Tell me your hospice story...

My mother was on palliative care for about a year before my brother, her POA, finally assented to Hospice. She was eligible for about a year before she died.

I would NEVER have been able to work, care for my family, my home and myself AND provided 24/7 to my very fragile mother. She needed MEDICAL care (oxygen, freqent checks of BP, breathing and skin checks, as well as management of her mental state). She was well cared for in the NH and had social interaction with aides, volunteers and chaplaincy.

Is your mother's money (SS, pension) being used to hire outside help?

I just walked through this a couple of months ago. My father had end stage congestive heart failure for a long time and after a failed rehab attempt he chose to come home on hospice care. His cardiologist had no more to offer and recommended this option. My dad was very tired of this life, mentally fine but so physically frail and exhausted, he’d truly had enough. When he first came home and started on hospice he rallied, told us that he’d be fine, would regain walking, would be back driving, and was talking about Christmas. Other than bringing supplies, hospice didn’t have much to do. This was short lived. After about 10-12 days he told me he was feeling the fluid building up again. It was a quick decline after that and hospice kicked in a lot more. Please know you can rely on your hospice nurses for solid advice, they know end of life signs well, they know when it’s time for increasing meds for comfort, they know lots of info on what is and isn’t appropriate in terms of care. My dad’s sweet helper was trying so hard to feed him, thinking if he’d eat he’d feel better, it was the hospice nurse who kindly let her know that food wasn’t important anymore and could in fact be dangerous. Once my dad couldn’t get up anymore, and didn’t eat anymore, he passed within five days. He last spoke to us one time the day before he died. The hospice nurse saw him the evening before he died the next day and told me “you need to know that in many ways he’s already gone, there are just some parts of his body that haven’t caught up to knowing that” Her words were very true, he wasn’t the same, wasn’t “there” anymore. I relate that to say, though we all think it’s so important to be there at the moment of passing, it’s often true that by that point our loved ones are in so many ways long gone. Don’t get hung up on needing to be there for the moment, use your precious time instead for when she’s more alert. This hospice time can be a short or long journey, you’ll need balance to endure it. Know you can’t do it all, doing what you can is good enough, your mom will know that. There’s no need for her to suffer, that’s what hospice is good at, finding the path to a peaceful life end. She should be comfortable, my dad was thanks to the advice I received. I did call hospice often to get guidance, they were always kind to me and I hope your experience will be likewise. I wish you peace going through this, I feel privileged to have done it, despite how hard it was, and I hope you’ll find the same

I think that when you speak to yourself you should speak in terms of "grief" and not "guilt". Guilt is for evil felons who do evil and then inexplicably want forgiveness. Grief is for those undergoing great loss of someone much loved, and doing the best their can with a very full plate. Guilt suggests that there can be some forgiveness that can change things. Grief understands that we sustain terrible losses and must go on for the sake of ourselves, and all we love.
I know that Hospice will have told you their mission, and your doctor will have explained what hospice is. It is now recognized that your Mom is dying, and that this is not a matter of if, but more a matter of when. That there will not now be any hope of cure, but there will be concentrating on the quality of life, on pain control, on prevention of air hunger.
My own brother died very quickly after hospice came. He was brought home from the hospital to die after suffering, at 85, a bout of cellulitis that went systemic in the blood. He was septic and antibiotics were not only not touching the infection but causing horrific diarrhea. He begged to be left alone and to go "home" to die. Hospice interviewed in hospital and he went home with their care to his beautiful rooms at his assisted living with the support of the workers there and hospice, in covid times. He was heavily medicated because of pain, and distress, and the level of medication needed for comfort almost certainly made death less drawn out by a week or so, but was a great, great mercy for him. He was kept very comfortable. His main nurse could communicate with him through hand squeeze and he would squeeze to indicate he heard him. Other than that he was kept below the level of dreams and distress and air hunger with sub- lingual morphine. He died and I will tell you for me it was a relief in many senses, not to have to suffer for him, watch him suffer, know there was no way out. I thank all the powers that be for hospice. Basically that was my experience. Many others have hospice support and patients pull right on out and live. I would say, with your Mom's awful conditions that isn't something to be hoped for.
You are doing your best. I am so relieved that your Mom has hospice to help her, and to help you. Celebrate her long life, not her lingering death. When you let go of the severity of your own loss you will find she never leaves you. She will always be with you in your heart and soul. Wishing you both the best and safe journey.

