As if it couldn't get worse! I've not lost my job. Heartless people.
No health insurance, no salary, no pension and a husband who is terminally ill.
What is wrong with this picture. I'm so low and scared.
PSP has taken every bit of money we have and it's still not over with.
I will NOT tell Charles because he will stop eating and hasten his demise and I don't believe in suicide or anything of the sort.
Such is health care in America. Unless you are on Medicaid, you are s......d.
Cuttercat
C, is Charles on disability? And you need to apply for unemployment right away. Get an appt at the Social Services office and let them tell you what help is available.
My deepest prayers are with you, dear one. Going to try and call you this afternoon. Sending hugs.
Ann
No disability, Unemployment is all I'll get. Tomorrow hopefully.
Cuttercat
Hi Cuttercat, so sorry to hear of all the bad things you are going through. You are I'm my thoughts and in my prayers. Hope you get the advice and help you need from Social Services. Good luck. Don't give up hope.Hugs and much love.
Teeker xxx
What a horrible start to the year for you, thinking of you both, lots of love and hugs xxxxx Yvonne xxxxx
Heartless is right, apply for unemployment insurance as soon as you can..and see what help you are able to get.
Hugs
Paola
Oh that sounds awful, hard enough fighting for things where we have NHS(such as it is) I know know what it's like to be kicked when your down,
Love Debbie xxx
Gosh, I am so sorry. I can imagine the knots in your stomach and waking up in the middle of the night with feelings of dread. Right now, It's impossible to imagine, but things WILL work out. I have found that when I seek help, even if where I go, can't help, they have suggestions of where else for me to get help. It all takes time. My son, single 54 years old, was recently DX (Jan 4, 2017) with PSP. I am a single mom who lives 15 minutes away from him.......trying to sort it all out.
I'm so sorry you're going through this. I know what you mean. If you have anything, you can't get assistance even if you show you need it. The system wants us to be destitute. Is Charles a veteran? The VA can help. Hang in there. I agree about getting to social security asap. Good luck. Try to care for yourself too, you're going through a lot.
My god we moan about our lot in the uk but what a system you have that lets you down so badly. No help to you but thinking of you.
Julie x
Oh my goodness that is a tough blow. Hope some of the suggestions from your fellow Americans will be of help. Thinking of you and hope there is soon a little ray of sunshine.
Take care
xxx
Oh my goodness. Such a bad system. You must be nearly out of your mind with worry. Hope you manage to get some kind of unemployment benefit soon. God bless. Marie
I saw your reply that Charles is not on disability. May I ask why? I agree with Babowen, contact Social Security and see what is available. Even if you can get palliative care with Charles, should help with his expenses.
If Charles has had PSP for at least 6 months, then he it eligible. They actually fast-track PSP, CBD, MSA, FTD, and many other diseases, so instead of waiting for 2 years to be eligible for disability, you only wait 6 months. And if it's been longer than that and you apply now, they go back in time and reimburse you all the way back to the 6 month date. Just make sure you can show when a doctor first diagnosed with the disease, even if they first thought it was Parkinson's. Here is a link to their site: ssa.gov/compassionateallowa...
Sorry about the job loss. How horrific. Definitely set to the unemployment office.
Best wishes, Ketchupman
Wow, thanks. No one told me and I've been digging for info for years.
Ketchupman you are the best. I'll let you know what transpires, but with Hospice already in the picture I don't know.
Best,
Cuttercat
Hospice should have no impact on the decision by SSA. If anything, it will make it a stronger case. I didn't find out about this until about a year and a half after my wife was first diagnosed with PD. The doctor who told us she had PSP informed us to apply for disability. I was shocked to receive a lump sum check, where they dated it back to our first doctor visit with the PD diagnosis (minus the 6 month waiting period). And if he's not on Medicare, it takes 2 years of being on disability before he is covered, unless he has already turned 65. My wife was only 48 when diagnosed and passed last July, just 55 days short of turning 55.
Ketchupman you are awesome! Thank you for your infinite wisdom. I didn't know about ssa for psp and early eligilbilty either. Thank you so much!
What is ssa
Great info! I didn't know about the 2 year wait for Medicare. What if the dx is "Possible CBD" do you have to wait until it is confirmed to get ss disability?
Probably has to be confirmed, but worth starting the process.
Thanks!
Charles is now 67 so when I called SSA they said he's not eligible. Oh well. At least I tried.
Thanks,
Cuttercat
You probably spoke to someone who doesn't know what they are talking about. But disability is basically for those who are of working age (under 63) who can no longer work. So surely at age 67 he is already receiving Social Security. And once you hit 65 you are eligible for Medicare.
Sorry you are having such a tough time! I was checking on finances recently and told that Medicaid may be available to you when things like this happen. Our futures can change so quickly when we are dealing with a disease that is so unpredictable.
Prayers,
Alicia
I am so sorry. Do you have a support system such as family, community, or church? Maybe this would be a time for them to reach out to you directly--or an online fundraiser? If you have one close friend who could put it into action for you, maybe that could be a start. My congregation has people who sign up to bring meals to families who are hit with a sudden tragedy. Perhaps there's something local like that, which could be of some help.
That just sucks. Health care in America... not going to get any better with the administration. Get on the phone and get your state representative or their equivalent working for you ASAP.
Life can be so unfair, talk about kicking a man when he's down. I'm so sorry that you find yourself in this position CC and other than offer my love and thoughts, there is nothing much I can say to your dire situation. I do hope that you are able to find some kind of financial and social support, surely they can't just leave you to cope on your own without it. My heart goes out to you. Try to stay strong I'm sure that there must be something that someone will have to do to help you.
Big hugs Kate xxx
I assume that you are now trying to get on Medicaid? Also is your husband on SSDI or SSI? Have you applied for SNAP?
I am sorry all this is happening to you, but apply immediately for everything you can.
CC, Quit your damn job....or have you and that's why you have no damn salary....Okj well you know I quit my job 3 years ago. B didn't have a pension and that is what they looked at....so we got some funding .......he became eligible for medicare last May but we had private insurance....they dropped us so now medicare picked us fully up. They are funding hospice who may help you. If they assess your husband based on terminal illness then he will get all sorts of things and maybe free might or at very little cost might i add.....Go to Area Agency on Aging. I do believe it is a Federal funded agency. It will guide you to through the process and find you the things you all need....CC we don't have much here in America, but we got to use the stuff we do have.....don't go it so alone anymore.....These last 12 to 21 days have been eye openers for me. I just read Babowens post....do all that she says......I think it will work for you!
much love ,
AVB
I'm in Raleigh. I hope to get unemployment for 3 months but then I'm on my own. No insurance, no job, no money, no pension, etc. But I'm home with him. Hospice doesn't provide any real help though. Only a CNA three days a week for one hour. It's all on me and that's why I can't go looking for work. I have two caregivers who help who are so wonderful but only two hours during the week.
I'll call the Area Agency on Aging. Call SSA for disibility but they cut people off at 66 and he's 67. Another door shut. But I'm happier now being home with him. It will only get harder. Ok, I sell the car and the house to pay the bills and end up with 0 but it will be worth it. I'm no martyr but he's my guy and I'm here for him.! Bless you.
Cuttercat
PSP - a rare disease in the family
Mum PSP , continuing health care.
Co Enzyme Q-10; starting it today.
