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.

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 2, 2019
In reply to @kimspr3 "I think it's in our DNA. I don't know if you read what I said, chosen..." + (show)
@kimspr3

I think it's in our DNA. I don't know if you read what I said, chosen one in the family. There is always that one family member that takes on the responsibility of caring for a loved one and not so loving loved one. My family did not help me with my mother including my daughter. I guess the me and I generation. Wishing you a good evening.

Jump to this post

I wish I could agree with this, @kimspr3 but I don’t see this issue as a failing of a younger generation, rather as fundamental societal changes. Unfortunately I have encountered far too many ailing individuals who have no support. The world has changed dramatically. I grew up in a town with all my extended family within blocks. In less than a generation there are now no family members in that entire state and even the extended families are spread across the country for jobs, etc. In many of the rural communities I have visited, the town itself is dying, offering no potential support structures and a small aging population.

My upper sixties BIL and MIL have both agreed if one or the other is incapacitated they have the permission to leave.

Caregiving in our country is a huge, often unacknowledged and unmet need.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 2, 2019
In reply to @kimspr3 "Hi Scott, my situation is the reverse. My husband is the caregiver. My condition is getting..." + (show)
@kimspr3

Hi Scott, my situation is the reverse. My husband is the caregiver. My condition is getting worse, I feel so bad for him. I don't like to ask for much help because he cares for the home, grounds. I need help bending, dressing, standing. Pain. I try not to look at his face to see if he is annoyed. Our families live out-of-state and friends don't call. I don't know how to make his life better? I keep telling him, I'm sorry. Almost every weekend he goes to the minor league baseball games. He needs to relax and get away. I wish he would join and speak with other Care Givers. I also have PTSD so he has 2 things to deal with. My dreams wake me screaming waking him again. Does anyone feel kinda the same? Thank You

Jump to this post

@kimspr3, I'd like to bring @rckj into this discussion about caregiving and the need to say "sorry" all the time when you are the one being cared for. She shared a bit about feeling like a burden in this post: https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=32#comment-283587

@klaken, I love your suggestion of switching "I'm sorry" to "thank you". It sounds like a few people have put that advice into practice successfully already.

REPLY
1 reply
debiobrien | @debiobrien | Jul 2, 2019
In reply to @kimspr3 "I think it's in our DNA. I don't know if you read what I said, chosen..." + (show)
@kimspr3

I think it's in our DNA. I don't know if you read what I said, chosen one in the family. There is always that one family member that takes on the responsibility of caring for a loved one and not so loving loved one. My family did not help me with my mother including my daughter. I guess the me and I generation. Wishing you a good evening.

Jump to this post

i agree it does always seem to be that one person who steps up and thanks the situation in hand.

REPLY
kimspr3 | @kimspr3 | Jul 2, 2019
In reply to @IndianaScott "Hi @kimspr3 Wonderful to get your perspective here! It is invaluable! As a caregiver I rarely..." + (show)
@IndianaScott

Hi @kimspr3 Wonderful to get your perspective here! It is invaluable! As a caregiver I rarely thought to look at my efforts through the lens of my wife's eyes. And I should have! You speak well of this situation and I envy you for that!

I hope others chime in from their perspective as patient! It is super valuable!

I know I often wondered if what I was doing was enough, good enough, or if it was appreciated. You have given me some validation on my efforts and how my wife may have viewed them

I cannot thank you enough! How are you doing these days?

Jump to this post

If I gave you peace of mind it means the world to me, I sincerely mean that. When you sleep take a deep sigh and smile. I'm not doing well. I know many do not know what Adhesive Arachnoiditis is. There is a pretty good site PPM, Practical Pain Management. Part 1 is about Arachnoiditis second is what I have Adhesive Arachnoiditis. For short, A.A. It is a disease that was given to the Patients. I try not to where my heart on my sleeve. I'm so happy about your Validation. Sleep well

REPLY
2 replies
kimspr3 | @kimspr3 | Jul 2, 2019
In reply to @IndianaScott "I wish I could agree with this, @kimspr3 but I don’t see this issue as a..." + (show)
@IndianaScott

I wish I could agree with this, @kimspr3 but I don’t see this issue as a failing of a younger generation, rather as fundamental societal changes. Unfortunately I have encountered far too many ailing individuals who have no support. The world has changed dramatically. I grew up in a town with all my extended family within blocks. In less than a generation there are now no family members in that entire state and even the extended families are spread across the country for jobs, etc. In many of the rural communities I have visited, the town itself is dying, offering no potential support structures and a small aging population.

