Early onset Alzheimer's

mlandis

Hello everyone. This is my first post and I am lost. My DW who is 53 y/o and has a masters degree lost 4 jobs in 3 years and now has issues remembering normal things. Her mother had early onset at 53 and past by 59. We had cognitive testing that showed a decline in memory and processing but don't see the neurologist till December. She can no longer work because she gets confused very easily. Looking for help because I feel alone in this nightmare. My main question right now is how do I get her on disability or do I have to wait for a formal diagnosis? I have her on my health insurance but that costs me $1k per month with a $6K deductible that is slowly going to eat our saving in the next year. Thank you for anyone who takes the time to read this and respond.

Dio

So sorry you have to be here. If your question is trying to get Social Security Disability Insurance, then yes, you'll need to have a doctor's diagnosis regardless of the ailment, but the disability needs to be substantiated. If your wife is diagnosed with Early Onset dementia, then the approval process will be expedited through Social Security's Compassionate Allowance program. And seek advice/counsel from a CELA, now, to get your finances in order and how to get aid down the road while securing some of your assets, plus having a DPOA is crucial if you don't have one already. Many of us have been where you are. While it's a scary place to be, we are here to help and support each other. Others with more experience may chime in. Good luck! Breathe.

M1

Welcome to the forum, though I am so sorry you are facing this. Yes, go ahead and make an appointment with a certified elder law attorney (CELA; look at nelf.org) who should be able to help you with the disability process as well as all other legal and financial planning for powers of attorney, wills, and if needed, eventually qualifying her for Medicaid for long-term care. December will be here before you know it, and you can have the paperwork ready to present to the neurologist. You may feel some better when these necessary steps are underway. This is also time to think about your bucket lists as a couple, things you want to do while there is still some potential for mutual interaction. You have come to a good place.

WIGO23

Others here have answers to your specific question. I just wanted to reach out and tell you I have been lurking here for months. I finally posted and I am starting to feel less alone. Kudos to you for reaching out for practical answers and support!

mlandis

Thank you to everyone for listening and responding. I filled out disability paper work friday and it has really hit home that this is happening. I just contacted an Elder Attorney and waiting a response. Has anyone had their loved one had a PET scan for diagnosis? Her neurocognitive testing showed mild decline in memory and processing but I am not sure that will get her a dx. She can't even complete a resume that she loved to do for people. She does not have the ability to see that her writing has really declined. I need to get the financial worries under control so I can focus on her but it seems like it is going to be a long road unless she gets a dx soon. What doesn't help is I personally have very little support since I do not speak to most of my family.

Thank you again for all your support and advice. Mark.

loveskitties

In preparation for the December visit, make a list of all the "signs" you are seeing that there is an issue. If her employment history points to cognitive issues, include that. The more information you give the doctor the better.

A PET scan is a test which can show abnormal brain function. It can also determine if there are other possible issues...such as stroke, tumor which can cause mental impairment. It is often used to "rule out" things and help determine which of the brain functions may be impacted.

mlandis

https://alzconnected.org/discussion/comment/187738#Comment_187738

Well I found out last night that our Neurology appt is November 8th not December 8th like she told me. I will be providing as much evidence as I can. I will be saying things she does not want to hear but the doctor needs to know what I am seeing. We planned to travel for Thanksgiving to her Aunts house and had many discussions about where we were going to stay and this week she ask me what I want to do for Thanksgiving. She is getting sad and knows what is happening. She keeps saying that she knows she doesn't know, it is when she doesn't know she doesn't know is the problem. My day to day is slowly changing and it is hard to know what to expect anymore.

M1

Mark: one thing that may help is to put a lot of your observations in writing for the neurologist, and give them to the office when you check in. You can alert them that your wife may be upset by the discussion- they will have dealt with this before, and a heads up from you may be able to alleviate some of her discomfort. You can also ask to speak to the neurologist in private; can't hurt to ask.

