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Newly diagnosed need to vent.
Greytmommy
Posted: Saturday, June 10, 2017 11:12 PM
Joined: 4/14/2017
Posts: 20


I'm 59 years old, after struggling with increased short term memory loss for over 2 years, And being put through more tests then I can remember, and being sent to primary physician, to therapist, to neurologist, and then neuro-psychologist, I have been given diagnosis of early onset dementia, and major neurocognitive disorder, and anxiety. But, when I ask what are we going to do about it, nobody wants to even attempt any medication. I'm not stupid, I know there's no cure for dementia, but, I've read the earlier  you start meds like namenda or aricept, the better the results.  I'm in this 2 years and over 20,000 dollars out of pocket (my deductible for health insurance is 8,000 dollars a year).  I'm still working full-time job (to keep health insurance and pay mortgage), but, I'm exhausted. I work 10 hour days and come right home to bed.  I am just curious if this is typical to get a diagnosis and to get medications to try to slow this process down?  My anxiety is so bad at night, I tend to pace for hours at night (it's like the worse panic and fear feeling I've ever had).  

I've been a social worker for 34 years, and even with my knowledge of resources, without help.  From doctors, it's tough.  I'm not wanting to go on disability, but, I'm scared I can't continue to work until 62 to retire. I don't see me lasting that long, as I've been struggling to keep up at my job for over a year. Eventually, I'm sure I'll be let go, due to inability to keep up. My short term memory is horrible.  

I'm requiring help to write checks ( numbers confuse me), I forget to take meds, I struggle to Cook more than 1 item at a time, and making decisions is difficult.  I lose my temper so quickly and say things I would never have said before.  I can't focus on reading or watching TV anymore. I work and come home and hate being in crowds as I struggle to filter out all the noise. I feel better alone at home. I don't even answer my phone at home as focusing on a conversation exhausts me.  I'm tired all the time, but notice when I have to concentrate for very long, it truly mentally exhausts my body. 

Someone please tell me how you've handled this.  I'm considering selling my house and move to a over 55 apartment complex (keeping up with a house alone is too much).  My family is making me feel so guilty for my illness.  It's apparently " inconvenient" for everyone (if they only understood how bad it is for me).  How do you finally say, enough is enough and start setting things up for yourself to survive regardless of disappointing others?  It's like others just expect me to continue at same pace and continue to take care of them, when in reality, I can barely take care of myself.  It's all so overwhelming, from begging for a diagnosis ( to know what you're fighting), to getting treatment, to letting go of everything you've worked for, to realizing you can't continue to take care of others the rest of your life, and to finally let go and 

And find a way to lessen your stress to have a decent quality of life until the end.  I've never felt so alone in my life.  Thanks for listening.  


BlueSkies
Posted: Sunday, June 11, 2017 12:08 AM
Joined: 2/24/2016
Posts: 1096


Graytmommy,  Sorry to hear of your diagnosis, but glad you found your way here.  Sounds like you need a lot of support from those who know what your going through.  Your at the right place and your no longer alone.  

I am about the same age as you and was diagnosed last year with dementia, probable FTD.  I too had to struggle and fight to get a diagnosis.  This seems to be the experience for many of us with early onset.  Apparently when you are young it takes so much longer to get the doctors to take us seriously.  Then of course comes all the endless testing.  It is exhausting.

I'm sorry you are not getting the support you need.  Sounds like family and friends my need to be educated on this disease.  It is hard for them to understand when they don't know what your dealing with.  Were you told if you have Alz or another dementia?  Either way most people have no clue what early dementia looks like, so educating is so important to get the support you need.  Also regardless of what others do, you need to start taking care of and supporting yourself.  At some point others will just have to learn to accept your new limitations.  I can no longer cook or drive and have a difficult time speaking.  I have learned to accept what I can't do and try to focus more on what I can do.  It's not always easy and I do have my bouts of anger, sadness, etc...   I don't beat myself up about it when it happens as it's a normal reaction, but I do try to get over them as soon as possible and move forward.

