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.
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.
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. :)
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.
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.
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. ♡
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...
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!!!!)
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.
♡
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.
Thanks for writing me. Your comments give me much to mull over.
In the past, she carefully controlled the behavior and manipulated us into keeping her "secrets" by playing on our trust and love for her. But dementia keeps her from having the capacity to pull the strings behind the scenes, as we all are comparing notes and stories. My mom and my uncle are acting like fools and haven't figured it out yet. But my siblings and I - and all of our kids - have decided to end the secret keeping and pull together by being open with each other and fact checking directly with whomever is the target. I'm not going to say that it takes the sting out of things when you hear what she's saying about you, but it makes it much easier to see the big picture and move past the drama.
I appreciate you sharing your experience with me. ♡