To enter into Hospice, one needs a diagnosis of an expected end within four months, around here anyway. Care could go longer, much longer but they won't take you on until that diagnosis is in place. Here it would not be true to think "hospitals have fiscal ties to certain hospices ". My experience is many good friends who have taken on Hospice patients. You would be best advised by someone in your town. It appears there are many differences depending on where you live.

Chisue I have no help for you as far hospice goes. I' m very sorry to see this post. I do have special prayers and care for you dealing with this horrible and often misunderstood disease. Is CAR-T treatment an option for you? Have you already had Xgeva shots for bone strengthening? If I'm overstepping I sincerely apologize. My DH was diagnosed with stage 3, aggressive MM in June 2023. He had 28 wks of chemo and 3 other drugs then a stem cell transplant Feb. 2024. There are so many new treatments I pray there's one for you. You have my prayers going forward to be as pain free as possible.

edited to add: Kendrah thank you for all the knowledgeable information you provided.

chisue, I'm so sorry to hear that you're at this point. My mother died of MM, peacefully in her apartment, under hospice care, many years ago. I don't have any particular advice for you, but I just wanted to say that the hospice nurses, caregivers, and doctors were all wonderful, compassionate people who took care of her, and also took care of me (I was her only child and we had no other relatives, although friends certainly helped out.) I can't say enough about the care they provided, not only physically, but also emotionally, to both of us. I wish you all the best.

I know you have been fighting this for a long time. I have a sister with the same issues though for the moment she is doing well on the latest treatment. She has had some bad times already. I really feel for you. I do think of your situation often.

If you trust your medical team I would ask them for advice. It has to be something that comes up frequently with this awful disease.

Kendra has excellent advice. I dont have as much experience. I dont think you will have the sorts of problems I saw. Witless family members who never read the information their excellent hospice nurses left. I read it and they wouldnt. They created fusses over the facility (she was in a nursing home) not giving her her regular meds like insulin. They had to be talked down. I thought the Hospice nurses were amazingly patient. In another case the family ignored their family member and I was surprised the Hospice people didnt do more to help that person be more comfortable. I have heard great things. You have a loving husband to see to things. I hope you find the people you need. I will think good thoughts. I can see this decision in my own future.

patriciae

Chisue,

I am sorry you are going through this. You are such a lovely, sane, caring person.

I know nothing about hospice or palliative care. I’m glad some here are able to give you some ideas. I hope.

Arcy, I know a woman who lives in Masachusetts, at home with severe COPD. She has been under hospice care for three years now.

As for not being allowed hospice care when under a new, last ditch effort from a new line of medicine, that seems cruel. Hospice is allowing my ill friend with COPD to have Oxygen.

When my FIL was on his death bed, and SIL (an RN) and my MIL were struggling to care for him at home, they were sending for an ambulance to take him to the hospital instead of letting the sweet man stay in his warm bed at home. I asked, SIL if she could get him hospice. (When looking at him, he was so weak and I believed he would soon die.) SIL, a brusk know-it-all sort, very dismissive, replied that she could not get my dear FIL hospice care, because, she argued in her terse, bossy, know it all voice, ”That’s for people who are dying!” Part of me wanted to slug her.

The ambulance came. He was put on the stretcher. I begged them to please wait, just a bit. He had suddenly dipped, he was not going to live many more minutes. The ambulance people said that they could not wait. It was an ice cold February afternoon. The SIL and my MIL joined the ambulance men, “no waiting,” as my FIL was in the foyer, next to the front door, beneath an inhospitable overhead light.

Soon he was out the door and into the ambulance. I did not want him to be alone and didn’t know if my DH would be okay going with him (he was dying). So with evryone in a rush, and me having no status in that family, I spoke up and said that I would go with him, next to him, in the ambulance. The SIL and MIL exclaimed, ”No!” He DH said that he would go. He did so, thankfully.

My MIL and I were going to follow in my car. The ambulance started, then slowed, went into a lot to reverse direction. My MIL said to me, ”I believe my husband has just died.”

