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My wife originally had breast cancer in 2009 and we thought she had beat it, but she was recently diagnosed with State 4 breast cancer, in metastasized into the bones. We discovered this after her left leg suddenly collapsed under her last Nov, the femur suddenly broke when she was not doing anything strenuous. She had been feeling some pain in that area before it collapsed, but she just thought it was part of getting old. They put a titanium rod in her femur and hip and had her walking on it in a few days with the help of a walker. That leg is healing.
She was having similar pains in her right leg, xrays showed no problems, but it was causing her more pain than the broken leg. We complained about it enough to the orthopedic surgeon that he did an MRI of the leg and discovered the bone cancer tumors. A subsequent full body MRI shows more tumors throughout her body, in the bones.
The cancer center recommended radiation on her left leg, hip and lower spine. She has almost finished the 15 radiation treatments and has 2 more to go. The pain from the radiation has been horrible, she is on heavy doses of morphine and can no longer walk with a walker or even stand unaided. I have to help her do everything and use a wheel chair to move her around the house, to and from radiation, etc. She can no longer walk more than a few steps even with my holding her up.
We don't really need help with housework, cooking or that kind of thing, we already have a cleaning lady who comes in every two weeks. But we need to find someone to help me take care of my wife, and I am at a loss never having dealt with this kind of thing before. I have heard of Home Hospice Care but I don't know much about it. I don't know if medicare or the secondary insurance company will pay for any of the costs. We have put some savings away for something like this but I would like to try and get the insurance companies to help as much as I can. We are both retired and have pensions, but have not started drawing SS. I'm trying to sign my wife up now.
I guess the questions I have are:
1. What kind of home hospice or nursing care is available?
2. Does Medicare or health insurance usually pay any part of it?
3. Should I try to get some kind of referral or prescription from one of her doctors?
4. If so should it be her cancer doctors, she has two, one for radiation and one for oncology. Or should it be her primary care physician?
I would appreciate any helpful information you all can provide.
Hospice is for people who are expected to only have 6 months or less. They can live longer but aren't expected to. No curative treatment is allowed, only palliative care. Medicare does pay. Talk to her oncologist.
The best thing for you to do is to contact a Hospice in your area and talk with them.
They will tell you whether or not your wife would qualify to be in the program and explain everything to you.
Medicare does cover the cost.
My wife originally had breast cancer in 2009 and we thought she had beat it, but she was recently diagnosed with State 4 breast cancer, in metastasized into the bones. We discovered this after her left leg suddenly collapsed under her last Nov, the femur suddenly broke when she was not doing anything strenuous. She had been feeling some pain in that area before it collapsed, but she just thought it was part of getting old. They put a titanium rod in her femur and hip and had her walking on it in a few days with the help of a walker. That leg is healing.
She was having similar pains in her right leg, xrays showed no problems, but it was causing her more pain than the broken leg. We complained about it enough to the orthopedic surgeon that he did an MRI of the leg and discovered the bone cancer tumors. A subsequent full body MRI shows more tumors throughout her body, in the bones.
The cancer center recommended radiation on her left leg, hip and lower spine. She has almost finished the 15 radiation treatments and has 2 more to go. The pain from the radiation has been horrible, she is on heavy doses of morphine and can no longer walk with a walker or even stand unaided. I have to help her do everything and use a wheel chair to move her around the house, to and from radiation, etc. She can no longer walk more than a few steps even with my holding her up.
We don't really need help with housework, cooking or that kind of thing, we already have a cleaning lady who comes in every two weeks. But we need to find someone to help me take care of my wife, and I am at a loss never having dealt with this kind of thing before. I have heard of Home Hospice Care but I don't know much about it. I don't know if medicare or the secondary insurance company will pay for any of the costs. We have put some savings away for something like this but I would like to try and get the insurance companies to help as much as I can. We are both retired and have pensions, but have not started drawing SS. I'm trying to sign my wife up now.
I guess the questions I have are:
1. What kind of home hospice or nursing care is available?
2. Does Medicare or health insurance usually pay any part of it?
3. Should I try to get some kind of referral or prescription from one of her doctors?
4. If so should it be her cancer doctors, she has two, one for radiation and one for oncology. Or should it be her primary care physician?
I would appreciate any helpful information you all can provide.
There is a wonderful home health care agency in Austin. . I Will private message you ...
1. What kind of home hospice or nursing care is available?
2. Does Medicare or health insurance usually pay any part of it?
3. Should I try to get some kind of referral or prescription from one of her doctors?
4. If so should it be her cancer doctors, she has two, one for radiation and one for oncology. Or should it be her primary care physician?
