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.
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.
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!
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
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?
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.
I feel your pain....I to am at the point of wanting no contact with my mother. I only speak to her when it's necessary.
My advice for you would be to distance yourself as much as possible, if she does want to start some thing - walk away. Definately tak
So sorry too that her driving must stop now for her safety and others on the road. Disable her car immediately and quietly report her condition to the DMV as an unsafe driver.
You mentioned, you weren’t sure how to find caretakers. I live in an area where we have a neighborhood Facebook page and I did a search on that page for caretakers and then I also posted that I was looking for a caretaker. As cruel as it sounds like she can be, there are people out there with experience with people such as your mother, and as long as they know ahead of time how she is, they are much better equipped to handle the situation than those of us who are related to them and have history with them. So anyway, that is how I found my caretakers. I wish you all the luck and love to get through this! It’s so hard!
Keep gatherings small.
A lot of people confuse things. It is difficult enough to keep track of 1 conversation let alone more and more people just add to the confusion.
You are the "bad guy" because you are a "safe person" for her. She knows that you will be there for her if she needs help. She knows that she can count on you. I know it is odd to be a "safe person" yet be the "bad guy" but it is like when you were a kid and did not get your way and you told mom.."you never let me do anything...I hate you!" You did not mean that...but you said it...and she still loved you.
At this point you need to get all paperwork in order so that you can make decision when the time comes.
You need to realize that she may not be safe alone and will need 24/7 supervision.
You may have to make decisions sooner rather than later about her safety.
And you can not let her dictate decisions about her safety and well being.
You certainly have your hands full. I don’t think she should be living at home anymore. Would she be willing to go tour facilities with you?
She could make friends and join in the activities at the assisted living or a memory care if that is necessary.
Best wishes to you.
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❤️🩹.
Ask the family physician for referrals to groups/organizations/etc. that can help you deal with this problem. You need to learn how to cope with this without driving yourself to mental and physical exhaustion. You also will need people who can assist so you have some time off.
Today, if I had not already gotten the POA and her health directive and will done, I would be S.O.L.! She gets harder to deal with by the day and is much, much worse than she was when we took care of the will and POA. No matter how demented someone gets, they usually feel that there is nothing wrong with them and that the problem is with everyone else. This is probably almost universal with dementia patients. Every day you, or she, puts off getting her will, health directive and POA done, the harder it will be to get it done and you might never get it done.
Bless those that work with a lot of dementia patients. I could not do it and when this ordeal with my mom is over, I don't ever want to be around anyone with dementia again as long as I live! That being said, I'll probably end up with it myself.
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.
* When you start to feel this way, reframe your thoughts (to shift your feelings).
Affirm (affirmations) that you are doing what is in her best interest and therefore, supporting her well-being" and her changing brain / chemistry. She can't help it and you can support her through these changes. And, you are.
* These decisions are not easy although they must be made.
* Support yourself as best you can and ask others to support you too. We can't get enough support in these situations.
* It is not unusual for some people to make racist remarks. You can google this and find out more - how the brain works / changes for these outbursts / inappropriate social behaviors, including profanity.
* It sounds to me that you are including her way too much and need to be very discerning in how / when / with who she is around / social situations. Limit to caregivers / volunteers / socialization visits (family / volunteer). I would recommend you do not take her out in public places as clearly she cannot handle it.
Gena / Touch Matters
Your Mom is aware enough that she knows something is wrong. However, she doesn't get the feedback or can rationalize what is going on. Even if you told her, her defense mechanism will probably kick in and thwart any of your good intentions.
I would try and get some companionship and home health care for her. Maybe bring her to your house for a visit (and only a visit), or arrange for people to check in with her. She needs to get some feedback on her mental condition and right now, she is still unsure of what is going on.
When was her last complete physical (including dentist and eyes and hearing aid?) Did she go by herself?
For instance, my mother got cataract surgery at least 2 years after she should have had it. She didn't realize what her doctor was saying and he thought she was totally in control of her brain. By the time she had cataract surgery, she lost the ability to remember entire paragraphs because it was such a strain to read the individual words. She could do crossword puzzles and balance her checkbook without an issue. She could hold a conversation with the doctor just fine. Anything she didn't understand, she just nodded her head.
Another instance, my Mom's dentist, who also happens to be my cousin, took me aside and told me that I needed to brush her teeth. He showed me her mouth and I was horrified at the condition of her gums. I then watched how she brushed her teeth. Basically, she didn't and her gums had receded enough to trap food in it. I took over and within 3 days, she noticed a big difference and was a happier person because she didn't smell (she didn't know that the foul odor that she was smelling came from her own mouth).
Until your Mom gets comfortable with what is happening with her brain and is willing to trust her life to others, anything with multiple people is uncomfortable since she, herself, is unsure of her behavior. I believe the belligerence and aggressiveness is a sign that she lacks self confidence.
As for you, if you brought her to your house for a visit and interacted with her daily, you would get a sense of what she is and is not capable of doing. If this is not reasonable, I suggest that you go see her for about 2 weeks on your own.
There is not much you can do about the racist comments. However, you can make her feel more comfortable in living and interacting with others. Don't try to correct her. I found it better to say "Hmmm, I don't remember it that way." The good news is that as my Mom became more comfortable with her loss of memory, the racist comments lessened.
Go with small groups. I found that no more than 10 is a nice round number. In my case, my Mom was attempting to keep track of all the conversations, and of course, she couldn't. You and I would just decide on one conversation and partake. However, in my Mom's case, her brain couldn't even think that was an alternative. Hence, she hated large gatherings. This was also compounded by the fact she wore hearing aids.
Last, counselling for you really helps because it will help you to deal with her different outbursts. She will remember some things and she will promptly forget others. It helps for you to just remember, this is not a reflection on you. BTW, you never know what they are going to remember and what they are not going to remember.
Good luck. This is a tough stage for both you and her. Also ensure she has all of her documents like title to the house, trusts, POA, etc. up-to-date. She may not have much longer before she is considered unable to make "sound" decisions.