Words of wisdom?

[DianeE]

Patti,

This is such a difficult time for you and I'm sorry. I don't have any words of wisdom for you, but will keep you and Larry in my prayers.

Diane

[k.strehle]

i am sorry for what is happening. just a couple of thoughts and im sure they have been touched on...i always thought hospice was end life.....not true. they can also be leaned on for pallative care also. pain management is a big one also and most important quality of life. guess when we went through it for both my folks it was an eye opener. my sister in-law is a hospice nurse and weve talked at length about hospice. they can help and that is what needs to be stressed. its the mysteec (sp) of death and hospice.
i hope you find a good nurse that can talk to your husband.. i was a tough nut to crack but it can be done....guess i was ignorant that way not knowing.

kendall

[otherhalf]

The "good" news?

Well Larry finally agreed to seek the help of Hospice. We seen the Dr. on Friday 8/24. There are no further treatments available for Larry and his "estimate" or "professional GUESS" is that Larry has weeks to months left. I begged and pleaded and explained that I need hospice to help me take care of him. He's agreed to limited care and we've interviewed two agencies so far and have a third one coming to visit today. Of course he continues to work even against the wishes of the Dr. and myself. He's willing to stop working but is afraid he won't be able to support the family. I am currently looking into disability, but so far what I've learned is that it takes approx 5MONTHS!! That is crazy and I know for a fact that Larry will no longer be able to work in 5 months. I've got to get to the office to speak to someone I guess.
Whomever reads this and has the unfortunate end to their battle as this, please get prepared. Don't try to handle all of this at the last minute. There are many tasks that must be completed. I dread this and I wish it were something we had done while he had his health. Who would've guessed we would face something as horrible as this at such a young age. Larry will be 41 in September on the 26th. I am hoping to have a nice birthday with all of his friends there. I am praying that he'll be able to enjoy it.
I've found much comfort here on this site and I must admit when I first came on here, my heart broke for all of "these people" who were facing such horrible treatments. I felt lucky that we weren't like that. I took for granted Larry's health and was relieved that we wouldn't have to be like "these people". Now, all I have to say is thank you...ALL!
Sincerely,
Patti & Larry

[Mom]

Oh, Patti, this really stinks and I am so sorry. Does Larry's employer provide disability benefits? Is that what is going to take you 5 months to receive? I think Larry wants to work because it makes his life normal and he feels he is doing his job as a father and husband..the provider.. My heart breaks for him and what he must be feeling internally. StayStrong Patti, you are going to need all of your resources. Unfortunately, you don't have a choice. Dianne

[jder4]

Disability

Okay. Patti, first check out Larry's disability coverage and see if he has short and long term disability and the length for each. Second, go through his benefits and I mean all his benefits as to what is available; sometimes you might find something you can latch onto and question the crap out of it. Third, talk to a social worker at the hospital he has gone to. File the social security anyway. I looked into this with Mark during the last round and maybe the social worker can offer some help to expidite this. Anything and everything is possible. Unfortunately, on top of all the emotions thundering through, you need to focus in. I know its tough, but you can do it; you'd be surprised what you can find within yourself. We are all there for you.

to everyone reading this:

C'mon everyone! We need to give Patti all the suggestions we can think of to help her out!

Joann

[emilyalex]

Patti - I am so glad that Larry has agreed to Hospice. This is really a positive step at this point in his battle. They will be a help to him and to you. I certainly understand exactly what you are going through and I wouldn't wish it anyone. If I can do anything to help, you have my personal e-mail address from before and you are welcome to use it!!! I can help you in regards to benefits issues, too.

Hang in there. This is going to be a tough road ahead, but you are doing the absolute best you can for Larry.

Emily

[otherhalf]

Disability

The disibility I am referring to is through SSI. He has short term disability through work only and of course, we hope that he will be here long after that runs out. Also, he still has to pay his insurance etc while on short term. I figure this...Larry has worked since he was 14 (hauling hay) in 20 years (until Cancer) he NEVER missed one day due to illness. ALL the days he took were scheduled VC days. He thinks it's taking hand outs but I think he's earned a few sick days and he's paid into SS enough to make him more comfortable and not push himself. I understand he wants to keep things normal. I've agreed all this time; however, when you are in constant pain...well, I just don't think he should push himself is all. I am being selfish but I want him here as long as I can have him. His Dr. told him that working will effect the quality of his life. He should be taking it easy and stay away from stress. Besides, I want to take him somewhere, a place where he can relax and forget (as best he can) that he even has cancer. I want to do it quickly, if things don't progress very fast, I will do it again...and again.
Never more than now has the words "don't put off until tomorrow what can be accomplished today" meant more to me.
Why does it take so much pain to pay attention?
Thank you all for all your advice. I'll come back on again as soon as I can.
Running off now to visit with our third Hospice company.

