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Somethingelsa Asked July 2021

Stages of Alzheimer’s. Anyone else find the stages of AD a bit frustrating?

Anyone else find the stages of AD a bit frustrating ?
My DH has progressed physically quite a bit and is definitely in a latter stage with that. Cognitively there sure is progression in many many ways, like following directions, judgement, comprehension but does still know who I am. He knows our children and grandchildren are family but doesn’t always connect how or who belongs to who. If I wasn’t personally involved with this awful disease I’d find it fascinating. I do try not to focus on these “stages “ as it really doesn’t help but I guess I would just like to know if others are confused as well and just going with the flow as I am trying to do .

sjplegacy Jul 2021
What you call stages of AD, are actually stages of dementia, of which, AD is one cause. The stages are suppose to be typical for all the neurodegenerative diseases and also VaD. I believe, however, they should be considered more of a continuum rather than stages. It's not unusual for someone living with one of the dementias to revert back to a previous stage, or to jump ahead some stages. I also don't think everyone experiences all 7 stages of dementia symptoms. What if someone exhibits symptoms from different stages, where would you place them? Different dementia diseases can manifest themselves differently. You can use the stages as a guide in anticipating future symptoms, some of which may never occur, but not to determine specific durations of any phase or, necessarily, what to expect next for your LO. What's important, I think, is not so much where a person is on the continuum, but how the caregiver addresses the progression of the disease, and that the caregiver realizes there are limits to his/her ability to properly care for their LO.

MJ1929 Jul 2021
Remember when your kid didn't sit up at the same time as your other kids?

My eldest walked at 19 months. My second walked at 10 months. This is why I threw out "What to Expect When You're Expecting." My kids didn't follow the timeline in the book at all and it was beyond frustrating.

Babies and their milestones are all over the place, and so, too, are Alzheimer's patients. Best to just go with the flow and live in the moment.

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Beatty Jul 2021
Frustrating? Yes.

We tend the use the simple Early, Moderate, Advanced here. Or called Early, Middle, Late. I find it ok.. very simple - maybe too simple.

I really dislike the 7 stage model, as quite complicated & many people do not fit this model in order.

I much prefer Teepa Snow's Gem model. The focus is on care & what's still working, rather than deficits. I hope this becomes the new standard.

funkygrandma59 Jul 2021
You are correct when you say not to focus on the stages, as each person suffering with Alzheimer's/dementia decline at different paces, depending on what type of dementia they have.
You're best to just try and enjoy whatever time you have left with your loved one, and also enjoy that he still knows who you and your family are, as that could change at any time.
My husband who was diagnosed with vascular dementia(the most aggressive of all the dementias, with a life expectancy of 5 years) in 2018, died in Sept. 2020, while a friend from my local caregivers support groups wife has had Alzheimer's for the last 18 years, and she's now just in the final stages, so as you can see, it ranges tremendously.
You are best to just keep doing what you're doing, and that is going with the flow. Best wishes.

MelissaPA2AZ Jul 2021
I am so sorry you are going through this. With my parents (both had dimentia at the same time, different types) I found it easier to cope by "intellectualizing." By that I mean I did try to sort of look at it as a case study. That kept me away from the emotional experience. Essentially like what you mentioned about it being fascinating if it hadn't hit so close to home. I chose to focus on that "fascinating" aspect as a coping mechanism. And what I did learn is that the stages (mom's dementia was AD) are just guidelines. Some of mom's symptoms were stage 1, while some were stage 4. One day she would seem to be clearly stage 3, the next stage 5 and a day or two later, stage 2. I concluded that each person's journey through this hellish disease is unique, and can differ from day to day. The brain is just too complex to predict how things will affect it. So for me, taking each day as it comes was a good strategy. But just as the disease can be unique for each person, so too, the best way to cope is unique to each person. When you find what helps you get through it, don't let anybody tell you that is the wrong way (save for self-destructive methods; then I would encourage that person to get some help instead of trying to go it alone). Wishing you love and support as you travel this most difficult road.

Taarna Jul 2021
Each person is different and the brain of each is effected uniquely. The goal of stages is mainly to help medical personnel and caregivers in planning care. Medications may work in earlier stages but not in latter stages. Treatments may work in some stages but not others. Also, each person reacts differently to treatment. That is why caregiving is part science but mostly art. As long as you can care for your DH while making sure your own needs are met, then stages are not really an issue.

However, stages do show the usual progress of this disease process. Use the information to help you plan for the future. I am most concerned that caregivers need to prepare for the time when the one cared for needs help 24/7 - like when they are confused about day and night or when the caregiver can not get 7-9 hours of uninterrupted sleep. Please consider how you will handle the time when your DH may need more help than you can provide alone.

