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what frustrates you most?
only_girl
Posted: Monday, July 29, 2019 12:08 AM
Joined: 5/5/2019
Posts: 4


With all of the frustrations dementia and caring for a PWD brings, what part frustrates you the most?
For me, it has to be the inability to sleep through the night. I don't think I can even remember the last time my dad stayed in bed for more than a couple of hours (and going that long is a rarity). He also gets out of bed (or tries to) in his sleep, so we have the added bonus of not knowing if we'll get sleeping or waking Dad when we go to check on him (we have motion sensors in his bedroom and my brothers & I take turns monitoring). My dream is having him sleep for a solid few hours, maybe a bathroom break, then back to bed, but I know that is about as likely as me winning the lottery. 

CVGdaughter
Posted: Monday, July 29, 2019 2:22 AM
Joined: 6/7/2019
Posts: 6


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.

 


Abuela
Posted: Monday, July 29, 2019 6:08 AM
Joined: 6/24/2012
Posts: 346


Mom lives in a MC unit so what frustrates me most is visiting her.  If I visit, it triggers her to want to leave.   When I tell her that we can't leave 'today' she persists.  The visit becomes all about leaving.  And when I leave she makes a scene about 'walking me to the car'.  Aids have to distract her and sometimes cannot.  It is torture for me because it makes me feel as if she is so unhappy there.  I leave with tremendous guilt and feel that I did the wrong thing by visiting her.  But the reality is that she is doing well and the unit is well suited to her needs right now.  I know this because her caregiver is there everyday and reports that she is doing well there.
MinutebyMinute
Posted: Monday, July 29, 2019 8:50 AM
Joined: 6/11/2019
Posts: 145


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.


GemsWinner12
Posted: Tuesday, July 30, 2019 12:22 PM
Joined: 7/17/2017
Posts: 334


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.  


Dot9000
Posted: Tuesday, July 30, 2019 1:00 PM
Joined: 6/12/2019
Posts: 40


GemsWinner12 wrote:

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. 

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.   



NoSiblings
Posted: Tuesday, July 30, 2019 1:08 PM
Joined: 9/3/2016
Posts: 192


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.


leahm
Posted: Tuesday, July 30, 2019 1:23 PM
Joined: 2/15/2017
Posts: 32


I connect with your feelings.  My mom is still able to be in assisted living (next step memory care) and it’s always deflating when she goes on about “getting out of here and getting her own place set up”.  I know that you should redirect Redirect REDIRECT but there are instances when it just doesn’t go that way.  It’s sad and it’s frustrating.  I find some cold comfort knowing she is in a safe(r) environment and it’s the best option.
Rescue mom
Posted: Tuesday, July 30, 2019 2:08 PM
Joined: 10/12/2018
Posts: 800


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.


VKB
Posted: Tuesday, July 30, 2019 6:52 PM
Joined: 12/4/2011
Posts: 3461


The hardest thing for me was changing Mom's diapers & keeping her clean.
Katy sue
Posted: Wednesday, July 31, 2019 5:25 AM
Joined: 9/24/2016
Posts: 264


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.

 


Janice.alone
Posted: Wednesday, July 31, 2019 7:55 AM
Joined: 10/12/2018
Posts: 48


The most frustrating part with my mom was her lack of balance, although she believed she was fine - - just needed to do a little "furniture walking" while in the house.    It was so difficult to watch her stumbling around like a drunk when all she had to do was put her two hands on the wheeled walker and she could get around fine.   It was so obvious to everyone, except her.   I don't know why she resisted the walker, but she just hated it and would not use it unless I was right there beside her coaxing her on.    I never knew when the next fall would happen, whether or not it would require a trip to the ER and how long this could go on before I was charged with elder abuse because of the bruising all over her body.
gubblebumm
Posted: Wednesday, July 31, 2019 10:05 AM
Joined: 7/12/2017
Posts: 1278


The idea everyone has that's it is just memory and no big deal, it adds to the stress, the unknown, the loneliness, the lack of funding, lack of adequate places and good paid care, the stupid ads showing happy content ALZ patients and their caregivers.  Oh they seem fine!!!
Mitzen
Posted: Wednesday, July 31, 2019 6:03 PM
Joined: 7/31/2019
Posts: 1


Im frustrated by the guilt I have ... for not spending more time with my mom when she was in earlier stages of ALZ, and now frustrated by how much I avoid going to the nursing home because it’s too painful to see her sitting numbly in the lobby area blankly making it thru the day that she doesn’t have feeling for or understanding of.  I’m frustrated that other people don’t understand the depth of my grief and want to dismiss it as “she’s in a good place and being taken care of” ... I want to scream “It’s my mom, her body is there but she’s gone” .... I feel frustrated for the guilt that I have about thinking it will be a relief when this is over.  I’m so sorry that any of us are dealing with losing a loved one years  before they’ve actually passed away.
strugglinginOR
Posted: Wednesday, July 31, 2019 7:15 PM
Joined: 4/28/2019
Posts: 10


Oh so many frustrations its hard to choose! I guess a top one is how frustrating it is that mom is still so incredibly manipulative, judgemental, and negatively toxic as she always has been but now is additionally slowly also more confused, and less physically able requiring more and more help.
Seasons In The Sun
Posted: Wednesday, July 31, 2019 8:56 PM
Joined: 5/21/2018
Posts: 196


  With all the things we do for our LO to me the most frustrating thing is watching my wife of 51 years slowly die a little more each day. Waiting and wondering when the end will come. SUCKS.

