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what frustrates you most?
For me, right now, it is the battle to take a shower and her fear of the shower. It’s always a 40ish minute discussion to get her into the shower. Then I have to play music to keep her occupied singing in the shower or she will scream things like I am afraid or get me out of here and then shake and cry. The other day the wireless shower speaker went dead midshower and it was not pretty. We only do showers 3 times a week now unless there’s a bathroom accident.
The uncertainty of it all. Bad as bad is, I can manage it ... if I'm ready. It's when everything is all good ... and then 30 seconds later, it's not. It's the daily fights to go to daycare. When yesterday (Sunday) she gets up, we have breakfast and I go check on her and say Whatcha doing and she's laying out clothes. "Getting ready to go to class," just as docile as you please. Won't get this on Thursday when she actually IS supposed to go!!!!
It's all so unpredictable anymore. You can't plan or prepare. That's hurting us both in many ways. I hate it.
Since my Mom passed away about a year ago, in retrospect, I would say the most frustrating thing of all was that very few people could understand how very stressful it was for me to manage My Mom's life all alone, and have a front row seat to all the horrors of Alzheimer's.
Even though she lived in a good memory care facility, I was emotionally a complete wreck and felt that I tried to reach out to others for condolence and support, and got very little throughout the entire process. Alone, I sorted through her hoard, placed her in a good facility, took care of all the finances and visited as often as I could. Near the end it was every day. I somehow held it all together most of the time, and probably seemed competent for the most part, but I'm only now starting to get my own life back. I can finally see sunlight on most days.
My brother and I are just starting our journey with Mom - she is stage 4. Our aunts and Mom's friends act like we are mean to her or doing things we don't need to be doing (currently trying to get her to stop driving before she gets lost) - all thanks to Mom telling them there's nothing wrong with her, she was never diagnosed and why are we doing this. I've recently taken to contacting one person/relative at a time and explaining the whole thing, even though Mom refuses she's ill and at the same time asks that no one be told she's ill. So far, the people I've told are cautiously receptive (Mom can still act 'normal' to others), but there's a long list to go through and she's calling them and bad-mouthing my bro and I. I know it's part of the story (thanks to reading all of the posts here), but it's so frustrating being made out as the bad guy! I agree that people just don't understand.
What has frustrated me the most throughout this journey has been the inability to know what lies ahead and how to plan. I'm a planner by nature. I get that from my mom. And to not have any idea of how long this might last, what is coming next, how soon the next thing may come, how to best manage financial affairs so as to stretch the money for her care because I don't know how long the money is going to have to last, etc. has been the most frustrating thing.
The saddest, most heartbreaking thing of course has to been to see my mother slowly disappear before my eyes and to be helpless to change it.
Hard to separate what’s frustrating, what’s sad, what’s missed...but I was so frustrated by people who told me “he looks good, he can’t have AD,”. Or, “he just said hello, how can he have AD” or “he smiled and nodded when we spoke, he surely can’t be that bad.” Etc. And they would expect him to think, act and perform like a well person, when in fact he could not.
I was also often frustrated at myself, because for too long I would still think he understood things I said. He “looked like” he understood, I *wanted* him to understand. But them days are gone.
The hardest thing and the most frustrating thing I’ve ever had to do in this journey or in my life is place my husband, my best friend.
I would have to say when the PWD becomes mean and angry causing the entire family to walk on eggshells AND to have to listen to what she/he is saying.
Example. PWD has not performed a single household duty in years, not one thing in years BUT will scream and yell that she doesn’t need help with housework and will not tolerate having a stranger in her house. And so the caretaker|caretakers will live in a messy house because the person with the broken brain is calling the shots.
I really have appreciated reading this thread. This is such a depressing journey, and it was oddly comforting seeing that so many people had the same exact feelings I had. I felt like I could I have written a few of these response is myself.
Like like a few others have said it's hard for me to decipher between sad and frustrating. They can often go together.
For me, I suppose the most frustrating aspect of this disease is tremendous length of the process. As my mom sort of floats into stage 7, I realize that watching her deterioration has been the key focal point of my life for my entire 30s. Knowing that this is a disease that can last "anywhere from 4 to 20 years" is just something I cannot psychologically come to terms with. It really does put me in a very negative feedback loop in my mind. This is my mom, this person is the greatest thing that ever happened to me, and all I want for her is to be able to pass away because she would be utterly horrified to see what she has become. And that's just so frustrating. And like I said very sad at the same time.
I love you mom.
The “friends” that vanish and don’t call or contact (me or mom)...and I suspect would be boo-hooing at a funeral. We needed you NOW, not “after” when its too late.
And sorrynotsorry if its “too hard for you to see her this way” <insert gif of tiny violin>
I'm doing pretty good on most things. Two years ago I would have been shocked to be "Meh" about showering Mom while she's experiencing diarrhea, but now it seems like just another day at the office. But what cripples me every time is when she gets on the "No" kick. It'll be sometimes a few hours, sometimes a few days in a row, when I can't accomplish anything because she snarls, hollers, spits "No!" at me. I interpret it as she is being ungrateful, and think (and sometimes scream back at her) "I've changed my whole life for you, sacrificed any hopes I had of a financially secure future, destroyed my career and you can't even pick up your f'ing foot so I can put on your sock!"
Even though my head knows she is not being hateful, she's just in the grip of a dementia manifestation, it still kills me every time.
You post is a lot like what I am experiencing. My mom lives in my home. For years, I have weighed out enduring the fussing and ugliness against cleaning her room completely not just surface cleaning knowing it will become a several day fuss on her part.
I have also loss freedom to go on vacations, run errands without worry or leave the house for more than two hours. I have loss the use of my house and have given up on anything nice.
I am tired of not having a clean neat house in good repair because I am afraid of mom's reactions to having anything clean.
Forget repairing anything because mom is a messy hoarder that I do not want anyone to see it and mom does not either because she is aware of the mess she has made.
Mom will not throw away anything even if it is not useful, old clothes, et cetera. I have to be careful about what I get rid of because she always notice if it is gone, only a very little at a time, like throwing away grains of sand when there are mountains of junk.
I worked hard all my life (and had a very successful career) so I could be independent and be able to have fun with DH as work wound down
So now here I am, trapped by DHs Alzheimer’s. At least he seems happy as a clam. If he has any idea that he requires babysitting 24/7, he hides it very well. I guess I can still dream about running away..
All that work to be independent, and here I am, trapped as effectively as if he tied me down.
My mom was borderline hoarder and had a house FULL of stuff too. Every crevice, even the basement ceiling rafters, is packed with stuff. Mostly just trash at this point, but a few interesting items. When I first moved back and I was trying to make the house safer for her and my father (who has since passed) and in a more functional condition it was a huge bone of contention for her. She constantly accused me of getting rid of stuff (we'd often find it in the next room or sometimes it was something she never owned, at least in my lifetime, like her yellow boots with the fur) or if I asked if we could donate/get ride of something I was asking for trouble. But now she keeps saying things like, "people keep putting all this junk and trash in the garage. Who would do such a thing? None of it is mine." So I just say, "joke's on them! Let's take it all to the dump!" And we do - pack the car and take it all away, one load at a time. One of the few perks of this awful disease.
My mom was borderline hoarder and had a house FULL of stuff too… trying to make the house safer for her...___________ We are also facing a house full of items (Mom used to be an antique freak), but thank heavens she actually asked us who wanted what and how to have an estate sale. We were pleasantly surprised, but then we realized it's got to be the AD talking, because our real Mom would be hanging onto the stuff forever. Bittersweet.