Hospice is a team approach offering a variety of services of which the only required service is nursing. Please reach out and talk with their team to see what is available to support your Mother, yourself and your children. You may be surprised how one simple decision (hospice) can help. My one suggestion for hospice is the earlier they are involved the better for the entire family. I have been a hospice nurse in the past and recently lost a parent on hospice. Making the call to hospice for my father was very difficult. Appears you are doing all that you can for your family, let others help in ways they can. My thoughts and prayers to you and your family.

Definitely have a conversation with your hospice company, and if you don't feel they're being receptive to your concerns and needs, get another company.

I fired the first hospice company we had for my dad, and he was only on hospice for a little over two weeks. The first company seemed OK at first, but they weren't returning calls for 24 hours. When I asked the social worker about what sort of support they give the family and was told, "This is not about you," I was done. I fired them on the spot, hired another company, and to the first company's credit, they coordinated with the new one to trade out all the equipment at the same time so my dad would be the least disrupted.

The new company was incredible, and the day I called and said, "I can't do this anymore," they were there within an hour and didn't leave until he died the next day. I'd been caring for him and my mother who has dementia for six weeks, and I just hit the wall head-on.

My husband was under hospice care in the home for 22 months and like your mom was at deaths door many times, before the end finally came(yesterday). His hospice agency while they've been around quite a while, certainly have room for growth and improvement. The only reason I didn't switch early on was because they are the only hospice agency in our city and the next one, was around 35 minutes from where we live, and in case my husband ever needed to go to their facility, I didn't want to drive back and forth that far, so I stuck with them. It's my belief that hospice probably does a really good job with those patients that die fairly early in their stay with them. I just don't believe they are equipped to deal with someone like my husband, that lived for 22 months under their care. I had to be on them ALL the time, to make sure my husband was receiving the care that he deserved. I'm sure it got to the point that they cringed when they saw that it was me calling again, but I didn't care, as I was going to do everything in my power to make sure he was taken care of(little of that that they actually did). Because as you already know, you and your family are really the full-time caregivers. Hospice offers very little in the big scheme of things.
And sadly in my case, because my husband wanted to die at home, there was even less that they could offer, as I was told that only in their facility could they give him the proper medications to sedate him and relieve him of his incredible pain, so my husband suffered greatly in pain, and then came the agitation, and in his 6 weeks of his dying process, he actually had only one day where he seemed peaceful, other than when he actually died. None of the medications they gave me to give him in the home seemed to work for him. And I was left to deal with all that by myself, as a nurse only came once day(in the last 3 weeks of his life) and that was usually only to change out his pain pump. In fact there was one day last week that my husband was in what hospice calls "crisis", and his nurse was here, and she didn't want to leave me with him by myself, so she called her office to see if someone else could see her next patient for her, and was told no, she would have to leave to see her next patient. She felt bad, but had no choice. So make sure that you are pleased with the agency you have and make sure you keep on them, to make sure your mom gets the help she deserves. God bless.

Earlier this year, my mom had been going to ER several times before I finally told the case manager "This is going to keep going, and she's only getting worse, and something needs to be done" They suggested that she was a candidate for Hospice. I agreed.

The severity of her CHF, was getting worse , but she refused to believe anything was wrong with her, until around May. Four trips to the ER already in 3 months, due to inability to breath (fluid collecting in the lungs). She was bedridden 24/7 at this point, She refused to take meds because 'they were too expensive'. That's when I pleaded with the case manager - 'please - do something . .hospice . . . something' I had no legal control (tried for a year though) My mom accepted Hospice because she could stay home and Medicare took care of the costs.

While all this is happening, I'm back home and afraid to visit because of Covid. She had rotating caregivers 24/7.

Hospice was in place for a few weeks before she died. I had extreme difficulty communicating with her on the phone, but could still get a raspy 'hello' and a few other words. One day a caregiver called me and told me my mom "keeps calling out your name". That I knew, was my que to drop everything and go visit her - Covid or no-Covid, and I knew it would be for the last time.

