My Dad

[Rhodie Ranch]

My MIL had hospice in Calif for her end stage Alzheimers and she got a bill after she passed.

 

[Carol Dee]

My MIL had hospice in Calif for her end stage Alzheimers and she got a bill after she passed.

I guess each state is different. Sad.

 

[Beekissed]

Some hospices are non-profit, some are profit....just got to choose the right one. I worked for a non-profit hospice, which meant they took whatever the insurance provided for their services but could nor would charge anything else. All medicare part B provides for end of life care, free of charge to the patient, though they will still get itemized bills to their home to show what medicare is paying...this is sometimes alarming to an elderly patient, as they think it's a bill but it's just a statement of services paid by medicare.

They would often exclaim over how much money hospice was being paid for our services and ask if that filtered down to the staff. Sadly, it didn't, but at least the patient didn't have to pay those costs out of pocket.

The hospice in the next county was a "for profit" hospice, so they wouldn't take any patients who didn't have the right insurance, would bill over and above the insurance, etc. People were often confused by these two hospices working areas in the same county, so they would not get ANY hospice in for the patient due to stories they heard about the other hospice.

Do your homework on who you choose, but I'd definitely recommend having hospice to his home...they can provide so many things that will enable him to stay in his home longer than he normally would do and they won't take the farm when it's all said and done. Many of the families in the big agricultural counties we served would keep their loved ones at home and out of the nursing home in order to keep the land in the family and out of the nursing home's grasp. It's a win/win situation when there is good family support nearby or in the home.

Our hospice even provided hospice care if the patient was in a nursing home, allowing them to get more individual care than the other patients there and better end of life care and treatment than otherwise is provided.

 

[journey11]

The swollen leg may not be a blood clot. When DH was put on the steroid his right leg swelled huge. He had to have an ultrasound on that leg twice. It stayed swollen a long time. Never did have a clot. It is his bad leg with bad circulation. He broke the femur bone when 18. He was taken off the steroid later and then he had to go back on the steroid twice over the months and his leg never swelled like that again. DH did a lot of what your dad is doing. Actually, a lot of people with cancer seem to be alike. No rest, always stressed or stressing others. My mother had to go to a nursing home almost 2 years before she died because we could not give her the care she needed. It was hard, but looking back it was the best and best for my children. I know a person over the internet that has lung cancer and refuses chemo. She is on oxygen and suffering. Her family is suffering. She basically was saying goodbye months ago, but she is still alive and her family watching all this. Just because a doctor says you are dying does not mean today or even soon. Soon to them could be a year. DH with radiation, chemo, surgery, and now immunotherapy is walking, talking, eating, driving, active. This lady is not walking, using oxygen, not being active, and not sure if she is eating. I type medical reports and the doctors told a man he was going to die. He decided he wanted nothing done and was not going home to die and put his wife through it, so wanted to stay in the hospital, take off his oxygen and have no medical treatment. They told him, oh you are not dying THAT SOON, but still he took off the oxygen, no blood pressure medicine, no diabetes medicine, so now he can live not as well as he was before and think he is dying daily, but really just suffer more. Also, years ago, I moved an elderly aunt to my house and my mother was alive and we took care of her until she died. We did her no favor. She was mad. She wanted to go to her house. If we had gone to another state and moved in her house, she would have been happy, but she died a slow death being sad, mad, and stressed out bad. I do not know if any of this will help you Journey. I know exactly how you feel about your dad. Why people who are sick, lash out at their family, makes no sense, but steroids, brain tumors, strange stuff happens. Your brother and yourself have to take care of yourselves first. I know, easier said than done.

He is so funny, from one day to the next, and he may often change his mind on things. He is going ahead with the chemo now. We've heard from several people that the pill form of chemo is not so hard on you, so he was encouraged by that. The Oncologist yesterday told him flat out that he will not make it 6 months without treatment. I do not believe he really has absorbed the full reality of all of this bad news, but in a way it is good because he is living more in the moment day to day. I think all of the fretting about details is mostly on the financial stuff and is quite a bit like OCD. My dad has always been a hardworker and a very busy person. Naturally, he doesn't know what to do with himself now that he has all of this downtime. Sometimes he seems like his old self and others I can tell that the tumor and the surgery have changed him some. I have to wonder if he will ever run out of things to worry about though. As soon as we resolve one issue, something else comes up. It is all so complicated and a lot to take in. I am handling all of the backend of the business things for him, but it is really hard to him to let go of the control he is used to having over his own affairs. If I can just get him to understand why he isn't eligible for SSI, then I will breathe a sigh of relief! That has been exhausting, to explain it over and over again. These things are tedious enough for the average person, without adding brain injury into the mix.

