Follow
Share

My mom has been caring for my Dad for ten years (the last 3 with my help.) He was a stroke survivor and passed in January. About a year ago, we moved him to a Board & Care and she moved in with my brother (which she begged us to do.) She wouldn't allow more hours for caregivers (she didn't trust them) so he needed to move to receive the help he needed. Dad commented that Mom has MCI and I realized she wasn't even giving him his meds (he had a seizure because of it.) She got lost a few times so we decided to take the car. Her doctor has given her a diagnosis of dementia.


When she moved in with my brother she accused him, my sister-in-law and my niece of all kinds of ridiculous things. She begged me to move her to an Assisted Living that I'd shown her. We moved her at the beginning of this year and she constantly texts us that she's bored, depressed, and wants to be with family. When she is with us, she spends all her time in her room or asking the same questions over and over and she hates when we go out. She fills our voicemails with calls about us being mean. I should mention that when I'm not working I see her two to three times a week (doctors appointments) and my brother and sister are there every weekend. She seems like she's trying to manipulate us as she complains about one child to another. It's exhausting.

This is such a difficult journey, and it can be hard to know what to think. My parents were negative even before dementia set in for them (they each have a different form of dementia). As their dementia has progressed they’ve become even more so. This negativity has meant they complain about my sister to me, they complain to me about my sister, they complain about both of us to each other, and they complain about the AL staff to both my sister and I. Often these complaints involve things that did not happen, or happened differently than my parents remember. Because we know this is a manifestation of their dementia we let the speak so they feel heard in the moment, but we have learned not to act on their complaints without carefully (avoiding accusations) verifying them. It took a while for us to reach this strategy. At first we tried to “fix” their concerns, then we, like you, felt manipulated, then we realized that really wasn’t the case either. Their reality is altered, they are unhappy about the way their lives have changed, and they are coping with the only tool they ever knew: complaining. Every step of this journey brings fresh challenges that can be confusing for both you and your loved ones. Support from groups like this can be so helpful; I know I have found it so. Be gentle with yourself, surround yourself with support, and keep seeking information—it’s your best defense. Wishing you strength, comfort and peace.
Helpful Answer (8)
Reply to MelissaPA2AZ
Report

My mom is in early stages of Alzheimer's. She is very critical of everyone around her. My sister and I don't speak now because she believed my mom when she told her that I scream at her. She tells her doctors that I torture her by looking for problems as an excuse to bring her to the doctor (because going to doctor's offices is fun for me, apparently). Mom seems to be most critical of people who help her the most. I do the most for her, and have for over a decade, even before the dementia diagnosis.
I discovered this forum recently, and it is good to know I'm not alone in this. Another thing that I've begun doing is scheduling something good for myself right after a visit with my mom. Last week I had a mani/pedi immediately after my visit. Sometimes it's just dinner with a friend. Take care of yourself so you can be strong for your family and for yourself.
Helpful Answer (7)
Reply to schrederkim
Report
Gerip1092 Aug 26, 2018
It is always the ones that do the most that get all the grief. I am the only girl( I have 2 brothers), I go regularly to see my mom, they do not. Always the same questions, why an I here, I want to go home. She had a stroke 17 years ago, I gave up many things to take care of her. When dementia hit, it was time to move her to a NH. She was not happy at home either, I would get multiple calls a day and night, she would say she hadn't eaten, even though I left her plenty of food, she would stay in bed all day, the list goes on. Lose the guilt, I have given so much of my life to help my mom, but it is never enough. We do what we do, because we love them, but we deserve a life too. Good idea treating yourself.
(0)
Report
See 1 more reply
I'd discuss her behavior with her doctor and read a lot about dementia. I'd explore whether your mom is depressed with her doctor. Depression and anxiety are quite common with dementia patients. If she does, she needs treatment.

Because the brain is damaged, the patient acts in ways that we might not understand and that don't seem to make sense. At times, we feel they are not being truthful, but in fact they may not recall what they have told your previously. Even if a person used to be manipulative before they get dementia, based on all that I have read, they have limited brain function afterwards. So, to be safe, we assume it's dementia and handle the situation accordingly.

There are some excellent videos on You tube about dementia behavior by Teepa Snow. The repeating, rambling, incorrect statements, delusions, hallucinations, etc. can be exhausting and each family learns how to manage it as best they can. I learned that comforting words, distractions, medication, and proper care in a Memory Care facility worked quite well for my LO, though, it was a rough road getting there. I realize that is can be so stressful.

