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Sabrina52 Asked January 2023

How do I transition to accepting my mom's inability to socialize anymore?

I’ve seen a decline each month in my mom for the last 9 months with short term memory loss, signs of dementia, agitation, racism, and a complete inability to socialize, even with just her immediate family. If she is not able to be the center of the conversation, understand what’s going on or be included by me at all times, she withdraws and becomes insecure, isolated, and the victim (I purposely leave her out, I don’t want to be around her, etc). Lots of new emotional expectations are put on me and in group settings, that just doesn’t work. I am learning that social settings of any kind are not positive and she can only handle one on one conversations/interactions. I feel horrible not inviting her to birthdays, holidays and especially Christmas now. She talks about traveling but has cancelled every small trip the day beforehand claiming she’s sick. She’s become quite racist in her comments privately and publicly. The lawyer and her grandchildren have corrected her in that arena. Everything has to be about her or she feels the need to leave and it doesn’t matter what time of night it is. She’ll get in her car and take off on dark mountain roads just to get to her space. We are not able to travel during holidays due to my husbands vocation so we invite her to be with us. I’ve tried inviting her early so I can pay attention to her knowing there will be other people later but it doesn’t matter. I’m always the bad guy. Its very hard to accept because I’m not doing anything to warrant this attitude but I’m the one she blames.

Fawnby Jan 2023
You've already learned a lot about how mom is now. What you know is that she can no longer operate as the person she once was. That person is gone.

How do you accept this? Well, if she has inability to socialize even with her family, don't expect her to socialize. Leave her out. It seems cruel from your perspective, but it's actually kinder than what you're doing now. Don't participate in planning the outings she's going to cancel. Don't encourage them. Don't invite her to be with you and husband at gatherings. That doesn't make her happy and it puts you in a bad position. You feel bad about yourself afterward, and that's not good for anyone.

What's clear is that she is telling you by her behavior what she can handle and what she can't. What she says is irrelevant now. What she DOES is who she is, and that's what informs YOU.

About her driving: Your mother is my worst nightmare, a demented elderly person who shouldn't be driving and has the capability to kill me and my loved ones as we come around the curve of that dark road. Her driving needs to stop immediately.

I hope you are looking at memory care homes. She'd be safer there and so would everyone else.

Good luck with this difficult problem!

lealonnie1 Jan 2023
Your mother is likely suffering from dementia, as her behavior is indicating. She should NOT be driving, meaning, you need to incapacitate her car stat. Take the spark plugs out, the battery, hide the keys, whatever, just so long as she cannot drive it. Otherwise, chances are good she'll kill herself or OTHERS while driving on dark mountain roads late at night!

When an elder has dementia, they lose their filters and appear racist. Correcting them doesn't get you anywhere, really, because their brains aren't working properly anymore. She's paranoid and you're the bad guy, which is typical dementia behavior; the one who does the MOST for the elder is the 'bad guy' most often. Naturally we're not 'doing anything' to warrant the angst, it's just the nature of the beast known as dementia. My mother was SO angry & said some of THE ugliest things to me, it was horrible.

The best thing you can do, aside from getting mom to her PCP for testing, is to educate yourself about dementia so you'll be aware of what's going on. I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

If she's living alone, now is a good time to figure out how to get her in-home caregivers or placed in Assisted Living/Memory Care AL. It's just too dangerous for her to be living alone as any number of things can go wrong now, unfortunately.

Best of luck.

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JoAnn29 Jan 2023
Your Mom should not be on her own. Everything you describe is someone suffering from a form of Dementia. And yes, as the daughter you get the brunt of her anger. She has short-term memory loss, she can't be reasoned with, she has lost her filter, she is self-centered and lacks empathy. And this will get worse as time goes on. If she has family where she is, she needs to see a Neurologist to determine that she has a Dementia and to declare her incompetent to make informed decisions. I hope she has assigned someone as POA for financial and medical it helps in getting her the help she needs. No one should consider taking her into their home. Eventually her care will be too much for any one person. It would be better, if she can afford it, to go to an AL or more so a MC facility. The earlier in their Dementia they are placed the easier it is for them in the longrun. They will except the MC as home.

Do not wait because Dementia is unpredictable. You never know what they will do. There is no rhyme or reason to it. She also should not be driving.

AnnReid Jan 2023
Please do what you can to help the grandchildren understand that this grandmother is very different from the grandmother that was theirs when they were children.

Sounds like you’re approaching the point where you’ll need to take away the car.

