Dad is going downhill, so his Dr. referred at home hospice care. Is she trying to tell us something?

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Dad is going downhill, so his Dr. referred at home hospice care. Is she trying to tell us something?

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My Dad has been going downhill.. every time I go home to see him, he has lost more weight and can't seem to keep up with what's going on around him. Then he sleeps most of the day.
My mother just had a pacemaker put in, so her days of being caregiver have gone, because she can't do a lot right now. So she asked my Dad's Dr. About a program to get a caregiver in the house to give my dad a bath and help get him in his chair and back in bed. (My dad is completely disabled)
The Dr. actually suggested at home hospice care. Is she trying to tell my family something? I have had plenty of people tell me that hospice doesn't always mean the end... but I have had people tell me the opposite. I know my daddy is declining rapidly and I want him to have the absolute best care... I just wish the doctor would tell us what is really on her mind... What do you think?

Dad End of Life Hospice

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I was told the doctor gives out a diagnostic, say terminal brain tumor, hospice will assist you for your comfort related to the brain tumor- may that be pain killers, or other medications to comfort you. If you happen to break your hand while in hospice then you can still visit the hospital to get that treated. In your dad's case he will have assistance and medications to comfort him but not make him better.

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Be aware that, when you agree to hospice, you also agree that your LO will not go to the hospital. You will sign papers to this effect and also that, if you DO take your LO to the hospital, Medicare will not be responsible.

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As others have said, hospice can last more than 6 months. My wife is on hospice, has been for most of a year and probably will be for several years or more. She has a terminal condition (PSP) but unless something else pops up, she will not die of this for a while yet. She is disabled to the point of being unable walk or move much and has recently started showing signs of dementia. Hospice care has been a blessing to us and is one of the most useful things our years of contributions to SS has given us. Please feel at ease in using this service, the end does not have to be 6 months away.

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What the doctor is telling you, is that there isn't very much that he can do to help your father. That he is at the end of the rope. Probably no other doctor will have anything to offer him either. Nobody can tell how long he is going to live, but it seems clear that there is nothing that could stop his progressive down hill path.

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Keep in mind Hospice does not provide 24 hour help or even every day help.

If your mom is not able to care for your dad it may be time (unfortunately) to look at other options.

Start preparing and looking now. This can be a difficult and lengthy process and Covid is not helping these situations.

Good luck to you and your mom.

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I thought the same thing when my mom's doctor suggested Hospice. So when I called Hospice, I asked them if this means the end is near. I was told no, that they have had patients for quite a while. If the patient is still living after 6 months they renew the contract.
I have an RN that comes in once a week and checks mom and another helper that comes twice a week to bathe mom. They have provided SO MUCH at no cost.

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If course, the hospice gave you a "politically" correct answer. Actually, hospice means, the end of the rope. That is that there is nothing more that the doctors can offer to save the patient.

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Depending on the country or state/province you live in, the definition of "hospice" may have different meanings. Generally, the idea is to provide care that makes a person comfortable and not worry about "curing" or restoring a person to a higher level of functioning. Some states/provinces/countries require that a person be considered "terminal" in 6 months or less. Since this is your real question, I suggest you ask the doctor,

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Ballen1012: Imho, perhaps you should ask his physician what her implication was.

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If you wonder about your father’s condition, use the portal (if you have access) and ask the doctor to write or call you. If he is losing weight (medical people call it failure to thrive), he could be in the last stages of life. Hospice typically lasts six months, but can be renewed. They send out a caregiver a few days a week that can give a bath and change the bed, etc. If they aren’t able to care for one another, they might consider skilled nursing facility. They can have hospice there, and they can be together. Best of luck with it.

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IN February this year I went thru same thing with my mom. Hospice is there for the dying but they're also help with palletive care which is comfort. So don't be upset. Everything is alright just means your dad isn't getting any better but he's not dying yet either. Good luck and god bless.

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Why don’t you ask her? She may just have signed you up for palliative care. That doesn’t mean end of life necessarily but just support to make the patient comfortable. I wouldn’t turn it down since it sounds like your mom needs the help to cope. I would be asking his doctor if she thinks he hasn’t got much time left anyway just for your own peace of mind. Hopefully your dad has signed a release so you can speak to her. If not I’d get that in place before much more time passes for both your mom and dad.

