger

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@kimspr3

Hi Ginger, I see a Psychologist she had a session with my husband. He's Passive Aggressive. I found a good site on line and it explained P.A. so well. He read it, agreed and that's the end of that. Today the remote to my pain pump is not working properly I told him he walked away. Yet he did a lot of work around our home. I Thanked him. My Psy. as you suggested told me to keep a ledger. I have been doing that on and off. Coloring is a big help. I appreciate your protection. You will never know, I can't explain it. Thank You I hope you are comfortable today!

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@kimspr3 Having something to distract you is very helpful. I use my crafting for that a lot, as there are days my body cannot do much physical activity. Keeping a journal, getting your thoughts out on paper can be therapeutic. Write it like a letter to your friend who understands everything. No need to send it anywhere, you could even burn afterwards. But I do know the act of "getting it out of your system" is cathartic. Dealing with a passive aggressive person is not easy. Did the psychologist give you pointers on how to have a relationship with a passive aggressive person?
Ginger

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When she is gone, you find someone else to take shopping, and needs someone to help them. That's what I did. After my mom passed away I did hospice volunteer work. And then my husband had AML and went through a transplant. it was eight years ago we started with treatment. And he his always having issues. Had prostrate cancer three years ago. We spend a lot of time at home. And if something happens to him before I go, I have already decided I will go back to volunteering. I love spending time with older people. They all have a story.

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Have you tried to find someone to come and stay with him while you go out, shopping? The catholic church has an angle program, volunteers go and stay with the sick so the caregiver can get a break. It's very important for you to even go for a walk. You have to refresh, so you can be there for him.

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@evett

When she is gone, you find someone else to take shopping, and needs someone to help them. That's what I did. After my mom passed away I did hospice volunteer work. And then my husband had AML and went through a transplant. it was eight years ago we started with treatment. And he his always having issues. Had prostrate cancer three years ago. We spend a lot of time at home. And if something happens to him before I go, I have already decided I will go back to volunteering. I love spending time with older people. They all have a story.

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actually i think it will finally be time for me. I have never taken care of myself or put myself first so maybe it will finally MY time . but maybe your right maybe i will find someone else to care of as that has been my whole life.

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@kimspr3

Hello rcjk, You helped already. I have never met so many, sincere, caring People. It does my heart good! For me it means so much. I have PTSD and I know you all are sincere. Meeting your husband was a "Love Story." I to try to do funny things to make him laugh, make sure his laundry is done, Healthy good meals. He seldom shows feelings, I will look into the Post Intensive site, April. My husband is not protective I used to be able to handle that because I was Independent. I worry also about what this does to him. I always say "I'm sorry" "I feel so guilty" I took know it's not Logical. I'm tryingcnot to do that but he is not a communicator, I am. What is he thinking? It was nice meeting you. Wishing you both a Happy Day!

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@kimspr3 this is Rhoda. @rckj. Glad to hear from you and glad I could help a little. The loss of some of my independence bothers me too and I’m always apologizing or not asking or asking timidly. It’s a tough one. I have some PTSD too, also an ongoing struggle. But things do improve and I am fortunate in my choice of husband! I’m lucky he is a communicator like me. Sometimes making decisions on which way to go on a medical decision is hard but we do have therapeutic help. I highly recommend it. It helps us figure out which way to go next and how to stay emotionally close, despite the obstacles.
Hope to talk again and wishing you all the best, Rhoda @rckj

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@debiobrien

im doing that also me and mom do things and i have to just spend time at my aunts and she rarely leaves her house only to show for food and go to the doc but me and mom go to church and other things. we are talking about the movies and maybe even trying some fishing but when its cooler. But losing her always stays in the back of my mind as i have no idea what i will do when i lose her as she is all i have. i have watched over her and protected her and taken care of her my entire life. my father was not a nice man very abusive so i always had to protect her against him. i was also a cop for over 25 years so its in me to take care of people/ the more i try to not think about losing her the more i think about it. it is inevitable who knows when but i know i will have to deal with it one day. my family is real small now and most have passed and the ones still alive even my brother and sister are not close to me. it will be a shock to my life and i will be lost as to what to do when she is gone.

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@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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@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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What a sweet idea. Sometimes life doesn't turn out to be what we expected when we were young but God often finds a way to help us fill the gaps as we grieve over our disappointments. I bet there are lots of lonely people who have similar losses and would love to be your friends.

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Scrap booking is another fun activity to do with them.

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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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@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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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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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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