Seeing her just lie in bed, trouble breathing, uncomfortable with anxiety. All I could do is sit by her side, ramble on about a few things - show her my latest pictures of the kitties, my husband, the house . I even played a few songs for her on the piano. I held her hand and had the 'mother daughter talk'. I told her I loved her no matter what - no matter what our disagreements were, I was still her daughter. When I had to leave, I held her hand, kissed her on the forehead, and told her "after I leave, you can stop pretending you're sick and get up again and boss the caregivers around again (wink wink to the caregivers). She nodded and squeezed my hand , I said 'I love you' again. I managed to get a raspy broken "I love you" back from her.

Mind you, I never remember her ever telling me 'I love you' to me. She was that selfish narcissistic kinda mother, who really didn't know how to love me. I don't think she really liked me my whole life. But thats another book.

As I walked out the door I told the caregivers to call me when they know the moment she's gone. We all knew she was on her last hours.

I got in the car, and the tears came. And I prayed for GOD to take her back sooner rather than later. I also expected her to pass away in her home - which is what she wanted.

Alas, I get a call the next evening from paramedics - to rush her to the Hospital. I was angry that this had to happen. That night I had a long talk with the ER doc. He said that they did the right thing to bring her in. She had no DNR, and I asked the doctor to make sure she is comfortable, but do not preform CPR if her heart should fail. It would only cause more suffering. He agreed. They intubated her that night and of course, I didn't sleep very well that night - in fact I cried much of the night as she worsened over night. The removed the tubes early in the morning and administered the heavy drugs.

She didn't get to die in her home.

That's my Hospice story.

My husband was on Hospice for 4 months before he died. It involved a Hospice nurse making 2 visits a week to check vitals and refill medicines. We sometimes had an aide come another time or two a week but we did not always want or need her visit. She would have helped my husband shower, so he called her the "scrub lady," but he declined her help and managed to shower himself until his last few days.

I was grateful for the nurse's input and supervision and for the Hospice publications which helped me understand what to expect. I was disappointed and scared not to have any hands-on help during the last few days or hours of my husband's life. The protocol was to call the Hospice switchboard if things became unmanageable and perhaps they would call back several hours later. It took me several months to get over the trauma of those days.

If I am ever a Hospice patient myself in my last days and hours, I would advise my family to place me in a Hospice facility and let professionals deal with the "active dying.". They do not need to experience the fear and helplessness I felt.

Listen, all these feelings you're having are normal. We don't ever want to lose a loved one, or worse yet, watch them die in pain or discomfort. What we want to do is to play God and to prevent them from dying to begin with, which is impossible. Then, when we realize that's not possible, we want to then prevent any pain from be suffered, and for them to die on OUR terms, on OUR schedule, and according to OUR wishes. Needless to say, that's not possible either. The best thing to do is exactly what you're doing, and to let go and let God when you can do nothing else.

Keep in mind that oftentimes loved ones do NOT want us to witness their actual passing, so they do so when we are not around. If your mom passes while you're at work, or while you're sleeping, keep in mind that was the INTENT all along. Nothing you could have done to change it, either. Oh, people will say 'hogwash', humans have no control over such things. To that I say hogwash. Life is eternal and death is only the portal from one level of existence to another. Once her transition is complete, you will feel relief, as I did when my dad passed, because she'll be at peace, finally, and out of pain & whole once again. When I read the eulogy at my dad's funeral, I rejoiced in the fact that I knew he was dancing with his siblings as I spoke, able to jump for joy once again instead of being riddled with brain tumors and a wheelchair. THAT is what you need to keep in mind.

My father had hospice for 19 days before he passed. I am happy I made the decision to bring them on board to the ALF where he lived with my mother (who's still alive 5 years later at almost 94). They prevented him from suffering and from getting agitated during the transition period, so he was able to do so with ease and rather quietly, all things considered. For that I will be forever grateful to the team at hospice. The chaplain was also quite wonderful; he married my son and his wife in front of dad's bed in their apartment. My son knew my father wouldn't be able to make it to his real wedding the following month, so he pushed up the ceremony and had it in dad's room on Father's Day!! My father was semi-comatose for days prior to the wedding. As SOON as the chaplain stood up and the bride & groom walked down the 'aisle', my father opened his eyes and a wide grin split his face! Honest to God. He stayed awake for the entire ceremony, was able to kiss my son and his new wife, and to tell them he loved them, and they were able to have those last few moments together. Soon afterward, he closed his eyes once again and passed away 12 hours later.

