Made difficult decision to begin hospice, key reason was three life threatening illnesses, advanced prostate cancer, MDS (form of bone marrow cancer) and Sarcoidosis affecting my lungs now functioning at less than 30% capacity.
Ironic prostate cancer is well contained after three years and eight months, original PSA 147 with extensive bone mets, last PSA was 0.34 using only hormone shots and bicalutamide. In my situation have started hospice for the Sarcoidosis, lung impairment, but am able to continue my cancer treatments outside of hospice using Medicare and my supplement. Key advantage is if the breathing difficulty somehow stabilizes, I didn’t want to look back and wished had continued cancer treatments.
Appreciate everyone on the site, I learned a lot, received encouragement, and been provided with new insights. I place my faith in the good Lord and understand I’ve always been in His hands. Thank you, cancer warriors all.
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Bigpike
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I have mixed feelings about hospice. I prefer "palliative care" in most cases. The problem with hospice is that they usually won't let you use hormone therapy, chemo, or radiation, which provide a lot of pain palliation. On the other hand, enough opiates will get rid of almost all the pain.
I would not have entered hospice except I can continue cancer treatments. Forgot to post have herniated disc causing more pain. So far the morphine makes big difference.
Amen to palliative care. It was a blessing and hospice did virtually nothing for us except stop me from alleviating my husbands struggle for breath the last 12 hours of his life. For pain: methadone, fentanyl, morphine. What I hated was the realization is that it isn’t always enough. I was such a proponent of dying at home but I wish my husband had been in the hospital on an IV at the end...
I hear you....pain and dying are always related but pain is no reason to die.Hospice is a parking spot at a funeral home. Whatever happened to:Where theres Life theres Hope. Are we the Hopeless Generation or the Medically Stupid generation.Each saved Life helps to save another...isnt that the way it goes?my mother in law die that way. IT WAS AWFUL.IT was UNDIGNIFIED AND UNAMERICAN.
It all is terrible but to witness Death is awful for any loved one. People we dont know its still awful and not a thing you should witness.However no loved one should not be remitted to strangers. The dying know you are there and it comforts then to know. Hospice doesnt give a care. They will not cry with you. To them death is no stranger. its a procedure.
When my time comes I definitely going to choose hospice and hope family will be there as less as possible. This will be the beginning of my "goodbye".Don't want my dear ones to see me dying a bit each day. Want them to go on with their life as much as possible and ASAP
Absolutely agree. It can get nasty towards the end and I don't want to put my wife through that . Also, I don't want her to walk into THE room in our house and know that is where I died. I belong to an organisation called Dignity in Dying which supports an assisted death when there is no hope left. I would like to die a controlled, peaceful death, with my wife holding my hand, no pain and with a smile on my face. As far as end of life care is concerned, we treat our animals better than we treat ourselves.
That’s surprising and informative as we all try and map out our future and how it ends. We all hear how much better dying at home is and yet you as an incredibly caring wife wish joe had been in a hospital. If it’s not too painful I hope you wouldn’t mind a few questions that may help guide a lot of us. Is the reason you now wish he’d been in a hospital because you think they could have provided better end of life care pain and comfort wise? And you say palliative care was a blessing. So you regret deciding to leave palliative care for hospice? Again feel free not to answer at this time if to painful. And thank you for continuing on this site to try and help others. Joe would be very proud I’m sure!
Absolutely. My experiences in the past with multiple family members have been truly beautiful and peaceful and painless. What I learned with my husband unfortunately is that at times, and this is absolutely rare, the level of pain is such that it simply cannot be managed at home. The other issue we encountered was “terminal delirium” ...essentially he became confused and agitated to a level that no amount of lorazepam could contain...and so it was constantly him waking up, asking for his shoes, attempting to leave the house. Becoming furious when he couldn’t go to Starbucks at 3am. Yelling at the kids and I. Such excruciating pain that just the act of turning him made him scream- and that is with incredibly high doses of morphine, fentanyl, hydromorphone, etc. it just wasn’t enough orally and he needed an IV. He needed constant nursing care and not just the last 24 hours. My husband was the most kind, patient, loving father I know and everyone in our house at that time has trauma due to the nature of his death. I wouldn’t wish it on my worst enemy. Hospice can be a beautiful thing but hospice (especially at home) just isn’t appropriate in every situation. I apologize for the blunt nature of my response but my job is literally working with families of dying children in a level 1 pediatric trauma center and my husbands death was the worst I have ever witnessed. Knowledge is power so I hope this is helpful to someone despite the frightening and nature of the information.
