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.

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Hello, @milomiles I commend you for the courage of your post!

As caregivers we always know more about what our loved one is going through in changes than we like to admit, I think. At least that was true with my wife and me. Driving was a tough one, but I also know it was crucial for my wife to stop long before she thought she should. There are too many dangers on the road to have impaired drivers out there. I also had to take over all finances in order to protect what we had left. Again, it was too important to allow her to continue with that work for the family. Thankfully we also did all of our end-of-life planning early, which turned out to be critical as she suddenly was not competent to sign those kinds of legal documents.

All I can say about the future is it is not promised to anyone, nor are we guaranteed our early dreams of how it "should" be. We can only celebrate that we have the future we do. While terribly hard to embrace, I believe it is important to celebrate what we have day by day.

As far as talking about my wife's condition, it was her desire to not share any of the specifics of her journey beyond immediate family and just two friends. Others find it therapeutic to publish their journey and/or share it widely. That was just not her style. Because of how my wife's mental capacities deteriorated, most of our friends ghosted on us, so that took care of itself. I do believe as a caregiver it is far too debilitating and exhausting to try and cover up the shortcomings of our loved one. To us, honesty was the best policy, especially as the demands of caregiving escalated more and more and demanded all of my available energy an time. Caregiving becomes all consuming and trying to pretend reality isn't real just adds to the exhaustion of caregivers. I also made sure we gave HIPPA approval to my wife's doctors t to share directly with our adult children. This helped me not have to be the constant communications hub and they were sure to get exactly the same information I was getting from the doctors.

Thank you for posting and please feel free to ask any questions or remind me if I missed things from your post.

I wish you Strength, Courage, & Peace

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Your situation sounds so much like ours. Been married 49 years and I’m just not sure the right path to take - let things continue as they are, or seek more help, possibly get a very scary diagnosis for which little medical help is possible, and demoralize someone who has been so strong all his life, even further. He is aware of his memory issues…ran his own company, always handled our finances, and I now am doing the same thing you are…following along, trying to be sure bills are paid and commitments are fulfilled. I have no advice for you, only a hug.

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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.

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@centre - thank you so, so much. This advice is immeasurable, yet actionable 🙂 I know that I have to start making the tough decisions now, so that we will be prepared (as much as possible) for later.

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You’re very welcome, we are all here for you and happy to listen to any rant, complaint, or question😊
Some other ideas- anything you can do to provide structure will help. I bought a larger-size calendar and wrote in whatever in the boxes, used highlighters to mark MD visits (yellow), tradespeople coming (green), my schedule (blue),etc. I bought a calendar clock on Amazon that has the day of the week, the date, the time, the part of the day (morning, afternoon, evening). When my husband would ask a schedule question, I wouldn’t answer the question, but instead direct him cheerfully to the calendar. It didn’t take long for him to see the calendar as an important resource that he could regularly check on his own, a bit of dignity and independence. If something was important, “be home for the plumber”, I would tape a stickie over the doorknob he would have to use to leave and also stick one on the fridge door handle at eye level.
Possibly what to expect- my husband lost the ability to use a cell phone, so I bought a picture landline phone from Amazon that has little clear pockets you put the photos or written names of people he would call (you, family, etc), you program the phone so he just presses the photo or name and it dials automatically.
Another idea- I started buying Healthy Choice Cafe Steamers frozen meals when I would be working and when putting together a sandwich himself got too much (I noticed he started eating easy stuff- crackers, cereal, chips). I would tape index cards on the boxes with the cooking time written with a Sharpie. That worked for a long time.
See what you can do to make YOUR life less stressful- I hired a house cleaner who is willing to also do laundry, remake beds, etc. I used Next Door to find a handyman for small household repairs (my husband always did these and still wanted to, but just couldn’t). I primarily shop for groceries online and use the curbside pick-up. I have a Walmart + account, you order online and they deliver for free, it’s $98/year. I switched prescriptions to Rite-Aid, they do free delivery. My husband is home during the day and is fine with receiving deliveries, all this saves me actually having to go in the stores and shop- a big time-saver.

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Hello all,

This is my first post and I am doing so in the privacy of my office at work with tears pouring down my face as I read about your journeys. I am grateful for all of the information and so scared for what I fear is coming.

My husband is only 58 years old and I have witnessed a slow decline for about 3 years. He has finally agreed to talk with a doctor and we have an appointment at Mayo on April 27th. My husband has spent his life with pride in his intellect. He has always been the smartest one in the room and the person everyone goes to with technology issues. He now can't seem to work his phone, constantly blaming Apple for messing with his account. He has changed emails at least 10 times in the last few months, saying that someone is stealing his account and can not remember a single password when I try to help him. He failed to pay the mortgage for 3 months and I wasn't aware until we received a collections letter in the mail. He has always taken care of things and I don't want to demoralize him by taking away things - so, I spend a lot of time going behind him and double-checking. It is exhausting! He is still driving, but has gotten lost in our community and seems so uncertain of his abilities...he seems scared sometimes. I always offer to drive when we go places and he quickly agrees, saying "if you want to it's all yours" and throwing me the keys.

My greatest fear and greatest hope are that they find nothing. I know my husband, we have been married for 25 years and something is wrong. There were many other issues over the past few years, but he has refused to accept help until now. I am not sure if he is ready to understand or is afraid that our marriage is being affected - either way, I am grateful he is willing to get help.

I am wondering if any of you have advice for me as we are just starting this journey. What was important for you as a spouse to understand? How did you cope with the fear of being the one who is responsible for everything? How did you talk with friends about what was happening? My husband is my best friend and I would never tell anyone about this w/o his permission and it has been weighing so heavily. I spend a lot of time making excuses and trying to re-route plans so that his issues aren't noticeable, though our 19 yo son has told me that he is worried. I try not to feel sorry for myself, but we have so many dreams for retirement and I see those slipping away.

I am sorry for the long post - this is the first time I have put this out into the universe. Thank you for allowing me the space and I am grateful for any advice you have as we start down this path.

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Thank you for all of your helpful suggestions. I bought the Alzheimer’s clock today showing the day and date and the large calendars for his doctor or test dates and use a yellow highlighter. Next will be ordering groceries online and pick up or have delivered. A housekeeper for the kitchen and bathroom sounds great. I need the time to take care of myself and spend time with my husband going to senior activities and enjoying ourselves. I am trying to think differently when I am feeling annoyed at him. I say to myself “he is sick and he is doing the best he can” and trying not to correct him (just suggest) and not argue because of the tension these remarks create. Thank you again for your advice!

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His driving might be of concern, even though he uses a GPS. I encourage you to put some sort of tracking device on his person. We use a Smart Care Watch which enables me to track him and also enables us to call each other. If he ever should get lost, call police right away. Don’t wait 2 hours like I did. He had gotten on the interstate and almost to the state line! That was before we got the watch. He never drove again after that day.

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