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mgmbaker Asked April 2022

Is this normal decline for a dementia patient?

For background: My mom has an as-of-yet unspecified diagnosis of dementia (I'm hopeful we get the dx on Monday at her next neuro appointment). I am her only child and we are the last of our family. She has NPD as well as dementia, but otherwise she is extremely healthy. She lives in a very nice ALF. When things are normal, I see her 2-10 hours during the week depending on appointments, and half a day Saturday and half a day Sunday.


So I didn't see my mom for one full week while I was supposed to be traveling for work. I wound up not needing to go at the last minute, but took the time anyway as some respite from my mom's ongoing needs.


When I went to pick her up on the day I was to return, I was very surprised to see some significant changes in her: 1) She didn't recognize the car when I pulled up. 2) This normally put-together woman was waiting in the common area for me - barefooted and ready to go. 3) She has always walked miles every day, and even as recently as three weeks ago was walking several laps a day around the outside of her ALF - was very unsteady on her feet. 4) At lunch, she couldn't manage her silverware - she kept using the wrong pieces for the wrong purposes but she wouldn't let me help her either. When her friend went to see her yesterday, she found her curled up in a fetal position crying for me. Her room (she's very proud that she can still keep her own room and it is always pristine) was unkempt. They went out to lunch and she was startling badly by loud noises. She took a light fall on the steps.


I see small differences all the time, but this is the first time I've seen so many changes in such a short time (call it two weeks). Is this typical to see changes come in tidal waves? The ED at the ALF told me she felt the changes were due to her missing me during the week I was presumably out of town. Is it really possible that one single event can cause that much decline? No pressure - eesh! If it is possible, is it also possible the changes will correct themselves when their normal routine is restored?


The only part of this that feels like it might be her NPD is the fact that every day she is asking staff at her ALF to call or text me to ask me to come see her, whereas I've never seen her every day. Even that though, probably relates to her thinking she hasn't seen me in months because she doesn't remember seeing me on Saturday.

BarbBrooklyn May 2022
Wow, it sounds like you've found a gem of a doctor!

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

mgmbaker May 2022
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.

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BarbBrooklyn May 2022
I hope you get some answers at today's appointment!

Geaton777 Apr 2022
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.
mgmbaker May 2022
Thankfully, Mom's medicine is dispensed by her AL nurse. She's unhappy about that and keeps saying she's going to tell them she wants to take care of her own medication, but that will be a discussion for another day.

In looking at this list you provided, I can see that possibly dehydration or vitamin deficiency are possibilities - she's had very recent labwork and checkups that should have revealed the other possibilities. However, she has been "off her feed" for a few weeks as well. I know that when I reconnected with her about three years ago, she was barely eating (she has never known how to cook) and was very frail and her brain was scattered even then. I started preparing brain-health-rich foods for her and she rallied a little after that. They don't MAKE her eat at AL, although they do encourage, tempt, and cajole when they have someone who isn't eating well.
BarbBrooklyn Apr 2022
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))))))

BarbBrooklyn Apr 2022
MGM, any news on mom today?
mgmbaker Apr 2022
No UTI, no indication of stroke. No other suggestions about what might be going on, but the doc did say it didn't seem normal that she would have so many points of decline so close together. I'm going to continue pursuing it with her neurologist on Monday because after you mentioned other things that could be going on medically, that just made so much more sense than simply missing me.

So the questions continue.
poodledoodle Apr 2022
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.

TNtechie Apr 2022
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.

BarbBrooklyn Apr 2022
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!

TChamp Apr 2022
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.

againx100 Apr 2022
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.
mgmbaker Apr 2022
I asked myself today if I would have handled the week away the same way if I had known it could be so detrimental and had to admit that I would. She would have me be by her side the moment she wakes up every day and not leave until after she goes to sleep at night. Knowing that this disease could take years to kill her, I know I've got a long road ahead and rest is critical - BUT I needed to hear that taking a break is okay.

What you described in your first paragraph has been my experience thus far - a little here, a little there, sometimes I don't even realize a change until I look back on a visit.

The more I think about it, the less I take it at face value that it's just my absence that caused her decline. I"m going to see if I can get her in to see her doc tomorrow.
mgmbaker Apr 2022
Good ideas Barb. Thanks!

BarbBrooklyn Apr 2022
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.

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