It Doesn't Have To Be This Hard?

Wilted Daughter

When speaking/thinking about "it doesn't have to be this hard...", I believe it's perspectives over ability. My mother has made this statement in her current state. She is speaking from 2+ decades of memories when her role for family/friend was different from my current role (caring for her).  She never lived with the person whom she provided care, didn't change her lifestyle to care for them, etc.

Caregiving is multidimensional in factors of time, family (those who help/those who don't), who the care is providing to and who is providing the care, healthcare (knowledge/experience of doctors, nurses, aides, etc.), available resources (assets, community support, programs, etc.), location (state, rural, city, town, etc.), and individual character/personality. 

Caregiving is an occupation/profession and should be treated as such, but instead it seems to be viewed as family affairs/responsibility and that is what can make it hard. People are good at different things (what's easy for some may be difficult for others). 

 IDK but perhaps the meaning of "it doesn't have to be this hard" is suggesting a change of perspective.  All I know is it's been hard for me and I look for ways to make it easier. 

mommyandme (m&m)

Again, Wilted Daughter, you’re spot on. 

It’s very hard and so many caregivers enter into their new job unprepared. “It can’t be that hard”… oh but it is. So many considerations about everything! So many adjustments to be made. All the while our LO is often oblivious to the trials and tasks we deal with, for them and ourselves.  

The work you’re doing is painstaking. You’re a thoughtful and valuable caregiver. Your LO is so blessed to have you. Thank you for sharing your life with us! 

Kay82

I think & feel what makes this caregiver position 'hard' is the unpredictably of the person we care for and the 'others' - ie: siblings, PWD's other family members, neighbors and medical personnel.

I am thankful that my mother has a good understanding doctor who is easy to talk to.  Unfortunately caregiver resources in the county we live in are scarse and other counties' resources sometimes don't service other counties.

As always I am thankful for this message board and all of you. 

Ci2Ci

Not only is the caregiving itself hard (physically, emotionally, mentally, financially draining), but it's made even harder by the potential consequences of it. I just posted about the liability of being a caregiver, which raises the stakes so much. Ref: https://www.alzconnected.org/discussion.aspx?tid=2147563692&g=posts&t=2147563692

The other thing that has made it so much harder for me is the lack of support from professionals whose job it is to support the PWD. In my case, every single one to date (from doctors to facilities to agencies) has failed us. 

Regina312

It is hard.  Everything about this disease is difficult and challenging.  I was my Mom's caregiver.  I had some friends and family who helped me.  I was blessed to be able to keep Mom home with me until she passed, but was getting prepared for a professional caregiver if needed.  What works one day does not necessarily work the next.  What seems to be a good day suddenly turns to a bad one.  In the mid-stages, my Mom was able to walk around and function with limited help.  She liked to sit on the porch. One afternoon I found my Mom holding a small tissue on her arm with blood pouring out.  She knew she had a cut and understood the concept of stopping the bleeding.  But she did not understand how bad it actually was.  She somehow got her arm caught on the door and cut her arm.  She was not in pain - or if she was, she didn't know it - and never reached out to me.  I went outside to bring her a snack and it made me so sad to see her with this tiny tissue wiping away the blood.  I cleaned and wrapped it and brought her to the ER.  She needed several stitches and a tetanus shot.  We all know how quickly things happen.  With the dementia patient, like a child, you have to be their eyes and ears and their voice.  As a caregiver of our loved ones, we always have to be ready and alert.  Their actions are unpredictable.  So YES, it is hard, and it is ok to feel that way.   All the best.