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Many responses have missed what you said. “Your mom asked for a program to get your dad bathed and in his chair, then back in his chair at night. This is not what Hospice does. They will generally from my experience twice with hospice, come up to 3 times a week for a bath. They will help after the bath to get your dad in the chair afterwards. They will not come back at night to put your dad to bed. Your mom would need to get volunteers for that or pay someone to get dad in bed at night and out of bed in the mornings hospice does not come. As far as medicine-hospice only gives you for free medicine they approve. Example they do not do Synthroid but will do the generic, they will not give you Eliquis but will allow another blood thinner. If its something they do not cover then tend to say you no longer need it. My mom was fortunate to have BCBS in addition to Medicare so we were able to keep giving her all her medicines and only used Hospice for the ones they covered. A hoyer lift is easy to use once you know how. But your mom may not be physically able to use it with her health. My mom went on hospice Dec 24th 2019 and passed Aug 6th of 2020. She lived 8 months on hospice with out my paid helpers to give me some time off and keeping mom on all her current prescriptions probably attributed to mom living on hospice as long as she did. My mom was not in pain so we never administered any morphine. Sending prayers for you and your mom.

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Ask. Ask the doctor specific questions. Then get a second opinion.

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I chose to place my 65 year old brother in hospice after he was found to have a very large glioblastoma which has quite a poor life expectancy, and I knew he would not tolerate radiation and chemo since the reasoning and decision making parts of his brain had deteriorated so much. My goal has always been to keep him safe and happy, or at least comfortable. Given our circumstances (I live 1500 miles away and his 23 year old daughter isn’t able to take care of him.) he’s been an excellent nursing facility since June—prior to that it was nursing homes from hell. He’s coming up on six months in hospice. He actually improved when he went into hospice. He gets lots of attention and sees the same people all the time which really helps decrease his confusion. BTW, hospice patients in a nursing facility have an extra set of eyes on them so the care can be better.

He loved playing rock guitar and knowing that the hospice brought over a musician to play acoustic classic rock music for him. After that day my niece always brought my brother’s guitar so he could play along. He had been pretty silent up until then. He opened up and began talking, smiling and laughing—music really helped his brain work better, made him happy and more cooperative. He refused to take a shower until the hospice nurse played Aerosmith on her phone and she asked him if he thought Steven Tyler was still making his moves. My brother laughed and and agreed to the shower. Hospice even took him and his daughter to the pizza pub for the visiting guitarist’s gig—they sent me pictures. The care they’ve shown him has been amazing and a godsend for my niece and me, knowing they really care for him. They’ve kept in touch with me often and always listen to our concerns.

The purpose of hospice is to make the most of a person’s remaining days. But most people only associate it with the last few days. That’s because so many people are brought to hospice at the very end of life; many doctors are reluctant to refer a patient to hospice and families don’t want to face the end. Making the decision to place my brother in hospice was one of the hardest decisions I’ve ever had to make—realizing we were letting him go and nature would take its course. But it was one of the very best decisions I’ve made. I read the book Being Mortal by Atul Gawande and that was incredibly helpful. Take care.

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My mom's Doctor recommended Hospice care for my mom. She had her defibrillator turned off, has congestive heart failure and COPD. We had her evaluated. She was turned down. She moves from her chair to her bed, and can get herself water, or microwave something. I have been taking care of my mother full time now for 3 and 1/2 years. I have watched her weaken over that period of time, and when the house has been quiet for a long time, I worry that I will go upstairs and find that she has went with the Lord. If your father is able to get hospice care, it would be a blessing for you, and your family. It doesn't mean that he is going to pass in the next 6 months, but it does mean that your father might be able to receive help that will ease the burdens, and Medicare will pay for it. Prayers for your father, you, and the rest of your family. God bless.

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There is no need to be afraid of Hospice Care. W used it for 15 months during my wife's decline (dementia). She had excellent nursing care with frequent visits, twice weekly baths, a Hoyer lift for bed to chair to bed transfers, respite caregivers for times when I couldn't be there, physician supervision of her care and condition. These are things that are not usually within the reach of a family, but improve the quality of life of the patient and relieve the anxiety of the family.

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There are lots of good answers/info in these responses for you to digest. What would you want for yourself if your health was in serious decline? I can tell you that I would choose hospice. I learned when we were referred to hospice for my Mom that she received the most tender care, that the nurse practitioners, nurses, and home health aides were supremely dedicated to doing whatever was helpful for my Mom, and to help us on this journey as well. They were absolutely amazing. This does not mean you will lose your Dad today, tomorrow, or even in 6 months. But, as others have said, the doctor should provide whatever clarity he/she can. For whatever it's worth, I highly recommend the book Being Mortal - Medicine and What Matters in the End by Atul Gawande. It really speaks to the idea of medical care for the sake of the patient, versus the drive to do everything possible to prolong life. Personally, I can appreciate that quality of life is paramount. Sending best wishes for you to be able to navigate this situation with a clear mind and a full heart.

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I agree with your recommendation of the Being Mortal book. I am on my third reading and I get something from it every time. I’ve also been fortunate to have a cardiologist for my mom who approaches medicine similarly to Dr Gawande. We’re evaluating her for hospice this week, as to continue aggressive care for her would just be cruel at this point. She is 94 and has CHF, kidney failure, possible cancer, and vascular dementia. I sincerely hope she is approved for hospice, sad as that is. It’s much more appropriate at this point than rushing to wait 6-12 hours in the ER every time she falls, only to be told there is nothing they can do.

