Ballen1012 Asked December 2021
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 many health issues at 83 and I want what is best for him, no matter how bad the truth hurts me. I was just curious if anyone relates to my confusion.
Its never easy to lose a parent, let alone at 26 years old. Watching my Dad decline has absolutely tore me apart.
Keep in mind that your mom might not be the best person to handle Dad's medical decisions if she's in such denial. Is it possible for you to at least be put on as a secondary POA for Dad? Is he competent to do that?
Take advantage of the counseling and social worker available through hospice to help you and your mom. Hospice is not just for the patient -- they're there for the family, too. If the hospice company doesn't feel you and your mom are also important, consider getting another company. I had to do that when my dad was on hospice. Their social worker said, "This isn't about you" when I asked what kind of support they offer the family. 😠 They were fired the next day. (Not only for that reason, though.) The new company made all the arrangements to switch everything over from the first company, and we didn't have to do anything except put Dad in bed in another room for 45 minutes while they switched out his medical equipment (hospital bed mainly).
Good luck, and keep asking all the questions you want.
Dad is "dying," but he may not be dying tomorrow. He's declining, and bringing hospice aboard changes the focus from fixing the unfixable to making his quality of life better. If he takes medicines that no longer work, they'll probably take him off them or reduce them. (That's with everyone in agreement -- not an automatic thing.)
My mother was on hospice for almost eight months, and nothing changed in her general treatment until we began to withdraw medications that were no longer working about three weeks before she died. Otherwise, the reason I put her on hospice was mainly because I was not going to subject her to the trauma of any more hospital stays.She was treated in place as much as was possible, and it worked very well.
It is not easy to comprehend that your spouse, the person that you have spent most of your life with, raised a family is going to die.
I had Hospice and I had the support from them. I also fully understood what the prognosis was and I spent 12 years watching the Love of my Life slowly decline. I, in my mind was prepared. NOTHING prepared me for the day he died.
I have said that you are ruled by 2 major organs. Your Head and your Heart. You have to trust that when the time comes that the Head is the one that makes the important decisions.
Nonetheless, a straightforward question along the lines of "Is my father approaching (or near) end of life?" would be appropriate, assuming you're prepared for an honest answer. For by asking you signal to the physician that you want to know and will be able to handle the answer.
It's true that many hospice patients live longer than estimated (although some of this is probably for-profit hospice organizations signing up patients who may not meet Medicare's eligibility-for-hospice guidelines. In any case, before signing up with the first hospice to offer services try to do some research to see which of those available might provide the best service.
You might also do some work to understand what hospice will and will not do. For the reality is, hospice will provide at best a few (less than daily) visits, and these will generally be less than an hour each. And as a hospice patient declines, someone (not hospice) almost always will have to assume the burden of providing daily care and companionship.
In any case, the first step is to ask for a reasonably complete and honest medical assessment. Doctors tend to be hesitant in offering this as not everyone is necessarily ready to hear the full story.
I love my mother so much, it just makes me sad that she suffers with such denial. She has moments where she breaks down crying about his condition, then she bounces right back... Telling me he is fine.
I have held conversation with her about this, and it just makes her upset. I just don't want reality to slam in to her all at once.
Her words were... "They didn't put him on this program, because he is dying." "It's a different kind of Hospice care?"
I didn't know hospice had different programs?
They brought him all kinds of equipment today... a nurse came and checked him over...
I will speak with the hospice coordinator myself, but I had no clue "Hospice" had different programs? Not sure if my mother is understanding everything or just not wanting to understand everything.
Hospice does not mean he is going to die right now or very soon. As I mentioned my Husband was on Hospice for 3 years.
The great thing about Hospice is..if your mom decides, or actually if dad decides if he is cognizant that he no longer wants Hospice service he can withdraw and return to his other doctors. Later if they decide that it is time for Hospice they can be called and will evaluate him again for service.
Diseases that do occur such as urinary tract infection or chest infection can be treated in hospice, and will be if that is the pt/family choice - but an infection that keeps coming back after oral antibiotics is allowed to progress. If patient can no longer swallow oral medications, the meds are discontinued - not replaced by injections or IV doses.
Hospices do not hasten death...and they know a lot about meds and other interventions to relieve distress/promote comfort. Conversations about medications start at admission, to try to dispel the idea that "hospice gives patients morphine to make them die."
Talk more with the doctor...and talk to a couple of local hospice agencies. The ones that are willing to come see you and your folks and listen to concerns and provide information are much better than the ones that come out with the enrollment forms all filled in for you to sign!
Ask about staff continuity and after hours coverage...a different nurse every two weeks is not good care. An answering service that calls back in a few hours is not good care. (hospice nurse suggestions)
What Hospice can mean is that given the “normal” course an illness takes, with no intervention a person’s life expectancy is 6 months or fewer.
It also means that a person has reached a point where further treatment will not cure or improve their life. If a person wishes to pursue treatment then Hospice would not be recommended but Palliative care could be.
I think your dad’s doctor has done you and the family a great disservice in not fully explaining the prognosis and the reason or reasons she has recommended Hospice.
With Hospice though your dad will get supplies he needs to be safely cared for at home. Your mom will get support as well. A Nurse will come at least 1 time a week to check him, a CNA will come at least 2 times a week to shower/ bathe him and order supplies. They can also take advantage of other services.
