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

[TwoMisfits]

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!

My family was the opposite when my granddad had dementia (he was late 70s). My grandmom couldn't imagine not having him live at home with her...but then my dad died, and it was just my grandparents and my 2 aunts (and their families). My grandmom could barely handle the grief from my dad dying, let alone also care for her declining spouse...so she put him in a memory home after months of "encouragement." (This was not cheap, but they could afford it with my aunts' help). He did not live more than a year after my dad's death, but he did live well and happily...and my grandmom was there every day with food and company...and by not getting overwhelmed with his care, she lived another 16 years, happily loving all of her kids, grandkids, and then great grandkids.

I'm just saying - it's okay for your mom to also say she can't handle the situation on her own anymore...or even at all...

 

[Lilsia]

It just…isn’t a one-person job

This is EXACTLY it! Most people don't understand how caring for someone like this is 24 hours nonstop. It is extremely exhausting both mentally and physically. I hope that you can help your siblings realize this. My family was the same way when my grandma declined. They felt that I should be the only one to take care of her while I also had children at home and a job. It is impossible. They just don't understand. With my grandma, she declined in steps. It was not a slow decent, but would be fine for a while, then one day she would wake up and be much worse, and that was her new normal. If you can have a doctor diagnose him with dementia, then Medicare can provide a bunch of free services, including having a nurse come by a few times a week. They also provided a free use of a medical bed, incontinence supplies, someone to come bath them.

 

[mamabunny]

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!

No... your Mom is *not* uncaring. She's *grieving*. And your dad is - as it should be - her focus. You and your sibs (you are *so* lucky to have siblings; I had to go it alone, with support from my family) can help her keep that focus, on making your dad as happy and comfortable - and SAFE - as possible.

The goal is to arrive at the end with as few regrets as possible.

Hang in there (((hugs)))

 

[DL1WDW2]

I experienced this process with my mother and would not wish it for my own children…even tho Iknow I am exactly like my mother. And expect this.

I am currently in process of preparing: Getting rid of “stuff” and organizing the keepsakes (mostly Disney). And just sold my car because it was hardest thing to take away the keys from my Mother…also traffic is extremely dangerous currently in Orlando … and making sure all legal processes are current …My husband passed away unexpectedly leaving a huge mess for me. And decision to stop medical procedures was agreed upon with our 2 children fortunately…

Anyway the most important luxury I have purchased knowing my heart and those final years…was a DVC membership at BLT…At least my family knows I can sit in the room and look out the window . I have already told them Not to drag me into the parks in a wheelchair because it about destroyed my back pushing my mother for many final visits. Disney is not flat and No shortcuts. BLT is unique or perhaps the Contemporary room w/ view because of the ease to find enjoyable ways to do Disney without really doing Disney…

Perhaps just your parents secure a reservation and others stay nearby and “visit” your parents at different times during the day. This will allow your mother to get away also. Disney is about the safest place . No other location in the World is monitored as closely and emergency assistance on site 24/7…
And the one place to actually enter? My choice would be Epcot…just to watch the movies in each World Pavillion and then call it a day to this Disney life.

 

[DL1WDW2]

Thanks mama bunny.. That was not easy to write.

 

[2vets]

I’m so grateful to all of you for sharing your personal experiences and insight. I was nervous to post my question, and you’ve all been so kind and caring. That means more to me than I can say. This has been truly eye-opening for me as well, seeing the decisions to be made and incremental differences - I’ve started thinking about DH and I, and where we might move when older. He doesn’t have dementia in his family as I do (ours is mainly men, but I’m still nervous), but he’s 11 yrs older than I am. We plan to locate a place where we can get everything needed as we decline so as not to place this pressure on others - I’ve started funnelling quite a bit more into my retirement - something I realize I’m so lucky to be able to do.

I’m very fortunate in that my parents have the resources to get any care they need or want. The biggest hurdle has been the disapproval. I wish I were closer, but at least I can work flexibly more now than pre-Rona. I can visit multiple times a year and work from there.

