Husband With Slow Cognitive Decline: So sad & confused

My heart goes out to you and I so recommend you read Mentor Scott’s reply as often as you need to, every day, every hour. You can do this, because you have to do this, there is no one else to steer the ship of your household.
First- make an appointment with an attorney to get all legal documents in order while your husband is competent to sign them (wills, power of attorney, advanced directives). The lawyer can also advise you as to financial set-up recommendations for the future.
First #2- quietly take over the financial part- gather the paper bills, take them to your bank branch and they will help you set up online banking. I quietly pay almost all our bills from the bank app on my phone. The ones that don’t allow that (local taxes, water bill, etc), I call and ask when the bills come out and mark in my calendar book to call and ask for the amount due if I haven’t seen the paper bill (my husband would collect the mail and leave it “around”). Those bills can be paid with the bank app online too- they send the paper check. You can see the statements online on your phone or quietly take the checkbook and keep it in your purse. My husband didn’t even notice it was gone. Also consider putting as much as you can on automatic pay from your checking account or a credit card- I did that with our house, auto, and health insurance- didn’t want to take the chance those would get missed. They send you an e-mail when the deduction or charge is made.
Next- VERY IMPORTANT- if you aren’t on online banking already, get the paper bills for your husband’s credit cards, download the card apps on your phone, and set up online accounts. Go to the Alerts setting and choose any charge over $1.00. It’ll send an alert to your phone if the card is used- my husband started buying and buying online. You can set a purchase limit online but it’s usually kind of high. Stopping card purchases isn’t hard if you have to- I tapped on the card apps that the cards were lost, they sent new ones, I didn’t activate them, lots of power tools and shady health supplements later. I told him the cards had been hacked, you can get fixed dollar amount gift cards at the grocery store, so “we’re safe from hacking”. If your credit cards are joint with him, I strongly recommend you call and tell the companies you want your own cards and to be taken off as an authorized user of the joint ones. No explanation is necessary- Suze Orman suggests this in her best-selling books as a good thing for women to do, so the companies are used to these requests.
Next- to be prepared- make sure any car titles are in both your names in case you need to sell “his” car or transfer the title to your son, when he’s not competent to sign or doesn’t understand it has to be done and refuses to sign.
Warning Alert: it will feel weird and dishonest to use these quiet ways of working around your husband’s cognitive deficits, BUT you have to protect the financial well-being of your household and he is now, or will be, NOT capable of doing so. Being completely up front about his inabilities and difficulties to continue and your need to step in, is in my opinion, more harmful and hurtful than just quietly doing it. If he does notice, a cheerful smile and deflection is much more respectful and keeping of his dignity, he probably doesn’t think it’s more than just some memory problems- personal insight and MCI don’t travel together, ever!
Finally, this will be hard to think about doing, but you mention a mortgage, I decided to try to pay off our mortgage as fast as possible as future income potential was now up in the air, I got permission to start my full-time job at 7am (I had considered getting a paper route), got two part time jobs- went to the first one after the full time one, home by 6:30, went to the next job on Saturdays. When I was within striking distance, I cancelled my life insurance and took the payout- my youngest was a young adult, I figured I would save up after for my burial costs. It took three years, but I did it- the mortgage and car loans are paid off and we are debt-free, it’s a huge relief. I figured I was only going to get older and he was only going to get worse. He was safe on his own in the house while I worked, but how soon wouldn’t he be? Time to make the donuts 😊
Yes- you can do what has to be done. You can and will be the rock for your family. Scott’s phrase of “Strength, Peace, Love” is an excellent daily mantra for us all.

Another suggestion- if your husband is still working, let his employer handle whatever from their end. They will be the ones to notice what he is having difficulty with and the ones to decide what to do about it. They will try increased supervision and action plans, but will not ask him or you for a diagnosis as this opens them up to being responsible for possible ADA requirements of “reasonable accommodation”. Let it play out as long as it can, keep those paychecks coming, don’t resign without a good severance (6 months pay and health insurance?) 🙂 Be patient.

