My medical oncologist has recommended I enroll in, income hospice. Anyone have experience with in home hospice? I would love to hear your comments on on the pros and cons and your experience with in home hospice. Thanks.
In home hospice: My medical oncologist... - Advanced Prostate...
In home hospice
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chascri
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We had in home hospice for my father in law. They set him up with a hospital bed, commode, etc. The only problem was he waited until near the very end to start hospice, and did so on a holiday weekend. It took a couple weeks to get the nurses and aides scheduled, so as a result he only lived a few days after the hospice process got fully up to speed.
He had also chosen a funeral home ahead of time, so when he did pass we called hospice and the funeral home, and experienced people took care of everything.
Two other anecdotes: they disabled his defibrillator so that when the end came, it wouldn't painfully try to shock a few more minutes out of him. We also had to get the gun out from under his pillow before strangers started coming into the house.
I highly recommend it. Instead of being in a hospital and under treatment, he spent his final days resting peacefully at home. It was better for him, and better for us. No stress over treatment decisions and such, just keeping him as comfortable as possible.
Is the gun still available and for sale?... I have my own pillow....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 11:20 AM EST
We don’t need a gun, the bullet is already on its way brother. Yayahahahaya 💪💪💪 ✌️✌️✌️. 😁
How true...........😢😢😢........ a 32 Kaliber.......
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 1:58 PM EST
Mine's a 45, brother....as in 4+5 Gleason.
You'll have to end all treatments besides hormone shots and the goal of therapy becomes palliative. To keep you as comfortable as possible. If you need oxygen, they will give you oxygen. If you need pain management, they will give you pain management. They will still give you your hormone shot.
They won't collect blood work. You won't be able to get any other treatments. They will not transfuse you if you need to be transfused.
It's an intense decision but one in which you can change your mind on. I would ask myself three things.
1. Are there any other treatments available that my doctor is not offering me.
2. What is my quality of life.
3. If I do plan on trying to extend my life further, what type of quality will I have.
Another take ....
I was offered .. even “ strongly “ encouraged to enter hospice in October 2018 by my oncologist. They thought I had , at best, a few weeks left. End of November 2018 tops. My bi-weekly bloodwork was “ very “ grim , my psa was 1400 - 1600 , my scans showed mets and tumors literally paving every bone / place in my body, I was very ill.
The problem for me was that entering hospice seemed like giving up and I had yet to receive a single treatment. My wife ( and me of course ) was totally devastated. I rejected hospice in favor of giving adt treatment a try and now , around 15 months later I’ve experienced a kinda miracle response to adt. My psa has been undetectable for 13 months, ALL my bloodwork is back to totally normal . Adt is horrendously difficult for me, crippling my life .... but , as my wife likes to say, better than the alternative.
I’m under no illusion, I get it, how screwed up my life is and that I’m circling the drain, but I’m fighting like hell for a little more time with my wife and a little more life to smell the roses.
Most people ( nearly all ? ) also considering hospice probably wouldn’t be nearly as lucky as I have been so far ... in hospice you will be comfortable and probably mostly pain free ... and staying at home with loved ones far outweighs a sterile facility experience IMHO. Most hospice situations don’t include actual treatments like adt , scans, or chemo etc. . My hospice doesn’t. I think I know how you feel about entering hospice brother and I wish you the very best . I’d give you a big hug if I were there. I’m thinking good thoughts for you ( transfer of merit ).
