Question about 1) stress and 2) internet use

Anna2022

Hello all,  my DH is not yet diagnosed but is definitely showing signs/symptoms. He does not have insight. I joined this forum a short time ago and I am learning every day.

Lately, I've noticed that when DH and I do something out of our usual home routine, he gets quite agitated and super annoyed about a variety of things. Is he stressed by the change in routine? If I ask, he denies that he is stressed or annoyed. Sometimes, I go with the flow, proceed with plans (he usually goes along and then gets happier as time goes on)  or give into the mood and cancel plans. I've done both... what might be best?  Is there a best in these situations???

His repetition is sometimes behavioral (rather than repeating questions) -for example, he will try to access his bank account online but get frustrated because he can't remember the password/s, and will try repeatedly at one sitting or go back to the task several times per hour.  He talks about how frustrating it is - blaming the bank or the website always.  If I can distract him, he will forget to go back to the task. I get that redirection is helpful but my question becomes then, how do I handle his access to the internet???? It will become a bigger problem, I'm sure!?

Every day, there seems to be something new going on. My stomach hurts.

MaryG123

Hi Anna2022,

I’m sorry you’ve had to join us, but my situation is much like yours, early days.  I’ve learned not to ask questions, but to try to read his mood and energy level when deciding whether or not to pursue an activity.  Usually, if I can manage to be upbeat about it, he will be too.  My DH mimics and copies me a lot now.  I’m guessing as the dementia progresses, his apathy will get worse and he will have less energy, so we will have to limit activities even more.  

Re the internet, my DH is losing his ability to use electronics and access websites too.  I have stopped helping him, so he will not be able to access bank accounts etc.  With his judgement compromised, I’d rather he wasn’t on line.  My hope is that he’ll gradually just stop trying.  That being said, you will need to keep track of his email, bank, utility, and medical sites and passwords, so you can manage the finances and legal issues.  One problem I’m having is that DH sometimes changes his passwords when prompted, but doesn’t remember doing so.  Then neither one of us can get in.  . Sorry I don’t have a good answer for you.

toolbeltexpert

Anna. I want to say you are dealing with a tremendous amount of stress.  You need to try some of the stress reducing tatics. Deep breathing is a really good tool. I have to constantly remind myself and many times I would read a post saying just that and it would help it. I don't know how tech savvy your dh is but you might go to setting and change the password in his computer for the internet so it can't connect and then fib about how it's down every where. My dw wasn't tech savvy at all so it was easy, I also disabled her phone data and would make my phone not work and use the same reason, it's down every where. Once you know how to do it it works, but if he's tech savvy all bets are off. There are folks out here who have list large sums because the pwd had internet access.

I really hate each thing we have to figure to keep us and our lo safe, but we have to find ways. Others will chime in with their experiences and one of them will be a perfect fit.

Stewart

Anna2022

Thank you Mary and Stewart! Its good to know I'm not alone. But truth is sometimes I feel so very very alone.

DH is very computer savvy, although there are deficits starting to show there too. It may be too early to cut off internet as he can figure out what I've done and that is problematic. I guess I'll have to wait until he gets worse. At present time, he refuses help with passwords and online issues and I guess hould be careful in giving him help (?) - (it feels punitive and mean sometimes to not help!).

I have independent access to bank accounts and financial accounts but not to the medical sites so changing passwords may become problematic. He is inconsistent with his willingness to share information - sometimes he refuses but if I circle back later, he will willingly share information and sometimes the new passwords with me (if he remembers them!!). 

The stress is something I'm trying to work on....deep breathing, meditation, support groups, exercise, all help, but I do forget to breathe sometimes when things get weird.  Thanks for the help!!

piozam13

Anna, My DH used to have his bank account and I had mine.   But at some point, I made sure our accounts were in an "or" and not "and" so that either he or I could access and transact on behalf of each other.  I kept tract of passwords, so I could check on his online transactions/ activities. This proved to be a good move - as I did not have problems when he finally joined our Lord.  

As you know, there are personality changes.  Getting agitated for very minor reason was one early sign exhibited by DH.  When he was diagnosed with MCI, the doctor told me his symptoms were very mild, but I was told I needed a lot of patience and understanding.  This forum helped me a lot.  Keep asking and reading. 

Lizzielou

Anna, you have come to the right place for some insight into these difficult situations.  No answer fits every situation but I have adapted suggestions to fit my needs.  For stress what helped me most was to arrive at acceptance.  This is the way it is going to be and I have to adapt to it. I’ve lowered expectations, read voraciously so I know what is coming, and accepted all help offered. I try to be flexible and patient since it takes him MUCH longer to get things done now.  No rushing.  Be prepared to cancel any plan.  I have forced him to go along with disastrous results.

I try to exercise but find I can’t leave him for extended periods of time so it is getting harder to do that. Keep it up if you can.

My DH has always been somewhat OCD but it is magnified now.  He will try something over and over because he just doesn’t have the ability to come to a logical conclusion.  I mostly leave him alone.  Eventually he stops.

As for electronics, my DH first lost his ability to use the computer (which turned out to be a blessing because he can’t sign up for or pay out anything), then he lost the ability to use the telephone (can’t navigate menus or understand robotic answers) and finally is unable to use the tv controller.  You are in charge now.  I hide mail that will confuse or upset him like bills (he tears them up) and charitable requests (to which he has tried to donate huge amounts).

But finally if it is not a health or safety issue, let it go.  Best wishes.

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Joe C.