This was true. He did not live to even leave their small street. DH later told me that he was thankful I spoke up, jarred him into action, so at least his father was not alone.

Sorry, I have been pained by this for so many years and it still brings tears. My bossy, ignorant, SIL, had to run the show. Couldn’t wait or think and was abysmally ignorant.

I am not a cold person, but there are many who are. SIL does not give my DH the time of day. Never talks to him or responds to letters. It’s been years. But her sons, who DH loved, babysat for, attended birthdays, graduations, weddings, etc., also make no contact with him. Because their mother is a cold domineering person who has to always be right, always grab control. What a family.

People who are ill and suffering should not be alone. Period. If people get nothing else, they should grasp this simple kernel of decency.

Chisue, my dear KT friend, I am thankful your husband is well and can help you some. I hope you get the very best hospice care. I think you are top notch.

Please excuse me if I intruded. I am wishing you the best comfort, support and care. Warm wishes to your mate.

I am so sorry to hear this news, Chisue... I hope you are made as comfortable as possible in your remaining time.

Ouch to the broken ribs! I'm so sorry this is happening, but several people with backgrounds in this are giving you what sounds like great advice. I'm following along. Hope you find a great care giver, preferably someone who shares your love of the outdoors and keeps you involved.

Blessings to you @chisue as you continue your difficult journey. I think @Kendrah has provided a thorough summary that I hope helps you.

The services provided by hospice and palliative care companies are such a boon, not only to the patient, but to the family. We have used both services, but not in your general vicinity so I can't make a specific company recommendation. I chose the companies we used based on online reviews of the service and of their doctor and was happy with them. I found that the quality and attitude of the visiting nurse ended up being the most important part of the service for me.

Chisue, Do you have a support system other than your husband? Stay in touch with us! So many caring people here who have traversed lots of hills and gulches.

Does your DH have a support system?

I am continuing to hold you close in my thoughts.

Chisue, I, too, am very sorry to hear of this. My only experiences with hospice were just being a helper. Not in charge of making any decisions. My sister had pancreatic cancer and between her 4 daughters and myself, someone was with her 24/7. She only lasted two months after diagnosis. It took more than a year for her to get a diagnosis. What an insidious disease. Her husband, my brother-in-law, was in a hospice facility. They were fantastic people.

I will keep you and your husband in my prayers and I hope you can find a good group to help you through this journey.

EverythiEverything Kendra has shared seems exactly right. I will also agree with seeking non-profit hospice group. A friend is a hospice nurse and this advice came from her when I was sharing a hospice complaint.

Thank you all. It's been a wowser of a week, I went through the emotions in 2018 when I was diagnosed. Then...life went rolling along, thanks to monthly infusions that weren't very difficult. A first regimen was just a subcutaneous poke once moth (Velcade). In 2020 I got a second regimen, Darzalex, an infusion every five weeks. That is no longer working.

Friday I started a third and final regime of Kyprolis. I'll be infused once a week for three weeks running, then off one week and repeat. These procedures are accompanied by oral meds -- variety of lenalidomide. (Yes, something useful they developed from the terrible drug that maimed infants!)

Luckily for me, Northwestern Lake Forest Hospital opened in March of 2018. Our home is 10 minutes away. My DH dops me off and returns to pick me up when I call him a few hours later. I'm still ambulatory. The hospital will double in size in 2026.

A concern: Years ago I was active with a community based Visiting Nurse Association that operated on a sliding scale. Sadly the hospital conglomerates discovered this could be a money-maker -- no more compassionate care. I'm leary of these big outfits.

DH and I both have DNRs and POLSTs. I fear being railroaded into a situation where I will be kept alive against my will. I fear being unable to say 'when', and I know I need to stay out of hospital to avoid losing that control.

I will talk with the hospital social worker. I have an appointment with a hospice organization that is affiliated wih the hospital --that makes me uneasy.

There is just me, my DH, and one middle-age DS & DIL 25 minutes away in the city. DIL's own parents are 80's and in poor health. Currently they have one live-in, plus PT and others etc. coming and going.

Any do's and don'ts most welcome. What a help to *know* you all!

