Diagnosis restarts, conflicting medpro views, I'm burning out

AlekoW · June 5

I'm new here. I tried searching discussions & not much new—the uncertainty of everything is getting to me.

My Mate (DW) 61 was diagnosed with EO (gene, fam history, 6 months of testing with long delays between, PET scans etc) in early February '26 (after getting a neurologist back in August. They referred her to an one of the two official (?) university dementia Alzheimer's specialist clinics in our region. Thanks to insurance changes and tomfoolery delays, finally falling into MediCAL's institutional lethargy, we're in this endless loop of home-grown neurologists who seem to think EO as not a thing (throw some 10+ yr old medications at it and the "it's early, you have time, don't worry about it" song). One of the clinics was plodding through their repetition ("we do things more thoroughly here") and our COBRA ran out before we could get the final PET Scan they set up. Our county HP won't cover anything out of our county so the University clinic dropped us. MediCAL & our county demand we start all over. There are two neurologists on the "plan" and they are scheduling 4 months out. I'm gonna be bald soon. How does a husband/Mate manage self-care if he can't manage to stay in business or get jobs (no one seems to be hiring 59 yos, for anything)? How do ya deal with a health care system that doesn't seem to care unless someone is over 70 and in late stages?

I've been managing this constant barrage of administrative, healthcare, legal, issues, continuously cajoling people to do what must be done—that their systems don't function well enough to do so. Bills, loss of both of our incomes, my business having to be set aside. If our landlord finds out, we're on the street. Everyone around us at our age is just retiring and living off their retirement. We've blown through all of ours. It's stressful and deeply depressing—I feel the massive fool that has done so poorly in life we're in the suck and shouldn't be. Does anyone deal with being of a "less-resourced" caregiver? She says she wants to know what's happening but she can't actually deal with the stress. If you process through emotion rather than thinking, how do I keep that emotional processing out of her life?

I looked up some online (Zoom) and in-person support groups for caregivers, and some in-person groups for her. What I need to know: what things should I look for in an in-person/Zoom group? I feel like I've greatly overshared here; how to I ensure I don't info-dump?

Ed's mom · June 5

I live in Maine so I can't help you with Cali nightmares but I can relate to the exhaustion of endless phone calls, following up. I'm sorry you are burdened with looking for work at the same time. Retirement allows me to enjoy this craziness all day, often the problem for me.

This is the best place to vent and don't worry about being judged. I'm new here still but all I have felt is support and caring. Take care of yourself.

Victoriaredux · June 5

I hear you , seems like it's a never ending series of puzzles they make you solve only to say "SORRY you can't play this game." I've got a bunch of participation trophies coming for bureaucracies that never helped. They'll be delivered as soon as I complete 4 forms in triplicate.

Seems like you have three major issues : medical care, financial issues and getting a coping network to help you get the first two manageable .

The Alz Assoc has a helpline and you can talk to a social worker , they may need to call back but people have reported it is very helpful ;

"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."

Medical, not a Doctor , but after other causes are ruled out NPH, etc , unless you are going into a trial program sadly there is no cure . Some older meds may slow progression and some meds help with behavioral issues that may crop up but at some point you have to ask what do we expect from the testing. We did 3 NPH tests before deciding that wasn't it and now rely on a solid PCP and added specialists as needed for specific issues .

Financial, ask if MediCal can refer you to job opportunities . I think they require work or school now unless certain conditions ,if so perhaps they have leads. Try to find an elder law attorney that may see you for for a consult at a reasonable price to give you options, and most importantly draft the documents you'll need going forward -DPOA, HCA etc. Can you find work from options to fit in around care giving - calling for local realtors etc. Restart your business in a different way ?

Long term you may have to look at placement , the elder law atty can advise on that in California - how to structure to keep both of you going. At 59 you have a lot of years ahead of you.

Glad you found this board, many years of experience and a lot of caring folks here .

blacksparky · June 5

I am on a zoom call once a month on the third Wednesday. It is made up on only men with wife’s that have been diagnosed with EOAD. We talk through all our problems help each other with our feelings and frustrations.
Light Lounge

Our Light Lounge is designed for male caregiver partners & spouses of a person walking with younger-onset dementia.
This virtual space is designed to feel understood, share common stories, exchange resources and cure isolation.

Every 3rd Wednesday of the month from 7-8:30pm CT.

We bring light to families of younger-onset dementia

Lorenzo's House is a virtual, global community empowering the sons, daughters, children, and families affected by younger-onset dementia (YOD) through healing in community, advocating for dementia justice and educating for a YOD informed society.

AlekoW · June 5

https://alzconnected.org/discussion/comment/274133#Comment_274133

Do you guys have a link? I think that would be valuable indeed.

AlekoW · June 5

https://alzconnected.org/discussion/comment/274131#Comment_274131

I appreciate your suggestions. I'm going to follow up with a call to that helpline.

blacksparky · June 5

Send Patty an email letting her know your situation and ask her if she could include you in Lorenzo’s lighthouse.
Patti LaFleur, M. ED, CDP (she/her/hers)

Programs Lead
Lorenzo's Househttps://www.lorenzoshouse.org

Biggles · June 6

You can never overshare or info dump in this group. It’s one of the reasons why we are all here. It’s the place to vent, virtual scream, stamp your feet and have a good cry. I was truly nuts before I found this group. Hold on to your senses and hold on to your finances, I am a great believer in positive help but so far there is not much that can be done for alz or dementia. Take heart from this group read The Cavalry’s Not Coming on this site written by Bill and hold on tight to each other. With all my heart I wish you good luck.

