For those who care for someone with Parkinson's disease
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By truckette22 On 2009.06.30 12:45
Well the nursing home called today and said the last day Medicare would cover was the 9th of July, therefore I have to remove my husband from the facility or paid $168 per day plus expenses. I have called around to get private care and get help from the VA. THe VA said since he is not 70% disabled service connected they cannot help with his nursing home care. If I send him to the closest VA home about 45 minutes away it is going to cost about 2500 per month - so I started trying to find help to come in. I can only afford 12 hours a day out of pocket so that means that I will have to take care him 12 hours a day. THat I could deal with but now they want 700 a month for oxygen to be at at home. Of course, Medicare won't pay because the osygen machine does not show below 88% but his hands and fingers turn blue when he needs oxygen. The nusing home said sorry there was nothing they could do so I guess I am suppose to just let him suffer because of lack of oxygen. Does anyone have any suggestions on getting more help, I have called Counsel of Aging, Medicaid and the VA, but of course we make too much money. Darn I don't know why I worked hard all those years for a good pension. Should I just go ahead and take him to the VA home if I can get him IN???? Help

By lostdaughter On 2009.06.30 13:05
I don't have any suggestions or advice. I just want you to know you're in my thoughts & prayers. This is SO hard & it makes me angry that someone has to be destitute before they qualify for any help. I hope someone else has some ideas for you.

By susger8 On 2009.06.30 13:36
Ugh, double ugh.

Can you get him into a hospice program? They pay for oxygen (my mom had that) plus a boatload of other stuff.

By WitsEnd On 2009.06.30 13:39
VA homes--especially the good ones usually have waiting lists.

Did you call the County VA Officer or did you call the Federal VA office? If you called the Federal VA office your chances of getting help are pretty slim. Find out if you have a county VA office and call them ASAP if you haven't already. If the doctors state that your husband cannot be left unattended, then nursing home care is a requirement and the VA looks both at what you make and what your expenses are--including the nursing home costs. I think you can have as much as $60,000 in the bank and still get VA help. It can take several months to get benefits so that's not going to help you right now but call the county office. You might want to also check with the VFW to see if they have any ideas as well.

Now to the immediate problem. Oxygen readings can vary and it sounds like the nursing home people aren't being very helpful. Do you have a private doctor? If so, I would suggest seeing if the doctor can help or has suggestions. For mom, who was borderline on the oxygen, for instance, they actually had her do some things that would lower her reading before they took it so she would qualify.

Call hospice now. They can get oxygen and everything you need quickly. They can even work in an inpatient admission or provide 24 hour nursing care on a crisis basis if needed. You just need to find a good hospice.

You might also want to see if your husband would qualify for an inpatient hospital admission. If he does and your doctor would do it, perhaps some type of testing could be justified to buy you a couple of days to figure out what to do next.

Also, they have a new machine that doesn't require oxygen canisters. You can probably rent that. Check directly with a home medical supply place. Some are better than others and they might can help.

By truckette22 On 2009.06.30 18:20
Thanks for all the suggestions. I have called the County VA and he has filed the Aid and Attendence, but it takes 4 months to get approved or disapproved. The doctor said he is not ready for Hospice. The Social Worker at the VA did tell me for the nurses to walk him and then take his oxygen level and it should go down so guess we will wait till his hands turn blue and then have him walk-t hat should do it I hope. I called the Counsel of Aging but they never called me back. Called my Senator, but never returned my call. I just love-voice mail. I did check with the VA home and we are at the maximum pay level. I will hope that people call me back tomorrow. I am going to call and make an appointment with the VA Home and hopefully they can get me in quick

By lostdaughter On 2009.06.30 18:47
It's so frustrating not to have your calls returned when you're under a deadline & desperate for help. I went through a similar experience about six months ago. I just kept calling, calling, & calling again. I emailed everyone I thought might be able to help. One lady who returned my call but wasn't in a position to help offered advice from her own experience. She told me to get Mom on the waiting list for every nursing home I thought was halfway decent, even if we decided not to take that route at that time. I found an email address for the Area Agency on Aging & they called me with advice, in spite of not being able to help. Bottom line was that a person has to be destitute before qualifying for any assistance. There are no programs to help middle class people who are able to make ends meet but have no extra money.

I think I'd be tempted to BEG the VA to put a rush on his application. I think it's a shame that our veterans have to wait that long to find out if they quality for help.

By caregivermary On 2009.06.30 18:49

I went back and read some of your initial posts. I'm no expert but based on the condition of your husb you related in April, I can't imagine why the Dr. would say he is not ready for hospice. The Dr DX end stage PD initially-didn't he? If that is still the DX and your husb is bedridden, incontinent, fully dependent, has dementia and all the other conditions you mentioned originally, I would get another opinion. I think you can contact Hospice agencies directly and have them evaluate the situation. In turn they will contact the Dr. or maybe use another Dr. to move forward. I'm so sorry you are being put in this position.

By gilly On 2009.06.30 20:43
I hope you find some solution soon. I don't know how people manage the nursing home expense. I will have to take care of my husband at home. Luckily I have grown children who live with us. You have my prayers.

