Is this normal decline for a dementia patient?

Wow, it sounds like you've found a gem of a doctor!

Good advice all around, especially about counseling. Hope you keep us updated!

Well - we got a not-surprising diagnosis of Alzheimer's. The neurologist staged her at early- to mid-stage, leaning more toward mid-stage. He, like several of you here, felt that it was unusual that she had such marked decline so rapidly in so many areas. He indicated that typically, the later in life Alzheimer's begins, the slower it progresses, so rapid changes at 83 years old would be surprising. He is going to recommend that her physician do a more thorough workup with an eye toward discovering TIAs.

He emphasized that she has it in her control to play an active role in slowing the disease down. He commended her on her efforts to walk every day and suggested she participate in the daily exercise classes at her AL. She believes her own exercise program is better than theirs even though she was unaware that they have exercise classes.

He also emphasized the importance of good nutrition. I gave up trying to discuss this with her awhile back because it aggravated her and frustrated me to try to convince her that good nutrition is more than just not eating sweets. He told her it is good to minimize sweets, but that she also needs to be putting nutrients into her body as well so she needs to eat each meal they serve at AL so she can get a balanced diet. She's very paranoid about gaining weight, so she agreed to drink an Ensure every day and go to at least two meals.

Lastly, he encouraged her to socialize. She tends to think she is better than everyone else at the AL, thinks some of the other residents are out to get her, and that their activities are silly, so he suggested she just go and watch and chuckle to herself about how they are making fools of themselves.

I could tell he wasn't hearing anything he had not already heard, and had figured out ways to get the patients to look at the things they need to do in a different way. That was pretty cool watching him coax her into agreement.

After we left, I called him back to discuss how her NPD plays into her Alzheimer's. NPD is a big hot button for her so I just didn't want to try to discuss it with her present. He said that as the disease progresses, I will see less and less of the NPD, but that because NPD is a lifelong behavioral disorder and basically untreatable because the patient usually doesn't - by definition - acknowledge a problem, the NPD behaviors become so deeply entrenched that they persist for awhile even as the memory fails. That made a lot of sense in terms of what I see - whereas her narcissism used to be wielded like a well-oiled weapon, it is becoming clumsy and disorganized so that it's pretty easy to see it coming. He suggested that I wouldn't be foolish to get into counseling myself, given the history of abuse via the NPD and the future of caring for her. He said he often suggests caregivers join a support group, if not seek counseling, because of the rigors and emotional minefields of caring for LO's with dementia, but with abuse it is definitely a good idea. I had already been considering that so I'm going to go ahead and pursue it. I worked through so much of the past heartache on my own, but I did it by going no contact with her for years at a time and while I know it's still an option, I would prefer not to do that if I can protect myself with a strategy.

I hope you get some answers at today's appointment!

Just want to clarify if she's been checked for other non-cognitive/neuro issues such as dehydration, vitamin deficiency, diabetes, high blood pressure, thyroid function, and over- or under-medicating? All of these can created the symptoms you are describing and can be tested for, and have a treatment.

If your mother is in charge of dispensing any medication to herself (in particular for pain or thyroid) incorrectly dosing herself can be a very easily happen at her age and with her issues.

Mgm, I need to tell you that at some point, my mom had a stroke that did not show up on an MRI immediately. So yes, I'm glad you are seeing the neuro on Monday!

((((Hugs))))))

MGM, any news on mom today?

I hope your mother will be OK. I don’t think it’s normal at all to decline that fast in 1 week. Anytime I’ve seen similar things, it’s because something happened.

Only the facility knows: but here’s what I think: since you left for 1 week, no one was there to keep an eye on the staff, to make sure they’re not neglecting your mother (there are many ways to neglect and work incompetently).

I think the staff did something wrong while you were gone. Not your fault at all: you needed a break. But when no one watches, staff -sometimes (I’m not saying all staff are like this) - just don’t care.

(It happens also with in-home caregivers. One must keep an eye out on the caregivers.)

I hope it’s reversible.

Just an add to Barb's description of dementia types. My father's vascular dementia was initially a slow decline of some functions. When first examined by a doctor, Dad had 6 areas in his brain that showed signs of a small stroke or TIA. Dad would have several additional TIAs; some would be immediately followed by a noticable loss of function (like unable to keep his balance or an inability to take a step backwards), some would not. If your mother doesn't have a UTI or some other infection then I would say from my experience it sounds like a TIA.

You didn't cause it. You could not have prevented it. If your mother needs more comforting you may be able to provide some. My father developed panic attacks which I attempted to comfort him through. You will be unable to provide all the comfort your mother will need. You will need to help her find comfort from her AL, that she has friends and attendants so she's not alone and can get help. You need to maintain your health in order to give your mother anything. Don't feel guilty about caring for yourself.

Point of information; Alzheimer's is a slow steady decline, whereas Vascular Dementia, which my mom had, is a series of drops, many of them sudden.

Glad you are getting her checked out today!

What do you mean by NPD? Narcissistic personality disorder? If so, it will have nothing to do with dementia. The symptoms you describe seem to be from an early stage of dementia. They usually present themselves in an irregular manner.
There is no hope that the dementia will disappear. Once it begins, it will progress steadily. How fast? nobody knows.

It's probably in the normal range but way out on the edge to have such a marked decline. It seems to be more a slow steady thing with infrequent dips (at least with my mom). I often feel like, hmm, she can't do x, y and z anymore but it's mostly slowish to get there.

Good ideas to get her checked out a little better to see if there are any physical reasons for this. Maybe even ask for blood work? Maybe something's out of whack.

While it does put pressure on you that they are saying it's because you were away, you are still going to need to take breaks. She's going to decline regardless.

Good luck.

Good ideas Barb. Thanks!

I would start by getting her tested for a UTI, which can cause sudden and dramatic changes like this in elders.

I'd also consider the possibility that she might have had a stroke that wasn't "big" enough to be noticed.

Get in touch with her doctor tomorrow first thing and have her seen. If they put you off, take her to an Urgent Care center.