I can honestly say I would not have been able to care for my Husband the way I did if it had not been for Hospice and that Angels that work there.
It sounds like you need to be more assertive to acquire the information you need vs waiting or wondering what is going on.
[It is my understanding] In California, a person on Hospice for six months is re-evaluated to determine if they continue to qualify for Hospice.
* Hospice will not give medication to 'keep someone alive' so you need to be very clear on what will be provided by Hospice and what care your Dad's medical provider will provide, if any care.
* Hospice wants to keep a person 'comfortable' -
Get everything in writing and have at least two people from your family talk to the MD together and to Hospice administrator.
Gena / Touch Matters
My Mom was dying for 3 weeks or 6 months or 10 years, depending on the symptoms, the definitions, and the optimism of the person considering. She lasted longer than anyone predicted and actually enjoyed her failing years more than one might expect. If your Dad qualifies for hospice, go for it. We found the hospice people to be very helpful. The other helpful thing might be to not even try to guess how much time your Dad has.
He could die tomorrow, he could live another couple of years. It depends on what it going on in his body and how strong he is. That strength is not just physical. Mom was unable to lift more than a couple of pounds in her last years (she died at 96), but her ability to withstand disease and disability was astounding. As we all said in her final years, she was "a tough old bird." On the other hand, my Dad, who was strong as an ox died in an instant when he was 62. He was walking across the lawn and simply fell over dead. Try to take some pleasure in remembering good times, looking at photo albums with your Dad, and taking it a day at a time. Do whatever you can to make the journey easier for you both. Hospice sounds like a really good thing for now.
But if he's obviously going downhill and losing weight rapidly, sleeping most of the day, then he's likely approaching the end of his life. When there's nothing medically more that can be done for an elder, that's when hospice services are called in to help.
My mother had a friend who lived for 3 years on hospice. But normally, hospice services are called in when the elder is thought to have 6 months or less to live. The person must QUALIFY for hospice also, otherwise Medicare won't pay for it.
People here are making ridiculous/unfounded statements about your dad's doctor 'trying to subtly drop him from her care. Happens all the time.' When a doctor drops a patient, they lose that income generated by the patient as well, which makes NO sense. If this doctor has treated your dad for quite some time, why would you not trust her to have his best interest in mind and simply 'drop him' b/c she wants to get rid of him? That's the ridiculous statement here, imo. The medical people who have cared for both of my parents over the years have truly CARED for them and when it was time to recommend hospice care, they did so with compassion and with good reason. It was because my parents were sick and dying.
In my experience, when an elder is approaching end of life, the last thing that's good for them is to keep going back & forth to the hospital to be poked and prodded and tested with loud MRI machines and needles etc. They should be left in peace & comfort to enjoy their remaining time on Earth. That's the beauty of hospice. My mother was accepted into hospice care yesterday and already they brought her a better wheelchair to try to prevent her many falls. Already they've taken her off of the many vitamins & supplements she's been given daily b/c the nurse feels they're contributing to her chronic nausea. And, at 95, what good is vitamins and supplements ANYWAY?
Wishing you the best of luck getting the answers you seek and understanding what's happening with dad. Peace and prayers sent your way.
Now that being said, the patient still has to qualify for hospice care, as hospice does have guidelines that they must follow.
My husband was under in home hospice care for the last 22 months of his life, so you can see many people outlive the 6 month timeline.
The purpose of hospice now will be to just keep your dad comfortable in his final days here on earth, however long that will be. And remember only God knows the day and time that He will call your dad home, so just enjoy whatever time you may have left with him and leave nothing left unsaid.
Blessings to you and your family.
*telling "her" mother.
You need to speak with the doctor and with the hospice team about your own particular case and I wish you good luck. Hopefully there is a POA taking over from Mom now who will need all the help she can get.
This is my understanding.
This is really important to know. Otherwise, we will both confuse people here.
They 'see' things we don't and have far more experience with EOL behavior.
Yes, sit down with Dr and ask whatever ?? you may have. Hospice can be a beautiful, peaceful and HUMANE thing to do.
I have not had the opportunity to speak with this doctor personally. My mother has, and the way my mother is informing me of the doctor's decision for hospice, dosen't sound normal. According to my mother, She is making it sound like an aid is just coming in to help her give him a bath and move him from point A to Point B for her and that's not all that hospice is. Either the doctor is not telling my mother everything or my mother just isn't comprehending this. My mother honestly dosen't want to hear anything other than that, so she won't ask those tough questions. So I know I'm going to have to.
I strongly recommend a frank talk with the doctor. Unless you have medical POA--I don't believe you do--you may have to take your father and mother to the doc's often and ask tough questions. It's possible your doctor can do this via the internet and video chatting. Hospice has to be prescribed. Ask those tough questions.
It's true hospice isn't the end. Hospice is geared for those who are likely to die within six months but some do continue on or even are released from hospice because they're doing so well.
I'm sorry you and your beloved parents are going through this.
On a side note, to help you help them, encourage them to have their end-of-life affairs in order (will, living trusts, POAs, et al). I hope you all feel comfortable for them to transfer the authority for you to act on their behalf--if you're willing to accept it.
I guess I will have to get more stern with them. They are communicating to my mother and my mother has anxiety about Hospice because all of her life. That has always ment "The end".
I'm afraid the doctor may be sugar coating everything on my mother's behalf.