By susger8 On 2009.07.01 08:19
I agree with caregivermary -- don't be too quick to give up on hospice. Many doctors are reluctant to say a person qualifies for hospice because they feel it's "giving up." But there is no longer a requirement about how long the person is expected to live (and who can accurately judge that anyway?). The person just has to have a terminal illness that is not expected to improve.

For your own sake, please don't take the doctor's word for it -- contact hospice yourself.

By WitsEnd On 2009.07.01 09:17
I agree with the folks who said don't give up on hospice. Unfortunately all doctors are not created equal and there's a few out there that are missing a vital organ known as a heart. Call a hospice yourself. Ask them if they know of any doctors who can do a referral. If the first hospice can't help you--call another. Persistence pays off and all it takes it the right call to someone on their staff who has a heart and will help you. Trust me when I say if you are persistent on this you will find a doctor willing to write the orders.

All medicines, oxygen, hospital beds, adult diapers, etc. relating to the Parkinson's diagnosis will be covered if you can get him admitted to hospice. If calling the hospices directly doesn't work, identify a complaint and take him to the hospital ER. They have social workers there and different doctors. Complain about an unusual altered state and his hands turning blue. There's obviously some type of circulatory issue going on. They will do some blood work and a cat scan to rule out a stroke or other issue. They may or may not admit him. In any event, see if you can get the ER doc or one of the specialists he calls in to write you hospice orders. Sometimes they will and sometimes they won't--but nothing ventured, nothing gained. Also, the social workers at the hospital might have some contacts to help you identify area nursing homes that are good and help you solve the care problem. They can help you make some of the calls.

Don't limit your calls to just nursing homes. Look for personal care homes. Those are smaller outfits who can take limited patients in a home environment. Be careful--some of them can be horrible while others can be better than the larger nursing homes. It's another alternative and it is usually cheaper than the larger institutional nursing homes.

Also, FYI once you get him on VA aid you are also entitled to the VA covering his prescription medications. There may be some debate, but the VA will cover prescriptions written by your physician (you don't have to take him to a VA hospital.) The VA has their own formulary list so you may still have to buy some of your own meds if what you want or need isn't on their lists--but when money is tight, every little bit helps. The VA county office can help you work through the red tape on this. Never try to do it on your own with the Federal VA directly. As far as I am concerned if Obama wants to reform something that would improve health care--he should start in his own backyard with the Federal VA offices.

Unfortunately, begging the Federal VA won't help them work any faster. They do what they do. The county VA office will do what they can for you. With luck it may be less than 4 months. They told me it could take up to 6 with dad and it only took 3.

The walking is a good idea if he's able and it's not too much of a strain. Just sitting him up in a chair for an hour or two or having him wave his arms in some cases could be enough to drop oxygen levels enough to qualify.

Try calling your local TV station's consumer reporter helpline if there is one. Sometimes they can help as well.

Also, don't rely on what just one home medical supply place tells you about the oxygen. Some of them are worse than snake oil salesmen. Call a couple and do some comparison shopping.

Don't give up hope. Begging everyone but the federal government does work and there's some really great people out there. All you have to do is make the right connection.

Also, don't forget to pray. When people fail you God doesn't. He may push you to your limit--but thankfully He answers prayers.

Hang in there.

By truckette22 On 2009.07.03 17:13
Thanks for all the advice. Since I posted last I have called my Senator's office and his clerk that works with VA told me to be on the doorstep of the County VA Monday and make them file a claim on Monday. She said a new claim with the Parkinson's don't try to file for more on the PTSD. I also called the Social Worker in Cleveland OH on the VA help and she called the Hospice company and they did an evaluation the same day which was yesterday. The nurse that came was so nice. She stated he will be on Hospice and her company will do all the leg work to get his nursing home doctor and the VA doctor to sign off. He will be able to stay where he is and they will come in 5 days a week. She stated that he has less than 6 months and is already losing alot of muscle. She said this is a sign that the body is shutting down. She ask me about family and I told her his son was here last weekend and then said he will try to be back before New Years. She said well if he doesn't get here til New Years he will miss his father's funeral. She was blunt but I am too so we got along fine. She also told me the VA will pay 100% of the bill and I will not be paying anything. I guess all those prayers from the forum, me and my friends and my parents and their church family finally came thru. I have grown up in a Christian family and was always told God will not give us more than we can handle so keep praying and things will work out. Just don't give up on prayer. Thanks again

By susger8 On 2009.07.03 18:31
I'm so glad everything came together, after all the problems you had. By all means, take advantage of the hospice people. They can be extraordinarily helpful -- to the caregiver as well as the patient.

By annwood On 2009.07.03 20:09
Sorry that you have had to go through so much but look at what you accomplished. Give yourself a pat on the back. Hospice is wonderful. You don't necessarily have to have a life expectancy of 6 months or less but rather a progressive disease with no cure. I encourage many of you who need help to get in touch with Hospice. As truckette said they will do an evaluation and do all of the leg work to get the physician's ok.

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