My upper sixties BIL and MIL have both agreed if one or the other is incapacitated they have the permission to leave.

Caregiving in our country is a huge, often unacknowledged and unmet need.

Jump to this post

I tried to give my daughter growing up good values, We lived In NYC, on the trains when we saw an elderly person I told her to sit on my lap so that person could sit. Handicapped, Pregnant women. As she grew older she forgot? what I tried to teach her as my mother taught me. It's so sad. She once said to me, things are different now mom. She never know of the family get togethers. From young to old, Laughter fun. we loved each other. Oh how the world has changed. Family, all I ask to be with them again even if's it's for an hour. Fantasy. Wishing you a good evening.

REPLY
debiobrien | @debiobrien | Jul 2, 2019
In reply to @kimspr3 "If I gave you peace of mind it means the world to me, I sincerely mean..." + (show)
@kimspr3

If I gave you peace of mind it means the world to me, I sincerely mean that. When you sleep take a deep sigh and smile. I'm not doing well. I know many do not know what Adhesive Arachnoiditis is. There is a pretty good site PPM, Practical Pain Management. Part 1 is about Arachnoiditis second is what I have Adhesive Arachnoiditis. For short, A.A. It is a disease that was given to the Patients. I try not to where my heart on my sleeve. I'm so happy about your Validation. Sleep well

Jump to this post

i have never heard of this disease i will look it up to understand it and what your going thru. (((HUGS))))

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 3, 2019
In reply to @kimspr3 "If I gave you peace of mind it means the world to me, I sincerely mean..." + (show)
@kimspr3

If I gave you peace of mind it means the world to me, I sincerely mean that. When you sleep take a deep sigh and smile. I'm not doing well. I know many do not know what Adhesive Arachnoiditis is. There is a pretty good site PPM, Practical Pain Management. Part 1 is about Arachnoiditis second is what I have Adhesive Arachnoiditis. For short, A.A. It is a disease that was given to the Patients. I try not to where my heart on my sleeve. I'm so happy about your Validation. Sleep well

Jump to this post

@kimspr3 I, too, had never heard of adhesive arachnoiditis, but I sure learned from the articles in PPM. Very interesting, but very sad. Do you feel angry or bitter because AA was “given” to you? How have you dealt with it? Is your pain managed well? Becky

REPLY
1 reply
kimspr3 | @kimspr3 | Jul 3, 2019

Thank You, I just sent a reply.

REPLY
kimspr3 | @kimspr3 | Jul 3, 2019
In reply to @becsbuddy "@kimspr3 I, too, had never heard of adhesive arachnoiditis, but I sure learned from the articles..." + (show)
@becsbuddy

@kimspr3 I, too, had never heard of adhesive arachnoiditis, but I sure learned from the articles in PPM. Very interesting, but very sad. Do you feel angry or bitter because AA was “given” to you? How have you dealt with it? Is your pain managed well? Becky

Jump to this post

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

REPLY
2 replies
kimspr3 | @kimspr3 | Jul 4, 2019
In reply to @colleenyoung "@kimspr3, I'd like to bring @rckj into this discussion about caregiving and the need to say..." + (show)
@colleenyoung

@kimspr3, I'd like to bring @rckj into this discussion about caregiving and the need to say "sorry" all the time when you are the one being cared for. She shared a bit about feeling like a burden in this post: https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=32#comment-283587

@klaken, I love your suggestion of switching "I'm sorry" to "thank you". It sounds like a few people have put that advice into practice successfully already.

Jump to this post

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.