I would appreciate any helpful information you all can provide.
Hospice care in the home usually includes a "team" of people that can come to assist you in the home. It is covered by Medicare for people who are thought to have less then 6 months to live, and who are no longer pursuing "curative" therapy. That is a VERY grey area when it comes to breast cancer, as many women with metastatic breast cancer can do well with ongoing treatments to stabilize the disease for many months and sometimes years. But it is fine to start working with them now, as the future is an unknown.
The oncologist should be very knowledgeable about how to start working with Hospice, so definitely talk to them for a referral/prescription. It should be the oncologist who helps guide you with this, but often the primary care doctor can be an additional contact person to give to the Hospice company you choose... especially if they know your wife well and are easier to contact then her oncologist.
If possible, try to work with a hospice company that others recommend. There are some bad ones out there, and ones that are very "stingy" with their care. Because of how the reimbursement works from Medicare, which is quite low, there is often a disincentive for them to give much care. So definitely look for a Hospice company that is Non-profit. Definitely contact shh1313 for their kind recommendation, and ask friends/colleagues who have been in similar situations if they have any advice. In the best of worlds, the oncologist has a strong recommendation and you go with that.
Online you can often find excellent lists of questions for the Hospice companies
Usually at the top of the Hospice team is a Palliative Care doctor who is experienced with helping with all of the problems that can affect your quality of life - with pain at the top of the list. They usually run the team from afar, and write prescriptions as needed. A nurse will come to the house to meet you and your wife and determine what your needs are. They nurse will check in anywhere from once to multiple times a week with short visits. Things that they can help with are advising on pain, bowel issues, sleep/mood, nausea and more. They can help get the medicines that are needed. If needed, a home care worker can come 2 or 3 times a week to help with bathing and other personal care. Both physical and occupational therapists can come to the home to help your wife and you be as active and safe as possible, get the equipment you need in the home, and do therapy as tolerated. A social worker will come and may help guide you through other support service pathways that you qualify for. Sometimes a volunteer will come to help once a week and sometimes a pastor if wanted.
While all this sounds nice and useful, the fact is that most of the time every day no one will be there to help you. This can be extremely difficult, as it was in the case of my family.... especially if your loved one is having difficulty walking. You may need to hire someone privately to be there with you more often to help with your wife's needs and safety. Now is the time to mobilize family to come and visit to help, encourage friends to call and only visit if they are helpful/not stressful for your wife, contact your church or social groups to ask for help with visits/meals etc..
And if it becomes too hard because you do not have enough support, some hospice programs have an inpatient facility for more assistance. Sometimes we can't do everything for our loved one, even if we want to.
Wishing the best to you and your wife. I am so sorry you are going through this difficult time.
Thank you all who have provided helpful information and best wishes, it has helped me sort through my confusion and lack of knowledge.
Later the day I started this thread, the radiation treatment center did a CT scan of her right leg because of some severe unusual bruising she was having as well as the high pain levels. They discovered that the femur, weakened by the tumors, had broken in two places at the top near the hip joint. No wonder she has been in such pain and could not walk anymore. By my estimate given my records of her pain levels and how she was responding to certain drugs, it appears that her leg has been broken or perhaps started fracturing almost two weeks before the break was discovered. My wife is in surgery right now getting a partial hip replacement.
These kinds of fractures should be something other patients with bone tumors should watch out for.
I am answering my previous questions here for the benefit of any others who might read this thread later.
1. What kind of home hospice or nursing care is available? I have learned that there are several very good live-in "rehabilitation hospitals" in this are which specialize in caring for and helping the patients recover from their injuries and surgery.
2. Does Medicare or health insurance usually pay any part of it? Medicare and her secondary insurance should cover most of the costs given that with two broken legs now, it would be impossible for her to recover at home.
3. Should I try to get some kind of referral or prescription from one of her doctors? The referral will probably come from the orthopedic surgeon who has repaired both of her broken legs.
4. If so should it be her cancer doctors, she has two, one for radiation and one for oncology. Or should it be her primary care physician? Ditto from number 3.
A bone with cancer may not heal or repair itself quickly or well. Beware of weight bearing activities. Bone cancer pain can benefit from a steroid such as dexamethasone. Cancer should be expected in many areas of the body. PET scan. Hospice can provide information as well as products and services.
The hospital should have a social worker who can answer a lot of these questions. If he/she doesn't come around to talk to you before your wife is discharged, ask to speak to one.
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