Warriorism of Caregiving

Wilted Daughter

Attached are poems to help those who need them...

Kay82

This really hit home. I don't think I will ever be able to explain how challenging this is, what I gave up and the ocean of emotions I have been through. My relationships with my siblings will never be the same.

Wilted Daughter

Kay82,

I do not know your personal situation (can only image based on mine). What I have experienced is that caregivers (me) are not completely accepted/appreciated, do the hands on blunt work under advisement of the multiple least involved, while being isolation.

Although we can't get our lives back (the way we were before caregiving), we must evolve during this caregiving journey by continual learning so we can exit as a better person. For 2+ years all I wanted was to go back to my life. Now I realize that both me and the place I left have changed. I don't know what the future holds for me after caregiving but I'm trying to prepare for better days...remembering nothing lasts for forever. 

Here's something to take on your journey...

"Fleeting Feelings:

I'm tired,...shot,...got nothing',...zippo, Feel like I'm dragging a big ole hippo. I want to do all kinds of things, But I've just go no springs. Ain't it terribly awful...to feel like that? Feel like spit...that's just been spat. But I'm sure there will be many better days to come, When I'll feel like the cake instead of the crumb. Hope dictates...the tide will turn, I'll be the bird, ...not the worm. Wisdom dictates I'm bound to learn, Feel the faith baby!...Stay firm! - Robert A. Dufresne"

www.poetrysoup.com/poem/fleeting_feelings_270558

*You are not alone. 

CanyonGal

It is a difficult "job" and financially it has cost me big bucks in travel, loss of time, unable to seek employment because I am running back and forth between states to deal with a crisis. 

My siblings play the armchair quarterback and have no clue about what I deal with. They don't want to help at all except to throw unreasonable suggestions. They live the closest to my mom, but maybe visit if she is in the hospital (they don't have to do anything but make an appearance there) or visit once in 6 months or more. 

mommyandme (m&m)

Wilted Daughter said… For 2+ years all I wanted was to go back to my life. Now I realize that both me and the place I left have changed. I don't know what the future holds for me after caregiving but I'm trying to prepare for better days...remembering nothing lasts for forever. 

Exactly! 

Wilted Daughter

CanyonGal,

I heard that there may be numerous family members, near or far, but only one or two will carry the caregiving load. I found it to be factual. Even though I am the only child with one child, who reasonably helps, my mother had 10 siblings, 4 remaining. 

Three of the 4 talk, talk, talk with promises/suggestions/questions (trouble making). They want to visit, but only when I'm around and when she went into hospital/SNF rehab they called around town to find out where she was but did not attempt to visit during or after. 

Understandably, not everyone is equipped to provide caregiving services but I wonder if one mother and/or one father provided upbringing/care of multiple children (e.g. ratios: 1:4 or 2:4) then why can't the said 4 split the workload for caregiving across the lines of ability/location.

Anyway here's another poem that I found on another caregiver site.

"Sunrise to Sunset

I take care of myself, I live on my own, Except when I can't, So be by the phone

I eat my meals, I sleep in my bed, Just do my shopping & keep me fed, Do my shopping, cleaning, gardening, bills, take me out when I'm bored, stay here when I'm ill

I just need a little help, now & then From sunrise to sunset then sunrise again" -Unknown

CanyonGal

I have been the main caregiver for 3 1/2 years. This “job” of handling finances and health matters is draining. I have no support except my husband. It is sometimes difficult to choose he best option in medical care, will this help mom or push the dementia further? Mom’s hospice team has said any surgery or illness can nudge the brain further down the vascular  dementia staircase. 

I know that there will be an ending of this responsibility of having to take care of a parent, and the adjustment of not having to make decisions. I know I will miss hearing my mom’s voice and presence, but she is already fading away mentally, and I grieve for the loss.

I feel bad that could not take care of her at home and she had to be placed in a facility, but the battles and arguments over her medication, bathing, changing clothes, and handling delusions was making me go down the tubes. I am sorry the relationship between family members have disintegrated into pointing fingers and blaming instead of supporting each other.

This mental illness called dementia is hard on caregivers too. 

Rant ended. 

Kay82

I know my life will be so radically different after my mother passes. As others have mentioned the PWD is not at all who they used to be, that person is gone, never coming back.  This is the grief I feel I am walking thru now and to be so alone in this grief hurts even more. 

My husband died 4 months after my 50th birthday 11 years ago. I know he would be so understanding b/c he really liked my parents. 

I know I have my brother & his wife to talk to and my other single brother. I am just having a heck of a time wrapping my head around all that has come up regarding my sister, her lack of care &/or concern. 

I am looking to the future when I get my life back so I can finish getting my house ready for sale.  I will be leaving the area and will not leave a forwarding address.  I will stay in contact with my brothers.

Wilted Daughter

In reading posts on caregivers forum, it is helpful for me to learn that we as caregivers experience similar if not the exact same tribulations. 

Place or not to place, where to place/when to place/how to place, guilty about the very thought of placement, daily grieving of the deteriorating LIFE of someone with AD/ADRD, perhaps taking care of someone who you suspect would not take care of you if the shoe was on the other foot, listening and weeding through the outside noises/inner conflicts, trying daily to muster enough strength to make it through (day, week, month...), wearing too many hats, interacting with people because of caregiving duties that you would rather not know...

Yeah...I too know when it's all said and done that I can't stay here (sell, move, don't want to come back even to visit the town (maybe the state), change number, and change identity LOL

But on the up side...it's ok.

toolbeltexpert

Nice.

 It's OK today

And see the new sunrise 

It's OK today

Even if I cry

Because O' Lord

You hear me

I know that I won't die

It's OK if I can't fix

Because you know I've tried

Wilted Daughter

Thank you Toolbeltexpert - Short and memorable