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A discussion about dementia

Posted by sushipup (My Page) on
Tue, May 26, 09 at 0:46

I'd like to start a thread that might be a resource for people who are new to our forum. I note that time after time, caregivers will claim that their loved one does not have dementia, yet they report behaviors that lead others to say, oh, yes, that's a form of dementia.

Now there is another thing I notice, which is when a personality trait becomes intensified with age or illness. My own mother was a very insecure person. but my father was the steadying influence. The last 6 years of her life without him, she was increasingly paranoid about money and security, when she had no need to be. I could never reassure her that all was well. She was sharp, even at 95, but showed behaviors that were exaggerated and illogical. Dementia? Well, she was 95, and such changes in cognitive function are indeed called dementia.

I found this good article, and I'd like to discuss it with others here. Maybe our discussion can help people who come to our forum in the future.

Here is a link that might be useful: geriatric dementia


Follow-Up Postings:

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RE: A discussion about dementia

My 81-yr old MIL lives with us, and although I'd rather she didn't, it's clear to my DH and I she isn't really capable of living on her own. It's equal parts physical, mental and emotional.

The emotional part is cultural - she comes from a generation where women were defined solely by their husbands. Without him (stepdad died 8 yrs ago) she's rudderless, a helpless child who wants to be told what junk mail she can throw out, chauffered everywhere and dependent on someone else providing companionship.

She's an extremely nice woman, for which I'm thankful, but conversely because she turned her brain off about 50 yrs ago, is totally unable to re-start the thinking process. She's also in denial about getting old - fought us about her hearing and eyesight, went into tears at the idea of switching doctors - which we made her do anyway, thankfully, as the new doctor is a geriatric specialist who's not only a real gem, he's only 5 minutes from our house and affiliated with the best hospital/emergency room in our immediate area.

Because we are with her 24/7, we have seen evidence of mental decline that would have escaped us if she was still living independently. As a result of her ingrained habit of not thinking, her brain is literally "rusty". She can think, but it's really, really difficult for her.

Where we see the decline is in her ability to compare two things - whether physical objects or actual ideas. She likes to do the Jumble in the newspaper - she literally aces it, because she's done it for 40 years every day. But a privacy notice from her credit card company completely flummoxes her. She can read the sentences aloud, but she just can't wrap her brain around which one is better/applicable to her. It's really very sad.

My DH took her for a walk around the neighborhood recently and discovered she has a difficult time at certain 5-way intersections, because she can't tell from what directions the traffic is coming from. She is more and more easily confused. We can see that she has a habit of forming conclusions (trying to make sense of the world around her), refusing to give them up even when you must show her such a conclusion is wrong.

She does not have Alzheimers. What she has is a diminishing mental capacity, a total lack of flexibility and adaptability to a world that continues to progress beyond what she can assimilate.

In a way this type of dementia is the saddest of all, because it is a type YOU can personally prevent. You can keep mentally active, socially involved, and physically health, to slow down this mental rigidity.

One thing I have noticed is that she has absolutely no idea of nutrition. She honestly believed she was getting sufficient calcium in her diet by using Mocha Mix (the non-dairy product) in her coffee and on her Cheerios! Not surprising she has serious osteoporosis. When she first came to live with us I would take her grocery shopping with me, but quickly stopped. She tries to buy all kinds of junk food products, saying "Oh, my son likes chocolate, so this package is just right, it only has six banana-chocolate muffins" - yeah, six transfat-loaded artificially flavored sugar-fat bombs....hmmm, thanks but no thanks.

The NYTimes ran a great article recently titled "At the Bridge Table, Clues to a Lucid Old Age". This ran on May 22nd and is still available from their archives.

Another article I saved was from Forbes.com but it came out last year, August 2008, so it may not be available on-line any longer. Titled "10 Surprising Things That Affect Memory", an excerpt is pasted below:

"Maintaining mental acuity is a major concern for aging Americans; they want to make the most of their golden years rather than have to struggle through them. In fact, adults are more than twice as likely to fear losing their mental capacity as their physical capacity, according to a 2006 poll by Research!America, a nonprofit public education and advocacy alliance.

While many know the basics when it comes to keeping their minds sharp (stick with those crosswords), a crop of new research is showing that lifestyle choices may play an even bigger role than people realize, particularly in terms of memory. Factorssome positive, some negativerange from diet to unlikely medications and hormonal changes.

"Most people feel that they are victims when it comes to Alzheimer's and memory loss," says Dr. Vincent Fortanasce, author of the new book The Anti-Alzheimer's Prescription.

But Fortanasce points out that there's a difference between mental agility, which is our ability to multi-task and do things quickly, and mental capacity, which is our ability to reason and use our experience. When we age, just as we naturally lose physical agility, we lose mental agility. But you can do something about, even increase, your mental capacity as you grow older, Fortanasce says."


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RE: A discussion about dementia

Another thing that I have noticed is the increasing lack of the ability to reason things out. They can't remember 2+2=4 and cannot figure it out....they may come up with something like Peanut Butter and Jelly.

One night while my mother was with us, we heard the water turning on and off and on and off, I went to check on her. She was trying to flush the toilet by filling her shoe up with water and pouring it in the toilet. Using the little handle was beyond her ability to reason. When I showed her, she was dumbfounded that her stupid daughter was smart enough to figure out how to make the toilet flush, but she couldn't.

She was still "sharp." Her vocabulary was still good and she could carry on a conversation....that is unless it required her to rely on some sort of mental reasoning.

Dementia is a dreadful problem. Some patients are just easier to contend with than others. Personalities are either completly changed or flaws become worse. The stubborn and independent can become impossible to handle without a great deal of medication.


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RE: A discussion about dementia

Oh my gosh! This posting is so like my MIL. Thanks so much for your imput.


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RE: A discussion about dementia

I never considered that my mother at 95 had dementia, either,before she died. But she certainly was OCD and that became all-consuming, and she lost her ability to reason.

She obsessed about money until I took away her checkbook, and then she still obsessed, but didn't stay awake nights trying to 'balance' it. She believed that if the social security check was deposited on the last day of the month, it would be taken away and she would be punished. She worried about theft in the apartment/AL facility where she lived, and hid her little stash of money in a different place every day. I recall that she was very upset when three other people on the third floor where she lived all had 'incidents'----one had her car stolen from the grocery store parking lot, another person (clearly suffering real dementia) talked about seeing people in her apartment, and someone else had something stolen or so she thought. Mother thought that the 3rd floor apartments were being targeted and wanted to move.

But I never thought that she suffered dementia. I have learned a lot since then.


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RE: A discussion about dementia

I agree that the inability to reason or understand cause & effect were definite signals that my mom was heading toward dementia. Like sushipup, it took me a long time to finally understand what was happening to her. I just thought she was being obstinate. One really strange conversation demonstrates her inability to reason things out. She was always bothered by constipation. I thought it was because she didn't drink enough liquids, and it was a constant battle to get her to drink more water, tea, juice... anything! I talked to her over & over again about the importance of liquid intake when battling constipation. And the importance of eating plenty of fresh fruits & vegetables. All to no avail. One day while she was discussing, once again, her constipation troubles, she told me she'd like to have an operation to make her "hole" (her exact words) larger so it would be easier for her to have a bowel movement. I didn't know whether to be horrified or laugh out loud. She honestly thought going through surgery would be a solution.


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RE: A discussion about dementia

It started with little things. When we were visiting, she asked for me (the banker in the family) to look at a bill that had come, because she couldn't make sense out of it. She has bad eyesight, so we assumed it was a vision issue. Turns out she had overpaid the previous month (probably misread the numbers) and the bill was a credit for $5 and change. It took me a really long time to explain to her that she didn't have to pay anything this month, and what a credit was. I still wasn't sure she really got it.

Later, when she was in the hospital and going to be moved to AL, she couldn't understand how it would be paid for. She knew how much her income each month was, and that it wasn't enough to cover the monthly AL charge. She simply couldn't process that we would take some of her substantial savings out each month to cover the difference.

She went through a paranoid phase. She was convinced people were stealing things from her empty house and her room at the AL.

Now she is much worse. She was amazed that the leaves had come out on the shrubs, but still thought that DD was coming home for winter break, not summer break.


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RE: A discussion about dementia

I want to thank everyone who has posted here - I think hearing these kinds of anecdotes help others who aren't sure whether elderly relatives/spouses are evidencing problems or if it's just a few 'senior moments'. Thanks, sushipup, for starting this thread.


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RE: A discussion about dementia

"Now there is another thing I notice, which is when a personality trait becomes intensified with age or illness."

I think this is very much the case with my 88 yo MIL.

I think that most of us have quirks about one thing or another- whether it is checking the stove five times or picking hangnails or whatever. But our lives are busy and we just don't have the time to focus on the little things quite as closely as we might.

Fast forward xx years and I have someone basically confined to one room with very little social activity. She refuses to leave the house because she might have to go to the bathroom (evidently that is supremely embarrassing), she refuses to wear hearing aids so most people are way past trying to have an actual conversation, and can't walk two steps but refuses to be wheeled in a wheelchair. She has a lot of pain from spinal stenosis, is seeing her control over her own life eroded on a daily basis, and has absolutely nothing to do all day except obsess over things that used to be mere quirks.

It's no wonder to me that she zeroes in on one thing or another in what feels like an attempt to make my life miserable- she has nothing else. God forbid you try and talk to her about it as she immediately gets very defensive and mishears what little does get through her near deafness. Then she stews on it all day and you have to do round 2 that night.

