What do I do?

@MobbyGirl

Being caregiver is difficult at all stages. This stage— when there are obvious and significant changes in capacity but no diagnosis or medical guidance on things like driving or finances— can be especially hard for a caregiver.

Trust your gut. Whatever the MRI shows or doesn't show, more about that later, he's clearly impaired to a significant degree based on your description. One of the realities of dementia is that it's about so much more than just lost memories. Early on there are significant losses around social filter, executive function, empathy, reasoning skills and ability to learn new information. There's also the concept of showtiming which is when a PWD is able to temporarily hold it together and appear to be their formerly reliable and capable selves. This may explain why the folks at church are seeing a different version than you do at home.

At this point, you're stuck in a place where you need to manage harm prevention discretely even though you don't yet have a firm diagnosis. Much havoc can be wreaked in this stage. Not only have you assumed the responsibility of navigating the medical aspects of dementia, but you are also now in charge of protecting your DH's reputation and financial stability of your household.

During this pre-diagnosis phase of dad's dementia, he managed to burn through social groups in 2 states with his unfiltered talk and behavior, he lost $360K day-trading because mom didn't want to keep him off the internet, and he was impulsive making promises and spending freely.

The MRI can be useful in the diagnostic process; it can rule out tumors or strokes, and structural changes can support one kind of dementia over others. That said, the more important thing is what you're seeing in his symptoms and behaviors.

A therapist could be very useful for you. Just make sure you find someone who understands dementia as so many really don't and will offer strategies that are not appropriate to your situation.

HB

I understand the frustration of waiting seemingly forever for the doctors to provide information. I do want to warn you that, while some here have reported getting useful information from the neurologist, it is pretty uncommon for neurologists or most other folks in healthcare to have useful information about day-to-day functioning. This website is the only place for a lot of that information, along with a couple of books (like The 36-hour Day).

I get the frustration. DH began complaining to our PCP about having issues with his memory in 2019. I didn’t notice anything and thought it was stress related from a super busy work life. We went to a neurologist in 2021. It was impossible to get timely visits so we went to the Cleveland Clinic in Ohio. They had suspected diagnosis but nothing confirmed. We finally got a diagnosis this year.

Suggested tests would be an Amyloid PET scan to confirm or rule out Alzheimer’s. If that is negative then ask for a FDG PET scan. This one would show more data to confirm or rule out FTD.

Do not delay finding an Elder Care attorney. They can help with a couple things headed down the road, in addition to determining power of attorney for both medical or medical.

I did not have enough money to even consider Medicaid but it is a benefit to live on

When mom was finally diagnosed the neurologist said she should not drive and should not live alone. She also recommended we see a lawyer right away. We were told about a dementia workshop offered at the hospital which I attended (pretty basic stuff). Most everything else I learned on this website. I feel very fortunate the doctor told her not to drive or live alone. These issues would were made slightly easier being that we could blame it on the doctor. It also stopped me from second guessing myself and took away some of the guilt knowing the doctor said she couldn’t do these things. If he has a patient portal you can use, that is a great way to ask the doctor questions without upsetting your husband (at note works too). I think some (maybe even most) are hesitant to say no driving, no being left alone in the house. It still might be worth a try to ask about some of these difficult things.

I am sorry you are here. Along with an MRI, a PET scan and extensive cognitive testing are necessary for a diagnosis. There are also blood tests available that diagnose Alzheimer’s disease. If there is a Mayo Clinic near you, ask for a referral for the HABIT Program. It is an excellent program for MCI and dementia patients and caregivers. They will train you in Brain HQ online brain games that have restored my husband’s focus and executive function that he lost. You can purchase the training without the Mayo program. There is a lot of research on plant based diets and lifestyle changes to slow progression. Look at Dr. Dean Ornish’s program. He has clinical trials that slowed progression, and in some cases, restored lost function. See an Elder Law Attorney immediately to get legal affairs in order. Give a copy of your POA and medical directives to your loved one’s pcp. Get HIPPA forms signed to give you full access to doctors. Put TILE trackers on keys, wallet, phone. It also tracks the person. Contact your car insurance company and ask if an accident is covered with this diagnosis. Many will not cover an accident. You can get sued for everything you own. There are companies that will certify if you are capable of driving after a three hour test. If your loved one is driving, do this immediately. MCI and dementia impacts driving. Get accounts, log ins and passwords for all accounts, computers, phone. You will have to take over all finances. Put bills on auto pay. Call your financial broker, attorney, accountant and ask what you need to do now. Put a plan b in place for who would care for your loved one if something happened to you. This should involve touring assisted living/memory care facilities and getting on a waitlist. Take care of yourself.