On Medicare and need home help?

[nancyconklin]

My brother-in-law is in the last stages of ALS. They are paying for help out of their pocket and it is eating through what little they have fast. His wife does 24/7 most of the time and she is TIRED and weary? Does and can Medicare provide any kind of help. Right now they have some kind of hospice coming in 2 hours a day, 2 days a week. They tell them there is NO help through Medicare. I find this hard to believe. Looking at the Medicare website it sounds like there is help. How do we go about getting help? Mainly what they need is night time help so his wife can get some rest. He's scared, demanding and it's very hard on her, too. Her and some family members can fill in some hours, but they need major support at this time that won't cost them everything they have. Can anyone help?

[brooksea]

I'm sorry to have to tell you that Medicare does not pay for home health like you would expect. That is reserved for instances like a discharge from hospital for follow up care on a doc's orders. Why will hospice not up the level of care? Do they have a facility or are they one of those that is more of an agency? Medicare will pay for respite while your brother-in-law is in a hospice facility.

Have y'all checked with your local ALSA? Some will provide respite.

Good luck to your family and welcome to this site.

[caldona]

I thought Hospice did more than that. Medicare will not pay but Medicaid will get rid of the money if it would let you qualified for Medicaid

[Susan10]

if you're 'getting rid of' the money, be very careful. there is a 5-yr look-back at how the money was spent. you can't just transfer your assets, for example. you have to have less than $2000. there are allowances for the home, for the spouse, etc. you might want to visit with an elder law attorney or an insurance agent who specializes in seniors. we prepaid all final expenses for my mom and that helped a lot. it also was a blessing not to have to do all that when she did pass.

[notme]

It's sad that Medicare doesn't help more than it does. As suggested, contact the ALSA in your area for respite care so she can get a little bit of a break.

Some people have also added insurance for the type of care he needs. The nice thing about medicare is that there are add-on companies that do more for you than general Medicare. It's generally much better than medicare--and ALS isn't a disqualifying condition.

Good luck to you.

[Bill Simpson]

I am so sorry to hear of the problems, especially in such a stressful time. Your doctors should be able to write a prescription to suit your needs. The diagnoses of ALS automatically qualifies for disability. Again, all in how your doctors write the script. Check to see if there is a local (or state) ALS Association. They should be able to assist in providing your needs or connect you with the appropriate agencies.

You are not alone with these issues and there are agencies to help you. I did a quick search and found this site: Home - The ALS Association Oregon and SW Washington Chapter

Good luck to you in your search.

[nancyconklin]

Thank you all for your help! It is GREATLY appreciated. I am still very confused because I have several documents from the medicare handbook and the medicare website that indicate home health services are available as well as some hospice. It says NOT 24/7, but 'intermittent skilled nursing care, you must be under a doctor's care, you must be homebound, and a doctor must certify that you're homebound'. My brother-in-law is all of that. We are just looking for care so his wife can get some rest. This is wearing her out. They are currently in a 'hospice' program where they come 2 hours a day a couple times a week. They really don't do anything to help the wife except those couple of hours of relief, they more or less evaluate him, check over the prescriptions and care. These hospice people have told them there is NO other help. And they also said if they do choose to get 'other' help than they (Hospice) cannot help them. They told them there are no avenues through medicare. I feel like I'm hearing that from most of you, too. Yet, I see the print-outs and the website that indicates otherwise. I have calls into the local ALS associations locally and am waiting for call backs.

Thank you all again.. so much!

[st123]

You're a good sister-in-law to be researching this when his wife is overwhelmed. Sure hope you find someone who can help them get what they need. I found researching the VA, Medicare, Medicaid, and Social Security documents very frustrating. Hang in there!

[brooksea]

Nancy, the language Medicare uses is quite confusing, but even if the doc were to write an order for home care it would be minimal.

This is from a pamphlet re: HHC

"Home health nurses provide direct
care and teach you and your caregivers about your care. They also
manage, observe, and evaluate your care. Examples of skilled nursing
care include: giving IV drugs, shots, or tube feedings; changing
dressings; and teaching about prescription drugs or diabetes care.
Any service that could be done safely by a non-medical person (or by
yourself) without the supervision of a nurse, isn’t skilled nursing care."

http://www.medicare.gov/publications/pubs/pdf/10969.pdf

I would check with other hospice agencies in the area. It wouldn't hurt to interview a couple of different ones to determine what level of care they can provide. They are usually more than willing to talk to anyone about their services. The current hospice doesn't sound like hospice at all.

[caldona]

Medicare pays for me to have a shower every other day or three times a week because my doctor prescribed vitamin b-12 shot twice a week my legs never hurt.

[AlabamaGal]

Hospice helps my PALS with baths every day. A nurse comes out once a week. There is no custodial care though. We have a sitter once a week so I can work one day a week. Otherwise, we are dependent on hospice or church volunteers and those are not regular. It is so hard.