The discomfort of public acknowledgment of illness

storycrafter

I just did something for the first time that felt very uncomfortable. On the advice of my counselor, I sent a confidential email to family and some good friends, letting them know to take emails my husband forwards to them with a grain of salt. I notice lately he's been sending more forwards of potentially controversial/political emails. He does it in afternoons and evenings after he's had a drink or two. I'm hoping people won't take them personally and take offense. He's been a little more agitated because we're soon to have family visitors coming from out of state. I know loss of inhibition is a hallmark of his disease and I'm sad to see it become a little worse.

It felt risky and strange to send that note out, but my counselor said it was important for me to acknowledge, and that I'm going to need more support from family and close friends. In the grand scheme I suppose it's a relatively small thing to do. I imagine family and friends will be kind and understanding about it.

I suppose it's like the first times of telling your LO helpful fiblets to reduce their suffering. It feels strange and disloyal somehow. It's also a more public acknowledgment this illness is real. It's most painful first time admitting it "out loud." At least I hope it's just the discomfort of doing something new for me, and not that I've done something unneccessary and unethical.

I'm curious what others' perspective might be. Was my counselor wise in her assessment? I trust her. But it surely feels weird to send that note.

Thank you for listening and for being here.

M1

I think she was absolutely right storycrafter.  I wonder if it would help you to think about how you might respond if the shoe were on the other foot and you were receiving such an email rather than sending it. I would bet my bottom dollar more than one of these folks already know or have noticed that he's not right and will be relieved to hear the truth from you or to know that you're aware.

couple of red flags in what you've said though-the computer access and the alcohol are worrisome separately and together. You may have to take steps to limit both.

harshedbuzz

storycrafter-

I think it was wise to share if only to unburden yourself from carrying the weight alone. Whether it will buy him some grace from others the next time he does or says something that offends is another matter. 

This unfiltered behavior was one of the earliest symptoms of my dad's dementia. He was unceremoniously dropped by his golf group here in PA, so they retired and moved to coastal MD. Even his brother, who had at one time been inseparable avoided him. He understood, intellectually the whys of dad's offensive behavior but didn't care to subject himself to it.

Within a few years, dad was persona non grata with many in MD, so they started spending 6 months a year in FL. By the time he was diagnosed and my parents moved back to PA, his only social life was the neighborhood happy hour group in FL which I caught him hosting wearing only a bath towel which calls me to question the whole lot of them.

I would disconnect him from the internet. He is no longer safe out there. He could fall prey to scammers, share personal and financial information, buy expensive things you don't need and can't afford, wander into porn sites that are being monitored by state troopers-- the list is pretty endless. My own dad lost $350K day-trading by the time he forgot how to use a computer. I'd cautioned mom to shut it down, but she blew me off. In retrospect, I should have reset their wifi password and told him his internet was down. 

HB

Ed1937

I think your counselor was right. But the thing that bothers me is the political stuff. This nation is so separated about that stuff, someone will likely be offended by it if they receive an email like that, even if it's family. The internet has to become history for more than one reason. But t least your family/friends will know it's because of the disease. It was the right thing to do.

Quilting brings calm

I’m in agreement with ED on the division of this country.  My friends don’t use email any more for forwarding things like that/ they use Facebook.  My timeline is full of political and controversial things that I do not agree with from people who I am sure do not have dementia.  It is also true that I have stopped my interaction with some of them as much as possible, depending on the nastiness of what they post and share 

It’s a good thing that you’ve notified the recipients of his emails.  Some of the recipients may stop sending him emails that he would then  forward.  Some may stop interacting with him due to your email- people who would have eventually anyway as they gradually learned of his condition.  

MaryG123

Thank you for bringing this up Storycrafter.  My DH is on the internet more than I think is reasonable or safe, and the idea of changing the Wi-Fi password is a good one.

Rescue mom

You did the right thing, IME. I told people ASAP; everyone was kind and supportive. I wish I had done it sooner.

My DH behavior/actions/remarks had become noticeably “off,” even I did not realize how much. Later I learned there were rumors of substance abuse, and/or  he was being a jerk, or didn’t care about a problem at hand. Once they knew Alzheimer’s, the support and understanding was unfailing.

Computers compound the problems, especially with money and illegal porn; I didn’t even think about politics. Thankfully mine lost computer abilities and/or could be easily blocked, very early.

Joydean

I agree with all the others, you did the right thing. I told our kids as soon as I knew for sure and our closest friends. Most knew something was wrong anyway. My dh didn’t like using the computer and wasn’t long before he couldn’t even use the phone, so I’m glad I didn’t have that problem. But I have to admit he seemed to have lost filters pretty quickly and sometimes what would come out of his mouth was pretty embarrassing.

storycrafter

Thank you, everyone. I appreciate your feedback and affirmation. I feel easier about it now. A couple people wrote back it was no problem.

Rescue mom

Susan, about people “dropping” you…my experience was that many people did not want to “see” or deal with DH for any length of time. They stopped visiting or getting together with us as a couple, but they were (and are) fine and active and supportive —all that—with me alone. (You kind of referred to that, I think). And I absolutely do get out, I have to. It’s sad, but I honestly don’t think he misses it, he won’t stay around many other people regardless, no matter how hard they try to accommodate him.