Bob Sacamano
Posted: Thursday, August 1, 2019 7:14 AM
Joined: 1/31/2012
Posts: 462


Life on hold. Missing out on: hanging out with friends, pursuing new relationships, going on vacations, buying tickets to something in advance, volunteering; in other words, freedom.
abc123
Posted: Friday, August 2, 2019 10:05 PM
Joined: 6/12/2016
Posts: 407


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.  


Army_Vet60
Posted: Saturday, August 3, 2019 9:38 PM
Joined: 6/21/2019
Posts: 334


This is me as well. There's almost nothing left of my wife. The disease rushed through stages five and six last year. Now that she's in end stage, it's as if the disease has decided to sit back and enjoy its handiwork as long as possible. My wife has told me several times this past month she doesn't care any more. The other night she looked at me and said she wants to say goodbye.  This disease is sadistic.
 
 Seasons In The Sun wrote:
  With all the things we do for our LO to me the most frustrating thing is watching my wife of 51 years slowly die a little more each day. Waiting and wondering when the end will come. SUCKS.


Suziesb
Posted: Saturday, August 3, 2019 11:41 PM
Joined: 5/22/2018
Posts: 171


Bob Sacamano wrote:
Life on hold. Missing out on: hanging out with friends, going on vacations, buying tickets to something in advance, volunteering; in other words, freedom.

I have to agree with Bob...this is what I miss right now the most, my freedom.  Not being able to pick up and just go somewhere, because I can't leave my mom alone for a minute. I was planning a pretend vacation tonight, wishing I could book a flight somewhere and just go! 
Mom might live for several more years. I feel so guilty when I think this thought.


syrac818
Posted: Sunday, August 4, 2019 6:11 PM
Joined: 5/1/2013
Posts: 146


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. 


SelEtPoivre
Posted: Sunday, August 4, 2019 9:13 PM
Joined: 3/8/2018
Posts: 760


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>


Echo-fading
Posted: Sunday, August 4, 2019 9:22 PM
Joined: 6/2/2019
Posts: 4


I miss the family being able to talk about something other than our LO. I can't remember the last time we were able to have dinner or watch a football game together and just talk about everyday things. The weather, sports, upcoming events, anything. I wish we could talk about simple things like that
LicketyGlitz
Posted: Sunday, August 4, 2019 9:27 PM
Joined: 2/3/2018
Posts: 402


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.


EN85
Posted: Sunday, August 11, 2019 7:14 AM
Joined: 1/10/2019
Posts: 70


I have to say that I feel like some of these responses were pages torn from my own book. I will add that what has me the most frustrated is being rushed to do everything. I feel  rushed to use the bathroom, take a shower, wash dishes like just everything. If I'm not in my mom's eyesight she's constantly asking are you finished yet. Thus goes on from the moment she sets eyes on me in the morning. If she asks me to take her to my aunt's house for a visit, if I walk outside she calls me back to back to back. I'm also mostly frustrated by lack of privacy. I can't have a phone conversation without mom interrupting.  I dont even hold personal conversations anymore but business calls are so hard to have. I guess what frustrates me the most is being frustrated at all. She's sick and I should just be able to roll with the punches and I guess I just haven't got there yet.
yogi60
Posted: Sunday, August 11, 2019 8:19 AM
Joined: 2/22/2017
Posts: 78


DH, young onset bvFTD. Living with this unpredictable, weird, self-centered man child. Walking on eggshells to keep him happy and safe.
Dejan
Posted: Sunday, August 11, 2019 8:57 AM
Joined: 12/2/2018
Posts: 15


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. 


tcrosse
Posted: Sunday, August 11, 2019 12:30 PM
Joined: 6/27/2019
Posts: 5


Only that every little thing becomes difficult, if not impossible to do.
Doityourselfer
Posted: Sunday, August 11, 2019 2:41 PM
Joined: 9/5/2017
Posts: 291


What frustrates me the most is not being able to do what I want to do to enjoy myself, lack of freedom.
Rescue mom
Posted: Sunday, August 11, 2019 4:02 PM
Joined: 10/12/2018
Posts: 800


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.


sunnydove
Posted: Tuesday, August 13, 2019 12:08 AM
Joined: 3/9/2018
Posts: 6


Dejan - 

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. 


Dot9000
Posted: Tuesday, August 13, 2019 6:32 AM
Joined: 6/12/2019
Posts: 40


sunnydove wrote:

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.



NCSylvia
Posted: Tuesday, August 13, 2019 7:26 AM
Joined: 1/18/2017
Posts: 26


People who feel they have to one-up me and shut me down because their experience with AD is/was so much worse than mine (I am NOT referring to anyone on this board), and people who say 'At least you still have your mom.' No amount of explaining makes them understand that I don't have my mom anymore, that Alzheimer's has made us strangers to each other and to ourselves.
River Styx
Posted: Tuesday, August 13, 2019 8:38 AM
Joined: 1/30/2019
Posts: 30


For me, the biggest challenge is not having support.  It's just me 24/7.  Like you, I rarely get more than two hours of sleep in a row, but the part that kills me is the loss of bladder and bowel control.  I dread waking up knowing that there is going to be a disgusting mess somewhere that I have to clean up.  I'll have to get her in the bathtub and wash her off, clean floors, furniture and do another four or five loads of very soiled towels and clothes.  I used to think having a keen sense of smell was a blessing, but now it's not so great.
River Styx
Posted: Tuesday, August 13, 2019 8:43 AM
Joined: 1/30/2019
Posts: 30


Freedom.  I miss that too.  I miss simple things that I used to take for granted like taking a shower whenever I wanted, going to bed when I am tired, and being able to leave the house without days of pre-planning.
 
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