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We had a neurologist appointment with a new doctor yesterday. I didn’t tell my mother where we were going only that it was a doctor’s appointment and a checkup. It was for her dementia which she is in complete denial that anything is wrong. She has always been difficult to deal with and that has not changed.



She was nice to the doctor, of course failed all his questions. However, she was extremely angry when we left. Without going into detail, I can tell you she blew up at us when we got home, and it was a horrible evening.



My question is, did you ever run into problems getting your LO to neurology appointments and if so how did you manage?



We have four more scheduled, different tests and then the results. I have no idea how I can get her to them. I hope she forgets, but it seems things that are important to her stick.
She actually recalled the only two other times I got her in front of a neurologist.

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Well, I am one of these people that don't drag my LO with dementia to a neurologist, as I feel that the tests are a waste of time & money. They have no clue what to do either, just say "Come back in 6 months" or whatever.

My stepmother is in MC, she has FTD, my brother & I watch her closely and make changes as needed, doesn't make any difference what level she is at, as there are no meds to help her.

She started to act out so we increased her anxiety meds, she is stable for the time being, that could change tomorrow, we address each issue as it comes up.

Your mother failed their simple tests, so that is the answer she has dementia, a progressive disease that has no cure.

I am sorry that you are having to deal with this, read around the net, read what posters have to say here, strap yourself in you are in for one heck of a ride.
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lealonnie1 Feb 27, 2024
Agreed 100%. The neurologist had NO helpful ideas or meds for my mother with dementia and neuropathy, yet insisted I drive her downtown Denver for a follow up! I said WHAT FOR? She looked at me like I had 3 heads 🤣
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Thank you for all the responses. Yes, most of what you’ve all commented I have already thought. Guess some times I’m grasping for a better answer. While at the same time I know there isn’t one.
I thought if anything we would get a specific diagnosis, and that may be helpful or maybe even necessary when it comes time to place her, also possibly in getting assistance.
They don’t have anything saved for any type of care or any assets. Neither myself or my brothers have the funds for it either.

I have friends that have dealt with a LO with dementia, and while I was empathetic, I’ve found you really have NO idea until you are in the middle of it. It is an EVIL disease!
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MyNameIsTrouble Feb 27, 2024
"Guess some times I’m grasping for a better answer."

We all do at some point when we are caring for a LO with dementia. Hope springs eternal when dealing with this. At least until it doesn't.

"It is an EVIL disease!"

1000000 thumbs up.

"I thought if anything we would get a specific diagnosis, and that may be helpful or maybe even necessary when it comes time to place her,..."

Much of what is required depends greatly on the facility. Many places only require it states the term DEMENTIA be the diagnosis in the medical records. The actual disease type isn't required -- especially since the type of dementia is so very difficult for even the medical community to identify. Because symptoms of types overlap, without tests to definitively indicate what type, saying IT is THIS is just a lot of guessing. Also, Medicaid will do their own evaluation for both medical and financial needs as well.
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My mom refused to go to an appointment once, she physically fought us. We let her stay home. Basically, next time don't tell her it's an appointment just tell her your going out. However, if you chose to continue to go the these appointments maybe speak to her PCP about prescribing a sedative to relax her maybe she is anxious or scared and just doesn't know to to deal with it. Also, these episodes could get worse in time.
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There's not much you can do to 'help' your mother--dementia is a really personal disease, as you are finding out.

What's the goal here? To have her properly dxed so you can place her in the proper setting for care, or are you just doing this to see what level of dementia she is experiencing for your own knowledge?

I doubt anyone has gone willingly to be tested for dementia--my late MIL had her cog eval done in her home and she was pretty mad about it. B/C as it turned out, she was quite far gone and this just substantiated the kids' belief she was 'worse' than she let on.

Her test was to determine the level of care she would require in an ALF.

I hope you can divert your mom's attention away from knowing she's having cognition tests--however you did it the first time, do that again.

Worst case, I think you could arrange to have the testing done at home, but I have no idea how you'd go about this, unless, as I said before, she is being placed in a care center.

I'm sorry you're going through this. It's pretty awful.
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You may need to discuss this with her doctor and transport by some sort of ambulance pickup may be needed.
I don't understand why they aren't doing their testing all at once, because denial is common, and it is difficult to get people into testing.

If an admission to hospital is required, that is to say if there is no competency left here to speak of, then this may be needed to a neuro psyc unit. They are often much more amenable to strangers than to family.

The truth is that you, while you may not know the type, do know there is dementia here. And likely understand that there is little to be done about it.

Again, discuss this with the doctors. Tell them that your experience of this first visit makes you know you will not get her into another.
You can also be honest with your Mom to tell her that without diagnosis you CANNOT CONTINUE IN HER CARE and she will need to go to a facility for care. This "threat" may work, especially if you at all mean it.
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Just tell her, “come on get your things it’s time for our drive”.
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When someone has any of the dementias(which your mother obviously does)I believe that it's best to only take them to the appointments that are ABSOLUTLEY necessary.
So I will ask you....Are these neurologist appointments ABSOLUTELY necessary? You already know that your mother has dementia, and you already know that there is no cure and no magic pill to prevent, stop, or slow it down, so why put her and you through the aggravation of it all? It makes no sense.
With a loved one with dementia you have to pick your battles wisely, and I'm just not sure dragging her to any doctor at this point is worth the battle.
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I gave up on neurology appts , LO’s got too agitated . LO’s insisted there was nothing wrong . They were in AL with vascular dementia ( possibly mixed dementia ) . Primary doc treated them for depression/anxiety with meds.
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GMJock, for folks without assets or savings, there is Long Term Care Medicaid.

Start looking into the various Medicaid programs in mom's state.
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All the neurologist did was have Mom draw a clock face at every appointment. Mom would practice drawing clocks 4 days before her visits. It was very stressful for her.
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