I'm not sure what you mean by her hating when you go out, but, I would not leave her alone at all for anytime, based on the symptoms you have described.
Helpful Answer (6)
Reply to Sunnygirl1
Report
IzzyB1313 Aug 29, 2018
Thanks, Sunnygirl1.
I will look up the videos by Teepa Snow. Her name sounds familiar. I think someone mentioned her.
We've tried to be as comforting as possible but when she gets negative it's hard to divert her. Sadly, suffers depression and anxiety as well as from dementia.
I don't think I was clear about going out. When she lived with my brother and when she stayed with me (before the diagnosis ) she got upset if we left...to work, shop, etc.
She still gets upset when we leave after a visit. We receive angry calls after we've left. Very frustrating.
Off ro YouTube now. Thx for the resource. :)
(0)
Report
Simple solution. Tell her to quit her complaining pitting one against the other and if she doesn't, walk out. Every time she starts talking bad about one person, tell her to stop. If she doesn't, get up and walk out. She will get the message because she will realize that her bad talking gets her nowhere. Check with her place of residence and find out what sort of activities they have and encourage her to join them. As for your voicemails, tell her to stop leaving messages that are negative, etc. because if she continues, you will delete her messages as soon as she starts talking and you will never know if there is something serious that you should know. Bad behavior can only continue if two play the game.
Helpful Answer (6)
Reply to tperri123
Report

As said, this is a Dementia thing. Very few are happy with change in the early stage. How can she be bored. There are other residents, activities and outings. Do not move her. Things will not change but will worsen. Change is not good for Dementia patients. She is better getting used to her surroundings.

At Moms AL, a man was brought in that could no longer be reasoned with. All he wanted to do was get out. The ALs front door had an entry pad but the fire doors could be gotten out of. There was a 15 second delay from when the person pushed on the bar and the door opened and the alarm went off. I heard one of the aides say that he was brought to the facility too late. Meaning, if he had been brought earlier in his Dementia, he would have more likely excepted the AL as his home than trying to place him later.
Helpful Answer (5)
Reply to JoAnn29
Report

My Mom failed a lot after my Dad passed 7 years ago. She played one sibling to the other. It was a mess. I have 2 brothers. I am the oldest and have been taking care of my Dad and Mom for decades. The boys only ask for money and favors. Mom is in Assisted Living. Her dementia is worst and she is moody and refuses to shower, sometimes even eat and she is a diabetic. I have seen that she will listen and cooperate better with the caregiver's than me. But still she gets crabby and snappy with them. As far as medications, mom was on an anti-depressant that caused her heart issues.No more of that kind of medication. They never worked anyway. Elder's as they age are better off without medications , if possible, there are too many side effects and honestly age seems to make it worst. I truly know my mom does not mean to be moody,she has apologized when she remember's she was mean. I do not think they can be held accountable for their actions at a certain point and time. Even if you try implementing some rules or consequences, they do not remember. Sad really. My 2 brothers only took money and do nothing. I moved out of state and mom came with me. The Doctor's said it would kill her with all the drama. Some of the drama Mom caused but still I had enough also. My Bi-Polar brother started drinking and beat me up twice. I am happier moving to Virginia. It seems peaceful with out all the drama. I would rather take care of her myself than to have the e drama. But dementia is not an easy thing to put up with. Decades ago it was health issues but not dementia. I think with having dementia it is needed to have very supportive around the clock support and a watchful eye. My Mom has not been the same since my Dad passed, at times it seems she really is not there. She repeats and repeats and gets me confused. But I love her so much. I have to only take so many hours of dealing with her illness because it hurts me and gets me to have anxiety. We only have one set of parents, I was raised to love and respect them. But I know I cannot take all the drama and getting mom away from my 2 brothers was a Blessing for both of us.
Helpful Answer (5)
Reply to STAYSTRONG57
Report
IzzyB1313 Aug 27, 2018
Dear Staystrong,
Thanks for sharing your experience with me. I'm so sorry it was so hard for you but glad you were able to move yourself away from harm.
I feel the same about my mom. I love her but this behavior isn't how she'd behave if she were in control. I have read that dementia sometimes make it seem like manipulation. She often denies her behavior or laughs it off. She's still my mom but just not able to care for herself now.
Thanks again. Sending good vibes your way. ♡
(0)
Report
I would eventually "lose the phone". Out of sight out of mind. Really surprised she still can use it. My Mom never learned how to use the most simplest one. Forgetting how to use her cordless was one of the first things.
Helpful Answer (4)
Reply to JoAnn29
Report

IzzyB1313;

PART I:

Most of what you have posted can be attributed to dementia. Sometimes some of the behaviors (for instance bad mouthing the others when they are not around) could have predated the dementia and are now just exaggerated by the condition. Everyone experiences dementia in different ways (even the type of dementia can affect what behaviors you experience.)

Accusations, especially ridiculous things? Check.
Moving but then complaining still about where they are? Check.
Remaining isolated? Check.
Repeated questions or statements? BIG GIANT CHECK!
Hating to be left alone (and alternatively complaining if you take her along)? Check.
Calling you mean (probably for leaving her in AL)? Check.
Feeling abandoned although they get regular visits/outings? Check.

Manipulation by complaining about one child to another? This could be a Check, but also might have been something she has been doing all along, but perhaps it was not apparent then or has become more prevalent.

It's exhausting. Check.

The best you can do is to educate yourself about dementia and what YOU can do to alleviate behaviors or guilt.

You can learn to let the complaints drone on and drown it out (I sometimes refer to this as the 'pretend you are dad at the breakfast table with the paper... uhm hummm, yep... whatever you say...')  

Between siblings, you already know she what she is doing, stand in solidarity with each other.  

