Hello, I’m new to this forum. Just to give you a little background, I am caring for my 81 year old father-in-law who was diagnosed with vascular dementia about 6 years ago. He moved nearby us with my mother-in-law 4 years ago, so we could help both of them. Soon after they moved, though, she was dx with stage 4 cancer and died 6 months later.
Until July of this year, he has been able (and wanted to) to live on his own with us checking in every other day, then every day, taking him meals. Eventually he stopped eating, and just slept all day and we decided it was time. He was so frail when he moved here, we installed a chair lift, but with a good diet and working with his doctors (and ditching some of his meds with their approval) he has gotten stronger, is sleeping at night and doing better. He walks our dog every day and the dog pulls him back home when they get to a certain point (I also keep an eye on him and his phone has GPS).
Another struggle he has is macular degeneration which is at the point now he can’t see well enough to read, write, play on the computer, work a remote or anything. So he is stuck watching TV or listening to books on tape or music, but mostly he chooses TV.
So, things are not as bad as I have read it will become. So far, he is not aggressive. He has always been quiet and mild mannered and so far that is mostly the same. He still recognizes us, his other children, but not his grandchildren. He can still dress himself (mostly) and bathe himself and eat, as long as we start him on a task.
The behaviors that can be frustrating are that he will not communicate his needs. For example, if he is cold, he won’t say anything and if I ask if I should turn on his heater or whatever, he gets upset with me. Also, he picks his face. He has about 20 sores right now. First we tried redirecting, but that only works for a few minutes. We tried asking him to stop, but he gets upset and says he’s not picking, so that didn’t really work. The doctor tried Depakote, but it was worse, now is trying Zoloft, not worse but not better. He hides it when we come in the room, sometimes puts his whole head under a blanket, lol. For a while having him put lotion on his face worked, but overnight, he opens all the sores back up. He does not tolerate bandaids either.
So any ideas you have about that are greatly appreciated!
Second, we want to take a vacation with our grown boys and we are debating whether to take him. Honestly, any change stresses him so it may not matter to him whether he goes with us to to my brother in law’s. If he goes with us, it won’t be the end of the world, but definitely won’t be relaxing. We will likely have to be cleaning up pee and dealing with wandering around at night in a new place. I know the days are limited as to being able to get away like this. It is questionable whether my brother in law will even take him for a week as he is now.
So, am I being too hard on myself wanting a vacation without him? My boys definitely don’t want him going. My husband is ok with him going, thinking we can still go to the beach and such, leaving him in the house (he won’t want to go outside) but I don’t think so.
Lastly, we are trying to sell his house and this is a whole other frustration for us. We went through and took pictures of everything thing in that house, and my husbands siblings can’t be bothered to tell us what to put away for them. We have waited a month. We have a dozen other things going on too, my husband works full time, and I run a farm, but we manage to make time. It feels like we are the only ones sacrificing any time to get these things done.
So I just needed to vent. I know it could be worse and will be worse. I just feel very alone at the moment and have zero support network. I cared for my mom with ALS years ago, my MIL and now my FIL with very little help and I am getting older myself and I am just tired.
I am relieved.
And let us know how it works out, too!
Regarding the house contents, I’d go for a middle line. Write again to the rellies, say that you haven’t heard back, and if you don’t get replies within a fortnight you will take what you want yourselves and sell the rest. Chances are that the idea of you taking what you want will prompt a rapid response!
Regarding the face picking, my mother’s system for weaning us off nightime thumbsucking was to tie our hands up in ‘bunnies’ made of the big old cotton nappies (diapers – I think about 2’ square). With both hands tied in a knot at the wrist, we couldn’t get them undone before we went to sleep. I’m sure someone will disapprove of this, but perhaps you could think up a less demeaning reason for them. Another system that mothers used in the past was to paint the thumbs in something that tasted nasty. If FIL is likely to put his hands to his mouth after picking, a nasty tasting cream on the scabs could work too.
Best wishes, Margaret
This will be helpful on many different fronts.
First, obviously, you get a vacation that is actually a vacation, not caregiving in a different location.
Secondly, if you were to take him along on vacation, you would likely have to take all sorts of medical supplies along. At one point, when my sister and I had been talking about possibly taking a cruise, my mom chimed in with "maybe I'll come along, since respite care was so expensive! Then I asked her "ok, mom, how do you suppose we can do that? How are you going to get up and down off the toilet? How are you going to be able to climb in and out of the shower? How are you going to do walking around on the ship if we encounter rough seas?" Etc. I don't think any of that even occurred to her; the longer I was taking care of her, the less she seemed to pay attention to things like that - since it became my responsibility to make sure all of that was arranged, she didn't have to worry about it or consider it. She really became like a 5 year old, who doesn't think about life's responsibilities because someone else takes care of it all.
Thirdly - and maybe the most important - while he is in respite care, there will be activities he can join in with; it'll give him and you a taste of what his life might be like should the day come that you need to place him. It might then make the prospect a little less scary. At least it did for my mom.
