DH won't go for testing

Gideon1504

First time here - getting to the stage where I need caregiver support. My DH doesn't have a diagnosis, as he's in complete denial that he has any cognitive issues. Our PCP has given a standard test for age-related cognitive decline, which he has passed, technically. What we're living with: he can't manage finances at all, has started ordering (expensive!) things he sees in ads but then can't find the item at home and insists porch pirates/the housekeeper took it (when in fact it hasn't arrived in the mail), has totalled his car, needs GPS to go even to familiar locations, can't find his passwords or contacts in his phone or understand how to use a password manager, goes to the grocery store at least 4x a week for 1-2 items and asks me if I want anything, but can't find any requested items in the store; has started to choose things for himself to eat that he'd never have touched before, can't navigate the TV or remote for any functions he hasn't recently used, so he watches the same shows over and over; constantly asks me when I'll be home, but forgets what I said, so constantly texts me at work asking when I'll be home; is upset now when I have a business trip (when he's always been extremely independent and travelled constantly for work); has recent-onset trouble sleeping, so he takes multiple melatonin & CBD remedies (at least he sleeps now, but I suspect the remedies are exacerbating cognitive problems); has become detached and even dismissive with his lifelong closest friends; is still working full-time but is constantly re-scheduling his meetings since he can't organize getting ready for work on time, even with a 4-hour window; can't travel alone any more without getting lost in the airport and missing a flight or losing something; can't make travel arrangements any more; has been dismissed from multiple annual engagements that he held for decades; got us scammed out of a staggering amount of $$ "loaned to a friend" while hiding it from me (I'm having to manage the legal process to get it back); asks me about what we need to do in our daily schedule or household tasks, but interrupts and changes the subject when I answer him, so it takes 5-12 exchanges to get him to understand the answer to what he asked; I have added AirTags to EVERYTHING since he loses his keys and other necessities - but he can't figure out how to find the item with the FindMe app; has stopped grooming his nails; is very focused on what the pets are doing (and does take pretty meticulous care of them, which seems to make him happy - unless they need to go to the vet, as he can't remember what the vet told him he needs to do to care for the pet/tell me so I can get it done...so we have spent hundreds taking the critter back to the vet for a problem that could have been cleared up if DH had remembered to tell me the diagnosis); has developed an obsession with the color of clothes people are wearing and constantly points out that two people are "dressed alike" (even when they're not). He is having trouble remembering how to spell words, so he asks me, but writes it down wrong and then can't find it in his phone. Nearly everything that goes wrong, he blames an outside party, and there's a constant stream of things "going wrong" daily. He hides things from me and will lie if he thinks I'm putting any pressure on him, so I'm being extremely careful to just take care of things without giving ANY hint of a negative reaction. My dad died from late-stage dementia and my mom was NOT good with him at all. She wasn't getting caregiver support and treated him like a burden, and I'm sure he suffered depression and a lot of anxiety because of it. I know that more than ever, my DH needs to trust me, and he needs whatever it takes to be happy, because his relationships with the people closest to him are all he will have before too long. I strongly suspect he will be made to retire soon, which he's resisting as he's extremely career-oriented and has no other interests, especially now when he's not learning new things and has lost all curiosity and sense of adventure. He has stopped his outdoor activities. I've accepted that my beloved partner is a different person now and I'll be a caregiver for the duration. But I strongly feel I will need a support network to navigate this. Thanks you all for just being there!

jgreen

Dear @Gideon1504

So very sorry you find yourself here; but indeed glad you found us.

First things first- Your DH had a condition called anosognosia - the inability to recognize impaired mental function. In other words - his brain/reasoner is broken. There is no point arguing or trying to explain things as DH will not understand.

You listed MANY symptoms you’ve observed - good for you. I will attach a staging tool from Tam Cummings website. In it you will find a checklist to help you determine where your LO resides in this terrible journey. If you are able, I recommend you use the check list to document 7-10 succinct behaviors and share with his primary provider. Do your best to schedule an appointment and tell your DH that it is time for his regular checkup (called a therapeutic fib) to get him there. See if you can get a referral to a neurologist or geriatric psychiatrist for a more thorough assessment.

Dementia Behavioral Assessment.pdf

Other recommendations are to get in touch with an Elder Care attorney and get your legal affairs in order - durable power of attorney, healthcare surrogates, HIPPA forms, and will/trust. I went to the attorney alone on first visit and spent an hour talking about what steps I needed to take and in what order. Then took DH saying ‘we’re getting older and need to make sure our affairs are in order and that our wishes are followed”. He was amenable to this. Also the attorney said I had 3 chances to get him there - having experience that sometimes the LO balks initially.

Talk with the attorney about your DHs job and how to go about getting an early retirement or even disability BEFORE he gets fired! There is also Family Medical Leave for you if you need to take some time off to get things in order.

Read up on the disease. There are informative books (like the 36-Hour Day) and healthcare professionals who offer lots of advice and tips for navigating these behaviors. Teepa Snow, Tam Cummings, Natalie Edmonds and Camille Sinclair are all professionals I found helpful.

Come back and let us know how you are doing. We care about you!

Goodlife2025

Dear @Gideon1504

So sorry you need to be here but I agree with everything recommended above. You are doing a lot but it sounds like it is time to take control of the finances and other things. Create your own passwords to accounts and then fiblets about why he can no longer shop. Computer's fault, vendor glitch, mail is late whatever it takes. The financial impact to us before I really knew something was wrong has been a bigger external factor than I could have ever known was possible. You must take control even when you are able to arrange for outside help. Come here often you will get much needed advice and support on all the "joys" of this dementia journey.