Is this dementia?
Not to me but I am hardly a medical professional.
If you ask me (and even her if she is in a talking mood) she is just tired of living but too afraid of dying to let go, and thus cranky over life in general.
So we accommodate her tiny acts of tyranny and just hope that one day it will be over.

I think there are a lot of families like us out there.
It's never going to be a perfect situation any way you look at it.


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RE: A discussion about dementia

"....she refuses to wear hearing aids..."

Just a quip from personal experience. These things can change your life!! If she's not hearing, that can explain all manner of other issues. Managing my own 97-year-young mother would be nearly impossible without them. With them, everything works again.

The new ones no longer require ear-molds. The ear canal stays free and open. No ponderous fitting and waiting. No guesswork anymore. They can be adjusted to her own tested requirements and fitted in a single 45-minute visit and she can walk out with new ears. Incredibly simple -- and they WORK!

About $2,500 per piece. However, if you've got the bucks I wouldn't hesitate rethinking this possibility. The vendor linked below is the top of the heap.

Here is a link that might be useful: The ones I and two of my siblings have


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RE: A discussion about dementia

I am SO very glad to see this thread...it's one I've wanted to start myself, but I'm so afraid of sounding whiny about my MIL. My own sweet mother drilled the Golden Rule into me as a child, and now I feel terribly guilty when I find myself rolling my eyes or mumbling under my breath when MIL's dementia rears it's ugly head. Isn't is amazing how different people can experience similar symptoms with this crazy stuff ? I mean, I feel like some of the previous posters on this thread have been in my home and are actually taking about my MIL.
She is 84, does not have Alzheimer's, but rather her dementia came about as the result of a stroke. She feeds herself, dresses herself, is mobile, and trys to be pleasant. But conversations can be difficult, because it's obvious she no longer understands a lot of basic concepts. Not to mention that she's hard of hearing (we're looking into getting hearing aids for her now). She has periodic bouts of constipation, depression, anxiety, etc.
I try very hard to respect her dignity and to treat her with kindness, but it's very trying sometimes. One of the most frustrating things is that she can't/won't make simple choices, like what to have for lunch. I think it's important to give her choices, so that she feels as though she has at least some measure of control over her life, but this seems to be too much for her to think about. For example, I'll ask her "What would you like to have for lunch ?" and she'll say, "I don't know. What would you like ?". So I say, "How about a sandwich ? Would you like peanut butter & jelly, or tuna fish ?" Her: "Oh, either one's fine ". And I just want to scream, "Please, stop making me make EVERY freakin' decision for you ! You MUST have a preference ! Think !"
But of course I never say this. My dh doesn't even try to make her choose, he just makes something he thinks she will like, and sits down with her and eats. This seems like a cop-out to me, not to mention that I would find this a little demeaning if I were in her shoes. Naturally, he is much less stressed about the whole issue.
I just think it's important that she at least TRY to make her brain work a little better. She watches television from the time she gets up in the morning until she goes to bed at night. She says there's nothing else she's able to do. She loves folding laundry (which she does well), but there's only so much laundry to do in a week. She likes prepping vegetables for dinner, but dh worries about her handling a knife. I let her do it anyway; she only does it sitting down at the table, and her hands are so weak, it's hard to imagine that she could cut herself.
She's completely obsessed with dates and times. She sometimes checks her watch (which she can barely see) every few minutes. Does she have to be somewhere at a certain time ? I don't understand this at all. Since the date seems to be important to her as well, we got her a calendar to keep in her bedroom, a nice large one, meant for people who have limited vision (she has macular degeneration). She asks every day what today's date is, and then goes to her calendar to mark it. Yet invariably, sometime during the month, she'll discover that she has mixed up what week it is and then she'll talk about that for the next two hours.
She is convinced that there is "a pill" for every ailment. And I guess that's true, but I wish she weren't so quick to take something when there may be a more natural way. Like for constipation, I suggested that she might want to think about what she eats, and how about we try some prunes ? This little gem was news to her, and to give her credit, she was willing to try it, and it helped. Just not quite enough. The strange thing is that she doesn't understand why she might be constipated when she took "a pill" for that same problem 2 weeks ago. Apparently, you're supposed to be free from the problem forever after you take something for it. I've had the hardest time trying to explain to her that if you have to take something for arthritis pain (which she does), you will probably have to take it again the next day, and the next day, and the next. She cannot grasp this concept.
I've cautioned my husband about mentioning medical issues around her, because she listens intently and then decides she has that problem too. Last week, she had a pain in her calf and decided that she needed to ask the doctor for an MRI on her leg. I can promise you, she has no idea what an MRI is. I told her we would ask the doctor to examine her leg, and then we would rely on the doctor to decide what needed to be done. She was insistent about an MRI up until the time we got to the dr's office, then she dummies up comletely and wants ME to tell the doc that her leg hurts. No mention of an MRI from her.


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RE: A discussion about dementia

telly...let's talk about a few things here. You want her to "make up her mind". That's understandable....to YOU, but not to her. She is no more capable of making desicions than a 2 year old. The more you insist that she do something, the more confused she will be. She simply does NOT understand the things that she should. There's not much that you can do to help. The part of her mind that functions, does not function correctly at all times.

She remembers taking a pill for her constipation. What she doesn't remember is the passing of time. As far as she is concerned, it could have been last night.

In other words, stop beating yourself over the head trying to get her to understand or function as you think she should. It won't happen. All you are going to do is to frustrate yourself more and more.

And it will probably get worse. Learn to live with it now and it will be easier later. There is just no way you can explain things to her. Even if she understands NOW, there is a good chance that she won't understand later.


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RE: A discussion about dementia

Agnespuffin, I don't insist that she decide. I just think that everyone knows what they like, and what they don't like. Even 2 year olds. I'm merely giving her choices, as I would want someone to do for me. Should I give her whatever food I decide she should eat ? I am learning as I go, and I try to prepare foods that she seems to enjoy.
On medication, maybe I wasn't clear: she seems to think that if you take something once for constipation, you should never, ever be constipated again. I get that she doesn't understand the concept of ongoing health issues. I was merely presenting, as others here have done, another example of the curious (to me at least) ideas that people with dementia can come up with. It's just that it makes communication even more difficult because you never know what they're going to say next.


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RE: A discussion about dementia

Telly, you have just about accurately described my mother a couple of years ago. She was exactly the same way about food choices. She lived at a lovely assisted living facility, so I wasn't involved with her meals there. But I'd take her out to lunch at least once or twice a week as our special treat. It was similar to what you described. First, she wouldn't even try to read the menu because of her poor eyesight (macular degeneration). She had 6x reading glasses with her; the same she used to read the paper in her apt., but she wouldn't get them out. Then came, "What are you going to have?" Well, I always wanted to eat something that I knew she wouldn't like. So I'd read off two or three choices that she might enjoy. But she could never decide. So eventually, I'd pick one and order it for her. As time went on, eating out became less of a treat and more of an ordeal. She'd complain about dishes she had ordered and enjoyed just a month earlier. It became harder & harder for her to chew the food correctly and to handle the utensils. She also started getting confused when we'd return to her apartment. It finally got to be way too much and I gave it up.

I think Agenspuffin is trying to say that sometimes expecting our elderly loved ones to make choices is actually counterproductive. It's all too confusing for them. There is security in someone else making the decision for you. Comparisons with young children are not appropriate. Children are learning and moving toward independence. The elderly are un-learning and moving more & more toward complete dependence.

You already read about my mom's adventures with constipation. She had some of the same attitudes as your MIL. The first time I had to take her to the ER for manual extraction of severe constipation, it was such an ordeal, I was sure she'd never let herself get that bad again. Wrong! She called me up the next day, after the nurses had worked on her and given her all kinds of laxatives. She told me that she had another BM and she knew she didn't need to take her Metamucil caplets any longer. Sound familiar? Needless to say, no matter how many times I explained what needed to be done to avoid constipation, she never got it. And she was eventually hospitalized for over a week for severely impacted bowels.

You're so right about the difficulties with communication. Dealing with medical issues is really problematic because often they cannot adequately describe what is going on with their bodies. All you can do is do your best given the circumstances. You can never beat yourself up because you didn't quite figure out exactly what was happening with their health.


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Also.....(and thank you, jkom51)

I understand that this will probably get worse, and I'm very grateful that she's no worse than she is, for now.

I read with interest jkom51's post, especially the part about avoiding the factors that can contribute to dementia. I have also heard that one's social network can be a factor, and I worry about how isolated I am now, due to caring for someone 24/7. I do not EVER want this to happen to me, if it can be avoided.


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RE: A discussion about dementia

telly2,

Your MIL is very much like my grandmother. Granny cannot make the simplest decision. Choices confuse her, to the point of tears if the issue keeps being pressed for an answer. Best to NOT ask your MIL what she wants to eat, just prepare something and set it before her. When you find something she refuses to eat, make note of it to not serve that item again ... or maybe try it on another day, maybe she'll take it then. Granny often complains or wrinkles her nose at certain foods, but she may eat them anyway.

Her sight and hearing are both failing. She fusses about getting eyes checked so we don't often press the issue. She refuses to consider a hearing aid. She cannot understand about diabetic effects, or nutrition to manage it. She apparently thinks that "poking her finger" (checking glucose) is some sort of therapy that's supposed to make the diabetic condition better, although she doesn't believe it'll help. It must be understood, however, that she has only a 3rd-grade education.

