The stages of Alzheimer's

These are the stages of Alzheimer's as outlined on their web-site.

Mom seems to be a solid 5 with a few signs of 6. But the thing is, everyone is different.

 

Staging systems provide useful frames of reference for understanding how the disease may unfold and for making future plans. But it is important to note that not everyone will experience the same symptoms or progress at the same rate. People with Alzheimer’s live an average of 8 years after diagnosis, but may survive anywhere from 3 to 20 years.

The framework for this section is a system that outlines key symptoms characterizing seven stages ranging from unimpaired function to very severe cognitive decline. This framework is based on a system developed by Barry Reisberg, M.D., Clinical Director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center.

Within this framework, we have noted which stages correspond to the widely used concepts of mild, moderate, moderately severe and severe Alzheimer’s disease. We have also noted which stages fall within the more general divisions of early-stage, mid-stage and late-stage categories.

Stage 1:	No impairment (normal function)
	Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.

 

Stage 2:	Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease)
	Individuals may feel as if they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.

 

Stage 3:

Mild cognitive decline Early-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms

Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include: Word- or name-finding problems noticeable to family or close associates Decreased ability to remember names when introduced to new people Performance issues in social or work settings noticeable to family, friends or co-workers Reading a passage and retaining little material Losing or misplacing a valuable object Decline in ability to plan or organize

 

Stage 4:

Moderate cognitive decline (Mild or early-stage Alzheimer's disease)

At this stage, a careful medical interview detects clear-cut deficiencies in the following areas: Decreased knowledge of recent occasions or current events Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances Reduced memory of personal history The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations

 

Stage 5:

Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease)

Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may: Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated Become confused about where they are or about the date, day of the week or season Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s Need help choosing proper clothing for the season or the occasion Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children Usually require no assistance with eating or using the toilet

 

Stage 6:

Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may: Lose most awareness of recent experiences and events as well as of their surroundings Recollect their personal history imperfectly, although they generally recall their own name Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet Experience disruption of their normal sleep/waking cycle Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly) Have increasing episodes of urinary or fecal incontinence Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding Tend to wander and become lost

 

Stage 7:

Very severe cognitive decline (Severe or late-stage Alzheimer's disease)

This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered Individuals need help with eating and toileting and there is general incontinence of urine Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

Saying the "D" word

When we first realized Mom had a problem with remembering things, we knew that we had to address it and that it wouldn't be an easy thing to do.  I guess we knew her well enough to know that she wasn't going to take it well and none of us wanted to do it alone. So, when my older sister and I were both visitng that spring, we talked to my Dad, who was still alive then and he thought it was a good idea that we talked to her--without him.  It seems that all they did was argue at the time, because she was always forgetting things and he would get impatient with her so it came to be that when he mentioned her memory, it was an automatic 'sore spot' between them. He told us that if he said anything or was there, that she would automatically get defensive. So my two sisters and I told him we'd do it without him...and we let him off the hook.

The three of us sat her down and as I remember, our older sister did all the talking, at least at first. We did tell her how much we loved her and were concerned about her memory problems. We mentioned, very delicately if I remember, that maybe she had Alzheimer's...not mentioning dementia at all at the time.  I think this was 2002. 5 years ago. At the time we all lived so far a way from her. My younger sister only lived about a mile down the road, though, and Mom saw a lot of her. And the two of them were always very close. You know how Mother's are with their youngest... Anyway, Mom seemed to take the talk very well and she even hugged us and assured us that she knew we were just worried about her and that we wanted to help her.  At least that's what we thought.

I think it was later that same day when she was in the car with my younger sister, she let loose!  She had a complete meltdown in the car with sis telling us later that Mom claimed that we all thought she was crazy and she was loosing her mind and just to shoot her now!!  Put her away in an institution!!  it was all very ugly and I felt bad for my sister being the only one with her at the time. (Although, that's why Mom did it). I don't think she wanted to have that kind of meltdown in front of all of us...because from the way my sister told it, we might really HAVE shot her...