Anna, One concern with the internet use would be the financial accounts. As mentioned above, getting a CELA onboard to so your legal & financial house is in order should be at the top of your list. Delaying this could have disastrous results down the road.

As for whether or not to cancel plans I alway tried to keep DW socially active to the greatest extent possible for both our wellbeing. May if your husband is resistant to go somewhere maybe try just to adding something to the outing that he would more likely want to do. For example if he foes not want to go to a friends house say, “let’s just stop by for a few minutes then we can go for lunch/ice cream/the park” what ever works. Once at the friends he might be totally forget about any other plans.

Keep on exercising, it’s what helped me keep my sanity.

harshedbuzz

Anna-

I am not a spouse, but I did support both my parents through dad's dementia. I am so sorry you are dealing with all of this-- it's very difficult and painful stuff.

While others have made important suggestions around getting your legal life in order for what lies ahead, I would also suggest you have your DH evaluated. While rare, it is possible that your DH has some other health issue that mimics dementia but that might be treatable. My mom fought me on having dad evaluated for the better part of a decade and when he was finally diagnosed with mixed dementia it turned out that one was caused by a vitamin deficiency. Had he been evaluated and treated, they both would have had a better quality of life until his Alzheimer's progressed. He was finally diagnosed during a hospitalization and treated which improved his cognition for a period of time.

My dad's dementia resulted in a fixation on money, paranoia and poor executive function/higher order thinking which led to him losing $350K managing his investments. There is no do-over for this. The loss of income resulting in mom having to sell their home in Florida and also limited the amount of money she had available for home health aides and eventual placement when his care needs became too great for her to manage at home. I suspected he was up to no good with his laptop and warned her to either insert herself in the activity or change the wifi password, but she blew me off. Eventually, he struggled with his passwords and technology in general. I recall getting a late-night call during which he insisted I "contact the google to give him his password back". During this phase, he bought several new laptops complaining "they don't make them like they used to". When I finally did a deep dive into their accounts and found the missing $350K, I also found 6 internet security suites @ $300 each on auto-renew. On the plus side, I did find an abandoned CD worth $90K that had been turned over to the state treasurer. In retrospect, I regret not changing their passwords or dumping a sticky Coke on the laptop. 

TL;DR? You need to get a handle on this. Perhaps it makes sense to return to paper statements and remove the laptop as a trigger. You could create a fiblet about it being at Geek Squad getting an update or repair. Maybe change the wifi password and create a fiblet about there being an issue with the ISP doing work in your area. 

Many PWD do best with a routine. We found dad enjoyed socializing but mostly with people from his past. He time-traveled in the middle-stages and often talked about friends from 30+ years ago. He adored seeing his brother and his old golf buddies but could be crankier with people who entered his life later like his adult grandchildren. We also found it helped to keep gatherings smaller. In the early stages we had a 80th birthday party with 50 people and he had a blast. A few years later he could enjoy dinner for 6 max. Following conversation can get harder and confusing for PWD. It requires a lot of bandwidth and will tire them out. 

HB

Anna2022

Thank you all for your input! I will try to implement some of these ideas ASAP. Thank you again!

FTDCaregiver

Hi Anna - For me, early on with my DW, getting a diagnosis, stable medication, settling finances and fear of uncertainty and isolation were all stress builders.  Don't know your situation but getting a DPOA and diagnosis/med stabilization were first for me to get help in managing her symptoms. Getting help from experts, largely on-line, on tools and techniques to manage both stress and her behaviors was helpful as well.  Eventually developed a close relationship with our bank, set up a trust for my estate, then a trust account to manage DW's SSDI income.  Risky if your DH still has authority over banking, applaud your redirection efforts to steer him away but risk is probably still there of him being scammed or misspending.  You're on the right track, we're all supporting you as many of us have lived through it.

Anna2022

Thank you all for your input! As FTDCaregiver said, getting a handle on legal and financial issues is proving to be a huge stress reliever - nonetheless it's a process for sure... .

Banking: I have access and control of all investments, savings, bank accounts and DH has access to only one with minimal money in that one account (and we now share access to this account as well).  I am still tying up loose ends based on your advice, reading and learning.

Bills: I am now paying all household bills and household tasks and accounts. DH has access to one credit card ... for now.

Websites: I have access to all DH's critical websites/passwords but that could change if DH changes passwords - yes, I know this is an issue. More work to do here.

Internet/email/phone: I'm still trying to figure out how to limit internet and appreciate your warnings and advice. I understand that the risks are great - I'm on a triple fast learning curve. We have programed his phone to eliminate/silence calls from unknown sources - this has helped a lot with unwanted calls! Spam filters for email have been helpful but the scammers are smart - this is an area of concern for sure.

Legal: Based on your advice, I contacted a certified elder care lawyer last month and it was so very helpful to get that input! We have another appointment with lawyers this week for POAs, to update wills and directives, etc.

Diagnosis: DH has been super resistant to getting an evaluation - anosognosia is a real thing. His doctor is aware of my concerns. DH annual medical exam is coming up and I am trying to leverage that into a good evaluation with an expert. I have researched where to get the evaluation.

Stress and mental health: Doing all these things has helped, but really the day to day stress and worry is still there... some moments are ok, some moments I feel like the world is collapsing around us. I feel like I'm on alert, waiting for the next problem to show up or the repetition to start again.  At the end of the day, when I take a moment to take stock of the day, I feel defeated/ scared/ angry/ resentful/ loving/ tender/ sad/ hopeful/ fiercely protective and utterly human. I also I know that DH and I are doing the very best we can. Thank you for helping us on this journey.