So sorry for the trauma and pain of his death on all of you. It is eye opening for me (not there yet but life is so precious and yet short). I’ve thought I would go out in hospice so my wife wouldn’t have to carry the whole burden. I have a friend who is a nurse at our town’s hospice. She is an angel and has promised to see me off in her care. I live in Oregon so can arrange to have the brew for release when this body is done. Nice to have that option for “Death with Dignity”. Just knowing you have it and choosing no to take it, not today, gives a measure of added peace I’m told.
Bless you for work in pediatric ICU. You are a certified saint.
Possibly. Our doctor was the same for both and she was AMAZING. The issue is that the nurses changed all the time even when we went into critical care (24 hour coverage) mode. I don’t think this is common. Truly everything that could have gone wrong did. That being said, due to his terminal agitation/delirium- the prospect of me caring for him without 24 hour help should have never been an option on the table. Having to tell my strong, fought like hell husband, that he could not walk anymore- over and over and over again- would make me sob every time and he’d get angry at me and even though I knew it wasn’t really him it still really hurt. These are all memories I wish I didn’t have and largely why since April 22nd I don’t think I’ve slept more than 3 hours in one stretch.
Oh my gosh....I am so sorry that you had to live thru that in addition to losing your husband. What a nightmare. Again thank you for many here. Your bravery to share all of this is so amazing. I hope you’re getting some grief counseling to help you thru.
I'm so sorry joekaty that you and your children and Joe's last moments and memories of him were so traumatic. I do appreciate you posting this and making us aware and prepared for this awful outcome. Will keep you and your kiddos in my prayers for peace and strength.
Thank you Katy for sharing. I am personally not yet ready for hospice but given the number of treatments I've burned through in less than three years and the aggressiveness of my disease end of life care may come about on short notice. Though your description may be frightening, it's a possible future we all must face and as you say knowledge is power. It also inspires me to procrastinate on dying as much as possible
joekaty I am so sorry for the pain and trauma you have endured through your husband's death. All I can do is pray for all of us that our loved ones find a peaceful end.
As always, a much needed perspective from you, JK. To hear that Joe's last days were a despair to you in spite of your extensive experience and preparation breaks my heart ...but I will remember your words and share them with my wife (a former paramedic). We need to be cautious and realistic about "last wishes" no matter our plans. - Joe M.
I think end of life care is wonderful and humane. You may not like the decision, but fortunately it's not your decision to make for someone else. I hope you will keep your hurtful opinions to yourself - it's difficult enough without a person not in those shoes second-guessing you.
It is usually wonderful and humane- I’m a hospice advocate and palliative care was also wonderful....and there are rare exceptions when inpatient care is preferable. I wish I’d known that... I’ve been present for many beautiful home deaths. Wish Joe’s had been one of them. I just didn’t know any better.
I have heard here too that our hospital is very well informed and helpful with the Death with Dignity process. Other counties - not so much. In Washington, hospitals are required to post of their website their approach to death with dignity.
As a matter fact I do and its not meant to be hurtful. we must stand together to change our healthcare system which disserves us. All my opinions are allowed to be heard unless you want to change Our constitution. If you dont like them its your opinion too.Somethings you say are not entirely accurate so I bite my tongue
PLEASE correct any inaccuracy from me. I strive for accuracy and can usually provide evidence if asked.
I'm not laying down a law, just pleading for kindness. Remember, you are responding to a fellow human being, not changing the healthcare system. Maybe write to your congressman if that is your purpose.
I’m going to be very direct and encourage you to alter future postings with others. Yes free speech is a right, take the fight to other venues. In my situation have shed tears and heartbreak as our family made the decision. At this time we need love and support, not feeling judged or argued with. I have stopped reading responses because I can’t deal with feeling judged. Please cary on your medical reform battle elsewhere.
Each of us needs to make own decisions. My situation is not average, aside from prostrate cancer, breathing is becoming difficult, likely to get worse, herniated disc painful no effective treatment available, only morphine for pain. I will live out each day to the fullest but if I die tonight I’m ok.
