My brother who is in his late 70's fell and broke his hip. They also found a mass in his lung. Why is it so hard to get good care? - AgingCare.com

My brother who is in his late 70's fell and broke his hip. They also found a mass in his lung. Why is it so hard to get good care?

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At the Columbus Emergency Room they also found a mass in his lung. Why is it so hard to get good care for a family member in Columbus, Indiana? My brother is blind and is also nearly completely deaf. We have struggled for the 2 1/2 weeks since then to get him good health care. In the hospital we told them on numerous occassions while in the hospital they would leave his food tray and walk away. We spoke to them about how my brother is a proud man and will not complain about anything. Several times it took them an hour for him to get pain medication after a request was made. In the emergency room while treating his broken hip they discovered he had a mass in his lung. When they went in for a biopsy they found live cancer cells in his lymph nodes on the opposite side of this lung. We had ask the doctor to please be honest with us and when he came out he spoke to us and told us that the doctors found live cancer cells and they would do further tests to give us more information. He could tell us right then that my brother Ike had at least stage 3b or 4 cancer. That they would get him an appointment for the cancer doctors. Then he was moved to the Kindred Center for help with getting him to walk again. They moved him in a wheelchair (broken hip and all over the rough roads) back to the hospital to meet with the cancer doctors with no coat and just a light blanket around his shoulders. The cancer doctors told my sister-in-law that there was nothing they could do for him that the cancer was too advanced and he was too weak and there was nothing they could do to extend his life. We accepted this and he was taken again by wheelchair back to Kindred Center....I spoke to numerous staff people and a social worker about the problems we were having getting him adequate care. My brother is a proud man and he will not complain about anything. They were taking him to physical therapy that morning and I told the staffer taking him that he could not hear unless they spoke up and closer to his ear. She maybe raised her voice maybe half an octave. I explained to them they couldn't just bring his food in and set it there that the food needed to be uncovered, opened and a eating utensil put in his hand and they needed to take his hand and show him the edge on plate so he would be able to get to his food. There is a failure to communicate with their staff. One person would uncover for him the next one set the tray down and walked off. I went to store and bought some poster board and wrote on it for them to please be patient with him he is nearly deaf and he can only distinguish light and he was blind from macro degeneration and his diabetes. I put it on his table. A social worker came in and told me I could not leave that sign that all the information was in his chart and apparently if they were inspected it would not look good. I explained the situation and she promised to speak to the staff about it. Nothing changed. The next moring he had had an appointment with his family doctor that they said it was important he keep because he would be the one determining his medications etc. My sister-in-law went with him again in a well chair on broken hip to his family doctor. The doctor examined my brother and told my sister-in-law he was sorry but the cancer was so advanced and that he needed better pain management. He said that hospice was the place he should go and immediately admitted him and had them take him by ambulance on a gurney. We are not happy about the cancer but was so relieved that he would be going to Hospice as we had heard it was a good caring facility. He is one day. This was the only day he started seeming like the person we know because his pain was finally being managed. The admitting doctor said he had maybe a week or maybe a month but Hospice was the place that could make the end of his life less painful. We were so relieved that he would get the care he deserved. This one day we had some hope. The next day a doctor came in and told my sister-in-law that they would be releasing him to go home as he only had a "small amount of cancer and they had his pain under control. After being told by the doctor who assisted in the procedure for the biopsy that he was at least a stage 3b or 4, after the cancer doctors told us their was nothing that could be done for him but make him comfortable, after his family doctor who admitted him and told my sister-in-law that he hated to tell her but Ike probably had about at the most a month to live. Then some doctor comes in and sees him in hospice said they had his pain under control and she would be releasing him this weekend to go home. My sister in law called me last night beside herself - they do not have a strong support system at home and my sister-in-law had to go back to work full time and use their retirement savings because of a major repair that the home needed. We had heard good things about Hospice and were finally relieved his last weeks of life would not be unbearable. She said she saw very little canc

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Spot on Eyerishlass!

Luralyne.....give 'em H@%%! In the kindest way possible of course. Most hospitals have a Patient Representative who will assign you someone to work through all of the issues you are encountering. It's not a "magic bullet" but after your initial consultation explaining everything you will be able to call her /him for all issues. This can be done by phone.

