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Younger-Onset AD or Other Dementia
adjusting to new living place
Choices are few when you have dementia as to where you can live. Leaving my home was very hard on me and I have to credit my daughter for forcing me to go.
I think there used to be a standard of like 45 days for humans to begin to feel "at home" some place new, and 90 days we would have accepted it. Not sure that was ever true but close enough for me.
I do wish my husband back then would have helped me set up the house when I was diagnosed. I can understand why he decided not to BEFORE that, when he thought it was just some problem of mine, but after ? Making me live in his clutter and stuff, refusing to help me drove em to divorce and the move. It was dangerous, I could not clean, and the small house just became suffocating.
Looking back I did all I could to persuade him I needed a clean easy place to live in but could not describe (it wouldn't have mattered) HOW a mess affects brain drain. He didn't care, it didn't bother him.
Where I live now is smaller house than I had, I basically live in my bedroom or on porch. This is MUCH easier. Habib and I have worked out a system of who can do what, he understands now why I want things put back where I put them. We keep walkways clear inside and outside.
My "gardening" has been watering some plants around the yard. I put clothes I don't wear in suitcases in my closet. I don't even have a dresser.
The one thing that has saved me from despair is having my own room.
I walk my dog through neighborhood every morning as do many neighbors. Yesterday I met a man and stopped to chat. Turns out he has Parkinson's and used to tune pianos at a bar I owned in late 1970's. He said he had video of me dancing at the bar! Then later I got a message from someone who heard I found copies of our monthly band bookings and wants copies of them. What are the odds of that?
The piano tuner forces himself to walk 2 miles a day and uses cbd oil which allows him to do it. Someone left flowers for me on steps - no one we know claims to have done it.
I think I am doing better living away from husband I loved so much but who couldn't help me. I understand assisted living now, the appeal of having help when you want it or need it from someone who isn't emotionally involved.
We have to be patient with each other here now as we both know neither of us is going to be able to live alone again.
Wish I had help giving away excess 8 years ago, some of it is being delivered to me here in boxes shipped by my daughter from my former home which is up for sale now. Almost 30 boxes, all sizes coming UPS. No place to store anything in this house and no need to. Plan to get rid of extra stuff here asap, Habib said he would call for a thrift shop to pick up the rest as donation.
simplify your stuff asap. Make yourself a room or a section to go recover. Give away stuff to people you want to have things or need stuff while you can.
Having a lighter burden is helping me a lot. I still miss Keeper a lot for the talks and leg rubs and adventures, this is where I belong.
Could not have chosen this 8 years ago, life unfolds.
. . . and no ice and no snow storms, and plenty of nice people around you which you already have found.
Flowers left on the steps for you; how sweetly wonderful that is. Your home sounds comfortable, and the lack of all that clutter must feel freeing and restful.
As for the boxes, Salvation Army will come out within 24 hours to pick things up with their truck. Nice to know people in need can use what we find is overflow.
Keep on keeping on, and tell Mr. Habib that we say hello to him and wish him well too.
No dresser? Might I suggest foldable storage boxes and kon-mari folding? At least for your daily clothing. Life is so much easier when you can find your stuff easily. The foldable storage boxes/baskets can stack on their own in your closet or shelving units can be used to hold them. The theory behind kon-mari folding is that everything is stored on edge so you can see every garment, sheet, towel from above and nothing is buried. The act of folding is kind of fun, and the sight of everything in order is very emotionally soothing.
Chronic clutterbugs find an emotional defense in the chaos, and they are unlikely to change because of that. My mother was an "everything out" sort of organizer, but the sheer visual attack of so many things in a room made it difficult to see individual items. That was the source of our initial friction before her diagnosis, until I realized the chaos was preventing her from having to face deeper issues. Maybe the problem wasn't that Keeper didn't care about you, but rather he had his own issues and couldn't change.
PS Someone left you flowers. That is so sweet, and it shows you are appreciated for being you. Because you ARE, you know. ☺
I thouroughly enjoy reading your posts, - as they read like short stories...
May I ask what sort of living situation that you are in? I think this is the first post of yours that you mentioned Assisted Living. I was under the impression that you had moved into your daughter’s house?
