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I dropped by to see Mother two days ago on my way to visit my daughter and son-in-law for the holiday weekend. I could tell right away she was having one of those "bad" days: just standing there unable to move in her assisted living room. In a split second she fell sideways and hit the floor, breaking two fingers. So, instead of spending a wonderful weekend the kids, I spend the next 8 hours in an emergency room with mother. They put a splint on her hand and told us she'll need surgery next week.

When I got her back to assisted living, she literally couldn't get up or walk. With staff help, we wheeled her up to her room. Next day I went to see her and she's trying to remove that bandage off the splint. Told her "mother why are you unwrapping the splint?" "Because they didn't do it right" she answers.

Today my wife and I went to see her and she starts talking about moving back home. (to her house three hours away.) We suspect that she took a double round of pain meds that caused her to get unbalanced and fall. She hasn't been taking her meds properly, so we arranged with the assisted living facility to have them administer her meds.

This sent her into a rage, so she calls me tonight and tells me she's packing up and going home. "The doctors back home can do the surgery. These doctors here don't know anything", she said. She proceeds to tell me how she hates it here and she can't believe I talk to her the way I do. (I had the nerve to tell her she wasn't going back home). In her make believe world, all her friends back home are wonderful people who love her and will do anything for her. When I point out that it is me and my wife who are carrying her to doctors and sitting in emergency rooms rather that her friends back home (who are all old and dying) she just blows me off.

I could have gone to see my college alma mater win their conference baseball tournament today, but I didn't because of "mother", just like I didn't go visit my daughter because of "mother", just like I don't have time or energy to start my dream side business because of "mother", just like I can't travel like I used to because I never know when the phone is going to ring because of "mother."

I had an older special needs brother who died of cancer this past January. He had a special place in mother's heart. She loves me, but not in the special way she loved him. Today when I told her she wasn't able to go back home, she told me my brother "would have never talked to her that way." By today she had totally removed the entire wrapping off her splint. There's some kind of dementia going on. Not alzheimer's because she still knows who we all are. Yet, she told me matter of factly that we went to her house (3 hours away) after we left the emergency room two nights ago, before going to her assisted living place. Whether Lewy Body, or Vascular Dementia, I don't know. Don't know if it really matters. We have her scheduled for a brain scan this week, if she's able to go. But she detects that we are having her checked out mentally, and that pisses her to high heaven.

She has recently begun "picking" at things. (I've heard it called pill rolling.) Removing the splint bandage is typical of what she's doing. It's painful to watch her grabbing at things, sometimes when there's nothing there to grab. (she imagined her purse was in the floorboard of my car when we got back from the emergency room and started grabbing for it. I told her it wasn't there because we didn't bring it. She just kept grabbing at nothing.)

One day she'll be relatively okay, and tell me how much she loves me and my visits brighten her day. Next day she'll tell me she's going home and treat me like I'm the sorriest s.o.b. to ever be called a son. I could go on, but y'all get the point. I dearly love my mother. She wasn't always this way. But these days she's become Mother in the Pink Floyd song "mamas gonna make all of your nightmares come true, mama's going to put all of her fears into you."

I try my best to put on my game face at work, at church, with friends. They don't really want to hear all this, and unless you've lived it, people don't really believe it's "that" bad. I find myself saying, next week I'm going to get back on regular schedule, start back exercising, start writing the book. Then mother simply throws me a knockdown pitch that I don't see coming. Not really asking for advice, just venting because I truly miss the life I once had.

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So, I have a stray thought ... please pardon me if it's inappropriate or irrelevant for you.

My parents-in-law got to the stage where, every time we made plans -- hey! Turned out we should've planned to go to the ER with one or both of them instead. We live about 15 minutes away from them; they're still in their own house.

Since my main caree is my stroke-survivor husband (he's pretty independent, but cannot drive or plan well), I pretty much gave up on going anywhere. After enjoying more than my fill of cabin fever, I finally figured out that the only way we could plan *anything* was ... NOT to tell them we were going.

