Younger Onset Alzheimer’s Disease Q & A Part 1

Sorry for the delay in answering emailed questions. I had several questions about the same issue so I will address the most common themes.

Social Security Benefits and Social Security Disability for good reason confuses a lot of people. Debra and I have had a huge learning curve once I left work and went on disability.  I had email comments such as, “you can receive social security, the Alzheimer’s website says so“, “you can get disability insurance and social security at the same time”, and “at least when you turn 65 you will be able to start getting social security to supplement the disability”. Also I had one individual who assumed that disability income was not taxable.

Unfortunately, all these premises are wrong. I will try to explain the events as we know them in our case. There are a lot acronyms used below, it is easy to confuse them.

First, the Alzheimer’s website explains that there is a “Compassionate Allowance Initiative” that is supposed to expedite the application process to receive SSDI (Social Security Disability). An important note here, this is NOT Social Security Benefits you receive when you reach retirement age, this is Disability.

I am still eligible for Social Security Benefits when I turn 65. The amount I will receive was “locked” when I left work on disability since I was no longer contributing to FICA (Federal Insurance Contributions Act).  Disability income will not reduce the eventual Social Security amount.

What we were told by the Social Security Administration and what you can be read on-line varies greatly. It can be confusing during a time of great stress with an Alzheimer’s diagnosis.

We were told by both private legal counsel and the SSA to utilize an organization called the Social Security Advocates For The Disabled (SSAD). They are independent of the SSA, and are not affiliated with any government entity. They worked as our advocate.  They filled in forms and took care of our needs as they came up.  Instead of doing this work ourselves we hired SSAD.  Their fee is 25% of the recovered disability amount owed or $6,000, which ever is lower.

That meant when I applied for SSDI, and it was approved, it would be retroactive to my initial disability date. Let’s say the disability date was in May of 2015 and SSDI was approved in October of 2015, I would get SSDI back to May of 2015 in a lump sum, minus the 25% for SSAD.  Utilizing SSAD is supposed to prevent mistakes that could cause your application to be denied, or could cause a back up for approval. The application process is extensive.

Your Social Security Statement will give you the information you need about receiving disability.  For example, Debra was a stay-at-home mother for many years and she would not be able to receive disability because she did not contribute to the system.

I hope that is clear, it is not an easy concept, it is much more difficult than it should be. If you need further clarification, send me a note.

You can’t get SSDI and SS at the same time. SSDI is intended for individuals who are disabled before they are at retirement age. My SSDI will convert to SS when I reach 65. You cannot apply for SSDI if you already receiving SS benefits.

Everyone regardless of their age should look at their SS benefit statement. You can setup up a SS account online at SSA.gov if don’t want to wait for the annual statement. People mistakenly depend on SS for their soul source of retirement funds.  Your SS benefits are dependent of what you have paid in over your employment history. My benefit is a little over $2,000 a month for SSDI and will be approximately the same when it converts to SS when I turn 65.  What you receive at retirement (65) is NOT a percentage of your last reported annual income. Not everyone is eligible for SS benefits at 65, this is dependent on your age. My retirement age is 65, Debra’s is 66.5. Some people can opt for early retirement at 62, again it is driven by your age. Your SS statement breaks it down for you. The other fallacy is that you can pay in as much as you want through payroll deduction. Social Security (FICA) is withheld at a specified rate. If your income hit’s $118,500 annually, no more FICA deductions are withheld for that year. SS is not a retirement plan.

Let’s switch now to Long Term Disability Insurance (LTDI). Not everyone has LTDI. In 2013, 69% of workers in the private sector did not have short term or long term disability. It is a mistake to assume that your employer automatically has a disability policy for it’s employees. I will give you an example that will scare you. Let’s say a 50 year old single individual is employed and is earning $48,000 a year. He is disabled and can no longer work. His monthly gross income is $4000 a month before he is disabled. Making some assumptions we can estimate that his monthly disability income will be no more than $1700 a month. Or about 42% of his take home pay before disability. Also we need to remember that once you are on disability, your employment ceases and you will need to pay for health insurance. If you opt for COBRA, will be paying 100% of the premium. I will talk about health insurance and COBRA in the next blog.

There is another potential issue that we ran into with our LTDI. After we were approved, we found out  there was a clause in the policy that requires you to file for SSDI. If the policy is employer paid insurance like mine, the employer is not required to give a copy of the actual policy, only a “brief policy description”. This doesn’t sound like a big deal until you realize that once the SSDI is approved, the Insurance company can then deduct that amount from your monthly long term disability insurance benefit amount.   Please check on your Long Term Disability Insurance Policy. The policy may or may not include short term disability insurance which would cover you in the event that you were off work for several weeks for a medical reason. Short term disability can, like in my case, be converted to long term disability.

