Looking for advice - even if it's "don't go!" Long back story, sorry.

[2vets]

Looking for honest advice on my dad (and mom) . Back story - I have a 4 siblings. We're from Florida, and my parents started taking us to Disney World way back when it opened and then throughout our childhood. Two or three of us are still pretty addicted and visit regularly.

I need help! Sorry in advance for the long post.

My dad has been slowly developing both dementia and mobility issues. His dementia is still characterized as "mild", but it underwent an abrupt worsening during 2020- some of this was dehydration/nutritional and has improved, but it definitely didn't all come back, and my mom no longer feels comfortable leaving him alone (I agree with her). To be clear, I can sit down and have a conversation with him, he knows who everyone is, but sometimes, he'll tell weird stories or of be unaware of current events. He has some foot issues that have made walking fast or for distances difficult, but he is a former marathoner and distance cyclist, so he still loves to walk a couple of miles a day.

My mom, on the other hand, is pretty sharp and extremely active - and very independent. She unfortunately let the situation with my dad get a little far before she asked for help, so by the time she sought it out, she was pretty desperate to get out and do some things for herself. There were numerous debates and fights and opinions and plans from all and sundry (I won't get into details, but it was BAD. There was not a lot of support for my mom wanting to have a life that didn't involve being at home caring for my dad 24-7. I wouldn't wish that kind of judgement on my worst enemy. I don't love everything she's doing, but I cannot impact her actions or my dad's care by being horrible to her). Many, many months later, my dad's day-to-day care has been settled, and my mom is getting out a bit more. There is still some residual anger and frustration, but it's better than it was.

So - there has been extensive debate about Thanksgiving 2021. 2020 didn't happen, but we're all vaccinated now, and I'm the only one who would have to fly - and this of course all assumes the best for November. Right now, one sister and I plan to be with them if at all possible - I am childless, my sister has a daughter. One other sister won't commit yet and is likely to drag feet for a long time, but I'll bet she'll show up with her two sons, so we have to assume that and plan accordingly. All kids are under 11. My parents no longer have our childhood home, and we've been looking for places to rent that can accommodate all of us - and accommodate the differences in activity level. One option is to rent a house in Orlando (wish we could be onsite, but since we have people not committing, we can't - and we really need the space for this group), as that area is central to several family members and easy for me to fly to. Although my dad many not want to or be able to do much, my sister and I figured we can possibly book a VIP tour (we can take turns sitting things out, and/or basically take a divide and conquer approach during the time we're there). We can get park tickets and then use them or not. Someone can take the kids and my mom and go to a park or something so they can run around and exert all that energy, and someone else can take my dad, maybe do one or two slower-paced things before things get ridiculous - and then go back to the house and hang out.

My mom has made it clear she needs to get out and do something - anything - otherwise we'd rent a beach house and just sit on our butts and eat turkey and watch football. She likes the part-time Disney idea. We need to have a few chats with my dad on successive days to confirm he still likes it as well, but he has always been enthusiastic about Disney - we have great family memories there. But is this crazy? Are we insane? I just have no idea what to do or whether this is the right thing. It has been such a horrible, judgmental, sad year. Is this a good way to start healing while helping my dad AND my mom? Or is it just a disaster waiting to happen?

I'm tearing up as I type this. Thanks in advance for any thoughts or experiences you can provide. Feel free to be honest (but please be gentle!).

 

[Bjkandma]

I think it is possible. You have the four siblings (even if only two decide to go) and the possibility of 3 children, your mom and dad. While I don't fully understand the stage of dementia your father is in, I think a family vacation is in order. I personally would look at renting DVC points and staying all together in a 3 bedroom villa. (it won't be cheap). Getting back and forth, will be easier using Disney transportation.

Regardless of how many adults there are, you need to be in agreement that all will help!! Staying on site would allow your mom to head to a park (by herself or with grandkids). Dad can go to the parks on his good days. I am a firm believer of how important creating family memories and making "special" each day is. This past 18 months or so, we have all learned (or should have) exactly how precious time with family really is.

