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As my mother's Alzheimers progresses, our family is getting more and more calls of paranoia, I'm lonely, I'm depressed calls, and crying fits. She lives with a man, who is getting frustrated and threatening to leave all the time. Each time my sister and I try to come up with plans of action or suggestions that would help orient or calm my mother, she rejects the ideas and gets mad, demanding no change. She has always been difficult and self centered to those who know her close, but sweet to outsiders. I'm having difficulty trying to separate the disease from the person I have known all my life. I'm visiting 5 times a week, but it always ends with the same pitiful me. I can't make changes to help the situation, but I cant keep things the way they are. Does a person just make the change and deal with the fallout?

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I was able to deal with the paranoia and loneliness with a dog. I said "you are getting a dog." Then, I found several adoption events and got recommendations for selecting an appropriate adult dog from a service animal group. I made the decisions and it helped, a lot.

Sometimes, your only option is to act in their best interests because they don't have adequate agency anymore.

Initially, she was extremely nervous about the dog, wouldn't talk about it, and even called a dog adoption organization I was working with and swore at the lady. But making the decision was the right move and things are better for it, so much better. The presence of the dog solves about 30 problems. I think other care decisions are similar, you have to make a choice and people will be better off for it.

Having an animal around offered psychological "pet protective effects." When mom gets suddenly afraid, the dog runs over to her and then mom relaxes. And mom's general cognitive abilities are becoming limited such that the dog really takes up all of her faculties some days and she would find a visit or a person overwhelming in addition to the dog, so she is okay with just the dog there.

If mom is afraid i say "is the dog barking?" mom says "no..." so i say "oh, it must be safe then, the dog is very smart." and mom relaxes and says "yes, animals know if there is a problem."

I know this means I will end up with the dog when she can no longer care for it but the dog has made a world of difference to the paranoid and aggressive behavior.

If mom is irritated, she can say terrible things to the dog, who really doesn't know any better and is blissfully unaffected by the venomous comments. Mom yells all the time, the dog doesn't pay it much mind, and importantly the dog doesn't escalate the conflict which is what happens with phone calls and in person. I recently bought a temporary window insert dog door so mom can forget to let the dog out and it's fine, that took some trial and error because the dog door was initially unacceptable to mom.
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katydid1 Jan 2019
What a lovely idea!! Not only does a pet help with the emotional issues, but I bet it is also helping to keep mom more physically active. Sounds like a win/win!! :)
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It sounds like you have a lot on your plate. I have taken care of my MIL for seven years. Dementia doesn't bring out anything new...it just magnifies who she has always been. My girlfriend who had blazed the trail and been through what I am now going through tried to tell me! But until you walk the walk, you can't quite "get it."

My husband and Sister-in-Law always considered their mother selfish and self centered. I demurred and gave her the benefit of doubt. Wow was I wrong! I made One Million mistakes including visiting too often, over empathizing because I felt so sorry for the spot she was in. I also made suggestion after suggestion to no avail, she had "reasons" why the suggestion wouldn't work.

Please pace yourself. Of course you feel bad and want to make suggestions to be helpful and make her world happy. Please don't try to "do it all." You run the risk of burnout, bitterness and bad habits.

Since her man has threatened to leave, I would expect and plan that he will at some point.

I humbly suggest you take things as they come because things you never imagined are likely to crop up. When and if they do, deal with it then.

I love caller ID and voicemail. We don't ALWAYS have to take our LO's calls! We are not being cold or mean. We are preserving ourselves and our health so we can be in this for the long run.

Very good luck to you. Do something nice for yourself today...you deserve it.
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BlackHole Jan 2019
Good advice. Thank you for sharing.
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For me, I just made the changes and I live with my mother. But I knew that she was/is not able to make good decisions. I started cleaning out her house, took over paying the bills and over seeing all her meds and will over all medical decisions.

Because the changes are small ones, I would just go ahead and do them; this way when the time comes for you to have to make big changes it will be easier on her and you. This is what I did and it is getting easier to make the necessary changes. My mother even looks to me to make the decisions! I thought for sure h3ll froze over!!

She will get mad and yell--mind did, but it didn't last long and now I don't think she even notice or cares!

I really think we are hardwired to not have a parent get mad at us and we are use to them making the decisions, so it can be difficult for us to go against them or disobey them. But we just have to remind ourselves that they are not what they once was:( Good, Bad, or Indifferent!

Good luck!
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It's great you are trying to help, but, I'd try to keep in mind that with dementia, you may not be able to calm her, make her happy or satisfy any of her demands, regardless what you may do. Can you discuss medication with her doctor? Meds were really the only thing that brought my LO peace of mind and helped stop her crying. The change was amazing. However, you would need to ensure that she gets the proper dose of medication on a daily basis. Will her roommate do that? Does he have any legal authority to act on her behalf?

I don't know his situation, but, her roommate is likely overwhelmed with her behavior and that may be why he keeps threatening to leave. It's difficult to live with the erratic and unpredictable behavior that dementia can bring. There's often constant pacing, crying, repeating and sleep disorders.

If she will allow you, you can discuss the issue with her doctor, but, if not, I'd consult with an Attorney to see what you need to intervene. If she refuses all help and she's in danger, it might require legal intervention. Can you talk to her roommate and see if he will assist?
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cheryl1265 Jan 2019
I have been able to go with her to her physican visits, and I believe he is on board with anything that I may need to help. I will give him a call tomorrow and talk to him about some medications. I prepare all of her medications and so far, she takes only what I leave on the counter for the night, while the bottles are safely out of sight.