Wishing you all the best of luck with this difficult situation, my friend, and sending you a hug and a prayer for peace.

My brother had excellent care in hospice! His social worker was fantastic that comforted him and our family. The nurses were angels, answered all of my questions and kept my brother comfortable until the end. The clergy prayed with us.

In the end he was in a wonderful end of life facility. I thanked them for caring so much for sacrificing day after day to care for their patients. I saw them give exceptional care to everyone who walked through the doors.

The nurses touched my heart the deepest. You see, I had a complicated relationship with my brother which I don’t care to share the specific details about any longer.

It would only make me sad to relive and I am no longer held hostage by my past relationship with him. I fully realize now that due to pain that he endured in his life it caused him to become a broken man.

All of us have our ups and downs with family members. At one point I wasn’t even sure that I could forgive my brother but now I am finally at peace.

The relationship wasn’t all bad. In fact, deep down in our hearts we shared enormous love for each other with good memories and not so good. I choose to remember the best parts of the relationship. I am now able to let go of past hurts.

I owe so much to the hospice nurses who are truly angels in my opinion. They brought me peace of mind that I did not think was possible.

Three of the hospice nurses came to me and told me that my brother had expressed deep sorrow and remorse to them for hurting me.

My first thought was, why couldn’t he tell me himself, then I realized that it was simply to painful for him to talk about it to me.

The nurses spoke to me about people not having to die with shame. I broke down and cried.

It simply didn’t matter anymore that he told them that he was sorry instead of me. I was able to throw my pride out of the window and completely forgave him.

What a wonderful gift these incredible nurses gave not just to my brother but to me. I will always be grateful.

They expected nothing in return from me but after my brother died I asked the receptionist what I could give them as a token of my appreciation for their kindness and special care.

The receptionist was lovely. She gave me an excellent suggestion. She told me that often the nurses ordered food in because they didn’t have time to eat out and suggested restaurant gift cards. She gave me the names of their favorite spots to eat and I sent flowers for the other staff and the gift cards to the nurses to enjoy a few meals.

We take so much for granted in life and I bet if we walked in the shoes of a hospice nurse we would see things from a whole different perspective.

My mom is now being cared for by hospice in my brother’s home and I have no doubt that she will receive excellent care.

You say it's not up to you, but it is up to you... God will take care of her later. It's up to you to care for her, but not forever. You're already an "emotional wreck", "feel broken" and "exhausted". Your financial struggle doesn't lessen your stress either. I could say, "been there, done that", but I haven't been there. Each of our caregiving experiences is different than someone else's. I wish my wife could have lived out her life at home, but I had long reached my capacity for caregiving. Have you?

When I placed her in an MC facility, she immediately was placed under hospice care. She was in their care for 15 months when she became comatose and died 14 days later. During that 14 days, hospice was there at her bedside 24/7. Although she was completely oblivious to her surroundings, the hospice nurse would brush her hair, massage her legs and arms, keep her dry, move her so she wouldn't develop any sores and even read to her. What more could I ask. The beautiful thing was that she died peacefully and pain free.

That's my hospice experience and I'm grateful for it.

I had the most AWESOME experience with Hospice.
I got the help I needed
I got the supplies I needed
I got the support that I needed
I got the equipment I needed
I got the education and emotional support I needed
...wow this sounds like it is all about ME!
My Husband got...
Someone to help shower him a few days a week
A Nurse that would come in once a week to check on him
He got a wife that was more equipped to handle his decline
He got a wife that had less stress because I had what I needed to care for him
He had another set of eyes that might spot a problem before I might.
I honestly think he had better care from "our" Hospice Team than he had from most of the doctors that has seen him before Hospice.

I am currently a volunteer for the same Hospice. Just my way to give back for all the help and support they gave me. (I started volunteering while he was on Hospice and have been a volunteer now for 6 years. )

I read so many great stories here about Hospice, but I've also heard of hospice groups who bring supplies and drop them off and then a nurse comes by maybe once a week and that is IT. The family is to do all the bathing and caring for the patient. I guess it depends on the particular hospice group that is chosen.