I know my mom would love Disney now, but I’m still very back and forth about Dad. I think it can be done well, but I kind of worry that there would be so much arguing that it might be plum exhausting and stressful. With everything going on now with delta, the timing is poor, as well.Not sure how that will play into a weekend test trip in 2022. In the near term, we have a great and huge house that we’ve rented, most grandkids are coming, and it should be a lovely holiday.

Because I have a problem, of course, I booked 2 solo days at Disney on the way to see them. Whirlwind of holiday AH and Remy rope drop.

 

[mamabunny]

I experienced this process with my mother and would not wish it for my own children…even tho Iknow I am exactly like my mother. And expect this.

I am currently in process of preparing: Getting rid of “stuff” and organizing the keepsakes (mostly Disney). And just sold my car because it was hardest thing to take away the keys from my Mother…also traffic is extremely dangerous currently in Orlando … and making sure all legal processes are current …My husband passed away unexpectedly leaving a huge mess for me. And decision to stop medical procedures was agreed upon with our 2 children fortunately…

Anyway the most important luxury I have purchased knowing my heart and those final years…was a DVC membership at BLT…At least my family knows I can sit in the room and look out the window . I have already told them Not to drag me into the parks in a wheelchair because it about destroyed my back pushing my mother for many final visits. Disney is not flat and No shortcuts. BLT is unique or perhaps the Contemporary room w/ view because of the ease to find enjoyable ways to do Disney without really doing Disney…

Perhaps just your parents secure a reservation and others stay nearby and “visit” your parents at different times during the day. This will allow your mother to get away also. Disney is about the safest place . No other location in the World is monitored as closely and emergency assistance on site 24/7…
And the one place to actually enter? My choice would be Epcot…just to watch the movies in each World Pavillion and then call it a day to this Disney life.

If you are genuinely concerned that you will need a wheelchair down the road, but still might want to join with your family for small portions of outings, there are power chairs - so that no one has to push - that have "attendant controls" or joysticks that can be moved from the standard position to one that is handy for a person who is walking with you. That person then controls the chair for you; all you have to do is sit, and enjoy your time in the sunshine at Epcot (my personal favorite place in the whole world for people watching!) The chair that I use has such an (optional) feature: the Fold & Go; it's made in America, and the entire staff there uses chairs, so they understand the importance of comfort and ease of use. Additionally, the chair in total only weighs 50 pounds, so most (younger, healthier) folks can lift it when folded into/out of a vehicle. Just want you to know that you may have options in your future that you have not had the opportunity to consider!

And know this: Many of us are walking a path similar to yours. My own path lately has included cleaning out generations of clutter, and trying to figure if it is best donated, (a few things to local museums and the local historical society - the result of the being the caregiver for 5 generations of stuff) sold, given to friends/family or thrown away. I am emotionally wrung out from the procedure, and we are not even halfway done.

We (my hubby and I) have also been updating our wills and looking at what to do about certain assets, etc. We have been prompted by the sudden death of his father last January; his dad didn't leave a will, or any papers to indicate how he wanted his affairs handled, and how his 5 children should proceed. My husband wants to insure that no one ever has to go through that on our behalf.

I am an inveterate planner, and yet all of this has been difficult. From the perspective of a younger person, it seems logical, and easy - just go to the attorney's office, and get it done! But when you have reached a certain stage in life, it becomes fraught with emotions, and memories and meanings that cannot yet be understood by those who have not made as many trips around the sun; our life experience "seasons" and colors our reactions to these seemingly ordinary events and decisions.

It is tempting to give in to sadness during such a time, however I continue to try and see the positive side; no one will have to worry on my behalf, because I will have left everything as cleaned up and tidy as I can!

Plan for your family's future - both as caregivers to you, and for their life past yours, but then don't forget to plan for *yourself* too! Make sure that *you* have the tools you need (like a power chair maybe?) to do the things you might still be able to do. No one can predict the future; her doctor told me that my mother would not live 18 months when we moved her into our home. He said that she would lose "everything", but she was still able to play the piano until just days before her death, and loved her adult coloring books and her colored pencils that she also used daily. Her life was indeed different than she had wanted it to be, her world was smaller, and slower than ever before. But she *lived* every day to the best of her ability, and in the end, she taught me not just how to be a good human, but also how to die with dignity, and with as few regrets as possible.

