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Hospice. My dad was just diagnosed with stage 4 non small cell adenocarcinoma that has spread.


FaithManor
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He also had an immune reaction - long word I can not spell - that involved his body reacting wildly to the cancer and attacking the healthy cells in his brain causing him to halluconate, become delusional,and was labeled altered mental status.

 

He sees another oncologist next week but given how weak he is, I do not think they will attempt any treatment.

 

My mom, currently needing my full time care because she is non weight bearing until November due to the ankle injuries from the car accident expects me to care for him as well so he does not have to go to a nursing home. I feel entirely overwhelmed. My dh is working 70 hours per week as.his project deadlines loom in November, my brother is working similar hours, his wife works full time too, and my sister lives in France and has an autoimmune disorder and is sick again. I have very few options for assistance, and since our local ps does not accept high school credits from home schoolers, I must continue educating my senior and sophomore or it will very negatively impact them.

 

How much help does hospice give in home? Can I get respite care, help with bathing, meds, any meals? I am really upset about trying to care for both of them and very concerned about handling him when he is hallucinating. If he gets wild again and hurts mom, I don't know what I will do.

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I am so sorry! I don't have direct experience with hospice care. All the people I know who have had direct experience have said the care workers were "wonderful," so I assume they will help with anything needed.

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My mother and I took care of my Grandfather in his last few months. Hospice care did come and offered as little or as much help as we wanted. That included offering respite care so that Mom and I could get a break. We chose to not accept it, but it was something the offered as a different aspect than hospice.

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We used residential hospice.  Because there is still a lot you need to do yourself.  You can get help with all the things you mentioned - I don't know about meals.  But it is help, not there all the time.  Also, you basically need a doctor to say he needs this.  There is some sort of verification process and it involves a doctor.  What you hear a lot is that they have to be terminal in the next 6 month.

 

There is a fellow at church who is so ready to "go home".  He has been on and off hospice.  It has to do with a BMI thing.  If his weight goes down too far then he is considered terminal.  But if his weight comes back up, he's not.

 

It is a hard time for you!  Get all the help you can.  If he doesn't qualify for hospice, see if someone (doctor again) will write him up for home health.  Then you will have nurses come in to help.

 

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Oh, Faith, I am so sorry.

 

In our area hospice does home visits for bathing, palliative care and some other routine tasks, as well as short term respite.  There may also be a visiting nurse association that can help as well with your mother.  I agree with Jane: you need help and you should ask for it.

 

:grouphug: Holding you, your father and the rest of your family in the light.

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Paraneoplastic Syndrome/?  It's what happened to my dad a couple years after being "cured" of lung cancer(lobectomy)  Yes, we had the same issues with dementia.  Quick onset.  It broke my heart, but I was so relieved that he was not himself and could not really understand what was going on.  He went into hospice and it was such a sense of peace after that.  Intense sadness, but peace along with the sadness.   We had a wonderful experience.  I had a newborn and they took such good care of us.  Makes me cry to even think of it and how much they cared.

 

My mom died in a hospital from lung cancer.  It was a much different experience for our family.  Not a peaceful experience.

 

I am so sorry you have to walk this road.

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Does Hospice of Michigan serve your area? They are wonderful.

I just googled them. They have an office fifty minutes from here. I hope that means they service our rural area. Of course due to his brain tumors he has irrational fears and believes they will withhold food, water, and pain meds in order to hasten his demise.

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It depends on the hospice and his insurance/ability to pay. Maybe ask the oncologist's office for a social worker reference. It's okay to say you have reached your limit. Hospice has residential units that offer specialized care. They almost always have 24/7 visiting hours.

 

I'm so sorry. :grouphug:

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Paraneoplastic Syndrome/? It's what happened to my dad a couple years after being "cured" of lung cancer(lobectomy) Yes, we had the same issues with dementia. Quick onset. It broke my heart, but I was so relieved that he was not himself and could not really understand what was going on. He went into hospice and it was such a sense of peace after that. Intense sadness, but peace along with the sadness. We had a wonderful experience. I had a newborn and they took such good care of us. Makes me cry to even think of it and how much they cared.

 

My mom died in a hospital from lung cancer. It was a much different experience for our family. Not a peaceful experience.

 

I am so sorry you have to walk this road.

Yes, paraneoplastic syndrome. Can I ask how long your dad lasted? Dad has it in several places outside his lungs and my mom thinks he still has two or three years left, but from what I am reading online, this is not true.

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I'm so sorry.

