Planning trips

LaQuita

we are trying to plan a few trips to see family and it’s very frustrating to my Lo. He has always been the one to plan everything down to the last detail. It frustrates him that he can’t do that now. So he just wants to shut down and go no where, He says he can only see/think about today. He would just as soon stay home as go any where, is this normal?
should I continue to want to go places I can plan everything that’s not the issue it’s him, , not wanting to go and wanting to stay home instead. Please give me some suggestions on how best to handle this, Thank you

terei

My first suggestion would be to forget the ‘we’ are planning. Apathy + the other symptoms you are describing are very common. If you want to take a trip, do the planning on your own, out of his vicinity + the day you are planning to leave, just get him in the car. This is the stage when trips begin to be problematical + I will not be surprised if they do no go smoothly….sorry

ButterflyWings

@LaQuita yes, unfortunately if he has dementia, this is the new "normal". But terei gave you excellent advice on how to handle it. DH has heeded my request to walk with me to the bathroom (as usual), then we made it to the kitchen, I kept chatting on the way out the door, down the stairs and into the uber - and onto the plane. When all was said and done we were in NYC a few hours later. That is much later stages and he did not even question really. Because by then, he did not know where he was even in our living room at home.

Of course I had to do everything else while he was unaware and even asleep which can be exhausting. But the respite break - together - was heavenly. I did not expect him to need less help while away, but more. Yet it was still the getaway I really wanted, and enjoyed.

You just have to really adjust your expectations. Like, having zero expectations is a good idea. I have been 100% willing to get as close as the gate, turn around and drive to our destination instead. Or just go home. That is dementia life. Not his fault nor yours — it just is. Before we got to that stage though, we were homebound for probably 2 years (and not because of the pandemic). DH just flat refused to leave the house. It was hard, though toward the end everyone else was also sheltering in place so we were ahead of the curve.

Welcome to the toughest job you will likely ever have. Sorry you need to be here but know that you have found a GREAT group of folks who are in the same boat and helping each other out, encouraging one another as best we can. Read, post, and buckle up - but keep breathing! You can do it if you choose. Like Terei said, "we" don't plan anymore after dementia shows up. Just throw out the old playbook as it no longer applies. You are in charge now, since dementia cannot run the household without catastrophic results. At our place, "don't ask, don't tell" (me just doing what needs to be done) and very creative answers to my beloved have gotten us through most things fairly well.

Others will come along soon with some good tips and resources too. Hang in there. Your DH seems right on track, unfortunately. Definitely par for the course, sadly. In the meantime…

M1

Hi and welcome. The planning is one thing. The other thing to really watch out for is that large gatherings of people and unfamiliar surroundings can be very disorienting to someone with dementia. So a family gathering that you enjoy may be completely overwhelming to him. you may need family to come to you in small groups rather than the other way around, or you may have to take some of the trips by yourself- though that then raises the question of whether he can stay by himself. It all gets very dicey, unfortunately.

jsps139_

I read a caregiver’s story, and she said, “Any schedule change of his daily routine is the enemy.” That is so true for my DH as well. Our days are so much smoother if we just do the same things everyday.