You can group Hospice into 2 categories.
For Profit
Not for Profit.
The one I chose happened to be a Not for Profit Hospice.
I am not sure if that is what made all the difference or not.
But just like any service that you are going to research you should "interview" more than 1.
Medicare has strict guidelines on how often a Nurse visits a patient.
Other "services" may or may not be required and the more services that your Hospice offers the more of a benefit to the family and the patient.
The Hospice "Team" includes the Patient, family and that can be whoever the patient says is family. The Nurse, Social Worker, Chaplain, CNA, doctor, and any other service art therapy, music therapy, volunteers. The team must meet on a routine basis and discuss the patient, any changes and care plan. I believe that the meetings and discussions are one of the reasons that I feel that the care is better than if you were still with your original doctor.

She is on hospice. The goal is to make her comfortable and out of pain and reduce her anxiety. She is obviously in a facility. She will not suffer. Get her hospice chaplain to help her with letting The Lord take her thru each day. He can help you do the same. When you visit talk about all the past good regarding her and the family. The posative memories along with The Lord takes you and your mother thru every day. God will take her home on his time. If she wants to go He will do it in His Time. Your coming loss of your mother is also what the Hospice chaplain or your pastor can help you with "now".

My mom was switched over to home hospice care this past Feb, and for the past 7 months she's been doing much better. I had a few issues with the nurse that I had to work through but the rest of the team has been great. I initially struggled with the hospice decision (and posted here about it) but at the end of the day I know it was the best decision I could have ever made.

Hope this helps and prayers for you!

Hospice Story - denied.

I have two hospice stories, ten years apart.

In Jan. 2010, my widowed mil came to stay with us as she recovered from a stroke. At the time, I only knew of one home health care agency, a faith-based agency, and we signed up with them for home health care. OT, PT, nurse and nurse's aide visits all occurred in our home. She was progressing great and in April I allowed her more freedom to dress and care for herself with the expectation of a weekend at her home with her other son. She fell while dressing, ended up in the hospital and then a NH for ten days. Horrible experience of her meds being dispensed wrong, or not at all, or other meds given that she was not supposed to have being given. We got her back home and she tried real hard for a few weeks but then on a doctor visit she said, "I'm tired, I'm done with trying to get better, I don't want any more exercises." He mentioned hospice to her and she said, "No, that's for people who are dying. I'm not dying." He said that if she chose to stop all the things she's been doing to get better, then she most certainly was choosing dying. She agreed then to hospice. The home health agency also offered hospice care so the transition to hospice was relatively easy except for the fact that a whole new team came in. She was on hospice for three months before passing. She loved her nurses (who came every other day) and her aide (who came the other every other days) and we felt very supported. My mil passed peacefully in our home. It was the perfect hospice experience.

Nine years later, my father was failing to adequately care for mom and their pcp wanted both of them to go to assisted living "or else" he was going to ask the state to step in and remove mom from the home. We asked about hospice and he was agreeable to that. We used a hospice agency that was not faith-based. They were not as hands-on. My sister and I are hours away and did our best to be there for the intake interview and social worker visits, usually by speaker phone. I never felt my parents were honest with nurse when she came -- they hid mom's falls (unless there were visible injuries), my dad did not mention things like her refusing her meds or the amount of food she ate / didn't eat, they minimized everything. And the nurses were never consistent with day and time and even who came. So I never felt the nurses ever really got to know her. When she began to have a sudden personality change, this is when this agency dropped the ball big time. They should have considered a UTI. I should have been more aggressive and demanded that they to a culture for UTI since my father was unwilling to "tell them how to do their job." Any way, she did have a UTI that progressed way too far for too long and she ended up her last two months as a totally different person, had to go to a mental health facility, then a hospital, and finally to a NH where she died. The last day my father saw my mother at home before seeing her again several weeks later at the NH, she was able to dress and feed herself, prepare her own food if it was simple, move around the house on her own, but she was also at that point totally out of her mind. When he awoke to find her with a butcher knife poised above his chest, that is when he called the police, sent her to the ER, and told them that nope, after two previous visits to the ER and nothing was done for her, he was not picking her up this time. That's when she ended up in the mental health facility, the hospital and then the NH. When he saw her again a month later, she was bedridden, couldn't eat, couldn't communicate, not totally aware of us, and looked like she'd lost thirty pounds. He saw her and said, "My God, what happened to her?" She died there a few days later.

So -- two very different experiences for me. One was wonderful and the other ended horribly. I really think it depends on the agency as well as your level of involvement.