I hope I have helped you some and others will be along soon to help also.  Please hang in there.  There is a big adjustment period after getting such a diagnosis.  Be kind and gentle to yourself.  Things will get better as you adjust to your new way of life.  And yes, life is still good.  Just different.

Also check out all the helpful info on this site and call the 800 # anytime to get help when needed.

Take care and keep posting.

Lots of love,  BlueSkies

 


BillBRNC
Posted: Sunday, June 11, 2017 8:23 AM
Joined: 12/2/2015
Posts: 1018


GaryT, I'm 66 with Dementia with Lewy Bodies and early onset Alz. Things started for me about 6 or 7 years ago as short term memory problems and forgetfulness, then went downhill from there. I got a formal diagnosis about a year ago after much testing and Pet scan. Just some background so you won't feel alone. Anyway, I would suggest you go to a memory assessment clinic while you still have insurance. They have these at major medical centers. I had to drive about 2 hours to get to mine. Anyway, it would be helpful if you could get a specific diagnosis. Why? Because it will help you get SSD and Medicare as a part of SSD. With early onset Alz and I assume other dementias, SS Admin has special expedited rules for you to get early disability. Going on SSD will allow you to stay on SSD until you reach full retirement age at 66, which means you will get a higher SS payment at 65 than you would get at 62, which is very good for you. You can't work if you get SSD, so you need to time things to suite your needs, but I would do it before too much longer for sure. As for you house, if you live alone and it sounds like you do, I would consider selling your house if for no other reason than you too soon for liking won't be able to take care of the house by yourself. Personally, I don't think I would buy another house, because you won't know how long you can live in it alone, so I would opt for renting myself. If you have the resources, then you can move from a rental to a CCRC type setting down the road. Bottom line: get a good diagnosis from experts, get SSD and Medicare at a sooner than later time, then address your living situation. It also would be good to get some type of plan in place to take care of you in the event others won't take care of you. Powers of Attorney for medical and financial make good sense, same for Will and Estate issues. An Advance Directive is also smart so people will know your wishes for what to do as you get much worse. If you have pretty much any type of dementia, then it is progressive and will result in you becoming unable to care for yourself. There is no time line for this. It could happen over the coming year, or more likely over the next 5 years or so or more. Nobody knows, so getting yourself ship shape soon is the best advice. And don't pass up the SSD and Medicare as opposed to simply retiring early. There are laws and regulations at SS that make things easier for people with dementia. Good luck, and sorry you in this situation.

 

Oh, I should add that your symptoms are somewhat normal for early dementia, and they only will get worse over time. And the reaction of your family and friends is somewhat normal too. They can never understand. But it would be good if you could get someone close to you in the family to stand tall and agree to be there for you as your condition gets worse in the years to come. And yes, starting the medications sooner rather than later is a real good idea. It also isn't unusual for local doctors and doctors who don't specialize in dementia to decline to give you a more specific diagnosis. They just don't want to be the ones to tell you. I hate to sound blunt, but I have the same problems you have and a whole lot more, so I don't waste time with figuring out how to be softer. Everyone one here has gone through and is continuing to gone through what you are now. So you are at the right place.


BillBRNC
Posted: Sunday, June 11, 2017 9:12 AM
Joined: 12/2/2015
Posts: 1018


Oh, and also, the truth is that even the best experts won't be able to tell you for certain what type of dementia you have. The tests and scans only give them a good idea, so they will never say for certain. I was told that it would be impossible to know for sure what mixture of dementia I have until I'm dead and my brain is autopsied. This is unfortunately the truth. And the meds don't slow down the progress of the disease, but they do help to maintain the symptoms from progressing as fast, but the underlying disease process continues on but is masked somewhat by the medications. The medications make you think you aren't progressing, but you actually are progressing, so keep that in mind as you decide what you want to do. I think most of us here have opted to take the medications. I know they have helped me stay somewhat stable in symptoms. I would hate to think where I would be if I hadn't taken medications. But you never will actually know for sure. Again, good luck.
llee08032
Posted: Sunday, June 11, 2017 9:18 AM
Joined: 5/20/2014
Posts: 4408


Welcome to the board Greytmommy.