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From some of the comments I'm reading, I can only assume that many people leaving them have never actually been involved with hospice and are simply repeating things they have heard.
Hospice nurses are angels, in my opinion, and they can make all the difference between a peaceful passing and one that is fraught with uncertainty and guilt for the family, and pain and fear on the part of the patient. Trust the doctor and nurses when they recommend hospice—they have seen many people near the end of life and recognize the signs.
Interview several hospice companies, because once you make a decision, you will be working hand in hand with them to care for your dad. Don't expect that nurses will be by the bedside all the time (especially during this time of Covid), but they do make regular visits and are only a phone call away for advice. Because hospice is covered by Medicare, all prescribed medicines will henceforth be free of cost. Needed equipment such as wheelchairs, rolling tables, and sometimes hospital beds will be covered. Regular nursing visits and help with showering and other routine care from aides will also be covered. Most companies offer the services of a chaplain who works with the family and patient to help them adjust to new realities.
The biggest benefit, in my opinion, is the kind and practical advice that you will receive from the nurses—just knowing that they will share the load helps. They are the bridges to hospice doctors who will prescribe pain-relief medicine, appetite stimulators, medicines for depression and anxiety, and other things to make life more comfortable for your loved one. And when the time comes and your loved one passes, they come to your home and handle the many immediate details required.
It is entirely possible that both of your parents are overwhelmed and in denial, so it would be a loving act for you to involve hospice.

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Does your mother want to have him at home, if he is in hospice? If so, you are correct that she will need to get aides to help. You (or your mother may have to do it if you are not entitled to speak on his behalf about medical matters) can ask the doctor outright about your father's health and prognosis. When a doctor refers someone for hospice, it officially means that they are not expected to get better and are expected to live 6 months or less. But as my mother's doctor told me, "nobody knows when someone will die." My mother has been in hospice for close to 2 years and had to be re-certified for hospice every 6 months. Hospice care is comfort care. In hospice, there is no attempt to fix anything (your father's living will can indicate what constitutes a medical emergency), but instead, the focus is on making the person comfortable. If you father doesn't have a living will, hopefully your mother knows his wishes. If he is in good mental shape, you and she can discuss this with him. Being in hospice (at home or in a facility) gives your father many benefits. Hospice will advise on what to do to make him more comfortable. Medicare will pay for people to come in and help, but you may need to supplement what they provide, and also for equipment and supplies to make him more comfortable. My mother has a hospital bed that lifts up, a geri chair, which is a comfortable, safe chair to recline in during the day, a wheel chair, and supplies. Also make sure that your mother has people to help her with cleaning, shopping, cooking, etc. Hospice also advised my mother's memory care residence that my mother needed oxygen and are supplying oxygen. Think of Hospice as experts who you can work with to make things more comfortable for your father.

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Communication is key. Ask the doctor. Only reason I am suggesting this is because this just happened to me.
My mother’s health has been declining. She was hospitalized twice within one month. When a home healthcare nurse recommended hospice, it jolted me and my thoughts became- scared and sad. But I asked, why? She explained palliative care was need to manage pain and assist with her needs by providing various services. She described it as a bridge from home health care to hospice. When her health declines, palliative care will transition to hospice. Of course, each situation is different and this may not be the case for your dad. But stop wondering, worrying and ask the doctor. Whatever he says, hospice is wonderful and provides care, supplies and lots of support.

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Your doctor is trying to help - with hospice care in your home, you will get many services. A part time in home aide, a weekly nurse visit, social worker, even a visit from a clergyman. It provides care items such as walker, diapers, oxygen, hospital bed, etc. You CAN choose to retain your own doctor, and I would advise that you do when you sign up. You can always change your mind later. If your Dad needs emergency care and needs to get to hospital, it is your right to send him there but he will go off hospice during that time. Hospice can be re-started upon his return home. The criterion to meet hospice is that the patient can die within 6 months, and the patient is assessed every 3 months - at which time the hospice care can be extended or denied. There is nothing to lose by putting your dad in hospice care at home - it will give your Mom the help she needs and your Dad will be cared for in his own home. Just do the research on which hospice care company will be the best fit for you. Ask questions, make sure you have POA, and stay involved to advocate your Dad's needs. Patients can be off and on hospice care for years - so don't focus on the hospice word - rather on the services it provides.

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my friend was with Hospice three times. She came home. Lived another seven years before she passed. Let the family decide when it is time to say good by to your dad.

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One needs to face the facts. Medical care is not magic, miracles don't exist. Once all available medical treatment have been tried, there is no more to be done. Instead of sending patients back home to die, we have now hospices where the goal is to make the dying patient more comfortable. The human body is designed to die after reaching its expiration date. It's a harsh reality.

