Just starting this journey

beachbum

Newbie to this site. I started noticing DH memory slips about 6-7 yrs ago , attributed it to stress. Then starting questioning cognitive slips for about 3-4 yrs with it beginning to get worse. We finally got a diagnosis from PET scan showing consistent with Alzheimer’s. He is 57 in great physical shape and I am 53. I would say a young 53 ( at least at the moment). Because of his age, our neurologist sent us to U of F ( we are in Florida) for second opinion, which just confirmed. We have a neuropsych evaluation in June. Even though I knew this was probably the case, he has been so good at compensating and masking that I didn’t even realize the depths until I saw them administer the test. This is horrible at any age , but I feel we were in our prime. Both children in college and now I don’t know what lies ahead ( well I do but not to the extent). I’m trying to be realistic and plan. I am the primary breadwinner, his has mainly gone towards retirement. Fortunately he switched jobs 6 yrs ago and has a low key “ retirement type” job, at least for now. Anyone else caring for spouse with EOAD? I have so many emotions and frustrations and I don’t want to bombard my close friends by being that person always with the drama, plus they won’t truly understand. Any advice welcome

M1

welcome to the forum. He should apply for SSDI right away, and take short term leave then long term disability. You don’t want him to lose any benefits by being fired for cause. He will become eligible for Medicare once he is approved for SSDI.

Additionally, you should talk to a certified elder law attorney right away to be sure you have medical and legal power of attorney, and know how to qualify him for Medicaid in the future should it be needed to cover institutional care. Look at nelf.org. Memory care can run $10,000 per month if paid for privately.

Early onset disease tends to be aggressive and to progress faster than later onset, so you need to be prepared. So sorry you and your children are facing this at such a young age. But there are many here in the same boat, this forum can help you feel less alone. Read a lot of threads and you will learn a lot.

sandwichone123

There are several younger folks on here. My dh moved to memory care right at his 61st birthday, after some years of silent and then obvious decline. Make sure to get a DPOA that is not "springing" because some providers refuse to certify the need particularly in younger men.

It is a blessing for all that the kids are already mostly out of the house, because dementia can be very hard on kids day to day.

concerned_sister

Welcome beachbum, but sorry to hear of the diagnosis. We're still in the early days of this for my brother. We had a family meeting last October where I was asked to help my brother set up appointments and get a diagnosis. My brother's wife has english as a second language, so they lean on me a lot to help with communications, and to help straighten out their finances as things happened before his deficits were understood. By early Feb we had a diagnosis of dementia. This was followed by an MRI and EEG. The MRI showed deterioration suggestive of ALZ. He's a veteran, so we got him in to the VA health care system. We have orders for blood tests and a PET Scan written by the private neurologist, though we'll see if these can be filled at lest cost through the VA.

This board has been wonderul for helping me with the learning curve of how to best help my brother. A sad task you'll need to prioritize is getting him off the road as a driver. (A) Even if he seems to still have the skills, his cognitive impairment will not allow him to react quickly enough in a hazardous situation with potentially fatal consequences, (B) with his diagnosis on record, if he were in an accident he could get sued and lose everything that your family has worked so hard for.

I'm sure others will be along with other tips for newbies.

beachbum

Thank you so much for advice. We had a trust drawn up with estate lawyer some time ago , but I am calling to try and get in with CELA to have everything looked over and tweaked if necessary. Can he collect SSDI if he is still working. I ask because although his job isn’t a lot of money it does give him purpose. There are no benefits ( aside from small contribution into retirement) and it is right by our house. I feel when he no longer works the decline will escalate. He does not have any short or long term disability from employment. Should I start the SSDI process while he is still employed, I’ve read it takes a long time.
Our youngest transferred to a college closer to home and our oldest is doing his last semester online and coming home, even though still has his apartment lease. When we got the official, I told them I see people die everyday ( I’m medical field) that do not know it’s coming, we know the clock is running out and need to make the most of it. They are adjusting, but obviously some days harder than others. We have discussed trying in home care when the time comes. Will I know when he can’t be left alone and has anyone else had in home care? It is not feasible for me to quit work to be full time caregiver. My children will help as much as possible, but I do not expect or want them here helping full time.
Again, thank you for advice /comments. As much as I hate this for anyone, it’s comforting knowing I’m not alone

