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?
PART 1:
Hopefully you already have POAs set up. If not, it may be too late. If/when you have to intervene, you'll have to get guardianship/stewardship via the court system (consult with an Elder Care atty.) To solve the financial issues you related in responses, you WILL need to have control - POA will work, but not if you don't have it set up already.
What is/are her source(s) of income? Assets? If only SS, you can, w/out consulting attorney or going to court, apply to be mom's rep payee. Documentation from doctor would help, but call local SS office (not the main 800 number!!!) and schedule an appointment. They will ask a lot of questions, then submit for review. If approved, you have to set up a special rep payee account which only YOU can access, which has no other funds associated with it and keep good records on how it was spent as they require yearly reports from you. I was able to do this easily - first month came as check, but once all is set, you can get electronic deposits. Legally this is the RIGHT way to do it; SS does not honor any POAs.
If she has other income/assets, consult Elder Care attorney (use her assets to cover cost, but first hour consult should be free - get all questions prepped to use the time wisely!)
In a response post, you said:
"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."
As others have suggested, perhaps a mild anti-anxiety med would help. If she is consistently like this, she may need to have this daily. Is there a specific time of day that gets her worked up? If later afternoon/early evening or even later evening, this could be sun-downing. The medication would help immensely (sometimes different ones must be tried to find the right fit. Taken shortly before the time this happens, Lorazepam works for our mother in about 15-20 minutes! We only have it "as needed", so if she starts exhibiting signs, they give it to her and shortly after she will calm down.) Also, I would consider a locked dispenser - these allow you to set up a week or more worth of doses (depends on how many/day and how often - allows for meds needed at different times of day). It will save you some time you set up for 1 week, 2 weeks or even a month depending on how they are taken, avoids you having to do it daily or worrying about her taking too much from one of those little plastic dispensers.
For the phone calls, you have several choices:
1) let the call go to voice mail
2) take the call and try reassuring her. Tell her you'll be by shortly (even if you won't - chances are she will forget or lose track of time.)
3) try to refocus/redirect her onto another more pleasing topic (doesn't always work, but worth a try!)
"She lives with a man, who is getting frustrated and threatening to leave all the time. "
You do need to have a solid plan in place for when he has had enough and leaves. Dealing with dementia isn't easy and can be a deal breaker for those who don't understand/cannot cope with it. Most likely he will be history soon enough. If he leaves, can she live alone safely? Can she afford to live alone?
Just this week she has been bringing up dying. She has never brought this up and I was wondering if in her mind, the dementia and death is related. She actually was pretty specific on what funeral home and services she wanted. I was stunned as she didn't want to talk about it when she was fine.
Living alone is possible physically, however emotionally she would be devastated. She can afford to have a sitter when we aren't there, but not sure how to approach it. I tried to hire a housekeeper and she didn't want a stranger there, so a sitter would be another stranger she'd kick out. Any suggestions on how to introduce a sitter for when that time comes?
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!
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.
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!
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.
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.
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?
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.