Drowning in paperwork!

[CoachMeg]

Things have been crazy. Paperwork for living trust. Paperwork for disability retirement. Paperwork for Social Security. It seems to be a never ending, ever growing pile! And today, it is weighing heavily on my wonderful husband. He feels himself getting worse everyday and I know he is scared. But, can't quite put a voice to it. Although, he doesn't have to. I wish we had more time.

More time for the paperwork so we can have more time for the love. ALS is absolutely frustrating and miserable and a horrible disease.

Glad to have a ranting forum. My Mom tells me to buck up and keep the house clean. I will feel better. yeah....don't think so. Trying to keep a smile on my face and stay strong. But fear even my best friend is tired of hearing me whine. Which I try really hard not to do, but it is my reality right now. (sigh)

Ok, enough of this pity crap.

Is it 5 o'clock somewhere?!?!:lol:

 

[John1]

Maybe your mom could help out by cleaning the house for you and give you a bit of a break.

 

[CoachMeg]

I wish she could. But she is not strong enough to do what needs to be done. And, she would drive my husband nutso if she did come to help. My MIL is great and totally gets the concept of working full time, being a Mom, and now, taking on more responsibility with my husband. My Mom doesn't get it.

Onward and upward. Thanks for the reply.

 

[Ladyinn]

Meg, it is always 5 o'clock somewhere! So this is the place to come and whine (with or without your wine) whenever you need some support. We all have those times when we feel like screaming at God or kicking the dog. Me, personally, want the world to stop so I can get off when the disease takes me over.

Remember this saying -- "How do you eat an elephant?" Answer "One bite at a time."

Live one day at a time and tackle one thing at a time when it comes to the paperwork. As far as the housework -- nobody ever died from a few dust bunnies or a dirty floor. Spend time with family and your pALS making good memories -- And, take care of yourself -- bubble baths were my release as a caregiver. Now I listen to music and count my blessings when the world keeps turning.

 

[Alyoop]

I never talk about my medical problem with my friends. Infact when they ask I just say fine, and change the subject. I use their company, and friendship, to be the place away from the fear and frustration, that I feel, so much of the time. Their company is the place to forget, a place to pretend that nothing has changed.

I use this forum as the place to talk, the place to unload, and the place to know that my friends here understand. Keeping it separate is working well for me.

It is ridiculous, that at a time you and your husband need to spend quality tine together, you get burdened with administrative " stuff".

 

[momofsixkids60]

Meg, Yoou memtionned your Morther couldmn't do the heacvy things arounmd the house....What abnout the paper work? Is thjat somethimg she could possibnly handle? If not, ask jer to cook you some meals; eat sone, freezxe some. Do yoiu havce kids? Aslk her to talke them for a few houers a dayu or fdor the weelend.
Amnd likle Dianne said, it's alwayus 5 o'clock somewhjere!
Semnding hugs.
Kimbnerly

 

[abbas child]

I used the same method with my friends as Aly--I said "fine", until after a few years went by (and it became good to talk about it). Your regrets will never include a dirty house, Meg. I hope you can feel free to rant here, ignore your mother and have the perfect candidate offer to help you with your many duties. I found good friends to be priceless.

But I really did love John's advice!

 

[hopingforcure]

Meg,
I think someone would be glad to help you with your housework. I am a big time cleaner and organizer, it kind of defined me. Well, I look at it this way, If I were well, it would be my honor to help a friend out in need. Cleaning and helping them would be a pleasure.
I sure think the kind of people that you guys are, well someone is out there just waiting to help. Maybe you could put someone(mom even), in charge of getting other's to help with chores, and such.
I can bet so many peoplea are out there waiting for the chance to be good..

 

[AKjo]

I haven't needed help yet, and haven't tested it, but I came across this on the MDA website, and it looks like it could be really helpful to organize friends and family who are willing to lend a hand:

https://mymuscleteam.lotsahelpinghands.com/info/

I remember the first couple of months after Gary's diagnosis, and the piles of paperwork there was. Sooner or later it does get finished - just not fast enough. With us, when Gary was granted Social Security (and automatically medicare kicked in}, I was immediately and unexpectedly dropped from his health insurance, and hadn't even thought about that happening! Don't forget to think about your own needs in that respect.