Anxious about future, any experience with this?

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Courage726 Asked October 2021

Anxious about future, any experience with this?

My dad is in an AL facility. We moved him there after my mom, his primary caretaker, died unexpectedly in February. My mom told us for years that his doctor suspected he has dementia. I took him to a GP right before my mom passed and my dad didn’t pass the minicog. He couldn’t draw the clock. We explained all this to the AL facility when we applied two weeks later.
My dad has very little short-term memory. He asks the same questions over and over. His personality has started to change and now he’s saying inappropriate things about the workers (they have nice legs and other inappropriate comments about body parts). I never heard him say things like this to anyone before. The AL head nurse said because dad only has “worsening cognitive decline” in his file and not a dementia diagnosis by a neurologist that they have to treat it like he is saying inappropriate things on purpose. She did say he’s shown some cognitive decline, but when given a minicog there she said he passed.
They are having another psych NP see him next week and we are trying to get a referral for a neurologist.
The nurse said he would be good for memory care if we can get a diagnosis but if not then they will search for places that take seniors with behavior issues. I’m totally scared since my dad just got comfortable there.
Anyone have experience with this? They put him on an antipsychotic drug to help with the inappropriate comments but it’s not working.
He also has incontinence and wears adult diapers. Sometimes he forgets that he uses a diaper and tries to go to the bathroom. It is particularly dangerous since he is in a wheelchair and can’t walk or transition by himself.

Alzheimer's & Dementia Assisted Living Cognitive Decline Memory Care

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score 1 · Answer 1

I agree with other posters. He’s not psychotic so the anti psychotic drugs are wholly inappropriate and will probably be bad news. My experience;

My mom is home with care, with late stage dementia and all the things that come with it. The hospice drugs and anti phycotics either made things like anxiety much much worse or put her in a stupor. Did a lot of research and found CBD/THC is helping immensely. She’s still got dementia of course but she’s MUCH better off than on the antipsychotics. Do your own research-not sure where you live but if you can get CBD/THC you might want to give it a try. Not sure how CBD/THC works in memory care but I’m not a fan of the ‘off label’ pharmaceuticals and what I’ve seen them do to my mom and I’ve read I’m not alone. Just my experience in seeing a huge difference between the two. Thoughts are with you as you navigate.

Google the Nova show that recently aired on THC.

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score 1 · Answer 2

Courage726: Imho, it does appear that your father may require an MC facility and I did see your update from one hour ago wherein you stated that you are waiting on the dx from the neurology group.

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score 1 · Answer 3

Thanks to everyone for your help. We have testing scheduled with a neurology group that specializes in memory and movement issues. Hoping we get the diagnosis and then into a good memory care.

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score 1 · Answer 4

Get your dad evaluated by a geriatric psychiatrist as well as a neurologist. Between the 2 doctors, they can evaluate, diagnose, and treat his problems. Lean on the AL to allow your father to remain until after his evaluations. Then, be prepared for him to move to memory care unit.

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Thank you for this! I’ll look into the geri psy. The director of the AL is being very helpful and said we have some leeway to get the testing/see a neurologist.

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score 0 · Answer 5

Who approved the antipsychotic drug? It does not seem appropriate. Have you considered a Nursing Home?

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We are looking into memory care. We were trusting the doctor’s judgment about the drug at the time.

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score 2 · Answer 6

It sounds like your dad could have what my dad has. Vascular gait Apraxia? Can't walk, cognitive skills declined & incontinence. He also has swallowing difficulties so I have to feed him 9n soft foods. Dad was seen by a neurologist due to his gait & cognitive decline. He had a scan & was diagnosed with VGA.

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I am looking this up now, thank you!

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score 1 · Answer 7

My 97 yr old Dad says inappropriate things but Caregivers should understand that Seniors do that when they have dementia.

Also, Care Homes always give out too many meds everyone and says it's because they're depressed, have anxiety or act inappropriate, etc, ect but the real reason is to make them more compliant and zombie like so it makes it easier on the Nurses and Aides.

Those meds can really mess up a person's brain especially when they already h e memory problems. The meds can also make them suicidal.
Prayers

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My mom is home with care, with late stage dementia and all the things that come with it. The hospice drugs and anti phycotics either made things like anxiety much much worse or put her in a stupor. Did a lot of research and found CBD/THC is helping immensely. She’s still got dementia of course but she’s MUCH better off than on the antipsychotics. Do your own research-not sure where you live but if you can get CBD/THC you might want to give it a try. Not sure how CBD/THC works in memory care but I’m not a fan of the ‘off label’ pharmaceuticals and what I’ve seen them do to my mom and I’ve read I’m not alone. Just my experience in seeing a huge difference between the two. Thoughts are with you as you navigate.

