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Well, it happened. 1poormom didn't recognize my voice over the phone until I told her who I was. She still remembered me once I told her. Her decline has been rapid over the past two or three years. Apparently she doesn't remember being moved into memory care. The facility lays out the rooms identically, and tell me it's not uncommon for residents not to realize they've been moved, or to forget shorting after it happens.

They try to keep her engaged, but she's resistant to socializing. Which doesn't help. Socializing forces the brain to work harder, and appears to slow the progress of dementia. At least she still reads her newspaper.

They try to keep her engaged, but she's resistant to socializing. Which doesn't help.

As I am rather certain that you already know, there is no good news that follows. I do empathise with you as I have experienced, in three different circumstances, the effect that dementia has on the family carer(s). In one case it sent on for 8 years (prior to death) and another it can on profoundly quickly, the first sign to death was a mere 12 months. I worked with this person, and could hardly believe it when I invited for a friendly coffee to a reply that he had died.

Your mother being in a care home is likely infinitely better - in this late phase of the problem where she can't even recognise your voice - than having her at home, increasingly failing to even recognising who you are, but you seeing her as the same month and having to go through the agony that I have seen others go through.

- Manlobbi

Well, it happened. 1poormom didn't recognize my voice over the phone until I told her who I was.

I am so sorry. No matter how aware we are that this is coming, it's still a shock to have it happen. Do they know the type of dementia and the cause?

I would like to be all sunshine and hope for you, but the reality is with this disease though decline is not a straight downward line and comes with moments of lucidity, it typically is not currently permanently reversible. Perhaps so if the issue is nutrition based, but not for Alzheimer's.

You say that your Mom remembered you when prompted, and indeed she likely still remembers the young you, but is confused by the adult you. However, from my experience with family Alzheimer's, there is a cunningness that the dementia patient uses to try to hide their condition, and you always have to be analyzing the interactions with your mom for authenticity. It has to be terrorizing for them to be constantly surrounded by strangers and items they don't understand, and they do their best to hide in plain sight by taking wild guesses as to what to do with what they are faced with. My aunt actually walked out of the bathroom Dad had sent her into to change, wearing her underwear on her head. It's absolute exhaustion to be constantly doing this, which is why the patient tends to avoid socialization, IMO.

At least she still reads her newspaper.

This is a good sign, if only to show that she knows what to do with the paper, even if she is no longer actually following what is going on. If you notice she picks up the paper less, or doesn't remember how to handle it, that will be sign of progression. If you can handle it, perhaps try calling her daily to ask if there were any good news stories you missed? Or suggest one of the nurses/aides do the same? That may be a good routine for her, assuming that she remembers the story long enough to tell it. You don't want to add to her frustration, but give her a reason to continue reading, as well as use the activity for a progression check and one on one socialization.

Alzheimer's runs strong in Dad's side of the family. His mom, two sisters and we believe he had it as well, leaving me with a good chance of getting it myself. We recently had to let our 17 year old fur baby go, and it was frankly a beautiful and unselfish thing to take away his pain, rather than make him live through it. I intend to be similarly unselfish should I start to experience dementia. I don't want to put my DH or kids through that.

IP

The neurologist never ventured that far. When she was in the hospital after her fall, the staff immediately saw that she needed an eval. She was evaluated with early dementia, and the doctor went so far as to say she should never drive again, and never live alone. Fast forward to today (about 4 years later), and her decline is very evident. She went from IL to AL, and about 3 or 4 months ago to memory care. The type of dementia was never assessed to my knowledge. I believe it is consistent with ALZ (started with word-finding and lots of notes all around her house, progressed to auditory and visual hallucinations, and ever-increasing paranoia that people are stealing her stuff).

I wouldn't want to put 1poorlady through this, either. But she would NOT be supportive of my exiting early. And, while I'd like to think I can do it, I won't know until that moment comes. It's one thing to talk about it in the abstract, it's another to pull the trigger (figuratively or literally).

The neurologist never ventured that far.

Did they never do a nutrition assessment? Was your mom eating all right, getting enough protein?

If the nutritional deficiencies become severe enough or are chronic, a patient may begin to show signs of dementia; such as memory loss, difficulty with language, a change in personality or behavior and mild confusion.

https://www.dementia.org/diet-induced-dementia-nut....

More at the link. Most doctors are deficient in their understanding of nutrition and it's impact on health. They spend a miniscule amount of time studying the subject.

