Says he doesn’t have Alzheimer’s

Flowers456 · September 13

Background: My DH is 56 and was diagnosed with Early Onset Alzheimer’s after an MRI, Neuropsychological Evaluation, and CT PET Scan. The doctor told him he has Alzheimer’s, and he and I talk about it every once in a while. He has been out of work for nearly a year because he accepted an Early Retirement Severance Package from a mass layoff at his company. He has told me just about every day that he will apply for jobs. He’s applied for one job, but that didn’t go well because he misremembered things the HR person said, and she noticed. I continue to work, and we pull from his severance package to cover the rest. He was the major breadwinner of the family while I worked part-time and cared for our kids (one with special needs).

Yesterday, I mentioned for probably the third time that he could apply for SSDI so that we didn’t have to just deplete his severance package and do something smart with the remainder of the funds. He asked why would he get SSDI, and I told him because he has Alzheimer’s. He got mad and said he didn’t. He said he’s seen people with Alzheimer’s, and he doesn’t have it. He said doctors only diagnose things so that they can prescribe drugs. He also asked why we were using his severance package. I didn’t want to argue, so I just left the room.

I am so depressed and scared. How does he think we’re paying the bills? Is he going to be mad at me once I tell him his severance package is depleted? (I have been documenting every little detail in a spreadsheet.) Will he ever get a job and be able to keep it? I feel like I’m carrying the weight of the world on my shoulders.

PS: I had mentioned in another post that he hasn’t told his mother about his diagnosis. And now I have a better idea as to why. She is also very “anti-pharma,” so he probably knows she would doubt his diagnosis too.

Timmyd · September 13

I am not an expert so please do not rely upon what I say. I have been navigating SSDI under somewhat similar circumstances for DW. Be sure you have clear medical documentation of condition as it relates to his disability. Having medical evidence supporting "date of disability" is very important with SSDI. Having an ALZ diagnosis and being considered disabled by SSDI are not exactly the same thing.

SSDI does provide 12 months back pay, so you are not necessarily penalized financially by delaying your application.

With DW, I described the process as her being eligible for early social security. I tried to avoid the words disability or ALZ. She was far enough along when I did the application that I was able to get away with this.

I would suggest you get a consultation from an attorney's office specializing in SSDI. I would think they may have some advice on how to navigate your circumstances.

The most important thing is establishing medical records that can be used in support of "date of disability". With that in place, you will be eligible for back 12 months pay so that you are not penalized by delaying your application while you figure out how to proceed.

Because of its gradually progressive nature (no specific date of disability) and patients unable to acknowledge their disease (lack of cooperation from the applicant), SSDI is not really well set up to handle EO ALZ patients. This is why you may want the help of a professional to navigate your circumstances.

Flowers456 · September 13

https://alzconnected.org/discussion/comment/253437#Comment_253437

Thank you so much for your insight.

I will use the phrase "early social security" from now on. That does sound better.

Thank you, also, for the information about the "date of disability." That information helped lift a bit of weight off my shoulders.

Timmyd · September 13

Another thing. If you do not have an online social security account set up, you should consider setting up an account online for DH where you control the email and password. This will make things so much easier as it will allow you to navigate the SSDI process with minimal involvement from DH.

https://www.ssa.gov/myaccount/

SSA does not honor power of attorney. Being able to manage the application on his behalf through his online account will make things much easier. The goal should be to submit and manage the application with minimal involvement from DH who is unwilling to acknowledge his disability. His name will need to be on the bank account where the payments are made so it will be good to have a joint account available for this.

I do not advocate you do anything illegal. It may be possible to do the entire SSDI application process online without ever needing a physical signature from DH.

sandwichone123 · September 13

I did exactly what Timmyd suggests, working on dh's Social Security account while he was around, because it's perfectly legal to "help" with their social security account. I applied him for disability while he was still "looking for a job," because I knew there was no way he would be able to manage all the steps of becoming employed. He cannot manage applying for disability either—that's why he needs it.

