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.

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. Factors—some positive, some negative—range 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."

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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."

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.

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.

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.

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).

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.

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.

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.

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!

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."

.......

Background: We are moving my MIL’s 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. Didn’t you notice?"

But she hadn’t 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 it’s highly unlikely I became temporarily either invisible or so much skinnier (I wish, LOL!) I couldn’t 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".

I actually keep a short journal of episodes that have happened as we notice my MIL's gradual decline. Her doctor says she's still good compared to his other, more frail patients, so having the journal really helps us identify problems when we talk to him.

I always strongly suggest getting in touch with your local Alzheimers Association or at least checking out their website. In my area they hold classes & have support groups. The clases were a Godsend to help make sense out of the senseless. My heart goes out to all of you who are dealing with this. I guess that's why they call Alzheimer's "the longest goodbye".

Since most people's experience with child-like behaviors is, in fact, with children, the likelihood of mis-understanding this characteristic is huge. It takes some getting used to. Typically requires a mental adjustment of the care-giver to work with it effectively and to avoid frustration and aggravation. It's a different world. For them and for us.

Sure, my FIL is 95, with rheumatoid arthritis and Chronic Lung Disease, but a couple years ago, he was sharp as a whip. He was a funny man, full of energy. Now, he seems lost in our own home. Everyday, he has to ask where the washroom is. Due to his age he is physically slowing down, and has to be reminded to use his walker. But, even though he is slowing down physically, he still on occasion gets up bright eyed and bushy tailed at 3AM, ready to go to work! He has no problem getting down the steps and out the front door. It only happened once so far, that he got as far as the front step, but scared us too death. I can see what is happening to my FIL, but my husband only sees an aging man. My husband gets easily frustrated over the confusion, and I'm sure my FIL is well aware of the tension.

Dealing with dementia on a daily basis is very difficult, and I really don't know to what point, we can care for my FIL at home. We are just taking it day by day, and hoping for the best. My fear, is that when we reach the unknown "point" when dad needs to be admitted to a nursing home, he will not be accepted due to high waiting lists. I asked my husband is he had dad assessed, or put on a list, but he just told me that he was pretty sure the medical system would work in our favor if things got really hard for us at home. I beg to differ, but what do I know.

In my mind, the point in which we could not care for dad at home would be when it becomes a physical struggle. If dad looses mobility, and cannot get in and out of bed by himself. But then again, I think that if that time comes, we would overcome obstacles and work something out. He is already incontinent, and we are dealing with it. That was the "point" a couple years ago. As a family, we just band together, and work through life's up and downs and somehow find the strength.

Just need to share some personal thoughts on this topic. It is very difficult watching a parent decline, but I think we all have an inner strength that just gets stronger as the days pass.

However, once I accepted the fact that she was suffering the effects of dementia, I was better able to handle her newly developed personality quirks, memory loss, off the wall comments, etc. I no longer took things personally nor was I as frustrated because I realized the disease created these limitations. Actually, recognizing the dementia gave me a lot more peace. I could accept the situation as it really was. I could enjoy the moments when she was more alert and "with it" without getting upset when she drifted back into her own world again.

Although this does not directly touch on onlyone's issues, I recently read this article on the failure of most medical practitioners to properly treat dementia patients for End-of-Life care. If you yourself have not filled out the POLST form and given it to your doctor, please do so. This form, the Physician's Order for Life Sustaining Treatment, gives very specific instructions to your family and doctor about what kind of EOL treatment you wish for yourself. If you Google POLST you'll find a downloadable .pdf 1-pg form that you can fill out. Note it should be printed on colored paper (I used tan, it was all I had) as the form needs to be easily identifiable in a folder full of medical records!

(paragraphs are excerpted from full article)
Treating Dementia but Overlooking Its Physical Toll
NYTimes October 20, 2009

Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.

The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.

The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. A new study suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.

Advanced dementia patients are particularly prone to infections because of incontinence, risk of bedsores, a depressed immune response and inability to report symptoms.

When the investigators looked more deeply into the reasons for treatment decisions, they discovered stark differences based on what family members knew about dementia. When they understood its progressive and terminal nature, only 27 percent of the patients received aggressive care. For family members who did not understand the disease, the figure was 73 percent.

"Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care," said Dr. Susan L. Mitchell, senior scientist at the Institute for Aging Research of Hebrew SeniorLife in Boston.

The study also found that pain control was often inadequate. One in four subjects were clearly suffering from pain, but that number may understate the problem, because the patients were unable to talk about their pain.

Dr. Greg A. Sachs, chief of general internal medicine and geriatrics at Indiana University School of Medicine says doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care.

"We’re not talking about aggressive care versus no care," he said. "Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It’s not any less excellent care."

And, yes, dementia needs to be considered a physical illness not just an illness of the mind alone. One by one the various systems begin shutting down. It may take a while and it may not be as visible as other illnesses, but it's happening, nonetheless.

Mary