Any suggestions for end of life care? We’re listening to hospice, but welcome any comments you might have based on experience.

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Any suggestions for end of life care? We’re listening to hospice, but welcome any comments you might have based on experience.

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We’re waiting with dad at home. I got hospice in yesterday, bed arrived and last night the terrible rattling started. I called hospice nurse and she confirmed what it was. Elevated the bed. Nurse came today and says anytime… hours to days. I’m swabbing mouth, keeping comfortable…he was agitated until about midnight. Had good vitals when nurse checked him out yesterday. Very fast decline. I have decided to anticipate anything. So, my family sat around him last night. I got a couple hours of sleep. Afraid to go to sleep. Should I hire someone to sit by him?

Care Decisions End of Life Hospice

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When it came to end-of-life discussions, I found this article helpful: https://montebellocares.com/end-of-life-decisions-mesothelioma-hospice-care/

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Reply to LeighH21

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So sorry for your loss Sunnygirl. I hope the plans for the funeral are going well and you are comforted by the prescence of friends and family.

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Reply to 97yroldmom

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@97yroldmom, thank you. Yes, there has been an outpouring of support and sympathy from family, friends, church and the community. It was a large turnout for the visitation and funeral with enormous support from so many. A constant stream of visitors to the home bringing food all week. Multiple family members took off work and stayed with us. All the work involved in the planning of the arrangements was worth it and it was exactly the way he wanted it. One if his favorite songs that I featured in his tribute cd is All Is Well With My Soul.

(3)

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I had hospice for my wife who stayed at home I would visit at least three times a week maybe more depending on how she was doing. I will say hospice care was as much for me as it was for her. At least I had someone to talk to.. my wife was asleep for about three days before she passed. Hospice came out the afternoon before she died.. The only downside was they vanished right after she died never to be seen again.

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Reply to Sample

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I had hospice for my wife who stayed at home I would visit at least three times a week maybe more depending on how she was doing. I will say hospice care was as much for me as it was for her. At least I had someone to talk to.. my wife was asleep for about three days before she passed. Hospice came out the afternoon before she died.. The only downside was they vanished right after she died never to be seen again.

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Reply to Sample

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Agree with everything. You are already doing everything you can for him. He probably won't know if you are with him or not so being there with him is more for your benefit. Do EVERYTHING you can to make sure he is comfortable. Some people do not recommend morphine but it does help with the breathing/death rattle as many people gasp for air at the end. When my husband died years ago, in home hospice was great. A nurse came by twice a week but was available basically on call. My uncle was in at hospice for several years, they would kick him out about the 8 month mark since he was still alive and there was not enough deterioration. Again the would just send a nurse once a week but would send someone once a week to help with bathing. Both times I was left an "emergency kit" (which included morphine) that could be used at the final stage if a person was too uncomfortable at the very end.

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Reply to mikeindc

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You're right about the morphine helping with easing a dying person. I know from experience that it makes you feel relaxed - that's one of the reasons people can get addicted to it.
Also, there is no way of knowing that a dying person cannot feel pain. It could be that they are unable to express how they feel, so I would rather give pain relief than risk them suffering.

I had a major reaction to morphine during surgery, so I'm not allowed it now. If I'm given morphine at the end, and it stops me breathing, then that would be a good outcome as far as I'm concerned. I don't know why people worry about morphine hastening death for a person who is actively dying - do they really want them to linger and suffer?

(2)

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Thank all of you for your condolences and kind words. My Dad was sleeping comfortably when he passed away. We were expecting it, but still…..I am glad I was there. And before last week I would never had said that. Never imagined me helping provide end of life care in the home. My niece is an EMT and she helped some during the day. I was awake most of the night beforehand and he was very noisy. That was distressing. I was assured he was not uncomfortable due to that. He laughed a loud multiple times, even though he didn’t wake up. I choose to believe he was talking with loved ones gone before.

I’m not sure how long before I really process it. Maybe after the whirlwind of activity subsides and funeral is over. It’s a lot more than you ever think.

