End of life care. Any advice?

As a person who is NOT interested in life saving measures … i have a tattoo that says “no code. No cpr. Stroke meds ok” which ive been reassured by an emt will be IGNORED but im hoping will alert them to look for my paperwork … i can assure you that if your mother is sincere in her wishes that you should give her comfort measures only.

it is difficult watching a loved one die when you can only stand by. I know … i had to watch my son die of aids and there was not one thing i could do to reverse his condition.

i find the thought be being hooked to a machine, not knowing how long it would be and would seem like forever, to be horrible beyond belief.

yes it’s scary. But it cant be helped. We’re going die one way or the
other so why not as comfortably as possible and hopefully with a loved one nearby.

the only thing i regret about my tattoo is that i didnt include “pain meds ok” but my paperwork has it so i guess if no cares about my tattoo it wont matter anyway.

I suggest you talk to the hospice folks taking care of your mom to see what they have to say. In my mom’s case, I recently encountered Hospice social workers, CNAs, nurses, a pastor and volunteers who provide some degree of care depending on each situation.

My 86 year old mother passed on Dec 1, 2022, after having a stroke on Nov 28. She lived in Delaware and I live in California. She had a DNR in effect and did not want to be kept artificially alive. She lived alone, her choice, independently until May. She was hospitalized twice, once with Afib and CHF, and then again due to toxicity to one of the prescribed heart meds.

My mom had home care aids providing assistance and she had been having hospice care since mid October. She was transported to the ER after the stroke but due to the DNR was then taken to a hospice facility where she was kept comfortable and out of pain. The stroke affected her right side and she could not speak and was non-responsive afterwards. I video chatted with my mom 2-3 times a day and had talked with her that morning. I made arrangements to go see her the Saturday after the stroke but she passed on Thursday before I could get there. Her funeral was Dec 10. (I stayed with her for 6 weeks after the first hospitalization this spring and again for 2 1/2 weeks after the second one this fall.) The Delaware Hospice team took great care of my mom in their Milford, DE Center and she was not alone when she passed. My mom was so miserable the last month or so due to leaking legs caused by the CHF. She refused to take her meds, she developed a sore on her right heel, had pain in her left foot, couldn’t taste most food and at the end, couldn’t speak. As much as I miss her, I logically know she is better off and no longer suffering or “living” in a way that caused her so much misery. Had she lived a bit longer, I believe I could have been with her at the Delaware Hospice Center 24/7. I don’t know how other hospice operations do business but I found them to be the most kind, caring and compassionate people I’ve ever met. They were very supportive and could answer my questions…except for how long my mom might last.

Hospice and palliative care focus on the patient's comfort so he/she can have "quality of life" instead of "quantity of life." So, there should be a nurse to monitor pain or anxiety and give medications when needed. Friends and family should be encouraged to visit. Check with the facility about visiting hours and overnight stays - usually not a problem, but weeklong stay would probably present problems. Most facilities are designed to be permanent, but some patients opt to receive palliative/hospice care at home - with permission of family who help care for them.

Wife of 62 years , we came to Assisted Living place, we both had knees problem that we could not make the stairs. Also wife had dimentia, wife was allert but could not remember present n she was doing soudoku and also crossword, was in pain and after two years could not walk even with walker, she did ask several times if it was ok to wish to die, after a few question from doctors an clergy
I told her it was ok, she was in a lot of pain,hospice came and took over ,they administered pain medication, and wife stoped eating, after five seven days she went in a semi coma and she passed away with
I holding her hand.
we were married for more than 62 years, I do not regret loosing her, she was suffering a lot, we had a good marriage..




her hand

This is not heartbreaking. Make sure she has proper paperwork. She will need a lawyer.
If you have ever seen someone on a ventillator, like I have then you will know why her thoughts are not heartbreaking. I made a living will for myself. I have one in my purse and on my fridge door.
I wear a bracelet that says what I am allergic to. YOU HAVE TO BE PROACTIVE when it comes to your health!

razzmatrazz: My mother suffered an ischemic stroke on January 9, 2014. She was hospitalized and on palliative care until her death on January 24, 2014. I was not allowed a bed in the hospital, of course, but went back to my mother's home every night. I had been living with her from my home state for an extended period. Prayers and hugs sent to you at this most difficult of times.

