First time to forum - realized I needed a support group

welcome! I agree with Iris. The behind the scene work arounds are key at this stage. Even though my HWD/Alz could be left at home alone , I didn’t because of things you describe . I deleted emails, hid power cords, “ lost “ his phone, stopped him from driving and many other things . Now he doesn’t even ask about any of that stuff. It was exhausting and very stressful and I cried— A bunch! Sertraline ( Zoloft) helped him during this time . Activities and hobbies at this point get harder for sure. Finding this group will hopefully give you ideas.

Adding my welcome. My partner is now in memory care but i remember what you're describing very well, she needed constant supervision. One suggestion (learned here): if you have a landline, turn the ringers off on the phones. You can probably do the same thing on his cell (or put Robokill on it, it works). You probably need to limit his internet access, and hardest of all, he should not be driving. Talk to your bank about the dementia, they can flag the account to prevent a repeat on the debit card.

IIf you don't already have durable power of attorney for finances and healthcare, get this done. That gives you true authority to protect him from himself.

@Lovzred

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

For me, as an adult child, this was the absolute worst leg of the dementia journey. Sure, there are horrors in each stage, dad's aggression as he lost autonomy, the pain of watching everything special about a LO fade and the bone weariness spousal caregivers have from the 24/7 responsibility of someone who can do nothing for themselves. But this phase, when a person looks and sounds like themselves for the most part but has the lack of social filter, lack of empathy for others, the inability to reason and has lost the executive function to keep them safe in the world while you're scrambling to install guardrails is hell.

This is an expensive disease. You will need to protect your assets to be able to provide care and respite down the pike.

We had a similar situation with my dad. Mom was in denial, so it took me the better part of a decade to get him diagnosed, and even then, he performed better than expected on the 10-minute tests like MMSE, MoCA and SLUMS. There was enough cognitive reserve (intelligence) that he did better there than IRL. About 6 months before dad died from complications of Alzheimer's, he scored borderline on MMSE— the man forgot the words, but his serial subtraction was impressive. Dad could showtime (another term with which you should become familiar— it's when a PWD can hold it together for a short period of time at the doctor's office or with family members which can make caregivers look as if they've been catastrophizing their reports) like there was an Oscar to be won, so we communicated with doctors via portal or email and backed up claims of aggressive behavior with video clips. After dad's doc told him how ell he'd done on the test, dad bragged about being off the charts all the way downstairs to the valet stand where he wandered away while my back was turned and got in some random little old lady's car. Off the charts indeed.

If you haven't already, you need to get the legal paperwork in order to act on his behalf— a durable POA for both financial/legal and healthcare decisions. At this time, you'll also need for find someone else— DH doesn't need to know— to act on your behalf.

There are so many ways in which your DH can do your household financial damage in this stage. Some safeguards you can do are freezing your credit with the 3 major reporting agencies to prevent him or one of his scammers from borrowing money. You will be given a password to unlock it later if you need to. My mom neglected to do this and dad went out to buy a new car while she was having knee replacement surgery— he explained he was having trouble getting places with his old car. He'd gotten lost getting to the special surgery hospital and then couldn't find the hotel in which he planned to stay which was directly across the street with a massive sign on it per my Google Street View. He'd called me for help. It didn't occur to him to ask security or one of mom's nurses where the hotel was. And for the record— he paid full MSRP for that new Ford. He also went through a phase when he was buying laptops because "they don't make them like they used to".

For scammer calls, there is a service called Tele-Calm which can greatly reduce spam callers and would totally be worth it if he could potentially wire someone money or even give out personal information.

https://www.telecalmprotects.com/

You might want to open a new account for household expenses to put the brakes on his access. I would leave the old accounts open and transfer funds as the direct deposits hit. If bank statements and bills are triggering, you might consider doing everything paperless and using a PO box for mail to avoid missing important material.

This is random, but if you have cable TV with pay-per-view options, I would lock that down with parental controls. Dad was another one with few hobbies and once he no longer enjoyed reading because his short term memory meant he could recall what he'd read on the previous page, he started watching a lot of TV. One day mom called me in a panic because her Comcast bill had gone through the roof. I looked at the bill- dad had ordered NBA Season ticket, NHL season ticket, Stingray Karaoke and Guardians of the Galaxy. Later when dad had difficulty distinguishing between reality and TV, I was able to block news, weather and mom's crime dramas on the main TV. Speaking of TV, maybe your DH would enjoy something like old westerns, old sitcoms or History or Military Channel.

The internet is no longer a safe place for him to hang out— there are too many ways for him to get in trouble. Checking his history is not enough. There's a risk of getting scammed via email or shopping for things you don't need. Dad lost $360K day-trading before he lost the ability to use the computer. There's no do-over for that kind of loss. Another issue some caregivers have had is their LO wandering into porn sites. I'm not one to judge around this, but if they get caught logging onto a site with children, something monitored by state and federal law enforcement, you could have a humiliating mess on your hands.

Driving is another hot button issue. With an Alzheimer's diagnosis in his medical record, the liability portion of your policy may be voided. I would ask your agent about this today. There is also a liability issue for the spouse or POA who has knowingly allowed a PWD to drive if they harm someone.

If he's very early stage, it might be appropriate to test his skills with a specially trained OT for fitness to drive but realize that this disease is progressive, and that test will only be a snapshot of that moment and no longer valid at some point. The problem is he'll be OK until he isn't, and your first inkling could cost someone their life. If he does have an accident, you could be sued, and his medical record could come into play. My mom, who doesn't have dementia, was sued for an accident (her 2nd in 60 days) she caused in 2020. It took about 2 years to go through to a court date with a deposition and meetings and it was stressful. A PWD would decline considerably in that time so that the jury would see a person who was much more impaired than on the day of the accident.

HB

Thank You for posting that excellent reply!

I particularly appreciated reading what ShowTime was! (We haven't gotten there yet. Although my sister sometimes suggest I'm nose-blind.)

I know you were responding to OP, and I'm grateful for your response.

When you had those POAs done, was he named as yours? If so, you do need to update that to someone who has the ability to advocate for you should the need arise. You already have your hands full and, as the other members have described from their own experiences, that probably won’t change anytime soon. Please don’t forget about yourself during your LO’s dementia journey.

glad your affairs are in order and that you have adult children to help (as much as they can, it's not the same as the 24/7 however. Wish there were some easy way to keep him occupied, but I know there's not. Is anyone coming in to give you breaks here and there? You will need them—probably now —for your own sanity. Sounds like you are rapidly approaching the point where he probably should not be alone, to keep out of mischief.