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Old 05-11-2018, 03:49 PM   #1
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Default Please Keep My Father in Your Prayers and or Good Thoughts

My father has been battling cancer for a while now. He had a mass in his left lung, when they removed it, the realized the cancer moved into his bones. Most specifically in his left hip at that time. They implanted a rod ad pins in his femur and hip as a preventive measure to keep the leg and hip from breaking.

He was getting chemotherapy, and was on a three week break between treatments. During this time his hip was really hurting him to put any weight on it so he been walking with a cane. He tripped and fell, which hurt that hip. He ended up being transported to an emergency room where they worked on pain management. Once they stabilized him they said he should go to a rehab / nursing home for physical therapy.

So they put him in one that was only 5 minutes from my mom's house. They at first told me and my mom they where going to help us with Medicare and such. Then they called his cancer doctor and canceled all his appointments telling the doctor that he was there recovering from a surgery. After twenty days, they call us telling us he is able to walk unassisted 150 to 300 feet and they are sending him home since Medicare will no longer cover his stay.

We tried to get them to let him stay since my mom is not in the best of health and taking care of my dad would be very stressful. They said he could stay but it would cost us $170 a day out of pocket. Then they said oh by the way, that doesn't include physical therapy. Then they raised the price to $190 a day. My mom went there and told them please let him stay. They had her sign some papers, and sent her on her way. Then I get a call from them asking to be paid a week in advance. I had enough so we brought him home. They sent him home with a catheter and a diaper, he couldn't walk at all it took 6 nurses to get him in to the car.

Now they (the nursing home) put in a call to a home service lined up called Residential Home Health. I get a call from them and they said he will start physical theory next week. I asked them isn't a nurse coming? We need help he has a folly catheter, bed sores on his back. She was shocked the only order the nursing home put in was for the physical therapy. She fired of emails, and made phone calls. All of a sudden we are seeing care nurses, physical and occupational therapist, a social worker, and a palliative care nurse. So they got us a bedside commode, a wheel chair, and a hospital bed.

Now I take my father to see the chemotherapy and when the doctor realized the nursing home had lied to him to cancel the appointments he was pissed off. He had me take my dad down to the radiation oncologist and schedule my dad for treatments on his hip to help stop the pain. For two weeks I was transporting my father from home to the treatment center. As the pain started to go away in the hip he started to complain about pain in the small of his back. By the last few days of the treatment the Chemo Oncologist wanted a new PET scan to see how the Chemo worked.

After the PET scan he noticed the previous doses of Chemo did not help at all. He said he will give my dad a week to rest up from the radiation and will start a new Chemo drug in hopes to go after the tumors in his hip, lung, ribs and the L2 of his spine. Two days prior to him restarting Chemo the nurse called to verify his appointment. He complained how bad his back hurt. She told him to go to the ER. Now at this time he was on 75MG/per hour of Fentanyl, and 30MG morphine as needed every 4 hours. This was making him loopy and hallucinate which I informed the hospital about as he arrived there.

So now the hospital is reworking his pain meds to help him get comfortable. Then they got him stabilized and wanted him to return the first nursing home. I flat out said no and asked if they could send him to the one my mom went to last year. They didn't have any beds available for him, so they social worker submitted my dads info to 5 different nursing homes. They got him admitted to one that is only 5 minutes from my house.

The first day he was there a nurse calls me and asks me if I want to make his doctor appointments or should they do it, and if I would transport him or should they arrange for transport, and if I would ride along or meet him at the doctors office. I was super pleased, told them make the appointments, arrange transport and I will meet him there. She then pointed out he had a follow up appointment with the radiation Oncologist. So we see the doctor and explained to him how the hip feels better but the back was in pain now. So he and the Chemo doctor agreed that he should start another round of radiation for the tumor in the spine.

They scheduled him for another 10 treatments and all last week I met him there when the transport brought him over and saw him get back on the transport after the treatment, and I went to work. Last Friday I get a call from the nurse that arranges transport and the administrator of the new nursing home. First I was told his Medicare will no longer cover him since his physical therapy has stopped improving. Then they told us we can apply for Medicaid to help pay for my father as a long term resident and my mom can stay in her home. So we started the paper work to get his status as Medicaid pending. Then The transport nurse talks to me that Medicare will no longer cover the transport, we can pay out of pocket or I can transport him.

So all this week I been transporting my dad to radiation treatments. I have to go to my mom's house 20 miles away, trade out my truck for her car. Then drive back to the nursing home which is right by my house so another 20 miles. I get my dad from the nursing home wheel chair to the one we had, then into the car, and travel back to the treatment center which happens to be 15 miles back towards my mom's house. Then I bring him back to the nursing home, go back to my mom's and give her the car back and get in my truck to go back to work. This all was going pretty good till yesterday.

