Prepare early and completely

[mare]

Whether one is moving or not, a massive clean out is a good idea! Simplify your life!

I wish I had started on this before. For any one newly diagnosed, I would suggest start now: declutter those closets, clean out the basement & garage. Recycle where you can,
donate what you can to charities, but if you don't use it now, you probably won't later!

There will be less & less time to do this; in fact, time management skills are really necessary now!

Now, if I can only take my own advice!

 

[abbas child]

Well, Mare, I sort of went in the opposite direction. But you are absolutely right. Instead of clearing stuff out (books and project supplies), I live out of two houses, sending books back by way of Phil, and telling him (pretty funny, the piles are more or less everywhere) where to find the book(s) I now want. Last week his charge was to find my thimble, and Mare.... I have inherited thimbles from many, many women, so the choices were daunting. He got his assignment done quickly, though, in his first try. I do wish I'd done some serious cleaning out of "other things", which didn't occur to me until it was pretty late in the game.

 

[tajmom]

Mare, I couldn't agree with you more re: decluttering. I wish I had a dollar for every piece of clothing I've given away due to its no longer fitting, being office clothes (won't need them anymore), too many buttons and zippers, etc. Also went through all the old letters, mementos, etc. My father died last spring and what a huge and sad job going through all his stuff and making decisions about what to keep. I want to spare my family that task.

 

[Katie C]

Tajmom... are you certain your family wants to be spared that task? It took me 2 years to be able to do it.. but I dearly loved going through my dads stuff and reliving memories. Flip side.. .my father in law had no funeral or service of any kind because he "wanted to spare his family." It was brutal.. no sense of closure, no coming together in support. You might want to check in with your family and get their input.

 

[halfin]

We have been trying to do the decluttering thing but it's a big job. My wife and I have had some bad habits about letting stuff pile up. Not quite as bad as the people you see on TV in the hoarding shows but still beyond normal. We had a realtor walk through shortly after I was diagnosed and he was a little shocked, said we would have to clean it up so that prospective buyers could see past the junk. So we did a lot, especially my wife. Completely cleared out the garage which previously you could hardly turn around in. Now it's wide open and we could park our car if we wanted, or at least move stuff from the house out there. Got rid of a bunch of boxes of old magazines and papers too. We've donated tons of stuff to charity, loads of boxes of books to the library. Big trash pickup too. Still a lot more to do. Probably we could have sold some of it on craigslist but neither of us had the energy.

Now I can drive my WC around the house and pretty much go everywhere (except into the bathrooms, they are too small). Before, I wouldn't have gone five feet without getting tangled up in something. So whether we move or stay, the decluttering is a necessary step. Definitely I would agree, do it while you are strong.

 

[KeeKer]

I suggest you clean out the clutter before it's too late. Don't save it for your children to go through. When my mother in law went her 4 children and their spouses all lived out of province. We had a week. What she thought was important to save no one wanted or had no room or couldn't transport. 8 truck loads to the dump later. 5 trips to the self help store. Everyone took maybe 1 thing. I took the china no one wanted and bought a china cabinet to store things in. Now if I want to add to it something has to go first! Had to move to Sask from Manitoba to a smaller house and yard. Had an auction. They will set it up for you for a fee. Great way to get rid of stuff and get some cash.

 

[Katie C]

I refer to my garage as an archeological dig... layer 1: my son developed severe depression while away at college. Had to move him home, and he was in no way ready to say "yeah, we can get rid of that..." so it ended up in my garage. Layer 2: My mom moved to assisted living, and my brother was ready to trash everything.. so my sis and I grabbed what we could to "go through later..." Yeah. Layer 3: Glen stopped working, and we had to clean out his office.. 31 years of "stuff"... and finally.. when mom died, much of what was in her apartment ended up here. So.... once we seem to be past the rainy season, we're having a dumpster party! A couple of friends will join me and the kids, and everything in the garage will be sorted into donate, trash and perhaps a very small keep pile. I can't wait!