And during that same visit (I was staying at Mom and Dad's) She locked herself in the bathroom and I stood outside the door and listened. She was in there crying and sobbing and saying awful things about us thinking she'd lost her mind, and that maybe she had and basically the same stuff she had let loose on my sister, only she was locked in the bathroom, alone. I'd finally had enough and made her open the door. And this was back before I knew anything at all about this disease. I had no coping skills at all. So I told her if she kept ranting like that that, yes, we really all WOULD think she'd lost her mind. Probably not the best thing to say at the time. But it did calm her down a bit.

We took her to a doctor and the first diagnosis was that it was probably not Alzheimer's. It was probably memory loss due to depression.  She prescribed the Aricept along with zanex for the depression. But even the word 'depression' didn't set well with her so she wouldn't take the zanex. 

Dad died a couple of months after this episode.  It hit her pretty hard and I think she headed off in a downhill spiral the first year after he died. Soon after he died, we had her go to her family doc and get a physical. We wanted to get the smallest life insurance policy for her to cover her own funeral expenses when she died. This doctor performed the physical and a few weeks later she got a letter from the insurance company saying she was denied because he diagnosed her with Senile Dementia. OK--they weren't satisfied with only using the dreaded "D" word. Nope, they had to throw "Senile" in there, too, just in case we didn't understand demented. And to this day...5 years later, when she can't remember what she just said 10 seconds ago, if you mention that Doctor's name around her you will see the very definition of 'coniption fit'.  And it ain't a pretty definition.

We got her a great Doctor after that. One who specializes in AD. She's on all the right meds, at least we think she is, and she's holding her own living here part of the year and in Florida with my brother the other part of the year. But, as with a lot of AD patients, the "D" word and the "A" word are kept out of her earshot. One thing I never do, though, is change  the TV channel when the news shows a breakthrough in Alzheimer's research. Not only do I want to see it, but she'll watch it, too. She won't say anything, but she does get that look on her face that she gets when she's trying a little harder to concentrate.

Having said all of that, I'll now say this...We made the decision not to bring it up to her collectively. None of us wants to see her fit. And especially none of us who have her on a daily basis. And it scares her. And none of us want to scare her.  I think she knows she has it and at one time she even told my Aunt she had it, but we let her deal with it in her own way and meanwhile we feed her the meds that keep her mind strong for now. And we love her. And about every day she thanks me for "keeping" her. That's how she says it. And I remind her that she "kept" me for 22 years, so it's the least I could do.

I have gotten the feeling, though, that some members of the extended family feel like we are not doing her any favors by not talking to her about it. And what I've found out about this disease is, everyone handles it differently.  But I would be happy to drop her off with them for a week and let them talk to her all they want to about her condition. As long as they start the conversation on Monday and then when I pick her up on Sunday, they will have surely learned that her kids have made the right decision.

My message service

I was gone this morning for a while and when I got back, there were two phone calls. My friend, Aurora called to tell me she was on her way over, and the Alzheimer's Assc. called to remind me of a meeting tonight at the Methodist Hospital. Mom took both calls and when I got home, my message went something like this: "Aurora called to remind you there is a program at the Methodist Church tonight."

Eventually, I figured it all out. She did good. :)

My new friends

I've made a lot of friends in the past month. More friends than I've ever made in such a short time. And they are well-meaning, informative friends who want to help and who know only too well what I go through every day with Mom. They understand, they love, and most importantly they don't judge.  I have been visiting the Alzheimer's message boards and have learned more information in the past month about this disease and what's to come than I would have ever thought possible.  I guess what I mean is, I thought I knew what was coming and in a sense, I did. And I was scared to face a lot of it. But these people on the message boards put it in such perspective that nothing could come as a shock at this point.  No matter what kind of nutty thing Mom does, someone in the forum has been there, done that. And no matter how bad a situation is, someone in the forum has it worse.  In the past month, I've gotten the best advice I could ever ask for. And it didn't come from a Doctor, but from people who KNOW. Experience is the best teacher.

