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Predicting future pace of decline?
VRAAB
Posted: Friday, January 11, 2019 10:02 AM
Joined: 7/23/2018
Posts: 173


I know there is no absolute way of predicting a LO's pace of decline according to the professionals but wanted to put this out there to the experts (people living with this disease). I've look at the TamCummings and Fast predictions also.  It scares me that Stage 7 can last as long as all of the previous stages combined. Why? Is there a pause in decline during stage 6?then another longer slower decline for stage 7? Why is stage 6 & 7 predicted so slow as compared to the other stages? Is this the norm or the extreme?

One article mentioned something that resonated with me.  It said future rate of decline can be estimated by the past rate of decline. Have any of you seen this? My DH seems to have zipped through stage 5 into 6b at a faster pace than the years previously where he was considered MCI and beginning ALZ. He seems to be at a pause this month, most daytimes if he is kept busy, he is cognizant and verbal, can answer simple questions, will talk to strangers (but doesn't make sense). Not incontinent yet.  Evenings can be hard at times, just had a delusion last night. My DH has always been the hardest worker and I feel like he fights each decline before I am aware of it, then eventually gives up and that memory or ability is gone. He is noticing that his verbal skills are declining, will sometimes say "I can't talk today" when stumbling over something he wants to say.  I am assuming he will eventually stop trying to talk as he knows he cannot find the words. He was always the talker in our marriage. I loved listening to his stories. I was the quiet one and find myself trying to fill in the quiet now and become more talkative. It will be so painful to imagine he is thinking about so much but knows he can't verbalize it so doesn't try anymore. 

I have always been an avid reader and have read so much about this disease but keep finding the best advice here on this forum. Thanks for all of your expert help. 


Crushed
Posted: Friday, January 11, 2019 12:54 PM
Joined: 2/2/2014
Posts: 4124


The short answer is that the stages have almost no direct connection  to the underlying disease process. as the disease progresses, the individual loses capability, which is what the stages measure.  But the stages are not "equal interval" even on any given person. My wife is stage 7 after 8 years.  No one has any idea how long it will last.
Katy sue
Posted: Friday, January 11, 2019 1:48 PM
Joined: 9/24/2016
Posts: 184


One persons dementia is only one journey. I only know that my DH was diagnosed Feb 2016 at stage 3. He is now at 7, double incontinent, senseless speech, stooped and shuffled walk, still wandering but more sleeping and very tired. Still knows me.   Still eating. Stage 6 was probably the shortest, lasting just this summer and early fall. Placed oct 9. Who really knows how long 7 will last? I am told he may only have a few months. He will go when he is ready and I pray only that it is sooner than later and is peaceful. It’s the only thing I have control of now.
Doityourselfer
Posted: Friday, January 11, 2019 2:10 PM
Joined: 9/5/2017
Posts: 104


My EO DH began stage 6 around June 2017 where he needed assistance buttoning his shirts and didn't know how to put a belt on.  In November 2017 he needed help turning on the shower.  This month he is beginning the incontinence stage, which is minor so far.  This morning around 6:00 I didn't hear him get up to use the bathroom.  He woke me saying he had a problem with water.  I went into the bathroom and found he urinated a little next to the toilet on the floor and rug.  I usually hear him walking between our bedroom and the hallway because the floor squeaks and I get up to show him where the bathroom is.  Throughout the day I have to show him where the bathroom is.
citydock2000
Posted: Friday, January 11, 2019 2:12 PM
Joined: 9/7/2017
Posts: 723


Also keep in mind our LOs may be susceptible to other ailments as well.  My stage 6 FIL got aspirational pneumonia - very common - and died (unexpectedly) within a week.  

You just don't know. 


JJAz
Posted: Friday, January 11, 2019 7:31 PM
Joined: 10/21/2016
Posts: 2158


VRAAB wrote:

 I've look at the TamCummings and Fast predictions also.  It scares me that Stage 7 can last as long as all of the previous stages combined. Why?

This freaked me out too.  I talked to the doctor and I can't remember the details of why, but those scales are not intended to be additive.  Our doc was forthcoming with a predictive range, based on his co-morbidities, Lewy Body diagnosis, history and her experience.  Talk to your doc about this.

Blessings,

Jamie



Mike&BrendaTX
Posted: Friday, January 11, 2019 11:21 PM
Joined: 7/10/2017
Posts: 427


VRAAB, for what it's worth, I kept a record of when Brenda went through the stages.

She was in stage 2 approximately 2004.  During this stage, she seemed pretty normal except that she totalled two vehicles due to inattention, which was really unlike her.  She had never even got a ticket much less been in an accident.

Stage 3 started in 2007, right after her cancer operation.  This stage went slowly but was a steady decline, and something was clearly wrong. She was formally diagnosed with MCI (stage 3) by a neurologist in April, 2012. Near the end of 2012, I retired from my job to become a 24/7 caregiver, since she needed someone home all the time since by that time she was mid-stage 4.

