Hi community,My mom had a MoCA test in 2022 and scored 19/30 which is indicative of mild dementia. She has noticeable short term memory lapses and some minor reasoning issues and we went back for another test last week. She scored 14/30 which is indicative of moderate dementia.
however, the conditions of the testing environment were very stressful and I know her well enough to know that when she feels judged she gets anxious and doesn’t perform well. She was visibly upset during the testing and I told the assessor this.
The assessor was very cold harsh and emotionless. And not a nurse or doctor.
after the test the nurse practitioner came in and was also harsh and cold and emotionless and told my mom she is diagnosed as moderate dementia, could no longer drive and needed to be admitted to assisted living.
here are my questions:1. can a nurse practitioner diagnose dementia from a screening test like MoCA?2. Is it ethical or legal for an assessment place that is part of an assisted living and memory care facility to be administering this test when there is a clear conflict of interest ?3. Her Dr is under the same system. We want a second option and we want to learn more about where there are alternative approaches: a) a med review of her meds, b) further assessment to understand what type of cognitive decline she has, c) meds that stall progression, d) OT to improve (she has already improved in the last few months while living w me - not denying that she has some decline but it seems situational to me) alternative ways to support here without shoving her into memory care which frankly she doesn’t need at this time
what are your experiences and ideas for what I / we should do?
she is cooperative and we are working together collaboratively
thank you!
My dad had dementia and he did better in an environment that he was eating properly, didn't have any responsibilities and getting his meds consistently with daily enrichment activities.
I was told by a hospitalist that he needed memory care, no he didn't. He needed assistance and wasn't ready for memory care in his dementia journey, he never needed it, he died first.
You know your mom better than any doctor does or ever will, you need to advocate for her, do what you think is in her best interest and get educated on dementia.
There is a saying, "When you've met 1 person with dementia, you've met 1 person with dementia". It is as individual as can be, no rhyme or reason to what symptoms or struggles will be present when, one day can feel like 10 because she is all over the board with it, tomorrow can be better than today or she can decline only to rebound and decline further next day and rebound higher tomorrow, that's why your advocacy is so important. You will know how to help her because you live it with her daily.
NOBODY except a judge can make your mom do anything you or she doesn't want. She has rights and until those are removed by a legal judgment, you can help her make all the decisions for her life. Nobody can make you place her!
Your mom would benefit from AL, as proven by living with you in her own personal assisted living situation, she may or may not ever need memory care, that will be completely up to you, because she won't be able to make or participate in the decision when/if the time comes, you won't even recognize her at that point. Don't close and lock any options, you have no idea what could be coming and the choices you could face will be the least bad of the awful choices you have. It's a reality with dementia.
Keep advocating and learning and you will be the best blessing anyone diagnosed with dementia could hope for.
Great big warm hug! The beginning is always so very hard, you don't even know what you don't know and it is a roller-coaster ride. You are doing great!
Big hugs back to you. xo
Thank you again for sharing your stories!
You sound like you have a very good plan and I hope it all works out for you and your mom. Take care.
People with dementia get stressed easily and develop anxiety due to the stress (and other things). If you think she's stressed by testing, a cold environment and so on, consider what regular life is like for dementia patients. They are judged all the time. Example: Mom is anxious as the cashier is thinking, Why is this woman taking so long to find the right credit card? She rolls her eyes at mom, who feels judged and is judged, but mom doesn't understand why. She becomes stressed, agitated and has a meltdown in Walmart. Or, the neighbors inform Mom that they've warned her to keep her dog out of their yard. They won't put up with it anymore, and she's thinking, They never told me that! She's judged, she's stressed, she's confused.
In her real life, you can't predict or solve the things she will face. No point in pretending you can. Those tests were nothing in terms of stress! She may have improved in the last months with you, but it won't last. It's not situational. She will decline. She'll feel stress. You'll feel stress.
I shoved my beloved husband into memory care when he became double incontinent and I was finding smelly surprises all over the house. He took his poop out of the toilet; he carefully and artistically placed used toilet paper under our pillows, under the bed, behind the drapery and other creative places. He hid a butcher knife under the couch cushions. He managed to get out of our house that I was sure was secured and ended up in a hospital many miles away as a John Doe. I had 3 trackers on him, and he had IDs in his pockets, but the Good Samaritans who found him didn't see those because he'd chewed them up and left them home. He also ate napkins.
He fell a lot. Broke some bones. Blood from his wounds ran down the wall in rivulets, seeping into the baseboard, where after some hours or days it stank like rotten meat. He peed in the dishwasher, on the refrigerator and our kitchen table, in his shoe, on various carpets, in the bathtub, chair cushions and more. He panicked in our car while I was driving and opened his door while we were in motion. I'd had no idea he'd do that. After that I needed hired help to take him anywhere in the car. He couldn't undo his pants alone so I took him into a restroom, where my help was unwelcome. He screamed and screamed; fortunately it was at the doctor's office and they understood.