My in-laws were TRULY not trying to wreck our plans. Unfortunately, they tried to "help" us by "proving their independence." Even though our leaving for an overnight or weekend made them anxious.

Their "proving themselves," plus their anxiety, was the perfect recipe for our (well, mostly, my) vacationing for hours, or days, in the ER.

I *do* let my sisters-in-law of our plans. And somehow, my husband is able to keep his mouth shut. (Not an easy task for him, which is not his fault. I feel bad about pushing that, but he manages.)

By keeping our plans on a Need-To-Know basis, we are - occasionally - able to get out and about.

I sincerely hope you are able to similarly collude with your mother's AL staff.
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rwbpiano - any updates om how your mum is? I think knowing what kind of dementia is present is useful terms of treatment. There is no cure, but there are treatments which can help QOL and manageability of the senior. There are also groups caregivers can join for support. Sounds like you could use some support.
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I do know also how much happier I was before taking care of parents, but as I write this while sitting in car to get away, 2 squirrels are playing in front of me & they're really funny. And that's what makes it all ok.
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My mom has dementia too and while some of your thoughts are valid, don't you think she misses her old life??? Life hands challenges to everyone - you may not know about them but these are the cards dealt and I hope your book doesn't continue to be a "poor me" rant
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I truly feel your pain. Mine lives with me. She still drives and tries to cook (we just keep replacing the burnt pots). I have been trying to figure out ways to live in peace with her but the only thing that would make her happy is if I moved out but continued to pay the mortgage and taxes on this house which I can barely afford now. I considered it but my adult children are here and I can't leave them. They are my life. Today she cranked the heat up on me (we have 2 HVAC units) while I was sleeping which wakes me up. I asked why? Because the family room felt cold and so the argument began. Her side of the house was at 72 and she isn't in the family room. Doesn't matter. She said she can do anything she damn well pleases. And On and On and ON. She is going to do things to make my life miserable. Won't tell me what. I'm so afraid it will be something with food. She leaves food out for hours and then serves them a week later like they are fresh. I don't want my kids getting sick and my daughter is pregnant. At least I didn't get punched in the face today.
The last time she got in the mood to shut off my air conditioning, I bought one of those plastic locked covers but never got the guts to install it. She will go ballistic. So here I sit, not going to the gym, not planning my day, not planning a baby shower......just holding a box in my hand trying to decide if it's worth it. The anxiety is paralyzing. I never get a break. She is here 24/7. My living nightmare.
Oh and when she forgets that she did something to me, it never happened. She never locked me out of the house in 10 degree weather, never said to me "She wished I had died and her miscarriages had lived", she knows why my husband left me, ….the list is long. I used to keep a notebook in case her doctor or someone wanted to know but he doesn't.
Yes I pray, all the time. I brainstorm on ways to make things livable. I try to stay out of her way but I can only stay in my room so long. I need to do laundry and pack my lunches for work. But I need to protect others in this house. I can't eat something (or let my kids eat it) that has been sitting at room temp for 5 hours. I can't leave the AC running with the door open. Someone on here said to lie to them, it's not them, it's you. She is with it and knows she did it. She wants it open and my alternative is to just shut off the AC on my side. I suppose some people think that suffering in some heat is good for the soul or something, but I have a job that demands I be at my best because other peoples lives depend on it. I can't go to work without sleeping. It's just not safe.
So.... do I put the lock on the thermostat?
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I speak from experience. If we sit and dwell on what our lives use to be, we will be ever so miserable. But what builds strength and Character is accessing our lives now and how with the help of the Lord can we make this the best it can be. This is a temporary position we are in. We can live it in misery and regret, or we can realize we can do this with help from the Lord and it is bearable and manageable and we cannot do this alone. We do need HIS help.
