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Younger-Onset AD or Other Dementia
a fantasy future doesn't have to come true
How slow my thinking is! took me years to figure out I can keep working towards my "fantasy life" apart from whether or not it is possible or likely to happen.
We decided to stay in the little house after years of looking at other houses,apartments, other cities and states and countries.
Next I let go of my PAST fantasy life which involved buying and selling vintage clothes. I had a shop once with a best friend and never let go of the joy we had in the business.
In all this time of figuring out how to live with Alzheimer's still have panic hours over What Will Happen To Me but meanwhile I was cleaning the little garage during garage sale and remembered how jealous I was when we visited some place and the people had a dedicated Art Studio/Workshop.
So we are preparing to have garage converted to winterized play room for both of us. I am spending money on a chance to have my dream space with my interesting junk for collage, assemblage, painting, fixing (ha!), hanging out.
To my children - they might think this is a waste of time and money, and I certainly did, but to go ahead anyway! why not?
The thing is as a life time writer that was most important. Now words are more difficult and a story line beyond me I think, but doing anything WITHOUT WORDS is so relaxing. Like rock hunting = heaven, feeding birds, walking dog. High pleasure + low interference.
So I have been away from boards working on and recovering from making usable spaces in the house we have.
I am still taking the THC cbd oil and while I do not feel intoxicated anymore there are times I feel especially appreciative of everything. For the physical pain caused by my efforts I use the GABA 100 mg mini dose once every 3 - 4 days.
If I can not use the new clean spaces because I become a drooling slump of flesh I could still sit in there! ha!
This might have begun when Michael decided to buy a boat. Should I? at this point in my life spend money on MYSELF when it is likely not to be used within ??? That is the thing. Why not now?
In fact we have a future and it would take our own input to make it happen when we are least able. If there is any way to give yourself a portion of your dream life, I vote we should try. Even on a small scale, even on a desk in a quiet room.
Looks like we will be working until September so I will keep checking in and be thinking of all of us.
I so agree with everything you wrote alz+. It's time for you now! I also so enjoy doing things without words. Having aphasia makes talking stressful. So anything that does not require talking is a good thing for me
I hope your room turns out to be an awesome place to go hang out. What a wonderful project to be working on. Have fun!
I've heard that our elder years are like childhood but without parents. So you can do whatever you want to do! I've learned so much from you, alz+, about the contemplative activities, such as rock hunting and cloud watching. Best wishes on your art studio/workshop. I have space for one too, once I can get it cleaned out.
You go girl! From the moment I came here in search of solace and friendship, you led the way. Now you are finding yourself again. To do what you have been doing, being playful, hardworking and active, is amazing to me. It's inspirational. I wish you could post pictures.
I am sooo HAPPY for you alz+!!! You are truly an inspiration. Have fun, enjoy, and live it up!
So I am lying in bed with dawn breaking and so sore from hauling a vacuum around I thought I'd check in.
Thanks for all the support on this! I thought I would never get over not being able to write. Or do massage therapy work. Or sell stuff on eBay. Or walk a mile.
I think you all know my "working" on house involves trying to get out of bed several times a day, and yesterday after hauling old suitcases (great for storage) down from loft I sat on floor listening to NPR and going through a 12 year vintage scarf collection.
Plan is to photograph them all and print out photos and make a book out of them. Crafty. Maybe frame some of the beauties that are imperfect.
I like the part of Alzheimer's that becomes so single minded, lost in examining stuff. Browsing. So 15 years ago I repainted our bedroom while my husband was at work and had everything redone 10 hours later. This has already been years.
If I had it to do over - I would have hired people to clean out house within months of being diagnosed. Unfinished stuff like this is a horrible drain and waste of energy.
An easy clean place to live is fundamental to handling the brain changes so I would have done it asap, and meant to but couldn't.
I suspect I will be incapacitated before long but it is the attempt, the sense of getting something done that makes me happy now.
My husband has been pitching in - I can't believe we will have a dedicated place to mess with stuff and solid steps to house!
