It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-27-2011, 10:13 PM   #1
Senior Member
(female)
 
Join Date: Mar 2008
Location: Canada
Posts: 243
bearcubs HB Userbearcubs HB Userbearcubs HB Userbearcubs HB User
Progression of Disease

Happy New Year to everyone. I hope you had a Merry Christmas and Santa was good to all of you.

I have a question. I was just wondering when a person has dementia and the disease progresses. How does it happen? Does a person just slowly stop speaking in sentences then just words and then stop talking or do they just wake up one day and are not able to speak. The same as walking. If they are walking does a person go from walking to a walker then a wheelchair. Can someone explain what some of the steps are from being able to walk and talk clearly to not being able to talk coherently, to walking to being bedridden. I know everyone is different but generally speaking and if a person gets to one of these stages, how long approximately can they be in that stage and go on to the next. If bedridden, how long does that last? I am just hoping my mom doesn't get to that stage but I am just wondering what to expect. I am not worried or dwelling on it, I would just like to know. I pray my mom doesn't have to go through this that she goes to heaven before it progresses to this. Thank you.

bearcubs

hugs

 
The following user gives a hug of support to bearcubs:
sleepless84 (01-03-2012)
Sponsors Lightbulb
   
Old 12-27-2011, 11:52 PM   #2
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Progression of Disease

Bearcub... the best answer is to expect the unexpected. No, there is no time line or normal progression that can you count on. As for speech, they usually lose their nouns first. Name of people and objects go first. They begin to use pronouns along with this and that. Some will then begin to have trouble with long sentences. The beginning of the thought comes but they lose their focus before they finish the sentence. Eventually the words sound more like jumble. This can happen quickly or slowly or not at all. Mom lost her ability to communicate rather quickly and I know other that did not lose the ability to speak coherently. Walking is the same. Some lose balance, some muscular coordination, and some leg strength. In my Mom's case her balance is off and she has lost some coordination but she is still walking strong late into the disease. Other have lost the ability to walk early. Many times there is a fall risk stage before they actually stop walking and even after they are unable to walk effective they think they still can and will try to stand. Both are so individualized it is very hard to find an average You just have to watch Mom and notices changes. If she begins to lose her words, leans to one side when she walks, or starts falling then you know something different is coming.

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
bearcubs (12-28-2011)
Sponsors Lightbulb
   
Old 12-28-2011, 12:18 PM   #3
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Progression of Disease

I agree with Gabriel that it's a very individualized process. It can be either slow or fast. DH was diagnosed at a very early stage, when he was just having trouble finding some words. He covered up very well by switching words, or by using expressions that he had used his whole life. DH didn't appear to have any memory or other cognitive issues at that stage of his early-onset Alzheimers, although we've since identified some behavioral changes that we think were also associated with the disease.

Over the years, DH would talk less and we talked more. It was such a natural progression that we didn't realize that his verbal skills were becoming responsive (where he'd nod or say yes or no, or use general expressions that he had used his whole life) as opposed to being communicative (where he'd be telling us something or actually be responding to something we said).

By the 8th year, his speech was more nonsensical and the majority of his words had become gibberish. He was still communicating when he was admitted in a nursing home, although we didn't fully realize the extent of his disease. We thought he was "following" us when we'd talk to him, since he'd nod or otherwise say something that seemed appropriate. We did know by then that he couldn't follow directions anymore, and that there were words he didn't recognize. For example, he would look blankly at us if we told him to sit down.

DH was admitted to a nursing home two years ago (approximately year 8 after his diagnosis) when his day care center could no longer keep him. DH was having behavior issues, along with toileting and incontinence issues. I think I've gotten fuzzy on the timeline, since it seems we've been living with this disease forever. I did some anniversary status updates on this board, if you want to try to dig them out.

Going into our 10th or 11th year, DH still primarily talks gibberish but will occasionally use words. A month ago he looked at me and said "You're so beautiful" out of the blue!

Walking can also proceed differently for patients. DH walked just fine (in fact, he wouldn't sit down) until this year. Over a period of a week, he started leaning sideways. In the same month, he started having trouble getting into chairs. We couldn't tell if he couldn't figure out how to sit, or if his depth perception was damaged so that he became afraid of falling. He'd miss the chair. If we helped him to sit on his bed, he'd need help to position his body. He shuffled, appeared very unsteady, and began having falls. Within 2-3 months he was placed in a geri-chair as a fall risk. Within two months of going into the geri-chair, it now appears he no longer knows how to walk at all. Now he won't put weight on his legs when he's lifted out of the chair. In the same time frame, he also needed more assistance to eat. He is fed his meals by an aide at this point. There was a 3-month period where we saw a lot of changes, after months of relative stability.