 

I've had several close family members on Hospice.  They will send someone to sit with your father to give you a break if you need it.  They may even insist that you need a break.  My uncle died a little over a year ago after about a month on Hospice.  They send a nurse every day, once a day at first and then twice later, who bathed and shaved him and taught them how to care for him.

 

My friend's mom died just before my uncle and near the end they had to go with residential hospice because they just couldn't get on top of her pain (cancer in the bile duct - feels like a severe gallbladder attack constantly).  Sit down with the hospice coordinator and find out how they can help.  I'm a big Hospice fan.

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Do not be afraid to draw your line in the sand.  I lost my father this year, but I could not and cannot be everything to my mother at this phase in my life and my children's lives even if she might like it.  Give what you can and what you're comfortable with.  It's absolutely fine to say in home care WILL not work at this time because your mother is incapacitated if the majority will fall on you.  It's already a bunch being someone's emotional support through this process without being in charge of physical care.  Talk to the social workers at the hospital.  I know someone's father who spent his last several years in a nursing home and he was poor and under insured and his one son and his family was not in any kind of position to be a physical caretaker.  There are programs for those who need it. 

 

Everyone I know who has used hospice has been very grateful and pleased.  Both in home and residential.

 

So many hugs.  I'm so sorry.  :grouphug: :grouphug: :grouphug:

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I am so sorry your family is going through this. I am a hospice nurse and there is so much hospice can do for your family. Hospices are required to offer respite and cna services. Hospice social workers can also help connect you to local services that can help too. Nurses can help manage meds and can give 24 hr care if his symptoms escalate.

 

If your father has Medicare I can answer specific questions you may have. All hospices are required to offer the same services through the Medicare Hospice benefit.

 

I edited this to add that not all hospices are created equal. Please choose carefully. The hospice I work for is a non profit with our own hospice house. In the past I have also worked for a for profit hospice and felt like I had to constantly fight to get the things I felt my patients needed.

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:grouphug:  :grouphug:  :grouphug:

 

I am so sorry.

 

We cared for dh's grandmother in our home for the last two months of her life.  Hospice helps with bathing, meds (some), nursing support, and some respite.  Hospice did not do "custodial care", meaning that we had to be present.  When she went to respite for five days, it was to a nursing home.  That was the only break I got.  We paid caregivers to stay overnight and to give me about 16 hours per week of a break to take the kids places, to go to church, etc.

 

Otherwise, I took care of her (made all meals, managed all meds, dressed her, provided constant supervision so she would not fall, coordinated all of the different caregiving people, etc.)   It was 70-80 hours a week of unpaid work.  Medicare paid for her hospice services.

 

If your parents have some financial ability to hire help, I would suggest this.  Hospice can help you with meds to keep your father safe for himself and others and to keep him comfortable.

 

Hospice was a great support to us, but the huge bulk of the care fell to me.

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He also had an immune reaction - long word I can not spell - that involved his body reacting wildly to the cancer and attacking the healthy cells in his brain causing him to halluconate, become delusional,and was labeled altered mental status.

 

He sees another oncologist next week but given how weak he is, I do not think they will attempt any treatment.

 

My mom, currently needing my full time care because she is non weight bearing until November due to the ankle injuries from the car accident expects me to care for him as well so he does not have to go to a nursing home. I feel entirely overwhelmed. My dh is working 70 hours per week as.his project deadlines loom in November, my brother is working similar hours, his wife works full time too, and my sister lives in France and has an autoimmune disorder and is sick again. I have very few options for assistance, and since our local ps does not accept high school credits from home schoolers, I must continue educating my senior and sophomore or it will very negatively impact them.

 

How much help does hospice give in home? Can I get respite care, help with bathing, meds, any meals? I am really upset about trying to care for both of them and very concerned about handling him when he is hallucinating. If he gets wild again and hurts mom, I don't know what I will do.

Faithe, I'm sorry for the stress you're under. I think your sons could take over shopping and cooking for you. It could be a home ec credit if they need to drop a class to take on this job.

 

If your dad is violent I think you'll have to look at residential hospice unless you can find a fast acting med to calm him down. Don't let anyone guilt you out for this. Your safety is paramount. If he hurts you, both of your parents will have to enter a nursing home so don't risk it.