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Reply to Sunnygirl1

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I can’t tell you what to do. But, I was awake by Daddy’s chair when I watched him take his last breath. I dozed off n on, but I believe an Angel woke me to be with him. My Mom always said it is a blessing to be with someone when they pass. She also says Have no regrets. I am so glad I was there for my Dad. It’s very sad but I felt I needed to be there. You just have to ask yourself, will I regret not being here when Dad passes? Some ppl would rather not. And that’s ok. Just ask yourself how YOU will feel if you’re not there. If you’re ok, call in backup family maybe to take turns staying. God bless.

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Reply to stressedmess

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Sunnygirl1: Prayers forthcoming for this most difficult time.

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Reply to Llamalover47

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I'm so sorry for your loss. I'm glad it wasn't a prolonged process for him or your family. You said he was happy when he was briefly awake. That's good. He was ready to go and I'm sure felt all the love around him.

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Reply to ShirleyDot

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Sunny, so sorry for your loss. Wishing you the comfort of memories of happier times, rest and peace

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Reply to Daughterof1930

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Sunnygirl1...I am sorry for your loss. 🙏

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Reply to Grandma1954

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You are an angel. Take all the support you can get! Let other family members take shifts but stay close for when the end comes. You are doing the best for your Dad in his final hours. God bless you all. Stay strong on this time of need for each other.

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Reply to LilieCou

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You and your family are beautiful, keeping him comfortable, sitting around him, is a blessing. Your father feels your family’s love and energy, though it may not appear to be, ‘he is more aware of you now than ever…, often when people are in this stage, they’re between here and the hereafter…’ Respectfully, the rattling that you hear his body being prepared for his soul to leave, he doesn’t have long. At some point his state will be down to minutes. If you feel that you need to hire someone to be with him, or if your family could take shifts, while you rest nearby…. Whatever your decision is good, you’re doing an honorable thing, being with him as best as you could at this stage of his life. God bless you/ family for being there.

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Reply to Wisdom7

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Be cautious. While most people feel hospice is intended to be a caring experience, it truly isn’t. There are certainly some that may be private and non-profit, however most are not for profit and run by local hospitals and their umbrella agencies. Hospice is paid by Medicare, whether or not they come out to your home, as they simply bill daily. Keep in mind the money making opportunity. Medicare allows people to be to be on hospice for years. I know i will receive a lot of replies explaining how terrific the experience was for some. My FIL literally decomposed in the hospital bed they brought to us. He developed Kennedy Sores (Kennedy Terminal Ulcers), on his lower back and sacrum. They expand quickly and form into a deep open wounds (down to the bone), in a day or so. Hospice will try to tell you your loved one isn’t in pain. Do not let them tell you that. Your person is rotting and they feel it. Repositioning etc does nothing (and the friends and family members are the ones doing this work). In addition, their heels and elbows will develop decubitus sores (down to the bone), your loved one feels that too, Hospice will give you the morphine to administer, oh and oxygen is not for the comfort of the ‘patient’ it’s to ease the mind of the family. A study in JAMA found no difference between oxygen administration and room air. When my FIL’s oxygen wasn’t working, the EMT’s told me this. and suggested i just use a fan h then i checked on the studies). I demanded the hospital send their palliative care doctor to our home, he came and my FIL was immediately removed to hospital hospice. Custom foam support was molded to his body from vioelestic foam for relief, while they medicated him. You (while at home) are expected to clean them, bathe them, and see and smell them. it’s the most undignified process for you and them, 70% are for profit businesses with; shorter visits, delays or omissions in delivering pain meds. rand Corporation Report indicates some hospice profit at 73%, MedPac notes many at 20%, Center for Economic Policy Research found for profit hospice report profit margins 3 x those of non profits.A New Yorker article highlights for profits make up over 70% of the hospice industry , Remember, Medicare’s per deium reimbursement incentivizes longer stays (at home) with hospice, with reduced nursing visits and direct care at minimums, Remember palliative care cannot assure you your loved one is not in pain. Assessment tools are limited, delirium and anxiety can mask the pain. Hospice has transformed from a small compassionate service into a multi billion dollar industry with strong profit incentives. It’s a steady payment system that brings in huge amounts of money with greatly diminished focus on patient care. If you go hospice insist in in hospital hospice care. Don’t let the nurses on Instagram fool you.