But we must acknowledge that our lives before are gone and this is our life. How do we make THIS better for our loved ones and us. We have potential to become a people with much strength, courage and patience, with HIS help. Or we can sit in our misery and wither away in the mourning of our lives before.
This is one of THE hardest labors of love we will ever do. But let us do it as well as we can. We will survive and maintain and even have times of joy and happiness with the Lords help.
Its hard people I know, Oh how I know. But I also know that the Lord has helped me sooooo much in this journey of caregiving and HE continues to give me patience and peace and endurance.
Hang in there all and don't look back or you may turn to salt.
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I miss the life I may never have. Very sorry for all you are going through. My mother fell this past summer and had to have stitches in one hand. There was a thought she would need surgery but didn't? Did your mother have surgery? One issue you mentioned completely baffles me. My mother has been in 2 different Al in different states. In both all medications had to be managed by a nurse or wellness office. I am shocked your mother would be allowed to manage her own medications in Al. I cant imagine the shape my mother would be in if she had to administer medication to herself. I hope you find some days to motivate. I know that feeling and it is awful. Wanting and knowing what is best for you but not being able to follow through.
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I feel your pain as well. My husband and I moved my parents to a "tiny house" we built on our rural property when mom's Alzheimer's got so bad that dad couldn't handle her on his own. My husband SAID he was fine with them moving out here. Mom died eight months later. Dad is 88, has CHF and diabetes. He still lives here. He's fairly independent, but he's lonely, bored, and frustrated. My husband is building himself a workshop, and dad wants to "help", which drives my husband crazy. Dad is NOT supposed to climb ladders, be out in the heat, and his eyesight is so bad I wouldn't trust him with a nail gun. But he's always been a big do-it-yourselfer, and simply doesn't want to admit he can't do it anymore. So between dad trying to "help" and my husband complaining about it, I'm ready to run away. In addition that that, these two macho men take every opportunity to tell me that, whatever I'm doing, I'm doing wrong. If I ever express an idea about something on the property, they both jump in to tell me why my idea is wrong or stupid or something. I'll give myself this much credit...I've begun to dig my heels in, grit my teeth, and tell them both to back off big time or they will find themselves taking care of themselves. No matter what reasons we have for becoming caregivers, it was always going to be a crappy job. "The Waltons" wasn't real!! And for those who say to themselves, "Well, they took care of me...now it's my turn to take care of them", remember they were a helluva lot younger and in better shape when we needed care! All we can do, any of us, is hang in there and see it through. I have to believe that in some inscrutable fashion, this is making me a better person, though there are days when I feel like I have more than enough "character" already! Be strong, my friends. Peace out!
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Oh, how I relate. Though personally I feel like I'm flipping between two different dimensions (can you tell I'm a science geek? LOL). My mom is living with us (on the waiting list for a nursing home). My husband, daughter and I have a great life. We live in a lovely little New England town, in a 3-bedroom lake cottage. Our neighborhood is highly social with lots of cookouts, cocktail and dinner parties. So there I'll be sometimes, sitting in my yard with a few friends having a glass of wine on a Friday evening and thinking my daughter's down for the night (she's 9) and so is my mom. Let's light up the fire pit and enjoy some time with friends. Then, there she'll be at the back door, scowl on her face, yelling at me that our televisions are garbage and the remotes never work. Or she'll have plugged up the toilet again. Or she'll simply be inexplicably irritated (she's fairly mobile still - our dementia troubles are all behavioral/personality ones at the moment). Just like that, BOOM! I'm transported from my dimension of household normalcy to the Land of Dementia Oz.

