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Big Problem, Need ideas

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I haven't posted in awhile, but I read every day. My MIL was in the hospital 3 weeks ago with abdominal pain. They found mild diverticulitis and also that the cancer had spread further - it's in the kidneys, a small part of the liver and spine. She was put on heavy anitbiotics, a pain patch and morphine. She had two seizures. After that, she was unable to speak or move her right hand for a week. She then started to talk alittle. It was decided that she should go to hospice and she was put in a local well=known, facility which has some hospice beds on their acute medical floor. Its been two weeks now, and she has suddenly improved in that she is talking well (although she forgets alot) and is using her right hand much better. She is only on the patch for pain and her regular meds for seizures and the steroid. She is not able to get out of bed and won't use a bedpan, so is "using the bed".

THis facility has decided that, since her insurance is running out on April 15, she is doing well enough to go home. She lives in a two floor apartment, ALONE, with two small dogs. The Hospice Nurse who coordinated this whole thing says that her children WILL HAVE TO TAKE CARE OF HER. Well, each of the kids has their own homes, some with families, and all have full-time jobs. All the kids have visited her almost every day of both hospital stays and have been very attentive and caring. However, all are very upset by this. MIL refuses a nursing home setting.

How does this Hospice representative think that my MIL can be sent home without full-time help? Her regular insurance from her job ended almost 3 weeks ago and she only has medicare now. She has no money to hire full time help.

Does anyone have any ideas for us?

My husband has been extremely upset and stressed since this cancer thing started in Nov. 2003 and this is causing more. I am really worried about him, but he refuses to see his doctor about help.

THank you for any help you can give.


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This is such a difficult time I'm sure. Is it financially possible that any of her children take a "family medical leave" from work. By law, employers must grant you this time. Maybe her children could alternate family medical leave. If this is not possible, does your MIL have some friends in her apartment complex that might volunteer some time? Maybe some retired friends. If so, then her children or their spouses could alternate staying at night. I know this is hard. I have been there before. Luckily, I am a stay at home Mom right now so I will be able to take good care of my Dad when he is at the point that your MIL is at. I have worked during the day, then went straight to my grandmother's house to take my turn spending the night with her. It was difficult, especially since I had small children. It was hard on my hubby to do everything at home. In the end, it made us stronger as a couple. If there are absolutely no other options, a serious talk with your MIL is in order. She might HAVE to go to a nursing home. I hope that you guys can find a solution that works for everyone.

I'm sure that this has been of little help to you. I just wanted you to know that I do sympathize with what is going on.......I've been there. I will be remembering your family in my prayers.


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Guest cheri

Wow...you guys are dealing with a lot of issues! I will keep you in my thoughts and prayers.

I might suggest that you meet with the Social Worker/Community Resource Coordinator (called different things) and see if she qualifies for any other social assistance or if there are any community programs that might be helpful to her. If you get no help there, contact your MIL's physician and see if they can recommend a hospital social worker or someone in their office.

Your mother should qualify for home health care since she is a homebound Medicare patient. Ask about having home health aides coming and giving your mother a daily bath or possibly 4-5 times a week. They will help with her personal care. Also ask for a home health nurse to come and monitor her disease and health condition. She may qualify for weekly, bi-weekly visits or more. I don't know her specific condition to warrant how many recommended visits, but the home health agency can direct you.

What about Catholic Social Services? Meals on Wheels to have her receive a daily meal? Does she belong to a church/synagogue? Do they have any volunteers to sit with your mother? Does she qualify for Medicaid?

Would she consider an assisted living facility? It's not like a nursing home...maybe she would be more comfortable there and it would give you peace of mind knowing that medical staff is there if she ever needed it.

I think my first step would be to get someone from a social service agency involved to let you know what's out there and what she qualifies for. Home health is a safe bet, though.

Hope this helps!


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Cheri had some good ideas. Here is another thought. I don't know your location but here in California there is a program called "In Home Supportive Services". It is a program where the person in need can hire someone (even a family member) to come in to the home and help out. The number of hours allowed, and paid for by the state, is based on the presons need. You might want to check with your states social services to see if they have anything like that.

I worked within the disabled community for many years. What I've found is that most end up combining a number of different services to achieve the care they need. It would be nice if there was a more ceteralized approach to these services, but there usually isn't so your going to have to "shop around" a bit.

Check in your phone book under the government listings and see if you can find a number to social services and see if you can get a social worker to help you through the maze of services. As a matter of fact your hospice should have social workers available to you (I am on hospice and have a social worker assigned to my case who I can call when needed). If they don't have one and you have the ability I would say it's time to find another hospice (and I DO realize that might not be an option).

The other thing I don't quite understand is if your MIL is on medicare how is she "running out" of insurance on the 15th? If she is currently paying for hospice under another insurance Medicare should pick up the slack on that after the other insurance runs out. You may have to switch hospice companies, but considering the rather uncaring attitude of the hospice you have now that may not be such a bad thing.

Good luck with all this. I know it's hard to keep the clear head needed to make these decisions when a loved one is ill. I've been there with my Mom and my wife. You are in my thoughts and prayers.


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I'm not sure what state you live in but I will tell you that I know both Washington and California pay for live in caregivers. In Washington it is covered by Medicaid. I'm not sure who pays for it in California but it could be Medical. No matter what state you live in I"m sure that they too must have a program that would allow and in home caregiver. Do as Dean says and get in touch with Social Services not only can they help you with a caregiver (even some insureance companies might pay sense it is much cheaper than a nursing home) but they can help you find a visiting nurse to come at least twice a week and physical therapist as well. There are many options but you have to search for them. Social Services is the place to start because they seem to handle most of these things. Good luck. I hope you find what you need soon. Lillian

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Dean is right about insurance. When someone goes into a Medicare-approved hospice, the hospice has them sign over their health benefits to them, and they are paid directly by Medicare. The hospice must agree to accept Medicare reimbursement as their full payment. There is no reason why your MIL should need anything except Medicare (Part A). Note that the hospice must be Medicare-approved.

Website that gives facts about Medicare hospice benefit in normal English: http://www.hospicenet.org/html/medicare.html

Best wishes to you and your MIL, Karen

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I'm so sorry to hear that your MIL is not well and it sure is difficult. It sounds like the others have some good advice. I had to quit my job to care for my grandmother, but her and I were so close I wanted to be with her and couldn't bear the thought of a stranger leaving her side...I was able to manage just bearly...almost lost my mind..lol... and with about 3 other helpers for 3 years...she was paralyzed from neck down..total care but her mind was working full speed! I sure feel for you and am sending warm prayers and thoughts for her care and your family.


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Thanks, Laurie, for your kind words. There is a meeting at the health care facility tomorrow in regards to the plan for my MIL. I think they got the message that she can't go home and are discussing with the family other options. If there is room, she may go to the Hospice in Branford, CT. However, that is a bit of a drive for us so we may not be able to go every day. Hopefully, we can arrange so one of her family members or friends can be there each day. I can't attend as I have two meetings at work tomorrow, but my husband will be there. Apparently, medicare will pay for the hospice.

She is doing markedly better now than 3 weeks ago. But the tumors in her head are growing and larger doses of steroids are being used to keep the swelling down. She has a problem remembering what she was going to say quite often, but if you give her time to think, she can often remember what she was going to say. The cancer has also spread to her lymph nodes, kidneys, liver and spine.

This disease is so up and down. One day the patient is pretty well, the next very bad - its so stressful.

THanks again for your words. I really appreciate it. And, Laurie, best wishes to you.


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