List of things we might need, please

[cubcake]

Hi all - I'm in the beginnings of trying to gather a list for my husband's attorney of things that we may need throughout this ordeal, in order to bring down his attrocious alimony payments to an ex-wife who refuses to work like the rest of us. He feels since we are very middle class (and sinking), if we can prove that we are facing some significant expenses, he may be able to reduce her amount to something more reasonable. Since we are just beginning, and I'm searching for a suctioning machine (on a different thread, someone mentioned that they were able to secure one for $135), let's start there.

Is there anyone who is much farther along who can help me with this task? Thanks in advance.

 

[Katie C]

Contact ALSA and AFTD for publications concerning expenses ... well researched and documented, they should help your attorney quite a bit.

Off the top of my head, I'd say the list should include:
Durable medical equipment: power wheel chair, hospital bed and table to go with it, commode, lift, suction, cough assist, vent equipment if you choose it, PEG and supplies if you choose them
Medications: Rilutek, mucus and saliva supression, anti depression meds, because of the FTD, anti psychotic meds
Modifications to your home: stair ramps, etc
Respite care
Eventually, Hospice care

Hope this helps.

 

[Katie C]

OH... oops.... left off the quarterly neurologist visits and the psychiatric support visits for the FTD

 

[BrianD]

A wheelchair van and a communication device would be a couple other big-ticket items.
(I apologize if my ignorance of FTD means the communication device isn't helpful)

 

[Katie C]

For a list of potential expenses for the attorney, I'd say including speech assist is good! Oh, and bipap!

 

[Lobster]

24/7 paid caregivers.
Modifications to your home to make it accessible.
Total loss of earned income.

 

[Mrs C]

Drive medical heavy duty suction machine. We found it on Amazon.com. $135 is all. Please remember you need to order the hose and suction wand also. They are not much either. We have been told that the cough assist device goes hand in hand with that machine as well. It is on order from the medical supply store. When we see what it amounts to, we will try to find one online as well. mattress wedges are nice to elevate his head when the mucus becomes an issue also. You can find them at Amazon for $35 or less. We have just decided to get an adjustable bed for the long haul! They are spendy, but if it keeps us sleeping together, I am all for it! We got ours for around $2k. Best price we could find around here....believe me!

 

[cubcake]

Thanks, so much, to all. I'm researching the potential cost of all the suggested items, and we'll see where this goes. Sadly, I'll also have to list the price of the attorney, which is exceeding all else, so far!

I'm with you, Mrs. C......an adjustable bed to keep us close is a must!

Thank you, again, for all your help.

 

[Al]

FYI ALS Ontario estimates that financial burden to a family can exceed $ 140,000.

AL.

 

[Katie C]

Chapter 7 - Financial, Legal & Medical Issues - ALS (Amyotrophic Lateral Sclerosis) Caregivers' Guide| MDA's ALS Division