I show up at the nursing home, and I didn't see my dad at the nurses station waiting for me. I figured since I was 10 minutes early he must still be in his room. I go to the room he is not there. A nurse informs me he is downstairs at physical therapy. So I go back to the nurses station and wait. A few minutes later my dad is being wheeled towards me and he looks exhausted. We get him in our chair and I take him to his treatment. After the treatment the Doctor wanted to do a second week check on him. Doctor asked my dad how the pain was my dad noted it was better. The whole time during the doctor interview, my dad kept nodding off, and his breathing was labored and shallow.

So I get him back to the nursing home and get him settled into his bed. I tell the nurses that he seems overly tired. We all thought maybe the physical therapy and then the treatment right after was to much activity for him. So I go on my way, making calls to schedule my jobs around his second to last treatment for today. Then I go home wiped out and hit the sack early around 7pm. My phone rings at 9:30 pm it is the nursing home telling my fathers O2 stats on room air are down to 68% and they called 911 to get him to the ER.

I get to the ER and walk in to the room my dad is in and see him with a full face mask on and his O2 numbers were up. After a bit they started to drop again. They did some x-rays and found that he has a severe case of pneumonia and fluid outside his lung. They bring in a Bi-Pap machine to see if it would help. Again at first his numbers improved, but then went back down. So now they sedated him and hook him up to a ventilator, and move I'm to the ICU. I didn't get back home till 5 am. I walked in sat down and passed out.

Then my phone rings at 8:30 it was the Chemo Oncologist, he seen my dad as he made rounds in the hospital. He feels my dad is to week for any other treatments, and keeping him alive on the ventilator is just not the best course of action. He said they can give my dad antianxiety drugs and remove the breathing tube and let him pass peacefully. The lung doctor called a little later and said my dad is responding well to the ventilator, but feels we should put a Do Not Resuscitate (DNR) order in if my fathers heart stops. That the CPR and shocking him would be very painful and break all his ribs. But he thinks we should give my dad a couple days to see if the antibiotics and steroids clear up his lungs. He then asked me a few questions about how long has been having trouble breathing, and if he was using oxygen. I told him the nursing home had him on 3liters of O2 and knew about him coughing up phlegm for a couple weeks. He named the nursing home and the town it was in to make sure we were talking about the same place. He then said he makes rounds at that nursing home and was shocked they never had him check out my dad before it became an emergency.

So now you all are up to speed on my dad... sorry for the length of the post, I just need to put all this down into words to get out of my own head.
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Old 05-11-2018, 05:02 PM   #2
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Oh mercy

I know this is hard on you and your family. I went through similar with my Mom about 4 years ago (not Cancer though) & my Step Dad about 10 years ago with Cancer.

I had a DNR for my Mom & my Step Dad had a DNR. Once things get to far one thinks about the quality of life, pain they are in and stress on the family. It is not easy to have to make that decision. You Mom has to be going nuts. With what you describe I don't think it would be a bad thing to have a DNR, keep him comfortable and if he gets better great, if not he will be kept comfortable until it is his time.

I had a lot to learn with Medicare & Medicaid. They can take everything a family has worked for. I found a couple of ways around this, but it takes 5 years of not being able to require them. If a family can last that long you can save properties & funds.

My heartfelt sympathy for you & yours. If you need or want to talk PM me, I will give you my phone number. I won't be back on the board until Monday.

Stay Strong
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Old 05-11-2018, 05:45 PM   #3
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I can only begin to sympathize a bit with you because my wife is now working on her third variety of cancer. She is doing fine but also has youth on her side.

You definitely need support where you can get it in these situations. Getting words into visual form definitely helps too.

Uplifting thoughts sent your way, buddy.

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Old 05-11-2018, 06:14 PM   #4
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My sympathies and thoughts are with you. Very tough.


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Old 05-11-2018, 06:54 PM   #5
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Iím sorry to hear what your family is going through, but Iím glad you shared. Sometimes we just got to get it out. Thoughts for your dad and entire family.

Stan
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Old 05-11-2018, 08:23 PM   #6
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Hang in there Ratz, keep the faith. I'm sorry for your dad's predicament and the tough times that you are all going through.
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Old 05-14-2018, 10:30 AM   #7
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This is a painful time for you and your family Ron. So sorry your dad is having such a tough go with it.

I am hoping for the best for you and yours sir.
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Old 05-27-2018, 09:54 PM   #8
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Sorry I have not updated sooner. My father passed away May 16th 2018. I have been busy taking care of my mom and making the funeral arrangements. So I haven't been online as much.
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Old 05-31-2018, 05:55 PM   #9
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@SewerRatz - Sorry to hear about your loss pal. At least he's free of the suffering and in a better place. I bet he's proud to have a son like you. Passing on is part of life. God bless.
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Old 06-01-2018, 01:13 PM   #10
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Prayers up for all of you.
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