Sorry you have to be here! Although it has been sometime since you have known there were problems it sounds like diagnosis was recently confirmed? You must be spinning like a top from all you have been through. 

If you have benefit time at work you need to schedule some time off and focus on just you and reducing your stress. My family was initially supportive but they don't get it and they don't understand my need to keep my stress level at a minimum. I've had to put some distance between myself and some of my family members in order to take care of myself. 

Don't put pressure on yourself to figure everything out right now. You may want to hold off on making any major decisions and give yourself a little time to decompress from all this. Once you feel better ( you will feel better at some point) you may want to get legal advice about employment and assess your financial situation and entitlements. If you are a social worker in the non-profit sector you need to be even more careful in figuring out a plan that is financially feasible for you.

More advice from the experts and dementia pioneers is to come. Know that you are in the right place. Please do take the best of care and check in with us.




Mimi S.
Posted: Sunday, June 11, 2017 9:19 AM
Joined: 11/29/2011
Posts: 7027


Welcome to our world Greytmommy,

We're so glad you found us. I'm so sorry for what you are going through.

Do you have a copy of your neuro-psych report? Read the diagnostic part of it carefully. Possibly copy and post that part here or have someone else read it with you.

I am wondering if they found more than one type of dementia? Specifically some FTD.  That would explain "I lose my temper so quickly and say things I would never have said before. "


This behavior might be an indicator of FTD. With FTD the typical AD meds are counter-indicated.  I'm not an MD nor a pharmacist so I don't know what research there is in how to medicate when both are present. 


Do get involved in Best Practices. Many of us with the disease have found that this does slow down the progression of the disease.


I'd also call our help line: 1-800-272-3900 and ask to speak to a Care Consultant. 


BEST PRACTICES

There are other things you can do to help slow down the course of this disease, including:

(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:

Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you. 

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress.

(And take meds as directed.)



grandmalynda
Posted: Sunday, June 11, 2017 12:56 PM
Joined: 12/3/2016
Posts: 374


Greytmommy, you will soon be able to breathe at least a small sigh of relief since you have found this group.  You will receive much support and gain valuable information that will help you to survive what you are now going through.  Dealing with an unsupportive family is extremely difficult and frustrating.  I have also been dealing with that situation for almost 2 years.  I have now learned to focus on my wants and needs. I no longer dwell on the lack of support.  It drains me of too much energy.  I have recently started counseling and am starting to make my way through this maze.  Together we can all look to each other for support and understanding.  So glad that you found your way here.  Please keep reading and posting as much as you wish to.

--Lynda


alz+
Posted: Monday, June 12, 2017 3:21 AM
Joined: 9/12/2013
Posts: 3608


greytmommy -

goals:

lower anxiety

easy to live in place

sleep

know that people who are unhelpful can be let go from your life. the few who remain, or who you meet in future, will only be good for you and them. 

****

your health insurance fears are outrageous to me as I am sure they are to you. let others battle for a functional national healthcare system.

finding a doctor who will help you may take many tries.

I wrote a post to you and it was dissolved - have been having internet and computer issues so have not been posting as much.

*****

anxiety issues are normal and for me were #1 on my list of things to correct before I could endure all the other stuff to come. so far all the changes I made in my life were difficult, and really worth it.

you deserve a chance to try the meds avail and alternatives and you now have friends who will help you figure out your way through this.

