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Old 01-07-2006, 02:30 PM   #1
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Your experience.. time frame from early symptoms to later stages

I'd appreciate hearing your experiences on the rate of progression of this disease. Can you give me an idea of how much time passed between the point of first noticing symptoms (forgetfulness, difficulty finding words, etc.) to the point when your loved one wasn't safe being alone? To the point of not recognizing family? Or to the point of needing help with daily tasks like bathing? Any time-line/chronology info. you are willing to share would be appreciated.

 
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Old 01-07-2006, 02:31 PM   #2
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Re: Your experience.. time frame from early symptoms to later stages

P.S. Would you include info. on age when symptoms first began? I'm wondering about the difference in rate of progression for early onset vs. otherwise.

 
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Old 01-07-2006, 04:14 PM   #3
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Re: Your experience.. time frame from early symptoms to later stages

Looking back and knowing now what I know about the signs and symptoms, I would have to say that my dad started his decline about a year after my mom died in September of 1993. He was with my mom from 1960 till her death-33 years. I thought the way he was acting was due to his grief and the fact that he was alone most of the time. He never liked being alone at all before. Around that time in 1994 was when my sister R moved 700 miles away. She and my dad were always very close. This didn't help matters any. Dad began drinking heavily at times.

Dad spent a couple of years going to south to my sister's house and coming home every month to pay his bills. Why he did that, we never understood but that was his choice and he was still of sound mind to decide. He was driving these 700 mile trips alone. He met a woman who was from an area near where my mom was born and raised. And she LOOKED like my mom! That's when dad went into his youthful days and acted like a crazy teenager. That is until Merbaleen (Merb) (yes, that was her southern name! ) broke up with him. This was all until 1996 or 97.

My older sister S moved in with dad in 1995 because he was still acting not himself. We thought that if someone moved in with him and helped him, he would snap out of it. Not so. He began to develop bedsores because he wouldn't get out of bed. Much of this was depression but around this time, I remember him saying "I'm going to wind up just like my dad". His dad died of alzheimer's and heart disease in 1990 at the age of 86. Grandpa was in the final stages.

We were seeing dad's memory decline very slowly. It started in about 1995. By 1997, he started having a hard time balancing the checkbook and paying his bills. He could still drive very well and was still driving long trips south. But these trips were fewer and fewer until my sister R and I convinced him that we would rather drive him ourselves to keep him company.

In 1999, my sister S moved 800 miles away.

Dad's declined seemed to slow down for a while. He was still able to live alone with my assistance. I lived about 10 miles away from him and his house was in between my house and my job. So depending on what shift I was working (I rotated every week), I would either stop in before work or after work a few times a week. He was keeping the house fairly clean but I would have to go through the fridge for the spoiled food and such and give him gentle reminders to shower. The house was needing work done to it like a new roof and repairs to an outside wall and door for the garage. He thought that just "spackling" would fix it. NOT! the hole was about 12 inches around and it was a wooden outside wall!

Dad was still going back and forth to my sister R's house.

By the time we moved in with him in April of 2004, he could no longer live alone. He was getting sick from the food he was eating and how he was preparing it. He would use the same dishes over and over again with cleaning them. He thought rinsing was enough. He never cleaned anything he cooked in claiming that it would ruin it if it was cleaned.

Now he's making up stories in his head of things that he thought happened. He's no longer able to safely drive and cannot remember much of anything at all. He's also quickly losing his memories of childhood and is still trying to mask that he doesn't remember his sibling's by name. He still remembers his kids and grandkids.

I haven't seen dad in 7 months now so I really can't say what he's like today. I'm sure he's not as well as he was then.

Love, Barb



Sorry. Forgot to tell you that dad was about 68 when this started.
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Old 01-07-2006, 05:19 PM   #4
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Re: Your experience.. time frame from early symptoms to later stages

Hi -

I'd guess my widowed mother was about 83 when she had the 1st of 3 car accidents in 18 months. I thought it was because she had cataracts and was driving on a rainy night that first time. She stopped driving at night, especially in the rain, on my request. She didn't tell me about the 2nd and 3rd accidents - but my cousin did tell me! During this time her house became cluttered.