I thought my husband’s driving was still ok, until his daughter called and said she’d been scared, riding with him. He’d always misplaced things, so we just “ couldn’t find” his keys. He had a brain biopsy done at Mayo and the neurosurgeon told him he wouldn’t be able to drive again. As he felt a little better, he wanted to drive. A nearby hospital has a program with relatively simple written tests, that he couldn’t pass. They did take him out in their car and he was too distracted. That helped him understand he couldn’t drive and we got an ID to replace his license.
On another note, it is imperative to get finances, Power of Attorney and estate planning done, sooner, rather than later! I went to an Elder Care Attorney. Expensive, but worth it. I sleep a little better and worry a bit less. If you haven’t, please check with your local Area Agency on Aging. They can often direct you to resources you didn’t know were available.
I do understand the frustration at loss of plans, vacations and yourself. We are in the 12th year of this and I have become used to the routine. I have to keep busy and distract myself from the present reality. I feed birds, garden, read, paint (both walls and on canvas) and it helps me cope.
Finally, I’ve gotten rid of a lot of “stuff”. Clothing, furniture, decor and anything we no longer need. It has been freeing and I have not missed one thing I’ve donated, sold or trashed. I hope this helps.

We go to the Neurology Department at Mayo Clinic in Jacksonville, Florida. Our main neurologist is Dr. Phillip Tipton, and he is very personable, kind and compassionate amid a wealth of knowledge and experience that makes him one of our favorite doctors. In the Department of Psychology we see the amazing Dr. Tanis J. Ferman. She is considered an international expert in the field of Lewy Body Dementia. It is easy to Google her name and see some of her online discussions.

I went through all this with my husband who had Parkinson's dementia. It was really hard. He died very unexpectedly at the age of 80.

I’ve come to understand, he really doesn’t remember. So just answer briefly as if it were the first time. Sometimes I make a little jingle out of my answer🤣.
Him: Where are we going?
Me: 🎶We’re going 🎶to the soccer field, the soccer field, the soccer field, to watch our sweet girl play🎶. It answers his question and helps me vent a little.

I understand. My husband was diagnosed with a mri with vascular dementia. He was put on medication which caused horrible side effects and did nothing else.
Personally I wanted to know so we could be prepared financially and address his driving (3 accidrnts)
Plus he was a heavy drinker which we were told would make it worse if he continued. We moved and he saw a new neurologist who did a Petscan, extensive cognitive testing and driving assessment. We were told that he has front temporal dementia and the medication he was taking was not going to help. They increased his Zoloft which helped. We were advised he shouldn't drive (he was not happy and fought this), he shouldn't drink and we should remove his guns as a preventative.
As his spouse I felt like I needed to know so I could try to educate myself for what might come. He is still doing fairly good but is forgetting to bath and his short time memory is getting worse and he repests things over and over. I handle all financial issues and have a POA and Medical directive for him. All of his doctors know that I must be wirh him at his appointments because we gets confused what medication he is taking. I also make sure he takes his medicine on time every day because he was forgetting. We take it one day at a time. Embrace the good days, tolerate the bad.

This all sounds like me; I look normal but dementia is extremely difficult for me as internally I struggle with almost everything. It took me 45 seconds just to look up the word dementia, another 30 seconds to write interally. Simple words when taking is ok; but don’t ask me what I am looking for or need, how to get from point a to b without gps. I had to retire from my best job I work so hard to get, lost my pilot (I had to take 30 plus seconds to figure out how to spell it) license which was my patience! It is and every hour struggle!

Thank you gcranor for taking the time & effort to post. It really helps me to hear what it’s like inside the head of a person with dementia. I get way too impatient with my partner who has Alzheimer’s & today I think I can stay calmer, thinking about what you said.

Thank you so much @centre , sadly he has struggled with employment over the past few years. He had a great career until about 5 years ago. We moved for my work and decided it was a great chance for him to start over. He has had several jobs since then and will quit before he lets them see him struggle - so, he has not had a reliable paycheck in a long time. I am the primary breadwinner and insurance is contingent on my job. I have benefitted from a long, successful career with stability...but, my job is high pressure and long hours. So, it has its challenges, as well.