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Reply to Rrieger1

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Sunnygirl, May The Lord give you grieving mercies, comfort and peace during this difficult season in life.

Your Dad is at peace and smiling down on you with gratitude for ALL you did.

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Reply to Isthisrealyreal

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SunnyGirl...I'm sorry for your loss.

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Reply to Greeneyes60

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Unless your father is in pain, do not give him morphine. That will speed up the process. (Hospice is known to do that regardless of pain or not.) I would not allow it with my father. He was not in pain.
They do have a medicine that helps to relax the muscles, so they are not thrashing their limbs. (My father kept wanting to get out of bed...lol. Although he couldn't stand.) Helps with agitation as well.
It also relieves any concern about him falling out of bed.
My father had really good vitals until the day he passed (Feb 26th). Tough guy...he hung in there for a while. The new medicine helped relax him, and it helped those around him to rest if needed.

God bless you and your family. Your father would be proud knowing you are with him.

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Reply to Greeneyes60

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Update, My dad passed away the day after my last post. He was peaceful. We were expecting it, but it’s still heartbreaking.

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Reply to Sunnygirl1

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I’m so sorry for your loss. Last year I spent over a month taking care of my mom on hospice. It was a challenge and a reward at the same time. I’m glad your dad went quickly and please don’t take that the wrong way. I had to watch my mom suffer through a lot of her time because her husband would not allow us to give her anything to make her comfortable, nor would he assist in the caregiver portion. So my prayers are with you, and I’m thankful for you that you were there with him. Sending gentle hugs and prayers for you and your family.

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Hospice nurse says he’s halfway from Intermediate to Active. I’m not sure what that means, but she says he’s not in pain and we are doing a good job. I’m starting to wonder if we might need a hospice center. No volunteers so far. I had not planned a leave from my job.

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Reply to Sunnygirl1

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We found out too late in our area that using the hospice inpatient house was only available if you initially signed up with the agency who owned and managed the house. We’d gotten connected with a different agency, thus eliminating using the inpatient house. The agency we used did provide a list of independent workers who they knew to be good. I hired some, they set their own rates, and all were excellent. They were CNA’s looking for extra work. Sorry this is so hard, I remember it all too well. Wishing you rest and peace

(5)

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Your Hospice should have either Volunteers that have had Vigil Training and can be with you and your family with dad during this time.
Each Volunteer will take a 2 to 4 hour shift so that at no time will your dad be alone.
Some Hospice also have Staff that are trained to do the same and will be there for all of you. this may be called Peaceful Passing
In any case contact your Hospice and ask for Vigil Volunteer to be arranged.
(((hugs)))

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Reply to Grandma1954

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70% are for profit and do not have volunteers. Medicare gets paid daily, whether or not they visit the home, and basically there is no incentive for them to come out. If hospice is your choice, insist on in hospital hospice care, Medicare makes the miley and the family does the u bearable

(1)

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I was with my dad through home hospice. When it got close, the day before he died, the nurse told me I needed to know my dad was “already gone, his body just hasn’t quite gotten the message yet” It was so true. Please don’t worry about missing the actual moment, dying is a solo journey. Your dad knows your love and care. Use the good meds to keep him comfortable as guided by the hospice nurse. Ativan calmed my dad. We were also told the cough or rattled breathing is only hard for the family to hear, not bad for the person doing it. I did hire help, it was a godsend. I wish you much peace