In his ward there are patients who can still use walkers, and patients who still walk but who won't get out of bed. There are patients with advanced AD who talk clearly (but can't remember what they just said), and patients who talk gibberish or who have stopped talking completely.

Bottom line is that there's no easy way to predict with certainty the path anyone's disease will take. There are events that seem to be more common, but the time-line can vary widely. We had plateaus that lasted for months, and some that lasted for weeks. Some "drop-offs" appeared almost overnight. It didn't mean that the disease wasn't progressing the whole time -- just, perhaps, that the work-arounds for the drop-offs stopped working as well.

Last edited by Beginning; 12-28-2011 at 12:21 PM.

 
The Following User Says Thank You to Beginning For This Useful Post:
bearcubs (12-28-2011)
Old 12-28-2011, 03:01 PM   #4
Senior Member
(female)
 
Join Date: Mar 2008
Location: Canada
Posts: 243
bearcubs HB Userbearcubs HB Userbearcubs HB Userbearcubs HB User
Re: Progression of Disease

Thank you Deb and Beginning for clarifying this for me. This disease is really unpredictable. I am so happy to be part of this group. It is wonderful to have a place to come and get help and know there are people who understand and care. Thank you again! Happy New Year!!!!!!

 
Old 01-03-2012, 09:53 PM   #5
Junior Member
(female)
 
Join Date: Jan 2012
Location: Conway, SC USA
Posts: 32
sleepless84 HB Usersleepless84 HB User
Re: Progression of Disease

I honestly do not know how long each stage takes. I do know that with my own mother it has happened quickly. Within the past year since her diagnosis she has gone from speaking coherently to not speaking at all most of the time. If she does speak it is very strained and jumbled, and never more than one or two words. She is still walking around on her own, but things such as getting in and out of bed or the bathtub have become increasingly difficult for her to do on her own. I hope you find the answers you are seeking and I will continue to watch your post because I have some of the same questions myself. My prayers are with you.

 
The following user gives a hug of support to sleepless84:
bearcubs (01-03-2012)
Old 01-03-2012, 10:48 PM   #6
Senior Member
(female)
 
Join Date: Mar 2008
Location: Canada
Posts: 243
bearcubs HB Userbearcubs HB Userbearcubs HB Userbearcubs HB User
Re: Progression of Disease

Sleepless84, thank you for responding to my post. I will say some prayers for you tonight and may you feel comforted knowing that someone who is wearing the same shoes as you does care. Please keep posting and I look forward to your posts as well. God Bless You and your mother.

Luv Elaine

 
The following 2 users give hugs of support to: bearcubs
debbie g (01-04-2012), luyingjie (01-24-2012)
The Following User Says Thank You to bearcubs For This Useful Post:
luyingjie (01-24-2012)
Old 01-04-2012, 02:53 AM   #7
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Progression of Disease

It is so frustrating not to be able to look ahead and know what will happen (and when). Sometimes you think you're prepared for the next step, but you really aren't.

I've been upset over the last few days, since two of the patients on DH's ward passed over Christmas. Patients have passed before, of course. Some of them were expected, such as the lady who was nearly 100. Others were more sudden. One of the people who died suddenly over Christmas always has seemed to be in much better shape than DH. He was a patient in the NH when DH was admitted two years ago. He and DH were NH "buddies" until DH's illness had progressed to the point where DH was no longer interacting socially on any level. This man's illness seemed to be progressing much more slowly. He was still talking fairly coherently and using the bathroom by himself most of the time.

I thought that I was well prepared for the inevitable progression of DH's disease. We've recently handled DH losing the ability to walk and to feed himself. DH has also begun to have a few seizures (not uncommon with Alzheimers' patients). His weight appears to be dropping again. On the other hand, he is alert and has recently surprised us by saying things that make sense again after months of gibberish. For example, he has said "good-bye," a few times when we were leaving and has said "what about me?" when they started serving dinner. Before Christmas he clearly said "You're so beautiful" to me! The moments of clear speech after months of gibberish have definitely surprised us. He still appears to recognize us most of the time.

If I'm upset over the sudden passing of a gentleman who was part of DH's life in the NH, I suspect that I'm not as well prepared as I thought to lose DH.

 
The following user gives a hug of support to Beginning:
luyingjie (01-24-2012)
The Following User Says Thank You to Beginning For This Useful Post:
luyingjie (01-24-2012)
Old 01-04-2012, 08:27 AM   #8
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Progression of Disease

Wish I did have that crystal ball Beginning! I also know it is unpredictable just how ready you are. I was just the opposite with Dad. I thought surely I would fall apart. There was no way I was ready to lose the rock of my life. Yet when the time came, after the long journey we had through his heart issues and dementia, it was a relief. I also had Mom to focus on which I think helped. I thought Mom would be a bit easier but as the time nears I am not sure about that.

