I've been browsing topics here for a few days. You are all heroes. I am thankful that there is a place where I can come and see that I am not the only one struggling with trying to care for a loved one with dignity no matter what disgusting things happen.
I am jointly assisting my mother in caring for my grandmother who is 89. She is in home hospice for never-"end"ing stage heart disease, stroke, and dementia. I've been living and caring for her now for 20 months and I am tired.
I noticed something today that inspired me to write and thank the "stress relief and inspiration" crew for their candid descriptions of everyday life and cheer you on with the challenges you face.
I keep up with my children, some friends and family in other social media like FB. Since moving in to help care for Grandma, I've taken my life underground. I have found that I can't commit my thoughts and feelings to paper or status without chipping away at my Grandmother's dignity. If I do mention in passing that I've had a hard day, it isn't unusual for someone to pipe up and tell me how happy I should be that Gran is still alive and how wonderful she is. I'm happy already. She is wonderful. (She is really wonderful telling me the same story over and over again while picking poop out from under her finger nails. *sigh* That reminds me that it is time for ME to trim her nails again so she doesn't pick her nose with her fecal finger and get ANOTHER nosebleed). I'd get really friggin happy if the nieces who comment that they are so happy would volunteer to come over and stand in for one of us for just one day instead of just paying me lip service about how happy I should be that she is alive.
My Grandmother is respected and well loved in the community. Out of respect for her and to honor her privacy, I don't feel like I can share my challenges with anyone who knows us. Everyone shares their status. "I got a friggin flat tire today", "my child goes through so many diapers that…", "You'll never believe what 'insert name of child here' did today..", "I'm pulling my last hair out with 'insert'. All of this is socially acceptable conversation and most people don't hesitate to comment on with words of encouragement or commiseration. If I was to tell anyone (outside of my own mother or husband) what Grandma did today or how I felt about something I had to do, the comment would be viewed as nasty, depressing, or over-sharing. No one enjoys a downer and until they become caregivers themselves, they won't be able to understand why caregivers need to vent.
My child once played with poop making a horrible mess in the bathroom. It was awful and I didn't like that I had to clean up the mess. I've told that story many times to the amusement of many other mothers. My daughter learned not to do that again, because she could. Fast forward to the present….my Grandmother won't wipe her own rear end with more than ONE square of toilet paper. Left alone in the bathroom she will end up covered in her own feces. She can't be left alone anymore in the bathroom because she will do bad things. Things she wouldn't do if it wasn't for the dementia…things that no one wants me to say out-loud. Grandmother's capacity will not improve, she will only further decline. No one wants to hear that story.
I love my Grandmother, but I don't love the fact that my mother and I have to schedule an appointment with each other just to go outside for air. We have to monitor Grandma 24-7 on a baby monitor that feels like a shackle. My mother and I are becoming strangers because when one of us is "on duty" the other one wants to be as far from Grandma as possible for sanity. In 2 years I've been out with my mother alone for fun one time. I'd rather lay in front of a speeding bus than change her adult diaper one more time, but I know I have to.
There is more to my story but I digress. I've felt isolated for so long. There hasn't been an area where I could read or share with others when I'm tired. Care-giving is such a quiet and unsung occupation. Family care-giving is un-paid, we don't contribute to our own retirement, and frequently give up our own healthcare in exchange for stress, fatigue, and postponement of our own enjoyment.
Thank you for allowing me to read your stories and snippets. I feel for all of you and your situations. I know I'm not alone in feeling frustration. I feel stronger knowing that there are others that understand what I cannot share in a media other than this one. I thank you for listening. Now Grandma is calling me, God help me she has to poop again.