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score 1 · Answer 8

OP replied to a post that they have been able to get an apt with a neurologist.

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score 1 · Answer 9

Teepa Snow is a great resource for understanding dementia. She is an expert in the field

https://www.youtube.com/watch?v=0BlZF_4EKp4

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score 0 · Answer 10

STOP...this is a serious red flag. All of your fathers behaviors are consistent with dementia and completely normal. Antipsychotic drugs are NOT appropriate.

https://www.aarp.org/aarp-foundation/our-work/legal-advocacy/info-2018/antipsychotic-drug-dementia-nursing-facilities.html

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Thank you!

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score 2 · Answer 11

Yes, definitely get to a neurologist! They’ll be able to give the diagnosis. If they offer a neuropsych exam, consider doing it. It takes several hours to do because it’s thorough, and you’ll walk away with a great understanding of what the probable cause is (Alzheimer’s vs another dementia type) and what his weaknesses are.

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I got an apt for him! We were waiting for the doctors that visit the AL facility to give us referral but I found a group of neurologists that specialize in memory and movement issues that don’t require a referral. He actually had two appointments- one for testing and a second with the doctor to give a diagnosis.
Thank you for your help!

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score 1 · Answer 12

Who in the AL gave him the test? Because I don't think a GP, RN or a NP are qualified to determine if Dad has a Dementia. You need to get him to a Neurologist. Write down what you and the AL have seen and make sure the doctor gets it. Other tests need to be run. Not sure if its an MRI or CAT scan that determines that the brain shows signs of Dementia. He needs labs to see if there is any physical cause.

I would say that Dad has lost his filter. What comes into his head comes out his mouth. He probably should be in MC. An AL can only do so much.

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This is super helpful. I’m calling a neurologist Monday and will start preparing a document with what we’ve seen.

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score 3 · Answer 13

hugs!! poor you. poor father.

“They put him on an antipsychotic drug to help with the inappropriate comments but it’s not working.”

of course it’ll not work.
definitely take him off it!!

hug.

he doesn’t have psychosis.

he probably does indeed have dementia, and sometimes people do/say things out of character.

no drug works against dementia.

it’s simply an unfortunate illness/deterioration of the brain.

i really hope you can find a good solution/good place for him (whether it’s there, or elsewhere).

hug!! courage!!

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Thank you so much for the virtual hug and support! Thank God for this community.

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score 2 · Answer 14

I'm astounded that someone would put him on psychotropic medications for typical dementia behavior.

Get another doctor, and tell them to stop drugging him.

Find a good memory care. They should have an on-staff nurse who'll visit Dad, give him some cognitive testing and decide if he's a good fit (and he will be). I never had any nursing home ask if we had a diagnosis of dementia from a doctor (although we did) -- the MC decided.

Get him out of AL because he's way beyond that anyway, and get him to a memory care facility that can care for him through end of life.

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Thank you so much for for this info and advice. I am researching memory care places in his area now.

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score 1 · Answer 15

Hi Courage726 it's me again.
I want to correct a part of my earlier post. I meant that dementia is not a mental illness. I wrote disease but meant illness.

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score 2 · Answer 16

It sounds like his needs are past what Assisted Living can provide, if he can't transfer from wheelchair to toilet. Can he get in and out of bed?

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No, not alone. They
knew this before he got there and they still agreed to take him. He can stand but needs someone with him for all transfers.

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score 1 · Answer 17

Anti psychotic drugs for dementia are just medicinal restraints. Most care facilities will go directly to them until/unless the person in charge (maybe you) stops it. A psychologist wanted to put my mom on depakote. I said NO.
Dementia isn't a mental disease.
Drug free behavior management is the best gig in most cases.
Additionally, adult pull-ups work well for dementia folks cause they work like underwear and are less expensive overall due to use of a toilet.
You are your dad's strongest advocate so keep asking questions. Read, research and say NO, cause you can always change it to yes.

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Thank you! This is really helpful. He has pull ups and diapers. They asked for both.
I’m just so nervous about getting the diagnosis and finding a good place because my sister and I thought this place was good for him at first.

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score 2 · Answer 18

Anti-psychotic drugs because someone makes inappropriate comments.
This should raise a serious red flag for you about the competency of your father's health care providers.
The AL people want him out of their facility. That's why they're pushing a need for memory care or trying to find a facility for seniors with behavioral problems.
There is always going to be some kind of behavioral issues when there's dementia or cognitive decline. The people at the AL know this too.

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The more I learn the more I realize he might be better in a place that has experience with dementia but I don’t know how to get him in memory care if we don’t get the diagnosis. It’s very frustrating that they are saying he passed the minicog. I am also trying to find a neurologist besides the referral they give us for a second opinion (or in the event they don’t refer one).

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Anxious about future, any experience with this?

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