Overwhelmed

DWofDH

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

((HUGS))

trottingalong

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

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

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

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

Thank you. Hugs to you as well.

DWofDH

Thank you. Prayers to you as well.

DWofDH

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

Thank you.

SDianeL

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

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

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

Thank you. Hugs to you as well.

Chammer

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

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.

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DWofDH

thank you.

DWofDH

…no pressure, no stress, no reason to worry when your husband's boss looks at your LinkedIn profile, right??? Especially after filing for ADA accommodation…..

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Russinator

((HUGS))

DWofDH

https://alzconnected.org/discussion/comment/236978#Comment_236978

Thank you. Yes, I agree.

a04723

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

When my husband was diagnosed at the age of 59, we immediately went to the lawyer and got our wills, POAs and Health Care Directives. Keep in mind there is a healthcare POA and a Financial POA - be sure to get both. We also filed for disability right away and he was approved almost immediately with no issues. My husband and I also discussed while he still could make decisions on when the right time would be to put him in MC - we decided it was when he could no longer go to the bathroom on his own. That time came over the summer of 2024 - he was not happy about and still isn't today but I know that the level of care he currently needs is not something that I can do. This disease is absolutely heartbreaking for everyone involved. Good luck to you.

Bridge4

a04723, curious about how many years went and what stage you would estimate your husband to have been when you first agreed on conditions for MC, versus what stage he had progressed to by 2024. My DW has at times agreed to the benefits to both of us if she went to MC in late stages, but as she has progressed I sense an increasing resistance to the idea of not being in her own home. Thanks for sharing.

dayn2nite2

Forget about the ADA accommodations and get him out on disability ASAP. Does he have short-term and long-term disability? Do the short-term first. If the employer is bad, they will end up firing him and he will lose all those benefits plus health insurance and whatever else assists your family.

My mom was on her way to being fired when the kind person she worked with went against the employer's instructions and called me to let me know she had been falling asleep at her desk and making questionable judgment calls in her work. I took her out the next day on short-term disability, that went into long-term and she was able to exhaust those benefits.

Certainly do the legal work - but the employer sounds like an acute problem.

DWofDH

https://alzconnected.org/discussion/comment/237640#Comment_237640

Thank you. We are working toward that today. Our issue is we have gone to three different providers and no one has availability to even complete the employer forms. Was her long term approved until SS retirement age?

a04723

https://alzconnected.org/discussion/comment/237634#Comment_237634

My DH and I talked about this soon after he was diagnosed. I asked him how much he would want me to do - he told me that once he couldn't wipe his own butt that it was time. I also knew that being his caretaker was becoming a 24x7 job and I was getting very little sleep and no time to take care of myself. As he started progressing - he too did not want to go anywhere, he would tell me he wasn't going anywhere he was staying in his own home. He still asks to come home all the time, although he is not quite sure where that is because he will ask my what my house looks like or where it is. Moving your LO is never easy and some adjust easily while others take some time. It took my husband 2 months to finally accept where he was and let the staff help him. I had to stay away for a bit so he could build up that trust with them. It also took time for me to adjust - I was used to being in control of his care and to let that go and just be his spouse was an adjustment. I try to visit him 2-3 times a week and the rest of the days are for me to get my errands done and to just relax. I know he is well cared for and safe - which is what I wanted for him.