Just my advice: do whatever you have to, to make it happen. Each day that may be a struggle, you are blessed to still have everyone present. I hope you realize how blessed you really are and start planning!!! You can and will create magical memories for your family. Be sure to take lots of pictures and treasure your time together!!!!

 

[Selket]

I'm so sorry about how stressful this is for you and your family. Your house rental idea sounds good and it seems to me that you could rent a WC for your dad to use in the park which could just be pushed around and hold everyone's bags if he wants to walk. If he would prefer to stay in the house maybe people could take turns going out and doing things around Orlando like going to WDW and someone could stay with him. Taking turns would be ideal among your siblings and let your mom get out and do things. The VIP tours are expensive but I'm sure they'd be willing to tailor things around your needs. I don't know as much about those. Thanksgiving is surely crowded so that's the downside but it's the same for most school holidays and major holidays.

If the parks are too much for your dad (too much stress? not sure if you're worried about the crowds) - you could also have everyone else who wants to - go to the parks and then bring your dad to meet up with folks at one of the Disney restaurants for dinner - like AKL - where you can also wander around and look at the animals - or one of the hotels in the Boardwalk area, etc. Preferably a place that takes reservations so you won't have to wait too long!

If you have more details about what kind of issues you think may not work in terms of visiting the parks with him, etc. that could be helpful. The biggest issue I see is would your siblings be willing to trade off looking after him? Or perhaps bring along an extra non-family friend that would be his primary watcher (and maybe in the evenings that person would have free time or work out something). Ideally everyone gets a chance to go out and have some fun and a chance to spend some quality time with your dad doing whatever most suits him.

**I also agree that on site is ideal if you have the $$$$$ to rent DVC points. If you have drivers and cars you could also consider visiting other Orlando attractions like US/IOA, or go over to the beach for the day, etc. That all depends on the money situation!

 

[TwoMisfits]

Dementia patients don't normally do "well" when not at their home base...add in holidays, stress, activity, kids...this does not sound like it would go well.

If your mom needs to be independent, and you are willing and have no one you need to be with for the holidays, my suggestion would be to offer to stay with your dad for the holiday (keeping or increasing all his in-home paid help, so you're not overwhelmed) while your mom got to visit her other kids and grandkids...or heck, got to go to Vegas/Orlando and take a breather...or whatever she'd want to do for a few days...

It's sort of a "martyr" position, but it sounds like your mom has gotten sick of that position and a break for her would probably make her year...and you don't know how bad your dad has gotten. I know many parents shield their kids from how bad it is...and would you really want the grandkids to find that out on what they think is a vacation?

 

[JennyDrake]

I have been to WDW as (light) caregiver and traveling companion to a senior with dementia and mobility issues. I'm going to agree w PPers - I would do whatever it takes to stay onside either renting DVC or multiple rooms/suites at values. Having easy, straightforward WDW transportation is priceless. I had 3, different trips with Miss M and her son. The first trip, dementia was mild, she was kinda daffy and couldn't piece together much but had a good time. She tired easily (geez, she was 89) and a long midday break would have been better, but when you are the hired help.....

The next trip 6 months later, dementia was much worse. Everything reset about every 15 minutes. She was disoriented and agitated, no one enjoyed it.

The following trip, 6 months later, dementia was better controlled with meds, but she was disoriented, confused and sadly unhappy. She would have much preferred to stay home and be amongst what was familiar.

I don't know the finances, but I would consider hiring outside help to perhaps stay with your dad for a full day at WDW.

One last comment, if what your mom needs is a break and you want a family get together, consider non-Disney - like Gatlinburg. Cooler weather, can spend a day at Dollywood, much less expensive. Just my 2 cents....

 

[2vets]

I really appreciate everyone's responses. The expense isn't really my top concern. We can't get a 3-bedroom DVC at this late date (I looked, that was actually the first place I looked ), and I don't think it's a great idea to book multiple rooms - we need to all be in the same place to support one another.