Victoriaredux · June 6

https://alzconnected.org/discussion/71052/the-cavalry-is-not-coming-9-year-edition

Here's that link.

SDianeL · June 6

as Victoriaredux posted there is no cure. Doctors won’t help except to see if she qualifies for clinical trials. Those infusions have many serious side effects. At most they delay progression by a few months. There are some reports that they increase focus in some. I would focus on learning all you can about caregiving. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. This is the best place for info, support and to vent. We’ve all been there and understand. It helped me to make a list of things to do. Lock down all financial accounts and credit cards. Meet with an elder law attorney. They are familiar with MediCal and so much more. 💜

howhale · June 7

https://alzconnected.org/discussion/76217/diagnosis-restarts-conflicting-medpro-views-im-burning-out

Dump away here, we all have and still do. It is the one place I found where no one will ever berate you or ignore you or push back on your venting and dumping. The load carried by a caregiver of a LO with this horrible disease is too large to bear alone. Come often and vent and dump. The Zoom calls can be lifesaving for a caregiver. I suggest finding one with others who are caring for someone with any form of AD because they will understand the depths of your feelings first hand. No need to explain. I participate in a mixed gender group and a men only group and I recommend both. Having lost my DW last year to AD, the mixed gender group gives me a perspective on things I no longer have. The men only group is not AD specific but I find it does not matter there as we share the things that men often never address.

In regards to the forever process of testing and the pain of all the foolishness with so many doctors treating the patient as a research lab rat (yes, I harbor some really bad feelings because of my experience and I know there are many good doctors out there), I ask what for? Once it is determined that the LO has a form of AD, enough is enough. It cannot be cured, regardless, and treatments are minimal and the new treatments come with such frightening potential side effects, stop with all the testing, prodding, probing, scans, etc., etc. My LO has this form of AD, direct me to resources that can help me care for them for then next decade or more. I say this because this site and the wonderful people here were a lifesaver for me but I had to stumble upon it since no one bothered to tell me about it. Search Resources on here and you will find som eposting with Zoom groups, in person groups, etc.

AlekoW · July 2

UPDATE:

Thank you all for commenting and sharing stuff. I'm grateful to have found this spot.

I got her on YOAD virtual support group through Alz-org & myself into a caregiver/YOAD group. I'm looking into a second for me as well. The days are crazy schedule & brain/emotion-wise trying to pull things together and not lose everything. Now that we're in MediCAL's system I'm learning how to grind through the redtape. Mid-July she can see a neuro finally & we have some communication openings with UCLA's clinic to try to coordinate from both ends.

I'm still struggling with work; but "plans." SSDI apps in & atty hired. I'm noticing her memory & cognitive symptoms are worsening—she's got more ES than MCI now. It's discouraging trying to get people to see what I live with; they see this sweet "retired educator" (Not "retired!" Come on, man). So tired of the "oh that's just aging, we all forget things, blabbity blah. I slip into mountain mode: "Aw bless yer heart, this ain't that! Hear what I'm tellin'!"

Lately that impatience & frustration with people invalidating (terrifying to me when HC providers do it) has been spilling over into irritation with her when her increasing symptoms force me to slow down when I'm piled up with firefighting & deadlines & trying to land work. The last thing I want to do and it just comes out. I'm not behaving as compassionately as I was, and need to be—working harder on that. She doesn't need my issues (no matter what she says 😬). I'm noticing how much emotional lifting I've been doing to not feel so I don't crash on her.

Victoriaredux · July 3

I've found "invalidating" can come from a misguided attempt to comfort you or for them to not get into a listing of woes. Esp if they are general care- taking BP measurements etc.

Maybe try saying, "Thank you but I've found getting the unvarnished truth with any possible options presented for future care is comforting for me" if that HC person is at a level to know and provide it .

AlekoW · July 3

https://alzconnected.org/discussion/comment/276443#Comment_276443

I value your insight; it's a sound headspace from which to operate.
What derails my distress tolerance (and this sound operational headspace) is the disproportionate near-exclusive power those HCs exercise over my Mate, denying she needs treatment. It could be leftover mountain values on my part: my default reflex is to go-over-the-desk at those who threaten the health and safety of me & mine. That reflex is unactionable given a government-run system that absolutely has the power (and financial incentive) to harm by deprivation. I reasonably expect HC providers to solutionize at least as much as I do.
OTOH, I will bear the sound headspace in mind. Whatever it takes to get her into treatment.

Today she asked me why I wasn't home to take her to work—heartbreaking to reassure her she has the chance now to work on her health. Until she pushed on her confusion over why she isn't at work. An hour later, through the fog she experiences once a memory partially surfaces, she tearfully realized why there's no work, that she doesn't have her 38 year career any longer. THAT breaks me. Every. Time. My brokenness then fuels the anger demanding the system change to give her a chance rather than let her go untreated and progressing into full early stage YOA. In 11 days, I need to be in a sound, patient, magnanimous, unremittingly persuasive space to bring new HC providers into the team and not let her down.

Diagnosis restarts, conflicting medpro views, I'm burning out

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