Physically, has she been tested for UTIs and cognitive status?

fluffy1966 Jan 2023
I am so regretful that the truth of the matter is that YOU must bear the brunt of your Mom's anger, frustration, and outbursts. That 'might' change a bit for the better as her cognitive skills further decline (which they will) but there's a chance that she could become "more abusive", too. I won't repeat what others in posts before this have so succinctly stated. As you as daughter are her 'safe target for rancor', then I surmise that you personally might NOT be the best to convince her to assign (and sign!) a Power of Attorney both for medical decisions and for handling her finances. Try to think hard on 'who' is the person (other sibling, doctor, Minister) who can cajole your mother into giving POA to another family member or trusted professional. THIS you must tackle first, above all else. Things are most likely going to get worse with your mother, perhaps even more uncooperative and more abusive, so please at once decide with whom she might most likely agree, and get those POAs in place. Next, she has to be gotten off the road. Besides the moral guilt you will feel if she kills someone else with her night driving, the family of the people in the other car that are killed or impaired: will sue you. My elderly uncle hit a family of 4 when he crossed over the dividing line while driving at night (which he promised he would not do). All four in the car opposite him were killed, and he himself also was killed. The family of those he killed sued my uncle's substantial Estate (as well they should have) and completed drained his estate of resources. In court, uncle's grown children were asked, "Did you know that your father was not capable of driving safely at night and in dangerous conditions"? And of course, the honest answer was "Yes, we knew". As this happened over 2 decades ago, in today's times, the grown children would probably also face "civil suits against themselves personally", beside the financial award to the family from my uncle's Estate. I hope I have gotten your attention with this nightmare. Take the keys, take the distributor cap off the car, have a mechanic tell you how best to disable the car. Your mother might scream and rant, might call the police to report you damaging her property, etc., but steel yourself against the rage that is coming, as your mother must not drive. Finally, begin in earnest to seek out AL or MC, as without her car, your mother is going to need a place to live that's safe for her and protects the rest of the world from being killed by her late night, curvy mountain driving. Sell her home and property to pay for her new residence (but that's assuming that the POA has been obtained and is 'in place') My heart goes out to you, as there's a long road ahead, but immediately take measures to disable her driving, as you will be doing yourself and the world such a great kindness and safety measure.
Endure Jan 2023
I 100% agree with all the information that you gave to Sabrina. Often times we don’t give the hard yet brutal truth. And dealing with dementia/ Alzheimer’s can be brutal and bring chaos, sadness and heart break. We make all the changes for their safety and do it all in the name of love even while shedding tears.
My mother had dementia and many years ago my moms doctor told me this: “you are the one with the sound mind, your are now playing the “ mom” role to her. Do whatever you need to do to protect her from herself!! I struggled through that because it was my 1st time dealing with it … but, boy oh boy did I learn quickly. Even with tears in my eyes❤️‍🩹.
ElizabethY Jan 2023
Hi,
Your mom likely has limited short term memory at this point, if any. While externally she may be able to carry on a conversation, internally she has lost the ability to timestamp and retain conversations or events--that's why there's a continual loop of neediness-she can't recall what's recently transpired.
She should see her provider, with the provider receiving a heads up about the behavioral changes. Your concerns regarding the driving should be included. You may have to tell white lies or fiblets to get your mom to see the doctor-sometimes telling them it's needed as part of a medicare wellness check helps.
At this point she should not be driving, and she should have additional care to ensure that she's safe, however that looks like. There are also some helpful forums over here: https://www.alzconnected.org/discussion.aspx?g=topics&f=151

This may help you:
https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

https://tamcummings.com/stages-of-dementia/
https://www.youtube.com/watch?v=awBm4S9NwJ0
https://www.youtube.com/watch?v=u5QMeQpkPhA
purplebadger Jan 2023
Your response is great! Very helpful information! My mom has lied, played mindgames and been VERY abusive to me for my entire life, so it was hard for me to realize when she was first getting dementia until it was fairly advanced and she had become physically abusive to me! People who don't understand or who weren't there to witness her behavior think I'm a bad daughter for going "no contact " with her! I made sure she got into an EXCELLENT care facility and went to see her a few times to make sure she was OK, but that's it! I wish I had a mom that I could have a relationship with, but I'm not going to be verbally abused and/or physically abused! I wish I could find an older lady that's lonely and spend time with her and do things for her, but I don't know how to go about doing that! 😕
LJBrodnax Jan 2023
Before reading any of the other comments, I wanted to reply, even though this may be repetitive to the other comments. I have definitely seen my father’s decline socially in groups as he is just not able to stay on topic and will insert a comment that has nothing to do with what people are talking about. He’s not abusive, but it brings the conversation to a halt and people just look at him like “what the hell is he talking about”? He is not interested or not able to be interested in what other people are talking about. He doesn’t ask them questions about them at all. My father lives in a Senior independent living facility but he is only able to do that because the VA is assisting us with caretakers (really, companions, and I know not everyone can afford that), but his companions  have become his best friends. Focusing on him, and listening to his repetitive stories is actually their job. Fortunately, I have found three very lovely ladies on my own, who have really bonded with him and him with them. He is so different when he’s around them versus me! He cuts up and makes jokes and overall is so much happier when he has them around than just me. I would like to think that I am as patient as a daughter can be in a situation like this. My father has lost a lot of his cognitive ability and most of his executive function. I no longer push him or invite him to be part of large groups. In larger groups he is awkward and mostly unsuccessful at participating. Even though he doesn’t get angry, at least that I can tell, he completely withdraws if the conversation is too active or not focused on him. He just cannot keep up. We don’t call his caretakers/companions “caretakers”. We call them “housekeepers” because he still has a bit of pride. But I will tell you that having someone (else) one-on-one to give her that focused attention, if you can find someone and afford it, may really be helpful!

