New to all this. Help get me started to help my Mom

MomALZInfo

Hello all. As I said in the title - I pretty new to this. My Mom got diagnosed about 3 years ago. Is in independent living (in a facility with Assisted Living and Memory Care. Soon will have to move her to higher level care. She is fighting us kids on this - saying she will die 1st before she moves. But she is listneing to us to show the benefits and remind her of how many other family memebers had to move to higher level care and how happy they are/were. To get started - Questions: 1. It seems there is no such person as a Dementia/Alzheimer's dr. Our resource is just her primary dr - who has referred my Mom to "experts". These experts just seem to get upset my Mom and we have frankly stopped taking her to anyone other than her General Dr (who administers her meds). Is this generally how this works? Her Dementia/Alz medical resource is "just" her general dr?

MaggieCavaliere

Hey there! There absolutely Alzheimer’s specialists. They are typically neurologists that specialize in Alzheimer’s. We worked with a specialist at Columbia University in New York, and I can also confirm the folks at Mt. Sinai Icahn school of medicine are incredible experts and deeply entrenched in research. It’s helpful to talk with them if you’re looking to better understand and track her coginitive decline, as well as start any Alz-specific meds. Typically the earlier stages the more helpful the meds are.

I’m sorry you’re going through this, and I can empathize with both you and your mom. Everything in their world is changing, so more change can just feel too much. Assuring her that moving facilities ensures she gets the care she needs and deserves can help reinforce that yes this situation sucks, but these suggestions for the move are because you love her. Hang in there, and I hope this helps. 💛

Emily 123

Hi there,

No-it's not unusual, if the person's in relative good health. Generally the person's PCP will refer them to a neurologist, a neuropsychiatrist, or a geriatric psychiatrist for testing to determine if there is dementia, and they may be able to diagnose which type. They can prescribe medications, but then the patient may often be handed back to the PCP if no new symptoms need managed. Because Alzheimer's is a progressive terminal disease where there are no medications or procedures that stop it, straightforward medical management can be overseen by their PCP. The Alzheimer's meds most commonly in use may allow the person to function at a certain level for longer. Sometimes additional meds may be needed to help manage any symptoms of the disease which occur. In that case the PCP may confer with the specialist again for medication management.

It may be that the disease is causing your mother to experience anosognosia, which is the inability to recognize that she's having problems. In that case, it will prevent her from recognizing the need for higher care too. The more you push, the more she'll dig her heels in, because she thinks she's fine and that you're wrong. (And no amount of you telling her about what you've seen will convince her...because she doesn't remember those things. Yay Alzheimer's) It may be that hearing she has dementia is overwhelming for her and it might be easier all around to not bring up her diagnosis again. I think it would be very scary to hear even once. My mother listened to all the neuropsychiatrist had to say, and had forgotten it by the time we'd gotten to the parking lot and that was that. If we talk about memory at all, we might say she just gets a little 'foggy'. You might get more traction by not bringing up her Alzheimer's or any memory issues as a reason to move.