Once I started to feel better on all fronts the unfinished business started to make me grumpy and agitated.
maybe can sleep another hour...
love and courage
We are on the same page. Your moving and doing...you make me want to clean out my garage today. I've been grappling with the idea of moving to a one floor house or adding a space for an extra room downstairs where I live now. Living accommodations for an easier future. Either choice will cost money and be a big project so I have to weigh out both options carefully.
I don't think the children understand our environmental needs or age related needs and we do not need their permission or approval. Ha! They are not our parents (even though they may think they are at times) and I'm loving the concept of being a child w/o a parent!
When I had more energy, I was held back from doing more in decluttering and organizing. So now I am actually making progress with this enormous task. I am between two images: a home full of momentos of a life well lived but difficult to live in, versus a minimialist, simplified, easy to navigate home. I want to easy to navigate home! Being around all this stuff is like drowning in paper and stuff! This is not good!
Going minimalist sounds like the way to go. Don't need all this stuff. We will hopefully be moving and be able to downsize in a few more months. It's so nice to be able to motivate each other!
to all -
I am definitely having my first childhood and having my mother's needs not part of it is wonderful.
the garage stuff is going to get boxed up some this weekend. was working in basement and realized I need to do this right. the walls and ceilings are smelly junk- will be removed and hauled away.
hen I find someone to install a large window down there we will have fresh air flow. next ceiling and walls sheet rocked after being beefed up to stop upper floor sagging.
then painted. then fresh carpet tiles with 2 wonderful large rugs, a queen sized bed (have all the bedding!!! ha ha) and a twin bed. small couch, lots of bookshelves, good lighting. and a new door. this makes it a 4th bedroom! adds value more than the cost of doing it.
then we have a guest suite. then the dog can sleep down there on hot days and have it all clean and smelling great.
that is another dream, working on it with 2 spoons of energy to start. ha! love the peple here. so smart
Wow! You love remodeling, don't you? Well, good for you, to do all that work. Then you will have your home the way you want it to be, and cozy and comfortable for all three of you!
moment to moment it seems impossible. way too much spoon sucking loss of energy!
(this is in reference to the post on how many spoons of energy are used like BTUs)
yesterday I boxed up clothes from "garage sale" for my mother in law. She tried them on and I held up a mirror. She looked like a million bucks! took a large bag full of stuff. we were elated!
then I started listing some things on eBay...oh my. I made a major error in a listing and don't recall how I found it - oh a guy made an offer on a coat I had listed as leather when it was not. Panic. Could not respond or fix it until this morning. Avoided chaos but this shows me time to give up trying to sell stuff to pay for stuff.
The Panic is lowering. I do not need this kind of tension.
the remodeling is more structural necessity which requires removing old paneling and ceiling and replacing it with clean new materials.
I always bought houses, improved them and resold for profit before it was a thing on tv. But I have watched 1000 hours of those shows and know what a wonderful space the basement can be. In a small house every room counts. The need to shore up the floor above is necessary.
It is not easy to endure these projects but I am able to push this forward now -
my sense of Alzheimer's is that is progressing - but the CBD oil minimizes the mental function loss aspects. So I can now recognize what needs to be taken care of, but the doing it still causes me anxiety.
Once the basement is cleaned out it will be a guest room area on one half and storage/project space in other half.
I have an infrared sauna in basement I don't use because it is such a mess down there. I am calling people this week to find someone to just take care of all of it. I want it over with.
when it is done the house will feel fresh and we will be able to pay someone to come clean for us.
Keeper has been helping me more and more. It took us years to learn how to manage the anxiety reactions.
I would have done this much sooner. For those who can clean out and downsize, sooner the better.
love and courage!
You never cease to amaze me with your renovation projects and especially the vision of what your going for. Are you renovating both the garage and basement now?
I want to move or put a shower in the half bathroom and add a small bedroom downstairs. It may be more cost effective to move. It's time to plan for the future and simplify life.
I realize now that I have an abnormal relationship with PAPER. I have paper all over my home. I'm drowning in paper. I'm working on releasing paper and changing my relationship with paper. I can't go forth with any home projects until I get this paper under control! Good for you two, in moving ahead!