Does anyone else worry that they are making the wrong decisions?

It is so hard! We can only do what we think is best. I think it would be impossible to go through this and not feel like you had made some mistakes. There is no crystal ball to tell us how quickly things will progress, what that progression will look like or how they might respond to a different living environment. We are making our best guess. My mom was so angry when I told her about the move to Al. She insisted on packing everything herself. I think it was her way of exerting control. It was a nightmare. She had packed cookbooks clothes that didn’t fit…. Once she was there she made friends and I think she enjoyed having her own little apartment. She remained mad at me for months, but when I wasn’t around I think she enjoyed being there. Try not to be too hard on yourself.

Yep, for sure. We make the best of awful choices. I think that is an @H1235 phrase if I remember correctly.

I'm sorry you are going through this. I am glad you found your way here though. We understand.

Sending 💜 strength your way,

Jen

I worry all the time! took me two years to talk my parents into going to AL due to age and moms dementia and dad couldn't care for her on his own anymore. I feel I was 6 months to a year too late moving them. Advice I received during the process was to get them moved before the big crisis hits. I also agree with the way things change day to day and week to week it makes it really hard. One day my mom will be pretty lucid and then turn around and start telling me she's been arrested for robbing a bank! If I take her out to an appointment when we return to MC, it's like the first time she's been there and we have to tour her room and facility!

I worry every single day that I’m making the wrong decisions. If he’s refusing to eat, drink, take his meds or get out of bed, he is prone to falling from lack of hydration, nutrition and muscle strength. It could also explain his agitation. You could have a crisis before any of these Neuro appointments happen. Keep a journal of certain “episodes.” Print them out in very brief form for the doctor on Friday and see if you can get anything expedited.

Do you have POA? If not, that’s your #1 priority.

We make the best decisions we can with the information we have at the time. I suspect all of us have questioned our choices. This is just awfully hard.

As I look back, I remember thinking that I was being pushed to upgrade from AL to MC too soon. I now know that was not the case, and my dad needed MC-level care—not every day, perhaps (although he certainly does now), but many days. It was the right thing at the time.

I believe he needed AL more than a year before we made that move. For a variety of reasons involving other decision-makers, I was unsuccessful in getting that done. So I waited for the crisis—and agonized. And slept very little. The crisis came. I acted quickly when it became possible. That is one decision for which my regret is zero.

I’m on these boards due to my concern of how I might have harmed my parents more than helped them and yes I believe if I could have kept them in a more consistent setting they might be doing better - it’s just so hard to know for sure.

My parents are both exhibiting moderate to severe cognitive impairment but were living in an independent living facility. They were doing well in that setting as they moved prior to things becoming more severe so everything was familiar. The biggest challenge that I saw my parents exhibiting was really a happy hour with wine that was out of control due to their short term memory and inability to know that their “little bits” that they were drinking was much more due to their drinking boxed wine with no real control or tell for how how much they drank. They had no real stopping point and it was such an enjoyable part of their day. Both parents are very physically fit just cognitively challenged. I knew there was an issue when I started getting messages from dad that mom wasn’t going to lunch due to “depression” which I began to associate with possibly a hangover. Mom is only about 115 pounds and hardly eats anything but wine consumption would start early afternoons. Now fast forward to this last month.
Mom went in the hospital for a week due to a bleeding stomach ulcer. She lost 5 units of blood and was really in bad shape. I had to stay with my dad for the week and he was a mess. Couldn’t find the hospital.. thought she had died each day…couldn’t remember where she was the next day etc. Mom came home after about 4 days with strict orders of no wine but that night dad was already trying to fill her glass which I was able to intervene since I was there but she still ended up back in the hospital the next day. Medicine has never been a part of their life so I knew they would be unable to manage the medicine mom would need to let her ulcer heal and then I knew they could not manage the wine consumption so I moved them to assisted living when mom was dicscharged. It’s been a hard move but mom is not drinking and she is getting her medicine but everything else has been turned upside down. I feel the move has increased their confusion and feel bad that I couldn’t find a better way to control their alcohol and medicine management but I was an hour away. They have been so so confused and disoriented since the move and want to be in a house on their farm but I have no guarantees that it would even be a good move plus they haven’t cooked in 4 years nor can they manage medicine. They don’t even remember that mom was in the hospital and have been asking for wine. It’s just been so hard cause I feel that the reasons were petty although I am confident that my mother would have already been back to the hospital had I not intervened.
I’m just trying to convince myself I’ve done the right thing. Their cognitive impairment is real Dads family has a history of Alzheimer’s (his dad, and both of his sisters) so I figure we have a long road ahead of us Moms impairment is worse than dads and I have no idea where it has come from. The phone calls and texts are just a stuggle everyday. Their requests seem so lucid and I feel that I am depriving them of their wishes and best life I am an only child and we have always just had each other so I feel that I am failing them I HATE THIS DISEASE