Prepared for so much EXECPT every new symptom my Dad has.

ltbub0418 · July 14

My DD stage 4 has been doing really well. He adapted to the lifestyle changes, the MIND diet. His MRI & bloodwork results are encouraging. He wanted to take a trip with me to see my daughter in Law School (it’s always been his dream to have an attorney in the family) we live in PA she is in IL.

The plan was to fly out there. My Dads career was in the airlines so he was excited for the trip. The trip was excellent. He was beaming with pride, tearing up at times. Laughing a lot…it was so nice to see. Then out if the clear blue, for no major reason at all, this disease found its voice & he had (what I now know was a catastrophic reaction.) He began to get irritated with everything around him and became extremely verbally abusive to me in front of my daughter. Needless to say my daughter was really scared but thanks to this group and the book The 36 hour day somehow I handled it.
Fast forward to being home and I can see the damage that the trip did. His brain is struggling harder than it was before the trip. The odd thing is he has nothing but good feelings and memories of the trip. Which for him is great but now he wants to go see other family members 5 hours away and I just don’t think it’s safe anymore. My family is not having a good reaction to me protecting him & I honestly don’t care. No one is helping me at all. They don’t call to check in, nothing. I’m his sole care partner. I have created my own support system outside of my family.
Has anyone else experienced anything like this ???
Thanks so much.

So based on his

pamu · July 14

Yes, I've definitely experienced this. Family sometimes have NO IDEA what is going on because your dad may present well most of the time. I took my mom's twin sister (88YO) to see her at her MC this past Saturday and it was the first time she really saw my mom's delusions and agitation. My mom has had issues for a long time but it was the first "shocking" visit for my aunt. All the other visits went well because my mom really rallied during previous visits to cover up. My aunt and I discussed the visit after and I even got a phone call from her that night questioning my mom's care and goings on at the MC because she found it all upsetting. I had to break it down for her and explain why and why not things are happening. I had to tell her that mom can't leave MC for visits because she is extremely exit seeking. Mom tried to escape three months ago and things got really ugly and mom was brought to the ER. She wants us to hire someone to take my mom out of lockdown daily and bring her to the courtyard for an hour or two. I hear it from the social worker that mom refuses all the time when they ask to bring her. My mom is at the stage that whatever solution we come up with to enrich her life there it gets refused. I have to say that she is involved with my mom as much as she can be so we appreciate her thoughtfulness. Her other siblings have not really reached out or visited lately. For other family members that have opinions who don't help - you may have to push back and tell them to help out or else zip it. LOL. Can the family members 5 hours away come to him for a visit? He probably wants to go on another adventure but it may do more harm than good. Maybe try to divert the conversation when he brings it up for now. It probably took a lot of his cognitive reserve to function well on the trip, so when he got home he regressed. I'm glad you have support and were able to handle a difficult situation.

ARIL · July 14

Good for you for being prepared and managing the catastrophic reaction on the trip! And please give yourself grace about doing the trip at all. We don’t know that our PWD can no longer handle certain things until we find out somehow.

Now that you know, you will adapt. That’s what this journey is like. And you know better than anyone what your dad can and cannot manage. When my dad (w/ALZ) asks about trips, often to see people long deceased, I kick the can down the road: “Sure, we’ll plan to go when it’s not so hot/cold/rainy; I get a vacation from work, etc., etc.” Occasionally I promise specific dates: “Next week/month.” The pressure is usually relieved in the moment, and the conversation is forgotten until next time. My dad is further along in progression than yours, but just fyi for later on. The “therapeutic fib” is a thing in dementia care, but I like to see it as improv. The goal is to provide reassurance and comfort. I see you, I hear you, I want to help.

Yes, family… Many do not know, do not see, badly want to fantasize that this isn’t real, isn’t that bad, is just normal aging. You just have to make the best decisions for your dad, explain to those who need to know, and take the consequences. I’ve done that, for sure. I have support of some family, none at all from others, and active hostility from a few.

Invite family to make the 5-hour trip themselves. If they can’t/won’t, it is still the case that your dad’s well-being matters more.

Wishing you the best.

pjasso · July 14

https://alzconnected.org/discussion/comment/277315#Comment_277315

pjasso · July 14

I'm sorry you are going through this.
Yes, I'm learning, "kicking the can down the road" is the only solution. I've learned or am learning, not to say, "no", but always say "yes", or "ok", or I'll take care of that" or "yes, we can plan that". The disease doesn't permit her to have a timeline, so kicking it down the road works.

I'm glad the first part of the trip was good for him and I'm sorry it turned out the way it did. I just took my mom on a 4 hour drive, overnight trip, and as much as she enjoyed visiting her friends, the trip itself was too hard, spending the night in a hotel- I have to say, that was our last trip.

H1235 · July 14

If you just got back, you may even find that after her is back to his normal routine for a few days (maybe even a week) he may bounce back to where he was before the trip. Difficult family is tough. My brother has made things so much more difficult. I find it’s as difficult to try and reason with my brother as it is to reason with mom that has dementia. My uncle calls and talks with mom every day, which is nice. But I don’t think he really understands and if he does, I don’t think he knows best practices and how things should be managed. He tried to tell me she could be cured with special gummies 🙄 and described her facility as a jail. Thankfully he isn’t pushy and usually keeps his options to himself. I don’t even try explaining why she needs to be in a locked facility. Sometimes you are just not going to get through to them and you have to recognize when to give up trying (or you will just make yourself too stressed). I would just tell the family another trip would not be good for him. If they get mad, oh well.

Prepared for so much EXECPT every new symptom my Dad has.

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