I agree with your suggestion of downsizing and off-loading all of the unnecessary “stuff” that many of us seem to collect throughout our lives. - And the sooner, the better. I have actually started this process myself now, - as I see it becomes much more difficult as the years go on.
Alz+, you made a decision with your family and you are all making it work. Well done!
When a person becomes blind, she and the family are taught how to set up the living quarters and warned to keep everything the same to enable independence. This is what needs to be done for PWDs. We need an uncluttered, consistent environment. Why is this so hard for people to understand? We know what we need for ourselves. We can't rely on other people to decide for us.
I love your neighbors!
the end of the boxes of Stuff has come. I have 20 unopened on front porch - too hot and not feeling up to it.
we are doing good with the mess, removed old loveseat from house, a number of things broke in transit.
I hung some old framed prints in kitchen one day. These are wild successes!
thanks for support and kind words! One of my daughter's friends gave me a bunch of organic perfect veggies from his garden - really nice. I walk to grocery once a week and they help me now knowing I am confused.
called mechanic as Habib's 2001 Toyota was going in today for repairs and requested windshield replacement. The passenger side is cracked top to bottom, I don't go in the car much but it scares me so hooray I made the call and the guy said no problem.
Also ordered something and had delivery problems, had to make phone calls - shaking and stressed about phones and information mistakes but I got through it and had 2 helpful customer service people which helped.
Going slow. Just checking in. Kind of hard to accept this is it with both of us fairly disabled. I did start using headphones as the sound of anything upsets Habib esp at night. Have the earbud types - after 4 nights of battling them I realized I only need 1 ear bud in to hear audiobooks! I was trying to keep 2 in and ... they work! He is happy and I am almost done with The Godfather - 14 hours free on youtube - excellent reader. I listen for awhile then go back and relisten. I really like audiobooks.
I have not painted anything yet but I am getting ideas. No panic or fear since I started adding 5 drops thc to morning oil dose. Wow. Years to figure it out.
love and courage
JFK OC and everyone -
I do not remember writing posts, like one above. I was going to write same thing this morning more or less. Now I forgot what I was going to add.
OH! Yes, I found letters of diagnosis and treatment summations from Mayo Clinic for my Dad in an envelope in a box of old financial records yesterday. My mother had sent me copies of 5 letters over the course of his treatment when I signed up for WRAP study in Madison Wisconsin years ago. Don't remember reading them before.
I read some of them and started shaking so I put them away (? where?) to read later. In one there was a report about how he "fell in shower and brokes several ribs" and they attributed this to "seizures" but I was told a different story. My Mother was hiding his illness for many years. Will find them again as I keep sorting boxes of papers and can see very close pattern in progression with slow long early symptoms.
It has made a HUGE difference to have my favorite curtains in my bedroom now. I have a much smaller wardrobe so passed over getting a dresser for now. I had 20 woven baskets for storage and none of them came. I am very sad framed art gifts given to me at my wedding 20 years ago were sold off when I begged to have them shipped.
I bought a new massage chair when I could hardly walk and sorting boxes was killing my back, a 12 hour sale of the basic model came in email from Costco last week and I bought it. I told both kids I am buying myself a couple expensive things (if they can spend money on stuff to "help me" I will do same).
Connecting to delivery company had me upset but I finally got through and it was delivered next day! The 2 guys carried this 150 pound enormous boxed chair up 12 steps to yard and up 10 steps to front door after $20 tip. It was fully assembled. I plugged it in and tried to figure out controls. I got it to work and slept without pain last night until 8am!
I also ordered a small sectional which comes in 2 weeks after Habib's man friends helped carry an awful 30 year old bulky love seat out of living room to curb.
The THC drops in morning still eliminating the FEAR buzzing and CBD still working for me to get in a trance and go through papers for hours. Doing my own rehab for weak legs.
Last night I got out of bed and wrapped in blanket sat on front porch with dogs and watched shooting stars. More tonight in darkest full moon + star shower combo.
When I am sad about "stuff" being sold off now I don't mention it. I say "I appreciate all you could do in the limited time you had. No one could have done better," etc and that is what helps us all keep going. No one wants to hear about what I miss, got that.
