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joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,835
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I was laying in bed last night thinking about this and had the wording all figured out. Now I can't remember how I was going to approach it! It is great to be getting older and not able to remember. LOL.

This is going to be a 2 point post.

The first point is that everyone should get things in place before needed and practice using them. Items like walkers or wheelchairs are easy to get when you need them, but even these should be in place before they are necessary. Don't wait too long and risk a fall.

What I am thinking of are things like a lift, this is a time consuming endeavor to do it right and have it work properly. If you wait too long it can become a nightmare for both PALS and CALS. I wish someone had emphasized the importance to me - so I am doing that for you and hope you will heed the warning.

I have always tried to have things in place before they are needed and thought I had this taken care of. But now that we are having to use it for all transfers it is a nightmare. The sling is very hard to put on and extremely uncomfortable, to a point it is down right painful. After using it my wife is in tears. I am at a point that I can't help at all.

Lifts are very expensive so we only put a track over our bed and then one in the bathroom. This setup requires a transfer from the wheelchair to the toilet, then back into the wheelchair, then move the motor to the bedroom and hook everything back up and transfer me from the wheelchair to the bed. Then comes the chore of trying to get the sling off me. That is a whole other story.

There is also the issue of how do you get your pants up and down?

What we should have done is had the track go from the bedroom all the way into the bathroom so several transfers could be eliminated. We are still looking for a more suitable sling.

So, what I am suggesting is that you get a lift in place and practice using it before you are absolutely dependent on it. Iron out the bugs early, you will be thankful you did.

Please don't take this lightly, it is more serious than you think. Without proper planning, and working the bugs out, it can be a nightmare and create huge problems.

The other thing I would like to mention is the topic of moving. I am not talking about moving to a more suitable house in your town. I am taking about moving to a different city because your, well meaning, children want you closer. Although this may sound like a good idea it may not be. After getting our house set up for my care we were talked into selling and moving. It turned out to be a bad idea and we had to start all over again with renovations. This time I could not do it and we had to hire people, needless to say things are not the way I would have done them. They also cost way more than we could afford.

Then there is the problem of making new friends, suffice it to say that has not happened and if it was not for this forum I don't know what I would do.

So, if there are children of PALS reading this, please think hard and long before making your parents move, it may significantly shorten their lives.

There is my rant for today, sorry for the length.
 
That's awesome advice Joel! There are so many things I read here that I wish I'd have known when I was caring for mom. I'd like to add a few things to think about in regards to preparation. Nobody likes to think or talk about this part but if you are a family member or want to take steps for your estate executor this may be helpful information. OR maybe everyone already knows these things but we sure didn't.

If you do not have anyone else on your bank accounts, consider adding someone you trust if they will need that money to manage your estate. (I'm not sure how or if this applies to married couples my mom was not married) If mom had not added my sister and I to her bank account that money would have been frozen to us until the estate closed. We needed that money for incoming medical bills and her funeral expenses.

Another biggie is talk about the negotiation of lawyer fees for managing the estate before letting them handle it. Some charge a flat percentage which in some cases can be a very unfair amount to pay them depending on how complicated the estate is. If you don't talk about fees before starting the process it's pretty hard to get around the flat percentage. We didn't know about this until months after mom died. We were just expecting a simple hourly bill. My mother had a lot of family farm stock in her name. On paper its very valuable, in reality it's only valuable if you can find a buyer in which there really are none. So all they had to do is tranfer the ownership but are entitled to a 2% cut of it which equated to tens of thousands of dollars. We are currently trying to find a way around the flat rate and hoping a judge will see it that it is an exhorbitant charge.

Joel, I'm really sorry you find yourself not making friends in your new envrionment. I can't imagine asking my mom to leave everything she'd known her whole life at that point in her life though I can see how it might be the easier solution for many families. I'm glad you have this forum and I'm glad you contribute so much to it, I'm sure you've helped more people than you know!
 
Joel, thanks for this valuable advice. We all (or at least me) tend to put off uncomfortable or difficult things until they are more difficult but your advice is well taken. I was going to take a course to deal with my procrastination but I put it off so long that it was too late, the course was full.

I am sorry that you haven't been able to make new friends, some communities are easier than others to make friends in. I am thinking of my human geography courses that I took in university and how the geographical layout of the community affects how people interact. We all drive everywhere, whether by choice or necessity, isolated in our metal boxes. Also, so many of us now live in houses that are insulated from our neighbors, houses with garages door openers so you can go to work and come home without ever having to know, see or talk to the people next door. My short rant, sorry.

Please know that you will always have a friend here.

Barry
 
Thank you Joel for the informative post! My husband was just saying yesterday how he did not really want to get started using the new iTouch for a speech device, as he feared he would become dependent upon it! I told him it was better to get ahead of the game and know how to use it before he really needed it with his own family. I gave him the "bright" side: Those that know him very well can understand most of what he says, unless he is tired. So he needs to go ahead and learn to use this for those that don't know him well.