Peace 🌸🦋🌼🌻 ✌️✌️
Hospice for us has been terrific. My wife has advanced Alzheimer's and is non-communicative, bedridden and sleeps about 24 hours per day. Hospice provides all meds that she needs, sends a nurse at least one per week and is available 24 hours per day for emergencies. If my wife gets sick and needs hospitalization, they take care of everything including transportation to the hospital and its all free compliments of medicare. My wife is on hospice because she is near the end. For a person to be placed on hospice, she has to be recommended by a doctor and it's normally done so with the expectation of being in hospice only for a few months. Not sure if you would qualify under those rules.
jal
At this point in time my medical circumstances have changed dramatically and , hopefully, I wouldn’t be hospice material.... yet. Back in October 2018, when I met with my entire medical team, my first meeting with my oncologist... my oncologist brought in the hospice nurse and consular and my wife and all of them suggested I should strongly consider hospice straight out ( not my wife ) They thought it was my best option. I was shocked, tho, because I had never even had a single treatment of any kind , at that time.
They said it was far too late for surgery or radiation, but Dr Ahad offered to try lupron - Xtandi - Zometa and keep a close watch on me as I had a lot of pain and was miserable suffering sick a lot and my body was shutting down .
Almost immediately my blood work perked up dramatically.. marching up from the depths of death ( all my bloodwork was “ well “ below the low norm zone and marching steadily down to zero measured every two weeks , my whole body was shutting down except for the bone one. alp or alt one of those which was up in the 600s or more )
Right now I believe I’m in treatment induced PCa remission , and for 13 consecutive months. Unfortunately the adt is seriously hammering me, possibly because of the massive met load and the damage before I started adt. Now ... it’s me scurrying around trying to keep my wobbly blood pressure , bg and cardiac issues ( Xtandi hammering my heart ) under control to keep “ the cure “ from giving me a stroke or heart attack. Obviously I’m playing the “ odds “ juggling adt over PCa... one will get me for sure the other somewhat less of a threat Yayahahahaya.
The bottom line is that I’ve received , at least, a year of grace and I feel like it could be a couple more.... who knows ? Maybe even more than that. Adt has worked miracles in my life ... got me right before the lights went out and I treasure this extra life I’ve been given. If I had chosen hospice ..beyond doubt i wouldn’t be here typing this now .
I plan on doing hospice in my home ... I’ve already got my bar-b-cue arrangements set ( cremation ) , all my financials sorted etc., a large room cleared, my wife here being my caregiver. I think I have everything covered , but my plan is to hang on doggedly for years and years and years and mess with everyone’s head yayahahahaya. I’ll show ‘em .... hell no, I won’t go yayahahahaya yayahahahaya. Not today, not tomorrow either probably ... after that I’ll take it day by day. We’ll see.
😁😁😁💪💪💪💪💪👍👍👍🌻🌸🦋
Excellent points and an excellent story. I want to say I can't imagine anybody going into hospice without trying at least a few treatments first, but in my father-in-law's case that's exactly what happened. He had previously fought back from heart disease, had joint replacements due to arthritis, etc., etc., but at some point in his 80s, as a widower and increasingly unable to do the things he enjoyed in life, the fight mostly went out of him. When he developed kidney cancer he let it take him.
Hospice is one of the most personal decisions I can think of. Some people want to fight to the very end, others want to leave with some dignity and a sense of control.
Hey brother .... I don no nutth’in about dignity ... I’m gonna scratch , claw and fight until there is nothing left in me yayahahahaya hell no I won’t go !!!
To be honest there are times , now and then, when I wonder if I can “ take this “ any longer .... adt has kicked my gluteus Maximus up between my shoulder blades ... some days it feels like even eating my dilaudid ( 5X more powerful than morphine ) or vikes , whatever , is like eating a spoon of sugar and nothing seems to make the pain and heavy sickness go away. I don’t want the opiates , I’m sick of them .... but when I really need them , I don’t have much choice.
Yes hospice is a personal and very heavy decision ...
I’ve sat across the table with my wife and both of us cried when a table full of doctors and hospice people are sitting there with that “ look “ on their faces ... urging me to go. I doubt that it’s possible to convey the heavy feeling you are having right then. Seems 10X worse when you see your wife break down and lose it. So helpless ....