PAGE710 Jul 2021
I, FOR ONE, AM GRATEFUL TO HAVE THE 7 STAGES OF ALZHEIMER'S DISEASE CATEGORIZED THIS WAY. WE HAD ONLY THE ORIGINAL 3 STAGES WHEN MY HUSBAND STARTED ON HIS JOURNEY IN 2002.
WHEN I REALIZED THERE WAS A PROBLEM I GOT HIM TO A TOP NOTCH NEUROLOGY DR IN TAMPA FLORIDA. THE DR PUT MY HUSBAND THROUGH ALL KINDS OF TESTS, CT SCANS, MRI, ETC. THE LAST TEST DONE WAS A SPINAL TAP. THE REPORT CAME BACK POSITIVE FOR THE P TAU PROTEIN...THERE WAS A LARGE AMT ON PLAQUE AND TANGLES IN HIS BRAIN. HIS SHORT TERM MEMORY WAS BEING SHORT CIRCUITED. THE DIAGNOSIS WAS EARLY ON-SET MILD TO MODERATE ALZHEIMER'S DISEASE. BASED UPON THAT HE WAS FORCED TO TAKE EARLY DISABILITY RETIREMENT FROM HILLSBOROUGH COUNTY PUBLIC WORKS. HE WAS 54 YEARS OLD.
AT THAT TIME THE AD ASSOC HAD ONLY 3 STAGES OR CATEGORIES...MILD, MODERATE, SEVERE. BUT NOW WITH THE 7 STAGES OR CATEGORIES...I AM ABLE TO KEEP TRACK OF WHERE MY HUSBAND IS IN THE PROGRESSION. YES, THERE WAS TALK OF MAYBE HE HAD THE VASCULAR TYPE, BUT OVER TIME HE DID NOT FIT THE PROFILE FOR VASCULAR, NOR FOR THE LEWY BODY TYPE.
HE WAS BEING FOLLOWED BY 3 DR'S THE 1ST 2 YEARS FOR ANY MENTAL AND PHYSICAL ISSUES. MEANWHILE, THANKS TO THE AD ASSOC OF TAMPA THEY WERE A BIG HELP TO ME. I READ AS MUCH AS I COULD ABOUT THIS DISEASE BUT THERE WASN'T AS MUCH KNOWLEDGE THEN AS THERE IS NOW.
SO, YES, I AM SO GRATEFUL TO HAVE THE 7 STAGES BECAUSE IT HELPS ME TO KEEP A CHECK ON THESE STAGES.
AS OF FEB 2021...MY HUSBAND IS IN A NURSING HOME AND I AM FIGHTING FOR HIS RIGHT TO TENNCARE MEDICAID FOR LTC. HE IS 73 AND HAS MULTIPLE HEALTH PROBLEMS. HIS SHORT TERM MEMORY STARTED DECLINING MORE OVER THE PAST YEAR AND A HALF. I WAS ABLE TO SEE THAT HE IS NO LONGER IN THE MILD COGNITIVE STAGE. HE EXHIBITS SIGNS FROM STAGE 3 ONE DAY, THEN HE MIGHT GO UP TO STAGE 6 THE NEXT DAY. WHEN HE LOST CONTROL OF HIS BLADDER AND BOWELS, AND HE WENT INTO THE SUNDOWNER'S MODE, THEN HE BECAME WEAK, CONFUSED, AND DISORIENTED. I HAD TO SEND HIM TO THE ER, FROM THE HOSPITAL HE WENT TO A REHAB FACILITY. THEN HE CAME HOME ON FEB 13, AND ON FEB 17, BECAUSE I WAS SO SICK AND IN PAIN WITH GOUT I HAD TO CALL THE AMB TO PICK HIM UP AND TAKE HIM BACK TO HOSPITAL. FROM THERE HE WENT TO A NURSING HOME PENDING MEDICAID APPROVAL. HE WAS DENIED AND I AS HIS DPOA, FILED AN APPEAL. WE ARE WAITING FOR A HEARING DATE ON THAT.