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Do not be afraid to draw your line in the sand.  I lost my father this year, but I could not and cannot be everything to my mother at this phase in my life and my children's lives even if she might like it.  Give what you can and what you're comfortable with.  It's absolutely fine to say in home care WILL not work at this time because your mother is incapacitated if the majority will fall on you.  It's already a bunch being someone's emotional support through this process without being in charge of physical care.  Talk to the social workers at the hospital.  I know someone's father who spent his last several years in a nursing home and he was poor and under insured and his one son and his family was not in any kind of position to be a physical caretaker.  There are programs for those who need it. 

 

Everyone I know who has used hospice has been very grateful and pleased.  Both in home and residential.

 

So many hugs.  I'm so sorry.  :grouphug: :grouphug: :grouphug:

I agree with this.  Caring for dh's grandmother was so much harder than I anticipated, both emotionally and physically.  I am still recovering.  She passed away in June.

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Thank you Annie, dad has Medicare and because their business is going to go bankrupt - they were not retired when he had the sudden bout of dementia which was cancer caused and the car accident due to the hallucinations followed by passing out (he was driving) - they are going to lose everything but their home some of the possessions that are.not.considered valuable - a social worker at the hospital said she thought she could get him on medicaid. He is also an Air Force veteran who was profoundly injured while serving his country - jet fuel explosion that burned him on 40% of his body and was considered a miracle that he survived - but has been denied all benefits every time he has applied despite being honorably discharged. She is working on that aspect to see if there is something she can force the VA to do for him.

 

We do not have a prognosis for time yet so I do not know if he has more or less than six months left, but the first oncologist did not recommend treatment accept to say that possibly radiation for the brain tumors might be a valid pallitive choice.

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I am very sorry to hear that. 

 

In most areas, you can be under hospice care in several different places: at home, at an actual hospice center, at a hospital or nursing home. Please do not feel like you must care for him in the home; it is not always possible or even preferable. 

 

My sister died in a hospital under hospice care, and the amount of visiting and care that fell to the family was still overwhelming (and we had quite a few people to help). My parents had hoped to get her home, but honestly there was no way we could have cared for her there even with daily help. 

 

Hospice should be able to give you detailed information. The doctor or hospital should also be able to refer you to a social worker. 

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My mother was given the same diagnosis in August of 2014 after a spontaneous femur fracture. It was very widely spread; she had bone mets and although we did not know it at the time, brain mets.

 

She chose to forgo treatment, which at that point would mainly have been palliative anyway, though one oncologist tried to strong-arm her into chemo, etc.

 

Hospice treatment is end of life, palliative care. It was hard for one of my sisters to understand this. I guess this was pretty much the only issue we had.

 

Except for the time when the brain mets kicked in (and once she was on Decadron those symptoms -hallucinating and an inability to eat- improved greatly), she was very comfortable. All of the Hospice staff were absolutely amazing.

 

Hospice provided some care but unless the patient was actually at the facility it wasn't anything like 24/7. I was the primary caregiver. That might be different where you are but even with respite care, which we could not utilize because of her mental illness, it was literally a full time job for me for those 5 months. She wasn't ambulatory though so that made it so much more difficult.

 

I'm so very sorry.

 

Georgia

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Oh, Faith, I am so sorry to read about this. Please, please take care of yourself. Remember your oxygen mask. Residential hospice may be the best place for your father, if he qualifies. You simply can't be all things to all people and, as much as I hate to say this, your kids need you more. And, frankly, if your father's hallucinations can't be controlled and he becomes violent, the best place for him to be will be in residential hospice or skilled nursing care. You probably won't be able to care for him with the hallucinations; people with hallucinations are stronger than you can even imagine. I've seen elderly, frail women need multiple firefighters to hold them down until I could administer the needed pharmaceutical.

 

I bid you the needed wisdom, peace, and understanding to deal with this difficult situation. (((())))

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:grouphug: :grouphug: :grouphug:

 

I am so sorry.

 

We cared for dh's grandmother in our home for the last two months of her life. Hospice helps with bathing, meds (some), nursing support, and some respite. Hospice did not do "custodial care", meaning that we had to be present. When she went to respite for five days, it was to a nursing home. That was the only break I got. We paid caregivers to stay overnight and to give me about 16 hours per week of a break to take the kids places, to go to church, etc.

 

Otherwise, I took care of her (made all meals, managed all meds, dressed her, provided constant supervision so she would not fall, coordinated all of the different caregiving people, etc.) It was 70-80 hours a week of unpaid work. Medicare paid for her hospice services.

 

If your parents have some financial ability to hire help, I would suggest this. Hospice can help you with meds to keep your father safe for himself and others and to keep him comfortable.