She cannot answer questions. If asked what she had for lunch, if anyone called, where she went visiting (with the caregiver), if she watched Price is Right this morning ... she does not remember, minutes or hrs later. She is losing old memories now as well. She told me 6 months ago that her husband never lived at the house with her (which of course he did), although she knows he died there. She couldn't tell me where (she thinks) he lived, or explain why he would have died there if he lived elsewhere. She keeps getting confused that one of her granddaughters "lives close by me" which is not quite the case. When I take her town for a doctor appt or a burger, or to my parents for a visit (a couple towns over), she doesn't recognize where are we. The route and town, I mean. She does know we're getting a hamburger or are at my parents' house.

ANYTHING that goes wrong, that disturbs the status quo, rocks her world. She lost a filling last week. I took her to get it fixed. Upon getting home, she sat and cried for 10 mins about "What I have to go through in my old age." Something went wrong with the garage door, the caregiver couldn't get it open to take the car for groceries. Granny called the neighbor, after I had told her that I'll come check it. When I asked why she called the neighbor, that I had told her I'll be by a little later in the evening, she cried for 30 minutes.

She has lost all sense of time and date. Never knows what is the day, and cannot follow time in her mind, as in such-and-such TV show will be on in 30 mins. She enjoys watching Astros baseball, but has to be told *at the moment* to turn on the TV. My sister wrote all the gametimes for the season on a calendar, she cannot follow it. She doesn't remember she has a calendar. If I show it to her, she can sometimes (not always) find the date and time, but she doesn't know what it means. I tell her it means Astros play at 7:00 today, she'll repeat back "Astros play at 7:00" but doesn't seem to make a connection with what's written on the calendar. She can keep up with her medication only because I got a pill dispenser/timer, although she once in a while misses an early-morning dose if she doesn't get up for the buzzer, or may miss pulling one pill out of the dispenser cup if there are several involved.

She is, however, still able to dress and bathe herself, get around the house, go outside, check the mailbox (if she is told or sees the mailman). She can make coffee, toast, cut and peel an apple, look in the refrigerator if she's hungry (although she doesn't eat anywhere near as she should), wash the dishes. How much longer she'll retain these things, who knows. I called several times one day last week, busy signal. Found later she had the phone upside down with the receiver laid across it perfectly as if hung up.

My sister and her roommate came to visit Saturday. They took Granny to Wal-Mart, then got something for lunch at the house. Everything was great. Granny called me today, crying that "Cheryl beat me up." Of course, no such thing happened. She couldn't remember which day, couldn't come up with any details, and said Cheryl was there alone. I gently suggested that it was a bad dream, that nothing really happened, but she didn't seem convinced. She had the same story two years ago, that my mother had attacked her ... which wasn't the case at all because I know where Mom was at the time.

Oh, constipation. Yup, we've got that going on. The caregiver is very good about the daily dose of Miralax, but that isn't always enough. Compounded by Granny not eating as she should. Doesn't matter how many times I tell her what she needs to do, or how many different ways I present the info ... she just puts her head down and looks away.

OK, here we go. She called again just now. Frantic about a supposed broken pipe in the back yard, water everywhere. She exaggerates, a LOT ... but the last time I didn't go look right away, there really was a ruptured faucet connector under the kitchen sink.


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RE: A discussion about dementia

Shambo, I think you're right about the security issue. I always get the sense that she doesn't want to say what she wants because she thinks that somehow her choice will be "wrong". So she'd rather someone else decide for her. I want her to use her mind on small things at least. And I guess that's the real source of my frustration, because we've been very careful to make her feel at home, and to allow her as much independence as is possible. There is no "wrong" choice, and how in the world did she decide that there is ? This is so sad !


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RE: A discussion about dementia

You must give up on your expectations. She's not "deciding" anything in particular. Her brain is shutting down. It doesn't work like yours or any "normal" person's does anymore -- and its not coming back. "Choices" are something she may not understand at all anymore. You're dealing with progressive incompetence. And it comes and goes, just in case you really needed any more confusion. Nobody in a position to influence the situation allows incompetent people to make decisions...."choices". Basically, your job is to impose what is needed at the moment and, hopefully, be able to do it in a a way that elicits cooperation. In some situations -- like my own -- this is easy. In other situations -- I know -- it borders on impossible.

In particular, I would like to comment about the constipation thing. NEVER allow this to get out of control! NEVER! The consequences are so unpleasant, disruptive, painful, and expensive there's nothing else for it but to stay on top of it constantly. In many situations this means IMPOSING a regimen of dietary assists. Talking about fluids, stool softeners, metamucil, prunes, etc., etc.....whatever does the "regularity" job in your particular circumstance.

Basically what I'm saying is to hell with "choices" when you're this far down the road. Do what needs to be done. Sometimes -- as in my own case -- it's pretty easy. Other times its really rough. Only saying the alternative is rougher. Interestingly, interpersonal skills emerge as critically important -- the means to get them to cooperate with what must be done.

Interesting stuff, but it can make you nuts.


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RE: A discussion about dementia

Asolo: So far, she has been pretty good about telling me if she's constipated, although I know this is embarrassing for her (as it would be for me). After reading some of the posts here, I realize that my MIL is not nearly as far gone as some others. So right now, I depend on her to tell me if she has a problem; will it get so bad she can't tell me, and if that happens, how will I know that there's something that needs to be dealt with ? I intend to take your advice, and never let it get to the point of an emergency. Why is there so much constipation in the elderly ? I'm aware that lots of meds have that side effect, but I wonder if it's also in the nature of getting older.


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RE: A discussion about dementia

Well, that's the nut...depending on her to inform you when SHE thinks she has a problem. She may not know or she may forget. Or -- as so often happens -- she "doesn't want to bother you" until she's thoroughly impacted and can't stand the pain any longer. By which time it's actually a medical emergency and you'll be calling 911. The pain engendered can be unbelievable and it can build at an astonishing rate. You do NOT want to go there.

I'm not the world's expert by any stretch but, based on my own situation with my 97-year-young mom, I will tell you that I talk with her about BM's every single day. If she misses a day, that's OK, but my mental stop-watch starts ticking. If she misses two in a row, I don't hesitate to act.

In our particular case, a couple of prunes every day, regular stool softeners, a heaping teaspoon of Metamucil in OJ every day along with plenty of fluids and a decent diet have kept things going OK. Things to do to help "regularity" and things to do when control is slipping are as varied as the individuals. Nursing home personnel are wonderful for ideas about variations on remedies and help-alongs.

I encourage people to come up to speed about it because it is, indeed, an every-day thing and is, typically, easy enough to manage -- assuming reasonable oversight. However, the consequences of letting it get out of control can be truly awful.


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RE: A discussion about dementia

I second what asolo said about not letting the constipation issue get out of hand. My mother's situation got to the point, as mentioned before, that she was hospitalized for a week. The doctor performed manual extractions several times and she was given strong laxatives. When she was finally cleaned out, she was too weak to return to her AL apt. and had to spend another week in a convalescent hospital. The physical & mental trauma of the hospitalization took its toll on her and she was never the same. In fact, the end result was a significant loss of bowel control.

At the AL she was on a regimen of stool softeners, Metamucil caplets, and laxatives when needed. Her medical caregiver asked her every morning about constipation (she'd always say everything was OK) and my mom was supposed to mark on her calendar whenever she had a BM (she'd frequently forget). All this was in place, and yet she managed to let it go almost two weeks before mentioning to me on the phone one day that she was having her "old trouble." I knew exactly what she was talking about and flew into action. That's why depending on the elderly loved one to let you know what's going on may not always work.

The problem with the AL was that they did indeed let people make their own choices. My mom didn't have to eat prunes for breakfast. Or drink prune juice. Or eat the fresh fruit plate. Or eat the green salad. She didn't have to eat a bran muffin every couple of days. Or have raisin bran cereal. By law, they had to administer the medications prescribed by the doctor (stool softeners, etc.) But they could not force her to eat the right things or drink more fluids. That's the danger in giving an elder who has diminished cognitive capacity options. They can always opt out of choosing what is is their best interest.

As a warning, waiting until the elderly loved one tells you they feel bloated or constipated may be dangerous. By then the impaction may be so hard that severe measures are needed, manual extraction or strong laxatives. It's much better to create a good diet and liquid intake program before hand. Expecting a BM every day may be too much (elders usually don't eat a lot); ask her doctor what he thinks. But at least every two days should be the norm. Once it hits three days, you need to act fast.

My suggestion would be to start asking daily. Maybe use a calendar. Put a star or special symbol (not BM -- that's too embarrassing) on the days she goes. Make filling the calendar out part of your daily routine and make it a matter-of-fact conversation. Also, do the old "sniff" test of her bathroom.

Asolo said it correctly. It's "...typically, easy enough to manage -- assuming reasonable oversight. However, the consequences of letting it get out of control can be truly awful."


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RE: A discussion about dementia

"Also, do the old "sniff" test of her bathroom."

Shambo, you're precious. This is really funny....but so very on-the-mark! I do this all the time in my own situation. BM-related conversation is something very few people of my acquaintance are comfortable with. In some situations -- like the ones described here -- it MUST be on the table at all times but, especially with advancing dementia, it seldom is. Mostly it gets avoided entirely or spoken of in euphemisms. If there's a even a slightly discrete way to keep on top of the situation, that's great. The "sniff test" is certainly in that arsenal.


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RE: A discussion about dementia

while we are THAT subject, some high powered pain medication are constipating. It doesn't bother all patients, but when they are taking such medicines for pain, arthritis, etc, the caregiver must be even more watchful. Even when there is no dementia, that tendency to become impacted is increased.


