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.

Is there anything I can do?

Mom is forever asking me, "is there anything I can do?" Bless her heart, she spent her best years raising 6 kids and was always busy.  I have a hard time answering this question a dozen times a day. And, in my mind the question has morphed and carries a whole new meaning for me. I feel like she's asking, "is there anything I am ABLE to do?" And it's starting to break my heart when she asks the question. Because, the reality is, there isn't much anymore that she can do. So, the things she does do around her are held in high regard and I always tell her how appreciative we are when she helps with dishes or folding clothes, etc. One of the things she does that I just LOVE is she makes the coffee in the morning. She has always been an early riser and so have I but she still manages to wake up about an hour before I do. She's up around 5:30 and I get up with Stan at 6:30. It's great having a good hot cup of coffee waiting.

The other night I was getting dinner ready and she asked, "is there anything I can do?"

So I said, "sure, Mom. Why don't you set the table." And she began getting out the plates. She set three of them on the table and got the silverware out. Then I told her just to start handing me the plates, one by one, and I would fill them from the stove. She gave me the first one and I put a serving on it and she set it back on the table and handed me the second plate, which I filled. When she turned around to set the second plate down she said, "well, someone already got theirs. There's one here already."  :)

Last night after we finished the dinner dishes I thanked Mom for helping with the washing and she said, "well, it's nothing. I feel like I have to earn my keep around here. You all feed me and keep me." She says this every time I thank her for helping. So Stan said, "the grass needs cut and the gutters need cleaned out, too, Shirlee."  No one laughed harder than Mom. She LOVES Stan. And he jokes with her all the time like that.

Mom's Courage Cup

Before my Mom moved out of her house, she was sitting at her dining room table one morning, talking to my sister. My sister was the only one who lived close and she or her husband tried to get out there every day. It was fairly early in the disease, but it was also in the first year after Dad died.  Mom started telling her she was worried about her memory loss and she started to cry and tell her how scared she was all of the time. I went to visit her one weekend and the visit went just fine. When I got ready to go, I had my stuff packed in the car and was headed out the door and she asked me if I really had to go. I told her I did and that I had to get back to work. She started crying and told me how lonely she was out there every day. That was the hardest drive I ever had to make. I cried the four and a half hours back home.  Of all of the nasty things this disease was doing to her, scaring her was the worst for me. Especially, since she was alone. That was the hardest for me to deal with. 

 

Last month Mom found a coffee cup she liked in a catalogue and asked me to send for it for her. It says “Courage” on it.  She loves it and keeps saying how much she would like to have a whole set. I have a ton of coffee cups and that cup is always there for her. She uses it for her coffee every day. I tell her that and ask why she needs a whole set.

“So I can take them home with me.”

“You are home, Mom,” I said. 

She was showing this cup to my sister when she came to visit last week. Again, she mentioned that she’d like to have several more. My sister agreed that it was a nice cup.

The next morning, I came downstairs and my sister and Mom were having coffee and Mom was drinking out of a different cup. I looked in the cabinet and didn’t see her Courage cup anywhere.

“Mom, where’s your coffee cup?”

“I don’t know,” she said. “I’ve looked everywhere.”

When Mom got in the shower I told my sister to follow me into Mom’s room. I told her I knew that cup was in there somewhere.  I checked the dresser drawers and Kendra looked around the bedside table.  Sure, enough, she found it. Mom had wrapped it up in two different hats she wears, the cup wrapped in one hat and then those wrapped in another hat.  Who knows what her reason was. I told my sister maybe she was afraid you’d leave with it, or maybe she thought if she lost it, I’d go ahead and get her another one. I put it back out on the counter and when she finished her shower she was drinking from it again.

A few days later, she and I were doing the morning dishes and she mentioned having more of those cups and I asked her, as I dried her favorite cup, “do you feel like you need extra courage, Mom?”

She said, “no….not so much anymore.”

 

I guess I’ll get her three more for Mother’s Day.

I'm going BANANAS!!

 

Mom likes bananas. She eats them all the time. I have to keep them put up because she’ll eat them all day and if they are out of sight, they are out of mind. In her case, they don’t have to be completely out of sight. Just kind of ‘put up’.  I was out running errands today and was only gone about an hour and a half. When I got home, Mom was sitting at her usual place at the kitchen table. I noticed two bananas on the cabinet, so I ask her, “Mom, have you been eating bananas?”

She wheeled around real quick and said, “I had one.”

“You and I bought eight at the store just yesterday and there are only two left.” (Stan took one to work).

“I might have eaten two,” she said.  Very definitively, I might add. I didn’t want to agitate her so I said, “I don’t care if you eat them, but if you eat too many you might get diarrhea.” That made her laugh.

Then, about three minutes later, she said, “If I only ate two, who do you suppose ate the rest?” 

Love begins with me

I have added a link to a site I recently discovered. You’ll find it on the right under Learn to LOVE unconditionally. May 1 is Global Love Day. I never knew there was such a thing until I happened upon this site.  There are some interesting and beautiful thoughts on it and its worth checking out.