[Karen]

Patti,
I too am reliveved to hear Larry agreed to Hospice care. You are doing an amazing job of caring for him and looking out for his best interests. As far as work goes maybe his hospice "angel" can help him see his way to ease up on work and lean a little more on those trying to ease him through this time.
My thoughts and prayers are with you and Larry. Stay strong Patti.

[TCLEFT]

Patti,
I've been staring at this thread on and off for what seem like hours now. I honestly don't know what to say or if it would even matter. Larry and I seemed to run close to parallel in how this thing grew in us. I wish I knew why something could work for one and not the other. I wish I could share my fortune with you and Larry. I wish this damned disease didn't exist in the first place. If you need anything, and I'm capable of helping, please call. I'm so sorry I can't offer any more. I truly wish I could.
Mark

[mstlyn]

Patti,

Anthony had SSI in pending status since the end of Feb. They have to determine that a person will be disabled for at least 12 months to qualify and clearly Larry qualifies.

They do drag it on and on though but you could try the Patient Advocate Foundation for help.

I contacted the LAF and they sent referrals to Patient advocate foundation, and I think Cancer Care.

A woman from PAF called me and while I was on the phone she used 3way to contact Anthonys SSI disability worker, to check on the status of the application, and to request a presumptive on Anthonys claim. They are very helpful, so maybe you could try them. I don't know if you can just call them, or go through the LAF first.

We got busy with anthonys AFP increasing, scheduling surgery, scans etc .. and I didn't get back with the woman I spoke to. It's worth a try to see if they can push SSI cause they will drag this out as long as they can.


We also had an application for diability medicaid with the dept. of human services. They too want evidence that a person will be disabled for at least 12 months. Anthonys application was at first denied, but we appealed.
Recently, after Anthonys RPLND the doctors sent letters to department of human services telling them that Anthony would likely need more chemo since his surgery. The appeal board determined that he would be considered disabled for 12 months starting from nov. 2006 and they approved him for state disability medicaid. He also gets a small disability cash benefit.

Larry should qualify for SSI. I think maybe just the right person to push them on it could help.
I also called our state representatives for help. They called my house and talked to me for a good hour or more, and have since called a few times to see what is going on.

Larrys case is urgent .. make some calls and tell them you need their help.

I'll post the persons name that was helping us from Patient Advocate Foundation.


Patient Advocate Foundation
Courtney Jones
1.800.532.5274 ext. 1109

I hope they can make SSI move faster.

Prayers and much love,
Tammy

[k.strehle]

otherhalf

i too dont know what to say. remain focused on what needs to be done. it may be hard with little ones but maybe they are in school . i have sick leave then on to short term disability then after 6 months i went on long term. there is family leave act which is federal. but its good he has agreed to hospice some what. but even look for a person you can trust to keep an eye on your husband so you can take some time off, even a couple of hours to do nothing . story time
i lived blocks from my folks when they were around and i was taking care of them. i found a new start up that would come into your house and fix meals or clean, run errands what ever (for a fee per hr) and that helped alot on my end. i still had to set meds and appts that sort of thing but it took alot of load off plus i could do more at home...there was basically 6 years of taking care of my parents that i didnt do alot with my family( would do it again in a heart beat..just to have them back). i hope it made me a better person. one other thing and that is legal stuff. i had just started chemo back in nov. 06. and im laying there wondering if my wife and family will be taken care of if something happens to me.........i missed not having her on one document. sorry for the ramblin one other thing and that is to lean on hospice and maybe by the grace of god he walks away from this s^%^y deal a stronger man then going into it.
kendall

[mstlyn]

Patti,

I wanted you to know that you and Larry have been on my mind, and in my prayers.

Hope to hear from you again soon.

God bless you both-
Tammy