He will not be able to understand the details of finance and budgeting—you just have to take it all over and take care of it, providing him with whatever story will keep him calm and happy.

Make sure to seek legal advice very promptly. No matter how much it costs, it is so much cheaper than not having it. You need a plan, and you need a durable Power of Attorney, healthcare Power of Attorney, and advance directive. If you wait too long or do not get these, you will not be able to transact any business on his behalf, including cashing tax refunds or similar or care for his healthcare needs.

SDianeL · September 13

So sorry you are going through this. Although the doctor told your husband he has Alzheimer’s he may not remember it. Or he probably has Anosognosia which is a neurological condition that prevents people from recognizing or acknowledging their mental health or neurological deficits. The term comes from Greek and means "to not know a disease". People with anosognosia are unaware of their illness or the extent of it. Many dementia patients have this and are incapable of realizing they have Alzheimer’s. I would stop trying to discuss it with him. It will only make him more anxious and agitated. Time to take control and do what is necessary for both of you. Sadly your husband has a progressive disease. He will never be able to work again. He should not be applying for jobs. The book “The 36 Hour Day” explains the disease and provides tips on caring for someone with dementia. That’s a good starting point. After getting DPOA, HIPPA forms etc with an Elder Care Attorney, SSDI is the next thing to get done. SS will fast track the claim for dementia under compassionate allowance. If you decide to use an attorney for SSDI, I would meet with or speak to the attorney at first without your husband. Explain your husband’s Anosognosia. If you can’t get the SSDI filed, the only other option is to petition for guardianship which is more costly.

Timmyd · September 13

Regarding getting legal affairs in order. I was able to frame this with DW as basic estate planning. Her ALZ diagnosis was never mentioned by myself or our attorney during the process. I spoke with the attorney up front outside the presence of DW about what the goal was. The attorney and I were both on the same page when it came time for all of us to meet and sign.

My advice would be to not connect the "estate planning" with his diagnosis. Do your best to make estate planning seem completely unrelated to his health and find an attorney who you trust can help you with that approach. I did wait until about 6 months after diagnosis to get this going. It is important to not wait too long as DH needs some degree of awareness about what he is signing in order for the attorney and notary to participate.

I am not sure exactly how much awareness DW has had of her condition throughout this journey. I do know for certain, that trying to have a discussion with her about ALZ was never helpful and only seemed to make things harder for both of us. I have always behaved as if she has ALZ without either of us ever mentioning the word or talking about it.

blacksparky · September 14

I agree with all the prior comments. The only suggestion I have is to get it done sooner than later because unless they have changed the law, there is a two year wait from the start of SSDI before he can get Medicare.

JulietteBee · September 14

As an SSDI recipient for a life threatening disease myself, I would suggest that you go straight to hiring an SSDI lawyer.

Though my condition is listed in the SS blue book of automatically eligible conditions, I was denied twice, before finally hiring a lawyer.

All recipients have to prove 3 things. First, your condition has already rendered you unemployed for the past 12 months. Secondly, your disability will terminate in death. Lastly, there are NO jobs in the National Economy that the person can work.

I am a registered nurse, who used to teach nursing students. Due to my age at the time, the SSA said I could get a part-time job selling movie tickets or I could go back to school to learn a new trade.

I hired an attorney. He got me a hearing before a judge. He also deposed my doctors.

Prior to getting a lawyer, the SSA did not accept any of my documentation as proof of a disabling condition. Upon reviewing the same documentation, now adding sworn depositions, the judge did!

Again, do NOT waste time filing on your own. He is going to be denied. Based on what you have shared, he has only met 1 of 3 conditions. I met 3 of 3 and went without an income for 2.5 years while my case made it through the system & captured a judge's attention.

The lawyer gets paid ONLY when he is awarded SS benefits. There is no upfront cost for you to retain them. Just make sure the retained attorney specializes in disability cases.

All the best!