.

I have no information to share but I want to express to you my very best wishes.

EF

Hospice is federally regulated through Medicare so the qualifications and basic rules should not vary by region or area of the country. Here is a simple, easy to read over view.

https://www.medicare.gov/coverage/hospice-care

The vast majority of hospice services are covered through medicare and should not cost you much if anything. However, you cannot be on hospice while you are seeking curative care. Still, I think it may give you peace of mind to shop around for a hospice now, while you are mentally and physically able to so you can understand the services and select one for when the time comes. People usually wait until long after they need hospice to start doing this. It is a great thing to be proactive about.

Here is a link and phone number to Northwestern Lake Forest Hospital's palliative care department. https://www.nm.org/locations/lake-forest-hospital-palliative-care

Main Number: 847.535.7058

Call them now and set up an intake appointment so you have their team on hand to help you through these upcoming and ongoing rounds of treatment.

My mom's palliative team scheduled her appointments during her infusion times and just came up and met with her while she was hooked up to the drip. It was wonderful to not have to come to the cancer center for additional appointments with them. They are doctors, social workers, and nurses trained specially to help you through any side effects. And they will ask you about the kind of support you have at home and how your husband is doing. You should speak to them freely about your concerns regarding end of life care and not wanting to kept alive against your will.

A few suggestions along these lines - Make sure they have everything they need in your charts about DNRs and POLSTS.

Put an orange folder on your fridge with your DNR and POLSTS in them. It is a standard thing to do and a place for EMS to look for them if they are called.

I don't know how effective things like this are, but you can look into them - medic alert bracelets to identify of DNRs and POLSTS. https://www.stickyj.com/product/illinois-dnr-polst-id-bracelet-cr5285c

Chisue, I'm so very sorry to read this and feel my eyes welling up; I've been wondering where you've been as I haven't seen you post in awhile. You're our voice of reason! I hope your last med will sustain you for longer than the doctor believed it would and that they find a good way to keep you nice and comfortable. And very best wishes in finding the best situation to ease your mind concerning end-of-life choices, your husband and son. You've had great info here and I have no doubt you'll figure it all out soon. Please do keep in touch with us and feel free to moan whenever you feel the urge.

chisue - thank you for letting your virtual community of friends gather around you to offer advice if they can and hopefully offer some comfort to you. Most of us are sharing in your learning from advice given here so please know that you are helping us all by making us think about our own futures.

I cannot offer advice about what to look for in either hospice or palliative care but I have been thinking about your current situation in general. One strong thought I have is about your son. If at all possible I urge you to include him in conversations you have with potential caregivers. It will be helpful to him to hear what you say to potential hospice and palliative caregivers. I’ve no doubt your husband will be with you for those conversations but I think it’s so important that your son is too. You may have already had hard conversations with him about your wishes eight years ago when you received your diagnosis but these conversations will be from a slightly different perspective. He may be the one to advocate for you and give you the assurance you need that you will not be railroaded into a situation you don’t want. He’ll be crystal clear about what you do want if you cannot speak for yourself. I listened to what my mother said to me but I really listened to what she said to her doctors. Hearing what she said to them is what guided me as her medical POA.

The other thought I had is about my own very recent hospital experience. I was admitted via ER after ambulance ride from a doctor visit due to too low oxygen. My POLST states no long term oxygen or intubation etc to keep me alive if there’s no chance of recovery. The admitting Doc did ask me if I would allow oxygen while explaining it would be temporary only while reducing my C02 through use of BiPap / Non invasive ventilation. She was asking to be clear because of my POLST. Later, I asked a nurse about that and she said even with a POLST, they always prefer to confirm. My diagnosis which wasn’t known yet was pneumonia so it definitely was a temporary situation. My concern after the fact was about what might’ve happened if I hadn’t been able to speak. My reason for sharing this experience with you is that your son will be better able to help you and your husband if he’s included in this phase of your journey.

Can I offer my hugs, by long-distance, non-contact so as not to squeeze your ribs? But I'm sending the biggest hug possible. Love you.