 

[tajmom]

Katie, I do see your point. Problem with my dad was he kept EVERYTHING and I mean everything. I'm trying to get my stuff down to a reasonable level so my husband will be able to manage. My kids are young so I don't want to overwhelm them. As for a service/memorial, I can't imagine having to do without that. I'm planning mine now so it will be a done deal when the time comes. (Not that I'm a control freak or anything.....) ;-)

 

[irismarie]

"Now it's wide open and we could park our car if we wanted,"
Use a garage for parking a car? Never heard such stuff and nonsense;-)

 

[kinma]

I was renovating a 1890 victorian 2/3 done when diagnosed. The market had left my mortgage upside down so after fighting with co for 1 year just walked away. I moved into my ex's multilevel with new wife, her dad, and 18 mo son. They built me a mini apt so I can be with my 2 girls. I just stopped doing stairs and the shower was 2 1/2s up so we're looking to install that. I had started going through things right away but by the time stopped working couldn't lift. I still have a few things I want there. No matter how prepared Itry to be there is always more.
We moved 30 minutes away and its made a world of difference. Before help,food,visitors every day - now a visit every other week. My oldest really misses her friends and I miss mine too.
Kris:roll:

 

[t34gib]

We have just moved, in fact still have the kitchen to do. We downsized to a manufactured home in a retirement village. I have been forced to go through stuff and am lucky that what I want to keep and don't have room for, I was able to leave at the house because my daughter is moving into it. She will only be 4 minutes away and so that is also a good thing. I have left at the house the stuff I know that her and my other daughter will want to go through and there is some stuff that we have taken that I know will go back. I am glad to have it done and the purge was a real good feeling. Now I know what is in every closet and corner. One more purge and I will be happy. It has been very tiring and on top of that it has become very difficult to eat so have resorted to the feeding tube for most of my intake. I have lost a lot of weight and now feel a weakening in my left hand. Scary. I have been strictly bulbar until now. Go to Mayo the first of March and will see what the progression has been.
Nancy

 

[Just J]

We moved to a new home 6 yrs ago and did a major clean out then. 4 yrs ago we improved our basement and did another clean out. Since last year I've been going through more stuff in order to downsize the "stuff" we keep in storage and closets. I've sent a lot to consignment shops or to charity. This past week due to being stuck in from the snow storm I went through most of Mike's clothes. Now that he barely leaves the house, doesn't wear suits to work anymore, I was able to get him to get rid of a lot of clothes that just aren't needed. So we will keep pecking away at it. No plans to move right now but if given the opportunity to go South (like Carolinas or further south) we will not hesitate to go.

Our home has 3 levels but everything we need is on the main floor. Was even pre-designed for wheel chair use (that was total irony) doorways and hallways are wider, even island in kitchen is spaced to accommodate a wheelchair between island and wall counters/cabinets. However, bathroom will need to be changed once Mike is fulltime in wheelchair. Right now we have walk-in shower that has a bit of a ledge. Seat in shower and shower head is on a hose so he is able to use the shower in its current state.

 

[irismarie]

I should LIKE to prepare early - like our dear friend with the PEG inserted a year before he used it full time - but where does one go? Have not yet got access to the ALS centre, the doctor is a complete twit and the neuros can only think about redoing MRIs and EMGs. Does one go to a stomach specialist? a throat specialist for investigating swallowing problems? A lung specialist for breathing problems?
I feel I am sinking so fast and there seem to be no lifeboats on the horizon:-(
Did you all get the advance advice and help from ALS centres?

 

[irismarie]

Oh dear, that sounds so pathetic. Please be aware I have been playing "slides" with my wheelchair on a new steepish ramp. Who says there are no good times?

 

[lynster]

Italian style shower seems the cheapest and easiest.

Still want to know what an Italian style shower is...