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what to expect for first year after being Diagnosed
Grandpa Brian
Posted: Monday, December 16, 2019 1:35 PM
Joined: 12/10/2019
Posts: 39


Turned 55 in Sept and was told I had Early Onset Alz. I am currently working, but had to give up my own business.  I know just a couple people with early onset and they no longer can work. EOA seems to go fast.

 

Brian


Jo C.
Posted: Monday, December 16, 2019 2:19 PM
Joined: 12/9/2011
Posts: 11354


Hello Brian and a very warm welcome to you.   Each person is so different that it is not always easy  to project what things will be like, but I am sure that you will soon get some good input from other Members as they come along.

First and foremost, it would be best to see an Elder Law Attorney to get important advice as to how to best situate yourself for both now and in the future.  This specialty is important as they have far more expertise on such dynamcs and can get your paperwork in order for you and best advise you.

The Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.   There are no fees for this service and Consultants are highly educated Social Workers who specialize in the dementias and family dynamics. They are very good listeners, very supportive, have much information and can often assist us with our problem solving.

You may already be aware of this, but just in case you have not when you are no longer able to work  . . . . if one has Young Onset Dementia, there are Compassionate Allowance Disability Benefits "fast track" for getting approved for disability benefits.  This is important as income becomes affected.

Getting solid professional advice, having a dementia specialist as part of your ongoing team as well as having family, friends, etc. as part of your team will be helpful.  Some find support groups for persons with Young Onset, but those seem to be far and few between.  Having groups one attends including one's church or temple also helps in growing support systems.

You have a lot on your plate, I can imagine that must feel pretty overwhelming at times.   All the Forums on ths Message Board are very supportive and you can feel free to Post on any and all of them if you wish.  We are all here in support of one another and that now includes you too.

J.


Grandpa Brian
Posted: Monday, December 16, 2019 2:42 PM
Joined: 12/10/2019
Posts: 39


Thank you, I have read the Alz web site front to back and have followed a lot of its good advice. My real question is, how long should I work? I would like to take a few little trips with my young adult children. if I only have 6 or 7 months before I am majorly effected. I don't want to waste my time working.
Jo C.
Posted: Monday, December 16, 2019 4:56 PM
Joined: 12/9/2011
Posts: 11354


Your dementia specialist should be able to openly discuss this with you since he/she will know you and your clinical condition well.   Sometimes though, a physician will not "get" it and we have to kind of push at it to get the discussion going that one needs.

I can well understand your wish to travel with your children, they must be very special.

If you are married, it would also be good to thoroughly discuss this with your wife if you have not yet done so to be sure her concerns and goals are in line with yours and that she sees your financial situation and future the same way.  Sometimes a spouse has different concerns and thoughts and can be helpful.

If you are comfortable with it, sometimes it is good to have a wife or other Loved One (LO) or someone you are close to that you trust to attend your appointments with you.  They often hear things clearly that can be forgotten by the patient in the fuss that one is facing.  It can sometimes even be a bit overwhelming.

Also, seeing that Elder Law Attorney and perhaps a fee only financial consultant will give you a better idea on how long you need to continue to work while you are able and how your finances will address your future needs.

J.

 


looking4relief
Posted: Monday, December 16, 2019 7:07 PM
Joined: 11/27/2019
Posts: 56


Maybe it's good to spend more time with your children while you have the capacity. I don't know about your work. Maybe you could work less, take breaks, or stop to do those things you want and then go back to some kind of work if you have the capacity. I think it may be easier to keep a routine than having a new one in your situation however.
Grandpa Brian
Posted: Tuesday, December 17, 2019 7:44 AM
Joined: 12/10/2019
Posts: 39


Thanks every one!
Jo C.
Posted: Tuesday, December 17, 2019 2:20 PM
Joined: 12/9/2011
Posts: 11354


You are welcome Grandpa Brian, we are happy to have you join us and happy to meet you.

J.


JamesSonDad
Posted: Tuesday, December 17, 2019 6:24 PM
Joined: 4/29/2019
Posts: 27


I'll add my experience as the father of a daughter who was diagnosed with mild cognitive impairment while she was working at the age of 51 and raising three teenage boys by herself. It progressed over the next year. At that age her neurologist ordered a neurological/psychological exam. The doctor suggested she consider retiring from her job as a special education teacher and she said she was ready. She was diagnosed with Younger Onset Alzheimers (YOA) at the age of 53. After the doctor told her she had declined significantly in the last 18  months she should make plans we all agreed she should move to Assisted Living and her ex-husband took care of the boys. The last meeting indicated she had stabilized over the last year at moderate to severe Alzheimer's. She's very active, goes outside to training, travels and is relieved of caring for her boys who visit often. She eats well, sleeps well, socializes well, gets regular meds, much lower stress than raising the boys, eats well and does physical exercise 4-5 days a week. I and her doctor believe those factors have significantly stabilize her.   

I've read the lifetime with YOA averages 8-10 years from diagnosis. The caring group I was in had four husbands who said their wives progressed slowly for about eight years and then declined rapidly. 

Just sharing my experience, Brian. Good luck. 


Grandpa Brian
Posted: Wednesday, December 18, 2019 9:30 AM
Joined: 12/10/2019
Posts: 39


Thanks, I am confused thou.  Did she retire at 51 or 53?
JamesSonDad
Posted: Wednesday, December 18, 2019 11:49 AM
Joined: 4/29/2019
Posts: 27


She retired on February 13, 2017. Her birthday is 12/12/65. She'd been struggling mightily well over a year with her dementia without having the diagnosis. Her work performance was deteriorating. Her kids school performances were collapsing badly and they were fighting with her at home while still supporting her. They didn't understand what was happening. She had colleagues and assistants in special education who were supporting her without understanding her problems. She received the mild cognitive diagnosis in early fall, 2016 and labored on until February with a second diagnosis and more comprehensive testing. She knew it was time with that diagnosis.
Grandpa Brian
Posted: Wednesday, December 18, 2019 12:55 PM
Joined: 12/10/2019
Posts: 39


thank you