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RE: A discussion about dementia

Absolutely! Mom's been taking oxycontin for more than a decade. (No pain anymore, we're talking about maintenance, here. Can't get off the stuff.) And it's a HUGE deal bowel-wise. Thanks for mentioning. (Why didn't I include this stuff when I wrote the first time? I hope all may excuse me if I refrain from starting a "poop" thread! : ) )


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With apologies to asolo re:poop

I really like this thread...I'm learning a lot. I think that I'm going to just start asking her on a daily basis about BM's. It won't be easy at first, I'm just as embarassed to ask as I know she will be to answer. But we're gonna have to get thru it, and I'm guessing that it will get easier once it's part of our routine. She does take pain meds for arthritis, so I'm gonna have to be more proactive here.
But while we're on this particular subject, I also want to mention that so far we're mostly having kind of the opposite problem - she regularly soils her clothes. We've provided disposables for her, and at first she seemed kind of glad, but when I check how many she has left, I see that she's not using them daily. In fact, she's using them only occasionally from what I can tell. Yet sometimes when we're shopping she'll try to buy more, and then I have to remind her that she still has a good supply of them at home. We already know that she is taking her soiled underwear into the shower with her when she bathes, rinses them out (bless her heart)and then hangs them up in her room to dry. She clearly does not want me to know about this ongoing problem. But since all laundry detail falls on me, I get presented with the evidence in the most unpleasant ways. Not to mention that I have taken to wearing disposable gloves when I clean her bathroom: She regularly gets poop on the toilet seat, the outside of the toilet bowl, the cabinet...It's not that she's missing the toilet completely, but more like she's getting it on her hands, and then touching other surfaces. Last week I went to clean her bathtub and found traces of it on her shower seat. Which makes it seem like now she's not getting clean in the shower either. (Sorry everyone. I know this is gross. You can see why I wear the disposable gloves).Coupled with fact that I have a high level of aversion to human poop and the diseases associated with it, this is definitely taking a toll on me.
Is this lack of bowel control typical ? She takes Metamucil chewables daily, and was taking a stool softener daily until we reduced the frequency of those to every other day.


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RE: A discussion about dementia

Telly, I hate to say this again, but your tale sounds just like my mom's experiences. After her hospitalization for impacted bowels, the doctor put her on a regimen of stool softeners & a very harsh laxative. I guess he wanted to make sure she didn't have the impaction problem again. The difficulty was that she ended up with explosive BMs. She seemed to have lost any ability to control herself. Of course, she wouldn't talk to me about it. But every time I visited her, the AL apt. stunk to high heaven. And her bathroom was exactly as you described. Stains, smears, & streaks everywhere -- on the counter, in the sink, on the toilet, in the shower, on the floor, etc. And damp, barely rinsed out underwear hanging in her shower. Yup! A lot of sanitizing and disposable gloves for me too.

I questioned her about the situation but it was hard to get a clear answer from her. She was no longer able to adequately express what was happening with her body. I eventually made an appointment with her doctor and described what was happening. He took her off the strong laxative and went back to a Dulcolax only if she had gone three days without relief.

As I said before, the end result of the hospitalization, the convalescent hospital, the explosive episodes, and trying to adjust her regularity meds eventually led to significant loss of bowel control.

You might want to take your MIL to the doctor about this problem. Bowel incontinence is definitely a problem in the elderly and especially those afflicted with dementia. But there's always the possibility that something else is going on with her digestive system, something that could actually be treated.

My mother lived with us for a short while, and I totally understand your frustration with dealing with the messes. I always thought that if she'd just stay put and let me clean her up, there might not have been as much work involved. But she attempted to "take care" of things herself, and that's how everything got soiled. Some days I'd spend over fours hours straight just cleaning up after one of her messes.

It sounds like you need to remind her every day to put on a Depends. Have her put on a fresh one in the morning and another fresh one at night. Just part of the getting up for the day and getting ready for bed routine.


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RE: A discussion about dementia

Oh does this bring back memories. I cared for my mil for 5 yrs and all of the above was part of that caregiving.
I might add, fecal matter is getting on everything, be sure to check under their fingernails. I found that often with her long nails that even washing her hands that she was not getting that area clean.
Good Luck everyone. I know how hard you are working. Remember to take care of yourselves along the way and know that when it is all done, you will be glad you did it and you will be stronger in ways that you would never have guessed.
Connie


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RE: A discussion about dementia

Hoo, boy! Looks like I've found common-ground on this topic. Dementia plus bad eyesight plus embarrassment has led to many messy episodes around here, too. I really hate poop but have always done what's needed anyway because there's no alternative. Thankfully most of the time we're OK, but I do dread those infrequent times when things go wrong.

Mom's a total sweetheart and we really do work together very well. She's incredibly embarrassed on those infrequent occasions when I have to intervene but she does understand and allows me to do it. She put up with me for 21 years, so I guess I can handle it.


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RE: A discussion about dementia

Connie K, you're right about the fingernails...thankfully she likes them short, so I trim them for her frequently. I have noticed on occasion that not only her nails, but her hands themselves are not clean. Not poop, just food residue or something. Right now she bathes herself, but I'm starting to feel that blessing slipping away....

Shambo: What shall I say to her about the Depends ? I hate to sound so stupid, but our relationship since she has lived with me has not progressed to the point where we can discuss these things matter-of-factly. The laundry and lack of bathroom cleanliness are not mentioned by either of us, so it will be like I'll just have to bring it up out of "nowhere" (as far as she'll be concerned).


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RE: A discussion about dementia

telly....could you just gradually cause her regular undies to sort of disappear. Then by the time she's down to about two pair, a package of depends could magically appear and then you can suggest using them. Might work, might not..

Just be sure that you have something for her to put the dirty ones in. You don't want her to try to flush them.


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RE: A discussion about dementia

telly,
Oh how I remember the first conversation --was so hard to do, but I finally had to do it.
It went like this.
Frances, I know that during your life you have always prided yourself in being clean and fresh and this is very hard for me to tell you this, but you have an odor that is not nice.
I know that you would want to know, just like I would like to know if it were me. I think it is coming from-------------- and then I went on to discuss how I thought I could help her prevent it.
It was not easy, but it was a turning point. Good luck.
Connie


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RE: A discussion about dementia

Telly, I think Connie gave you a good guideline to follow. The really important thing to remember is that the less embarrassment you show, the less embarrassed she will be. Treat all these "delicate" conversations matter-of-factly. As though they were no different than discussing the weather or what's on TV.

You're going to have to steel yourself to bring up subjects you'd rather avoid. That's simply part of elder caregiving. You discuss constipation, bathroom messes, reminders to use toilet paper, reminders to brush teeth, reminders to wash hands after using the bathroom, reminders to throw soiled Kleenex away -- you name it, you'll be discussing it. Embarrassment & humiliation have to go by the wayside. You simply have to talk about everything in order to properly care for your loved one.

You could broach the subject of Depends by saying you know that she worries about accidents and using Depends would ease her mind. That way she wouldn't have to worry about soiled bedding or clothing. And they're so easy to use, easy to find, and don't cost hardly anything...

Agnespuffin had a good idea too about introducing Depends into the daily routine. And she's definitely right about needing a specific place for disposal. I used a step-on metal trash can with a removable hard plastic liner. It was in the bathroom. Then I lined the removable liner with the scented plastic kitchen bags. I removed the bags every few days and kept them in a small metal trash can in my garage until garbage day. I removed poopy Depends each day and wrapped them in plastic grocery bags before putting them into the step-on can. Our city garbage cans are heavy plastic and leaving the bags of soiled Depends in them for more than a day made everything stink to high heaven. That was my system, but I'm sure you'll come up with a system that would work best for you.


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RE: A discussion about dementia

Yes, I'm going to have to steel myself to talk about these things in a matter-of-fact way.
You know, even though it was said previously that it's not really appropriate to compare dementia patients to children, it's very much like that, isn't it ? All the reminders that Shambo mentioned sound exactly like that to me.
As far as the disposal of the Depends goes, I'm proud to report that when they were first introduced to her, she took the initiative on her own to gather extra plastic bags to put them in before putting them into her plastic lined garbage can. Of course, she probably will have to be reminded about all that once she gets to using them regularly, but that's okay. A small thing to deal with !


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RE: A discussion about dementia

About the disappearing undies.... my mom has actually flushed hers down the toilet causing some major floods in the house. Has done it twice, I believe. So much of what is said here describes her to a 'T'.


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RE: A discussion about dementia

Wow, with all these stories about constipation I'm thankful that's one problem I don't have with my MIL, so far (fingers crossed!). Due to our own health issues we eat big salads almost every night at dinner, as well as lots of whole grains and high-fiber fruits and veggies. That's the one huge advantage of having her live with us - she eats much healthier than she would living by herself.

She loves Wonder Bread, but I've switched us to the Sarah Lee brand of whole grain bread - soft enough for her aging teeth, but high-fiber enough to work.

Again, I really appreciate all the stories folks are posting. It's building a mental checklist for me as my MIL continues to age, so I think I'll be more prepared to deal with these issues.

We're starting to notice that on occasion my MIL will think she's done something, because she thought about doing it. But she actually didn't do it at all. Just the fact that she remembers thinking about it, creates the impression in her mind that it's already done!

The current fight is to change her dentist and opthamalogist to professionals closer to our home. Having to travel 40 minutes one-way in rush hour traffic, over a bridge, back and forth for her cataract surgeries was a huge pain. Between the pre-ops, surgeries and post-ops we made the trip nine times in less than 2 mos. We want to change her dentist before she has a dental emergency - with osteoporosis her teeth are very fragile.