I reinvented my life and relationships. I decided I wanted to enjoy the end of my life and I focus on that. 

hope this time my post goes thru.

love and courage


Iris L.
Posted: Monday, June 12, 2017 1:09 PM
Joined: 12/15/2011
Posts: 18509


Welcome greytmommy.  You deserve a trial of medication.  Medication has helped me a great deal.  Look for a neurologist who regularly treats PWDs (persons with dementia).  You might call the Helpline (1-800-272-3900) and ask for a Care Consultant to help you locate a dementia specialist near you.  


It is most important to work on anxiety.  Alan in Colorado, one of our emeritus members, who was himself a psychologist, use to warn us that stress and anxiety will reduce our cognition by HALF!  This was a wake up call to me, because I had great anxiety.  It is important to search for and utilize whatever stress reduction techniques work for you.  I used the techniques of deep breathing, muscle relaxation, and journaling.  I also sought support from my cyber-family on this board.  Everything helps.


Please keep reading and keep posting.  We are all here to help each other and to help you.


Iris L.


Greytmommy
Posted: Wednesday, June 14, 2017 10:20 PM
Joined: 4/14/2017
Posts: 20


Thank you so much for all the info.  I've made notes from your info on SSD and Medicare. 

I've had all my power of attorney, living will, and all those legal things Completed.  I've looked at several apartments for 55 and over adults and have decided to move there once my house is sold.  My diagnosis from one neurologist  is early onset dementia with major cognitive impairment. The neurocognitive psychologist report arrived today  (who completed weeks of testing), diagnosed me with major neurocognutive disorder due to early onset dementia. 

Holding down a full time job is getting more difficult each day, so, now that I have received the reports with diagnosis, I'm going to look at starting SSD process.  I'm sure I won't be driving much longer (at this time, I'm limited to in town driving). 

As I'm making these decisions ( to place home for sale, where to move, preparing for disability), im feeling a little less anxious as I feel I'm getting more prepared to simplify life. 

Thank you so much again for the info and suggestions.  


Greytmommy
Posted: Wednesday, June 14, 2017 10:22 PM
Joined: 4/14/2017
Posts: 20


Blue skies, thanks for your support, and reaching out. I need this support group more than anything right now.  Nice to meet you, my new friend.
Greytmommy
Posted: Wednesday, June 14, 2017 10:27 PM
Joined: 4/14/2017
Posts: 20


Thanks for reaffirming this regarding diagnosis for what type of dementia.  So far, all my 3 doctors said the same thing, that there's no way to diagnosis what type of dementia someone has until after death with  autopsy.
Greytmommy
Posted: Wednesday, June 14, 2017 10:36 PM
Joined: 4/14/2017
Posts: 20


I think we our living the same nightmare lol....I've been distancing myself from a couple family members who are not supportive ( they are use to me being the one to take care of everyone and don't accept the role of me no longer able to be the caregiver). So, I've found some peace just by removing them from my inner circle.  Honestly, at this point, it's about survival, coping Day to day, and spending valuable time with my sons.  

Whirlwind is a good term for what I'm feeling  

I've known in my gut something wasn't right for a few years. But actual diagnosis within last several months to confirm.  

Thank you for the welcome to the group I'm sure none of us would like to be a member of. But, since this is our journey, I'm finding great people here to learn from. 


Greytmommy
Posted: Wednesday, June 14, 2017 10:39 PM
Joined: 4/14/2017
Posts: 20


Thank you for all the inf
Greytmommy
Posted: Wednesday, June 14, 2017 10:49 PM
Joined: 4/14/2017
Posts: 20


Lynda, 

Thank you so much for reaching out to me.  I'm already finding this group of people so kind, understanding, and supportive (things I'm not receiving from my family). I'm learning so much information it's amazing.  Although, I have to read little at a time as I can't focus or remember new info well.  Like you, at this point, I'm learning to focus on my own needs.  I too, have started counseling to work things out. My counselor is writing down 1 thing for me to accomplish every week (she helped me get my legal affairs in order such as getting a power of attorney, a living will, and so on).  The next week she gave me 2 weeks to go out and visit some local apartments to move to after selling my home.  She's pointed out things to look for in a new living situation such as moving where transportation will be easy, pharmacies close, close to my doctors and stores.  My counselor is great, she thinks of things I would never think about and she knows I have limited focus and memory so she breaks tasks down that are obtainable.