Hope it's helpful and do keep us posted.

mlandis

https://alzconnected.org/discussion/comment/187849#Comment_187849

The Neurologist just gave us the Dx of memory issues and processing issues and told me she needed to go to the memory center which isn't for 6 months. I informed her that we are looking at this as Early Onset Alzheimer' until it is not. She ordered a 24 hour EEG to see of some her her episodes are focal seizure, ordered genetic testing and a lumbar puncture for amyloid. If both show evidence we will then get a PET scan. I could not believe the neurologist did not want to do further testing. She is willing and ok to talk about what she is having. She is no longer in denial and keeps telling me this is not what I signed up for. I said well when we got married I did sign for sickness and in health. She laugh at that. She is actually taking it better all the time. She knows what is happening and she keeps saying "I hate my brain" every time she forgets or does something. Calling for the testing appts today so now it is wait and see.

maidie

Mlandis, I am so sorry for your situation. My husband was dx at age 49, but lots of weird behavior before that. He passed at 55 in 2003. I documented everything and kept a binder that had insurance, doctors, SS and anything that I needed to know and remember. I took it to all appts. We went to an elder attorney and got our will in order. My husband was in good health and a walker. One night he walked 20 miles, and another time 8. He was arrested once, and had to go to trial, but he also got a job at Safeway. He did not keep it long. Early Onset is what we called it then, and my saving grace was a forum such as this. In 2017 my new partner who is 12 years older than me was diagnosed with MCI, and so I'm on the journey again. He now has dx of Late Onset ALZ. The saying, once you have seen one ALZ patient, you have seen one ALZ patient is true. But you will find all kinds of good advice and support on these pages.

This is my first post on this forum as I am looking for the support as well. All the best to you and your wife.

JDancer

Mlandis-

I'm sorry you have to go through this, losing a loved one to dementia is extremely difficult.

As you become aware of your LO's deficits, life will change. It was a slow process for me. Initially, I blamed many issues on what I thought was poor communication- hmm, I thought I told you that..., etc. As dementia revealed itself, I took over all household responsibilities as well as caring for my DH. It's a difficult role, but this forum can be a huge help.

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Cathymt21

I am pretty much in the same boat! My husband was just diagnosed! He is turning 66, but I am. 11 years younger than him. However, I myself, am disabled! I am legally blind and have TBI and a bladder disease and lots of other issues! I am a strong person and worked in the medical field all my life, including being a Dementia Director…but that was nearly 30 years ago! So much has changed! So I am also new here!

Honestly, I am getting scared because I feel like I am heading toward a fine line of not knowing exactly what to say to him…especially about his illness. I have a gut feeling that he won’t live too long and I did a calculation and it came up 3-5 years left! It’s about what I expected. I’m not surprised. I’m seeing the decline and my gut is usually right! It just breaks my heart because our youngest is only 22, and a nurse, living at home!

Im leaving on a trip tomorrow, but when I get back, we plan to go to an attorney to set up a trust, power of attorney, etc! My plate is full, but I know we will get through with Gods will! And all of you kind people!

ARgirl

https://alzconnected.org/discussion/66940/early-onset-alzheimers

My husband was diagnosed with early onset at age 59. His first symptoms impacted him significantly at work too. Passed away this year at 70.

Familial Early Onset Alzheimers falls under the "compassionate" diagnoses for Social Security Disability. Please go ahead and apply, but you will need a diagnosis. She will automatically qualify with a confirmed diagnosis of early onset disease. My husbands SS disability moved quite quickly. Be sure you have an elder law attorney to assist as well. Ours was invaluable at structuring wills, POA, etc.

My heart goes out to you as you embark on this path. It is not easy and can certainly financially, emotionally and physically wipe you out. I would also check to see if she has any short or long term disability from any of her previous employers. Between those two income sources, we stayed afloat. Again, my journey ended, but I still feel such compassion for those of you entering the nightmare. My heart goes out to you.