MY POINT TO THIS LONG POST IS TO LET EVERYONE KNOW...PLEASE DO NOT DISMISS THE 7 STAGES OF ALZHEIMER'S DISEASE. STUDY IT. IT REALLY IS A BIG HELP BECAUSE YOU, AS THE CAREGIVER OR THE SPOUSE...WILL BE ABLE TO KNOW WHEN THEY ARE DECLINING OR MAYBE THEY ARE JUST HAVING A BAD DAY. HOW CAN YOU TELL IF AND WHEN THEY ARE LUCID? THAT IS A GOOD DAY WHEN THEY CAN ENGAGE IN A CONVERSATION WITH YOU AND IT ALL MAKES SENSE. A BAD DAY IS GOING TO GET YOU "I CAN'T REMEMBER" OR "I FORGET". LOOK FOR THE BLANK STARE...AS IF THEY ARE TRYING TO STARE YOU DOWN. THAT IS A BAD DAY. THEY WON'T BE ABLE TO TELL YOU WHAT THEY ATE FOR BREAKFAST AND NOW IT IS LUNCH TIME. THOSE 7 STAGES ARE VERY GOOD GUIDELINES.
ONE LAST THING...NO MATTER WHAT THE SITUATION DO NOT ALLOW THEM TO SIGN ANY PAPERS UNTIL YOU, THE SPOUSE OR CAREGIVER WITH THE DPOA, CAN LOOK OVER THE PAPERS.
SOMETIMES, A NURSING HOME WILL TRY THAT BUT IT IS AGAINST THE LAW. IT IS FRAUD. IT IS ELDER ABUSE .
IF YOU ARE THE SPOUSE...STAND YOUR GROUND. DO NOT BE AFRAID TO CHALLENGE SOMEONE WHO MIGHT BE TRYING TO TAKE ADVANTAGE OF THE AD PATIENT. I AM THE WIFE/CAREGIVER/DPOA/AND A RETIRED LPN NURSE. I AM 81 YO AND STILL FIGHTING FOR MY HUSBAND AND DEALING WITH MY OWN HEALTH PROBLEMS. STAY ENCOURAGED...READ YOUR BIBLE...LISTEN TO SOME OLD GOSPEL HYMNS THAT MOST OF US GREW UP ON.
BLESSINGS TO ALL OF YOU AS WE ALL WALK DOWN THIS ROAD.
Llamalover47 Jul 2021
PAGE710: Thank you for your post and your profile information, which states that you have vision problems - thus your need to use all caps, I may presume. I, too, have a disease of the eyes.
Grandma1954 Jul 2021
I "laughed" at stages.
I found the process fascinating, educational and downright challenging.
My Husband was doing things he should not have been doing up until about 2 weeks before he died. But he stopped doing things early on that most would do.
I do not know for sure but I think he also had Vascular dementia with the Alzheimer's so that might have played a big role in what he did do, couldn't do.
go with the flow.
think outside the box when it comes to solutions for a particular problem
As each person with dementia is different so is/ are the problems they have as well as the solutions to those problems. Often the only solution to a problem is to wait it out and the decline will change one problem for another. Made me realize that todays "BAD" day might be considered a "GOOD" day in a week a month, or in some cases a day.
HardSeason Jul 2021
Yes! You said this very well.
When I first posted a question about my mom on here over 2 years ago, I said she had lost almost all her language ability. Someone told me I needed to learn the Stages of Dementia, because it sounded like my mom was at the end stage and only had another year to year and a half to live.
I looked up the stages and got even more confused because of all the things my mom could still do. But I also started researching a lot more and realized that my mom had Frontotemporal Dementia (FTD), which means a different part of her brain is affected than in AD. That explained a lot. The trajectory of FTD is different than AD, but still every individual case is different and there are no hard and fast "rules" for how it will go.
"Often the only solution to a problem is to wait it out and the decline will change one problem for another." EXACTLY! Mom used to refuse to let me clean her. Now she's totally docile about baths, but also becoming incontinent, which means a whole lot more baths are needed. It won't be long before I'll have to find her another caregiver because I know I can't do it all.
DrLokvig Jul 2021
I pay no attention to "stages" - in my professional world we only talk about beginning, middle, and end. Several clients experience all three stages as the day progresses.

Marylepete Jul 2021
Big hugs to all of us going through this brain robbing disease. It is a roller coaster ride for loved ones and caregivers. From my past experiences as my Mother’s caregiver with it, taught me to live in the moment, because it can all change in a second. Try not to have expectations, as hard as that is. Find even a very small thing to give you and the loved one comfort and love. Journaling has helped me a great deal as my husband, per his doctor, is now in stage 6 of 7. The stages give you an awareness to the care that might be needed and what to expect in the future. But each stage can last for different periods of time and be somewhat different for each. With all that being said, this is for all of us. Show and give your love in every way possible now. Don’t wait for another day. And take care of yourself as we grieve what we are loosing, even while they are still alive. Cherish the days and years we have had with them. ❤️

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