If the complaints come via text or voice mail, just delete them (unless you need them to confirm any Dx, in which case just store without reading!)

If the complaints, accusations and/or manipulations are made in person, you can choose to ignore them, try to redirect her focus elsewhere and get off the subject, or if she is aware enough and you don't have to get to an appointment, cut her off and say you'll be back when she has something nice to say and LEAVE! Sometimes this can sink in, especially if you AND your siblings are consistent and maintain this front! If not, she gets to sit alone.

TO BE CONTINUED...
Helpful Answer (4)
Reply to disgustedtoo
Report

PART II:

Playing favorites or manipulation:

Mom was always good at that. Talk about us and everyone else BEHIND THEIR BACK!  I have so much of this crap in my head... I swore if she were to do it again, especially my former SIL who passed away, I was going to light into her! However, for the most part this has gone with the dementia, so it became a moot point.

Funny that she was ALWAYS so effusive about my older brother - "Oh he calls me EVERY Sunday" (he is not local, so visits were very limited.) That's great mom. I call multiple times/week and come to assist when you need it (while she was still able to live alone.) My other brother lived closer, so he also spent time doing things for her, yet this other "golden boy" was revered. He shows up, you'd think it was the Second Coming of Christ!!!! Yet shortly after he would arrive to visit and most every day she'd sit in her chair with the paper or a magazine planted in her face and ignore him. WTH??? During his last visit, he went once with me and once again the next morning and refused to go back, saying he doesn't know what to do with her or how to relate... I'm the one who spends time visiting (and handling all the various "affairs".)

She complained about being bored, wanting to get out when she was in her condo, yet slowly stopped going to various activities with others (we had to take the car away before the dementia really kicked in, however by then it was just "down the street" to the grocery store. Given damage she was dong to the car, I figured it was a matter of time before she killed herself or someone else!) She complains now at MC "there's nothing to do." Same either way, so LET THE GUILT GO!!! Your mom, like ours, won't be happy no matter where she is, but YOU all will be happier without her in your homes!!!

Accusations? The first few happened before I realized dementia was on the doorstep. First was someone doing work for her taking some broken jewelry that she was going to trade in for cash. More than likely she just misplaced it (along with myriad other items!) Then she accused same golden boy brother of taking her tweezers when he was visiting. Seriously mom? Tweezers?? Why on earth would they steal THAT? They are like $2 at the drugstore! I picked up another for her and after we moved her to MC and started cleaning up, I found at least 3 pair in her bathroom and about 6 or more in a plastic cup in a dresser drawer!!! So unless you suspect someone is doing her harm, learn to brush those accusations off, listen attentively, tell her you'll look into whatever it is and move on to something else.

Isolation - my brothers were all set to get her TV and phone, but I said no. TV in her room would enable isolation; part of the plan was to increase her socialization, which is a key to helping keep dementia patients engaged. She was already self-isolating at home - Senior Center activities were something the ladies (and some men) looked forward too, especially the free meals! She backed out more and more often despite everyone's efforts. As for the phone, her hearing made that very difficult and I knew I would be getting calls all the time to request getting her out in some way. She never really called just to chat, but when she needed something, she would call ME. I even had to instruct staff to pretend to call me when she asked, then tell her it went to voicemail, they left a message. This would temporarily satisfy her and she would sooner rather than later forget about it! If she had an issue that needed to be addressed, they would let me know!

So just some examples to let you know what you are seeing and experiencing is "normal" for dementia patients. Listen, learn and find ways to cope! Look up and read everything you can. You can always ask more questions here or just seek out companionship and understanding (family and friends who have not experienced this will be clueless and offer sometimes ridiculous advice or lay blame on you - tune them out too!!!!)
Helpful Answer (3)
Reply to disgustedtoo
Report
IzzyB1313 Aug 27, 2018
Oh my. I almost cried reading what you wrote. I've had all the same issues, feelings and frustrations.
My siblings and I have all felt the guilt. The constant phone calls, accusing and complaining, have really worn us down. You're so right. We need to let go of the guilt.
We really do try to do the best we can for her and we shouldn't feel bad about that.
Thank you for your reply and your suggestions about more doing research. I really appreciate being able to share here and your encouragement helps so much.
(1)
Report
See 1 more reply
Izzy: "Is manipulation part of dementia?" Thinking about a person with dementia in the worst form, I would say that, for the most part, that a person does NOT have the wherewithal to control or influence, which are some of the synonyms of manipulate. They may act out in childish action, but their minds are broken.


Post script: I clued into "calling you mean." Well, my late mother called me Hitler. While as mean-spirited as it was, it meant that she didn't have a clue what she had said....or what Hitler had done. At the time, I reminded her what Hitler had done, but she was not aghast and showed no emotion.
Helpful Answer (2)
Reply to Llamalover47
Report
IzzyB1313 Aug 27, 2018
I identify with that behavior. My mom accused my sweet niece of stealing but when I explained it when she was more lucid she was horrified.
Thanks for writing me. Your comments give me much to mull over.
(1)
Report
See All Answers
Subscribe to
Our Newsletter