I’m hoping to still enjoy some time with my wife and do a few things I like to do ... hoping to enjoy another year of the magnificent spring experiences that only the Central Valley can bring. It’s starting up right now and I’m gonna smell enough orange blossoms to clog a vacuum cleaner. I hope I croak peacefully painlessly in the middle of the night in my bed . That would be my first choice , my wife’s as well.
It’s all good ... day at a time ... that’s good for any of us.
💪💪💪💪👍👍👍👍😁
I like your attitude! I haven't been face to face with a hospice decision yet, but the wife and I have talked around that topic, and about the party that should be thrown after I'm gone. Is a difficult conversation but it's also oddly freeing.
It's amazing what we can suddenly cope with when given no other choice. I use to live in mortal fear of cystoscopies. They royally suck, but I put up with them in hopes of getting an early warning of cancer's return. Too bad the urologist couldn't see the enormous NEPC tumor in my bladder. I mean, he was only looking right at it about 3 days before my fateful CT scan, but I digress.
Keep up the good fight, one day at a time indeed!
Well you know that you're one of my favorites here and I'm so glad you're with us. Remember If I had to spend time on a deserted island with someone I would definitely pick you. (You would be easier to boil and eat) yayahahahaya yayahahahaya.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 11:33 AM EST
I too will not die in a hospital hospice unit. I have been with too many men to allow myself to undergo that end of my life. I have stocked up sufficient meds to allow me to die peacefully on a day of my choosing, and that will come when I no longer am able to look after myself and my mental and physical health deteriorates to the point where there is no quality of life.
That is why I implore all of you out there to live large while you can, make up a bucket list and try to do as many of your last wishes/dreams as you can.
Love those that you are with, only spend time with those worthy, get your affairs in order, and know that you are not alone was we, your brothers on this site, will soon follow your path, so we might meet again.
God bless and may your remaining days be filled with joy and happiness my friends!!!
I have had experience twice with hospice; one home based and the other in a homelike setting. I assisted an elderly friend with home based hospice for her husband who was dying of cancer. He was already nearly comatose when he was transferred from a nursing home. The problems confronted with this type of hospice were that a family member was expected to do some physical care and maintain vigilance for the patient’s condition. My friend, the wife, is a tiny, frail woman. I sat with her when a supervisor nurse came to explain their services. The supervisor initially offered a nurse who would come to the house with supplies twice a week for a short visit. A hospice employee would always be available by phone. My friend was on her own in taking care of her husband and I knew there was no way she could, for example, administer the pain medication which was a suppository.
I helped advocate for her to receive 24 hour assistance. That happened after much discussion but unfortunately, hospice sent two people, one of whom was a trainee. They spent a lot of time in chitchat and had to be asked to help time and again. I stayed with her for hours each day but went home to sleep. She never could have handled this on her own.
The second hospice experience was for my brother-in-law who had Non-Hodgkin lymphoma. We were able to place him in a facility that was a large, comfortable residence. I believe it could host about 7 patients though the rooms were never filled in the 10 days he was there. He had what I would describe as a large master suite. Family members could stay overnight in comfortable recliners. The bathroom was huge and linens were there for people staying over. There was a kitchen with drinks and snacks. All the rooms had flowers visible from the windows and a hummingbird feeder. The grounds were lovely and offered a quiet place to sit in the sunshine when we needed a break. The staff was attentive and very caring. They gently explained what was happening to our brother and what to expect. They were exceptional people whether an administrative person or a nurse. I forgot to mention that their services started while he was still in an acute care hospital.
I believe it would be a great gift to one’s family to explore these options before they’re needed. My husband, who is the Stage 4 PCa patient, is researching prepaid funeral plans. That doesn’t mean he has lost hope or given up. Indeed, he is responding quite well to treatment in the 28 months since diagnosis. Because of the wonderful programs and care received when his brother was dying, we will use the same hospice program if that becomes necessary. By the way, that hospice has aftercare groups for survivors. My suggestion is to consider your family and especially the one who functions as your caretaker. What will work best for you and for your loved ones?
