First time to forum - realized I needed a support group

Lovzred

My DH had AD diagnosis last summer '23. He had declining memory over the past 5 years with all tests - 3 times over those years- MRIs, MRAs, EEGs, etc. and all said Normal. The only test declining was the neuro-psych test which verifies he is down to the Minimum of short term memory. He will be 70 in June - I am 66. It is SO exhausting and frustrating as he maintains is intelligence as knowing how things are Suppose to work, but does not remember How or What to do. We can go a week with things going okay and then a month or two of helter-skelter. I spend endless hours and days undoing what he has done. Like I said, he has 'just enough' memory. To the average person he seems 'normal' - he can fool most that do not know him. He had 2 full careers, one 22 years in the military & 24 yrs other.

He has signed up for extended warranties on the phone with scammers when I am outside. He called to pick up porch furniture thinking they forgot the entire donation. He has begun to paint my back porch brown when it is gray (I thought he just went out for fresh air). I thought he went to get mail and he drove off- went to bank and got new debit card, etc. (I had taken his away) and went shopping for the same things we did not need. I came home from an appt and pulling into the driveway he had pulled up 4 mature bushes in front of my porch and they were in the trash… this is an example of one week!

I get up in the middle of the night and delete/block what he has created on his calendar in his phone and computer. I know it is not his fault. He cannot remember. He has No hobbies. He has No interests. He has no interest in going to a recreation center - 'that is below him'. I try to give him things to do but he doesn't Want to do things around the house; he wants to "do things that make a difference." ANY SUGGESTIONS ???

Iris L.

Welcome lovzred. Familiarize yourself with anosognosia, he is not aware of how impaired he is. You will have to become proactive and learn the work-arounds that the members use. Do not discuss dementia with him, do the work-arounds in the background.

Iris

Jgirl57

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.

Lovzred

https://alzconnected.org/discussion/comment/203769#Comment_203769

Thank you. This is the first time I have heard of anosognosia. I feel like I have so much to figure out. I will be heading on this tonight. I think finding this forum is a light for me. I have a lot of questions, but will be reading up on the anosognosia & dementia and how to deal with it. I thought I was doing some work-arounds. Maybe I am not or maybe I am and there are tons that I do not know of yet.

Fortunately, I don't discuss dementia or condescending language. I hate that we have to talk about it in front of my DH in doctor appts. Hopefully the information readings I find will show me some work-arounds in the background and help greatly. Thank you.

M1

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.

northernlady

https://alzconnected.org/discussion/68703/first-time-to-forum-realized-i-needed-a-support-group

Welcome, and as others have said, sorry you had to find this forum.
I too am brand new to this journey. I confess I feel frustrated looking for answers when I don't even know what questions to ask! It probably doesn't help that I am scared, tired, frustrated, and grieving.

My best newbie advice to you is to first learn the "language" of this forum. I often read and reread replies trying to figure out what the members are talking about! ha ha ha But everyone is kind and offers support and keep asking questions. It helps other newbies like me.

harshedbuzz

@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

Jeannielou

Thanks for useful information. Sorry you had to experience it but thank you for being willing to help others

northernlady

https://alzconnected.org/discussion/comment/203799#Comment_203799

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.

Lovzred

https://alzconnected.org/discussion/comment/203782#Comment_203782

Thank you fir those suggestions. I sold his car this week. When m DH was in mild memory decline a few years ago we went to an estate attorney and had everything done that was necessary at that time… POAs - general & financial,living will, will, trusts, etc.

Phoenix1966

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.

harshedbuzz

https://alzconnected.org/discussion/comment/203847#Comment_203847

Good point and one that bears repeating.

Another important consideration for any caregiver is the need for a robust Plan B. What's your safety net? Who steps in should you get seriously ill or injured and can't attend to your LO? Or worse, what if you're one of the 1/3 of caregivers who dies first?

When dad was diagnosed, I learned about my parents' financial life and found both a SNF and a couple MCFs that would be workable if something happened to mom. Now that I am semi-caregiver to mom— I make sure her successor agent (my niece) has access to mom's medical records and passwords should something happen to me.

HB

Lovzred

https://alzconnected.org/discussion/comment/203847#Comment_203847

My eldest child is my POA.

Lovzred

https://alzconnected.org/discussion/comment/203850#Comment_203850

My eldest adult child is the Plan B legally also for my DH should it is needed. As far as just stepping up, the youngest adult child will also help. The other 2 travel with business.

M1

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.

Lovzred

Not so far. I am the one with the social life and my DH was the one that relished his private space at home away from the ship/office/travel. I did take my DH to m eldest's home ( a few hours away) for a weekend in Jan & Feb so I could get a few things done and good sleep.

I had thought to hire a 'handyman' 1x a week to do some things for me and 'befriend' my DH. Then move toward that 1x a week to just plain 'visit' and maybe do errands alone. But, I do not know where to begin where to look.