Since your mother is currently in the hospital use the resources they have to help you navigate your mother's end of life journey. First you need to ask the doctors if considering she will not be receiving nutrition an estimate of her time left. If they suggest palliative care then death may be more eminent as opposed to hospice where her time may be a bit more prolonged, and by that I mean perhaps weeks as opposed to just days. In either case the social worker can help also. If your mother, or you as POA, wish for in home hospice or in facility hospice the medical team and social work can arrange that to happen. If she is deemed palliative care and death may be more eminent it would be best to remain in hospital. In both cases pain relief will be a priority of her care and some questions of hydration will need to be decided upon, eg: IV for hydration and medication deliverance or no artificial means of hydration at all. As a nurse I would suggest having an IV just to be able to better deliver pain relief but again it is a personal decision. Besides the social worker spiritual help is available also if you and your mother wish it. Most units of palliative care or hospice often allow very liberal visitation and often allow a family member to stay overnight too. If your mother and you opt for in home care you will be taught how to administer pain meds by the hospice team. Depending on her insurance she might be able to have an aid come in for a certain amount of hours a day. If you choose in home care be aware that much of the care is on the caregiver. Choose carefully it is very hard to do. I've had the experience of caring for my brother and husband both at home and even though I'm a nurse it was extremely hard because it is not a patient it is your loved one. I wish you and your mother the best as you sort all these difficult decisions.

My experience: My Daddy and Mama did not want any kind of life support. I understood because neither do I. I asked my family if they wanted to be there when they passed and if they did I let them know how close they were. I wanted to hold my Mama and Daddys hand as they left and I did. It was comforting to me and I felt it was a comfort to them. My daughter also wanted to be there, so did one of my brothers. My other brothers did not. So it is all just a choice. As far as Hospice goes it depends on the company. My Daddys was there from the time he went into a coma until he left for the mortuary. My sister's Hospice would only come every other day and sent the comfort kit for me to distribute until she passed. So these are questions you want to ask yourself... are you comfortable with the end of life situation and can handle the comfort kit. I was able because a. I know and believe that our soul goes into eternity with Jesus b. I have dealt with death several different times. c. I have worked as a caregiver for several years.
You can call different Hospice companies and ask them what their policy is.
Hugs for this difficult time Peace for your heart.

These are all questions for the Hospice Administrator. You need to know what their policies are and an explanation of the methods they use. Just keep reminding yourself that you are human and that you have been placed as your Mom's representative (her words, her needs, her wishes). You will come away with a greater understanding of Hospice and might want to speak up if you see anything that is not right.

Take care of you, now.

First, I am sorry you are facing this. It’s a difficult time. It’s not clear from your post where your mother is now and what the prospects are for moving her (I wouldn’t think feeding tube would be an option in ALF). So it would seem the first order of business would be to decide the location.

If you and other family do want to be with her round the clock, the most comfortable option might be someone’s home. We cared for my MIL in our home after she was discharged from the hospital. The hospice nurse, social worker, and aides come to you, usually a couple of times a week, though they are always available by phone if you need them or have a question. In my area there are also facilities for residential care. They are mostly used for caregiver respite but I believe some patients stay there if they are close to the end, or if their pain management requires professional care. They aren’t staffed for constant caregiver presence but would seem to be a better environment than a hospital or nursing home. They might have more volunteer availability (we were never offered volunteers with my MIL). If you choose to provide her care yourself, the hospice team will provide all the necessary instruction for medication and provide all the supplies. My experience was that they were quite thorough with the information, they made sure we knew exactly what to do and were very responsive to our questions and concerns.

* Ask these questions to the Hospice nurse / coordinator.
- In my experience, different hospices work / are organized differently; some much more responsible and supportive to family than others.

* While this may not apply to you, individuals CAN BE admitted to hospice even though they are not terminal.

* It is heartbreaking and in my view, no one should be required to live like this, especially if they say they do not want to.

* Doing what is respectful doesn't mean a person doesn't grieve - and grieve through the process - which can be excruciatingly painful to us, witnessing our loved one, deterrent and in pain / depressed.