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Reply to Daughterof1930

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I have to say I soooooo appreciate your information. I have heard many ways of healing the soul. But yours has to be the best I've heard in my 76 yrs young. I have helped many family and friends thru the dieing process as here in northern calif well lets just say hospice is not as compassionate as one would like. You made a few points I would like to borrow if thats OK. Again i really appreciate you thank you so much

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Thank you for that information. I’m staying on a loveseat near his hospital bed.
in the house. Plan to sleep though. The nearest hospice center is an hour’s drive and my mom has poor mobility….so, less stressful here I guess. I’ve said everything. Put lotion on his legs, arms, played nice music…….When he awakes for brief periods, he’s happy…so far.
I never thought I’d see such a fast decline.

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Reply to Sunnygirl1

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The death rattle, or Cheynne Stokes breathing, is distressing for only the caregivers to hear. Not for the dying patient as this rattled breathing causes them no discomfort. My mother was also making VERY loud hiccuping sounds during her end of life journey, which had me jumping out of my skin. Both of my parents began this type of breathing about 12 hours before they passed. Dying is a solitary process and you don't need to hire a sitter, imo. I believe their soul passes over before their body, and they're at perfect peace well before their body shuts down and the heart stops pumping.

I'm sorry you're going through this experience, it's difficult to say the least. God bless you and give you strength.

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Reply to lealonnie1

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If you are hearing what was once called the "death rattle" then the end is very near. It is not as bad as you imagine. It is a sort of thing where the epiglottis relaxed into the back of the throat and vibrates with inspiration, and especially with expiration. You may see some mottling and cooling of the lower limbs. Speak with hospice and they will tell you what to watch for. It is very unusual at this point, if well medicated, for the elder to attempt to come back to you. Truly he is on another journey that is his own. I am so sorry for your coming loss and so thankful you have Hospice.

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Reply to AlvaDeer

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Don't be afraid to get your rest as your dad will go whether you are asleep or awake and when it's his time to go.
It sounds like it won't be long now so make sure that you've left nothing left unsaid with him, so you'll have peace after he's gone.
And know that you can have your dad taken to the hospice home if him being at home is just too much for you and the family. They will take really good care of him there and you and your family can just enjoy whatever time you may have left with him.
Also the hospice nurse is supposed to be with you and the family around the clock if necessary and you request them to, as your dad nears the end, so don't be afraid to ask them.
And no I wouldn't hire someone to come sit with him, as that is what hospice is for.

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Reply to funkygrandma59

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Definitely. The nursing home where my late husband was a private-pay resident called me and told me he would probably die within the next day. I called his hospice chaplain (also a part-time priest with our parish) and he and I met at the nursing home at around 7 pm that night. The chaplain gave him Last Rites and then I played some peaceful music on my phone for my husband. I told his charge nurse that I didn't think I could be there when he died and/or wait indefinitely until he did. She told me that some people can do that and some couldn't; don't feel guilty if you cannot. So I went home. The next morning I got a phone call from the nursing home's social worker at about 7:30 am saying that my husband had died. The next thing was to call our priest and plan hubby's Requiem Eucharist, which I didn't do until about 10 am. We met the next day for that and scheduled a time for the Requiem Eucharist (later than I had wanted because his three sisters had planned a short vacation for that coming weekend and couldn't get their money back). I wanted the sisters who were willing to be lectors for his Requiem Eucharist to attend so we accommodated their schedule. We had the visitation the day before in our parish hall (the church provided light refreshments, coffee, tea, and soft drinks) and the funeral the next day, followed by a procession with the hearse and the rest of us behind for his burial in a nearby cemetery. Then I treated family members to lunch at a nearby restaurant and other friends who attended the lunch paid for their own food and drinks. One thing you should be thinking about is what type of funeral and/or memorial service your dad would have liked. If you (or he) don't belong to a church, synagogue, mosque, or temple, that usually occurs in a funeral home, although I've hear of others at parks or even large backyards.

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Any suggestions for end of life care? We’re listening to hospice, but welcome any comments you might have based on experience.

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