is this dementia or alzheimer's???

brookyNovember 21, 2006

PLEASE HELP! My mother-in-law started forgetting peoples names about 5 years ago. My daughter and I had noticed this getting progressively worse and my daughter tried with no success to get her to the doctors as she pointed out that there are medications to help with this. It hurt her to see her grandmother possibly getting Alzheimer's but not wanting to do anything about it. No, she wouldn't go to the doctors. She lived alone as her husband had died as well as both of her sons, one of them my husband when he was quite young. She lived in a very rural town with no relatives near her. So, this was a concern to me. My x-sister-in-law lived 40 miles from her but was not in our family anymore and didn't want the burden of checking in on her any longer. One day about a year ago, I called her and she could barely talk. I thought she may have had a stroke since I had just spoken to her the previous night and she did fine with the exception of forgetting names. My x-sister-in-law said she had gone over to her house and discovered her like this so took her to the hospital where they didn't find anything wrong. She didn't lose her speech for a long time; maybe a couple months and each week she actually got better. That was the only thing that I would say side tracks this story. Other than that, she is simply forgetful but no more so than she was 5 years ago. I couldn't take letting her stay in her house alone anymore so I flew to where she lives and we put her house up for sale and brought her back to live with me. But while I was at her house, I saw that she had been eating a can of the same soup for the past several days. She had no decent food in the house, most of it past dated, and was quite thin. She didn't seem to know how much money she had. When her friends would call her on the phone she would sit and talk to them like, "Oh yeah...or really?" "Oh my gosh, I can't believe that." "What did you do then?" She talked like she completely understood the whole conversation but when she hung up and tried to tell me about her visit with her friend she couldn't explain it. Since I've gotten her here with me now she is the hardest person in the world to live with. If you're giving her instructions about something she says, "Oh..ok then." Such as "Mom, you need to take this pill with your lunch, ok?" "Oh...ok then." You walk back into the room and she didn't take it. "Mom, you were supposed to take this pill I laid out for you with your lunch, remember?" "You didn't tell me to take that." She is 3/4 hispanic but has never watched hispanic TV in her life and now she starts watching Spanish nuvelas when she wakes up at 9 a.m. and doesn't turn them off until 10 p.m. In my living room. She lays on the couch and won't get up for anyone to sit on the couch. We have to ask her if she can scoot her legs over so we can sit down too. If the cat jumps on the couch she says, "Ouch!" "That hurts." Over two heavey blankets. "Get off of here." And she kicks her off with her foot. When we go to the doctors and he walks in the room he'll say, "What are we here today for?" She'll say, "I don't know." "I feel fine." "She told me we had to come." "She can't count change back. If something costs $4 she gives the clerk 2 $20's. She can't cook anymore because she can't remember how. She can still make oatmeal for herself but nothing else. (I think that's from habit and it seems to be the only thing she remembers.) When my stomach looks a little full after dinner she'll tell me I look pregnant and when is the baby due? If I say, "Oh, I have to go to the bathroom, she'll say, "Well, you better hurry up then." She looks out the window all the time and tells me there are sure a lot of clouds in the sky day after day. If I take her with me to the store she'll say, "Look at all the cars, look at all the cars, look at all the houses, look at all the houses." She never wants to leave the house or the couch. She fusses everytime I make her go with me somewhere. She'll come up with every excuse she can think of not to go.

I've had to leave on business trips a few times in the last 8 months that she's been living with me so I took her to her neice's house. Each time she was there for about 2 weeks at a time. She was able to actually be with several of her family members each time I've taken her there. None of them have noticed one single thing wrong with her. They tell me I'm exaggerating all of this as they haven't noticed any of the things I'm talking about. They told me she does great over there. Not forgetful, except forgetting names sometimes. They tell me that she does fine. They say they have no problem getting her to go anywhere with them and that she visits with all their neighbors when they do. (She never talks to anybody around here and has told us that it makes her very uncomfortable to talk with people because she knows she stumbles on her words.) I'm so confused. She's highly sarcastic, says critizing things constantly to us. When she was younger, I can remember seeing her watch television and saying someone was a dummy because they did this or that. Now she calls us a dummy when we do something we shouldn't. Like bumping our knee on the table, etc. "You dummy." "You should look where you're walking." She never makes a comment the whole time her Spanish Television is on but if one of us turns something on the TV she'll sit and constantly bad mouth everyone on the TV. "She's so ugly." "Look at all the black people." "I've never seen so many." "That person's a queer." It doesn't stop. She can talk like this all day long and if someone comes over to visit later in the day, you'd never know she was forgettful or sarcastic at all. She does a 360 degree change immediately and becomes the most respectful and loving person you'll ever see. She sits up on the couch and almost sits like a model with her legs neatly to the side and converses like nothing was ever wrong with her. THIS IS WHERE WE'RE CONFUSED. How can she do this when she's completley gone the rest of the time? This must be the side of her that she shows around her nieces and other family members. But HOW CAN SHE PULL IT OFF if there is really a problem? I'm soooo confused! She can pull it off for 2 week periods too. Please help! Is there anyone out there that can understand this. Any help is so very appreciated. Many thanks!

