In my experience of sharing my caregiving experiences with others, I have found that they don’t understand unless they have been a dementia caregiver themselves. One time someone kept asking when I was able to hang out and go to a movie or something and they said, “Can’t you see if your schedule can be adjusted so you can take a day off?” Dementia does not take a day off, therefore I cannot take day off. I rarely get the opportunity to do anything for myself or do anything I want to do. My life is on hold and some people just don’t understand how it is. However, I am very grateful to have a few close friends who have been dementia caregivers for a loved one, so they can relate and they understand.
Does anyone else feel this way? Like you don’t get it unless you know?
UNTIL YOU LIVE IT by Diana Ballinger
Until you live it
You cannot know
The breaking of my heart
I am trying not to show
Until you live it
Don’t judge or give your take
For I am barely holding it together
But doing it for his sake
Until you live it
Just quietly listen or hold my hand
For the hourglass that was our life
Is quickly running out of sand
Until you live it
Watch him change with everyday
Trying to hold onto something
Forgetting how to pray
Until you live it
Which I hope you never do
Know I do the best I can
And face each day anew
Why not stop and get some donuts and coffee and come over here and we can chat.
You call a friend and say..."I could use some company tomorrow I will make lunch would you like to stop at the Library and pick up a movie, I trust you to pick a good one"
You are right people don't know exactly what it is like until they are caring for someone. Probably much the same way it is with young couples when the first in the group has a baby...life changes dramatically.
Now some advice for you. You need to have a caregiver come in at least 1 day a week so you can get out. (if not 1 day a week 2 times a month would be better than none) You can meet with friends, go to a movie, go shopping, care for yourself. This is just as important as caring for your loved one. "We" can not do this all ourselves 24/7/365 we need help,we need a break, we need to ask for and accept help when it is offered.
They say stupid crap like, “You are so blessed to have your mom for this long. Love her while she is with you.” It’s not about love. Caregiving is a burden so yes you make a very valid point!
My caregiving days are over and I feel so much relief. I just couldn’t do anymore. 15 years was long enough!
Take care.
only....my Dad is big enough to make real trouble, and tear the house apart. Elderly dementia victims are far worse than the terrible twos.
my friends, ex-coworkers and even family members don’t understand it at all, they think just hire a pt caregiver once in a while and just go out...for me it doesn’t work that way, if that person does not pay close attention for a second my mom can choke or fall and get injured making the whole situation 10x worse, so I don’t take a chance. I put my career on hold as well, and I know the consequences of that too, it’s hurting my chances of finding a job in the future bc of a work gap on my resume plus I’m not being paid now do not contributing to taxes, SS, etc.
You are a very special Granddaughter, going to college too and taking care of your Grandma is an amazing ability...you will be rewarding in your future. Good luck!
Yes it’s very true what you said about how everything you do revolves around the caregiving. For me, and probably you too, even something as simple as going to the grocery store. Sometimes grandma gets mad and doesn’t want to go in and I have to convince her it’s okay, tell her I need help shopping, and of course offer to buy her a snack. The snack offer usually works 😂