Asking and Assigning Help

[Jason's Dream]

Okay, we have many people wanting to help.

Have you had people help you? How have you gotten that help? Have you stated, I need (and this list items) or have you stated what you want more of (ie: more time to yourself, more couple time, more time with your kids, etc), and asked for help in other areas? Did you make a list? What was your list like?

I really need help on this, as I feel like a work mule most days and want to spend more time.. more QUALITY time with my husband and children then I do now.

As it is, I seem to be ALWAYS doing laundry, dishes are never caught up, I can't keep up with the housework, .. my time is limited when taking care of my 3 year old, 4 month old and my husband. So, making meals, takes time away from them, sometimes I need someone to take care of the kids to spend time with my PALS.

Also, it seems the paperwork and errands I hate the most as they take me away from them all. How do you delegate that stuff when some of it is legal work to where you have to be the one doing it (IE: SSN, Disability, and SSI).?

Also, side note, did any of you have problems with SSI, and Disability? Did you ever appeal thier decisions or hire a laywer? TIA.

~ Becca

 

[sadiemae]

You should not need to hire a lawyer in order to get SSDI. PM me with the problems you are having, and I will try to help. Basically, if he is eligible for SSDI, your money will start being paid the 6th month after he stopped working, or was diagnosed. Medicare will kick in after 5 months.

 

[Chase_Corin]

Living in Canada I can't really say that we have had problems getting support for my father. He was already on Disability and his pension when he was diagnosed.

We have however contacted the local ALS Society and our Member of Parliment (I guess that would be your equivalent to a congressman) All of which have been forthcoming with assistance or information on how to get assistance.

The only thing we needed a lawyer for was to file a Power of Attorney and Living will for my father because of his deteriorating condition we wanted to do so before he couldn't voice his opinions on the subject.

I would suggest contacting your member of government's office to get help. You shouldn't need to have a lawyer involved just to get the assistance your intitled to.

 

[BrianD]

Becca,

It's great that you have many people wanting to help. I use a website sponsored by the MDA to organize help. You can set up your own personal web space for it... and it is very easy to use. Just go to the main MDA homepage, at the top you'll see a tab for "my muscle team". That's where you can get the information.

Brian

 

[Katie C]

I use the same website Brian referenced, and in fact one person who really really wanted to help I assigned as an admin for the site, so she did much of the organizing! Don't be afraid to ask for whatever.. you'll be surprised what people are willing to do!

 

[10steps]

With some of the legal stuff you can have a social worker come to the house and do paperwork or whatever and handle some things over the phone for you. This is very helpful. Meeting with a lawyer you really need to do yourself - i went without my husband and had him grant power of attorney, health care proxy, hippa.

I have a white board with jobs that need to be done daily, weekly, whatever. have folks do the house work - i have help and they look at the board if I'm showering my husband and pick a job or jobs. Meals you need to figure out which days of the week or ask for them to be freezer friendly.

 

[smwelder]

i so glade you posted . there is so much useful in fo you just help me and my cals with what you posted. thanks

 

[Jason's Dream]

Thank you for your ideas. I really appreciate it. We already did the POA's (durable and medical) as well as living and last wills and pre-planned his funeral while he could still voice what he wanted. I think I will do a list of things. I think I will also bring a few ladies in from our church and decribe things that need to be done or things that aren't working and ask them for thier advice in how to make things work better for us. I also think I will get someone in here to do dishes nightly, as well as a schedule for someone to come pick up laundry and run it out and do it and bring it back. The legal stuff, I think I need to do unfortunately though, but at least this will hopefully alleviate some of it, so I can spend quality time with him. <3