My sister is dying right now from met breast cancer.I make decisions for her same way I do for myself. I did for my mother,my father. And the neighbors next door. Its always your choice to do what you feel is right. Just dont let the holier than thou bs you into a wrong position.People who say because they did it makes it correct for everyone.I tend to that with ADT as thats what I did.Many men have survived with it who had no hope at all. Gods Blessings and Good Luck to you.
my sister had a kyphoplasty due to a compressed vertebrae it is 95% successful.The drs at sloan thought it wa caused by cancer which was entirely wrong. Its an out patient operation takes 2 hours. Cant they give you a cortisone shot?
Herniated discs can be fixed. Two sick cousins had them fixed in the Hospital years ago and they are fine.My wife has a herniated disc....she did no Tx and she is fine.There are plenty of youtube videos to show you how to have it fixed.You havent said why your breathing is difficult..I am not doubting any of your symptoms..I am trying to help you.But you have to hang tough.
Re disc have tried physical therapy with top guy, didn’t do the job, tried spinal injections, failed. 2 doctors say surgery only option, but not for me. In my situation have less then 30% lung capacity, not likely to do well with going under. Aside from PC have sarcoidosis, creates granules in lung, not unlike lung cancer. Been to one of top doctors, no further treatment available. Will be fatal over time.
We did ask for that and it was denied. Sometimes it is approved and sometimes it isn’t. One thing I’m sure you know but many others don’t is that you can 100% go off and on hospice...they don’t like it particularly but it is your right. So, say you’re on hospice but have a specific met causing excruciating pain and hospice care denies you can sign off of hospice, receive targeted radiation, and then go back on. Just info. Education is power!
To expand on Tall_Allen 's response, when I was first diagnosed with NEPCa with a big tumor in my bladder, urination was so painful it was all I could do not to scream in the men's room. Within a week after my first infusion of chemotherapy, the pain went away. I was shocked, I did not know results could happen that fast.
Tall_Allen my husband has just entered hospice. We are free to rescind hospice at any time to receive palliative care. There are huge advantages to caregivers by accepting hospice care: I have someone I can call 24/7. We have nurses and social workers who call regularly to check in on us. I have access to bereavement counseling during his last days, and for 15 months afterward. They arrange to get us durable medical equipment and services like bathing aid.
We could not get services like this from oncology or primary care--it just doesn't exist. We can't afford full time in-home professional care. We live in a rural area a half-day and a ferry ride away from a hospital--if he was inpatient I would live out of my suitcase for the days, weeks or months it will take him to end his days.
Right now my husband is at home. Every day we have friends come to visit. We get to hug our dear ones and play with little children. We are blessed that hospice allows us to stay here and find meaning & joy in every day we have left.
We have no family nearby and I am 100% responsible for my husband's care. We have friends to help out but it isn't the same as having access to professional help at all times.
My husband doesn't want to die in a hospital. I will do everything in my power to keep that from happening--it will be my last gift of love to my love. I know it will cost me but I am willing to accept that cost.
Tall_Allen yes, it is. Thank you for all you do here to help both those afflicted, and those who are caring for them. You research and advocacy has been invaluable to me these past five years. 🙏
Wild Rose is so right. My husband's cancer traveled to his lung. Told by oncologist at hospital he could go home with morphine to die in a few days or they could insert drains in his pleura and have them drained twice a week. We chose the later with hospice. Fantastic nurse. Pain relief was oxycodone and months later morphine. In month four he also became restless and aggitated and tried to walk himself. Fell twice when I was out of the room. No family. Just me . I could not handle him myself. Hospice arranged to have him moved to Hospice House. Beautiful private room. IV morphine. Attentive caring nurses. He died 5 days later pain free as I held his hand.
Wow .... kripes big pike .... you sure have an extra helping on your plate there. I sometimes sit here ruminating about my awful zombie adt, my main trashed APCa , and my second cancer ( skin cancer ) that pops like popcorn on my face and right forearm all the time ..... but brother you have me beat hands down. Not like this is a competition or something. I think Tall_Allen has a good recommendation there ... full hospice lacks a lot that you “ could “ regret giving up later. I shockingly escaped full inpatient hospice ( for now ) , I think I know where your head is probably at generally.
I wish you all the best warrior and I’m rooting for you to wring out all the pain free ( or nearly ) additional weeks and months you are able. Big hug out to you brother .......
I needed to be more clear in posting, I get hospice care, support, for the breathing, lung issues, still am in palliative care and getting treatment for prostate cancer. When wife and I started hospice discussion did not know we had option to continue treatment outside of hospice. If forced to give up cancer treatments would have stayed in palliative care.