Navigating between logical and illogical and then back again in the blink of an eye is incredibly fatiguing. Especially knowing there's more awful to come before it's over. Wait until our spot in the nursing home is available and we need to move her out. She's going to absolutely lose her sh*t.

Yup. I'm picking up a bottle of wine on my way home from work tonight. For sure.

Stay strong, friends.
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RWB -it amazes me how similar all of our stories are. I too am considering writing a book. My sister and I have said this is our “new norm”. We too have said we miss our life and have given up vacations, always waiting for the next phone call. We finally got our parents into assisted living and thought things would be better. Each day a new problem arises. Some days I just want to shut off my phone and hide. I am a Christian and I pray for the strength to handle this. I am afraid to continue to tell my friends how bad it is. I am afraid they are tired of hearing it. Some days are good days and I think ok I can handle this. Then a couple of days later it starts over again. My mother has dementia and Alzheimer’s and we fear that our father also has dementia. Today my father called and said Mom was out of dementia meds which we pay extra for the facility to manage because she went a week without taking them on her own because she thought they were not her meds. We realized we could not rely on Dad now we can’t rely on the facility. I have called the executive director and he has confirmed they made a mistake and are investigating the issue. We are trying everything we can possibly do but what do you do when you realize the people who are supposed to help are making it worse!
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Your story hit home with me! I am 51, only child, small business owner. My mom lives down the street from me, independently (sort of). She is an alcoholic who abuses anti-anxiety medications and has taken two falls in the past 10 days (hospitalized once). She is only 76 but now almost unable to walk or bathe, etc. She says she will kill herself if I try to move her out of the house (sigh...). Dad developed dementia (I think years of drinking, drama and negativity took their toll) and lives in a memory care ALF. Mom refuses to take responsibility for managing his care. It ALL falls on me: two miserable people living in two different locations. They are too young to be in this state, so I fear we are in for a very loooooong future...
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Sometimes we think we know how life is supposed to be. But, in fact this is life. And this is our life now. Good or bad, easy or hard, it is our life.
We make the best of it and do the best we can.
By the grace of God go I.
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8 years I've been taking care of mom...she's 88 now...and still going strong...she lives in an Adult Foster Care facility currently - which she hates.

Previously Assisted Living - which she hated.
An apartment which she couldn't manage - and fired everyone I hired to help and hated it there too (used to say it was 'a hole')...now she talks about it like it was a paradise!

The AFC manages her meds and preps all meals. Wonderful lady from church helps her with laundry and shopping; takes her to appointments/hair and doctor. The backstory there - briefly; she was verbally abusive with me the last time I took her shopping - won't give her that chance again.

I limit my visits with mom to once a week - she got to be too much for me - the constant berating and criticism; arguing about everything; defending her temper (oh, it's just the 'Irish in me' - giggle giggle' - get over it!)

I just couldn't take it. So, at the risk of sounding selfish (I'm 65 in a couple of months) and I know many others are taking care of their elderly parents I just had to get more help...mom wanted to come live with me since the docs told her she could no longer live alone - but that would have been basically the end of life as I know it. I still work full time and take care my home, pets and husband. I just couldn't take on full time care of mom too.

You sound like you've gone above and beyond and it may be time to get more help for your mom - contact Visiting Angels or another help or aid organization in your area to see if they can help by spending some time with your mom...a few hours a week so you can have a rest - write that book or enjoy time with your children. Take some time to re-charge your batteries.

Bless you for what you've done already - and seriously your comments are very well written...write the book!
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Hey rwb you are a hell of a good writer. Maybe this experience could be the foundation for your first novel. I'd read it!
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Rw- most of us are feeling your struggle personally.
Hang in there will keep you in my prayers. As PB said we need that bit of oxygen to survive, so try and get a good deep breath of it to revive, even if but for a moment.
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I totally feel what you're feeling. I'm in the same situation; although this is my 4th year of Groundhog Day (the movie) which I didn't notice til it was too late. People won't understand til they have to go thru it and the sad part is Most aren't emotionally or physically strong enough to do this. Yes, the physical aspect IS there, but no one other than those of us who are going thru it know or understand it. I'm going to tell you this: Right now, writing that book Will save your sanity and it will be your best release of stress you'll be able to get. Do not let it gather dust, even for a month because that month will be a year when you realize how long it's been. Even as little as an hour a week will be good for your health. I've recently started picking up new science fiction novels again. I set aside an hour a week to read and it never fails to relax me 10X more than my sedatives I take for sleep. I have to limit it to just an hour though since I work 12hr/day 6days/week on 3rd shift. Taking care of Mom is, well, it's a son's duty. I do love her but I hate the disease. I have days when I fight that in my heart still, but reading is my release and it settles me down for the next week to come. The other release I'm finding that helps is Here. You can ask questions, give advice or vent and No one think of you adversely or belittle you. Honestly, most will support you and offer advise that helped them. I sometimes get emotional reading some of the other post because my Mom isn't at that stage yet but will eventually end up like that. It's hard looking ahead because it can get depressing and it's only now that I'm beginning to understand why they have said to learn to "live in the moment" when taking care of your parents with this disease. I'm learning to just look forward to tomorrow with her and hope that it's not worse than today was. I'm just looking to wake up tomorrow with the renewed strength to do it again...and to get her to laugh. She looks so much younger when she laughs, like when I was a kid. I'll send a prayer your way to give you strength. BTW, I hope to be able to get a chance to read your book. You might even be able to use this as a story line in your book. God Bless
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Rwb - just a reminder for you and everyone including me that when you fly, a flight attendant always tells you to put on your oxygen mask first before helping someone else.