I wish you peace on your journey. Mary
My first wife was in hospice for 16 months prior to her passing. The assistance we received was valuable. It is a major decision. I wish you the best in your journey.
For patients with cancer who have exhausted all reasonable available cancer treatment, hospice is a good choice. Pursuing futile cancer treatment, at that point, may be counterproductive. Research suggests that for such patients with cancer, those who opt for hospice care may actually live a bit longer. The advantage of hospice is that the goal will be to control your symptoms and keep you comfortable, by whatever means necessary, rather than trying to treat what has become an untreatable disease. There are fewer constraints on medications for symptom control, including pain medication. A good hospice will also have methods that are not familiar to other providers. Finally, there is a support team for both patients and family beyond the nursing and medical care, including social workers, aides, volunteers and chaplains.
Regarding hospice at home, it is the preferred location for patients and for hospice staff generally. It avoids hospital stays, unnecessary testing and treatment, and allows the patient to have care in the most comfortable and familiar place possible with the presence of friends and family. Almost everything needed can be provided at home. If it is time for hospice, home is the place to do it if you can. (Full disclosure - I am a hospice certified provider and I have been doing hospice work for over 20 years. I know what I will do when my time to choose comes).
I told my wife I want my hospice in a strip club....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 11:47 AM EST
That’d be a place where they “ strip “ you ... and then “ club “ you ( shiny leather wrapped club of course ) ? ...... that’s what your ex told me she wanted . Yayahahahaya yayahahahaya 😂😂😂
Yep.... and something about shoving that pole somewhere..........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 2:00 PM EST
That makes me think of
youtube.com/watch?v=GU0d8kp...
-Sun
That is absolutely hysterical.... I loved MP ... watch out J-O-H-N. You’ve got a contender here yayahahahaya yayahahahaya. Good one 😂😂😂😂.
Some of these threads can wander off into grim city .. we need humor to lighten things up.
💪💪💪👍👍👍
Thank you........... They were my kind of guys.... (you too and of course Kaliber)...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/19/2020 7:32 PM EST
Thanks for post. My husband has been on Hospice since November 2019. He is slowly declining. But holding his own. I felt Hospice was needed as all meds have stopped working and his PSA is doubling and rising fast. Cancer spreading faster.
I felt Hospice could better assess his comfort needs and help me manage his growing confusion. I really needed support to back me up as well with issues like driving while impaired. He loves getting out but his driving is awful from his pain meds. Speaking of pain meds his Oxycodone is propping him up and that is pvery good as long as he stays away from car. It gives him energy where he would not have it otherwise.
Watching him lose his freedoms one by one breaks my heart. This whole thing is just hard to watch 😥
Sorry to hear about your difficulties. If you are not already doing so, take advantage of the counseling services from the hospice. They should be there for you too, not only for your husband. Ask to speak to the social worker or the chaplain or even a bereavement counselor. If your husband's periods of confusion, or anything else, are stressful for you, there should also be respite care available as part of the hospice service - admission to an in-patient hospice unit for a few days so that you can regroup.
Thanks John.
I am going to call today about this very thing. I have questions that I would rather not ask in front of Hubby. Being a nurse I get to medical at times and he does not like it and I get it. Great advice.
Thanks. Very helpful.
We just ended our hospice experience when my husband passed of MCRPC on 1-24-20.
We did refuse the referral to hospice at first.
But after 3 hospital lengthy stays trying to receive treatment for new Mets in liver, we went ahead and said yes to Hospice-
Each hospital visit was very serious and almost 10 days long. He was very tired of treatment.
It is a constant battle with yourself-did I allow hospice too early? In your case it sounds like you may want to speak with other oncologists.
I still wonder if there was some other treatment out there for him.
We will never know because hospice was called on 12-09 and we had 2 months before he passed .until 1-24.