Thanks again, I look forward to chatting more. 

 


Greytmommy
Posted: Wednesday, June 14, 2017 10:57 PM
Joined: 4/14/2017
Posts: 20


Your post was exactly what I needed to hear tonight.  Removing unhealthy people from my life has been a priority for me.  I'm struggling with anxiety but just started trying essential oils and a diffuser with lavender at bedtime and surprisingly it's helping me sleep.  

I do hope one of my doctors will decide to let me try one of the meds to at least try to see if it can slow the memory loss down. Like you, I just want to enjoy the end of my life and to live it in peace with the best quality of life I can have.  

Thank you SO much for reaching out to me.  May we both find the peace that we seek. 

 


Greytmommy
Posted: Wednesday, June 14, 2017 10:59 PM
Joined: 4/14/2017
Posts: 20


Thank you so much for reaching out. I greatly appreciate the info.
llee08032
Posted: Thursday, June 15, 2017 5:59 AM
Joined: 5/20/2014
Posts: 4408


Greytmommy,

You are fortunate to have a good counselor helping you sort things out through this maze.

Simplifying our lives is exactly whats called for and I'm happy to hear you are well on your way. There seems to be so much to learn but you are already addressing major areas such as reducing stress, clearing things from your plate wherever you can, distancing yourself from toxic relationships and simplifying your life. 

Does he or she (your counselor) specialize in working with persons with dementia? 


Greytmommy
Posted: Thursday, June 15, 2017 11:24 PM
Joined: 4/14/2017
Posts: 20


My counselor is a female and close to my age. She's been great to help me through figuring this maze out. She said with me being single, and no family support, she knew it was going to be overwhelming to do all of this preparation by myself.  So, while I'm still the one making the decisions and feeling in control, she sets up 1 goal a week to address another issue.  It's made it much easier.  I look back and am surprised how much I've accomplished like all the legal work, looking at places to move, downsizing my home and so on.  I suggested she start this as a specialty of hers (helping us with this diagnosis to learn how to simplify life and manage our affairs).  She said no thanks  

 


TheSteven
Posted: Friday, June 16, 2017 4:26 PM
Joined: 10/11/2014
Posts: 167


Welcome Greytmommy,

You've gotten some great advice. One more thing you can check on is look inside your mouth for any dark dental fillings. If you have them it may be the root of your problems. Those amalgam fillings contain 50 percent mercury and constantly release mercury into the body. After losing my job I was diagnosed with Younger Onset Alzheimer's. About a year after that, after much research, I had my mercury dental fillings removed. My conditions improved and now my DX is mild cognitive impairment.

If you have these fillings, see http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com


BadMoonRising
Posted: Friday, June 16, 2017 9:38 PM
Joined: 4/22/2017
Posts: 335


Re: SSDIB. There are several ways by which you could qualify but the "Compassionate Allowance" list is the fastest. However, note that dementia or major neuropsychological disorder alone will not qualify for the Compassionate Allowance. You would need a more specific diagnosis such as Early Onset Alzheimer's, or LBD, or FTD, etc. Also note that the Agency prefers their adjudicators to use an eval from a PCP, Neurologist or Psychiatrist. (If your neurologist is willing to add "probably due to Alzheimer's", that should be sufficient.)

https://www.ssa.gov/compassionateallowances/conditions.htm

There is another way to obtain the SSDIB fairly quickly but the preparation is a bit more time consuming. If need be, I'll address that a little bit later.

