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11/02/2009 02:38 PM

Experiences of how quickly Alzheimer's progressed

atthebeach
Posts: 11
New Member

I would like to hear from other adult children or caregivers how quickly Alzheimer's progressed and their experiences with their parent or relative that has AD. My mom was diagnosed a few weeks ago but hasn't told anyone yet. Including myself. Does it take months or could it be a couple of years before she really starts to decline. I guess she's been told she is in the early stages. Now she has problems remembering things but is still driving, etc.
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11/02/2009 05:07 PM
DearHildie
Posts: 23
New Member

Hi ATB!

Mom moved in with me this past June. She was diagnosed with Alzheimer's in August. I don't think she's in the early stages though. She had a neuro-psych evaluation done in the spring because I was so frustrated with her behavior and couldn't do anything about it because she still had total autonomy. The doctors that performed the neuro-psych evaluation told me she was in the throes of Alzheimer's.

I noticed forgetful and frustrating behavior more than 10 years ago. Mom was still driving 3 years ago. I remember she'd go out in the morning for a few items and it would take her all day before she returned home. I'm sure she was getting lost. She stopped driving in the evenings. I think the darkness of evening driving really confused her.

I'm so glad that mom's living with me now because I'm sure she wasn't eating properly. She couldn't take care of herself. My weekly visits became harder and harder because there was increasingly more work.

Since mom has been here, I think her illness has progressed some. She's having tactile hallucinations very early in the morning, sleeps a great deal, forgets easily and lately has been having nightmares that seem so real to her that she's surprised to be home in her bed when she wakes up.

Mom still takes care of her own hygiene and keeps herself busy with her "life story". Once I've finished staining my new windows and door walls and have gotten all of mom's things into our house and organized, I plan on getting her out more. I think that'll do her good.

Good luck with your mom. Kindness, understanding and distraction works so much better than showing your frustration. (Although we're all human and I've lost control every once in a while. I'm getting better at handling the situations, though.)

Be there for your dad, though. He's going to need help.

Perhaps you can introduce him to this support group. For me, it's been so helpful to be able to vent and to read other people's stories. There's much information and understanding to be gleaned here.

Take care ATB!!

Linda


11/02/2009 06:14 PM
atthebeach
Posts: 11
New Member

Thanks so much for sharing your story. It helps to hear what others are going through. My dad doesn't do computers so I know he won't be joining the group. They actually haven't told anyone yet. Except my dad told my mom's sister. And my aunt told me with a little prodding. I think something has been going on with my mom for a while. I've traveled with her and it's very frustrating. I've read up on Alzheimer's in the last couple of weeks and learned you're not supposed to try and reason with them. That was great information. Because I do try to reason with her and I usually end up wanting to pull my hair out.

I am worried about my dad. I'm afraid he won't ask for help when he needs it. Once they formally tell me I will offer any help I can.

Thanks again for posting.


11/02/2009 07:15 PM
DearHildie
Posts: 23
New Member

Hi again ATB!

A piece of advice given me by my mother's doctor is that the Alzheimer's patient "is always right". I'm getting better at adhering to that rule. It still is a challenge depending on the subject or situation. I also need to work on becoming creative with distractions.

As far as waiting for your Dad to ask you for help, you might need to step up to the plate a bit sooner. The disease is wily and often the AD patient seems perfectly normal. This can go on for years and your Dad is living with these circumstances all by himself. Perhaps you'll be able to find a way to gently tell him you know there's something wrong with her and describe what situations make you suspect her having Alzheimer's. Let him know it's a disease like cancer or heart disease. It's just that her brain is affected. (FYI, mom tells me all the time she doesn't have Alzheimer's. I think that's typical for an AD patient.)

I'm praying for you, ATB. I'm praying for myself too.

Linda


11/02/2009 10:48 PM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

ATB, Alzheimers is very individual. It varies from one to another but a general indicator would be 8+ years. One friend on the 'net has it for 14 years and she chats with us every night so it can last a long time. My friend's mother had it for 20+ years. But some forms of it can be very short. Again, each person is very different and the best bet is to look at the stages and you will have a rough idea what stage she is in and in a vague sense follow the progress of it. If you go to:

http://www.mdjunction.com/forums/alzheimers-disease- discussions/alzheimers-resources

you will find various resources including the stages but be aware that the stages are not mathematical. She could be in stage 5 in the morning and 4 or even 3 later in the day. But it gradually moves up through the stages with that kind of up and down movement. From my own experience I think it is better not to anticipate too much - once again emphasising that each person is so different.

Hope some of this helps.