Habib has come around to seeing if he cuts me slack over A, B, C and I cut him slack over his D, E, F then we both feel good helping the other and being helped. He made me a safe dry storage area under house and used the giant massage chair box with lid the place to put things into and then he will slide it under house. He has used the under house storage area since he moved in 45 years ago.
Going for short walk with my dog now. Ordered 2 tall bookcases being delivered today and I will have to assemble them. Once done 60% of my stuff will be out of boxes and off the floor. Will get earthquake straps for bookcases.
If my Dad had had CBD ... ? He really was very calm and contented through his end of life and we had really good help. His home didn't change (his buying this house and leaving the apartment they had upset my mother but he "needed a safe place to live" and went through years of searching for a "safe house". He had a small pool and I would take him in there and he would laugh. I miss my Dad.
thank you to my friends here for carrying me when I can't walk
Despite a strong craving to hold on to things, I have discovered that I don't miss them when they're gone.
Iris, I'm jealous.
Things I have hauled from california to florida to michigan came in boxes smashed to bits.
Anyway, I came to board to say I had another heart episode, got through it with good help from Habib, woke up with shingles.
The atmosphere here is improving daily.
Want to thank JFK OC for a comment she made recently about how stuff blows up and things are said and done and we move on and get over it. I took it in at the moment and working with it since. Both Habib and I are being more respectful and kind to each other, keeping our distance, splitting up who can do what, when.
Have to say the house is beginning to have a homey feel to it. There are now places to sit when people drop by, everything is cleaner. I have a few framed prints on walls, and think before winter I will get a tv for my bedroom.
In bed today, had another calm "panic attack" - sitting on floor talking with neighbor I felt weird, a little dizzy, broke out in a sweat, collapsed on bathroom floor. Woke up with shingles.
It isn't easy but it is better than being responsible for everything.
just checking in today.
Alz+, I'm glad things are coming together for you. But what about this heart episode and collapsing on the bathroom floor? Is there anything you can do to head these off at the pass? Take it easy!
Alz+, I have many, many nice things boxed up. One part of me wants to think that I can resume using my nice things. But another part of me is well aware that I can barely handle a modicum of what I own. I need for things to be very SIMPLE, suitable for a middle school child. I just can't handle more complex items. I also cannot handle multiples of the same items, such as my jewelry. I really need to have a very simplified environment! I feel as though I am drowning in stuff!
I am almost done sorting boxes of my stuff. Boxes of photographs brought back a lot of memories and I had forgotten a lot of wonderful moments.
Habib has been very ill and just got help, found out I could be helpful when he was down. Life is very simple, made myself a place to lie down on covered porch with curtains to keep sun out and a couch.
We are getting along incredibly well. The house has a few things that belonged to me a long time and seeing them is always a pleasure and comfort. So glad I kept my dog too.
Lately I am very certain about things that turn out to be totally wrong. I left water running in bathroom sink and it flooded the vanity and floor. I cleaned it up. Life is simple to handle even with mistakes.
to prevent falls when walking my dog I practice lifting my feet like stepping over a hose, just enough to keep from tumbling.
As I have shared before my relationship with my family deteriorated after my father died and the burden of those feelings, thoughts, perceptions were poisonous. Looking at the things from my Mother and seeing photos of my dad from long ago removed those hard heavy thoughts. One day I realized my mother gave me what she could, vases, some paintings of birds, her mother's quilt... The grief was replaced with a feeling of kindness which is the biggest accomplishment of my life.
This is a good place for me to live. My daughter was right. I feel wanted and loved.
This is what I hoped for when first diagnosed. Simple place to live. Places to be alone. Birds coming to eat seed, happy dogs, easy kitchen...
love you all so much
That is great news. So glad to hear that thinks just keep improving
for you. About the sink I have been there and done that. I did not even remember
it was me who did it. I had thought my wife was doing something while I heard
the water pouring all over the floor.
Ditto. For me it was the tub. Now I don't leave the bathroom with the tub or sink running. In just the blink of an eye, I can forget all about running water!
You continue to inspire us, Alz+. A quiet home--you've found this; I'm getting there. Our culture is about constant activity and high drama. Quiet can somehow seem unamerican. It takes a paradigm shift in our belief system about ourselves and our lives.
I hope Habib feels better soon!