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.

@becsbuddy

@kimspr3 I can understand your anger, but it doesn’t help you. Is there someone you can talk to? Your minister? A therapist? Support group? Can you look around? It would certainly be helpful. You also mentioned wanting to volunteer. Have you checked with your local hospital? Or day care centers? I know you don’t drive, but many towns have ride services for those who can’t drive. Good way to get to a volunteer job!
Or maybe you can research assistance for the disabled. Will you try some of these suggestions? We really care about you

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Hi Becky, When people care I appreciate it so much thank you so much. People caring is so rare It always makes me cry. I see a Psychologist only when my husband can bring me. About once a month I can't sit long, stand, long, bending I use one of the handicap sticks for laundry etc. Hard to shower, bending, twisting so sponge baths. I would like a support group, clergy, it's getting there. I live in the country everything is spread out. I called clergy, there was no one close to pick me up. I never thought of calling Assistance for the Disabled. I promise I will do that after the holiday. I will look into what you suggested. I"m here also for others. Will you be going to a BBQ? Hope you, are feeling good today?

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@debiobrien

LOL when i saw it i figured you meant abused lol great minds think alike

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You got that right Deb!

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@colleenyoung

Hi Kim, I brought @rckj into the discussion by mentioning her @username. You don't have to do anything. If she gets the message, she'll join the conversation.

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Thats OK

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@vickys

You gave many of us a much needed chuckle! We understood!

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Happy I could help, belly laugh!

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You have a right to vent. Holding it in is not healthy. You are right, no wants to hear it. Today was a bad day, I text my cousin I guess needed to talk because I wanted to end this. My husband gets me going, sarcasm I wanted to scream and I did. His response, "something is wrong with you!" I felt, how to get away help me. I thought of "that" so I needed to calm down or what ever. Never responded. People don't want to hear it. Children, not all but run away. I learned my lesson. I go to no one! Hope your feeling a little better or better than a little.

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@sallysue

That’s OK. Probably most of us speak autocorrect. I do and enjoy reading your posts.

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Thank You so much. You make me smile, that is a positive for my Negatives.

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@kimspr3

You have a right to vent. Holding it in is not healthy. You are right, no wants to hear it. Today was a bad day, I text my cousin I guess needed to talk because I wanted to end this. My husband gets me going, sarcasm I wanted to scream and I did. His response, "something is wrong with you!" I felt, how to get away help me. I thought of "that" so I needed to calm down or what ever. Never responded. People don't want to hear it. Children, not all but run away. I learned my lesson. I go to no one! Hope your feeling a little better or better than a little.

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i dont mind ever being here for you to listen and be a shoulder to cry on of if you just need to vent and u can even use rough language… Dr wayne Dyer says " always choose life" try to rise above any bad comments your husband makes some men just dont know how to deal with situations like yours so just rise above it dont let it bring you down. message me and let it out !!! you have a lot of support here

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Bravo for your honesty and bravo for the love you are giving. Now—take a deep breath and say to yourself: " Job well done!"

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@kimspr3

Hi Becky, When people care I appreciate it so much thank you so much. People caring is so rare It always makes me cry. I see a Psychologist only when my husband can bring me. About once a month I can't sit long, stand, long, bending I use one of the handicap sticks for laundry etc. Hard to shower, bending, twisting so sponge baths. I would like a support group, clergy, it's getting there. I live in the country everything is spread out. I called clergy, there was no one close to pick me up. I never thought of calling Assistance for the Disabled. I promise I will do that after the holiday. I will look into what you suggested. I"m here also for others. Will you be going to a BBQ? Hope you, are feeling good today?

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I care, and I know the others who read your message care. That’s the amazing thing about this group. You are not alone, and you are understood and loved by people you don’t know.

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@kimspr3

Hi Becky, When people care I appreciate it so much thank you so much. People caring is so rare It always makes me cry. I see a Psychologist only when my husband can bring me. About once a month I can't sit long, stand, long, bending I use one of the handicap sticks for laundry etc. Hard to shower, bending, twisting so sponge baths. I would like a support group, clergy, it's getting there. I live in the country everything is spread out. I called clergy, there was no one close to pick me up. I never thought of calling Assistance for the Disabled. I promise I will do that after the holiday. I will look into what you suggested. I"m here also for others. Will you be going to a BBQ? Hope you, are feeling good today?

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@kimspr3 Kim, start writing down your thoughts, on a computer if you have one, or by hand. Or speak and record your thoughts. I know from experience that saying what you are feeling out loud, let's another part of your brain listen. I like to longhand write, and later will look at how I wrote, not just what. Pretty enlightening, let me tell you! Some people just cannot get a clue how to treat a loved one in chronic pain. Perhaps have a friend explain it to him, instead of you. We care here.
Ginger

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@kimspr3

You have a right to vent. Holding it in is not healthy. You are right, no wants to hear it. Today was a bad day, I text my cousin I guess needed to talk because I wanted to end this. My husband gets me going, sarcasm I wanted to scream and I did. His response, "something is wrong with you!" I felt, how to get away help me. I thought of "that" so I needed to calm down or what ever. Never responded. People don't want to hear it. Children, not all but run away. I learned my lesson. I go to no one! Hope your feeling a little better or better than a little.

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I cry.
I sob.
I breathe.
I collect.
I decide to focus on one thing I can do for him, and some one thing for myself. It’s sometimes (but not always) the same thing.

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kimspr3, you might try getting a small shower chair and a handheld shower head. That worked for my husband when he was unable to stand anymore.

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