Very, very, sorry to hear this 😢

Sending you peace and serenity as you encounter this next journey in your life ✨️

Chisue, I’m sorry to hear this.

Wishing you clarity and peace in the coming year.

Chisue, I'm so sorry you're in this position, although I'm not surprised you're handling it well. I have no useful information for you . . . my (step)mother died at home with hospice, but that was in Florida, in 1995. That was 12 years after Medicare first began covering the cost of hospice. I can remember--as you probably can--when there was no such thing as hospice care. It has had a profound effect on so many, including the living.

Please accept my gentle hug. And as a healthy distraction for you, I promise to post a final update on my refrigerator soon!

So sorry to see this news - my heart goes out to you. Can your Dr. advise/refer you in regards to hospice care?

No advice, but wanted to express my sympathies for what you are going through. I'm so sorry and I hope that however it goes, it is an easy transition for you and one where you are kept most comfortable and most in control of your own choices. Sending you thoughts of strength and courage and solace in this most difficult time.

And a request, if you would please share your info with someone or have someone in your family keep us informed should you no longer be able to do so. We care about how you're doing.

I can't offer any advice, but it seems you have gotten much good information from those here who have had experience. I am sorry to hear your last protocol is no longer working, and I hope the next step works well for you. We all care so much for you, so please lean on us in any way you need to.

Another here that has nothing to offer but heartfelt wishes for excellent care, strength, and peace.

No advice but my heart goes out to you--may the rest of your journey be an easy one.

I will just add that when my mother was dying and my sisters and I were taking turns caring for her at home in NJ, she had the most wonderful hospice nurses imaginable. I wish the same for you.

Prayers for you.

My heart goes out to you.

Some really great advice here.

And I second Annie's suggestion, please have a contact that keeps informed, should anything happen.

Chisue, I’m so sorry and sad to read about your current situation. I don’t have anything to add, as our experience with Hospice care with parents was too long ago. I believe you’ve been given excellent advice though, including to ask any friends who have used Hospice recently. I would also emphasize home health care when needed. Most insurance covers this, at least for a period of time. It was invaluable to me when I broke my femur and i’m grateful for my ortho doc for recommending it for several weeks.

Sending all my best wishes to you.

Chisue, you are in my heart and thoughts. You are so wise to plan ahead and not wait for an emergency situation.

In my mothers case, she had privately hired caregivers for two years but a hospice nurse came once a week. Frankly, she wasnt so good. She took my mom’s blood pressure and chatted with her as much as that was possible. However, hospice sent many supplies that were needed for a bedridden person.

Medicare supplied a hospital bed.

As it turned out, the regular hospice nurse was not on duty the morning my mother died at age 105. The nurse who came out that morning was wonderful and helped with all the final, preparations, which was good.

There also was a DNR paper prominently displayed in case EMTs were ever called.

I was grateful for everything I arranged in advance. I hope the next few years are a time of comfort for you.

DH and I both have DNRs and POLSTs.

you might want to think about also having a durable Power of Attorney for Health and an additional one for property. these documents should be drafted by an estate attorney. this will give power to whomever you appoint as your POA to determine things that a simple DNR, POLST, Living Will do not provide for.

i'm so sorry you are approaching this stage of life. as for hospice, i was able to have my husband at home during the last 2 weeks of his life. i could not have done this without my hospice nurses. to this day, i marvel at their ability to be both compassionate beyond words but also realistic in my day-to-day struggle to keep him comfortable.

wishing you the very best days possible as you navigate this time of your life and sending very gentle hugs. 💖

I'm so so very sorry. It's such good advice to have your DNR clearly displayed. It is sad how often it is not, and a can of worms is opened. I wish you the very best on this journey. May it be peaceful.

Because this is such a deeply personal journey, the caregivers one is assigned matter so much. I had a somewhat less than fabulous experience with Hospice for my mom. It was a highly recommended nonprofit, with an exceptional inpatient option. The main nurse was just not a good match. In hindsight I should have spoken up, but I too was hanging by a thread and just trying to figure it all out on my own.

