DH with EOAD just need to share

Selena627

Hello all. I have some questions that I'm sure some of you might be able to advise. My DH was only 59 when diagnosed with EOAD in June of 2020. Symptoms for at least 3 years prior. In Oct. 2021 he had a bad seizure, hospitalized, came home a different person with violent behaviors. Meds have helped with that. Fast forward to present, I am still working a full-time job for a global tech company (thankful I can do it from home) and trying to take care of him. He has rapidly progressed, and over the last 7-8 months require 100% assistance with all basic needs. He cannot feed himself, bathe, dress, or use bathroom by himself, and walking is very short, gaited, hunched over. Won't hold his head up. He does not speak anymore, might get one word occasionally but if he does try to say something it's garbled, makes no sense. His eyes are glazed at times, distanced. He is 6 ft 1 and weighs about 230 lbs, but so far have been able to take care of him at home. Recently I'm noticing greater weakness and difficulty standing, including times that he just decides to sit in the middle of the hallway (of course I'm assisting him at all times walking but if he gets too far towards the floor, I have to just break the fall best I can and sit him on the floor). 

Now I'm trying to get the self pay hospital bed preauthorized in arrears to be able to submit some of those claims to my deductible. In August he became eligible for Medicare, and is on Part A  since I already had him on commercial insurance that also has prescription coverage. Now I'm waiting on the dr. order for a hospice evaluation - another week gone by and 2 falls today. How long does this typically take? I know I'm impatient but holding this man on my legs with my arms around him and trying to pull/drag to the toilet so i can dress him then he eventually falls - is getting me urgently concerned. Just need help that I believe this program can provide but not sure if he qualifies?

Also, does anyone know how Medicare typically processes with they are secondary to commercial insurance (federal regulations make it secondary since my employer employs over 100 people) and you haven't met your deductible with the commercial insurance? 

Any ideas or input as to what stage these type symptoms might be? I'm leaning towards stage 7 but appreciate anyone else's input or thinking. 

I pray for all caregivers of his horrible disease. There's no way to understand the full impact of this disease unless you live in it 24/7. Thank you and bless you all.

[Deleted User]

The user and all related content has been deleted.

Lynne D

My HWD worked for a state, and they were very proactive about getting him on Medicare Part B. Hospice came two days after I requested and evaluation, and began services immediately. I live in a rural area. Their responsiveness surprised and delighted me. Perhaps call another provider?

toolbeltexpert

Selena I would agree with where you think your dh is. Late stage 6 or 7. What you described checks all the boxes. Fyi you can call for hospice you shouldn't need a doctor for that. Others will confirm this.They will come and evaluatehim and they will supply all the stuff,beds hoyer lift incontinence supplies medicines and it wont cost you at all. Not sure if that is covered by part b however. I wouldn't wait call the nearest hospice they will get you set up.With Medicare our supplant insurance is secondary. But I got took the advice when dw became eligible and got a plan f,which isn't available anymore. So far it's covered everything, except NH.

Selena627

Thanks so much. We opted out of Part B (medical) and took Part A only which includes hospice care, home health, and hospital because I am working and have him under my insurance. They have a high deductible as do all the plans, so both plans do cover hospice. However, because my employer has over 100 employees, federal regulations say that Medicare has to be secondary. I didn't get the Part B also because it did not include prescription drugs and my plan does. 

Appreciate the tips and experiences! I also found out that hospice requires a Dr.'s order to even get the evaluation done. Working on that. I just hope that IF deductible with primary isn't met, that medicare would pick up and pay. Otherwise, it would be fairly useless.

Selena627

Here in SC, hospice is under Medicare Part A which is what we have. Thank you for sharing. Did find out that we do have to have a Dr.'s order for the evaluation to be done.

toolbeltexpert

Selena I didn't realize that, I will be praying for a quick evaluation.  

Stewart

Selena627

Thank you for your prayers, Stewart.

CStrope

Selena my DH was diagnosed 10/2020 with EOAD at age 66, symptoms had been evident for about 4 years prior.  I too continue to work full time from home, and still carry us both on my insurance. (I am 8 years younger)

I'm so surprised by how quickly your DH progressed.  My husband has definitely progressed, but no where near to the level you are at.  I'll be sending positive thoughts your way.

[Deleted User]

The user and all related content has been deleted.

Selena627

Dear Victoria, with his current status, it is very highly unlikely that he will survive to age 65. I was told that it would be a huge surprise if he makes it 2 years and that was 7-8 months ago. 

If I lost my job it would qualify for special enrollment for him, and as I understand it we could get Part B later as long as he was covered under a group health plan like my commercial insurance. 

I am grateful for your response!

Selena627

Believe I saw your post about your husband. I am deeply sorry. It's bad enough, but when you're in the tough position of having to continue to work a full time job, it's even more difficult to navigate. My prayers are with you!

Chammer

Hospice usually has a staffed physician who should be able to write the order for hospice evaluation.  Have you spoken to the hospice of your choice about this?

elainechem

From your description, your husband is in stage 7. It is time for hospice. My husband also had EOAD. After two years on SSDI, he was automatically put on Medicare. When two different doctors recommended hospice, I called his PCP. The PCP made the referral and a hospice nurse came out the next morning to evaluate him. He was immediately approved and they brought out a hospital bed and tons of supplies that same day. I'm sure that even private insurance pays for hospice. I'm so sorry that you're at this point. It is a very painful disease to watch.