The reality is that we won't be able to do every day there anyways. My dad was really, really active for a long time, and he insists on getting himself from point A to point B, though the pace has become extremely slow - we're going to have a very tough time convincing him to use a wheelchair. Even if we did a VIP tour, honestly, I don't think my dad would make it through much. My sister and I may well book this and then cancel beforehand. Any WDW days that happen may not involve my dad, when it comes down to it, unless he specifically tells us he wants to go. I just got off the phone with my sister, and we're both so torn. She is a few hours from them and was the only one lucky enough to spend last Thanksgiving with them, and she told me it was excruciating - they're both very go-go-go, but my dad is so much slower - by lunchtime, they'd all be home with the news on, blaring (not good for anyone's health, mental or otherwise!), frustrated for the rest of the day because there was no middle ground. She and I can divide that this year to help with that, but still, we need to be sure we at least select a location with activities. Orlando was going to have Disney but not be a Disney trip, if that makes sense. Maybe a few hours in Winter Park walking around, a rest, and then a dinner at one of the hotels - would be the type of thing we might do. (I should emphasize that we will have two drivers and two large vehicles - my sister lives in Tampa and has an SUV - I'd just go ahead and pay out the nose for a rental - we'd need at least that to ensure we can both take a parent.)

@TwoMisfits, my mom is getting ready to do a weeklong trip with friends in October (this has come under extreme criticism from some family members), and my dad will have in-house care with a family friend. I would have no issue being there for them during the holiday or being the only one, but I don't think she's going to go away again soon - my sibs and I offered to tag team so she could take another trip (though it's an offer she wouldn't accept, let's just put it that way - again, there have been differing levels of approval of my mom's approach, and no one seems to appreciate that she's nearly 80 and is probably scared that she doesn't have long to do things either). I really appreciate your input. All the grandkids have been there and seen him multiple times since this came up so have seen that he's more confused. He's really not bad yet, honestly, the most disturbing part right now is that he's pretty clearly depressed (again, I don't think the grandkids see that - he seems tired to anyone who doesn't know him). I'm so torn. I have confidence that this will not be possible soon, so it's a matter of finding out if soon...is now. I did just have a conversation with him, and he told me on one hand, he wants activities - but on the other hand, he wants to be home. I just...argh .

@JennyDrake - Gatlinburg is a little far for my parents to drive - I live on the other side of the country and would have take probably 3-4 extra days to do this, which would be tough at work, and my sister and my mom in the car for 8+ hours each way is a ticking time bomb!! We may look into nearby places on the coast - but this also falls into the "are there activities and what kind" concern.

We're going to call both parents individually tomorrow and try to get an idea about where everyone stands. I know how lucky I am to have living parents, however sad and frustrating this is. My husband's dad died a few years ago, and he has been reminding me to get out there and help out as much as I can manage - I'm appreciative of that insight.

Thanks, all.

 

[Evita_W]

Just my two cents, but definitely go, keep checking on the DVC, you could also check into to renting multiple rooms (usually cheaper than a 3 bedroom anyway) at a DVC resort and requesting them to at least be near each other. Given the nature of what is happening, Old Key West would likely be ideal, it is a very relaxing resort. There are also great rental homes in the area as well, but do consider multiple rooms, for the same reason you are considering multiple cars, then you can each take a parent if things are going nuts.

I would definitely still plan on going, even if you never step foot into a park, going to Disney World can be incredible. I would work on getting your dad to accept a wheelchair due to the distances involved and it will make it easier on you if he has, umm issues.

 

[Boopuff]

OP I feel your pain. Both of my parents had dementia. My mom would become very confused and angry (downright evil) when she was out of her element. Food also became a big problem, wanting things hotter, familiar foods becoming unedible a big strain on us. My brother and his wife put their heads in the sand and didn't help until it became unbearably obvious. To attempt a trip would imo would require having the assurance of everyone that they'd be there to assist. Don't let the onus of care fall on you! Good luck in whatever you decide and send your mom a hug!