My tiny bit of advice is to speak up if you don't connect with your hospice care team. It is ok to say you'd like to try someone else. This is YOUR journey, and it is ok to have strong opinions about who, when, and why.

I hope you find a good organization, Chisue. Big hugs.

My tiny bit of advice is to speak up if you don't connect with your hospice care team.

Such important advice. It is a time in life where you wish you didn't have to advocate for yourself or have a loved one advocate for you. But the right match and right relationship is just so important.

Chisue, I'm very sorry to hear of your declining health. You have been given wise advice regarding your questions. When Mom had hospice at home, we were very pleased with the doctor, nurses, and all others involved. As others have said, a good fit of the hospice team is a blessing.

I have no advice for you, but am sending hugs and hopes that you can navigate your life's events so that they best align with your wishes. I expect that one of the benefits of palliative and hospice care is that although your DH is willing to provide some help, outside assistance would mean that he can focus on your relationship without any worry about your physical care.

Adding my good wishes for you; I'm very sorry to read about your situation.

Odd bits of experience:

"you might want to think about also having a durable Power of Attorney for Health and an additional one for property. these documents should be drafted by an estate attorney. this will give power to whomever you appoint as your POA to determine things that a simple DNR, POLST, Living Will do not provide for".

Be sure your care team knows exactly who the POAs are. My mom married an abusive bozo in her late 80's. He was not the POA but siblings and I worried he would try to boss Doctors around and they would just assume as husband it was his right.

My oldest daughter was born 1982 in Lake Forest Hospital and it was a good place. Have you investigated Condell Hospital in Libertyville? All I know about it is one outstanding surgeon who is on staff. What about Lutheran General if it's not too far?

I echo the kind sentiments here, Chisue, and add my prayers and well wishes for you.

Kendrah has given very helpful and practical advice. I first learned the importance of comparing hospice agencies when my family was in need of services two years ago. The differences were staggering. The first local number I called took me to a central phone bank across the country who assured me we would have round the clock care, light cooking and housework. At the local interview they told me I had been misinformed while pressuring me to retain their services, practically putting the pen in my hand. It was a high-pressure sales pitch that I resented being subjected to. I declined, did due diligence and learned what Kendrah has warned against—this was a for-profit business model.

I then interviewed 3 truly local non-profit hospice agencies and settled on a Catholic non-profit (though they welcome those of no or all faiths) because they had 2 beds at a nearby hospital and a newly built facility, both of which could be used for respite care or if the situation became too difficult at home. The agencies also varied in offerings such as dog therapy, music, art... The nurses were kind and compassionate and truly called to their work. If I'm honest, it was a beautiful experience and my father stayed in his own home, on his own terms.

I wish for you an experience that goes as well as it possibly can, peace, and comfort. Please keep us posted, and feel free to DM me if you'd like more information regarding my experience. xo

Chisue, best wishes for what you’re going through. You’ve had very helpful info above. I would also ask your oncologist for palliative care recommendations then you can decide on one. Are you only on Kyprolis or plus other ancillaries? Hope you’ll beat the odds to slow the progression for many more months and possibly years with it, and have ample time to transition to home hospice care when the time comes. My Mother had home hospice care during her last 12 days of life. That was what she and us wanted.

Thank you all. ityMeans a lot to this only child with only child DH and only DS. I last delt (badly) with DM's death from leukemia in 1978 -- no hospice then. She was 73.

I hope to improve as this Kyprolis takes hold -- three weeks on (Fridays); one week off.

Right now I'm weak with diarrhea (imodium helps) and general debility. R and L ribs cracked; L glute strain; lower spine compressed. No appetite.

Had to cancel person from Lightways Hospice this afternoon. Later. Concerned that this formerly voluntary group in Joliet is now spread far and wide -- has connected with Northwestern Lake Forest.

Have not searched for other groups yet.

I made Horizon Hospice one of our charities after my DM's death, partly because they were the only place helping AIDS patients. (Remember that shameful part of our history?)