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RE: A discussion about dementia

We're starting to notice that on occasion my MIL will think she's done something, because she thought about doing it. But she actually didn't do it at all. Just the fact that she remembers thinking about it, creates the impression in her mind that it's already done!
Yup, that goes on here also. Usually difficult to convince her otherwise. Works best not to push the issue in terms of "you forgot to do" and approach it as something that needs to be done afresh.

An example of the loss of short-term memory trouble: I called on a recent evening to get her watching the ball game. She already had the TV on.

Me: "Granny, baseball is on, put the TV on Ch 34."

Her: "Oh? Baseball is on? Which channel?"

Me: "Yes, channel 34."

Her: [fussing/mild cursing] "I can't find my gadget [the TV remote]. I had to push the button [on front of the TV, to turn it on]. Hold the line."

She puts the phone down, goes looking. Approx 2 mins, less than 3 mins, she comes back to the phone. I hear the TV turn off.

Her: "I can't find my gadget. Had to push the button again."

Me: "Granny, why did you turn the TV off?"

Her: "Nothing is on to watch."

Me: "Baseball is on, that's why I'm calling. Channel 34."

Her: "Oh?? Baseball is on?? I don't know where's my gadget."

.......


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RE: A discussion about dementia

dadoes - that is all too true! My MIL isn't quite at that point yet, but she's getting there. Here's what happened a few nights ago:

Background: We are moving my MILs investment accounts and had given her two questions to ask her advisors. We had her write the questions down so she would ask accurately. We already have power of attorney, but we do these small things to make her exercise her mind a bit.

At dinner out that evening, I went to the restroom. When I got back my MIL was telling my DH about what she had learned from the phone conversation with her financial advisors.

I came back towards the end of the conversation. I heard the last two or three complete sentences she said to my DH as I re-seated myself at the table. It was clear to me that she had asked the questions accurately and gotten the specific answers we needed.

My MIL then proceeded to say the same sentences all over again, saying, "Oh, I was just telling Carlos...."

I stopped her by saying, "Yes, I heard you."

She was astounded. "But you went to the restroom!"

My DH just stared and said, "Yes, but she came back. Didnt you notice?"

But she hadnt noticed I had returned! Despite the fact that I was directly opposite her, all 235 lbs of me walking up to the small table (a standard 30" square) in broad daylight, pulling out the chair, and sitting back down again.

Yet she completely failed to "see" me.

As its highly unlikely I became temporarily either invisible or so much skinnier (I wish, LOL!) I couldnt be seen sideways, it was clear to both of us that in fact she probably had seen me but because she was trying so hard to concentrate on relaying information accurately to DH, her brain was unable to register that a very large person had just rejoined the conversation.

In a nutshell, that illustrates how dementia has started to shrink her world, as asolo so aptly phrases it in the discussion thread "New here intro & questions".


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RE: A discussion about dementia

I am low on the learning curve re: caring for my dementia-suffering mother. As a retired teacher, I found myself thinking if I held the bar high enough, my mother could/would work to achieve at that level of expectation. Well....now, I am trying to embrace the idea that she no longer thinks, reasons, responds "normally." She would if she could but she can't. Part of me feels like a failure - but I am slowly coming to accept that I CAN NOT change these things; I can just keep loving her. Thankfully, she is a sweet thing and easy to love. I'm lucky.


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RE: A discussion about dementia

bposey-
I think you will find that careing for her will be easier once you come to grips with the fact that this is the way she is and you stop fighting it.
I use to try and tell my mother-in-law that she no longer had a car and we could not go look for it because it did not exist. When I finally stopped that and said, well I do not think it is out there, but I will go help you look, we both enjoyed the walk, (was good for both of us) and she would get tired and stop looking and it was just better for both of us-if I had refused and argued and tried to change her mind, I would have been tired and she would still be looking.
You learn to go with the flow, pick your battles (there are some that you need to win, but most it does not matter).
Good Luck
You will be tired when it is all over, but you will feel good about doing what you can for her until the end.
Connie


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RE: A discussion about dementia

My MIL has vascular dementia. When I read above, "What she has is a diminishing mental capacity, a total lack of flexibility and adaptability to a world that continues to progress beyond what she can assimilate," well, it put into words what I've been thinking. Thanks for defining her situation so well.

She will not let us cut her fingernails. She says she wants to see how long they will grow. Well, it impedes her ability to use toilet paper properly, if you get my drift, and we have to break out the fingernail brush once every few days it seems. Any ideas on how to break this cycle (fixation with long nails)?

Thankfully, her brain reprocessed Depends as underwear. We are able to leave a few pair in the bathroom and she replaces them as needed, leaving the used ones on the floor. Gross, but it's right next to the cat box so I can't fault her too much. Those get tossed every day.

We have had to switch to single-ply toilet paper, though. She uses far too much and the double-ply was clogging the line. So if you are having back-ups, that might help.


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RE: A discussion about dementia

I'll bump this to keep the discussion more current. Lots of good info.


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RE: A discussion about dementia

Does anyone like beets? They are supposed to be helpful for preventing (helping?) dementia.

"Beet Juice Battling Dementia"

A link that might be useful:

www.associatedcontent.com/article/5973410/beet_juice_battling_dementia.html


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RE: A discussion about dementia

I haven't had time to read through all the posts, but just wanted to say that I am relieved to find a forum that speaks to some of the issues I am dealing with regarding my mother.

Like so many other people, my family interpreted the early signs of her dementia as normal aspects of aging. We checked in on her more frequently and tried to get her out & about more to keep her sharp and occupy her, but since this summer her memory and ability to reason has fallen sharply.

I am the person primarily responsible for her well being, and some days it is a real challenge. I am heartened to find this resource, and just reading posts from others who are in my situation helps me know that I am not alone.

Anyone who has not had to care for a loved one who is suffering with this disease cannot understand how hard it can be. Sometimes I cry because I know I am losing her, and sometimes I cry because I don't know how long I can keep up with the constant worry and demands. Some days I am resentful for all I have to do, and other days I'm overwhelmed with guilt that I can't do more to make her more comfortable and less anxious. The only time I am at peace is when I am asleep.


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RE: A discussion about dementia

Looking after a dementia sufferer is a constant and ever-changing challenge. What's particularly devastating is seeing/dealing with contrast of the continual mental deterioration compared to our past memories and joyful times with our loved ones.


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RE: A discussion about dementia

So glad I came across this thread. My 84 year old Mother lives with my sister in a neighboring community, and my sister and her family deal with the brunt of Mom's issues. She fell late last summer and broke her hip, but was more concerned that my sister's kitten had gotten out and wouldn't come back to her that she lay on the lawn for who-knows-how-long before calling my sister instead of dialing 911 for an ambulance. Thankfully it was a nice day outside. Now we deal with almost daily conversations about medical statements and "how will I pay for all this?", even though we have explained to her repeatedly that these are statements and NOT bills (clearly noted across the top of each "This is not a bill"). The situation is rapidly moving in the direction of us totally taking control of her finances. She hasn't driven since early last summer, and I don't feel good about her ever getting behind the wheel again. As I explained to her, her eyesight is failing (cataracts and glaucoma) but more importantly, her reaction time is not what it should be to safely drive.
Unlike telly2's MIL, our Mother really hates taking pills, and I sometimes worry that she's not taking all her medications as she should. My sister helps her with her eye drops, and we've gotten her pill dispensers with the days of the week on them, instead of the numbered holder she had before. I picked up two calendars today for her on which to write her appointments. I will definitely keep reading here for more information. Thank you all for sharing your advice.


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RE: A discussion about dementia

Hello, debby z4....

From what you wrote, I'm suspecting your mother is likely further along in her dementia than you or other family members may acknowledge.

I would advise getting your documents in order (POA, Medical POA, living will, etc.) with the expectation that you -- or someone -- will, indeed, be taking over your mother's affairs. From what you've written, I'm suspecting this time should be now or very soon.

At the very least, I suspect she is likely vulnerable to fraud. I live in a retirement-based community taking care my 98-year-young mom. Several times a year, here, people living on their own are defrauded out of significant sums.


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RE: A discussion about dementia

I'm bumping this up, so the good info doesn't get too buried.


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RE: A discussion about dementia

Regarding the elderly being defrauded and taken advantage of, here's a lesson I recently learned:

My 88 yr old father has advanced dementia, and on a recent stop at his local bank branch he was convinced to cash out a money market account and CD and invest it with their brokerage department. They locked him into a 6 year, low interest product that guaranteed only a 1% return and it cannot be cancelled without a 3% penalty. I found out within 48 hours and tried to reverse it, but the bank said my father signed everything and even though I have financial power of attorney, I can't get the transaction reversed. I insisted that they were taking advantage of a man with dementia and they finally said if I could provide a doctor's diagnosis of dementia along with copies of my parent's income tax return as well as a copy of the POA, they would review the situation. Apparently my father overstated his income (he told them he was still working too) and also grossly inflated the value of his assets. When confronted about the meeting at the bank, my father insisted he had not signed anything and has no recollection of the transaction. This has now been almost a month since I filed all the paperwork and finally spoke with someone at the bank yesterday who confirmed that we would get the funds returned without penalty.

Lessons learned here: 1. I am limiting the amount of money my folks have easy access to. 2. I monitor their checking account online every day. 3. I have arranged for their bills to be sent to me and I have set up electronic banking.