We never saw our "Home Hospice" nurses...it was just like him staying home and suffering. He didn't get real treatment until he was suggested to go to Hospice itself. there was where they made him comfortable finally. 7 days later he died. the nurse at our house showed up only once...they gave my mother meds to give him, but he had a habit of holding meds in his mouth and not swallowing...Yeah, that is what my mother wanted too, but ultimately it was determined he was better off at hospice...and he was...he was suffering, and we couldn't let that happen any longer.

My dad started home hospice care on a Tuesday and he passed on Thursday evening. I so wish it was started earlier and he was discharged earlier from the hospital. My brief experience with hospice was pleasant and my dad was kept comfortable. He also had heart failure and kidney failure. His last day was filled with family and friends coming to visit. He was 85. I feel so bad your plate is extremely full and I know you are torn about where to be. You have to work and take care of your children. Try to focus in one day at a time. This is your mother's journey and she may want to leave at a time when you are there. She may feel its easier for you. Hospice will take good care of her and not allow her to suffer. They know when the last hours are near and will tell you. Love your little boys and take care of yourself. This is all so exhausting.

Hospice can or can not be the end. People do leave hospice services alive. Our hospice experiences were very good. The first , before Covid was 3 days. My stepfather was unresponsive so it was more keeping him comfortable but allowed him and my mother the relative comfort of him passing at home with family.
my mother’s was during Covid, we brought her to my daughter’s home to allow her to pass with family. It went smoothly although a little more difficult due to limitations from the pandemic. She had severe dementia and was pretty out of it but conscious until the last day. She was in hospice a week. She would have hated being like she was so in both situations IMO it was better to see them pass comfortably than extend not really “life “, just existence. IMO you need to think what’s best for them , not what others want. It’s been 5 months and her interment is today. Waiting for that ( due to brother in law’s poor health) was a huge mistake. It’s just ripping a bandage off a partially healed wound. If she passes have the funeral ASAP.
i do want to add, my parents were well off financially and had the means to afford 24/7 home health aides. That is not included in Medicare covered hospice . Our covered hospice included a nurse who visited every couple days (or as needed , may be less in your case since my mom was actively dying) and an aide iir 3 times a week for one hour. We paid almost $5k for home health aides for the week she was in hospice.

My dad 87 was diagnosed with bile duct cancer December-he had a surgery option but primary was not recommending he wanted it but I steered him clear which I now have some guilt about- we were in the process of meeting with a specialist when covid hit and an infection on his spine hit the same week. Many visitors to house- then hospital- rehab - home - hospital- home hospital home - back to hospital I thought it was over as he had stopped eating and taking meds before the last visit, drs recommending hospice- I agree as they tell me he doesn't have long to go. That was July 1 he got better I don't know what that means and is now being transferred to sub-acute rehab. he has been bed bound for months and I am hoping that at the very least he can stand with help and use the commode. The hospice staff has been terrific I just had an issue with the dr - I had to talk to them about what is next, he said it was remarkable how he has recovered however didn't call me to talk about any other options or what we should be doing- I am paying for room and board at hospice thinking it was a short term situation I would have preferred him at home and he wanted to go home but he lives with my mother who is 85 and I wasn't sure she would be able to handle it even with help. The spring with his downward spiral was grueling enough but I had hope. Today he gets transferred and I am hoping they can help him get some strength back but an fearful he won't want to participate and we won't really be able to see him, hospice had no restrictions and we went every day and the rehab has many restrictions. The whole thing has been confusing and emotionally draining- I want to do right by him I adore the man but feel as with every decision I am questioning it. I don't want him to suffer yet I don't want to give up on him at all. What has been in credibly difficult is the roller coaster of having hope for him, losing it having hope again and not really having any answers his downward spiral was so fast without any help from medicine.

My experience with hospice care was wonderful. We were blessed with an organization that was so caring and compassionate & were not only concerned with the care of my Mom, but also care for my sister and I. Mom suffered from COPD, Lewy Body Dementia, PAD, and she had several other issues. She had become so frail and weak that she could no longer walk on her own, get to the bathroom, and ate very little. She also was in and out of lucidity. One minute she was with us, the next, she was a little girl. I was the caregiver, while my sister worked. Caring for her had become more difficult and intense and my sister and I realized that we needed professional help. She entered home hospice care on November 12th of last year and passed sometime in her sleep on November 19th. We had an excellent hospice nurse who we could call any time, day or night. On the morning of the 19th, we called our nurse and she came right over, She handled making the calls to emergency services & kind of held our hands. The Chaplain called us to counsel us and they still call us every couple of months just to check in. I still keep in touch with our nurse...she checks in on us via text. It was the best decision we every made because for that week, we were able to keep her comfortable and at home, where she wanted to be.