MelissaNH

((( Hello there ))) My husband is 56 and newly diagnosed. I just turned 52 a few weeks ago. Things have been wrong for a very long time at home, but since 2020 he has not able to keep a job. He was a high level executive. SSDI can be very confusing and frustrating to navigate. The stories and the advice I have received from all different places have been inconsistent and my experience with SS has been awful. They are understaffed right now. I hesitate to share my experience because, like I said, I have heard all kinds of stories and while some have had no issues, I have had a horrific time. I live in the land of speculation so what I believe is that because they are so understaffed, the training and qualifications of customer service are poor at this time. Here in NH (and again, this is just my experience), you can no longer walk into the office or call on the phone and get immediate help with the application process. They are like the appointment schedulers only. I waited for just over an hour in person just to be told I needed an appointment and that that was all they could do for me. I also believe they gave me inaccurate information regarding wait time for my husband's condition (I am referring to the Compassionate List which is suppose to expedite the process). On the phone I waited for well over an hour on hold to be told the same thing. These people are like the "gatekeepers" and the ones I have spoken to can't seem to answer even the simplest questions and would not clearly explain the application process to me. The earliest appointment I could get was ten days out. Our appointment is this Friday. I am not sure if you can get social security and continue to work at all. From what I've experienced thus far, it does not look like that is an option and I totally understand your feelings about your husband being able to continue to work in order to slow the progression. In our situation, I highly doubt mine could because his judgement is so impaired and his executive functioning is declining rapidly. Memory is not his main symptom as he has Frontotemporal Dementia (FTD) and anosognosia (no insight into his condition). This is a total freaking nightmare. He was the only breadwinner as I have been home since our 23 year old was born. This disease has completely destroyed our finances and everyday I wake up wondering what the heck happened to our beautiful life? Was it ever really beautiful? Being married to someone who has FTD has done a lot of damage to me psychologically and it's hard to imagine entering these last few stages with my mental health in tact. I apologize if I sound really grim right now, but the last few weeks have been terribly overwhelming. This was the first community I found online and everyone here has been incredibly supportive and helpful. I have since found several other sources of support as well. They are out there, but not always the easiest to find. If you ever want to chat, please feel free to send me a DM. Sending lots of hugs and support your way.

mpang123

I have SSDI. To my understanding, you can still work up to part time and still be on disability. But I don't know if it will affect your eligibility when first applying.

upstateAnn

I suggest you call either Congressman Pappas or Congresswoman Kuster officebdependng who reps you. Make an appointment with a staffer to discuss your issues. They can be very helpful with constituent service.

SSHarkey

Get to the lawyer ASAP. Make sure all your ducks are in a row. As for him continuing to work, M1 is spot on. Early onset is fast, and his abilities can slip quickly. Please consider early retirement and then maybe volunteer work. And yes, he needs to stop driving. I’m so sorry this has come into your family’s lives. Your sons web a part of it. Yes, they will need space. And so will you. Work as a team. Be open with them.

kimeche

Hello. I'm just writing to say that you are not alone. My 55-year-old husband was officially diagnosed with Early Onset Alzheimer's just a couple of months ago, but like you, I saw signs of it starting 6 or so years ago. He had been laid off from his job as an attorney, and had been laid off for several jobs before that, and now I understand better why. I wish we had figured it out while he was working because we would have had access to corporate disability insurance, but we didn't so why look back?! Unfortunately, his income was half of our total income, and that is a big loss. He is really struggling with what to do with himself during the day, so I understand your desire to keep your husband busy and working. I can tell that not having a purpose is taking a toll on him. Because he wasn't working, I filed for SSDI and was pretty quickly approved. I don't think you can work at all on disability though. I have a daughter who just graduated from college and also a 9th grader, so that is really hard. This is all really hard in general. I struggle with the nevers and the forevers of it all, but mostly try to stay in the moment and wish for slow progression. Wishing the same for you.