One friend I have on the boards goes by the name 'Serenity'.  Serenity is at the end of her journey with her Mother. But she was gracious enough to let us all share the final days her Mother spent on this earth. It had to be the most beautiful passing I have ever had the opportunity to 'share', even if all I did was read her posts daily.  My wish is for Mom to pass that peacefully, when it's her time to go. (And we have a long way to go before that happens.) This was her final post (you can click on it) about her Mother, who died yesterday at 3:00pm   Dear Mom - Your Angel Wings look so so beautiful on you...see you again in my dreams. - Topic Powered by eve community

The Pedicure

I'm finding out slowly that having a loved one with Alzheimer's is like raising a child in reverse. Gradually they forget to take care of the simplest things...

I gave Mom a pedicure the other day and I still don't think I'm over it, although my husband has let me touch him again, with the same hands...If you knew me very well, you'd know that a pedicure would normally be something completely out of my realm. And here I found myself giving my Mother one. But....I got some new products recently that I really love and I wanted to really put them to the test. Mom's feet and legs get so dry. I had her soak her feet for a good while and then rubbed her feet and legs down with a dead sea salt scrub and a few of the other products...then clipped her toe nails. That had to be the worst. I don't know when she'd done it last, but it now dawned on me why she clicked when she walked across the floor. I think she went down half a shoe size when I was done.

If someone told me a year ago I would be clipping her toenails, I think I would have said I'd rather pull out my hair........one strand at a time.........slowly. But I was doing it and I even found it relatively painless. Although she didn't share the same feeling when I nipped her toe. (ouch!) Other than that, she loved the whole thing. And the stuff really helped her dry legs. And I guess its a good thing I found it relatively painless, because it'll probably be a regular job from now on.

Keeping busy

One of the challenges I face daily is keeping Mom busy enough. I worry that she does too little some days. She'll read the paper all morning and work on the crossword. She used to do all of the puzzles on the page and the Cryptoquip used to be her favorite, I think. But now she just struggles with the crossword and she still does pretty good on the word search.

Now, with the Virginia Tech massacre all over the paper, it's hard to let her sit there and read it over and over. It just upsets her so. I thought baking cookies might be a good diversion, so she helped me. I was looking for things for her to do on the Alzheimer's message boards the other day and, sure enough, someone had printed a long list. They are always good for ideas, prayers, suggestions and a plethera of useful information. And it's all coming from people who have been through it or are going through it now. Anyway, the list had baking cookies on it and Mom hasn't done anything like that in years, probably.  I'm baking something all of the time but I usually just do it while she sits in the kitchen and works on her puzzle. Today I had her grease the baking sheet and mix the ingredients. Then she dropped them out on the sheet. All sounds so smooth and easy, doesn't it?

It was one of the hardest things I've had to do in my own kitchen!  AAAHHH!! It was excruciatingly painful to not jump in and do it for her. But I was good and I made myself be patient and let her do it. She needs to feel that sense of accomplishment, I think.

After that we took a walk. I can get her to take a walk with me but rarely can I get her to make it all the way around the block. She'll start breathing heavy and then she starts moaning and groaning...lol. And telling me how she's 78 years old and she can't walk like that anymore. (Keep in mind, we're moving at a snail's pace but if I take her out shopping, she'll walk all afternoon!) Anyway, we got out there and I thought I would point out all of the new flowers coming up with the spring weather and keep her mind off of the walk itself. She pointed out some spirea in bloom and we talked about how beautiful everyone's tulips were. It was a nice walk but when we got to the alley she still wanted to take the shortcut down it and back home.  My goal is to get her all the way around the block!  When we got back to the house she told me we needed to get a bud vase out and cut some of my tulips. I got the vase ready and she cut the flowers.

She helped me get dinner ready, too. She's still the best potato peeler in the house. All in all, it was a good day for her and I.

A baby blanket has begun

Today I asked Mom if she thought she could still crochet a small square. She hasn't done anything more than a dish towel end for years. Shr tried and came up with a pretty good one so now she is working on a baby blanket for my nephew's baby. I hope she's able to finish it. I'll have to keep after her about it. She's excited about being a Great Grandmother, but only when I remind her...I'm hoping the blanket will help, too.