I'm so sorry for your struggle. My mom went into Home Hospice in November 2010 with terminal uterine cancer after a 3 year fight. She died 3 months later.
My home hospice experience was awful. She lived 9 miles from the hospice organization associated with her hospital. It was a struggle getting someone to the house beyond the allotted hrs.
Her last hours were on a Sunday night and while I spent many conversations on the phone with them at 4am, they said they would not come until the new shift at 8am (and the hospice worker arrived at 9am hours after she passed.) My mother had a fever of 110 & died in excruciating pain. Hospice insisted I could not give her more morphine and suggest I rub the headache medicine, like Tiger Balm, on her forehead.
Having been through it, I tell all my friends that I would have no problem (now after living thru the ordeal) being the Angel of Death for anyone that needs it. If I had it to do over, I would have given her all the pain killer I had so she could pass pain-free. When the hospice aid came in the morning after she passed, she had me empty every bit of morphine into coffee grounds. My mom should not have died in pain.
Hospice was paid $3500 dollars from Medicare for that final day to basically fail her in her last moments. Weeks later, I got my local state congressman to look onto it how they bilked Medicare with S#itty service. Nothing really came of it, but the state rattled the hospice's cage enough that I hope they improve their Standard Operating Procedures.
I too worked, but I paid a certified CNA friend out of my pocket to help me everyday too. About $20 an hour for a few hrs a week. (Sell some stuff on facebook marketplace and ask your friends if they know a CNA and get yourself some more support if your hospice provides limited visits like mine did.) My friend came at 4am too when I was at my wits end that final night at no charge. I am forever grateful for her being with me those difficult hours.
God forbid your mother passes on a weekend after hrs. Give her all the pain meds she needs if this happens, in my opinion. My biggest regret is not doing that.
I know it's a long waiting game filled with guilt and anxiety. You can't avoid that, it just is what is. I forever looked for signs the end was near. Her fingernails changed the last week. I don't remember if they were more purplish or more white, but it was however google said. She had the "death rattle" the last 2 days. You'll know when you hear it, but they don't always have it.
Cherish whatever lucid moments she has and tell her all the things you love about her over and over everyday until she dies. Tell her thank you for all the things your grateful for because it will make you both feel better. Take some time everyday for yourself in the meantime, even if it's just a 1/2 hour in a warm bath, or in your back yard, or in the dark before you sleep. Allow yourself to cry. This is hard and unfair. Get a babysitter or a friend or family to take your children someplace- even if it's a park, the back yard, or a fast food parking lot so they can be kids and laugh and that thought will make you happier. If you belong to a church or the PTA start telling people you need help. People want to help, you just need to vocalize what you need. (Maybe a home cooked meal?)
You are going to get through this. It sucks, for sure, but the 1 thing you can absolutely count on is that things will not stay the same EVER in life. So this too shall pass. Even if you are mad at God, start talking to him in your head, everyday, no matter if it's ranting, pleading, or being grateful. Maybe even start a journal and write all your crazy thoughts in a notebook and burn it when she dies- because you need an outlet to get your thoughts out of your head, but you do not need to keep those crazy thoughts.
As you say, you may get "the call" while you are at work. Let go of that guilt and try to be present in your work as much as possible. It is out of your control

My husband was on palliative care and due to brain tumor surgery no longer knew who I was
As time progressed I was getting very little sleep at night and the palliative care nurse suggested I transfer him to Hospice Care where he could have 5 days of respite each month and give me a break I said he wasn’t ready for hospice and she said it didn’t matter he would be evaluated every 3 months
So I agreed but the place he was admitted to that had an opening was not close to home and the one that was had a long waiting list
He went to the available facility, the last words he said to me as he was leaving were” aren’t you coming with me?” 😞
I tried to reach facility to speak with Dr the next day finally received a call 48 hours later that they needed to medicate him and if he didn’t respond they have to transfer him to Hospice Care from Respite
long story short when I received the records they continued to medicate him he never did wake up and with out fluids and nourishment he died on day 6
The worst decision of my life !!!!!!
At home he was confused but he was walking talking eating showering with supervision and was continent
He was to be home for his Birthday Celebration but died at Hospice House the day after his Birthday 😥