At this junction, her roommate has been very hard to deal with, but as things get worse, I believe he will either change to help or eventually leave. I have had this conversation with him, but he has made no promises either way.
Great advice, and oh how I appreciate this forum. Talking with others in the same situation is a comfort.
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What kind of changes do you think need to be made?
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cheryl1265 Jan 2019
Small changes right now, like setting up an extra bed in an empty bedroom so that someone can stay if needed. Throwing away clutter and organizing bills and mail so they dont get lost or not paid on time.
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Even small changes confuses them. My mom will say mean and hurtful things, but I have to remember that it's the dementia. Sometimes it's hard and I have to leave the room when I can't take it anymore. We had to get my mom a new phone(she lives with me)so we got her a senior cell phone not much different than her regular phone. She will call me at work using the phone to yell at me that she does not like her new phone because she does not know how to use it.
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vicky64 Jan 2019
That is funny, 2briede!!  One of those things we can laugh about when there is nothing else funny at all!!!  In time she will realize that she is actually using the phone you gave her and have something else to complain about....  but for now!!!
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She is exhibiting "showtiming." Sweet as pie to outsiders, displays acrimonious behavior to those who love and care for her.
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Unless you have POA, there isn't anything you can do. The "fallout" would be a disaster. If it was my decision, I would cut the visits to an occasional time. She has rights, any attorney will tell you that. The visits are causing your stress. And DON'T feel guilty.
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Cheryl1265;

PART 2:

"Each time my sister and I try to come up with plans of action or suggestions that would help orient or calm my mother, she rejects the ideas and gets mad, demanding no change." 

Some issues with dementia is inability to reason and/or make rational decisions (sometimes no decisions at all, or worse, bad decisions!) Making suggestions is great, if she will comply, but clearly she will not. Multiple offers/suggestions to take care of things were rejected by our mother. Mom, lets go through all the clothes and take out what doesn't fit. Oh, I take good care of my things. Sure mom, but if you can't get into them... I was waved off. Had I known that she had every closet, drawer, box, tote, chest, bag and FIVE porta closets FULL of clothes, I would have pushed harder or just done it. I had no idea until after we moved her (I didn't go around "inspecting" the condo.) When I would offer to take over her bills, oh, I'm fine, gives me something to do! When I could see errors being made, I stepped in and took over without suggesting or asking permission (two of us had POA.) I had one brother take her out for the day and took ALL paperwork, bills, checks, etc out. She never missed them. I had to take EVERYTHING, because she was digging out old stuff and thought her W2s for pension was inheritance from someone who died (because it was dad's pension and had Death Benefits on it.) The only time she complained was when I temporarily forwarded her mail so that I could contact all billers and change billing address. "I get OTHER mail besides bills!" But it was only for about 1.5 months, to try to catch billing. I did initially leave statements for banking going to her, but changed it as it was better that I have them and they not get lost. Thankfully I did, because when the yearly insurance bill (I missed that one!) came, she called bank and asked for checks. They came to me! She tried again and was told I have them. Never heard another word about it!

"She has always been difficult and self centered to those who know her close, but sweet to outsiders."

I can relate. Mom was kinda like that. She'd even insult me in some way, but tell others how wonderful I was... Go figure!

"I'm having difficulty trying to separate the disease from the person I have known all my life. I'm visiting 5 times a week, but it always ends with the same pitiful me."

 Maybe visit less often?

"I can't make changes to help the situation, but I cant keep things the way they are. Does a person just make the change and deal with the fallout?"
You said these were some of the changes: "Throwing away clutter and organizing bills and mail so they don't get lost or not paid on time."

As I related above, have someone get her out of the house (family? the "man"?) long enough to accomplish each task. It doesn't have to be all in one swoop, may take multiple trips. Take the bills and have the bills sent to you (most can be done without POA - they don't care where the bills are sent so long as they get paid!) Until you can get full control over her finances, you can sit with her and the bills and see that they are made out and then YOU mail them. That allows her some control, but ensures they get paid correctly on time. If she questions how you have the bills, tell her you just got them out of the mailbox!
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Before I answer I want to say for you to make sure you or family have all the legal documents in place to make decisions for her. It is so much easier for you in the long run, but also for another reason.
Figuratively, my mother could be your mother's sister. Same frustrating behavior, same hurtful things said, but I am the only child so I have no one to share with except my ever-patient husband.
Years ago mom and her attorney made all the legal docs I would need to speak for her. Flash forward to her elder years, and her behavior was untenable. I live far away - she would call me convulsively sobbing, "I can't do this any more," and I would fly there to supposedly "help find a place" for her to live. I'd get there and she'd smile sweetly, pat me on the hand and say how nice it was for me to visit her. When I said that's not why I'm here, and explained, she would go ballistic, argue, refuse to go anywhere.
Anyway... Her physical health broke about 2 1/2 yrs ago. Numerous hospital stays until finally the releasing dr said I have to stay with her for a few days. My mom heard "can't live alone anymore."
My mom thinks doctors (and other professionals) are the end-all of authority. Whatever "they" say is law and there is no other interpretation.
Fortunately, those years-old legal documents all came into good use and she is now safe in AL (which she complains about) and I have a little piece of mind.
One suggestion I have is pay attention to words you say that either trigger her tantrums or words that she says repeatedly and you change those words to something else. I still deal with this, so that's why it's on my mind. For instance, I decided I can no longer say how nice it is that you don't even have to cook anymore because that makes her think of her imagined "theft" of all her cookware (I have all her cookware), that someone STOLE it from me when I was in the bathroom! HOW DARE THEY! Ugh. So, note to self, don't ever say anything about her cooking/not cooking again.
It's ongoing.
There have been instances of horrible tirades, unconscionable things said by my mom to me and then she'll smile and say I'm such a good daughter. I've wondered if she's mentally ill after things like that. No matter, she is now cared for and I think that's the most I can ask for, but it's because I have legal documents and her long time attorney that allow me to speak for her best interest.
Peace.
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