Tell me your hospice story...

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. )

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.

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.

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 am a self-employed, well educated, private caregiver. Senior's with Alzheimer's/Dementia. I love what I do, and most of my senior's end up in hospice. My husband was on Hospice for the last week of his life. I brought him home on a Saturday, for the next three days, I shared his time with his two children, his step-daughter - my child. Each had private time with their daddy. But on Tuesday, it became "our time." We shared everything we felt, thought, or dreamed about. On Wednesday evening, he said this words to me; "I should have married you when I first met you" - (we dated 10 years) and "I regret I have to leave you now." Even writing that brings tears - those were the last words he spoke. He went into a coma, and passed on Saturday morning. I was laying in his hospice bed with him, holding him, when he breathed his last. He's been gone 10 years, but his passing made me put the rest of my days to use. That's why I do what I do - in honor, admiration, respect, for all who are in the stituation of having hospice in their lives. I have great respect for all who are passing, for they do so with grace and dignity.

I just wanted to thank everyone for their kind words, advice and suggestions. I guess my original post was just a tired mama venting but your incredible stories have really helped me in more ways than one. Thank you again.

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

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 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.