1. < Caregivers

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.

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kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @kimspr3 "Yes I do feel so much anger. Medical profession will not address it so it's called..." + (show)
@kimspr3

Yes I do feel so much anger. Medical profession will not address it so it's called failed back surgery. I have TRIED to called Senator's, Congressmen but will not speak with me because I do not live in their state!!! People are suffering and no one cares. You are all making me cry because you care and ask the right questions. I have a wonderful P.M. Dr. He was not well versed with AA but he learned and researched. I have a pain Pump it works but I am getting a bit worse so when I see him we will talk about whats next as far as medication in the pump. the pump is working 24 hrs a day but I have a remote control use it but only four 7 times a day. I have used Yelp to share my experience naming the 1st surgeon 2008. I can't deal with it much. Husband works, alone a lot of the time. I had hopes of traveling, having fun so much more. White Coats took it from me. I wish I could pass a law, Patients MUST be told of the dangerous side effects in writing. To do that a bill must be past. Medical Community is very strong. I told someone I want to die but Iam also scared. I will be leaving my body to sicence so maybe it will help others. I wish I could Volunteer in a hospital or absurd children. I can't drive, sit, stand, bend for long. Thank you, Becky

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I can't believe I wrote absurd children. I meant abused!! I love kids!

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3 replies
sallysue | @sallysue | Jul 4, 2019
In reply to @kimspr3 "I can't believe I wrote absurd children. I meant abused!! I love kids!" + (show)
@kimspr3

I can't believe I wrote absurd children. I meant abused!! I love kids!

Jump to this post

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

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1 reply
vickys | @vickys | Jul 4, 2019
In reply to @kimspr3 "I can't believe I wrote absurd children. I meant abused!! I love kids!" + (show)
@kimspr3

I can't believe I wrote absurd children. I meant abused!! I love kids!

Jump to this post

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

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 4, 2019
In reply to @kimspr3 "Yes I do feel so much anger. Medical profession will not address it so it's called..." + (show)
@kimspr3

Yes I do feel so much anger. Medical profession will not address it so it's called failed back surgery. I have TRIED to called Senator's, Congressmen but will not speak with me because I do not live in their state!!! People are suffering and no one cares. You are all making me cry because you care and ask the right questions. I have a wonderful P.M. Dr. He was not well versed with AA but he learned and researched. I have a pain Pump it works but I am getting a bit worse so when I see him we will talk about whats next as far as medication in the pump. the pump is working 24 hrs a day but I have a remote control use it but only four 7 times a day. I have used Yelp to share my experience naming the 1st surgeon 2008. I can't deal with it much. Husband works, alone a lot of the time. I had hopes of traveling, having fun so much more. White Coats took it from me. I wish I could pass a law, Patients MUST be told of the dangerous side effects in writing. To do that a bill must be past. Medical Community is very strong. I told someone I want to die but Iam also scared. I will be leaving my body to sicence so maybe it will help others. I wish I could Volunteer in a hospital or absurd children. I can't drive, sit, stand, bend for long. Thank you, Becky

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@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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1 reply
debiobrien | @debiobrien | Jul 4, 2019
In reply to @kimspr3 "I can't believe I wrote absurd children. I meant abused!! I love kids!" + (show)
@kimspr3

I can't believe I wrote absurd children. I meant abused!! I love kids!

Jump to this post

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

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2019
In reply to @kimspr3 "I'msorry, I don't know how to put Rick into the discussion?" + (show)
@kimspr3

I'msorry, I don't know how to put Rick into the discussion?

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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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2 replies
kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @becsbuddy "@kimspr3 I can understand your anger, but it doesn’t help you. Is there someone you can..." + (show)
@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

Jump to this post

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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2 replies
kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @debiobrien "LOL when i saw it i figured you meant abused lol great minds think alike" + (show)
@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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kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @colleenyoung "Hi Kim, I brought @rckj into the discussion by mentioning her @username. You don't have to..." + (show)
@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.

Jump to this post

Thats OK

REPLY
kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @vickys "You gave many of us a much needed chuckle! We understood!" + (show)
@vickys

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

Jump to this post

Happy I could help, belly laugh!

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