I'm going to break here because my computer tends to lose copy,

I have concerns about 'a good fit'. Currently I have no one person who is 'in charge' of my case at the hospital. I need infussion arrival times changed to be after 9 a.m. if they expect me to get there on time. There's the Oncology Doctor and three or four Nurse Praon't be ctitioners under him. There's a Cancer Center Pain Team. I don't see anyone coordinating things. Who adjusts meds and keeps me supplied? Are these things a hospice nurse would handle? Where is my Primary Doctor in all this?

I hope things will level out creating a temporary pace for getting organized. I may even find something I can eat. Speaking of which...I can't be cooking right now. DH doesn't cook. Who does that?

I don't anticipate financial poblems, but what does Medicare cover? Question for Social Work?

There is a lovely retirement home in Lake Forest that I can research, but that would not be 'in home'. Not sure 'home' won't be too much kerfuffle wthe people in and out.

As you can see there's more I don't know than I do!

I'm sorry to hear of your situation.

I'm also an only child with a husband who's an only, and I also only have one child - who will have no children. It's hard to think of the things you're confronting with that added onto the stress of your health.

I wish you grace and peace.

I had a friend with no family who moved to an assisted living facility. They had staff that arranged for her medical needs and also arranged for hospice to come in when the time came that they were needed.

Currently I have no one person who is 'in charge' of my case at the hospital. I need infussion arrival times changed to be after 9 a.m. if they expect me to get there on time. There's the Oncology Doctor and three or four Nurse Praon't be ctitioners under him. There's a Cancer Center Pain Team. I don't see anyone coordinating things. Who adjusts meds and keeps me supplied? Are these things a hospice nurse would handle?

A lots of your concerns here and more would be coordinated by good palliative care team that includes NP and social workers, etc. who act as a bridge between you and your oncologist during your treatment with Kyprolis. So I would get on palliative care asap. In the meantime call up the NP at the oncologist office to ask for help finding a social service/volunteer group that can help with your daily basic needs while you transition into palliative care.

Dear Chisue

I dont know you and I do not participate a lot on this forum. However, I am beyond touched by your sharing this very trajic personal experience. I am so very sorry to hear this sad news. You must be a strong person, to share this information in a very open, coherent and honest manner. You have received a lot of good information. It, is admirable that you can even deal or navigate through a very complex illness let alone a bureaucratic quagmire. Our system up north is very different than in the USA. However, the social worker’s role would be the same. It is their role to coordinate with service agencies and professionals. They, act as a liaison and coordinate between patient and all services and agencies. They can be your ’go to person’ your voice, if you will. aHopefully, you will be assigned a worker through either the hospital, hospice or palliative team. Take care of yourself, you are examplary!

Chisue, do you have a primary whom you can ask for a social worker to coordinate everything for you?

Chisue, I have always enjoyed your contributions to discussions here. .I am sorry you have these health problems. I don't tend to post here, but I have been coming here since the early1990s using the name Sheilajoyce. I live in Southern California and used Hospice for the past 18 months for my husband who had vascular dementia and congestive heart failure. Our local hospital sent an Hospice rep to talk to me when he came home from rehab, but I chose the Hospice group that my doctor recommended so that he would continue to be our physician of record. Within a few days of returning home, DH could no longer manage the stairs to our bedroom. I had been hiring care givers since rehab because he would refuse to use the walker or wheelchair and then fall.

Care givers are not provided by insurance or Hospice. You hire those people yourself. I used an agency that the case worker at rehab suggested and really liked the ones I hired regularly. The aid workers changed diapers and clothing, did his laundry and changed his sheets, twin extra long for the hospital bed, and fed him. I preferred to cook his meals, supplementing with the Ensure.

.Medicare covered all the costs providing a hospital bed, bed table, wheelchair, walker, special mattress pad to prevent bed sores, shower stool, commode, oxygen, all prescriptions, diapers, Ensure, bed pads, skin care and otc meds too. Some of those things you have to ask for, so speak up right away. Hospice gave me a kit of emergency medications to keep in the refrigerator, including morphine. A nurse came weekly, and a bath lady came three times a week to give showers or sponge baths.

I hope this information is helpful.