IP

When she fell, I had to go to her home while she was in the hospital. Check mail, etc. Her fridge was mostly empty. Some salad stuff, and an inedible monstrosity that I think was supposed to be meatloaf. She was never a great cook, but even by her standards that was terrible. So, no, I assume she was not getting good nutrition. When she moved in with us prior to the IL facility, she had to eat better. And the IL facility had good options for her. So it should be better than it was. AL and memory care have similarly good options. Though they can't make her eat.

She was never a great cook, but even by her standards that was terrible. So, no, I assume she was not getting good nutrition.

This is often the case as we get older. I was always stunned at the cr@p Dad had in his fridge, what he insisted was OK to eat. He was the cook in the family, but the taste buds seem to work less well as we age.

Institutional food is often not the best, even at the fancy independent living facilities that require a high dollar buy in. I used to visit my parents in one of these places. They would rave about the "restaurant quality food," while I struggled to cobble together a healthy meal for me and the kids from the offerings. Though I've never been able to find the source, I once noted it said that "sugar is the opiate of the elderly." Sweet is one of the last things they taste when other tastes recede, and there seemed to be sugar in absolutely everything coming out of that kitchen!

When my Aunt was in AL and Memory Care, Dad had the luxury of seeing her daily, always at lunch to make sure she ate at least one meal. He would also bring her fortified sweets, like Ensure. These days there are all sorts of protein bars that could help as well. We are huge fans of Fitness Crunch bars, which frankly taste like a candy bar, but there are many on the market with sugar in them rather than erythritol, which may work for your mom.

With our family history, we were sure it was Alzheimer's. Trying to find a cause in someone exhibiting symptoms can be like a game of whack-a-mole, though. It takes time to reverse nutritional deficits, not to mention trying to see if one of the meds they are on is causing it, or a combination thereof. The best defense is to eat well in the first place, which is of course easier said than done.

It has been theorized that sugar consumption is implicated in developing Alzheimer's, which is one reason why we have been following a low carb diet for about 25 years now. There have started to be significant studies supporting this theory. A brief googling gave me this rather simplistic link, but you could google it further if you are interested: https://food.ndtv.com/health/the-bittersweet-truth... A book that I am still in the midst of reading tells you more about the scavenging glia: https://donnajacksonnakazawa.com/the-angel-and-the... Wendy on METAR is the one who brought the book to my attention.

Before we selected the facility, we ate in their dining room. The food was pretty good. But I have no way of knowing how much sugar was in it. It didn't strike me as particularly sweet. And 1poormom doesn't like sweet stuff, in general.

I tend to shy away from artificial ingredients, or ingredients I need a chemistry degree to figure out. If something should have sugar, then it should have sugar. I figure the artificial sweetener is worse than actual sugar. If I want to avoid sugar, I avoid it (e.g. my soda consumption is way down because I refuse HFCS, so it is self-limiting in the USA since very few sodas have real sugar). I haven't baked cookies in a year or more, though I did some banana bread a few months ago.

Carbs are a problem. 1poorlady is Asian. So rice is a staple. We've reduced it A LOT, but it's still common at meal time.

If something should have sugar, then it should have sugar. I figure the artificial sweetener is worse than actual sugar.

Erythritol is an organic compound, a four-carbon sugar alcohol (or polyol) with no optical activity,[2] used as a food additive and sugar substitute. It is naturally occurring. It can be made from corn using enzymes and fermentation. Its formula is C4H10O4, or HO(CH2)(CHOH)2(CH2)OH; specifically, one particular stereoisomer with that formula.

Erythritol is 60'70% as sweet as sucrose (table sugar). However, erythritol is almost completely noncaloric[3] and does not affect blood sugar[4] or cause tooth decay.[5] Japanese companies pioneered the commercial development of erythritol as a sweetener in the 1990s. https://en.wikipedia.org/wiki/Erythritol

...or ingredients I need a chemistry degree to figure out.

Fortunately, I am a Chemist, married to a Chemical Engineer. We feel very comfortable with erythritol, unlike many other sweeteners. Has the added benefit of not triggering carb cravings, nor causing gastric distress for most people, unlike other sugar alcohols. We don't eat a lot of sweets, but it is nice to do so from time to time, particularly around the holidays. And honestly, given the low carb nature of our sweets, made with almond flour rather than wheat flour, there is no reason not to have treats, as long as they do not crowd out your high nutritive foods.

Carbs are a problem. 1poorlady is Asian. So rice is a staple.