* My heart goes out to you. Many of us are going through the same process. It is also a spiritual process of letting go. Gena / Touch Matters

My mother was in a similar situation 20 years ago...had a stroke/ paralyzed on one side/ couldn't talk. Her biggest fear was ending up in a nursing home. she had a DNR in place and my sister and I decided that we must honor her wishes. Doctors said she would never physically recover from stroke so we placed her in a nursing home with hospice care. She maintained this way for about 6 weeks before she passed. While it was very difficult to watch her decline, our only saving grace was her DNR documents in place. As her medical POA, you have an obligation to follow her requests.
And yes...you can stay with her as long as you want.....I send you blessings of peace as you go thru this difficult time.

This is different for everybody.

I would still ask her to make all her choices as long as she can communicate.

If she is put on morphine she will fall into a coma-like state and she won’t be able to respond much. Talk with her as much as you can before this happens.

Stay when you feel, for as long as you feel. She will be safe and cared for when you need breaks.

Remember that you need caretaking now too because this isn’t easy.

Of course you don't want to let go--that is natural, you're Human but ask yourself "what would I want.
Dealing with a terminally ill brother, my advice would be to follow her instructions if you see there is no chance of recovery.
In my situation, while he was at home, Hospice did not stay overnight. They only stayed an hour or so to do certain things.
Once he was committed to the nursing home, we were allowed to visit but not stay.
Talk to the doctor because a feeding tube could be temporary allowing the throat to recover with physical therapy.

Both of my in-laws went into hospice care and died earlier this year. In both cases, we brought them to our home. I am happy to answer any questions you may have. In the case of my mother-in-law, she had kidney failure and would have had to have dialysis three times a week to extend her life "maybe by a few months" but either way would not be alive today. She basically stopped eating in the hospital before coming here and took only a few sips of water after that. I also think that because she had a bad bout of diarrhea during her last days at the hospital, this sped up the process. In answer to your question, no, hospice is not with you 24-7. They will come in and evaluate and give you the comfort meds, explaining each one and how to use them. After that a nurse will visit at regular intervals, (more toward the end), you will also have an aid for bathing them and other services as well as a counselor or clergy member who will visit to support you. In our house, I set up a bedroom intended to provide as much peace and quiet as possible. We put a darker curtain on the window, added soft lightbulb in the lamp. I also put an "Echo" speaker in the room so we could play soft music and the lamp was plugged into an alexa enabled plug so the lamp could be controlled by voice should she want to turn it on or off herself. We arranged everything so it did not look like a hospital and put in a chair right next to the bed so we could sit with her. We were able to spend many hours with her during that time. On her last day, I sat with her most of the day, prayed over her, sang to her (hymns and praise songs), and told her how much we loved and would miss her but it was ok to go. She died peacefully during the night with my husband by her side. When it came time for my father--in-law to go into hospice care two short months later, he was still eating upon arrival, albeit very little. He suffered from Parkinson's disease and had reached a point where he was failing swallow tests so we were doing what they called "comfort feeding" which is basically allowing them to have a few bites of very soft foods for their enjoyment as they would not provide enough nutrition to sustain life. He did ask for some things and we were able to give them to him. His decline was extremely fast, he was here less than a week but we were able to be at his side most of the time during that time. He was talking for the first day or two and told stories we had never heard, etc.
My mother is the only one of our parents still living. When the time comes, we will do for her what we did for my in-laws. It was comforting to provide their needs in their last days and while it was hard, it was worth it and we do not regret any part of it.