The only warning I will give about respite care - you have to do a lot - A LOT - of planning to make it happen. It's not like making a hotel reservation. Here in NY, I had to find an independent RN to come to the house and do an evaluation of mom to see what sort of care she would need while in the facility - and there are very, very few independent RN's who do it. An agency will do it, until you tell them you're looking for respite care only - they only want to use their resources when you're looking for caregiving through their agency, which I totally understand, but that didn't make it any easier. I spent hours, literally, on the phone looking for someone to help me with this. If you're planning a vacation, find out sooner rather than later what *exactly* you will need to do to get FIL into respite care, and don't wait until the last minute to get together all of the stuff you will need!
Good luck!
You have every right to take a break and go on vacation with your family. Whether FIL stays with BIL or goes to respite doesn't really matter as long as he doesn't go with you.
I would send a group email that states the time that has already passed and no answers for any items from the house and I would tell them that they have 2 weeks to respond because on day 15 it is all going to be gone and they will not be getting anything after that.
Make them respond with an email that they received your email, that way they can't say they didn't get it. Maybe send texts that tell them about the email and save their responses to cover yourselves from accusations.
Go have a wonderful vacation and leave the guilt for when you have done something wrong.
Find respite care for him and go on your vacation without him. You will not enjoy your vacation and neither will your FIL.
You have given everyone long enough to decide what things they want from his house. It's time to call a realtor and proceed with the sale. Call an estate liquidator, who will not only pay your FIL for whatever contents are worth something but also will clean it out. My inlaws had collectibles - coins, antiques - and they got a good chunk of change from their estate liquidator. Your FIL's NASA memorabilia may be worth a good deal too.
Sounds like you need a real vacation to tackle the rest of this year. Selling a house takes time even in this seller's market if it's not emptied out of clutter. Buyers want to imagine themselves in the space. If the house is worth enough but hasn't been updated, the realtor may suggest staging it so that it shows well - "good bones" - and gets snapped up quickly.
As far as the stuff in Dad’s house goes, tell the siblings the house has yo be empty of personal items and professionally staged by a certain date.
Once it sells, they have until 2 weeks after closing, well before possession to remove any items they want. After which items will be sold, donated etc.
Also keep track of your time and costs around selling the house. Tell the siblings you will be reimbursed out of the proceeds.
I think that 30 days with no response is actually a response, as in we don't want anything. Just my opinion.
When my dad was still alive, I took my folks on a couple of small road trips -- three or four days -- and they were both good for Mom and stressful for Dad and me. My dad and mom stayed in one room and I had my own, so poor Dad never got a break. It was very difficult getting Mom comfortable in a hotel room, but at least we were able to get handicapped accessible rooms for her. We would NEVER have left her alone in the room -- ever. An unfamiliar place is a scary place to someone with dementia, so please don't do it.
You need a vacation and should take it. The BIL really needs to step up and take Dad for that week, because if you take him along, no one will enjoy themselves.
In the meantime, if Dad's macular degeneration hasn't progressed too badly and finances allow it (used ones are frequently available), look into getting one of these -- https://www.enhancedvision.com/shop/low-vision-products/merlin-ultra-desktop-magnifier?utm_medium=ppc&utm_campaign=Shop+Products&utm_term=&utm_source=adwords&hsa_cam=199115341&hsa_tgt=pla-42018899887&hsa_src=g&hsa_ver=3&hsa_net=adwords&hsa_grp=15154347181&hsa_ad=99127700581&hsa_mt=&hsa_kw=&hsa_acc=6486675340&gclid=CjwKCAiAg8OBBhA8EiwAlKw3kkcL2Sf6Xj2kQK_x-cMg82KQu91UI7y_3xnF4kaNZHGb9WTUM_tofxoC-U0QAvD_BwE
This magnifier saved my mother's sanity in the early years of her vision loss. She was able to read books and the newspaper for years longer than she would have otherwise, and it was only the dementia that finally made the machine unusable for her. Also contact the Braille Institute in your area for other resources for low vision issues. My dad kept a big wall calendar with giant numbers in the house, so Mom could keep track of the days. Every little bit that helps them stay connected helps.
As far as the house goes, yes, you're the only ones taking care of any of this, and that's probably how it'll be from here on in. One child seems to get the brunt of the work because they're the only one walking the walk, but at least you get to set the rules. Let the siblings know there'll be an estate sale on X date, and they need to come to the house before then if they want anything.
I agree about leaving him alone in a strange place. Even here, where everything is familiar, I don’t leave him to go to the barn more than 30 minutes.
Good point about the house and setting the rules. My husband is trying to be so diplomatic. I told him next time his brother says let them know what they can do to help (half meaning it) tell him exactly what he can do and when we need it! His sister is in Germany and is unable to help so that’s a bit different
My FIL was an engineer who contracted for NASA, if you can imagine. He is a genius - when I was going through all his papers (he kept every piece of paper he ever got since the 60’s, lol). He had all his notes and blueprints from projects he worked on, and patents. I realized just how detail oriented and precise he is. He is very frustrated not being able to do the simplest things. He really is an amazing person