Short grain brown rice with butter and furikake seasoning used to be one of my favorite foods. Spiked my carb cravings terribly, even with copious amounts of butter to slow down the carb absorption. We use riced cauliflower for many of our previously rice based dishes. Takes a bit of a work around, like sautéing in plenty of olive oil and seasoning, but it can work well. This is my favorite "rice" dish, though Cajun, not Asian: https://alldayidreamaboutfood.com/easy-keto-jambal... (Note: I do add onion to this recipe. I will never refuse myself onions.) Great website. I also whip up a cauli-rice pilaf, using all sorts of veggies sautéed up with the cauli rice and seasoning of choice. I keep this in the fridge and nuke it up with a protein, often leftovers. The key to eating well is to have something good and good for you on hand when you get hungry!

IP

The way I understand it erlythritol by itself is generally considered safe. However, erythritol is not really all that sweet by itself and is typically combined with other questionable sweeteners (I'm thinking aspartame for example and god only knows what else).

My issue is that most if not all erythritol in foods and drinks today are highly processed and are derived from cornstarch that comes from genetically modified corn (me no likey GMO foods if I can avoid them). So if I did use it, I would get erythritol by itself in a granular form. For me, I'm sticking with plain old sugar when baking/cooking (Me likey brown sugar and pineapples when preparing a bone-in ham in the oven).

Don't get me wrong, I am by no means a saint when it comes to food preparation and or the consumption of it. But when I can, I try and make the "best" choices for me and my family. Another example that comes to mind is that we use real butter now. None of those other artificial versions (10+ years now or so). We also buy real maple syrup (crazy expensive, but it is what it is).

I suspect it all comes down to moderation, If someone was to present a tray of assorted chocolate bars at a kids sporting event or whatever, I might indulge in a Snickers bar, if there was one. Of course, it would all be in the name of science, quality control and to weed out any concerns of potential food poisoning exposure to any of the little ones present :)

However, erythritol is not really all that sweet by itself and is typically combined with other questionable sweeteners (I'm thinking aspartame for example and god only knows what else).

Erythritol is plenty sweet all on it's own. I have seen/used it blended with Monk Fruit and stevia, neither of which are "questionable."

My issue is that most if not all erythritol in foods and drinks today are highly processed and are derived from cornstarch that comes from genetically modified corn (me no likey GMO foods if I can avoid them). So if I did use it, I would get erythritol by itself in a granular form. For me, I'm sticking with plain old sugar when baking/cooking...

Unless you are using beet juice or pressed sugar cane, your crystalized sugar is also processed. In my vegan days I did sweeten with beets that I juiced myself. Actually works fabulous in chocolate cake, with tofu frosting. Surprisingly big hit with all the kids at my then 2 year old's party.

I just pulled my two brands of erythritol/monk fruit extract to check them out. Lakanto and Whole Earth brands. Both are non-GMO.

Another example that comes to mind is that we use real butter now.

Grass fed and organic butter is still the way to go. Toxins tend to accumulate in fat, so anything that is high fat I try to get organic.

I suspect it all comes down to moderation, ...

For some people. For others, sugars, or carbs and even excess protein that become sugars, are like opiods and trigger a crazy craving for more, more, more carbs. People like to think body chemistry is identical from one to the next, but there are variations. Ironically, actual opiods do nothing for me, including killing pain. I have one kid who is the same, and I had to fight for his right to acetaminophen when he had a bad accident that landed him in the hospital with a compound fracture of the tibia. IV dilaudid left him screaming in pain, but when the doctor finally listened to me and told the nurse to give him IV acetaminophen, it did the trick. The body is complicated and we are not all the same. I have zero problem passing up a juicy dessert, harder passing on good bread, which is my particular fave and for which I used to be sought after by people wanting to buy it from me. All it takes to pass it up is the knowledge that those high carb items would leave me nauseous, with heart palpitations and cravings that would require going cold turkey off of carbs for several days before they stopped. That and the knowledge that I can make my own low carb version.

I have been low carb for close to 25 years. I would say that is disciplined.

IP

Well, it happened. 1poormom didn't recognize my voice over the phone until I told her who I was.

My goodness. I feel for you! It's such an individual issue. As my dad's dementia advanced after we had moved him to a dementia unit in a wonderful nursing home, and he could no longer walk or talk or hug or feed himself, he still knew me and my brother'both by sight, and by voice on the phone (our 1-way conversations) right up until the very end. Yet the woman who shared his table at meals, and was close to 100, walked independently, dressed herself, toileted herself, etc etc, yet could not recognize her children or grandchildren. They'd come to visit and she'd ask in puzzlement as they hugged and kissed her....."who are you??"

Dementia steals your loved one a little piece at a time over years. Loss followed by loss followed by loss....and loss...and loss.

=sheila

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