We eat peanut butter sandwiches on the "good" china now. We don't keep things like that "for a rainy day" anymore, because we learned that sometimes it just sprinkles a little every day until you are gone...

 

[Allison Joy]

I don't have much to add to what has already been said, but just want to say that, as you can see, there is a whole community here who has dealt with a close family member with dementia. I lost my dad in Dec. 2018 to Lewy Body Dementia. It is such a hard road. I guess I'm mostly speaking for myself here, but I think others who post here would agree. We are a community here on this board, so please know that most/any of us who posted here would by happy to answer questions for you (if we can) be a sounding board, be here if you need to vent, a listening ear, or just be able to talk to someone who's been through it. *long distance hug* (or whatever form of affection you'd accept from a stranger on the internet. We know its hard, and you don't have to pretend it's not.

 

[ctl]

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.

Sounds like an excellent solution Best Of Luck.

 

[ShannyMcB]

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.

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!).

I can't offer much advice on travel but might I offer one on dementia? When I saw your quote about your dad walking it made me think of recent experiences with my mom. I moved her and my dad into a nursing home this spring, managed to keep them home until they were both vaccinated but it was tough. They were a hot mess and I'm an only child...let's just day covid was way down on my worry list in 2020.

Anyway...check out companies that provide those medic alert buttons. Many of them now are offering products for mobile seniors that will work outside the home. They have to be charged constantly which is a pain but they make locating someone who is potentially lost very quick. Cell phone triangulation can work well but these products are great. Something to consider to give you and your mom piece of mind.

And massive hugs for your mother. I got a ton of judgement from family and friends...it sucks. Talk about making a bad situation worse!

 

[2vets]

I can't offer much advice on travel but might I offer one on dementia? When I saw your quote about your dad walking it made me think of recent experiences with my mom. I moved her and my dad into a nursing home this spring, managed to keep them home until they were both vaccinated but it was tough. They were a hot mess and I'm an only child...let's just day covid was way down on my worry list in 2020.

Anyway...check out companies that provide those medic alert buttons. Many of them now are offering products for mobile seniors that will work outside the home. They have to be charged constantly which is a pain but they make locating someone who is potentially lost very quick. Cell phone triangulation can work well but these products are great. Something to consider to give you and your mom piece of mind.

And massive hugs for your mother. I got a ton of judgement from family and friends...it sucks. Talk about making a bad situation worse!

Thank you for all of this!!! I have research to do.

 

[2vets]

I just saw all of these responses. I’m beyond grateful for your support and suggestions. Thank you all so, so much.

 

[ShannyMcB]

And know this: Many of us are walking a path similar to yours. My own path lately has included cleaning out generations of clutter, and trying to figure if it is best donated, (a few things to local museums and the local historical society - the result of the being the caregiver for 5 generations of stuff) sold, given to friends/family or thrown away. I am emotionally wrung out from the procedure, and we are not even halfway done.

As someone who just had to do a clean out thank you @mamabunny. It was a physically exhausting and emotionally draining process. I wish my parents had done this. I actually had to bring in a lovely local couple who clean out houses for a living...they separated everything into potentially keep, throw away, donate and sell. Anything that i did not want from the potentially keep pile they moved into one of the others as well as facilitated the sales and donations. Saved me oodles of time...if they hadn't been around I would have been cleaning out my parents' house for, legit, a year at the pace DH and I were going. And I feel such comfort knowing those down on their luck will have access to some usable clothes and furniture.

Not sure who mentioned the mobility issues but my dad had something similar to this which came in super handy. No pun intended...ok maybe a little intended.
Trying to pass along some tips and tricks that may be helpful.
https://www.amazon.com/Portable-Aut...ocphy=9002229&hvtargid=pla-958846832300&psc=1