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Most hospice care takes place in the home, not an official hospice facility. Most people who are in those facilities have no one to help them at home or else have homes not suitable for their care. Hospice workers will also take care of people already living in nursing homes.

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Tell the Dr instead of putting Dad on Hospice that you would like him to be on Home Health.

Hospice Care is end of life and it's really giving up Dr's appointmentso, Hospital Stays, Ect once on Hospice, you are made to be kept comfortable by the use of pain pills, etc.

Home Health is much better because it gives you the option to continue with treatments whenever needed.

With Home Health you also will get Aids 3 times a week to clean you up and you'll get a Nurse come by once a week to check your vitals and a Nurse Practioner come once a month.

You can also have therapy done if they think it will help.

The main difference between Hospice and Home Health is you intend to keep doing things to help you live longer. Once on Hospice, you've decided whatever happens happens and you won't be running to the Hospital, you'll just get meds at home to keep you out of pain.

Of course with Hospice, you will get a Hospital Bed, Potty Chair. Walker, diapers things free to use where on Home Health, you have to furnish everything yourself.

I would choose Home Health.

Onice the situation Getz worse, you can always switch to Hospice when you really plan to let things take it's course.

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In Mass, the provider must certify that pt is expected to live less than 1 yr to qualify for hospice. Speak to the MD.

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Why is your Doctor not giving you all the facts? With due respect, something is missing. I've not heard of a doctor who would leave you in the dark and not answer your question. Yes, I've heard of people in hospice care for years, years. But it also usually means that some level of care will not be available to your Dad. My response is I don't understand why your Doctor isn't clarifying this. It could be that she simply feels that no treatment is going to be beneficial, she has done all she can do. Is this doctor the PC? The family's GP? Before hospice, speak to the doctor and tell her you need clarity to make the hospice decision. Failing that, request a referral to a specialist. I will say that sleeping most of the day does indicate a possibility of end of life scenario but not its certainty. Again, I've just never heard of a family doctor who is intentionally keeping family confused on such an important decision.

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No matter the reason you should probably prepare yourself. Here when a Dr refers you to hospice the criteria is less than 6 months to live. But the Dr might be trying to be be helpful and a work around so your mother can have help, either way with sleeping all day situation that is a symptom I saw in later years of life, closer to the end. Good luck 💜

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Accepting hospice means abandoning any medical treatment or rehabilitation meant to be curative or something to prolong life such as tube feeding or intubation. The focus is on keeping the patient as comfortable as possible. So something like a UTI will be addressed, but he would not receive surgery to correct a heart valve. He will also be given pain medication with no concern about him becoming addicted to it.

Usually an aide is sent around three times a week to provide bathing, and a nurse will come maybe once a week to monitor, but you will not get around the clock care as it seems he needs. You would have to provide that with private pay aides unless you have long term care insurance or want to put him into a facility.

You can call the hospice company and ask to speak with the nurse who did his evaluation to be brought up to speed.

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Hospice is not always end of life care, however, they are all about making their client comfortable, not prolonging life. If that is what your family agrees is "the plan" then find a Hospice provider. My experience with Hospice has been mostly positive, but like everyone else in our area, they struggled with employee shortages from the beginning. The CNAs have been great for helping with Mom's personal needs. The RNs have been great with all other monitoring and care. The social workers even came in and decorated the Christmas tree! They helped us get hospital equipment needed to enable me to help her better myself. Prescriptions are ordered and filled with no charge to Mom. If necessary, I can run short errands or jump in the shower while they visit with Mom. They have a pastor, but Mom has agreed to have him visit so I haven't yet. The only drawback is they do NOT offer sitter service, which is $24-$28 per hour with a 4-hour minimum in our area. Respite care on Mom's insurance is provided at their facility for 5 consecutive days per month, but I have not taken advantage of this. Our experience has been very positive.

I know that my mother does not want her life prolonged. She has told me numerous times over the years. She has signed a DNR form. Hospice was the right choice for us. Evaluate carefully before moving forward. Make the logical decision for your family based on what you know. Try not to think with your heart. It makes difficult decisions even more difficult.

Praying for you and your family. These decisions are not easy for anyone.

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Do you think that your Dad has health issues that need major medical intervention and treatment, and that the treatment is likely to be successful in turning things around for him? If you do think this, then hospice is not appropriate for him.

If you don’t think this, then there is everything to gain and nothing to lose by involving hospice. He and your mother will get more help, he will have excellent care to minimise pain and discomfort, and he will not die any sooner. It may be less than 6 months, it may be much more. Only the medical issues kill. Hospice helps, it doesn’t kill.

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Dad is going downhill, so his Dr. referred at home hospice care. Is she trying to tell us something?

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