Llamalover47 Jan 2023
Sabrina52: As you state in your profile that your mother suffers from dementia, she should NEVER be in control of a motor vehicle in daylight OR nighttime hours. Disable the auto by any means possible.

annemculver Jan 2023
Excellent answers here - I will add just one piece of advice: do NOT tolerate any abuse of any kind. Let her know you will leave whenever she targets you!

BuffyRoberts Jan 2023
People with dementia have a lot of negative thoughts going on in their head. They know something is not right and are trying to figure it out, while also trying to hide what is happening. In the meantime, they become very defensive, angry, scared, and frustrated. Their world has changed and they have lost much of their control, so instead try to force everyone to see things their way. Until your mom feels “safe” with you she will continue in her behaviors. If you can approach your mom with an attitude of love and wanting to help, she will relax a little at a time. You might say, “Mom, I know you are feeling frustrated with all of us. We love you very much and want you to be happy.” This is the most difficult part because you are feeling just the opposite of what you’re saying. I know because I’ve done this. Unfortunately, I did not have any training and did not do a good job in many ways. But, I did do one thing right. My mom was a life-long worrier. With dementia she worried constantly about everything. One day I said, “Mom, I will take care of everything.” She asked if I would really do that and I simply replied yes. She immediately felt better. After she passed I found a sticky note on the end table in her bedroom. On it she had written, “Buffy will take care of everything.” I believe she read that everyday and was able to get through her remaining days relatively free of worry. I know its not that simple but I bet you can think of one simple phrase that you both can relate to and repeat regularly to your mom. The only reason I write this is to alleviate some of the guilt you might have after she is gone.
Odaat59 Jan 2023
Your words helped me immensely. Our mom is the same, worried about everything, and you described her perfectly, always worried about not knowing anything, and our youngest sister, her full time caregiver, has told her NOT to worry about anything. She speaks for our mom, answers all questions, and it frustrates us two oldest so much, but your words helped me today, to think only of mom, and her poor head, in an uproar of confusion and worry…….and if it helps her to always say “I don’t have to know anything”, then so be it. I will get over my annoyance. Mom cannot even answer if she likes her lunch, or how pretty the day is, she says she doesn’t have to know anything. If that brings her peace, good.

It annoys me because our two youngest sisters began enabling our mom, when she was 55 ish, doing everything for her, from tech stuff, to yard work, to all the cooking, anything mom decided she was “too old and arthritic” to do, she left the daughter who never moved out of their home, to do it. And the third down daughter did any tasks, so mom wouldn’t have to learn as well, while me, oldest, and the second down daughter, shook our heads, and determined to never give up on life, the way mom was. She is now immobile and incontinent, cause she chose to not move anymore. And now she has no idea if she can even walk. There was no changing anything, even tho I was uncomfortable with how mom was being enabled. We had no idea how “young “ mom was, until we got older ourselves. And had arthritis that is helped by movement, exercise.

During a recent hospitalization for UTI and being weak, mom had to work with PT, who was reccing she go into an SNF, to get stronger, working with PT. Our sister never seriously even considered that option, cause mom just wants to be home, where they will have PT the bare minimum, just to “get thru it, get them off their back”. Mom kept asking me if “she knows how to walk”. I think PT asked her, and she doesn’t know the answer. I told mom I have not seen her walk alone, without hanging onto her daughter AND using the walker. It’s heart breaking, the power their caregiver, our sister, has over them, but our parents chose that, and there is no getting between them. We knew that long ago, but accepting it is tough. I got off track, long day. I love my parents very much, but they made their elder years much tougher, on ALL of their daughters, by giving all the power to the youngest, and she intends to kill herself, trying to take care of both of them, accepting help from no one else.

Dementia and Alzheimer’s sucks. I have learned the most heart breaking lessons from my parents, about how NOT to do my elder years, cause I could never turn one of our children into my personal 24/7 caregiver. But our two moved out, wisely.
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