Interesting… hospice told my wife and myself that entering hospice would mean cessation of any treatments except comfort. No additional life extending care was possible after entering hospice. A kinda end of the road thing. What you have sounds considerably different than the care we get here. Basically they would keep me pain free and my wife and my self’s emotional needs attended to but I had to agree to give up anything / everything else. Its interesting that your doctors are giving you life extending treatments on the one hand and simultaneously stopping treatments allowing you croak on another . ( maybe they ran out if productive solutions) . I’d be at a loss to understand their overall perspective.
Clearly you have a complex situation with lots going on. The good thing is that you are still receiving life extending cancer treatments… you aren’t lying down for that final sleep on those yet ….. that’s a good thing. Those are some strong tough choices you and the wife are making …. I wish you well whatever you choose brother. You are a tough hombre.
!!!!! ….. omg …. Yayahahaha yayahahaha. I might as well throw in that Z71, LTZ Silverado Transport vehicle with hitch lift too ….. right ???Yayahahahayayyaha. Tharze already vultures circling I can tell you yayahahaha. Of course I’ll be dead, it’d be mox nix to me but you’d have to deal with “ the hammer “ to get to anything here …. Uh , naw … you couldn’t even drive it with your arms missing. She already considers everything here part of her estate inventory…. You’d have better luck slapping around that pit bull down at the wrecking yard than dealing with the hammer.
The hammer 🔨 can keep the pick-up, I got my own...just want the e-tryke...can't fault a brother for trying...I bet lulu700 is eyeing the puppy up too...
But as I said...I'd sooner have you ride it....just sayin
Yayahahahaya ....I had / have been giving a lot of “ stuff “ away. I had a vintage $2000 ( used value, prolly $30K new) laboratory research microscope I was trying to get rid of. Pick up only. Had it on CL for 6 months for free ...included a complete microbiology lab. Not a single interest. About ready to toss it but one last try on Reddit microscope channel this time. Place went crazy. People in Canada , Europe freaking out. Everyone wanted it. No one here tho. After 15 minutes I got a reply from a lady .... I didn’t take it serious , but it wasn’t an offer , she really wanted it. It was gone 15 minutes after I listed it. I put it on the porch and her ( massive ) male associate came and took it all away. I’ve given friends many of my toys ..... like a long range Thermal Night vision scope of the same type the FBI and border patrol uses. The hammer has put her foot down now ... and has stopped me .... makes her feel like I’m slowly disappearing yayahahahaya. I guess I get that. Probably like I’m giving away the kitchen sink too. Its her stuff now, I’ve got to respect that. She wants to keep everything .
If you can still ride a bicycle then “ ebikes “ are more fun and easy to handle , than the etrike, and transport on a bike rack. They give you super powers and make you feel 15 again. They are all over CL and local bike shops and used ones sell for very affordable low prices.
I had to get a T-shirt printed up “Don’t hit on my wife, I ain’t dead yet”. She gets a lot of male interest in the community. “Howdy ma’am, is there still a Mr.?” Am with her most all the time again now that my spine has healed. Sorry friends, she gets everything: Motorcycle, E bike, microscope (just monocular for forays to tropics), Mateo the dog, Japanese swords and watches I never wear.
Boy .... I wrote you back a long “ smok’in “ response but decided to erase it yayahahahaya.
I think I can say that the hammer has changed up dramatically and is closer and more caring than at any time in the last two or two and a half decades.
I married her “ through sickness and health “, “ for better or worse “ .... until death do we part . I’ve stuck by that 43 years ..... under , what was , at times, dire circumstances. I won’t say much more here ... no point ... but I think we sometimes need to be glad what we have left in life ....
sounds like you have a comfortable , loving, “ traditional “ relationship there to take you to the end .....how great is that !!!
Sounds like you are messing with me, ...I love Japanese swords and watches too. The hammer is a watch freak too. Trippy.
Back a couple years ago, I bought the hammer a custom Omega Seamaster chrono . It’s in a 38mm unisex custom visual back case ..... to show off it’s beautiful automatic movement. I also bought her a 38mm Jules Weil , visual back, moon phase , 11 complications ( valjoux 7751 ) , cosc cert watch .....both in matching winders. The hammer probably owns a couple dozen watches. I sold all my watches except one that I never wear.
I like wwII Japanese officers swords , preferably with an old family blade in them. Sold all those now too Yayahahahaya yayahahahaya. Small world buddy ...