 

[lanejudy]

Having been down this road, my advice is to have very low expectations. Being away from home, staying in a busy home with several others, out of the daily routine, and just progression of the disease can all lead to very unexpected reactions. It may go very well or it may be extremely challenging. Or a little of both.

Some things to think about:

• Dad and Mom presumably live a relatively quiet life at home. You plan to introduce anywhere from 3 to 6 more individuals into his daily "home" life, including up to 4 youngish children. Can dad cope with all those people and their noise and activity in the living quarters? Will there be opportunity for him to get away -- maybe a quiet space, whether that is a room away from the main living quarters or a completely separate space for him/mom. The typical busy-ness and "noise" of regular family living may be too much.
• Does Dad wander? I understand he is independent and likes to walk. Be prepared for someone to be on "watch" at all times if that becomes necessary. Even if it isn't now, it could be in an unfamiliar environment.
• How are meal times? Does he typically eat at certain times? Try to keep to his schedule and usual foods. Restaurants may no go over well, though take-out may work. But be prepared that restaurant meals may be much more rich than he is used to at home, and that could cause digestive problems or even medication absorption issues.
• WDW is C-R-O-W-D-E-D right now, and that likely will be as bad if not worse this fall. Thanksgiving will be the first big holiday since people have felt comfortable to travel, plus the 50th anniversary. Expect even offsite places to be busy.
• Can 1 person manage to adequately assist Dad when out and about? In/out of the car, is he safe in the parking lot or would he need to be dropped off at an entrance? Will he stay with the group, or 1 person, in a crowd or might he become disoriented?
• Are you prepared to help him cope with his expectations? If he liked WDW in the past and has some good memories there, he may struggle with strong feelings if it isn't going the way he would like or remembers. It sounds like he may already have some depression going on.
• You don't mention how long a trip you are planning. If there's any way to try a short weekend trip for him before then, I'd give that a try to see how it goes. Again, out of his normal environment may exacerbate behaviors and/or confusion and/or frustrations.
• Is everyone willing to cut their losses and head home? Or at least one person take Dad home if it isn't working? Expectations should be set with the kids as well.

Good luck. It's a long challenging journey. Spending time with Dad is important, especially if it means Mom can get a break. A trip may or may not be the best option.

 

[HopperFan]

Been down this road, including there being very diverse opinions among family members on acceptance, care, medical decisions etc.

Now I'm going to ask the hard question .... do you all want to do this trip because of your parents love for Disney, sharing that love with you all and wanting that one last great family vacation/holiday and Disney memory? I mean I understand that, I really do ..... I cherish all those smiles and joy in the mid-stages that we lost later. But Disney is stressful in the best of times, add in COVID changes, add in your Dad issues and age, that your Mom will really want to enjoy the parks, that you all might be split up most the time .... and your Dad may not do well with the change from his comfort zone which could mean a sad memory for you all.

Personally, I would plan Thanksgiving where they can stay home, you all who go stay close by, you create some short activities that he might enjoy even if you all just go for a "few mile hike" as a family, maybe look through and enjoy photos/movies of wonderful family time, order a thanksgiving meal to eat at their home stress free, going out for ice cream sundaes ... not sitting and watching football but a week of activities that you will do and he can look forward to without them being too much or too long.

And then maybe plan a trip to Disney with Mom and the Grands, with Dad staying with caregiver again, next year.

We had quite a few weddings happening, and after dragging Mom to a couple where she clearly was not comfortable being away from home, we got her covered and had Dad go to a wedding. He didn't want to leave her but honestly it was the best time he had in years. And I guarantee she was much happier in her comfort zone, not in a loud crowded place.

 

[mamabunny]

@2vets Just wanted to add this...

I cared for my Mom for the last 5 years of her life. She had what was initially diagnosed a "stroke related dementia". In many ways, for a long time she was a lot like the OP's father.