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There's something wrong, that's for sure. Alzheimer's is just one type of dementia. And usually they can't "improve" their behavior. But it's a strange disease and anything is possible.

However, it could be something that could be helped. One thing occurs to me is that she isn't eating right. Then, when she goes to stay with someone, gets proper food, it helps her functioning.

I don't know how you will get her to a doctor. It may be that things will have to get a lot worse before you can step in and do anything.

Good Luck!

    Bookmark   November 21, 2006 at 9:05AM
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Hi Brooky,
I cared for my mil for over 5 years. She had a type of dementia and I did not have the nasty comments but I often saw her change from the person who could not do anything or remember anything from the current time to a person who could visit with someone who came into the home. Of course if you ask her later about it she remembered very little.
Do you have Medical Power of Attorney. If not you need to work at getting it.
I use to take my mil to the Dr. and when I did (because I had M. P of Att. he would let me ask questions ( I always did this in a written form and hand it to the nurses on the way in, so he had time to look at them before coming into the room. I never ask more than two questions at a visit. I would often also make a statements about what I was seeing her do or not do and he would take it from there. I found if the gen practitioner told her to see another Dr. I did not have a problem, if I said I think you should see a specialist--I got no where.
I found she reverted very much to her childhood as time went on.
She would talk about her childhood as if it was this morning,
She often wanted to put on a piece of clothing that was from her childhood. She must of had a type of hat that she wore at night, and I often would go around about that at bedtime.
I encourage you to take it one day at a time, get help to stay with her so you can get out and remember, that when it is all said and done and in the past, you will feel so good that you have done what you can for her.
Take as good of care of yourself, as your are of her--This is very important

    Bookmark   November 21, 2006 at 1:03PM
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Yeah, there's something goin' on. As I've understood it, the only way a firm diagnosis of Alzhiemer's can be made is with necropsy... only then can the heavy placques in the brain be discerned. But I could be misremembering.

Mum suffered a stroke in '04 and it was in the right parietal lobe of her brain; affecting short term memory and critical decison making. As it was explained to me, she is the perfect example of LEAPING before LOOKING. She often failed to THINK about a course of action. Now, her dementia has progressed to a point where she no longer really attempts a lot of things on her own.

She never knows what day it is. She doesn't know what year it is. But she knows her birthdate, can name her (now deceased) siblings and all her immediate family. She can't always name my brother... and is often confused about who, exactly, he is... confuses him with my deceased father or my husband frequently. She can't name the cats in the house or the dog, but she identifies them by their individual physical characteristics. She has no clue about money any more, either! She reacts the same way at the doctor's office, too.

You need to establish medical and legal POA, asap. And you need to esptablish a routine for her. You do the same things at the same time everyday and you ask questions that require her to THINK and guide her to the result you want to see. For instance: every morning I go down to Mum's room, turn on the lights and open the draperies. I wake her up with, "Good morning! it's time to get up". Then I sit in the chair and allow her to "come to". Next, I direct her to the written instructions for unhooking her urostomy from the night collection jug. I prompt her and she usually does it flawlessly. Then I clean and disinfect it. Then we make her bed together, I lay out her clothes for her, and prompt her to wash her hands, face, and fix her hair. And get dressed. I leave her alone to do those things. If I don't hear her coming to the stairs in 20 minutes I go check. Then she has breakfast. We do it the same way, every day. Drives me NUTS, but it works for her and I know the military regimen helps keep her safe.

I put the kibosh on the nastiness early. SORRY! I won't live that way... Zoloft has spared me the commission of a felony, lol. Speak to her doctor about depression... very common in the elderly. Mum was 84 lbs. when she came to live with me... but, "Me? DEPRESSED? certainly not! I've never been depressed in my life!". yeah, RIGHT (she weighs 125-130 now). :)

    Bookmark   November 22, 2006 at 4:51PM
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I agree with all of the above. These are some folks who have been through it all! There are many causes of dementia, and, at times, the causes can coincide (ie: there can be more than one thing going on). The mental changes of many forms of dementia are quite unstable, so her behavior can fluctuate drastically. Of course, then there is the underlying personality that can still be there for a long while. So if she was fault-finding, sarcastic, etc, that will likely not change. She may still be able to cover it at times. New environments and people can trigger different behaviors. As Chelone points out, routines are very important for folks with dementia, and can spare you a lot of grief. Routines keep them feeling secure. I am sure that the move from her home was a "traumatic event" for one in her shape mentally.
Sounds like you are doing an excellent job. A doctor's eval could be very helpful. She needs a neurologist or a geriatric psychiatrist. If nothing else, having a baseline to start from (norm) will help them help you both better in the future. Some forms of dementia are correctible, otherws are progressively downhill.
Some signs of well-being are stable weight, or gain in her case, sleeping well at night, bathroom habits intact, mobility.
Good luck with all of this. It is complex and so hard on everyone. I am glad she has the "vacations" away, for your sake.
Keep in touch here...there is lots of experience and good folks to support you.

