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.
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!
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.
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.
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?
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❤️🩹.
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
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.