She was 85 when she forgot a 1 is needed before a long distance call, forgot what mail is important and what is junk (I hired an accountant to help), how to use her washer and dryer and make coffee, I told her I needed to see "the books" (she told me she used to keep very good records and I told her I was pround of her), and I arranged with the American Airlines Special Assistance dept to help her get to our TX town from her Richmond home (cousin put her on the plane) for Christmas. At our home she opened the same gift bag 3 x as I've said before. She entered Assisted Living just before her 86th birthday and didn't remember how many children she had. Needed a walker, antidepressant because of crying when she said she wasn't sad, and sleeping pill so she'd sleep at night. Was on Arecept, lots of diarrhea. She worried that her mother didn't know where she was but knew she was the only one left in her family when told of her sister's death. "Daddy, Mama, Frank, Connie, me and now there's just me."

3 months later she entered a locked unit (wandered out of the ALF at 9pm), didn't recognize her church, and thought she was on a cruise. Didn't know I was her daughter and started falling over backwards.

By January '03 she was in a wheelchair because she'd forgotten how to walk and out of the locked unit because she couldn't escape. She was 87 in Feb. All through that year and most of the next, she became more childlike and talked less because she couldn't express herself - she'd get lost after a word or two. She still ate well though she needed to be helped sometimes, fed sometimes, and occasionally reached for her neighbor's dessert.

During the summer of '04 she lost weight and became more rigid. She still ate well but lost the weight anyway. She didn't start a conversation, but could always say, "Thank you". "That feels nice", and "I love you, too". She died in early September '04 at the age of 88 years 6 months and 5 days. The most debilitating part of her disease was mercifully brief.

Hope this helps. Wishing you well - Barbara

 
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Old 01-07-2006, 05:36 PM   #5
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Re: Your experience.. time frame from early symptoms to later stages

I'm really interested in this question too -- I hope you get lots of answers! I pushed and pushed the doctors for a prognosis when my husband was diagnosed, since I wanted to know how much time we had.

Looking back once he was diagnosed, I would say that the year before he went to the doctor for a checkup he was beginning to show symptoms, including becoming disorganized and having speech problems. The speech problems were what drove him to see the doctor, since he was losing words too frequently and thought something wasn't right.

The doctors really didn't want to give me a prognosis since they said everyone was different, but finally said that they thought my husband (59 at the time of diagnosis) wouldn't know who we were in 4 years, and that the average patient lives 8-10 years from diagnosis. We're now going into the third year following his diagnosis. He is still able to be alone although we moniter the situation carefully. He still knows us by name (although sometimes he uses nicknames for the kids since he struggles with their names and speech -- but the nicknames are appropriate and shows he knows who they are). He is declining slowly and steadily. We saw quicker declines when his routine was disrupted by a vacation or when he is under stress. He can't remember things for more than a few minutes now (for ex., if you ask him to get something from another room he will go to that room and then ask what you wanted him to do there). He does better with things that he has done for years. He can operate the snow blower, for ex., but he can't explain to our kids how to work it. He needed to look up the telephone number of the company that he worked for for 17 years.

Last edited by Beginning; 01-07-2006 at 05:43 PM.

 
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Old 01-07-2006, 06:05 PM   #6
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Re: Your experience.. time frame from early symptoms to later stages

Grandmother was 92 when her memory started to go, this was in '88, she lived in her apartment with daily visits until she was 94. Moved into a home then and died in '95 at 101. Mother started in '94 with memory problems, she was 73. Lived at home with live in help until '99, died in 2000 at 77.

 
Old 01-07-2006, 09:10 PM   #7
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Re: Your experience.. time frame from early symptoms to later stages

My grandfather started noticing the billing errors and other things about my grandmother as strange back about six years ago, she was very good about covering up her mistakes and the rest of the family didn't believe him, but within a year the family had to agree and start admitting that something was off and she'd get very defensive about any mention of a problem. Another two years later we noticed how much weight she was losing and notes around the house with family members names and birthdates on them. Not long after my father had to start making her meals and leaving notes around the house (press the button for coffee, get the milk from the fridge, don't touch ____). My grandmother was still driving until two years ago, the thought of it now is very scary as she really shouldn't have been. Her doctor made her have a drivers test and while she could drive the car, she didn't understand what she should be doing in the test or the signs on the road. Within the last two years, she has gone down hill drastically in all her skills. At this point it is a constant job taking care of her, she tries going to bed all day long, she puts things in the oven and leaves them, we have to dress and undress her if she's going out or going to sleep because most of the time what she's wearing just isn't right, she can't do anything like watch TV, or hold am understandable conversation, we need to get the tooth paste on her tooth brush, she doesn't really know we're related over half the time and sometimes says she wants to go home when she's in the same house she's lived in for closer to 50 years... the list goes on. At least she can still use a phone, my dad recently bought a phone with a huge number pad on it so she won't make mistakes. From the start until this stage, it's been around six years since someone has noticed signs.