Because my posts have led to some misunderstanding, it's pretty obvious to me that I'm not writing in a way that is easily understood by some forum members. That said, here's my educational and professional background: R.N., some doctoral courses in cognitive psychology, including neuropsych testing, and I am a member of my state's Bar. (There was a time, not too long ago, that I worked at ODAR. Google is your friend.) Obviously my communication skills have considerably weakened so my "legal" work is much more limited. Anyway, if you have any questions, ask away. I may be able to help.

ETA: If and/or when you earn less than $1,170/month, you are not engaging in SGA i.e., not working. Something to think about.


Greytmommy
Posted: Saturday, June 17, 2017 12:17 AM
Joined: 4/14/2017
Posts: 20


Thank you so much.  Making my way thru the social security maze is the scariest.  I've been reading and making lots of notes.  I'm seeing my neurologist again in august and will be speaking to him at that time (he is wanting me to stop working due to the dementia and the toll my job is taking on me). I work 10 hour days as a BSW ( social worker) and I have to focus so hard, my brain is truly exhausted within a couple hours at office. I'm truly going Day by day with my job and I know if I don't leave, I will be let go before long because I can't keep up with my workload (I use to see 7-8 clients a day and now I struggle to see 2 daily).  I'm just scared to death to quit before getting approved for disability because I'm single and I need income to pay mortgage and I need health insurance.  But, reality is, my body and mind are going to make this decision for me, very soon due to exhaustion.  I've had my job for 34 years and was trying to make it to 35 years so I could officially retire, but, I know I can't go another year. 

Thanks for the info about social security. Someone suggested I hire a lawyer to help me file for SS disability, but the 3 lawyers I called all wanted 5000.00 dollars retainer which is insane. Hopefully, I can receive the disability without too much difficulty.  Wouldn't take a brain surgeon to see I have memory and language issues ( if they spent 2 hours with me they would see it). 


BillBRNC
Posted: Saturday, June 17, 2017 7:41 AM
Joined: 12/2/2015
Posts: 1018


Greyt, I'm no expert of SSD, but I think you can't win a disability claim so long as you are still working. The two are basically inconsistent. The fact you are working will be used to prove that you are able to work. Most SSD lawyers won't even take a SSD claim unless the person has stopped working first. I hope I'm wrong about this, but I fear that you might have a problem in keeping a uninterrupted income stream while you move from one to the other. Also, I thought SSD lawyers aren't permitted to take money from you, as their fee is paid by SSD Admin out of your initial benefits. Again, I could be wrong, but hopefully someone who know for certain will jump in with better information than my basic understanding. Good luck. Bill.
Iris L.
Posted: Saturday, June 17, 2017 2:53 PM
Joined: 12/15/2011
Posts: 18509


Your thought processes are compromised.  Please think about discussing your plans with a trusted person before going ahead.  Bill is correct, it is illegal for a lawyer to charge upfront for representation for SSDI.  How are you choosing your legal representation?  Are you working with disability attorneys?


If you work with your local chapter's Early Onset Coordinator, you may receive some advice about Compassionate Allowance and your application.


Work accommodations may help to some degree.  Here is a website that may have suggestions for you:

http://askjan.org/media/Alzheimers.html


If you cannot do your job, consider taking short term disability medical leave of absence, pending your application for long term disability.  Does your job offer LTD as an employee benefit?

 

You might also check your recent annual employee reviews, to see if there have been negative reports or warnings.  If so, this could help your case.

You have not begun medication yet. Medication, in conjunction  with other accommodations,  may improve your functioning on your job for another year.


I would not suggest that you sell your home to move to a 55 & up community right away, until you have figured out what you have to work with.  You might want to move to a comprehensive type of senior community that has independent living, assisted living, memory care and nursing home facilities all together.  Or you may not.  You need a plan.  It will depend upon how much money you have to work with.  


Also, you should think about moving close to a family member or close friend who will be a support person for you. If you don't have anyone like that, and I am in that category, you will have to rely on knowledgeable and competent professionals.  

The point is, you have time to make thoughtful decisions for yourself.  Don't make rash decisions.  Don't rely on the outside world for much help in decision-making because they just don't know what's at stake.  Rely on the members here and the Alzheimer's Association.  They know.