 

Hospice was a great support to us, but the huge bulk of the care fell to me.

My parents are going bankrupt due to this. So hiring people to help is not an option since dh and I would have to pay for it, and we are paying for some classes for dd before she and her hubby welcome their first child, and we just paid part of eldest boys'college tuition. But while I was talking, a couple of friends called to ask if they could give us three hours off on Sunday. That was very nice of them, and I think I had better take them up on their generous offer.

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I would see if he qualifies for Medicaid and take advantage of any offers of help which come your way.  Only one person offered to help me.  I only realized it in retrospect.  

 

Please take care of yourself and your own family and examine realistically what you can provide.  I do understand the pull to help a parent.  I was pg with little dd while touring nursing homes for my mother.  I did not visit her as much as I wanted, and was not able to help due to the needs of my own family and children.  My mother would not want me heaped with guilt.  I'm sure your father would not, either.

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Feel free if you want to pm me about brain tumors.

 

Hospices are all set up differently and offer a variety of services. Typically there is a residential center for those needing intense care and different levels of support with home-based care.  Hospices often work with nursing homes as well in rural areas.  

 

Bathing was offered twice a week. The local pharmacy and hospice both offered to package pills by time/day needed. Respite care could happen under certain guidelines.  Meals were not an option---but Meals on Wheels or Senior Services might be a possibility for your parents.

 

To be honest, we placed two family members into nursing homes last week because it was more than our group of family members could handle. It has been hard for everyone, but that's reality.  I'd give some serious thought to doing a placement.  Our hospice here will take you regardless of ability of pay. The nursing home system will keep you even if funds run out.  Look into your options.  

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Yes, paraneoplastic syndrome. Can I ask how long your dad lasted? Dad has it in several places outside his lungs and my mom thinks he still has two or three years left, but from what I am reading online, this is not true.

 

 

In our situation, it was very fast.  It was a quick decline. 9 months from first symptoms.  He was living alone(my mom died 3 years earlier.)  He fell many times in the beginning and the doctors were trying to figure out what was wrong.  So, we went from specialist to specialist.  He was losing weight fast and he became very paranoid and pretty mean mostly to me(only child.)  He said he knew I was stealing his money and I was holding him at my house against his will.  When I showed him his bank account, he was very sorry for accusing me, but forgot that by the next day and acted very suspicious again. He confused day and night and I would hear him trying to get up at night to go to the bathroom alone.  He would just be cursing and ramming the walker into the wall repeatedly.  He would ask me to cook for him at 2 am. He had been a very sweet man.  And that's how I remember him.  I lost him months before his death.  The doctor could not tell me how long.  Doctor told me months to years.

 

 

I'm so sorry.  I hope that is not hard for you to read.  Every patient is different.

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Thank you Annie, dad has Medicare and because their business is going to go bankrupt - they were not retired when he had the sudden bout of dementia which was cancer caused and the car accident due to the hallucinations followed by passing out (he was driving) - they are going to lose everything but their home some of the possessions that are.not.considered valuable - a social worker at the hospital said she thought she could get him on medicaid. He is also an Air Force veteran who was profoundly injured while serving his country - jet fuel explosion that burned him on 40% of his body and was considered a miracle that he survived - but has been denied all benefits every time he has applied despite being honorably discharged. She is working on that aspect to see if there is something she can force the VA to do for him.

 

We do not have a prognosis for time yet so I do not know if he has more or less than six months left, but the first oncologist did not recommend treatment accept to say that possibly radiation for the brain tumors might be a valid pallitive choice.

Based on what you have said, your father would fit criteria for hospice services as long he is not receiving aggressive or curative treatment. If he lives longer than 6 months and I hope he does, hospice services would continue. Palliative radiation is an option but not all hospices will take on the cost of it.

 

Hospice social workers are amazing. They know how the system works and how to get the benefits needed. I love the social workers I work with.

 

The Medicare Hospice Benefit does not pay for 24hr/ 7day week in home care. It will pay for in home continuous care for out of control symptoms, 5 day periods of respite care (there is no limit to the amount of respite care you receive, the 5 day periods cannot be stacked on top of one another), and general inpatient care in a hospital or hospice facility for out of control symptoms.

 

Medicaid Hospice Benefit will pay for 24 hr care in a nursing home. My hospice takes care of many patients who live in nursing homes. The VA also has their own hospice program.

 

It sounds like your family is dealing with a lot. I am so sorry. My father was an Air Force Veteran too. And I felt he was let down with the care he received.

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