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

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.

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

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

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.

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.

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.

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.

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

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.

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

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.

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.

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.

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.

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.

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

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.

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

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.

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.

OOPS 2 Dad's; :-)

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.

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

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.

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.

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.

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?"

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?

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.

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.

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.

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.

@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.

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:

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!

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.

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."

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

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.

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.

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.

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.

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.

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.

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.

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.

Nope.

Bumping this thread up for people looking for more info.

emma

Forgot about this old thread. A trust has been accomplished. By a senior type lawyer. Very thorough. All legal and above board. Don't ask how. Just don't.