Each death in the unit reminds me... that is where we are headed. Days meld into each other and we move along in the moment. Then someone that is not as bad, or was there a shorter time, or was connected to our loved one in some way passes and it is a reality check. After one little lady passed just before Christmas, I looked around and realized that there was only one other lady there that was present when Mom was admitted. That was my moment of reality.

I am not sure we are ever truly prepared... we just get through it the best we can.

Love, deb

 
The following user gives a hug of support to Gabriel:
luyingjie (01-24-2012)
The Following User Says Thank You to Gabriel For This Useful Post:
luyingjie (01-24-2012)
Old 01-04-2012, 09:05 AM   #9
Senior Veteran
(female)
 
Join Date: May 2008
Location: Lake Worth, FLorida USA
Posts: 1,676
meg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB User
Re: Progression of Disease

I was always looking for answers as to when....When will this hapen or that. How much longer will this last...how much longer will she have to endure it all ... all we can do is wait it out and listen to the tales of others who have traveled these roads before us.

Mom died last July 29th but one year ago at this time my mom was walking and talking. By February we noticed a downturn with her ability to get herself up from a sitting position. She had her walker and once up, she could walk...it was the abiltiy to get up that she was forgetting. With our help she would get up and walk...but then within a short time.. a month or so, perhaps, even if we helped her up she forgot how to put the weight on her legs and was terrified of falling. So her ability to walk was lost within a few months time and she spent the last 4 months or so in a wheelchair.

Her speech also left her within a few months time...she always knew us and would acknowledge us with facial expressions or a few excited happy words when she saw one of us...expecially her grandchildren. She could talk...she just didn't. She was quiet, though always filled with expression. She knew what was happening around her...she just didn't say the words to express herself. She would speak in one or two words. One day, l walked in and she gasped an excited gasp and said..."Ohh, there's my daughter". What a gift that was for me!!

So, slowly her walking declined, then her speech and finally all movement on her own. Her final downturn went from February to late July. Sometimes it happens quickly, sometimes not. This disease has no rules...

But even if this happens with your mom you can still enjoy your time with her. I took my mom outside everyday and walked her around and sang songs...sometimes she would even sing a few of the words with me. I must say..odd as it sounds, I look back now and see that those were some of my mom's and my most special times together.

Love, Meg

 
The following user gives a hug of support to meg1230:
luyingjie (01-24-2012)
The Following User Says Thank You to meg1230 For This Useful Post:
luyingjie (01-24-2012)
Old 01-04-2012, 11:21 AM   #10
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,186
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Progression of Disease

It is always good to see you pop back in Meg

Just one comment on the music. I am not surprised at all that your Mom could sing lyrics. Music is unique in so many ways. It is one of the few things that involves every part of the brain. Lyrics sung is does not come from the same place in the brain as the spoken language. It is the music the triggers the lyrics and they come from a different place than most memories. That is why music therapy is so very important in cognitive impairment. If you look into the recover of Gabby Gifford... it was music that they used to begin her language learning process

I first encountered this phenomenon back in the mid 80's. There was a sweet lady who had Alzheimer's and was in the very end stages. She had not spoken in over year... not uttered a sound other than a moan. We took her to a "singalong". She seemed out of it that day. Yet when she heard the strains of "Amazing Grace" she quietly sang every word of every verse. I was amazed. She died within the week. That song which was so ingrained in her music memory was released that day. Since then I have seen it happen over and over.... including the Saturday morning music therapy sessions at mom's facility now So play those tunes that they loved best.

Love, deb

 
The following user gives a hug of support to Gabriel:
luyingjie (01-24-2012)
The Following User Says Thank You to Gabriel For This Useful Post:
luyingjie (01-24-2012)
Old 01-04-2012, 03:33 PM   #11
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: highland park, il 60035
Posts: 2,484
debbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB User
Re: Progression of Disease

its so hard. this disease just takes over when it wants. its horrible but please take of your self.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Progression of Disease bearcubs Alzheimer's Disease & Dementia 8 08-14-2011 07:56 PM
Aricept and dememtia progression pamkow2010 Alzheimer's Disease & Dementia 1 11-29-2010 11:12 AM
Is this a "normal progression of the disease"? BlueAtlas Alzheimer's Disease & Dementia 10 02-17-2010 05:28 AM
Faster Than Usual Progression of AD DannyTX Alzheimer's Disease & Dementia 10 06-30-2009 08:26 AM
Need a short Alzheimers Disease description WannaBeFreeToRoam Alzheimer's Disease & Dementia 7 10-08-2005 11:25 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:56 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!