I have them on a waiting list for an assisted living facility, but until then, I must watch everything very closely. I won't go into it here, but they almost got defrauded into giving a roofing company a check for a new roof they don't need. I caught that in the nick of time too. If anyone has any useful tips, please share them.

By the way, I live 250 miles away, so I can't just hop in the car and take them to the bank when they need cash.

Sushipup, thanks for keeping the thread active, it is very useful.


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RE: A discussion about dementia

What helpful information; lots of insights into a subject which is confusing, stressful, and traumatic, too. Thanks for keeping this thread fairly current.


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RE: A discussion about dementia

I too am glad this thread is remaining active. It's now been two years since it began, and denise54's post is painfully similar to MIL's further decline. It is very slow, but inexorable, so we only see the 'shape of the progression curve' when we look back upon the last year or few years.

We handle MIL's investment portfolio but did not want to get involved in her day-to-day expenses. She spends very little, never buys clothes, and one deli sandwich can feed her for three days. She never goes out unless we or a trusted assistant take her, as she doesn't like to be alone.

DH became aware that she had taken out $800/cash for several months, and asked her why. She insisted she had only done it once or twice, but when he looked at her monthly expense ledger - she's very good about keeping her receipts and writing expenses down in it, for trust purposes - he discovered she had been taking out $800/mo for the last 14 months. $200/week is a lot of cash for someone who doesn't buy much beyond a few boxes of Cheerios and toothpaste! She shares household expenses so I buy most of the groceries.

We were concerned about her cash withdrawals because she cannot remember what she is doing with the cash. She keeps her cash receipts, but they don't total $200/wk. She isn't spending it when she's with the personal assistant, and she isn't spending it when she's with us. Either it's being hidden around her room or she's handing $50 bills to clerks and thinking it's a $20, then not waiting for her change.

We're not concerned about the amount, but the fact she can't account for where the cash is going. When someone lives very simply, almost $10K/yr in cash is a lot to be disappearing without anything to show for it. There are no shopping bags full of stuff brought home; no lavish gifts given to friends or relatives because they all live elsewhere. She buys $50 worth of lottery tickets every week, a minor vice. It's a puzzle we haven't been able to solve except by insisting she take no more than $200/month in cash from now on.

When he asked to see her bank statement for last month, it turned out she had bounced six checks in a single month. This is highly unusual for her; we think she probably added in a check she wrote instead of subtracting it. She has a line of credit as overdraft protection which pulls $300 into the checking acct for any OD, so even if she's overdrawn by 25 cents, it will pull $300. This meant she now owed $1800 on her line of credit.

The thing was, you could see six extra deposits in the bank's name for the month. For the last five years her monthly income has not changed: Social Security, company pension, investment firm distribution. She added in the extra deposits when reconciling her bank statement, but never thought to wonder why the bank was depositing $1800 extra into her account that month....sigh.


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RE: A discussion about dementia

jkom, it's all very stressful, isn't it? We just finished up the last of my mother's estate work a few weeks ago. So last week, we started shredding blank checks from her various accounts. It was sad looking at the bank registers. Several years ago her handwriting was clear and steady, and she was busy ordering clothes from Haband. As the years went by, her handwriting deteriorated and she got confused several times. Lots of crossing out and rewriting. Finally, you'll see my handwriting when I had to take care of everything. I paid the bills and managed her checkbook, giving her $20 per week as "mad" money once she moved into assisted living.


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RE: A discussion about dementia

jkom, I'm betting that she has someone dropping in regularly to collect the money. We had something similar. A woman from her church would come to visit. Don't know what she said, but a check would be made out for a couple of hundred every time she came. It was made out to her. Knowing the woman, and knowing my relative, I think she was told it was for the church.

We didn't find out about it until after she went into a nursing home. I was going through all her cancelled checks and there was a pile of them for this one person. One was also endorsed by the church. Needless to say, I didn't want to push the issue.


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RE: A discussion about dementia

Nope, I'm retired so I can attest there is no one coming around to collect money from her. And she's even penurious with her church tithes, doesn't give more than $10/week into the collection box.

The outgo has slowed since DH started going over her accounts with her, sitting down every Monday to reconcile her check register. She is making minor subtraction errors quite often now.

The time is drawing near when we're going to have to take away the checkbook and put her on a monthly cash allowance. She's not going to be happy about that, but won't fight DH if he insists, which he will when it's warranted.


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RE: A discussion about dementia

Sometimes the first clue to an onset of dementia is overlooked. Therefore things get bad quickly.

I remember taking my mother to the bank to deposit her government retirement check. It was taking her a very long time to make out the deposit slip. Finally, I looked. She was writing all over, back and front. It seems that the line that needed the amount also asked for a "description" of check. She took it literally. She described it. Color, spacing of letters, placement of letters, lines, etc, etc. Was this the sane action of a person that had held a responsible position? Nope, it was someone whose thinking had become fouled up. It was then that I really took a good look at her behavior.

How they handle money is important. It needs good control. It may be one of the first things to go as it includes, good judgement, math abilities and memory.


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RE: A discussion about dementia

Bumping this thread so it won't get lost, there's so much good info here.


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RE: A discussion about dementia

Great thread!

Personality changes: shortly after my sweet aunt (age 98) came to live with me, I was helping her wash her hands before going to the dining room table. (She was totally blind in one eye, and could only see peripheral shadows out of the other. She always had stool under her long fingernails). She was putting up quite a fuss: no, stop, why are you doing this, I don't want to use soap, these are MY hands and I don't want to wash....what are we arguing about, anyway? By then, the task was completed, so I said, "We were arguing about you washing your hands. But let's stop arguing and we'll go to the table and have a nice meal". And my sweet aunt said to me, "Well, then, why don't you SHUT UP!!". You could have knocked me over with a feather. She NEVER would have said anything remotely like this before. Hello, Dementia!

Another time, I tried something different. When I got all the usual push-back, I said, "Auntie, I'm happy to help you wash your hands. It's no bother at all. I know it's hard for you to remember to wash up after using the toilet, and because you are blind, you can't see that you have stool under your fingernails". My formerly sweet aunt, in the nastiest and most sarcastic voice you can imagine replied, "Weelll! THANK YOU for that most FLATTERING REPORT!". In that discouraged moment of complete reality, I said, "Auntie, I can imagine that it's hard being old. You always say that Gram said that she wouldn't recommend old age, and you now know why. I understand that you get angry about it. But I'm here giving you my time and attention trying to help you with it, and make it better. So if you want to get angry and lash out at someone, then get angry at God, because I am not the one who made you old. I am the one trying to help you with it.".

Over time, I learned that it was impossible to reason with Auntie. (I was a quick study, and learned that lesson after only 5 or 6 thousand times!). So I would say, "I'm going to give you a nice manicure". Then I would sit down with a bowl of warm soapy water, and clean her nails; I totally ignored her protests and questions, but would say calmly and pleasantly, "
Good job! Now let's move on to the next finger. We'll be done soon". After cleaning, I would take out the clippers and start clipping. Of course she would say she didn't want them cut, that she did not like them short, they were HER fingernails, etc. I just ignored her, stayed pleasant, and got through the task.


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RE: A discussion about dementia

Absolutely. Conditions will deteriorate such that one often cannot ask the dementia sufferer any questions about anything and get an answer or cooperation.


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RE: A discussion about dementia

My moms 72 year old husband was diagnosed a couple of months ago with Alzheimers, they have sinced changed the diagnosis to Vascular Dimentia. Yes, it seems as though things are progressing at a rapid pace but somewhere deep down I'm sure we missed somethings and this has been going on for quite some time. First it was secretly ordering things during the night time hours from infomercials, then hoarding the mail. Not taking care of his insulin and giving himself the correct amounts. From there, his license has been taking away and he requires 24 hour monitoring. Last night he did wander from the house during the middle of the night in cold Wisconsin. My mom didn't realize he was gone until about 4:45 am. A timeline from the police puts him leaving the house around 11pm. Fortuneatley he was found about 10 hours later, cold, exhausted but alive. We are now looking at door alarms and help.


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RE: A discussion about dementia

Very interesting reading. I noted the following:

1. Posters apparently seem to be predomonantly female.
2. Posts with only 1 exception deal with a female parent (only one Dad).
3. All posts deal with parents or grandparents.
4. None deal with caring for a spouse.

That is what I do and believe it involves a whole different personal interactive dynamic.


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RE: A discussion about dementia

OOPS 2 Dad's; :-)


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RE: A discussion about dementia

MX, it's true that most of our posters are female. This forum pretty much mirrors society. Women predominantly handle care-giving duties. That said, we do have at least one frequent contributor who is male. We also have some who are caring for spouses. I agree that caring for a spouse is different from caring for an elderly parent. But many of the issues are either the same or quite similar.

We've had lengthy discussions regarding dealing with dementia, how to handle Medicare/Medicaid issues, and the different kinds of professional help choices available. In addition, we've discussed issues like incontinence aids, dietary restrictions, etc.

I believe our main goal is to encourage each other in our care-giving tasks. We know how difficult it can be and the strain it can place on the care-giver's physical and emotional well-being.

There are other care-giving forums available and perhaps one might deal specifically with care of spouses.


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RE: A discussion about dementia

bumping to keep this to the front for those still or newly dealing with the care of aging parents


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A request

I had posted this as a separate thread and someone suggested that I copy it here so it could be seen as part of the dementia discussion.....so here goes!!