Sorry you have had difficulties finding new friends.
 
CJ, pretty much nobody can understand anything that comes out of my mouth now so I am now dependent on my talking devices even to talk to those that know me well. It sucks but that is the way it is and the sooner we get good at using something and work out all of the kinks the better it is for everyone.
 
Joel ... thank you for your post! I know it will help a lot of people. I haven't even begun to think about transfers yet. I'm sure I will be in a nursing facility before I need that. (I hope, at least, as I can't see how we could handle it at all.)

I'm checking out care facilities for my husband and me and in the process of selecting a new caregiver (my previous one caused a LOT of stress, which I don't need), and it can be overwhelming making these changes. I can only imagine how frustrating it is for you to see work done not as you would have done it, and to lose your familiar surroundings and networks.

I depend upon the forum, too, for support. It's one place where I know people understand where I'm coming from. I think we're not only friends, we're a family, too. And we all treasure you, Joel, and depend upon your wisdom. We are SO lucky in our moderators ... the best in the business!

Hang in there!
 
Joel,
I remember back when you moved. I think we all really appreciate the advice, you have such a caring heart, and you sure have me as a friend, not to mention a few thousand other people. I moved 2 and a half years ago. I used to move for a hobby when I was healthy, this time I moved for not feeling well, I agree much harder. I always loved organizing and cleaning.
 
As usual, great advice Joel! The moving part in particular.
 
Thank you everyone! You have no idea how much I love and cherish each one of you!

There is one thing I would like to add. It is the fact that if you do decide to get a trache and vent there is still no reason to move. With the experience we now have we would not have moved as it is so much easier than we were told. Not knowing and believing our doctor we felt there was no choice but we were completely wrong. The first few weeks are definitely scary, but you wake up one morning and realize it is quite easy. I wish I had someone tell me how easy it was before we moved so I am telling everyone before you irreversibly change your life needlessly.

I am here to coach anyone through this and show how easy it is!
 
Joel,
I think I speak for so so many pals and cals, who because of you, look at the trache and vent in a entire new light. No matter what we all think in the long run, you my friend have given so much of us a choice. Choice is something we do not usually have with MND. You wisdom has shown that anything and everything is possible.
I think everyone at least can look at your experience and be hopeful, and that is a really big gift to so many.
 
I should add that dealing with a trache and vent is the easy part. The hardest thing is dealing with immobility, but if you can get past that there is nothing you can't deal with - everything else is easy in comparison.

I accept the fact that not everyone is in a position to consider a trache and vent but don't fear it or believe your doctor. It is one of the easiest things we have had to deal with and one of the best things I have done. We can now do things that were never possible while using a bipap.
 
I can very well understand where you are at joelc. My sisters are working to move me and wife to Nebraska probably in the spring around March or so. I don't have many friends here in Missouri, we've only been here 4 years. I have 3 sisters, and all of their grown kids, and the move is going to happen fairly quickly.

I don't own any property in Missouri, we were just starting to look when all of this happened. So that will be one problem I won't have. But glad for your insight anyway.
 
Joel,

As always , you give the best advice. I have always found it to be sound.

Thank you my friend.

Glen
 
Joel , you have always stood out from the first time I started reading all the remarks on this forum. Thank you again for your help and kindness you always show.... Linda:smile:
 
Dear sweet Joel, I can never Thank YOU for the countless times that you [being on this forum] unknowingly have lifted my spirits, given me valuable advice and empowered me! I am in agreement with Beth, this forum is really a family. Our family of choice! We talk, we share, we argue, we kick butt when needed and we offer such love and support :] I so wish that we could all meet for a family reunion :] Think about how much fun we would have!
Yes, planning ahead is so critical-not only for us but for everyone. Our problem as far as durable medical equipment is that the Dr. gets to decide when and if we need it. :[ Moving...When Web and I created the Grace House we thought that we would be grow old here, that we would have years of sitting on the porch living through sunrises and sunsets...The reality is so different. I will find it extremely difficult to live here alone-the expense and the normal routine maintaince to say nothing about the mountains of snow that need to be removed in the winter. Honestly, if there was a market in our community-we would have sold it. I don't know if I will ever be able to and our really big fear is that we will lose it and it is all that we have left-everything else is gone. IF it were possible, I would love to move somewhere and live in a single story house with a postage stamp yard instead of our 4 city lots. A state that has REAL services and help instead of South Dakota...somewhere we would qualify for something that would help! I hear you talking about social isolation. Don't you think that is just a part of our lives due to the very things that Barry brought up and also it just is the nature of the ALS BEAST. I soul appreciate my forum family. hugs, Kay Marie
 
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