The last clarification I will make is about taxable income. Just because you are disabled or retired, doesn’t mean you stop paying taxes. Disability income in the eyes of the IRS is still income.

I will end with the disclaimer that I am not a tax expert or a financial planner. What is in today’s blog is my opinion and the experiences Debra and I had with the process.

 

“Every Minute Counts” Mike’s Hughbanks Reaction

“Every Minute Counts” was aired on PBS nationally Wednesday January 25 at 9:00 PM Central time. Debra and I were asked to be part of a panel at a prescreening in Omaha. What follows is what I took away from the documentary, sorry, I am a list maker, so first you will see my list of the points that resounded with me, and then a summary of my thoughts at the end.

 1.       Alzheimer’s disease is the biggest epidemic we have in this country.

2.       5 Million Americans are living with the disease.

3.       Epic disease with a case every single minute in this country and every 4 seconds around the world.

4.       One of the top six things that are going to kill us.

5.       It will sink the health care economy and national economy unless something changes.

6.       The disease will take us (country) down.

7.       6th leading cause of death in the US.

8.       No effective treatments and no way to prevent it.

9.       Individuals with the genetic mutation are guaranteed to get Alzheimer’s, probably before age 60.

10.   It is estimated by 2050, 14 million will be living with the disease in our country if nothing changes with a cost equivalent to our defense budget of 1 trillion dollars.

11.   500,000 people living in Florida live with Alzheimer’s.

12.   Long-term care in an Alzheimer’s Unit can easily exceed $ 5,000 a month.

13.   Neither Medicare nor Private Health Insurance pays for long-term care in a facility.

14.   Alzheimer’s is the most expensive disease in America exceeding heart disease and cancer.

15.   Alzheimer’s will be the financial sinkhole of the 21st century.

16.   1 in 5 Medicare dollars right now go to someone with Alzheimer’s, it is projected this will soon be 1 in 3.

17.   “Granny-Dumping” is becoming prevalent. Caregivers need a break so they take their demented family member to the ER. It is classified as a “Social Admit” so Medicare does not pay.

18.   Medicaid is a federal program but is administered by each state. The wait in Florida for Medicaid to assist with long-term care can take up to 5 years. You are place on “The List”.

19.   New Hampshire’s median age is even higher than Florida, partially because the younger people s are exiting the state. Alzheimer’s is epidemic in New Hampshire. In 1996 the State of New Hampshire put a policy in place to stop the addition of nursing home beds with the intent of limiting the state’s Medicaid spending.

20.   Of the top 10 diseases, (how people die), Alzheimer’s is the only one where there are no survivors.

21.   Most people with Alzheimer’s are not able to lobby or even discuss their diagnosis due to the nature of the disease.

 

Some of the experts that were featured in the documentary;

Dr. Rudolph Tanzi, Harvard Medical School.

Mathew Baumgart, Alzheimer’s Association

Dr. Stephen J. Bartels, The Dartmouth Institute.

Senator Edward J. Markey

Dr. Beau Ances, Washington University School of Medicine.

My first reaction to the documentary was sadness for the real life examples of people living with the disease. Honestly, the facts and numbers were mostly known to me because I speak about Alzheimer’s and this information is out there already for the public to see. Debra posted her reaction previously and I will say it affected her very deeply. I can see now that when she sees people in the later stages of the disease as represented in the documentary, she superimposes my face on them knowing that this disease is a death sentence for me.

After time to process the documentary, I started to feel a little angry. It depicts people living with the disease in later stages. I felt it was not doing justice to those of us who have the disease in the Early Stage and it is progressing more slowly. I checked my email to find that others felt the same way. A high school classmate asked me if I required full time care or was in a nursing home yet, everyone with Alzheimer’s is supposed to be unable to care for him or herself.  I now realize that the purpose of the documentary was to make the public aware of how horrible this disease really is. They had to have something of a shock value to the program.

There are forms of dementia that are very aggressive.  I live in the minority because of my age, I am part of the 200,000 Americans diagnosed under the age of 65. I am also in the minority in that I am a white male. People of African and Hispanic descent are at higher risk as are women. Because I am an insured white male, I was diagnosed early. That is not always the case, which is a travesty. It really is a matter of social justice. I think of the groups that I speak to and am quickly realizing that well over 95% are white. Who is reaching the minority populations that are actually at greater risk? I have been speaking to predetermined groups, a lot of them are dementia support groups with very minimal attendance by minorities.  We can and need to do better. Every American deserves quality medical care and support.