Lgb35 · September 14

I do not discuss finances with DH at this point. Look on the social security website. There is a compassionate allowance for several neurodegenerative diseases. Due to the progressive nature of the disease they know with specific diagnosis they will not get better or be able to hold a job. It is a “fast track”. It’s still going to take awhile but it is supposed to be faster and more straightforward. You do have to indicate you are asking for the compassionate allowance.

I have not filed under it yet since DH is still working. Good luck

howhale · September 14

Went through the denial of her condition with my dear wife after the initial diagnosis of MCI. Her denial became fierce and constant, eventually leading to paranoia that others knew it and thought she was "crazy". The anosognosia is very real and can make life even more difficult than it will be with just the disease. Get involved immediately, find a competent attorney to help, make all the changes necessary to allow you to manage ALL of the decisions needed. Do not delay and be prepared ASAP. You never know when this disease will advance, speed up and change. It can happen fast and unexpectedly. Your loved one cannot help and you will have to take control slowly and without making it apparent. It will be far easier to get things in order, and there are a lot of "things" to get in order, when the POA is in effect than later. One of the hardest things we have to do as the caregiver and person responsible for our loved one is to get prepared. I recall one meeting with the attorney discussing what needed to get done when I broke down at the conference table thinking about what I was doing. Being prepared is so important now because as the condition advances and moves toward the later stages, you will be less able emotionally to do all the work. It is a lot of work to get it all done properly.

l7pla1w2 · September 14

DW had a diagnosis of Alzheimer's in her medical record, about which she complained bitterly. She did acknowledge having some memory problems, so I told her that some doctors might use "Alzheimer's" as a short-hand for memory problems. That seemed to satisfy her.

Something similar happened when she needed a note to be excused from jury duty. Again, the note said "Alzheimer's". I pointed out to her that her memory problems would make it hard for her to be an effective juror, so she should accept whatever explanation gets her excused.

As DW's condition deteriorated, I gradually took over many of the things she used to do, especially paying bills. I simply asked her if she'd like me to take care of them, and she was willing.

Something no one has mentioned yet is driving. If you search this site, you will find many discussions about the challenge of getting your LO to stop driving. I was fortunate that DW started letting me do all the driving. She had always had a fear of getting lost, and she knew she would have problems, so she agreed to let me drive. For others, though, preventing a LO from driving becomes a major battle. The consequences of a PWD driving and getting into an accident are very serious. Insurance may very well not cover you/him since he has an Alzheimer's diagnosis, and it could be financially ruinous for you, not to mention the psychic trauma if someone got hurt.

Finally, this discussion group probably saved me sanity. Since DW didn't think she had a serious problem, there was no way for me to go to in-person or online support groups. I couldn't discuss her dementia over the phone with friends, lest DW overhear and get angry. But I could participate in this online group. Since I was an IT professional and always using my computer anyway, it wasn't suspicious to her, although she sometimes asked what I was doing, who I was talking to, and I had to fib.

Make good use of this site.

Michele P · September 15

https://alzconnected.org/discussion/74079/says-he-doesn-t-have-alzheimer-s

This is a difficult situation. I went through the SSDI process years ago. You absolutely should hire an attorney who specializes in SSDI cases. The attorney will walk you through the process and filling out the paperwork to apply. Documenting the disability with medical records is critical. It would also be beneficial to have a doctor state that your loved one is permanently disabled and can no longer work due to the diagnosis. Request a copy of the doctor’s notes after every medical appointment. They will require a physical and other examinations by their paid doctors. The process is long and exhausting. I was denied twice before I could go in front of a judge. At the end, you will win. Just don’t give up! You will receive retro pay from the time you apply to the decision date. You will have to pay taxes on this money the year you win the case. It could take up to six months for the check! Keep a log with dates of all doctor’s appointments, diagnostic tests, how the disease impacts every day life and function. You need to prove that holding down any job is impossible. Keep clear notes on issues with memory, focus, executive function.

Says he doesn’t have Alzheimer’s

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