We have to help ourselves first, have enough mental and physical health, before we can help someone else.

Go visit your daughter, and take that vacation, etc. perhaps shorter visit and vacation than you would otherwise, but you need them as much as your mother needs her care.

You have to refill your tank, don't run on empty because that's how we get burn out. I know easy said than done. But I have to to try for my DH and kids' sake.

Also, did you really need to be at the ER with your mother for 8 hours? Could you just have left your phone number with the nurse in charge to call you if they needed someone to make a decision for your mother?

Father's Day is coming up soon. Make some plan for yourself. You deserve it. Same for all the caregivers out there who are fathers.
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I’m sorry you’re dealing with such a merry go round of frustration. If it means anything I really do vote for writing that book, you’re a very good writer. I hope you find the opportunity
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Rwb, I totally understand.

And I get it too about sometimes keeping a game face on among people who have "normal" parents because I hear, "They took care of us, so we have to take care of them." Or, "Your poor mom, it must be so hard for her." Which it is, I know, but it's hard on me also, especially when my entire family on her side has been nothing but dysfunctional. I do feel a duty to help mom, as she really has no other family members that aren't abusive that are willing to, but we don't have the close mother daughter relationship that many do. I just feel in some ways as if I were helping a stranger (a very clingy, paranoid one at that).

I have woken up with a knot in my stomach almost every day since I was young, always waiting for the other shoe to drop, because I never knew what drama the day was going to bring.  Therapy has helped me to deal with this to be able to enjoy the "now" more than I used to, but I still deal with it sometimes, especially with mom here for the time being it feels like my world has been turned upside down, and I have no energy.

I know it's definitely not easy, especially when you feel like you can't just enjoy your own life because of worrying about your (often unappreciative and difficult) parent.  This site is a tremendous help to be able to vent to and get input and advice from people who do understand.
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For a minute I thought you were writing about my life. I'm sorry we're having to go through this and I absolutely know how bad it really is. The day can start out with hope but chances are some drama looms overhead and is sure to fall down on us. Every single day. While your mother wasn't always this way, mine always was. Narcissism personified - no room for my own dreams or desires. So sad. Stay strong and value your own life as much as you can.
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Im sorry to hear about your situation. Every time you reach out to embrace your dreams you've got to grapple with your mother's dramas. It can be so frustrating
especially with parents who chose not to be proper parents in the first place.

I dont' know if I have any advice, other than to find support with others who have been
there in your shoes. Sometimes I can really sympathize with the limitations that aging
brings, but other times I realize that my father has consumed my life so he can better
enjoy his own. And by enjoy, I mean sometimes creating drama that is wholly unnecessary.

I think part of the hardest things is that when your parent behaves narcissistically,
you don't even have the warmth and love of a close bond to weather the frequent
trips to hospitals, doctors, etc. When it's nothing but drudgery and negativity, it's
hard not to become hopeless and negative yourself, but its so important to find creative
ways to combat this. I'm struggling with this very thing right now.
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