We took her *early* in the disease process to WDW, and it was a whole thing. It was not really the trip we thought we were going to have. And although to this day, I have treasured every moment that I spent with her as she moved closer and closer to the end, I can promise you that the stress that this can add to your entire family as dad's caregivers may not be worth the stress and inevitable heartache that can occur.

Some further questions to ponder:

- Is dad able to handle self-toileting at this point? Is he safe to go alone into a crowded men's restroom alone, wait in line, toilet, clean himself (if needed), wash his hands and make his way to the exit?

- Is he experiencing any catastrophic reactions? Many forms of dementia can experience this, when a seemingly normal, inconsequential event suddenly becomes a HUGE "thing". My mother, for example, became scared of her own feces one night, out of the blue. Before it was over, there was feces smeared everywhere, on everyone in attendance and I spent the rest of the night crying as I washed my mother, the walls and floors and toilet and everything else, and then finally myself. Catastrophic reactions can occur anywhere, anytime, for any reason. We had one because the applesauce looked "weird". We had one because the pencil she wanted for her word puzzle was blue and not yellow. We had one because she didn't want flowers on her nightgown.

- Is anyone in your family participating over at Alz.org in the forums? There is great support there for folks who are loved ones and/or caregivers for dementia patients of all kinds. Knowledge is power - and it's what you and your entire family will need going forward.

- You may want to consider a "trial" - a small, overnight trip to a familiar hotel or Resort first, to see how he does with travel in general. Dementia changes people, and seeing how he does on the trial trip will help inform how the larger family gathering will work.

- Consider staying offsite, but close by... maybe one of the Disney Springs hotels? That gives you the shortest travel distance to the Parks, Disney Springs is close by for shopping and food options, and those hotels tend to be much more reasonably priced, and have options that Disney Resorts don't.

Only you and your family can make the decision to go or not, but the fact that you are seeking the answer to the question "even if it's no" might be telling...

 

[Lilsia]

I was the main caregiver for my grandmother who had developed dementia, and let me tell you, it is HARD. It is mentally and physically hard. To see the person you love deteriorate is one thing, but to have the stress of caring for them is just as bad. I only know what you have said, but I think your Mom needs to be cut some slack. Being in that position makes a person exhausted which turns into anger and resentment, no matter how much you love the person that you are caring for. It is easy for those who are not in the position to judge those that are and to say "I would have done this...", when you really don't know what you would have done if in that position. It is obvious your Mom needs a break and just because your Dad's life is limited because of his illness now, does not mean that your Mom should have to live a limited life too. That is just not fair. You have to think of it in those terms, he has an illness, your Mom does not. I hope that helps understand the side of the caregiver a bit.

Now, as far as going to WDW. I agree with the others that dementia people get very confused, angry, and upset when out of their routine. Of course, it all depends on how your Dad feels at the time. I guess I would plan on everyone being available to him for a visit and ask him how he feels about going to the parks, knowing that he might not be having a good day and decide to stay home. So plan for all situations.

 

[starry_solo]

I'm not so sure it's a good idea for the reasons the other posters stated above.

 

[elsbit]

My FIL has Lewy Body Dementia, so I can relate to some of your post. I would not do a Disney trip. I agree with Hopperfan.

 

[Bete]

First let me say that the average trek through a Disney park is 6 miles. This includes being in attraction lines. My thoughts would be that your dad won't handle a whole day without using a wheelchair. Right now, there are not a lot of shows; most older folks like the shows more than rides. Getting in and out of rides can be difficult; you mentioned your dad has mobility issues. You would need to make sure someone capable is before him to assist and someone behind him as well in case he loses his balance or whatever. This has to be done getting off the ride, too. You may have to direct him to hold on in a certain way to get in and out of a ride. If he doesn't go on a ride then someone has to babysit him. If you expect this to be on your mom I wouldn't go. At 80 your mom may need assistance on the rides, too. Can your mom walk a whole day at the parks? If not you may want to consider a scooter for her. Eating will take longer, too. Getting finger foods may help like a sandwich or pizza. Everything will be slower; will all of you have the patience for it? Will your parents require a nap? That will require extra commuting to the parks. I would have a schedule for restroom stops like every two hours. There are companion family restrooms and I would use them. Definitely use the restroom before and after eating any meals or drinking. Make sure your parents stay hydrated. You may also have to deal with medications through the day for your dad and mom. For example, some blood pressure meds are done mid day.