I'm very interested in other people and their replies.

Sorry, forgot to add her age, currently she is 84. Her younger brother is at a similar stage, but is only in his seventies. Her mother also had dementia. Sort of scares me...

Last edited by Kelen; 01-07-2006 at 09:21 PM.

 
Old 01-08-2006, 07:21 AM   #8
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Re: Your experience.. time frame from early symptoms to later stages

My FIL, who will be 84 next week, was diagnosed with dementia about three years ago. He had been living on his own and dating for two years after his wife died in 2000, but little things started happening. We own a restaurant and he would call us up at 6 a.m. on Sundays and ask why we weren't open. We hadn't opened for breakfast on Sundays for 10 years and he was unclear on the day of the week. He bought a $10,000 CD and didn't realize he did not have the money in his checking account to cover it. We had to write him a check to cover it until he could get it out of another account. He didn't know what money to give to pay for a meal. He started telling the same story over and over each time you saw him. He couldn't put together a television shelf and he could not operate his television control.

He was only able to survive on his own because his girlfriend lived across the street, but he started calling her at all times of the day and night. He had a couple of fender benders and could not remember how to drive to places in our small town. He had a heart attack in his mid-60's so we think he had suffered small strokes in later years. When some of his mental problems started he underwent a procedure to clear the arteries to his neck. We had been told at the time of his heart attack that they were getting clogged, but there was no procedure to clear them at that time. After that was done he actually seemed to decline faster so we wonder if he had a stoke at that time.

When his girlfriend said she not cope with him anymore (about a year ago) we decided to place him in a nursing home down the street from his old house. He was fine for a while, but then started walking away from the facility. This led to his placement a few months ago in a locked down facility. He has adjusted, but he is taking three anti-depressants that cost $600 monthly. The facility cost is about $3,150 per month so he is rapidly depleting his assets. His medication is being upped as he shows more violence on occasion. He is starting to forget the names of his grandchildren, but still remembers my husband and the girlfriend. When you talk with him he usual repeats back what you say. You say, "You have a birthday coming up" and he says back, "Yes, I have a birthday coming up."

We were fortunate that he gave my husband power of attorney, but it has been a mess because he had reached a point that he had no idea where he had money invested and we had to sift through all of his financial records over the years. We were fortunate that his girlfriend recognized the problems and urged him to turn everything over to my husband. Prior to that he refused to discuss his financial situation with my husband or his sisters.

I think what I find so surprising is his refusal to acknowledge he was married for more than 55 years to my husband's mother. There are no pictures of her anywhere and he never mentions her at all. My husband says it was not a happy marriage, but I still find it odd since she was such a part of his life for so many years. He still dotes on his friend and she has been wonderful, but I can't get over that.

Jane

 
Old 01-08-2006, 08:13 AM   #9
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Re: Your experience.. time frame from early symptoms to later stages

Jane,

This is off the subject, but my mother also took down pictures of my father when her Alzheimer's was about midstage. She said the man in the pictures was too old to be Shep. When she referred to my father, she would say "Him" with emphasis, but confusion as to who "he" was (Dad died almost 20 years before the AD started). Mom mentally "youthened" and became in her mind too young to have a daughter my age, and then to have a daughter at all. She completely forgot Dad and me, though she was always glad to see me. My parents were married for almost 40 years. Go figure!

Perhaps your father has forgotten your mother, too, so her pictures no longer made any sense to him.

Wishing you well! Barbara

 
Old 01-08-2006, 11:24 AM   #10
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Re: Your experience.. time frame from early symptoms to later stages

My mother started forgetting realtively important things about 9 or 10 years ago. She forgot I was coming for a visit, and did not push the buzzer to let me in. Neighbors buzzed me into the building, and then I banged on her apartment door.

