Early Onset Advice?

I’m not familiar with early onset, I just wanted to at least offer my sincere hope that answers/ideas come your way.

My DH also has early onset of something, still no solid diagnosis of any particular dementia, so I went through him causing issues at work, being unable to complete assignments, etc. A few things that are similar to your situation. - 1) he is in his late 50's also; 2) any illness or infection makes his cognitive status deteriorate and it may or may not return to baseline when he feels better; 3) we want to travel too but I'm not sure it's a good idea any more. During my DH's last hospitalization I hired a care manager to have him evaluated for assisted living and she told me that early onset usually (but not always) progresses quicker than getting dementia when older.

I took a trip with DH in November and after 3 days there he no longer wanted to leave our room to do anything. I think he found it was too overwhelming to be somewhere other than home and be around a lot of new people. We had been to the exact same place the previous May and he was able to enjoy that vacation. We are supposed to go on a cruise in a few months and I am seriously considering cancelling the trip because I am not sure how he would handle overseas travel even though he says he wants to go on the cruise. Based on what you posted I think travel might be very difficult for your DW.

Dear husband12,

Ive been caring for my husband full time for almost 6 years and he has had memory impairment for probably 10 years. I currently direct practically everything he does. We have made many RV trips together since the 90s. I recognized that if I wanted to continue this lifestyle I would need to take over everything; planning, prepping, driving, tow hook up, navigating and mechanical troubleshooting. I’ve managed four 5 week trips of about 3600 plus miles in the past 5 years. Last year I didn’t take the rig out, but I may try another trip this year.

The things I learned doing this all on my own are:

1. Never trust your spouse to help with very much. I did major damage to the side of the rig when I trusted his input as to if I had enough clearance when pulling into a gas station. I have a 40 foot diesel rig and I tow my Jeep so it is not easy.
2. It is very challenging to be both driver and navigator.
3. Most trips involved some kind of mechanical breakdown, hydraulics, fuel pump, water pump, wind damage to slide outs, etc. I discovered my DH hadn’t had much maintenance done in the past so I dealt with the repercussions. It was frustrating to not have anyone to bounce questions off to get a second opinion. It’s all up to you.
4. Your LO with dementia may have trouble using public restrooms if there are codes to get in. I was outside with the dogs and I finally asked someone to help him.
5. My husband no longer recognizes our home as where he lives much of the time, and sometimes thinks we’re in the RV. He has similar issues when traveling in the RV. As long as I am nearby, I am his anchor. However, he doesn’t always recognize me as his wife. I could be his sister, his mom, his cousin or some cute 35 year old brunette (which I am not).

I’m hoping to downsize to a much smaller RV at some time soon because it can be overwhelming to do these trips . They can be stressful and not as enjoyable for me. Once I’m parked for a few weeks, only then can I take a big breath and relax.

Please speak with a CELA as soon as possible. www.nelf.org I wonder if there is any possibility to recover possible work/retirement benefits despite her resigning since she clearly was not cognitively able to make a good decision at that time. Dementia is a very expensive disease (understatement) and now is the time to be sure your DW receives everything she might be entitled to.

Also, though my DH was not early onset (meaning younger when dementia strikes), due to our significant age difference I became a spouse caregiver in my mid-to late 50s. So, like you, some of my best years are now a horror story and I am so thankful for this forum which is the best, most knowledgeable resource that exists. FYI, my DH's neuropsych directed us here on diagnosis. Best thing he ever did, aside from prescribing Seroquel to quel the hallucinations and delusions that are part of this journey.

It is a terrible feeling to become an Alzheimer's widow/widower at any age, but late 50s-early 60s is especially sobering, unexpected, and heart-wrenching. Buckle up. And keep posting here. There is lots of wisdom, freely shared. I'm so sorry for you and your LO.

The last trip I took with my husband was with another couple. He needed watching because he could get lost coming out of a public restroom if I was not outside the door watching for him. He had lost all sense of direction and had no awareness of his surroundings. I realized that if I had gotten sick on that trip my friends would have been tasked with watching him and I couldn’t ask them to ever do that. If I had to go to the hospital the staff there would not have been able to give him a 1:1 sitter as he was not the patient and he would have wandered away and gotten lost. The stress of a trip outweighed the benefits. Now that he has passed away I am free to travel. I just wish he could have taken some of the trips with me.

My dh was diagnosed at 58 and retired suddenly the same month. The following year we took a cruise he had planned for March 2020, and had been looking forward to for years. The cruise went well, but it was more like caregiving than a vacation for me. He had a great time, and I had an ok time.

He couldn't handle dining in the main dining rooms, because he couldn't manage the uncommon terms on the menu or the slow multicourse service. I had to stick with him at all times. I could leave the cabin if he was asleep, but the one time he left the cabin without me, he got lost.

I'm so sorry @husband12 early onset is a bear. My sister was diagnosed with it at age 59 (she's 64 now). She has Alzheimer's and Frontotemporal dementia. It can progress blindingly fast. So yeah, get all the legal ducks in a row.

I agree completely with @ButterflyWings - take the car keys away. Make them disappear. I generally agree with everything that others have posted as well.

As far as trips go ... if there's some place the two of you really want to visit, I'd do it as soon as possible. Peggy (my sister) wanted to go to Italy, that was her bucket list item. We made it happen, but we did it as a cruise so that she'd go back to the same room every night. I left nothing to chance on that trip. Even so, I agree with @sandwichone123 it was no vacation for me and significant other. Peggy loved the trip though and it made her so happy. So, in spite of the work and hardships, if I had to do it all over again, I would. As I look back, I'm not sure we could have done that trip if we had waited even six months down the road.

husband I hope you get to do the RV'ing. Re the iPad: it's worth noting to be careful about her internet access, you should probably monitor her browser history if she's actually getting online with it. Monitor her emails, she could easily respond to a scammer and you might not find out unless you are watching. I came home one time to find my partner on the telephone with "Microsoft" having just granted them access to her hard drive. That was the end of her computing days. If your wife is just playing games on it, that's another story, but the internet threat is very, very real.

I know, it's very hard. Probably harder on you though. Hopefully she'll be oblivious, if not now, soon. Small mercies. My partner has forgotten all of our personal history and most of our family and friends, but she has no sense of time. She told me yesterday she was not done building houses (her profession) and that as soon as she found her truck she was going to visit her mother in Texas (dead since 2001).