There are private companion services for hire. They will babysit your dad. You can even get him a companion for the park but you will pay them an hour rate, park admission and their food. Personally, I wouldn't go if I required these services.

Next, there are safety issues. We have used battery operated door alarms for outside doors. We have used portable battery operated motion sensors, too for the bedroom. I feel this is necessary when everyone goes to bed. Many dementia people have a tendency to wander. Using a tracking device is important, as well. They have GPS built into shoes, now. There are watches, too with GPS but those can be easily removed if the person doesn't want to wear one.

How easy is it for your dad to get out of bed to use the restroom? You may need a bed rail for assistance. It might be beneficial if he has a hard time getting out of bed; because, then he won't be a flight risk. In that case use bed pads, if necessary.

 

[2vets]

Hi, all -

First, thank you all so much for your frank responses and for your kindness and sensitivity. I'm used to booking quick trips to Disney with no consideration for any issues other than, "What time is dinner?" and "Can I score extra FP+'s?" The situation is stressful alone, and the logistics of this are complex and scary!

My dad's dementia isn't bad right now, but no one wants him to be alone because we have all witnessed a thing or two that foreshadow what's to come. The plan had been to rent a huge (5-6 bedroom) villa with pool offsite and take 2 cars in when we'd go, with one car being the "head bacck early" car. Two full sets of people to divide and conquer. But...something @lanejudy said stopped me in my tracks. Dropoffs/pickups. Dropping off in the morning is no big deal - but it would be a 2-person job to get Dad back to the villa because we'd be offsite. And in the end, how enjoyable is it to have half the day be schlepping back and forth and being upset because of crowds? Not.

That's the other part - Thanksgiving crowds. I was there in April, and it was pretty stupid. I don't even want to think about the end of this year near a holiday. I would individually never venture to Disney then, even without covid. I worry about my dad being in a wheelchair for the first time in the midst of a packed holiday crowd - that would be stressful and incredibly disorienting. He'd not recognize the parks from that vantage point.

I had a long talk with my mom and my sister, and for the holiday, we're going to book a villa about 70 miles from my mom and dad's house in a familiar area, but one that is walkable and offers a variety of activities.

Discussion of this trip, however, has sparked some interest. My mom is going to start introducing my dad to the wheelchair thing. We're going to book a tentative long weekend at the end of Jan/beginning of Feb next year - onsite, large villa, and if the wheelchair idea goes well, we can do a scooter rental. VIP tour if we can get one. Two sets of siblings to get dad back and forth for mid-day break, but most of us like the mid-day break anyways. I did tell my mom that we can see how things are before then to decide - but that if SHE wants to go, I'm happy to fly on out and pound the pavement with her (twist my arm, right?) anytime.

Anyways, thank you. Big hugs to all of you.

 

[Evita_W]

Right now, there are not a lot of shows; most older folks like the shows more than rides.

This brings up a very valid point, if your parents are more into the entertainment than the rides, there are better choices for places to go than Florida, although I don't know what it would entail for you. The parks that I know have a lot of entertainment at present are:

• Knott's Berry Farm - Buena Park, CA
• Silver Dollar City - Branson, MO
• Dollywood - Pigeon Forge, TN

All three of these parks presently have an insane amount of entertainment, I know Knott's will at Thanksgiving time as well, I do not know about the other two come Thanksgiving though.

I would say Dollywood would like be the easiest transportation wise, you would end up needing multiple rooms, but if you stay at the Dreammore resort, they provide transportation to and from the park.