1. No hospice does not, as a rule, "stay with the patient 24/7".
2. Yes, family should be allowed to be with her as much as they want.
Indeed, having a rotation of family members with her may be something you as the POA want to discuss with the family . This will both provide her with comfort of a loved one's presence and, will allow the POA or primary person(s) to get some rest also.
3. Medication will be discussed with you ( and pt. as she is able to participate) by the RN, Case Manager of hospice team assigned to her . You should ask any and all questions about medication(s) and overall POC ( plan of care) at any time and indeed repeat questions if you feel you need further clarification or other options to consider. You ( the POA) and your mother are a part of the hospice team and your input is equally important to the time ahead.
The hospice case manager should provide you with extensive education about the proposed hospice care including providing you with EOL ( end of life) booklet ( sometimes called " Gone from my Sight") which gives a good representation of what you and the pt may experience . If they do not provide you with this , you are encouraged to ask for it ( or a similar title). All hospice agencies have one or another of these tools . You will also have the option to have multiple other hospice team members providing support with you, your family and your mother if you choose( ie. Chaplain, Social Worker, Volunteers, CNA ). be sure that you and your mother have access to your personal faith support clergy or others if you wish. The hospice Chaplain should be a good support also. Practice good self care for yourself as you will need this for the journey ahead. You are also encouraged to begin grief support with the Chaplain and or Social Worker now as grief is surely already a part of the journey and will continue to impact all of you. Honor your mother's wishes as best you can to support her dignity and patient autonomy .

Yes, it is heartbreaking. But it can also be a gift. You know you are following her wishes, doing what she wants.

If she is in a facility they may limit visiting hours for friends and family. But my experience is that when the end is imminent visitors are welcome any time.

Hospice does not stay 24/7. And especially now that everyone is so under staffed. My experience was with my Dad, who was home. The nurse taught us how to administer the pain meds and we did it ourselves. In a facility the staff might do it, I'm not sure.

Hospice nurses have to be the most compassionate people on the planet! To spend every day with the dying and their families takes a special gift. They will be there for YOU as well as your mother, offering information, support and direction. Please allow them to help you too. This is all new and frightening and heartbreaking. The hospice nurses can help.

As sad and painful as it is to watch your mother decline and finally pass, there is a certain grace in the experience. I felt honored and thankful to be with my Dad for his last days and final transition from life. I took comfort in knowing his wishes were fulfilled and he was being kept as comfortable as possible.

Wishing you peace during this difficult time.

In addition to a POA she needs an advanced medical directive. That will override the doctors mandate to keep some one alive at all costs and let them die a natural death.

My mother had a very short journey with hospice while still in the hospital, so her nurses administered all her pain medications intravenously. Both my husband and father went through hospice in my home so I was their caregiver and administered their pain meds and took care of them up until the end. Hospice checked in regularly to help give support. Having been through this journey 3 times I’d say to be with your mother as much as you are able. Do not fear being with her at the end. Most people have more regret if they are not with a loved one when they pass.

Unless your mom is in the hospice unit in a hospital, or at a hospice house, the answer is no, hospice staff and volunteers don't stay. They teach the caregiver how to do some basic tasks and check in. I'm a hospice volunteer, and I visit my client four times a week for about an hour, just to keep her company in this case.

Family members can absolutely stay. Hospice is all about comfort and support, for you, your mom, anyone close to her. They have chaplains if you like, a social worker, nurse, and nursing care, plus us volunteers.

You might try to reframe what you call this horrible journey and think of it as a gentle end to a life of someone who was deeply loved. She will be lucky to die with her family around her. It's heartbreaking, but it can also be a profoundly beautiful experience.

My experience with Hospice was that nobody from Hospice stay ed with the patient at all. A nurse came twice a week to check vitals and refill medications. An aide was available once or twice a week to help with bathing. Period. Any other cate or company was entirely up to family. ALF staff does not offer 24/7 company or care, either. If you someone to be with your mother, it will be family or a hired care giver if you can find one.

I am sorry for your pain and grief. This is a very hard time. Been through it several times. Hospice may want to move her to their hospice facility since she is in ALF and not a nursing home. Yes, you usually are free to come and go whatever the time.
They will closely monitor her pain and disperse as needed. My experiences with hospice were when my uncle and then daddy were still in their homes. We still needed a caregiver because hospice was in and out until death was closely imminent.
A girlfriend used a hospice facility for her dad and was very pleased with the experience.
God be with you and your family.

Very sorry to hear about your mothers situation but will pray for her comfort on her final journey.