Iris L.

alz+
Posted: Saturday, June 17, 2017 7:07 PM
Joined: 9/12/2013
Posts: 3608


thank goodness for the social workers, nurses, lawyers, teachers and every other person on these boards..

Iris taught me about the relationship between anxiety and cognitive function. when anxiety is low, cognition goes up and vice versa.

As I still struggle in the little house I share with my husband I often think an apartment would be better. But we stay here because it is small, and it is easy  for me to go out and about on my own (I no longer drive).

When I sought disability (before I was diagnosed with ALZ) I used a lawyer and he got 30% of my back payments. I absolutely needed a lawyer, but I did not realize it would cut my social security payments in half (half of amount I would have gotten at 65).

Seems the pattern is get a diagnosis, try different meds, learn to cope with the condition, settle the finances as best possible, and then it is not so hard. I maybe wrong but once I got the hang of how my brain was acting it got much easier. Point being it is not necessarily one long fast slide into oblivion.

Imagine being ok, what that would looks like, and head for that.

Glad you are here, you are so young. sending you hugs and smiles.




BadMoonRising
Posted: Sunday, June 18, 2017 10:28 PM
Joined: 4/22/2017
Posts: 335


Quick note before I go to bed. I promise I'll address some of the other concerns tomorrow. Attorneys can, in fact, ask for a retainer that will be deposited in an escrow/trust account.

In general, attorneys have two choices in terms of attorney fees. The majority of Social Security attorneys will enter into a fee agreement with the claimant. If the terms of the agreement meet Social Security's requirements, it will automatically be approved by the adjudicator if the claimant is awarded benefits. Most attorneys choose this option because  the fee is withheld from the claimant's award of benefits and there is no need for them to jump through hoops to collect their fees. (Except for the idiots that either add improper language to the agreement or fail to include the required language.) That said, the attorneys pay an extra fee to SSA for this service because there will be no need to collect the fees directly from the client. Of course, if they lose the case, they lose the fee.

The second option is to submit a "fee petition" for SSAs approval, after the case has ended. That's a pain in the ... because the attorney must detail all of the work that was done on the case, hour by hour, etc. But sometimes, a fee petition is necessary.

**When it appears that the claimant will NOT be entitled to back owed benefits, the attorney is more likely to ask for a retainer upfront, to be placed in escrow, until the case is over and the petition has been submitted and approved. It is unlikely Greytmommy will be entitled to back owed benefits because her claim will be expedited under the compassionate allowance exception and, unfortunately, benefits are not payable for the initial five months of disability. This would explain the requests for a retainer. 

I'll post other less tedious information and suggestions tomorrow.

 


BadMoonRising
Posted: Monday, June 19, 2017 6:05 PM
Joined: 4/22/2017
Posts: 335


I thought I took notes a few days but cannot locate them. LOL

You mentioned that you have been with your employer for 34 years and that you had (originally) planned on staying until you had completed 35 years there. Are you eligible for a benefit upon completing 35 years that you would not receive if you left before then?

Regardless of where you work (public or private sector) or the duties of your job, I strongly encourage you to seek workplace accommodations for your disability. What is the worse that can happen? You get fired? Does termination eliminate any special benefits? Does your employer offer retirees health insurance?

You have a lot to think about. I know you are super stressed and want to leave your job now. But you also do not want to make a decision that you will eventually regret. Try to slow down a bit and let the good people on this forum help you through a difficult time.


Greytmommy
Posted: Monday, June 19, 2017 7:44 PM
Joined: 4/14/2017
Posts: 20


Thank you for supportive words. I'm trying to "learn how my new brain works" but, soon as I figure something out I honestly forget.  My memory is very bad. I write everything down these days, otherwise forget it.  Ironically I can tell you all about my life in the 60s and 70s but ask me what I ask yesterday and I couldn't tell you.