He couldn't walk or speak understandably, feed, dress, toilet, shave, brush teeth, bathe or keep himself clean. Couldn't get in and out of bed alone. Fell out of it. Cried when he tried to dress himself because he put both legs into one leg of his pants, couldn't walk, didn't know why. Of course I always had to dress him after that, and it could take an hour and a half or more because he didn't know what getting dressed was, and it hurt, or he felt scared. He is a combat vet with 2 tours of duty in Vietnam, a war hero who never flinched though he most certainly must have felt fear then. Now often fearful. BTW, his dementia, as determined by the U.S. government, was caused by service injuries and Agent Orange.
Fortunately, the memory care I shoved him into after taking care of him alone at home for 3 years has aides who love him. They gave him an affectionate nickname, kiss him on the top of his head when he's scared while they're wheeling him to the shower, and feed him when he can't feed himself. Today an aide's children were there to interact with the residents. One of them helped make cupcakes for their lunch. I'm there almost every day and look forward to time with my dear life companion and new friends in a good place. He was lonely at home, despite caregivers and me.
Your mom may never get to shoving stage, but you need to be ready. It happens fast.
FYI, I'm an elderly Navy wife dementia caregiver X 4 - parents, a relative and now DH.
Of course by now she has moderate dementia, as dementia never gets better or stands still for long but only continues to get worse and worse, and you being in denial about that won't help anyone especially your mom.
So what you need to do now is educate yourself more about this horrific disease so you are better prepared for what is yet to come, and quit being in denial.
And of course your mom shouldn't be driving anymore as anyone driving with dementia is no different than someone driving drunk or high on drugs.
And while assisted living was perhaps recommended for your mom, I can only guess that that means that your mom should no longer be living by herself as that is very dangerous for someone with a broken brain, so time for the family to come up with a plan to make sure that she is kept safe and looked after as she will only continue to get worse.
She definitely should not be driving anymore and does not live alone. That being said, no matter what her test score is on the MoCA or what any healthcare professional says, NO ONE can force her into assisted living if she's not living alone and is receiving adequate caregiving support. She lives with you and you're providing it.
Most definitely the nurse practitioner if and other staff administering the testing have a conflict of interest if they're paycheck comes from an AL facility. So tell these people they can go pound sand.
Then call your mother's doctor and have her re-tested in his office if it will ease your mind.
I would demand a full neuro-psyc workup.
Anxiety contributed to failure in ANY testing of ANY kind throughout our lives. It can markedly change things.
It is time to lay your suspicions clearly on the table and tell THIS medical group that there is a conflict of interest her, and that you do not trust a diagnosis via a NP. Were this a way to diagnose dementia we could all do it ourselves in one half hour via MoCa and SLUMS testing on youtube. Let them know that you are requesting a neuro-psyc MD consult.
I didn't "shove her" into Memory Care Assisted Living......many elders go from regular AL to MC once their decline is significant enough to where it's warranted. Don't stigmatize something you yourself may need for your mom one day. Dementia can get quite ugly quite fast, and I hope you don't get to see that first hand like most of us do.
Trying to prolong ones journey with dementia by using drugs, none of which are proven to work anyway, is cruel and unusual punishment imo, as one who's witnessed The Long Goodbye for 6+ years. Death is a blessed relief from the torture of dementia, in reality. My mother is finally at perfect peace now, thank God.
No person with dementia should be driving, under ANY circumstances, period.
You can get as many opinions as you'd like, and put mom through the testing process each time. A neurologist will put her through many long hours of thorough testing to see if s/he can pinpoint the type of dementia mom has, if you'd like to go that route.
I suggest you get the book Understanding the Dementia Experience by Jennifer Ghent-Fuller so you can learn about dementia and how to deal with mom.
Good luck to you.
Lea, as one who had to "shove" my DH into memory care, and who now "shoves" him around in a wheelchair there almost every day alongside many other spouses doing the same for their loved ones, I'm so glad you said that. Methinks OP has a rough road ahead, but I'm proud of myself for not telling her to "shove" it.
OMG the things I read on here....
You should know mom better than anyone but keep in mind, they know about Dementia. It's time to make sure that someone has POA before she gets worse,also a joint bank account so you can pay her bills. Confusion is a major issue with dementia. I know my mom was having difficulty with the phone and remote, actually confused them at times. She would throw out bills but keep the junk mail. She claimed she had an appointment but it was at a different location. She knew I was on my way over to fix her computer and 5 minutes later, she was gone! She left her cell phone behind and the police were able to find out where she went from her last call. That's when she got placed, for her own safety. It can come on so fast and only the people who are close to them can notice it,don't listen to those who aren't close to her,family are usually in denial. Nobody can tell you to place your mom,that's your decision. Just make sure she's safe and not wandering. If you can't care for her,admit it and do what you have to do, no guilt. Being a caregiver is the most stressful thing ever and burnout sets in and makes us feel impatient and angry. We can only do so much. Good journey