Now I realize how her defenses worked: when 'caught' in a situation that showed how forgetful she was, she made something up. That evening she told me, 'I thought you were not coming because your plane was so late." When I said it was not late at all but right on time, she then said "kids were ringing all the doorbells all evening and I thought it was them again." Later she told my brother, "I fell asleep and did not hear the doorbell."

At the time I was happy to finally be inside the apartment! I had to make up my own guest bed for the frist time, and it was obvious she had not cleaned up the apartment for awhile, very unlike her usual "comapany conditions."

Yet I went back home in a couple of weeks without a thought, except, well, she is 87 years old! While there I had a set of door keys made for myself. On the next few trips I let myself in.

I stayed with her again in late 1999 after she fell and hurt both knees. The stories about how it appened were also contradictory: the story changed. At one point I thought she had fallen 3 times. Once she was down on the street in the pouring rain until a taxi stopped and took her home. Another time she got up, walked into the senior center and they put ice on her knee. The third version had a visiting nurse come to the house and examine it while speaking to the doctor on the phone to determine it was not broken.

Now I am sure only ONE of those things happened, not all 3. But she told them all with a straight face and many embellishments and enjoyment ... Mom loved an audience and loved to be the center of attention.

I moved to her apartmentin late March of 2000, and continued to blame old age and normal everyday forgetfulness ... until about 2003, when gross errors were being made, things lost or thrown out, even old memories lost, and she began not finding her way home.

So in my opinion it has taken about 10 years for her to reach the stage she is in now. AD in stage 6 is my opinion.

It was not a hassle or burden until about May 04. That was when I began negotioting with my siblings to get her some help .. that took until October 04...

I think it goes slowly most of the time, unless a tumor or bleeding in the brain is causing it (that's what they rule out with MRI and CT scans) ...

Slowly enough for you to adjust to the changes, slowly enough to make other arrangements ... but still it is sad at any age to lose the wonderful Mom you had and now have a vacant stare.

Love,

Martha

 
Old 01-10-2006, 12:44 PM   #11
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Re: Your experience.. time frame from early symptoms to later stages

About 7 years ago, My FIL was a 79 y/o who still went to the horse races, drove, etc. Then one day, seemingly out of the blue, after he went to AAA to get info about going to the races, etc. he laid the papers he had just gotten from AAA on the table, he then sat down and looked at them and said "where did those come from and what are they" He was in this twilight zone (we call them "spells") for about an hour or two. Then he came back around. I did give him an aspirin, as I was thinking he might be having a mini-stroke. We didn't take him in at that time. We did make an appointment with his Doctor and they did a c-scan. The Doctor just said it was "aging brain" whatever that meant. We went along okay for awhile. Then he started getting lost while driving over to our place. He kept having the "spells" at times and I would always give him an aspirin, take his blood pressure ( which was always low during a spell) and give him a cup of coffee. A few years ago he was having a bad spell where he didn't know where he lived, etc. That's when we decided it was time to take his car and sell it. We finally convinced him it was for the best. We got him moved into a senior apt. complex where he can eat lunch, get his laundry done and have his apt. cleaned once a week. It's also very reasonably priced. It's a Methodist Village next door to the Methodist Nursing Home. We're lucky to have found it for him. He is 86 now. He still has the "spells" . I did take him in for a complete physical a few years back and had him referred to a Neuroligist. They did an MRI and the finding was "mini strokes". His memory now is shot. He can't make new memories and he doesn't remember things that happened a few days ago. He still remembers things that happened years and years ago. When he has the "spells" (and I guess they are mini strokes) he just blanks out completely and doesn't know anything, this can go on for hours. Once we did take him to the ER when it lasted longer than usual and they said it was a mini stroke and we took him home. He is taking Plavix and that is all. We have never had a diagnosis of AD, but I suspect that. Has anyone else had experience with these "spells" ? It's like he is walking around in a fog and doesn't remember how to do anything and sometimes says bizaare things. Then he comes back around and just says he felt funny for awhile, but doesn't have a clue as to what just happened. It's such a wierd thing to watch. Some days all he wants to do is sleep and I suspect he is having one then. Thanks, Cindy

 
Old 01-10-2006, 01:51 PM   #12
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Re: Your experience.. time frame from early symptoms to later stages

My Mom had those 'spells' too. She used to be a volunteer once a month at La Guardia Airport. The bus would come to the Senior Center very early, about 7 AM and drive the ladies to the airport for a 4 hour shift.

