New here. Not sure of anything anymore.

JNichols1952

I started noticing changes in DH a couple years ago. He just blew me off, chalked it up to age (71 at that time). Then came Covid. He's had it 4 times, twice hospitalized with Covid pneumonia. Developed long Covid a year ago. About that time, his cognition began to diminish slightly and now, he's just no longer the same person. His STM is shot. LTM is still quite good but not great. I've had him to his PCP numerous times asking for referrals but, until recently, he didn't let her see him the way I do. Immediately, she realized I'd been telling her the truth all this time. She referred him for brain MRI to rule out lesions and to a neurologist for MCI. Problem is, I can't get him in to see the neuro until November. Then, I'm sure it'll be another month for testing. So we probably won't have a dx until the end of the year. ANOTHER WHOLE YEAR BEFORE ANY POSSIBLE TREATMENT STARTS!!! Imagine my frustration. In the meantime, I'm exhausted! He sleeps most of every day in front of the drone of the TV. Fortunately, I have an art studio (aka spare bedroom) where I can go for some peace for a little while. But, here's my problem. I don't know how to best care for him AND myself. I don't know who to call and if I did, I don't even know what questions to ask when I got them on the phone! So much for my first post. Thanks for reading.

Vitruvius

This may not work for you but here's our story.

I knew something was wrong with DW and was having trouble getting DW assessed by someone who would become her regular neurologist as a new patient. So I contacted an Dementia Research Clinic that was associated with a major university teaching hospital. They only do assessments and do not take on permanent patients. But they remarkably were willing do perform an hours long assessment within two weeks. This included a professor of neurology and a professor of of neuropsychology, both accompanied by a post doctoral candidate. Having an actual diagnosis and a referral from the University helped get a permanent neurologist to accept DW as a patient much more quickly. This obviously doesn't work for everyone but might be worth a shot.

However I have to caution about expecting much from any treatment. There are cases where things that mimic dementia can be cured and that's the first thing that needs to be looked at. But medically, with dementia it's mostly about finding some meds to control symptoms, despite the recent hype about new drugs. Slowing things down a bit might be possible but is hit-or-miss, definitely nothing will cure it. It is also largely about the caregivers coming to an understanding about how to help the PWD.

Next folks her are going to stress that it's important to get your legal documents all squared away while your DH can still sign.

mrahope

I hear and feel your frustration, JN. Unfortunately, it seems to be the way the system works. And I live in a large city which has many neurologists. A friend of mine had some luck in simply proceeding straight to a neuropsychologist for testing, and then (armed with those results) to a neurologist and then psychiatrist. Sadly, as Vitruvius pointed out, there are many paths but few answers and caregivers are often left to make decisions with only their guts and very little "objective" medical help. My best advice has come from other caregivers here. They were so right about getting legal documents (wills, power of attorney, durable power of attorney for healthcare) managed. Also right about issues surrounding driving. This has been a safe space for me to speak about hard things. Welcome, happy to help if I can.

M1

Second the things Vitruvius and mra have already said. Unless he's a candidate for one of the IV drugs (in the context of a study), I wouldn't worry too much about losing time for treatment, because there's just not much out there. Getting your legal AND financial ducks in a row is very important, however, as a lot of these are best done while he is still competent to sign, and I can almost guarantee you that this forum will help you more than most doctor's appointments. Vitruvius hit the nail on the head when he said that it is largely about the caregivers coming to an understanding about how to help the PWD. Sorry you've had to join us, but you've come to a good place. Read a lot and it will help.

Ed1937

Welcome to the forum, but wish you didn't need it. The good news is that you will get a lot of help and understanding here, so post about any concerns you might have.

For the legal part of it, a CELA (certified elder law attorney) is what you want. They can draw up all the documents you will need, and they will tell you how Medicaid works in your state. They can also protect a lot of assets, draw up other legal documents that would be favorable to you. But this needs to be done while he still is able to understand what he is signing.

You need to learn all you can about this disease, and here's a good link for you. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

Denise1847

Please get the book "the 36 hour day" and check out Tepa Snow on You Tube.

You may want to consider going for counseling to deal with the grief process involving shock, denial, anger etc. It will take you by surprise. That may be part of your current feelings (please forgive me as I am not diagnosing - I have just been where you are with feeling overwhelmed.)

For me, becoming more knowledgeable, getting counseling and praying have helped me.

SDianeL

I know how you feel. My DH was diagnoses 18 months ago. it's frightening and mentally & physically exhausting. To recap the above posts, I would do these things In this order:

1. Get the book "The 36 Hour Day" as Denise1847 said. It helped me so much.
2. Get to an attorney NOW while he still can sign his name and get at least a DPOA. There are 5 total documents you will need, but at least get the DPOA. I just took my step Dad and it was about $400 for the whole set of documents. Don't wait. I'm so glad I got the DPOA because very rapidly my husband could no longer sign his name. I rented an apartment, sold our TV and bought a new car using the DPOA.
3. Learn about dementia & Alzheimer's. Realize that there is no treatment or cure so the Neurologist can't do anything except put him on medications to calm him or manage his depression. I never even got a diagnosis because my DH can't have MRI's & the VA didn't want to do a PET. So they "think" it's vascular dementia. They did put him on Memantine which is supposed to make them more focused but I didn't see any difference. Within one year I'm ready to ask them for something to calm him and make him less angry.
4. You will need assistance. Insurance doesn't cover it. Are there family members that could help?
5. After you get the diagnosis and you learn more, then start planning for long term care. Insurance usually doesn't cover it. Medicare only covers the first 100 days. You may qualify for Medicare & Medicaid if you meet the financial test. They don't consider your home when they look at your financials.
6. Please keep in touch on this forum.

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