My mother has been in hospice for almost 2 years. She has advanced dementia and it was getting worse, but since we put her on hospice-type care where she doesn't have to go to doctor appointments or the hospital, her physical condition has stabilized. Ask hospice for all of the help that you can get. You need it as a "sandwich" caregiver who also has other responsibilities. Do the best you can, given all of your responsibilities. You also have your children to think of. You have to be there for them too. Don't beat yourself up about anything! Be kind to yourself and forgive yourself if you can't be a super woman and do everything.

Our family had a great experience with hospice. My uncle was on home hospice for 6-8 months, terminal cancer amongst other problems and it enabled him to enjoy his family, be a part of life all be it very different for him as he was a very active outdoor person all his life but still he was able to remain home and have his pain managed, my aunt getting the support she needed to care for him. When the pain became unmanageable at home and his needs became more than his wife could handle at home, even with the help he was moved to the Hospice facility where he was able to receive family and friends, sometimes even in the gardens with a wheelchair, until he passed about a month later. I can’t imagine how his passing could have been easier or more loving for all involved and that was due to the wonderful Hospice care and personnel. That’s all about the Hospice organization of course and the providers they draw and keep, it’s all about the people, not all outfits are the same and not all areas have great choices so it’s impossible to say good or bad across the board. But it is important to know there are good and bad providers just like everything else so doing your due diligence about the provider you choose is key. Get referrals from people and caregivers, doctors, nurses you trust, ask the hard questions and listen to the answers you are interviewing them and can decide they don’t work for you. Interview more than one Hospice organization and if you only have one in your area still interview and research them as thoroughly as possible but once you choose the people you like don’t fight it, let them do what they do and you just enjoy the time you have with your loved one, once their comfort is taken care of this time in many ways is harder on and more important for you. Like your wedding, don’t miss it 💕

I made the biggest mistake of my life when I decided to take my dad to hospice. He was admitted cause they claimed there was nothing more they could do unless I allowed them to operate on him for what only God knows. He was 86 and they claimed his heart was weaker than when he first came to the hospital. They LIED to me, they were supposed to feed him and they did not. I left my dad joking around with the nurses in high spirits.

Next day I went to visit, he was asleep...I sat with him for five hours and no one told me they had sedated him. Every time I went to visit he was asleep...so I asked the nurse why is he always asleep and won't wake up when I call his name?

She said we medicate him as needed. What? As needed, he was not in any pain, so why. I pressed her when did you first sedate him...answer as needed...I am speaking English...when was the first time you sedated him? The first night he was admitted, sedated my father and starved him to death...taking away our ability to say goodbye properly...yes I am intelligent to know that he was dying...so let it happen naturally...they killed him before his time.

They even had me sign admission papers that once I reviewed it was not even for my father. They took away his ability to say goodbye...I was visiting him every day...an hour and half drive each way and sitting with him for hours not knowing they were killing him sooner than he needed to go.

So this is my second hospice experience. First one was a high school friend...and I was the only one who visited her every day and her hospice nurses did not care for her, they slept on the job when they were to be caring for her. The insurance company knowing she was dying and in pain, did not give a rat's a** about keeping her comfortable...she died being in a lot of pain...she was a registered nurse...she knew about her cancer, she got from working with chemotherapy drug...chemotherapy is a killer drug, which kills ALL cells in the body good and bad...so taking this drug...you will certainly die sooner than later.

I feel so guilty for allowing my emotions to make the decision to put him in hospice...if I knew they would kill him...I would have just kept him home...continue to care for him 24/7 like I was doing before. It was h***, feeding him through the feeding tube, changing and cleaning him up every 2 hours, but he would have had the opportunity of saying goodbye to loved ones!

I have sleepless nights of what it must have been for him...hearing my voice and not being able to answer me...hearing is the last thing to go. I cry every day and August 22, 2020 was one year since he was forced to die.
God help us in our hour of need!

The hospice nurses are wonderful. They were very kind to my mother and also kind to us...the daughters. I think of them often and how caring they were to our mother.

Lord Have Mercy