Overwhelmed

DWofDH · February 20

New to this discussion and hopeful for some assistance/direction, words of wisdom….my husband was recently diagnosed with EOAD, with lvppa variant. Went to 3 neurologists. Told he is in mild stage. Scored 19, 20 on MOCA. Had a silent stroke but don't know when….cognitive and some immediate memory issues prompted PCP visit in '23. Now I don't think he can work any longer (professional). He is struggling and gets major anxiety (employer has been awful). Our youngest is 14. I'm extremely concerned about every.single.thing. I have worked from home p/t as a consultant since my daughter was born. Been applying to jobs and getting rejections daily. Live out of state from my family. Have one adult daughter within 20 minutes of us. Not one doctor has reviewed any scans with us. Just told he has this, after ATN profile and PET scans done. I would appreciate any and all feedback - good bad and ugly. Details on "stages" would be helpful. I presume since he has progressive variant his life expectancy will not be "long", but I understand that can vary. I need to prepare as best I can, for me and our children. This is devastating.

Russinator · February 20

((HUGS))

trottingalong · February 20

I would suggest a POA if you haven’t done it yet. Also you should have him file for disability. There are others on here that know far more about that than I do. You can use the search button to find the best way to do that considering he is still working.

KathyF1 · February 21

I remember feeling the same way in the beginning. It’s such a shock and all the unknowns are so scary. As time went on I planned as wisely as I could, prayed a lot, and truly took one day at a time. I ended up selling our dream farm and moved close to my family. This is working for now but if he has to go to a memory care facility there is not a suitable one close by. So in that case will I move again? I don’t know. I’ll cross that bridge later. I’m so much more relaxed than I was years ago. I’ve taken up watercolor to occupy my time at home and have a goal to reach. We still have our horses and that is my passion. All this to say, try not to panic. Yes get legal docs in order and try to plan for the help and support you’ll need. But one day at a time. This forum is great for support and help. Sending prayers!!

Vitruvius · February 21

As for stages, you should start here, on the alz site, it’s under GROUPS, New Caregiver Help:

https://alzconnected.org/discussion/68020/staging-tools#latest

Note that most staging info is about staging of Alzheimer's, other types of dementia vary somewhat, particularly in the early stages. For my DW with Semantic Dementia (svPPA also variant of FTD) the later stages (6&7) were nonetheless right on. (She is now in Stage 7f, the vary last, so I have seen it all).

I like the Fisher Scale document as it is more narrative, it is used by my DW’s hospice agency. The Tam Cummings document is often cited here and is more of a succinct list of characteristics, also very helpful.

The Fisher Scale narrative is also available here:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fwww.alzinfo.org%2Funderstand-alzheimers%2Fclinical-stages-of-alzheimers%2F

Also agree about getting all your paperwork done now while your DH can still sign documents.

DWofDH · February 21

https://alzconnected.org/discussion/comment/236805#Comment_236805

Thank you. Hugs to you as well.

DWofDH · February 21

Thank you. Prayers to you as well.

DWofDH · February 21

https://alzconnected.org/discussion/comment/236819#Comment_236819

Thank you.

SDianeL · February 21

welcome. So sorry for your husband’s diagnosis. As others have suggested, meet with an attorney now and have documents drawn up. DPOA, HiPPA, medical POA and wills. I would advise your husband to quit work before he gets fired. Apply for SSDI. They have compassionate allowance. There may be a waiting period. Once he gets SSDI he will get Medicare. Ask how long that takes. Talk to an Elder care attorney about financial options. If he’s driving he should stop. Once he’s diagnosed if he were to be involved in an accident even if it’s not his fault you could be sued and lose everything. Read the book “The 36 Hour day” which really helped me after my husbands diagnosis. Also the videos by Tam Cummings are excellent. Google them. Keep track of his behaviors but don’t show it to him. I sent the behavior list to all doctors monthly at first then as each new behavior surfaced. The neurologist changed his diagnosis based on the list. I’m not sure the aphasia variant shortens the lifespan since there are so many factors. That’s why doctors don’t like to discuss stages. Each person progresses differently. Take one day at a time,and make memories. Hugs. Here’s something I found online about the variants: https://houstonmedicalclerkship.com/wp-content/uploads/2021/11/EOAD-new.pdf

DWofDH · February 21

https://alzconnected.org/discussion/comment/236805#Comment_236805

https://alzconnected.org/discussion/comment/236849#Comment_236849

Thank you. Hugs to you as well.

Chammer · February 21

CORRECTED: nelf.org for a list of elder care attorneys near you. Even if your DH isn't elderly, a cela is best prepared to help you in these types of legal matters for disability, etc.

Crkddy · February 21

I am so sorry and send my best wishes for you. My DW was diagnosed with Early Onset at age 55. She is now age 62 and in stage 7. It has been a long and ever-changing journey. She is still at home but I am in the process of placing her in a Memory Care facility before she loses her ability to walk. As others have recommended, please take care of legal matters immediately while your DH can still sign documents. My DW lost the ability to sign her name within 6 months of diagnosis. Be patient, don't press, don't argue. You cannot reason with dementia. You may not need it at this point, but seek out support, particularly help with caregiving. I have been fortunate to have a couple of very good private pay CNA's helping me at least one day a week that allows me to get out, run errands, and just have time to myself. Caregiving is a difficult and lonely mission……but rewarding still. Rely on his doctors for meds to address the inevitable agitation. Apply for Social Security Disability. With his doctors' documentation, he will qualify and should be approved quickly. Don't know the current rules, but with my DW, she was automatically placed on Medicare after two years on disability. Be strong - every dementia case is somewhat different. Some advice will work, and some won't. You have to find what works for you.

v3 · 3:36AM

Who wants lawyers ,right? But right now you do need to use every second to hold on to whatever benefits he has and you are in a race with his company's HR that may be deep in trying to fire for cause.

Don't discuss with HR [or any friends at work] , take his benefits info - long term disability especially , whatever performance addressing letters he has and talk to a benefits /LTD disability lawyer. Yesterday.

Also, a social security lawyer to get that started- they take very little by law and will know what is needed. Even attorneys who have posted on this site have hired attorneys to guide their cases.

With you working and caring for a family you don't need to learn how to navigate tricky legal fields .

And see the elder law attorney to get the right documents to manage your affairs in the future, do estate planning , check for medicaid[ the long term care- not just low income].

The more benefits you can keep will help your future income and possibly get benefits for your minor child.

It's normal to try to want to carry on as you have for as long as you can - don't - grab the benefits . There are no do overs.

I'm really sorry you and your family are going through this. But you've found a place where you can ask anything.

And the Alz Assoc has no charge support :

"Get Help and Support, Day or Night

The Alzheimer’s Association is here all day, every day for people facing Alzheimer’s and other dementia through our free 24/7 Helpline (800.272.3900). Talk to a dementia expert now and get confidential emotional support, local resources, crisis assistance and information in over 200 languages. It's ok if you don't know where to start. Just give us a call and we'll guide you from there."

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