Well ..... there’s never been a larger more diverse selection of bike seats.... many specially for the mature adult. They are easily changed out. Riding a ( 750 size motor or larger ) ebike is a thrilling dream experience. It makes you feel like you are 15 again and have springs in your legs. You can go for 30-40 miles effortlessly....or dial in as much effort as you want for the exercise. Go rent one at a local bike shop ...try it out. Used ones are common in local bike stores and CL.
Good for you...We rejected hospice for my sister. It tends to take an off the hook doctor further off the hook. Its a ploy and I dont trust it. Once burned twice scared.Is it interesting that demented doctors , hospitals and hospice belong in the same circus?
Pls make sure you can still call 911 to go to the Hospital if there is an Emergency. Dont get trapped by that. Hospice doesnt care to keep you alive. It s pre burial.Its do not resuscitate which is BS.
My mother was recently in hospice care at a local hospital. She actually did well the first couple months and I questioned if we’d made the right decision. Was told that some people choose to leave hospice if they improve or change their mind...it’s not a one-way street.
And the end of the day it has to be your choice and if u feel it’s the right one then so be it keep fighting little warrior until you decide you’re ready xx
Well, it sounds like a very tough road you have traveled. Many of us have a good idea that we will die prematurely from PCa but we never know when. You will hopefully live pain free but lucid to spend time with family and friends.
I will wish you the same as I would want. Have a peaceful journey, knowing that regardless of age, you have lived the fullest life you could. I believe our souls are embodied in energy and that we live in a continuum and maybe for you it's heaven. When we know it is our time, it takes courage to acknowledge it. We will all be thinking and praying for you and your family during this time. Do let us know how you are doing, if and when you are able.
May you finish your time in this life free of pain and anxiety, supported by angels and all who love you. Satisfaction and fullness for a life well lived. “A life well lived is long enough.” (From The Astronaut) 🙏
will be thinking and praying for you Bigpike. I have thought about my end of life someday when I no longer enjoy life, a burden to my family, and no longer able to care for my self. My thought was VSED and hospice for when I am in pain.
Our hospice experience was one of the most beautiful things I have ever experienced. The facility was magnificent, but more importantly, the staff were the most respectful and helpful people I have ever met. The doctors would sit and listen to me for as long as I needed, the nurses helped with even the smallest detail, and every time I said thank you, they would say that they needed to thank me for letting them be a part of our lives. Try not to fear death. It is the culmination of our journey here on earth and, while sad, it is actually a joyful thing to realize that we are returning home to the One who made us and who is eager to welcome us. God bless you all.
So sorry, we all have difficult decisions to make. I can only think about living a life the best I can while I am here, working or not. I deserve to have a good working environment until I decide to stop. I do believe in both hospice and palliative we are all at different places, its important for me to just let people be who they are and get what they need. I never really want to be in anyone elses shoes its difficult to deal with my own. Blessing on your path.
Herniated discs can be fixed. Two sick cousins had them fixed in the Hospital years ago and they are fine.My wife has a herniated disc....ghe did no Tx and she is fine.There are plenty of youtube videos to show you how to fix.You havent said why your breathing is difficult..I am not doubting any of your symptoms..I am trying to help you.But you have to hang tough.
I was given a handout last year to describe the difference between Hospice and Palliative Care. I don’t see anything that you need on the palliative care that is not on the hospice, but hospice is more. I don’t think it is too early, but it is better to be a bit too early rather than too late and have to pick him up after a severe fall. My experience is that hospice is well equipped to help him, and you deal with the emotional aspects of coping with his progressive advance in symptoms and perhaps things like restricting his access to things that will be dangerous for him. Also, to help in the physical planning and purchase of equipment for caring for him as his already limited mobility becomes worse.
This is page one and comes from the NHPCO. National Hospice and Palliative Care Organization. A social worker from the hospital gave it to me to review with my brother's children and wife. It was helpful and the hospice services from Penn Medicine were wonderful.
I will try to post a picture of page 2, as I struggled to find a format that the site would accept.
Thanks, have been in palliative care, can return and exit hospice any time. My wife needs the support. Frustrating the cancer is being contained but now breathing challenging.
Thank you Stevemarr. My husband has decided on hospice, and the access to help on the phone 24/7 is a HUUUUUGE relief for me. We have no family nearby so I am 100% responsible for my husband's care. There's no way I would get that just doing palliative care from oncology/primary care.
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Mike is on hospice
Is hospice care what we need?
ADT or Hospice?