I am so sorry. I did not see your post. I hope that you are finding your way forward.
😕
I'm so sorry for your loss 😥. I hope Hospice was helpful for you both.
My husband has been on in Home Hospice for three month now. He wants to he home and I want him here. Make sure you have enough support for you and your husband. In home hospice can have challenges as the cancer progresses and he needs more care. Talk to your Hospice Team about what to expect. God bless you.
WE ARE ALL GOING TO DIE:
This is a very disturbing but very very important post and one, as sad and as tough as it is, should be expanded upon by our crew on this site.
There are so many factors involved in dealing with end of life issues that place huge pressures and burdens on those of us who are sick and face an end sooner than later.
Pressures from family to stay around, even if in great pain and no hope for recovery, loss of quality of life so one is basically a vegetable, religious beliefs and the fear of taking control and choosing when to die, not having financial and other issues settled in our estates, fear of the unknown and in facing death itself, and the list goes on.
There are no easy answers to many of these questions and concerns, but equally there are actions that we can take to lessen and relief ourselves of as much of the stress as we can.
The good that comes out of knowing that one has a clear timeline, allows one to get things cleaned up, live large in one's remaining days and to reflect upon what is important in life. No easy tasks are some of these large issues, but ones that we, at least have a chance to remedy, at least to some degree. For those who just drop dead of say a heart attack or car accident, there is no time to get one's house in order, to tell those we love that we do love them, to put our financial affairs in order, to get rid of stuff we no longer need, to generally wrap one's life up so that the path forward is free from stress and pressures.
Please add to the list I had put in this post and maybe we should start a new post that just has some of the questions and concerns addressed in it.
As I noted, for me, I have sufficient meds to allow me to choose when I die, if something else does not get me first, and I have have seen this advance preparation and life ending cleanup happen with others, and I strongly believe that some peace was had by the process and allowing one to die with dignity and at a time of one's choosing.
Most of us will lose the battle with advanced prostate cancer, all we can do is live as best as we can with it, and in the end, choose when to kill the cancer that has been killing us, some for many years.
We might lose the war but we can win the last battle against our common enemy.
Stay well, think positive, sharpen your swords and rock on!!!
So sorry you are facing this decision. You should not have to let your caregiver make the choice. None of us want to be a "burden". As long as I am rational and physically able to take care of myself, I would prefer to be at home. If the time comes, then I would like those who deal with this on a daily basis to take over. Assisted suicide, saved up meds or a hose in the exhaust pipe have all been mentioned at times. I have considered them all. I am not at that point yet, and do remember someone here saying suicide was a cowards way out and just made the survivors heavy with guilt. I certainly would not take that route like a thief in the night. The theme to MASH is Suicide is Painless. Of course Painless survives. But we are not in a fairy tale. Forgive the rant. I remember you from when I first dipped my toe into the waters of this site. Just call me Charlie Brown. I don't think it is always an either this or that decision. I'm thinking home hospice until a person needs professional care. I read that 90 percent of doctors die at home. If you can afford 24 hour care, I think that is great. Most of us can't, we weren't doctors or peddling cancer medications. Sorry chascri, probably nothing in this that you can use, and it grieves me so. I do give you my best of wishes.
BTW you can always count on me to kill you...... (for a fee of course).....and it will be painless, cause I won't feel a thing...
google.com/search?rlz=1C1SQ...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/21/2020 8:10 PM EST
Thanks
This was a good post for those considering hospice as we are for my husband. He is in the 19 year survivors club but has many comorbidities now at age 77.
We have tried to live our final days together to the fullest, but recently got knocked on our asses on our pandemic trip to visit my 92 year old Dad. Husband went down hill quickly and our expensive trip was lost. Now I am struggling to decide whether to keep up the fight which has gotten so much more difficult during Covid.
Friends and neighbors who have used hospice have mixed opinions. The negatives mostly seem to be because hospice came in too late.
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