SDianeL

welcome. Sorry about your husband. You have received good advice already. I would add that you must take control of everything. Finances, mail, internet etc as he is vulnerable to scams. Your husband needs to retire before he gets fired. He can then file for SSDI. Based on your list of his behaviors I don’t think he should be left alone any longer and he definitely should not be driving. Dementia is more than memory loss. His brain is broken. He wouldn’t know what to do in an emergency and if he’s in an accident your insurance could refuse to pay and you could be sued and lose everything. To get him to the doctor tell him his insurance requires it or his primary doctor said so. Unless he has early onset Alzheimer’s a definitive diagnosis won’t matter much. My husband’s doctors were no help. This is the place for help and support. Come here often. We understand what you’re going through. One sentence I learned here that I repeated throughout the day was “You can’t reason with someone whose reasoner is broken” that mantra helped me be a more patient caregiver.

H1235

Welcome. You mentioned you want your husband to be happy. Unfortunately with dementia as caregiver we are often forced to choose between happy and safe. As you look at the DBAT notice that it gives a rough age equivalence at each stage. It also suggests the level of care needed for that stage. I would suggest you use this as a guide when deciding what he is able to do. For example would you give a 10 year old a credit card, let them drive, or make big financial decisions? To be honest, based on your description of symptoms, I’m not sure he is even safe to be left home alone, let alone drive and go to work. No one wants to take their loved one’s freedom away, but if you don’t you could be putting his life in danger as well as financial security. Dementia care is expensive. You are on the right track with just doing what needs to be done without telling him or confronting him. As others have said there will be no convincing him there is a problem.

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

Michele P

Welcome. You have been given most of the advice I would give you. Getting your legal affairs in order is your immediate concern. You need to do this while he can still sign documents. Get HIPPA forms signed for all doctors and facilities giving you access. Your husband should not be driving. His insurance company will not cover an accident making him at fault. His doctor should report him to DMV so that they take away his license before you get sued for everything you own. Take over all finances. Set up email alerts for any deposit or withdraw from any bank or brokerage accounts. Put bills on auto pay. Get the name of an SSDI attorney and set up a consultation. Your husband will not be working much longer. This retirement should be on your terms, not through dismissal. Put a spare set of keys and anything else of value in a safe. Safety is number one. You need to protect him and yourself. He is no longer capable of doing that. Come back here for help and support.

Gideon1504

https://alzconnected.org/discussion/comment/267213#Comment_267213

Dear JGreen, thanks so much. I didn't realize there was a name for him not realizing he has a problem. The assessment sheet is very informative. Fortunately for us, since other family members went through this, I picked up a few years ago that we were going to need to have our affairs in extra-good order, and took over keeping the household accounts. We have done all our legal forms and have a family lawyer. We married late in life and have assets that each of us acquired before we were together, so I formed a LLC with the two of us as partners and transferred ownership of the assets to it. He can't get scammed into selling or giving away any of them without both of us signing off on a bill of sale. He has become very suggestible and I am having to oversee everything while trying to ensure he feels that he has agency and autonomy. I have the chaos contained to just the "friend" who panhandled him for a lot of money (out of an individual account DH had since before we were married), and there's a legal path forward with that. The Kraken is being released on that person, will full FAFO consequences of felony elder financial exploitation plus that the elder exploited is my husband. All through very polite, mediated, legal channels.

Though we have no conflicts and get along peaceably and very well, and I care very much about him having life on his terms and being happy, I fear losing my grounding from constantly picking up the pieces from illogical behavior. I do feel sad, vigilant, and stressed. Although I'm keeping up the appearance of being patient with being designated his 24/7 tech support and secretary, it's really hard when I have a lot of work pressure (I'm mid career while DH is past retirement age). All my friends are work associates and I don't have anyone to just talk to about personal matters. I'm sure I'm going to need a counselor to get through this. I'm looking around for some kind of online support group meetings.

Gideon1504

https://alzconnected.org/discussion/comment/267292#Comment_267292

Thanks so much. I've got all the bills on auto-pay and have access to all the accounts, and alerts. We've done all the estate planning documents - power of attorney, HIPAA, etc. Driving we have managed to reduce to only going to the store or his office which are each very close to home, and that because going to the supermarket is his only hobby. It doesn't eliminate the risk completely, but I'll work on the next step. We do have umbrella insurance as an extra protection against lawsuit-happy opportunists and primary insurers that obstruct coverage, but of course eliminating risks is the most important.

jfkoc

Please check that the POA is Durable.

While testing may give you a diagnosis it is not going to help you much with taking care of your husband or your household.

Testing would begin with "routine" lab work. Your husband can be told it iss a Medicare requirement.

beachwalker5

"We do have umbrella insurance as an extra protection against lawsuit-happy opportunists and primary insurers that obstruct coverage"…..a very risky bet at best. ALL insurance companies ALWAYS look for loopholes to get out of covering claims or going to court for you in a $$$ liability case. DO. NOT. LET. HIM. DRIVE.!!!!!!

I feel your/ his pain. Loosing driving privileges is a tremendous loss of independence for both of you. It sucks but taking responsibility for his physical and financial safety (and the safety of others on the roads) comes first. Best of luck to you in your caregiving efforts.