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Is the Final Stage the same for Early Onset as the same as Late Onset
Chad1978
Posted: Saturday, December 29, 2018 6:25 PM
Joined: 3/14/2016
Posts: 2


My mother is 65 and physically perfectly healthy...  Can walk, can eat/chew, talks, doesn't get sick.....  

However, she can't care for herself at all.  Unable to do basic functions like bath, change clothes, turn on a tv, and will wander if we don't keep doors locked, etc.  We used to be able to somewhat distinguish what she was saying, but now, NOTHING that she says even remotely makes sense.  

In our minds, she's in very bad shape, but what throws us off is she's physically "fine" since she's still relatively young.  

So our question is, even though her physical state seems to be okay right now, in the very near future is that going to get in line with her mental state and she be unable to walk, talk, and eat?  Like most, we have limited financial resources and have been trying to keep her in the house as long as possible, but it's becoming a complete drain.  

She was adopted, so we had no idea this was coming down the pike for us or what to expect, and since it's early onset, we don't know if the end is the same or not....


jfkoc
Posted: Saturday, December 29, 2018 6:46 PM
Joined: 12/4/2011
Posts: 17715


There is a lot of information re this online but I will give you my answer which will be that PWD usually die from a physical illness.

You will likely get more responses to your questions posting on the Caregivers board.


Mimi S.
Posted: Saturday, December 29, 2018 8:43 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world Chad. I'm so glad you found us.

And posting on the caregiver's site is a good ideas. It sounds as though your mom has been on this journey a while.

I think I remember that folks do die from dementia itself and not necessarily another disease.
Canada111
Posted: Sunday, December 30, 2018 10:07 AM
Joined: 8/22/2016
Posts: 263


Chad1978, 

I am your mothers age and have this horrible disease, Alzheimer’s. Diagnosed twice at top New York City teaching hospitals with FDG Pet CT and Spect scan. Neurologists concur this is pattern of Alzheimer’s. In almost 4 years since noticeable onset it has gone fast. Dressing, food preparation - instrumental activities of daily living affected first. In last 6 months walking and now talking affected (aphasia).Nonsensical speach and babbling now sometime but I try to be aware to not do this. Hard to get out of bed and walk downstairs. Need more assistance from caregiver husband. He prepared all meals but can feed myself and wash dishes. 

The order of how symptoms present and change has to do with the individual and how the brain is affected. Dysexecutive dysfunction indicates now I have much frontal lobe damage, yet I can write, use tv remote control and can go on Zoom chats with Dementia Mentors cafe and Dementia Alliance International (socialization for people with dementia -Google this). This will help her. 

You received 2 different responses from jfcoc and Mimi S. That is because each person with the disease is different and progresses differently. The brain controls all bodily functions and death from Alzheimer’s alone happens. One spouse on the forum wrote that spouse died of this with younger onset in his sixties after 3 years. Another after 18 months. Read Spouse forum and see that spouses like wife of Crushed (who was a NIH doctor and brilliant) lost most functions and memory in 7 years and is now in stage 7 and a year in nursing memory care facility. Another (Brenda around same age) of avatar Mike & Brenda is taken care of at home and can’t walk, incontinent, and has home hospice over 2 years. She’s like this 11 years after the start of the disease. 

What I’m saying is that each person is different and speed of decline to death is individual. With comorbid illness the end is usually faster but not always. There is no formula for how it goes. Some progress faster and in younger onset this is usually the case. Pat Summit the great basketball coach was diagnosed at age 59 and dead at age 64. Seems to me that the average is 5-7 years with younger onset. 

Horrible disease. More tragic than cancer. Cognition robbed at different rate in each person. Some have more physical symptoms earlier, some more memory decline. Depends on brain. For sure younger onset goes faster. Care is the factor as to how long the person lasts. You do not specify when it started and when she was diagnosed. 

Read my blog which I started in June 2017, and you will learn a lot. Many many changes since then. Still pushing to retain communication and language. Blog is called Suddenly Mad: My Voyage Through Early Alzheimer’s www.suddenlymad.com 

You can be in contact through the blog by replying there if you wish. 

Canada111

 


Horse Lover
Posted: Tuesday, January 1, 2019 12:31 AM
Joined: 11/4/2017
Posts: 124


Chad, my mother had EOAD.  My sister is currently in a nursing home with EOAD.  I also have EOAD.  I have to say that the end stage is pretty much the same for everyone.  For my mother and sister, they were both very healthy physically.  It seemed that their physical health contributed to living with the disease much longer than most would expect.  My sister has forgotten how to walk and can barely sit up in a recliner.  She has lasted much longer than I could have ever imagined.  She has been in a nursing home almost 10 years.  My brother in law had to place her there when she began wandering off at night.  I am early stage and my sister is late stage. 

Something to keep in mind, even if your mother had not been adopted, it is unlikely that you would have had even the slightest idea that this disease was coming her way.  People who are genetically predisposed to Alzheimer's make up a very small percentage of the Alzheimer's population.  I believe it is roughly 5%.  With my family history, my doctor expected that my diagnosis would result in a genetic predisposition.  However, it isn't genetic.  It's just a fluke that several people in my family (aunt's and uncles as well) have developed the disease.  I believe there may be more to it than that, but currently there is no proof. 

I'm sorry that you and your mother are going through all of this.  It is difficult to watch.  It's even more difficult to be the patient.  I hope this helps you in some way.  Keep in mind that at some point, you will likely have to place your mother in a nursing home for her own safety (especially if she is wandering off).

 

 

 

 

 


Horse Lover
Posted: Tuesday, January 1, 2019 12:37 AM
Joined: 11/4/2017
Posts: 124


Chad, another thing that you may want to do is make an appointment with a social worker through the Alzheimer's Association.  He/She can sit down with you and your family and answer your questions much better than most of us can.  They can also give you guidance on how to handle financial issues, wandering and anything else that you are unsure about.  Also, my social worker told me that Medicare will cover a portion of in home care.  My husband and I met with the social worker from my local association and she was able to answer questions that we hadn't even thought about yet.  You can get the phone number off of the Alzheimer's Association web page.
MN Chickadee
Posted: Monday, January 7, 2019 3:06 PM
Joined: 9/7/2014
Posts: 934


My mom was diagnosed with Alz when she was about 60 after a few years of noticing memory loss. 8 years later is when she started to need 24/7 supervision, started forgetting how to use the tv and phone, risk of wandering.  It is now 14 years later and still physically quite physically healthy. She speaks incoherently, can't dress or bathe herself, doesn't recognize her children, and is much like caring for a toddler. Yet her body remains very mobile and healthy. She could walk for miles. Her immune system is incredible from working with little kids in her career.  Her decline has been slow, much slower than some PWD. I do wonder when the final stage will set in as well. Sometimes I wonder if she will have a health event like cancer or stroke that we don't treat per her health care directive wishes and that takes her before Alz. We're working on the assumption that there could be quite a few more years left of care because as of now her body shows no signs of slowing down. If I were you I would meet with an elder law attorney and make sure you are ready for years more of care just in case. The attorney can tell you how to best use her money and prepare to get her on Medicaid if necessary.