    Bookmark   December 1, 2006 at 9:44AM
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Mum's weight is stable and she'll eat pretty much anything; sometimes balks at salads, though! (and we "face her down"; giving her a "demi-demi salade" but insisting it be FINISHED. No excuses.).

She sleeps through the night with NO problem; on the 3 days I don't have to get her up she'll sleep for 12-14 hrs.! She never naps, ever. Never has, unless she is really SICK.

Her memory is disappearing daily. She never knows what day it is... but we make her "figure it out", prompting her with the pillbox and plenty of "hints". She is required to USE her mind.

Toiletting is not so straightforward for her, as she has an urostomy (pees into a bag). This means that she no longer feels the physical urge to urinate, so she has to REMEMBER to empty the urostomy pouch. She's pretty good about that, but isn't all that reliable about the two-step process required to close the tap securely... frequently forgets to turn the tap to the OFF position, although she remembers to put the "safety" end cap on. She is, for all intents and purposes "incontinent", as she can't be "counted on" to do it properly. Toiletting for BMs is FINE, though.

We have begun the process of finding LTC for her; complicated and wrenching... but it's time. It's been 3 1/2 yrs. for me and the necessary duties have increased markedly. I can no longer do anything that requires more than 3-4 hrs. outside the house. I'm awaiting the elder lawyer's scrutiny of the financial paperwork before submitting it... after that it will the time on the waiting list... and then telling her what will become of her.

I dread that!

    Bookmark   December 1, 2006 at 8:03PM
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Gosh Chelone! Has it been that long? I know you must be so tired of it all...with all the complexities. You all are amazing!
Good to "hear from you".

    Bookmark   December 4, 2006 at 6:26PM
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It's been that long, Derry! I can't believe it myself. And I AM sick of it. Really sick of it.

On 12/2 I was "on duty" at 4 AM, to clean up urine soaked bedding, etc.. Evidently, Mum had managed to yank the entire tap portion of her pouch OUT of the pouch itself. Everything was soaked and she was wandering around not knowing what to do. For the first time EVER, I screamed in frustration. I'm not proud of that. :( but I am human.

Today, I suggested she put on her coat, hat, gloves and go outdoors for some air and some exercise. She remembered the coat, but not the hat and the gloves... . Sometimes she forgets to take it all off when she comes in... . Mum is a "totally high maintenance babe" now. And she's going to outstrip my ability to care for her very soon.

It breaks my heart, but it's reality. I pray for a heart attack in the night... . Like so many others.

Hang in there, friends. You're not alone, many of us understand completely; nodding in agreement when you share your stories.

Make the best of every day for as long as you're able. :) And when you're no longer able, understand that sometimes circumstances outstrip our ability to provide care. (still struggling with that).

    Bookmark   December 5, 2006 at 5:22PM
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Remember this?....still very true!
"When it comes right down to it, you're in it alone. Each day is different, and you get up, put one foot in front of the other, and go - and love; just love."
Nancy Reagan's comments about caring for a loved one with Alzheimer's.

    Bookmark   December 12, 2006 at 4:26PM
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Oh please! like Nancy did the really gross stuff herself?! she was "alone"? I rather think NOT.

I appreciate the sentiment as much as anyone else, but it sure wasn't Nancy who was cleaning him up after a bout of incontinence. I wonder how many nights she had to "deal with it". And then get up and go to work.

It's been a very long week.

    Bookmark   December 13, 2006 at 3:42PM
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Hi Chelone and everybody,
You are right of course. Everyone has their own depth of involvement. I do remember how exhausting it is to be the hands-on person 24/7..and THEN go to work. And your Mom has such complex issues! And when you look down the road, you know in your heart that things will only get worse and more difficult many times.
For me, the isolation was one of the most difficult parts, because there was no family here to help me. I "hear" that feeling of isolation from Nancy, too. Although, I, too, am sure she had help. Just a bad situation all round.
I hope you will be starting a better week this morning...

    Bookmark   December 18, 2006 at 7:15AM
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I'm just reading through some old posts and came across this, so you may very well be past this issue right now. But I would insist that your mother have a brain MRI. I don't want to alarm you, but my mother began exhibiting strange behavior like this -- and she turned on a dime. It was like a light switch had been flicked off. Fortunately her doctor ordered a brain MRI early on and it was discovered that she had a tumor. Your mother's doctor should evaluate her for possible TIAs (mini-strokes), too.

    Bookmark   May 22, 2007 at 4:51PM
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