Does the sneaking around ever get easier?

Stori

Tonight my LO shared a post of men in tiny speedo swimsuits on Facebook to his 500~ friends.  He doesn't understand Facebook anymore but loves to sit and watch the videos of steam engines. 

I waited until he was in the bathroom and snuck in the bedroom and unlocked his phone and deleted it. 

I feel like a horrible person. I just don't have spoons for a confrontation and also people on Facebook are asking me if he's okay. 

harshedbuzz

Stori-

Social media and dementia can be a dangerous combination. If he doesn't understand Facebook, it's best to change his password and keep him off.

IMO, there comes a time in dementia when access to the internet in general is just a bad idea.

So often we think of dementia only in the context of memory loss, but there are so many more moving pieces to the situation. One issue seen starting fairly early on is the loss of a social filter which can allow opinions that previously would have been the sort never uttered aloud to be shared with little discretion. While it could be he shared this by accident tapping on his phone, it's entirely possible he wanted to share in the moment either because he wanted to ridicule the men in the budgie smugglers or because he found them appealing. 

You can find hours of steam engine content on you tube- Dynamo Productions, Big Jim Video Productions, Penn Rail Videos, Poster Fan 2105- are a few my son mentioned. (yeah, he has Aspergers)

HB

BassetHoundAnn

Don't think of it as sneaking around, but rather that you're doing what you need to do in order to protect your loved one. 

As to your question does the sneaking around ever get easier? Yeah it does. Very quickly in fact when your loved one reaches the point where they can no longer comprehend your words or actions or what you're doing to protect them. 

When I started caring for my mom 2 years ago I felt a tremendous, oppressive guilt about the "sneaking around" as I took over her affairs, which included clearing out and selling her house, moving her to assisted living, and took her to doctors when she did not want to go to doctors. But the guilt faded and at a certain point it was clear she was living in her own reality and had no idea what was going on, not to mention she lacked the ability to comprehend words spoken in her presence. 

So yeah it does get better and the feelings of guilt vanish. Good luck. Hang in there! It's a tough road.

odowd

Stori, I can relate. As a long-distance caregiver, my mom's decline was most obvious to me (and at least one friend) on social media: posting status updates that looked like google searches, commenting on a photo from my vacation and then hours later asking if I was still in Florida, etc. 

I also felt guilty about the "sneaking around" when going through all the POA steps with my mom, adding myself to her bank accounts, closing out accounts, using her funds to pay the CELA, etc. As Basset says, you have to remind yourself you're doing what needs to be done FOR them, not TO them.

The guilt does begin to wane, but for me it's been a slow process. My mother is in a SNF and it hits hardest when she calls crying saying she wants to go home, and it hurts my heart to think she never will. But then I remember there are things I can't make better no matter how much I want to, and that what I'm doing for her now is what is best for her overall health.

PickledCondiment

Stori- echoing other posters, you're not sneaking around, you're taking the proactive, aggressive stance to protect your LO.  Never apologize for doing what needs to be done to protect a vulnerable person.  I made the deliberate, conscious decision to take control of my LO affairs (medical, legal, etc) and I have no guilt whatsoever.

oehlsena

For me it has gotten easier as each day it is proven again and again that they NEED assistance and that they are getting the best care possible at this time. The inner voice that asks for a miracle cure can be so loud.  It kind of helps me to think of it in the sense that we all come into this world as crying, naked babies, and that towards the end of this life we're apt to regress in a certain sense back to how we are when we are young, in the full circle sort of way. There is no cure for Alzheimers right now, but I have learned so much about taking care of the disabled and vulnerable from my LO that I am thankful for that much!

Arrowhead

You have to do whatever is needed to keep him safe. Remember that you are working with a broken mind that needs all of the help it can get. You can't feel guilty for doing what you need to do. You are not a horrible person for doing what needs to be done.

harshedbuzz

Stori-

Maybe it would help to reframe this if you are the sort of person who tends to think in black & white/right & wrong.

Your job is not being the well-behaved and honest daughter, your job is to keep dad safe in a world he can no longer navigate safely with a diseased brain. 

HB