I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
melmo53 - Something you said about being the oldest sibling struck home. I never realized that when I ask my siblings to help with THEIR mother, that it feels like I am asking them to help me. That's my 'oldest sibling training/guilt' and not their fault really. Granted they don't volunteer much but neither I nor my mother often ask them to help. I'm changing that as of now - guilt free. Thanks.
What frosts my fanny is all of the family members or "friends" who make their occasional drop in visits, act like they are all filled with concern, and all the while you can almost feel the urgency of wanting to get out of the door. You hear the remarks about "you need some help"...and there they sit, on their butt, and know you will not see them again, unless a wave of guilt hits them. I don't know if others have experienced this, but I swear, just about all of these bozos sit here and put on a half decent act of caring, then you find out they went promptly and discussed everything going on with anyone who would listen...the standard gossip mongers...It is kind of humorous to me how they drift in with their fancy outfits, high heels, pedicures, newly fixed hair and look down their noses at me for having on "loungewear type clothing"....no makeup ....and I get to sit there and listen to all their baloney about their vacations, their fun outings....it may sound hateful, but I don't mind the caregiving.......I have had people tell me they would visit but can't bear to see my Mama like she is now...those are the ones who are the most infuriating and pathetic to me...For these are the ones for whom my Mama was there to raise, feed, take to appointments because their own family would not...yet they "can't bear to see it"....Right now my Mama is my life...I will deal with what comes later later....But I can assure you there are a WHOLE BUNCH of folks who won't need to wonder what has happened to me.
And yes definitely loss of freedom!
Yesterday, a neighbor told me her mother had been given six months to live. And I almost congratulated her! I quickly corrected but she knows me well enough to read my emotions. I was mortified. Fortunately, she laughed and told me to hang in there, my sentence would be up soon, too.
Everyday the bars are getting more and more confining, while I lose touch with the real world. Humanity moves on without me, and I am losing my ability to compassionately exist in it.
I know that I should let that comment go, but it really irritated me! I still have 3 of my kids living here, a husband, and her to take care of, plus I work full time. Life is never easy. Why can't I just take that comment with a grain of salt and not stew over it?
The constant reminder of my own mortality, and worse, that this could be me in 20 years. The terrible fear that I might be forgetful, stubborn, dirty, deaf and so annoying that my children will dread being around me, and will feel about me like I feel about my mother!
But my main complaint is: knowing where to start if you've decided that your parent needs to go into a home. I've been on this path for 4 months and normally love to research, but now I hate it, b/c it's all a maze. I could now write and book and, if I had any energy left over, I would. I'm stuck: Mom wants her own place; we're in the process of getting a valid diagnosis (i.e., dementia and related diagnoses) and I've drawn up a POA to allow me to discuss her medical needs, applications for Medicaid, etc., but NO ONE can tell me which facilities in my area accept Medicaid. Mom has NO assets (unless you count her 15-yr-old car). She gets approx $900 in SS each month and that's IT! I don't know about other states, but just getting a list of facilities that are not strictly PRIVATE PAY is next to impossible. You're already in a crazy-making, exhausted, frustrated and confused state of mind and you assume SOMEONE will guide you, but you're passed from one Agency to another. Our saving grace has been the local Alzheimer's Assn and a neurologist who knows how the system works.
As far as Mom's "IT'S ALL ABOUT ME!" mindset, join the crowd. I URGE all of you to find other caregivers on this site who've posted about their parent (usually moms!) who fit the Narcissistic Personality Disorder diagnosis. It explains a lot and you learn to just lower your expectations, nod and say "uh-huh" and "OK" and move on to the next subject. Blessings to you all!