One of those volunteer days I got back from school at 3, expecting Mom to have been home since 12:30. She was not there. I assumed she did a double shift, which happened if someone didn't show up. I expected her at 4:30. She did not come home.

I got panicky and called the center. Did my Mom go to the airport? Well, she was here early this morning but when the time came for the airport bus to leave, she didn't go. So she is still there? No, she went away right after that.

FEAR ..worry...where can she be?

Finally after alerting my brother and praying really hard - Mom arrived. Where have you been? They said you didn't go to the airport? Mom began a rambling confused story about where she was all day (now about 9 hours since the moment she left the center!!).. went in a taxi, got out, walked here or there, ate lunch here or there, every time the story differed. We never found out where she had been.

That was the day I told my sister and brother that if we don't get a home health aide for her I would single handedly take her to the nearest nursing home all by myself, if it costs me my last penny. They agreed, had her assessed, and she was never allowed to go out alone again - only with me, with Bill, or with an Aide. She hated it, felt unfree. BUT - where had she been? How did she finally get home? What all could have happened to her out there in the big city alone and totally confused????

I went from being concerned, to being scared, to being panicky.

AD is horrific.

Love,

Martha

Last edited by Martha H; 01-10-2006 at 01:54 PM.

 
Old 01-10-2006, 04:09 PM   #13
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Re: Your experience.. time frame from early symptoms to later stages

I appreciate all of the info. shared. Thanks for taking the time and sharing your experience.

 
Old 01-10-2006, 07:18 PM   #14
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Re: Your experience.. time frame from early symptoms to later stages

My husband as vascular dementia at 56 yrs old (diagnosed 7 mos. ago). When I look back (about 1 yr earlier) I can see where he was having problems doing the tasks he had done well before the mini strokes. He would take forever to do the simplest things. He would confuse people trying to tell them what he was doing or trying to accomplish. I would get frustrated but thought it was age creeping up and him being stuborn. Now I realize he probably forgot how to do them and couldn't put his thoughts together to complete a sentence. He was always good at finding places. We could be in a strange town and he would always find his way back and this was starting to change. One day he became so confused. Mixed up all his medications, couldn't remember where his sister lived (had been there over 100 times for the last 20 years), kept thinking everybody was changing things on him. Repeated himself over and over and stayed awake all night, Had hallucinations and illusions. Got very agitated and angry which was not his normal behavior. He was hospitalized three times and they finally diagnosed him after CT & MRI showed several mini strokes and one large one. After they tried a couple different medications, they finally found a couple that seemed to help, (Reminyl & Arizapole). He now is pretty compliant. At times he seems quite normal and then he goes into what we call "the zone". Very little verbal communication, no concentration or ability to handle the simplest tasks, can't drive, still gets confused sometimes about which way to go, has to be directed in anything he does, has no interest in TV, radio, or reading. It is frustrating because people will think he looks ok, but you don't see it until you are around him for awhile. Then they say, oh I see what you mean. The doctor's have told me to be prepared that it could get worse and have a plan in place. Also it is common to have AD along with vascular dementia. They cannot give any kind of time frame. I have got POA's and am planning ahead. Glad we are sharing experiences, sometimes it just helps to read someone elses story.
Diane[/SIZE]

 
Old 01-11-2006, 04:32 AM   #15
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Re: Your experience.. time frame from early symptoms to later stages

Victorino -- I know exactly what you mean, when you say your husband looks the same. My 61-yr old husband looks the same as always too. Even though I know better, sometimes I still ask him to do something that I know is beyond his abilities since he looks "normal." Some people still think he's fine even though all he's doing is nodding and smiling when they talk to him -- they don't figure out that he's not exactly carrying 1/2 of the conversation! One of my kids recently got a speeding ticket with Dad sitting in the front seat (I wondered if the police officer thought that Dad was really permissive .)

 
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