Where do I go from here? I am using the documentary as a springboard. They made the comment in the program that most people with Alzheimer’s cannot speak for themselves. I feel the overwhelming responsibility to speak not only for myself, but also for those who cannot speak for themselves.

What can you do? Find out who your legislators are for your respective state and district, write them and call them. We need continued increases in funding if we really want to figure this disease out. Before I was diagnosed, I had no idea what the prognosis was for someone diagnosed with Alzheimer’s disease.

I think the documentary was very well done. It is available to view on line on PBS. Please recommend it to others, like it on Facebook, and any other form of social media you use. Thank you to PBS and Home Instead. I had the privilege of speaking at Home Instead Headquarters in Omaha last year. They are passionate about elder care. The founders of Home Instead, the Hogan’s have an amazing story, very classy people and a quality organization.  

In conclusion, I feel I need to break my summary down into two issues. The first is public awareness, which this documentary addresses very well. It needed the shock value and therefore I think it was very beneficial. Many Americans have no idea what Alzheimer’s disease is and how it affects families.

The second issue is those living in the Early Stage and the importance of early detection. I remember visiting with Dr. Petersen when he was in Omaha from Mayo last year when he made the point that we should be concerned about early detection. I did not see representation in this documentary about the probable majority of people with Alzheimer’s that are symptomatic, maybe undiagnosed, and do not yet require institutional care or in-home care. Where is the platform for this discussion? We have millions of Americans living with some form of dementia that are not in care centers nor do they require full time in home care.

At times, I feel I am the only one on my soapbox doing the talking. If we create a platform for mid-late stage care, shouldn’t we also have a platform for early detection and early stage? The public and the agencies, especially the Alzheimer’s Association have to realize that some of us with a diagnosis of Early Stage Alzheimer’s do have a voice and we do want to be heard.

My name is Mike Hughbanks, I have Alzheimer’s Disease, I do not live in a care center, I do not require in home care. I am 60 years old living with my loving wife writing a blog about my life with Early Stage Alzheimer’s disease. I represent millions of Americans under 65 and over 65 that are in the Early Stage of this disease. We have a voice and need to be heard! Let’s continue the conversation, this PBS program was a good start, but it is only a start.

Mamma Jo, A Personal Alzheimer’s Story

I have a personal story to relay to those who read my blog. It brings this blog full circle. Nadine lives in California and has been following my blog with her mom since its inception a year and half ago. I did not have a direct relationship with Nadine or her mom (Mamma Jo) other than a comment submitted after my first blog thanking me for telling my story.  I gave her my contact info via private email and thanked them for following the blog. I didn’t hear anything further until I received a phone call today.

I found out Nadine’s mother was diagnosed with Alzheimer’s in 2014.  Mamma Jo did not have health insurance. She was just an “unemployed poor black woman” (Nadine’s words). Mamma Jo was unable to work after 2009 due to confusion and memory issues. The family believes now that is was probably the early stages of undiagnosed Alzheimer’s . As her condition continued to decline, Nadine and her family were financially able to place their mom in a care center during the winter of 2015. Nadine printed my blogs and would take them to read to her mom in the care center, I was known as “Omaha Mike”. For some reason she remembered me and would often ask if I had written to her. Mamma Jo thought I was writing the blogs directly to her. Sometimes they would have to reread one of my posts and Mamma Jo would act like it was a new “letter”. For some reason something in her mind made her fixated on the blog.

 Nadine called me today to let me know her mom had passed at the age of 57 and to tell me thank you for giving her mom something to look forward to, she had kept my “letters”. I was in shock. If you have read my blogs, you would know that they are informational and talk about my journey with the disease. I have not dealt with loss associated with Alzheimer’s since my outreach began because I mostly talk to individuals in the early stages. I try and offer hope that there will be advances in drug trials that will slow the progression.

The family does not know if her Alzheimer’s was genetic, money was not available for genetic testing. The family also does not know if they carry the gene. I have overwhelming sadness in my heart as the family deals with arrangements for their mother. I wish there was good news for others who, along with me are diagnosed with the disease. I wish I had words of comfort.

We lost two acquaintances/friends through the blog in the last 36 hours. In both cases, the disease was left undiagnosed until late in the disease progression. I think those of us who are able to continue to raise awareness about this horrible disease should take this story to heart.

My heartfelt condolences go out to Mamma Jo’s family. Thank you for allowing me to post this to my blog. My hope is that others reading this with family members that are symptomatic, that are as yet undiagnosed, would seek medical attention to get a diagnosis.  

This poem by Emily Dickinson came to mind.

Not In Vain

If I can stop one heart from breaking, I shall not live in vain:
If I can ease one life the aching, Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

 Mamma Jo, your story will impact others.