Very often, posters will come here about their problems and mention that "he/she is still alert." Therefore, dementia is not a problem.
Alertness is not the problem. They can still be alert, carry on a conversation, keep track of the money, bank book, etc. BUT, somewhere along the way, they have lost a sense of logical thought, common sense and decision making. And that is the problem...not lack of alertness. That's when they can get to cause problems.

When your loved one starts to do things that are really not the sort of thing that a clear thinking person would do, you should start watching more closely. It may be a few years, but that's a danger sign. It's an alert, but muddled mind.

I have used my mother as an example many times. She was an intellegent, alert person, but there were many weird things. For example, she was the head of a big accounting department...intellegent, right? OK, one day she went out an bought a case (yes, a big box) of toilet bowl deodorizers. Brought them back to the office and gave them out to her employees. Yes, things were beginning to go wrong, but she was still "alert" That was not the action of a rational person.

That year, she gave me two bras for Christmas. One was a 32-A and the other was a 40-D. She couldn't see what the problem was...they were adjustable. She showed me how to move the thingie on the straps so they would fit.. Alert, Yes. Common sense? No. She also had a pair of my shoes from when I was about three years old, silver plated and gave them to my oldest son to take to college. She said he could use them to put pencils in. Not your usual sensible thing to give a boy going off to college.

I could go on and on about this...she was capable of ordering her husband's medication...and then she hid it. When she went to a NH, we found bottles and bottles of pills and liquids hidden all over the house.. She even put them in places where she would need a chair to climb up on. Alert? Yes.

So, forget about your loved one being "alert." Dementia could still be starting. The sooner you recognise the problem, the easier it will be to cope with it.


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RE: A discussion about dementia

I've been checking this "Caregivers" forum for a few months, now, but hadn't seen this thread till today. It's comforting and distressing at the same time to read about other folks situations. It's almost too much to take in at one reading; I'll come back and read some more, often.

One poster mentioned trying to treat her MIL with kindness and respect. Those two things, plus the safety of the individual, are the main factors I learned from a discussion group I attended, last Oct. I'm trying to keep them in mind all the time. I also learned three things to eliminate from my vocabulary: "I already told you that"; "Don't you remember?"; and "You've already told me that". I'm working on them, but it's hard for me, too, and I know it's going to get harder as time goes on.


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RE: A discussion about dementia

mwheel....try thinking of it this way...

To the individual, the caregiver is a stranger. Therefore, things like the phrases you mentioned ("I already told you that") seem to be a falsehood. Then, the patient becomes more confused because they don't understand why you would lie.

Soooo, since you are a stranger, treat the patient as one too. They are NOT the person you knew. They have changed. Don't say things that you wouldn't say to a stranger. "Don't you remember" is as meaningless to your loved one as it would be to someone that you just met.


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RE: A discussion about dementia

Agnes, thank you; that's good advice. While my situation hasn't reached the point of being a stranger, I'll remember what you said and try to bite my tongue before asking "Don't you remember?"


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RE: A discussion about dementia

i am 47 married with children my mother was brought to the hospital because they said that she is not making any sense my friend says it sounds like she has dementia.my mother thinks that i am 13 and im a scared little girl so she told my sister to bring me to her. how do i deal with that my sister told her that im not a little girl that im home with my husband and kids.should we correct her or go along with what she says?


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RE: A discussion about dementia

What would be the point in correcting her?

Take the easy way and go along with her. It's her view of reality. Tomorrow may bring an entirely new idea. In her mind, you might be getting ready for your wedding tomorrow.

Just smile, and talk about something else.


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RE: A discussion about dementia

My husband has Multiple Sclerposis with "Alzheimers-Like" symptoms. We'll discuss things, like I'll say I'm making chicken tonight, then he'll ask later what's for dinner. I say "I already told you, chicken. Don't you remember?" He takes this as a challenge, says I'm mean and he's going to divorce me. Yeah, right, and how are you getting to the lawyer? He also watches TV, sees those informercials and wants to order stuff. I caught him on the phone once ordering special pillows. We already have plenty in the linen closet.


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RE: A discussion about dementia

I can relate to the ordering of stuff from the infomercials. My mom's husband went through that for about 6 months. Had to get the mail daily and then he hoarded it. He was up at night ordering things and the worst of it was when his name was sold to numerous "charitable" organizations. There were so many scams that he could have really caused allot of financial problems for them, fortunately those days are gone now. He doesn't remember any of it and just going to the mailbox is now out of the question. We are now experiencing the television shows he watches during the day, becoming his reality at night. They watch show's like the Waltons and Little House on the Praire, recently there's been a couple of episodes with fires and those have become his reality at night, insisting the house was on fire. It got so bad mom had to call the police for assistance getting him inside. We are now looking for permanent placement as we have to be concerned with his safety as well as moms.


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RE: A discussion about dementia

My grandmother, age 92, has the following symptoms, among others:

When asked a question, she answers either 1) in the negative; 2) with a question; or 3) silence.
Do you want some tea? "I don't have any tea." (A full pitcher is in the 'fridge.)
I brought a hamburger from town, will you eat it? "What kind of hamburger meat? It's not cooked?"
Did church come? "No." (They did, there's a new weekly bulletin on the table.)

She cannot follow verbal instructions, on anything. Tell her to go to the bathroom or kitchen or bedroom to do whatever, and she's typically confused on where is the bathroom or kitchen or bedroom. Lead her through putting food left out into the refrigerator, she can't do it. Or drying and putting away dishes, she doesn't know where is a dishcloth or where to put away the items.

I spent 15 mins one evening via telephone trying to get her to check what is the date/time on a clock that's always on the table beside her chair in the living room, where she sits when talking on the phone. She could NOT do it. Confused the table with the kitchen table. Confused the clock with the telephone. Said she doesn't know what is a lamp (when directed that the clock is next to the lamp on the table by the chair where she is sitting). She's not always quite that bad. I forgot my keys this morn, called her to come open the door (she occasionally doesn't hear the phone) which she did without trouble this time.

But, she can find the bathroom herself when nature calls ... or go to bed when she's tired ... or to the kitchen if she's hungry or thirsty.

She doesn't know how to cook/heat/prepare food. Takes ice cream bars out of the freezer, leaves them in the refrigerator where they melt. Takes frozen food out of the freezer, tries to take a bite (pot pie, pizza Bagel Bites, waffles) which doesn't work, puts it in the refrigerator where it thaws until I find it later.

There are prepared plates and containers of cooked food that only need heating (caregiver comes 8 am to 1 pm, Mon-Fri to cover b'fast & lunch and make the plates for later) but she won't eat it unless someone else heats and presents the food, she won't do it on her own. Instead goes for canned fruit, fresh fruit (peelings left in the sink), lots of bread/toast and jam or syrup (she's diabetic, and cannot understand why it's bad when she wants to eat only these things and not the meat/veggie plates).

She is constantly pulling (and literally shredding/rending) tissues, and pulling paper towels for drying her hands or wiping things. She cannot get a grip on using the large supply of dishcloths and towels ... possibly because they're in a drawer and the paper towel roll is visible. However, if I place a cloth towel beside the sink and explain to use it instead of the paper, she still won't do it ... the towel ends up wayyy on the other side of the kitchen away from the sink area and she's pulling paper again.

When she does put something in the refrigerator, it's either unwrapped / open on a plate or bowl ... or she wraps in a paper towel, or a coffee filter (which coffee filters are in sight, kept on the countertop).

She cannot keep track of and use her cane for walking assistance. It's always tossed in the corner of the bathroom. Home health and physical therapy advise she is much steadier with the cane, have run through several regimens of therapy ... she won't do it, and she refuses to keep up with the exercises, is getting progressively weaker. She fell several months ago ... precisely as I walked into the house to check on her early-morn med dosage (which I do every day). Home health nurse was coming at that time as a follow-up to an after-Thanksgiving bladder infection that went mildly to septicemia. A PT regimen was initiated when they heard about the fall ... which she improved at the time but now has regressed again.

She has developed a tendency to sit in the dark.

Last few weeks she has taken to sometimes not wearing her glasses ... which is a potential problem coupled with not using the cane and sitting a darkened room.

Etc.


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RE: A discussion about dementia

@dadoes.....

Thinking you surely realize your GM's in a bad way. From your description, she shouldn't be left alone.

Except for the dementia, healthy otherwise? Mobility without sense is a bad combination.


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RE: A discussion about dementia

An update:

MIL's dementia is progressing more rapidly over the last year (my first post on this thread is dated May 28, 2009). My DH and I have met recently with the personal assistant/friend who helps drive her around, to discuss her increasing mental decline.

Once able to manage her own appointments and schedule, she can no longer do it without stressing herself. She was grateful when she was told DH would take over all her appts - well, actually it's me, but she accepts it better from him since he's her son.

DH now goes over her checking account statement weekly instead of monthly. She's making so many small errors, it takes him too long otherwise to straighten out her checkbook. She is still very resistant to our taking over her daily finances, but the end is clearly coming.

The latest example of her increasing dementia happened two weeks ago. I often go out and garden, as it's my hobby. We have an alarm system, and the rule is that every time we go in and out, the alarm is always set on again. We already had the alarm system when she moved in with us in 2006, and she had a very similar alarm system on her own house for twenty-five years before selling it.

We each have a keyring fob, which are remotes for our ADT alarm system. She uses hers EVERY DAY, without difficulty. This way she can turn off or reset the system without needing to remember a passcode and which button to push.

Twice within a week, MIL has needed to talk to me, thought I was outside, rushed to the front door, then realized she doesn't have her alarm fob with her.

She knows I always have my keychain fob by the door. So she tried to use my fob - but instead, set off my car alarm both times!