Tony


11/03/2009 08:34 AM
alznotwell
Posts: 1145
Group Leader

Hi ATB. It's normal to want to know what is going to happen so we can prepare ourselves for it. That is hard with Alzheimer's because it is such an up and down, back and forth disease. How long does it take? My aunt developed AD in her 50's and lived into her mid-70's. Her younger sister didn't show signs until her 70's and she lived into mid-80's. My mom was 82 when my stepfather died and she plunged into AD rather suddenly, but is now 90. My husband's uncle developed AD, rapidly deteriorated and died in less than a year. So you can see how unpredictable the course of the disease can be.

Although there are some loose classifications which indicate behavior or events at certain stages, this is only a very general guideline. My mom could get up in the morning and decide she would mow the lawn (90 years old). A few times she actually could. More often she didn't have the physical strength to do it. Gradually she couldn't remember what it was she needed to mow the lawn with, nor remember how to do it when I showed her the lawn mower. From relative clarity in the morning, by afternoon she could not recognize me and was somewhat afraid because a stranger was living in her house with her. One time when my brother stayed with her to give me a break, she worried that there would be a scandal because she was living alone with a man in the house!

In some ways ATB, it is better not to anticipate because the things you worry about may not happen for years or may not happen at all. That worry leaves you with less energy for dealing with the problems that do present themselves. Just learn to be very flexible and deal with the problem in front of you as best you can.

The one thing you can pretty much count on is that the disease is not going to permanently reverse itself. We do not have the drugs for a cure yet, although there are drugs which can help with symptoms. Your father must be elderly also and he may not always be able to care for your mom. I would be checking on available facilities should she require more care than your father can give. Trying to find a facility on an emergency basis can be a nightmare, but if you educate yourself now you will know what is available should you need it in the future. Other than that and dealing with day-to-day problems just try to have as many normal activities with your parents as possible. There is still time to store up many good memories. ANW


11/03/2009 08:36 AM
DearHildie
Posts: 23
New Member

Hi Tony36.

Your "stages" post is so helpful. It helps to have an idea of where the AD patient is. Yes I can see the different stages mom is in. It was heartbreaking to read, though.

How do you figure out the diapering thing? Mom lives with us. I plan on having her stay until the end. Right now she's still able to take care of herself. Her disease hovers around stages 3 and 5. I think she's mostly a 4.

I also think mom has been battling the disease for longer than 10 years.

Do most patients make it to the end?

Thanks, Tony for posting the stages and all of your kind words of understanding and encouragement.

Linda


11/03/2009 08:43 AM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Hi Linda, As vague as the stages are i think you have grasped the main concept where they move in and out of stages. Sometimes the patient is lucky enough to be taken by a totally different disease as happened in Brid's case; her lungs gave out as she was drifting in to stage 6 not knowing me at times, losing words and getting confused. But I was ever so lucky as she was in very good form for the final two months and enjoyed going out every day.

Tony


11/06/2009 10:57 AM
Shibumi09
 
Posts: 2
New Member

Hello! I am a brand new member.

I lost my mother to Alzheimer's last week. She was never diagnosed as having Alzheimer's in her lifetime. The doctors always referred to it as dementia, but never would go so far as to define the exact type of dementia she suffered from. I learned she had Alzheimer's when I received the death certificate.

My mother started to have difficulties around 2003, when she was 78 years old. I chalked it up to her being "flaky." Then I noticed she started having problems driving, getting lost, managing money, buying things uncontrollably, failing to pay her income or property taxes, etc. She tried as hard as she could to hide the problems she was having, as she wanted to remain independent as long as possible.

At my urging (forcing?), in 2004, she went to a doctor for an evaluation and was officially diagnosed as having dementia. I lived in another country at the time. I'd visit her every 3 months or so. I got all the legal paperwork lined up before it was too late (I cannot stress the importance of this enough!!!!). I noticed things were getting worse and worse. I rescued her financially, but could not take control of matters until the doctors declared her incapable of managing her affairs. The doctors finally did so in 2005 after I flew half-way across the world to visit my mother and was locked out of the house. I had called her a few hours before I arrived to remind her I was coming. When the locksmith drilled the lock off the door, I discovered her in a terrible state. This was the end of her independence. My husband immediately flew out and helped me find a care facility for her.

We found a fabulous place--a private pay board and care that specialized in dementia patients. There were only 6 patients and 2 caregivers around the clock. They promised me they'd take care of my mother until she passed--unless she became violent or a threat to other patients. They were like family. Truly angels sent from above. They cared for my mother until she passed last week at the age of 84, 4-1/2 years after being admitted.

So, in my mother's case it was 6-1/2 years from the first signs, 5-1/2 years from official diagnosis, and 4-1/2 years from being declared incapable of caring for herself before she passed.

I hope that my sharing sheds some light on this cruel disease. Be strong. ((((hugs))))


11/06/2009 11:20 AM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Hello, Shi, and welcome to our group. Thank you for sharing. so sorry you had to go through this tragic journey.

Tony

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