 

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Good News For Mom

Today my nephew called me to tell me he was going to be a Dad. He was so excited and he wanted to tell his Grandmother that she was going to be a Great-Grandmother. I put her on the phone but I was a little worried about how the conversation would go. I made sure I told her that her Grandson was on the phone and told her which one. I long ago gave up just handing her the phone. If I did that, the first five minutes would be spent on not only names, but lineage, too. I was in the other room and I could hear her side of the conversation. They would talk and soon she would say, "who is this, again?" and then, "Of course, Richard! Where are you located now?" And he told her and they talked some more and then she asked, "now, who am I talking to again?"

He finally managed to tell her about the new baby coming, and then they went through the names...I heard her say, "the baby's name is Tatum? No? Oh, oh, oh, you're going to name the baby Tatum? Oh! OK, I see. The Mother's name is Tatum!" It went on like that for a few minutes and again I heard her say, "Tell me who this is, again...you've got me so excited, I can't remember!"

I felt so sorry for my nephew. He was SO excited to tell us this news. Mom's first great-grandchild. He knew, though that it wouldn't be easy but I did feel so sorry for him. But I let them talk about 10 minutes or so and asked her if I could tak to him. They said their I love you's and their goodbye's and I got back on the phone. I was worried that the conversation might depress him and he had sounded so euphoric over the news that he was going to be a Dad.

I got back on the phone and the first thing he said was, "Man, I LOVE her! She's just awesome." He went on to say how much he wanted her at his wedding and couldn't wait for her to hold this baby that won't be born until next December. He has such a huge heart, that boy. Especially when it comes to his family.

I’m so happy for Mom and for my nephew. When Stan got home I told Mom to tell him about her new great grandchild on the way. She remembered and relayed that Richard was going to make her a great grandmother. (ok, I helped a little, with who’s it was, again.)  ;)  But we’ll continue to talk about it so she might remember it for a while. I told her she should start a simple crocheted blanket for ‘it’.  About all she can do anymore is a simple crochet stitch.

Mom's dog heaven

This was Mom last Fall with Maggie, Jack and Addie. Her dog heaven.

About my Mom...then and now

My Mother became an X-ray technician back in the forties.  She loved it and talked about it often. She used to tell a story about how she x-rayed one of the Wright brothers. Yep, those airplane guys. She worked in a hospital at the time in Dayton, OH, and he was probably in his eighties then. She's a little fuzzy about that story these days, depending on what kind of day she is having.

She met my Dad when he had a wreck and had to have X-rays. They spent the next 50 years together. Literally, as they were married six weeks after they met. Mom quit to be a wife and Mother. There were six of us and she was a great seamstress. She made a lot of mine and my sister's clothes when we were little. She even made tons of barbie clothes. She could modify a pair of blue jeans into the coolest, widest bell bottoms on the block! They were awesome.  She could knit and crochet sweaters, afghans, hats, you name it. When her first granddaughter was born, she knitted her and her Mother matching sweaters. Now she can do one basic crotchet project where she cuts a dishtowel in half and crochet's the ends so that they hang in your kitchen, on the stove, or fridge. They are cute, and it's a good thing I think so because at last count I had 46 of them.

 

If raising six kids wasn't enough she raised a litter of 6 Great Dane pups. The mother had died a few days after birth. Mom loves her animals. We have three dogs in the house now. She is in "dog heaven" and I hear it about 6 times a day. I'm used to that, though. :)

 

She was an artist, too. She loved to sketch and was always doodling. She did several canvas paintings through the years. She helped to teach my 5th grade art class at St, Francis of Assisi.  She was always writing poetry, too. I think she probably always threw it away, but later in her life she started writing poetry for family members.  She's long since stopped both drawing and doing much writing. Two yeaers ago I wanted her to draw a pond lily on a bench in my back yard. She looked directly at the picture I showed her and drew what looked like an Iris. In other words, nothing like what I showed her, but it was still okfor the bench, just very odd.

She sure doesn't deserve this disease, but nobody does. They say it's harder on the family than on the afflicted. That certainly is an understatement.  Nobody seems to understand it. When you tell people, the first thing they ask is usually something along the lines of, "Have you found a good nursing home?"  It may come to that some day, I can't promise it won't. This last visit she had with my brother was hard on him and he mentioned looking for a good ALF. But I want to try and do it as long as I can. She's my Mom. I don't consider myself any more of a person than my sibs for wanting to do it. I just feel it in my heart as something I need to do...and that I want to do. It just feels right. 

She's got some really cool stories...when you hear them for the first time.  She sometimes gets two or three completely different stories intertwined now and they morph into something new regularly. And she occassionally won't be able to finish one she starts. She is usually best with her stories in the mornings. 

Here's the Story...a background

Here is a little background information for you. My Husband and I take care of my Mom, who lives with us. Mom was diagnosed with Alzheimer's in 2003. In October of 2005, we moved her out of her house and that first year she spent 3 months with each of us. I have three brothers and two sisters. That was hard on her so...long story short, my brother and I share the task. He lives in Florida, I live in Indiana, so it works out for everyone, including Mom. She gets to spend the winters in Florida and summer's here. It takes her about a week to acclimate each time, but for now it's working out great. I know it won't always be this easy...

I'm a laid-off auto worker but it gives me time with Mom. She doesn't need 24/7 care yet, but we don't like to leave her alone for more than a few hours at a time, either. But sometimes I feel like my brain is turning to mush, too, just from lack of use!