It's much easier to deal with 1 person rather than what feels like "the entire hospital." The Patient Rep (should!) encourage you to call with every single problem going forward so DO NOT HESITATE to call them once you have established a relationship with them for ANYTHING you need help with.

Good luck....you are a Godsend to your brother...keep the Faith.........
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I'm sorry you and your family are caught up in a system where the right hand doesn't know what the left hand is doing.

As you have learned, there are facilities that provide hospice services but hospice services can also be given at home.

Your brother sounds more like a candidate for hospice than for physical therapy. Has he mentioned what he would like? If you would like to start hospice speak with your brother's doctor, the one who prescribed hospice previously. His office can set it up. If you would prefer that your brother reside in a hospice facility let the doctor know this too.

It's good that you're very involved in your brother's care. It sounds like he has a good advocate in you. Sometimes we have a make a lot of noise on behalf of our loved ones. I'll give you an example: my dad was very sick and in the hospital. He had no dementia at this point. When I got to his room he was sitting on the side of the bed and there was a large puddle on the floor. He had peed on the floor. I looked around and saw that the urinal was hanging in the bathroom. My dad said he had called and called and called for assistance but no one came. Finally he just had to go so he did. I was flabbergasted. I called in the tech (she actually came) and railed at her about this and then I went in search of the nurse. I found her and railed at her as well. I called my brother at work, told him what had happened, and he came right over and together we tracked down the nursing supervisor and told her how unhappy we were. We didn't get satisfaction from her so we went to her superior and finally got the reaction we wanted which was shock, outrage, and a desire to fix the situation so that our dad would never have to pee on the floor, like an animal, again. They put him in a large private room that was monitored by cameras. All he had to do was express what he needed and he would get it.

My brother and I stomped around that hospital all day long looking for someone to hold accountable. We never did find out who exactly was accountable but we were able to get the situation resolved anyway. Continue to advocate for your brother and don't hesitate to make a little noise. Repeat your instructions to the physical therapist about leaning down into your brother's ear. That's not something someone, a stranger, would naturally do. Raising her voice is something someone would do. If someone told me someone was hard of hearing, or practically deaf, I would not lean down to talk in their ear. I would raise my voice instead. But continue to get this across to the therapist.

When new staff come on shift they are told about their patients, what's going on with them, what do they need, etc. Somewhere information about your brother's meals is getting lost. Someone needs to pass along the information that he needs his dinner unwrapped and placed in a certain way. Go to a nurse for this. Each nurse. Each shift. Until the message is received.

Keep doing what you're doing for your brother. He's lucky to have you.
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Can't he be readmitted to a nh to finish out rehab? And then plans made to have him remain there as a long term care patient on medicaid.

Talk to the social workers at the hospice about getting back into a rehab facility. Tell them that there is no one to take care of him at home. Hospice services, if they are needed, can be brought into a long term care facility.
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Luralayne,

Sorry to hear about your brother.

Glad you came back with the details.

I am not sure what the criteria is to remain in a Hospice Inpatient facility. I have always been under the impression that one was admitted there only when Hospice could not control the patients pain at home.

Both my Mom and Grandmother were in Nursing Homes when Hospice was brought in.

My Stepdad had Cancer. He was in the hospital when he decided to stop Chemo and go home with Hospice Care.

Hospice was able to control his pain at home. Hospice aides came into the home 3 times a week to bathe him. RN came in once a week, more if needed. Otherwise there is a designated Caregiver usually a family member that takes care of the patient.

If your brother has been completely released from Hospice you can have him evaluated by another Hospice. I have only good things to say about Hospice. I used a Not For Profit Hospice.

It is still early morning. Others be online soon to offer suggestions and advice.
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Oh my dear
I have no idea how to help you but I am sure someone will.

I would do a major complaint to the hospital and if nothing came from that contact the newspapers (let the hospital know you will be doing that too.) Write down everything, with times and dates - if you can. Also tell the doctor about the hospice discharging him. Something has definitely gone wrong there.

Stay strong.
Sending you love and hugs
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