I explained to him that he has too many assets to qualify for the SSI. That opened the conversation about the will and what he wants to do in the here and now that may benefit him in his care. He told me that he doesn't think he needs the farm anymore and is willing to sell it to have the money. I feel so relieved to hear that. I think that is a wise choice. That money will go far.

We had 3 appts yesterday. The Oncologist went over the plan for the chemo with us and we will talk to the radiation doctor next week then the following week it is all set to go. The neurosurgeon approved him to drive again, short distances around town for now and further if he is doing well. That is a major blessing and a relief! He will be happier now that he can get out of the house when he wants to. The ladies from church are going to bring him dinner every day for the 6 weeks or so as he undergoes treatment. We will be driving him back and forth to Charleston, 40 minutes away, M-F for 6 weeks, so that is also a huge blessing. My sister and I have fed him well with home cooking and he gained 6 lbs since leaving the hospital.

His leg is doing better, no worse and not hurting, but still a tiny bit swollen. With everything going on, I forgot all about mentioning it to one of the doctors while we were there yesterday. I told Dad that I forgot and said I'd call back and tell them and he said don't you dare and to leave it alone. Three more appts next week, M, W, & F... Hopefully it was just a side-effect of the steroid, which really messed with him in a lot of ways.

 

[journey11]

Some hospices are non-profit, some are profit....just got to choose the right one. I worked for a non-profit hospice, which meant they took whatever the insurance provided for their services but could nor would charge anything else. All medicare part B provides for end of life care, free of charge to the patient, though they will still get itemized bills to their home to show what medicare is paying...this is sometimes alarming to an elderly patient, as they think it's a bill but it's just a statement of services paid by medicare.

They would often exclaim over how much money hospice was being paid for our services and ask if that filtered down to the staff. Sadly, it didn't, but at least the patient didn't have to pay those costs out of pocket.

The hospice in the next county was a "for profit" hospice, so they wouldn't take any patients who didn't have the right insurance, would bill over and above the insurance, etc. People were often confused by these two hospices working areas in the same county, so they would not get ANY hospice in for the patient due to stories they heard about the other hospice.

Do your homework on who you choose, but I'd definitely recommend having hospice to his home...they can provide so many things that will enable him to stay in his home longer than he normally would do and they won't take the farm when it's all said and done. Many of the families in the big agricultural counties we served would keep their loved ones at home and out of the nursing home in order to keep the land in the family and out of the nursing home's grasp. It's a win/win situation when there is good family support nearby or in the home.

Our hospice even provided hospice care if the patient was in a nursing home, allowing them to get more individual care than the other patients there and better end of life care and treatment than otherwise is provided.

You all have really given me a lot of valuable information. I feel better prepared now to deal with all of these things. I often see ads in the newspaper where people thanked certain hospices for all they did to help them and I often see "in lieu of flowers, please donate to certain hospice". I will have to ask around here for one that is recommended, but it sounds like there must be a non-profit in the area.

 

[Carol Dee]

Things are sounding pretty positive in a lot of ways @journey11 I am glad to hear that. I hope you will be able to find a great hospice in your area. They where such a blessing to our family. Hang I there. We are all pulling for you and sending hugs and prayers, too.

 

[Smart Red]

Journey11, it sounds as if things are getting better. A good thing! I am happy that your father is working toward the future. Great news that he can drive a bit now. Being able to drive will do a lot to keep Dad's outlook on the positive side.

 

[baymule]

Hang in there girl. This could be a long ride. Get all the paperwork in order, get the will done, it will save lots of problems later. Love your Dad every day, make him as comfortable and happy as possible and ask God for patience and strength to get you through this.

My Daddy had bone cancer and was in excruciating pain and bedridden for the last year of his life. Mom kept him at home until he had a stroke, he lived the last 23 days in a nursing home. Through it all, he was cheerful and upbeat. I would go see him, we'd laugh and cut up, then I'd cry all the way home. There is no easy way yo do this, you have to take care of yourself so you can care for him and your family.

 

[ninnymary]

I'm so happy to hear that your dad is doing better. The night before last I woke up at 1:30 and couldn't go back to sleep so I prayed for you. I do believe God is answering prayers.

Mary

 

[journey11]

@baymule , I bet you get your awesome sense of humor from your dad. Keeping a good attitude and a sense of humor go a long way through things like this.

@ninnymary , thank you for praying, I can feel it. God gives me an extra dose of peace and grace when I need it most and has given us such wonderful friends and so much support.

Thank you all for your encouragement and wisdom! I feel like I am in a whole other world at times, but I know we're gonna get through this. I keep telling my dad all his needs are met and everything will be alright. Sometimes I need to hear that myself!