 

[2vets]

This brings up a very valid point, if your parents are more into the entertainment than the rides, there are better choices for places to go than Florida, although I don't know what it would entail for you.

My parents live in North Florida, only a couple of hours from Disney - that's why we went so often when I was growing up, pretty much every year. At any rate, this is a big "maybe" right now for a less-busy (presumably) time next year. We'll see how the holiday goes and whether Dad is cool with being in a wheelchair for part of the day. Thank you!

 

[mamabunny]

My parents live in North Florida, only a couple of hours from Disney - that's why we went so often when I was growing up, pretty much every year. At any rate, this is a big "maybe" right now for a less-busy (presumably) time next year. We'll see how the holiday goes and whether Dad is cool with being in a wheelchair for part of the day. Thank you!

One thing I can't stress enough going forward - regardless of where y'all are in the world, make sure that he is *always* hydrated. Dementia folks can actually turn up with "silent" UTIs and it can make it look like his dementia has taken a sudden turn for the worse. The excitement of returning to Disney, travel in general - even the hubbub surrounding events like the holidays can sneak up on caregivers, and this is very common.

And I hope you can remember this also... I cared for my Mama in my home for the last 5 years of her life. During that time, I watched her decline, held her at night when she was scared, wiped her after she toileted, washed her hair, her body and her clothing. I fed her, and I indulged her every whim that I could during that time.

It was like watching a slow motion train wreck. I could see the inevitable outcome, but could not turn away. When we got to the end, and she just kept having "mini" stroke after mini stroke after mini stroke, it was horrible, and frightening and heartbreaking.

What your mom - and your entire family is going to go through in the future is going to be some of the most difficult road they will ever travel. I know it will be difficult for you too, but remember that you Mom is losing her best friend, her husband, her love. Support her any way you can, and rally the family around her to make sure that she doesn't lose herself, even as she loses him.

Alz.org forums saved my sanity during that time; everyone there has either walked the path ahead of you, or is somewhere along the trip with you and your family. Use all the support, advice and information you can find; you will be glad you did after it is all over.

(((hugs)))

 

[2vets]

One thing I can't stress enough going forward - regardless of where y'all are in the world, make sure that he is *always* hydrated. Dementia folks can actually turn up with "silent" UTIs and it can make it look like his dementia has taken a sudden turn for the worse. The excitement of returning to Disney, travel in general - even the hubbub surrounding events like the holidays can sneak up on caregivers, and this is very common.

And I hope you can remember this also... I cared for my Mama in my home for the last 5 years of her life. During that time, I watched her decline, held her at night when she was scared, wiped her after she toileted, washed her hair, her body and her clothing. I fed her, and I indulged her every whim that I could during that time.

It was like watching a slow motion train wreck. I could see the inevitable outcome, but could not turn away. When we got to the end, and she just kept having "mini" stroke after mini stroke after mini stroke, it was horrible, and frightening and heartbreaking.

What your mom - and your entire family is going to go through in the future is going to be some of the most difficult road they will ever travel. I know it will be difficult for you too, but remember that you Mom is losing her best friend, her husband, her love. Support her any way you can, and rally the family around her to make sure that she doesn't lose herself, even as she loses him.

Alz.org forums saved my sanity during that time; everyone there has either walked the path ahead of you, or is somewhere along the trip with you and your family. Use all the support, advice and information you can find; you will be glad you did after it is all over.

(((hugs)))

Thank you for this. Several of my siblings have treated my mom as a villain, and it’s been infuriating. She has always been independent. She raised us that way as well. This has been happening, slowly… add in covid lockdowns, and she has been going insane. Of course! She isn’t uncaring, she’s just maxed out. One sister has been horrified that she won’t do everything for or with my dad. It just…isn’t a one-person job. And he’s still doing quite well.

Also, thanks re hydration - this played into part of the initial worsening, which was scary but dialed back quite a bit with appropriate diagnosis of dehydration/uti. He has water with him at all times now, and drinks it!