By April, 2013, she was in late stage 4, (she went through stage 4 in one year, and went through stage 5 in one year, also, as diagnosed by our doctor)  By May 2014, she was nearing stage 6.

Between 2014 and 2015, she lost 60 lbs. She went through stage 6 between late 2014 and June, 2016 (about a year and a half).

She started stage 7 in July, 2016.  She has been in that stage for more than 2.5 years.  Most of that time was a very gentle decline, almost a plateau, although she lost another 25 lbs. In the early part, she lost her ability to speak except for a few words.

Then, 6 weeks ago, she started a severe decline.  She had been able to walk well, but at the start of that 6-week period, overnight she lost the ability to walk, but could still stand with some help.  One day ago, she lost the ability to stand even with help.  She has no balance and her joints are stiffening. We are now using a hospital bed and a wheelchair all the time. Today we (the Visiting Angels part time caregiver and I) could hardly get her awake and out of bed, and all day she uncharacteristically napped.

We are entering the last part of stage 7, and she went from a slow decline to a very rapid one.  It seems that was the way it was all along -- some stages really went fast, and some slow, but it could change in an instant.  Frankly, I'm worried about this latest development.

Mike

 

 


VRAAB
Posted: Saturday, January 12, 2019 9:25 PM
Joined: 7/23/2018
Posts: 173


Mike, let me start by saying how sorry I am to hear of your wife's recent rapid decline.  I know this is heartbreaking for you. I have admired how loving you have taken care of your wife through this horrible disease and have learned a lot from your posts.  I also appreciate the detailed post you made about the pace of your wife's decline by stage and description of skills lost. It is very similar to my own DH's who is beginning stage 6, about 6b now. 

May peace be with you and your wife.


Seasons In The Sun
Posted: Sunday, January 13, 2019 10:47 AM
Joined: 5/21/2018
Posts: 98


   I have read the different articles about stages and duration and have come to the conclusion that they are so general it tough to figure out. My DW has had one or another from stage 5,6,7, for the past year or so. Everyone is different. My DW has been incontinent for two years now. She started having difficulty walking toward the end of 2017.  She is totally wheelchair bound for the past six months. 

Much like Mike I am also 73. We have much in common. I lift my Dw out of bed and into bed every day. She cannot stand without me holding her in a bear hug. Five days before Christmas she was put on Hospice care at home. Hopefully I will be able to keep her home until the end. It may be tomorrow or a few years from now. No way of knowing but I 'm not going to dwell on it. Take one day at time. Best wishes to all .


lhfry
Posted: Monday, February 18, 2019 6:40 AM
Joined: 12/30/2017
Posts: 13


The main problem with predicting the future course of AD is remembering the past.   AD begins or I guess can begin years before there is any noticeable decline, so when 20 years is cited as the average length of the illness, probably 10 of that is behind you before any diagnosis is made.   

Looking back, I can see that maybe as long as 15 years ago my husband began to show symptoms but I certainly didn't recognize them for what they were.  And he is the 6th child of 10 and the 4th (all male) to suffer from AD so I had seen it before.   Two older brothers have died, both at 85, his next eldest brother is 83 and in a nursing home now for 2 years.  The 2 older brother's wives cared for them mostly at home until almost the end.   The wife of the 83 year old was also demented and the children couldn't cope.  

My husband is 81 and probably in stage 6a or b of the Fisher scale so I am counting on another 4 years based on family history.  That will be a total of about 20 years but overt symptoms didn't show up until about 5 years ago.    


Carolyn613
Posted: Tuesday, February 19, 2019 4:38 PM
Joined: 7/15/2016
Posts: 1000


My husband was diagnosed at age 64, just after his birthday. He was in stage 3 going into 4. A year later he was in stage 4, going into 5. Still very oriented to person and place and time. Executive function declining, but otherwise could perform all his ADLs by himself. Four months later he was going into stage 6. Two months after that he was dead. Diagnosis to death: 20 months. He was 65, just shy of his birthday.

 

When you've seen one person with AD, you've seen one person with AD.


markus8174
Posted: Tuesday, February 19, 2019 8:01 PM
Joined: 1/25/2018
Posts: 384


As much as I hate this disease, I sometimes think the "fast progression" form is a blessing to the sufferer and the caregiver. Once you get to late stage 6 or early stage 7 the person you love is largely lost or worse, trapped brain and body that don't obey their will. I pray my DW is blessed with peaceful passing before she gets to the turn-feed-water-clean stage.  Heart disease is rampant in her family, as well as strokes, and diabetes. I don't want her to die, she is just getting to stage 6, but I hope her bad health history helps her leave this world before her Alzheimer's takes all her dignity.
Seasons In The Sun
Posted: Wednesday, February 20, 2019 8:07 AM
Joined: 5/21/2018
Posts: 98


Markus, wish there was a like button. Agree with you.
 
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