Bringing Sister Home for 'End of Life' Care

Updated on August 31, 2010
K.D. asks from Clark, NJ
15 answers

My sister has terminal cancer and likely has only a few months to live. As a Medicaid recipient, she lives alone in a very poor rural community in West Virginia and is not getting very good care. She has just agreed to be transported to a facility in NJ...so now comes the red tape. I have several questions for anyone that has faced anything similar. Technically she must be a resident of NJ for thirty days before Medicaid will pay for her to be here. Has anyone had experience circumventing the thirty day limitation in a case where time is of the essence? What facilities would you recommend to provide care in NJ? And we have researched transportation costs, as she must be transported by ambulance at this point. The quotes we have heard range from $2700-$8800 and it is not a covered expense. If anyone has a suggestion for less expensive transportation, please share it. We are desperate to ensure quality care for the time that we have left with her. Thanks for any suggestions you can offer.

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So What Happened?

Thank you so much to everyone who offered advice and compassionate thoughts and prayers. It seems as if this may all work out due to the diligence of one individual...the social worker in the nursing home where she is currently staying. She has done much of the negotiating with state agencies on our behalf...she is worth her weight in gold! You would not believe it but we may have her here in NJ by this weekend. I will keep everyone posted..again thank you for your thoughts and prayers.
K.

More Answers

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E.M.

answers from Johnstown on

The American Cancer Society provided a lot of things for my mom, free of cost. They even provided transportation for her. I'm sure it depends on the branch you're dealing with, but it doesn't hurt to look into it.

3 moms found this helpful
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S.M.

answers from Asheville on

Have you checked in with Hospice? It sounds like she might be eligible for admittance. They are a huge support and patients and family. I think I'd start there because they will oversee all of her care. Some Hospice's are for-profit and some are non-profits. I'm not sure how/if coverage differs.

I'm sorry to hear about your sister. She will most certainly appreciate your help. Best to you both.

ps - I didn't mean to get ahead of the situation in suggesting Hospice. I realized you didn't mention if she was going to have further treatments or not or you may not know at this point. - Blessings.

1 mom found this helpful
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T.H.

answers from Kansas City on

Wow, this is a lot for you to handle. I am so sorry for you. Have you looked into hospice? I would start there. I do not believe they have any of those stipulations and they will work with you on payment plans and some things are very low cost. If they can't help you, which I would doubt, they can probably help you understand some of the red tape with which you're dealing. I hope you get it resolved easily so that the final days with your sister can be as comforting as possible.

1 mom found this helpful
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L.K.

answers from Kansas City on

I am so sorry. I don't have any thoughts, but wanted you to know that all of you are in my prayers.

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K.K.

answers from Minneapolis on

I would contact hospice in WV and NJ see what they can do for you. Talk to the faclilty and see if they know of any help.
You said that at this point she needed to be transported by ambilance. Is it that she is on IV meds, just that unstable, or that would be more comfortable? Driving yourself and hiring a RN would cut that by a ton. I do stuff like that (not an RN) but I know of RNs that do that in my area. Hiring an RN for a few days to get her to you my be an option.
And again contact hospice they are great people that will help your sister and the whole family through the end of life process.

C.M.

answers from New York on

Hi K.,

I'm an ex-EMT and nursing school student specializing in care of the elderly, handicapped and terminally ill. If your sister can ride to NJ from WVA sitting up, I would be happy to go get her and take her anywhere in NJ for $400. Let me know if I can be of assistance.

C. Moore
"Grams"
from the Pocono Mts. of PA
###-###-####
[email protected]____.com

M.V.

answers from New York on

hi K....i don't have an answer to your question, but i want you to know i feel your pain and hang in there...=)
i am a GIST cancer survivor and have an idea of all the different emotions and how the family is affected. i was lucky that my tumor was removed whole and didn't matastisize. my thoughts and prayers go out to u....<3

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K.B.

answers from New York on

K.,
You have a lot on your plate right now. I'm a social worker that used to work with terminal cancer patients in NY. Susan gave you all the links that I would have helped you with if I were still in the field (I'm home w/ my child right now). It sounds like you are not looking for in-home hospice. There are many hospice agencies that provide care within facilities all over NJ depending on where you live.

If I were you, I'd contact the people at Cancer Care (see Susan's link) by phone & speak with one of their experts. They can be very helpful when it comes to compartmentalizing everything you are dealing with...including the financial stuff (ie: emergency Medicaid)... Good luck...

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J.P.

answers from Buffalo on

I agree with the others, Hospice is a wonderful thing. As for the transportation issue, there is a group called Angel Flight. They provide transportation for people in situations like yours (I believe.) I don't know what the stipulations are, but just wanted to suggest an option. Sending prayers your way for the blessings you need to get through this!
http://www.angelflight.com/

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S.B.

answers from New York on

Hi K.,

I'm so sorry you and your sister are going through this! I googled "cancer care for the uninsured New Jersey" and came up with the following links. I would go to each website and start making calls. The more people you talk to, the greater the chance that you will find what you are looking for.

www.Cancer.org Get the Latest Data and Information From the American Cancer Society.

www.cancercare.org/

www.state.nj.us/health/fhs/documents/cphc_annual_report_f...

www.lvhn.org/billhelp/Resources_For_You%7C1180

www.cancerlegalline.org

Another great organization is Gilda's Club www.gildasclub.org

I don't know if this applies at all but Johns Hopkins has a second opinion cancer care program. Their number is 410-550-HOPE (4673).

Please don't hesitate to ask more questions or just turn to us for support. What you're doing for your sister is wonderful! You have my prayers.
S.

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J.C.

answers from New York on

I agree that you need to contact Hospice. My Father in law recently had end of life care at my home and Hospice was UNBELIEVABLE! What a terrific thing they do. They help the entire family through the process. Give them a call ASAP as they will need time to cut through the red tape as well asuming they can be of help.

Best of luck to you and your sister.

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L.L.

answers from New York on

Wow...I don't have any advice but just wanted to say how sorry I am for you and your family. Life is so precious and short, God Bless You for trying to get her home to spend the rest of her days. I wish you lots of luck and hope the process goes smoothly so you can get her home. :(
Lynsey

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V.B.

answers from Houston on

This makes me so sad and I wish I knew how to help you. I was diagnosed with breast cancer in December and I just finished chemo about 6 weeks ago. I have a great prognosis and, while my ordeal was difficult with a toddler and a preschooler at home, I am so sensitive to the fact that I was really lucky and it was caught early. I will say a prayer for you and your family and I hope that you are able to find a way to make your sister's final days comfortable. I would contact the American Cancer Society and Hospice for sure. Surely they must have some advice on this kind of situation! This truly breaks my heart! Best wishes to all of you. May God comfort you during this time.

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C.D.

answers from New York on

call visiting nurses of NJ I USED then when mother in law put on hospice
but she lived in nj they are so help full even suppplied a low cost aide live in
hang in there its hard good luck

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D.P.

answers from Pittsburgh on

I don't have any specific info for you...just wanted to suggest that you talk to a social worker at the NJ facility where she will be residing. They can be a wealth of information as they deal with similar situations every day.
Good luck. What a wonderful thing to have her closer to you. God Bless.

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