She is now so deaf that even standing at the front door, with my car alarm going off in that obnoxious manner they have, less than 20' right in front of her....she cannot hear it and has no idea what she's done.

Here's a photo of my keyring. The colors are off (cellphone photo, sorry); the house alarm fob is actually a very bright blue.

Despite the fact she has her own alarm fob and can operate it without difficulty, faced with someone else's keyring, she can no longer tell the difference between a square bright blue fob and a round black fob:

Photobucket


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RE: A discussion about dementia

I'm bumping this thread because someone in another forum needs it, and it had sunk down to page two. Too much info here to lose!


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RE: A discussion about dementia

My 79yr old aunt has what I think is Lewy Body Dementia. During July, August, and September, she had episodes of vivid, disturbing hallucinations (bird people, small child-like beings, and once, a man on a white horse inside the house), and capgras delusions, when she described her house as 'my house, but different from my house. My house has a basement and an upstairs--this house has a downstairs and an upstairs.' Her confusion was mostly at night, when the light and shadows changed, but seems to have improved in the last few weeks.

Not long after her hallucinations started, I took her to the optometrist to have her vision checked, thinking that might provide some answers, and she had been told that she should have frequent exams for glaucoma. We live in So.Ohio--when we were a few blocks from the doctor's office, she asked if we were getting close to Kentucky. I thought, "Uh-oh, a few minutes ago she knew we were going to the optometrist. Now she thinks we're going to Kentucky." Before I could decide how to answer, she became agitated, and said, "Would you please answer me?! I hate it when people don't answer my questions!" When I told her that I was just wondering why she thought we were going to Kentucky, she said, "KENTUCKY FRIED CHICKEN! It's next door to the doctor's office!"

Her question was perfectly logical--to her.

She also has problems with constipation, balance, gait, and posture. It's heartbreaking to see an almost blank facial expression, when she used to be so animated and funny. She knows something is wrong, and is often frustrated when she can't recall a simple word or name, or can't remember details from a recent conversation.

She has an appointment with a neurologist in a few weeks--we had to wait several weeks for an appointment with a social worker (?), who then recommended that she see the neuro. I've read that a definite diagnosis for LBD can be made only post mortem, but the symptoms seem to point that direction (IMO). My aunt was so relieved when her doctor's NP said that she didn't think it was Alzheimer's. She has no idea what LBD is.

Update December 4th.
My aunt was indeed diagnosed with LBD, by the neurologist, who prescribed Excelon for memory/cognitive problems and then a few weeks later, Seroquel/quetiapine for the hallucinations. I have to back up and say that my aunt's family doctor had prescribed Seroquel on a recommendation from the social worker/counselor (I still don't know her title) at the time she made the neuro appointment. My aunt had resisted taking the Seroquel at that time, after reading the side effect warnings that came with the prescription.

After a followup with the neuro, Aunt B finally agreed to try the Seroquel--her hallucinations were not going away, and were exhausting her. She took 25mg/day of Seroquel for a week, then increased to 50mg/day several days ago. I know that quetiapine for dementia patients is somewhat controversial, but my aunt has had two peaceful, wondrous nights without hallucinations or capgras delusions. Celebrating might be a bit premature, but these horrible, frightening hallucinations had become an obsession, and the primary focus of her life.

When she initially refused to take the Seroquel that her family doctor prescribed, the doctor prescribed a low dose of Celexa (10mg) for anxiety, which he has since increased to 20mg, at my aunt's request. Aunt B is no longer terrified to stay in her own home, and other than feeling slow and 'groggy' at certain times of the day, she is functioning as she was before the crisis. I've read that Lewy Body dementia is very unpredictable, so we are counting our small blessings, keeping a close watch over her.

Although the neurologist told her that she suspected LBD, my aunt still has not expressed much interest in exactly what the diagnosis includes. I told her that if she ever has questions, I'll try to find the answers. I want to add that I don't consider myself a caregiver, and I have respect and admiration for those of you who are, 24/7.

This post was edited by mama_goose on Wed, Dec 4, 13 at 12:55


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RE: A discussion about dementia

My husband has labile emotions, meaning he laughs and cries easily and inappropriately. No impulse control. It explains why he'll say "I hate you. I'm getting a divorce" and then ten minutes later grab my hand gently and say "I love you."


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RE: A discussion about dementia

I recently took a 5-week MOOC (massive open online course) from John Hopkins University. The title was "Care of Elders with Alzheimer's Disease and other Major Neurocognitive Disorders". Although geared to professional caregivers, it was open to all. I read everything I can about dealing with dementia-impaired seniors, but I thought taking the class would be informative. And it was!

A MOOC is an online course aimed at unlimited participation and open access via the web. I found out about it from the endlessly useful New York Times' New Old Age blog. Most of it was lectures and Powerpoint slides, along with some quizzes and a very active discussion forum.

The course was aimed at "non-pharmacologic" interventions; that is, instead of using drugs (none of which, I was surprised to learn, have been approved by the FDA for treatment of general dementia), the intent was to focus on helping the caregivers understand how the physical environment and inability to clearly communicate, can adversely affect dementia patients.

There were wonderful examples of how to simplify the visual environment, increase safety, and recognize the importance of what the senior can still do, not just fixate on what s/he can no longer accomplish/understand. There was a lot of information about neuropsychiatric theories (as the non-prescriptive approach is called) with real-life case studies used as examples of successful intervention, allowing a dementia patient to either continue living at home or to gain a better connection to the outside world, preventing depression and relieving anxiety/stress.

JHU is planning an expanded version of this on-line course next year. I don't think I'll take it -- we recently moved my MIL, who has mild dementia, to a wonderful retirement facility nearby. But although some of the course was geared towards professionals, I thought it was very valuable, especially on certain topics:

-- Support for the caregiver -- options/resources
-- Safety issues
-- Communication issues
-- Focusing on the positive, not just the negative
-- Keeping the dementia patient actively engaged to encourage a sense of self
-- End of life and legal issues


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RE: A discussion about dementia

Extremely helpful thread - I am a 74 yr old daughter caring for my live in 100 yr old father; he can still shower/dress/feed himself but has many neuro type issues.

If anyone is caring for a spouse, I strongly suggest checking out Wellspouse Association.


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RE: A discussion about dementia

We are dealing with my father who has had signs of vascular dementia for a few years as in being forgetful. He has some health issues which has landed him the hospital with an infection in his leg which traveled through his blood stream. He has been so weak, he can no longer walk and get to the toilet without assistance. Up to a day ago, he had a pick line with antibiotics still. He was sent to a rehab hospital where he refused medication, refused rehab and pulled out his pickline. He wants to go home, but my mom can not care for him at home. He was discharged to a skilled nursing center with an excellent rehab facility on Friday night and we have hired Home Instead to have people sit with him at night. He is extremely angry, uncooperative, threatening to take us all to court because he wants home care at home. He is cussing out the Home Instead people at night and calling us at all hours of the night asking why he is there and is unable to hear any logic due to paranoia(we are all out to get him) and/or stubbornness, but until he starts cooperating, it's hard to get him home. Such a catch22. Just looking for advice. I live out of town and for the last few weeks, I have been going up to support them, but it is wearying. Not sure if this is dementia or he is just being self absorbed.


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RE: A discussion about dementia

What a wonderful forum..I am forwarding this to my best friend, whose husband has just been diagnosed with beginning Alzheimer's. So far it is just forgetfulness and she is hoping that medication will help. Does anybody know if medication will help at all? They think it will stop the progression but I am not sure. Don't know how fast it will progress. He seems normal to his friends, but they both decided to go to the doctor, neurologist, etc. to have it checked out. I am praying for both of them.


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RE: A discussion about dementia

My husband took them, they did not help him. Then he started complaining about his stomach when I told the doctor he just shrugged and ignored me and he knew that was a major side effect. His blood count was 6 before we realized something was wrong. He had been passing blood in his urine and from his bowels. They gave him 5 pints of blood. Later when I moved and found a new pharmacist he told me that none of the AZ meds have been tested or proven to help.


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RE: A discussion about dementia

The problem with the AZ meds is that If they work the process does not advance. There is no way to know if they are working only that the are not working. If they work they will only work for a while. Each person's time is different. My husband has AZ and we go to group sessions twice a month if we can. One thing I have noticed is that when the down turn happens it happens quickly. Several people have gone from functioning to nursing home this year.

The thing for your friend to do is to start planning as if her husband has already died. Find what she needs to do to put things in her name especially the utilities that will continue. She also needs a durable power of attorney. She and her husband need to have a real conversation about what to do when the health deteriorates.

Good luck to them. Living it truly is living day by day.


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RE: A discussion about dementia

My husband did not want to live with AZ so we got what we call a comfort care order. The name may be different where you live. It is like a living will, except it covers meds to keep one alive. If he got pneumonia they were not suppose to treat it. Only pain pills or tranquilizers if needed. I have that for myself also. My final plans are all in order for when the time comes.


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RE: A discussion about dementia

He has got to be induced to make any legal decisions or changes before becoming incompetent. Past a certain point nothing can be changed.

For example our holdings are all JTWROS and a month ago I tried to create a trust but cannot because my wife is not competent to change her will or release the JT. Shuda did it long time ago.

As I write this she is having a good time talking to her girlfriend in the mirror.


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RE: A discussion about dementia

mxyplx didn't you have the signed papers that gives you the right to make these decisions?

We had those made before we were even close to to any signs of bad health. As circumstances change the papers were adjusted.


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RE: A discussion about dementia

Nope.


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