I went through this with my Dad in January. He was already in the late stages of LBD and I didn't know. He fell and broke his femur. He had a hip replacement but refused to get out of bed. He failed 2 swallow tests. He also did not want to be kept alive via artificial means. Doctor asked how aggressive I wanted to be. To me, that meant they didn't think he was going to make it. He was already emaciated at 6'2 maybe 100 lbs. I opted for hospice as I did not want to go against his wishes and insert a feeding a tube. He was placed in hospice Thursday evening and passed the next Tuesday. It was one of the most difficult things to watch. I visited him every day and told the nurses to let me know when they thought it was close. They called me Monday afternoon. I went and something told me to stay the night. I did and I'm glad I did because he passed about 205am Tue morning. They gave him pain meds and Ativan to keep him comfortable and to help with his breathing. He was not conscious at this point but I still talked to him, played him Elvis music, etc. I was with him when he passed and it means so much to me. I still feel extremely guilty. What if I took him to a different hospital, what if I would've given feeding tube maybe he would've regained strength and gotten better but I know he didn't want that and made it clear in his Living Will. The what ifs still eat me alive but I also know he had issues swallowing prior to the fall, was eating very little and wanted to lay down all the time. I now know that he was already in the end stages of his LBD. His doctors never sat down and explained the stages of LBD so I learned after that fact how the disease progresses. Hugs and prayers to you. It's very difficult but as her POA, I think it's best to follow her wishes. She will be kept comfortable and surrounded by loved ones. The hospice house my Dad was at let people visit 24/7, stay the night, etc.

razz,

Because your post was from 5 days ago, I have to assume that things have progressed markedly and that either your mom has passed and is now living in a whole new body of light or that you and family are in the vigil phase.

I was a Hospice RN and carry many end of life insights, but I've also had to make that same call as MPOA for my Dad, when it became clear that he wouldn't survive off the vent that he was placed on and I made the call to have removed because he'd have never wanted, almost to word, what you convey in your last sentence. He lasted less that an hour after the vent tubing was removed; pain meds were on board in his final days and he barely roused from the induced comatose state required for the vent.

It is heartbreaking beyond any words to lose a beloved parent and I'm still grieving, we all are.

Since your beloved mother had, when you posted, not been taking in anything buy mouth for a couple days and systems were in process of shutting down, her brain was already producing natural opiates (among the reasons that Hospice doesn't give tube or IV feedings); the body provides it's own pain control with the dying process. RNs are attuned, as is family, to the subtle cues that indicate pain in a dying person. Pain meds are administered to cover pain and restlessness.

As you know by now, the decision of whether or not family stays at bedside for the vigil is individual to each family. Staff is not able to be there due to others' needs and Hospice can sometimes provide a volunteer companion.

I hope and trust that Hospice has provided you with ample support and guidance through this journey. You described the as a "horrible journey" out of your understandable emotional anguish, but please know that your loved one is meeting her Maker and her journey is one of pure, unfathomable beauty.

I wish you and yours solace and grace during this difficult time.

I just recently went through this with my mom. We are not sure but I believe she had a stroke and ultimately passed early November. I made the decision to bring her to my home but prior to that transition, I stayed with her at the ALF.

At home, Hospice did not / nor would they stay 24/7 but did send a nurse when I needed it. I hired private care for the nights and stayed with her during the day. As her conditions deteriorated hospice was there. I do not know what I would have done without their guidance and expertise.

Simple things like reading her body language and positioning her in the bed to be more comfortable. People tend to focus on the meds they give for comfort but in my experience, it was much more than that. They offered ME a companion that helped guide me through those last hours.

In my case, the meds came a few hours before she passed. She had some terminal agitation just prior to her passing, The hospice nurse administered the meds for us and gave us instructions on how to provide the additional meds if needed,

You are in my prayers. It is very difficult to lose a mom. It will be some time before I can recover from her loss,

If Mom's in a facility, they'll likely allow you to be with her as much as you want. My mom's MC was still closed to visitors for Covid, but I was allowed in because I was only in her room.

Is she getting any IV hydration? If not, she won't last more than a few days, I'd think. You can go without food for quite a while.

Was she seen by a speech and language pathologist regarding her swallowing? She should definitely be seen by one if she's still in the hospital. It should be part of their stroke treatment protocol.

When you get hospice on board, they'll talk to you at length about what they do, how and when meds are administered, and what to expect. All the hospices I dealt with for my parents gave me booklets explaining what happens in the dying process, too. You'll have support from them, because hospice is for the family, too.

Hospice doesn't provide the 24/7--if that's what you want for your LO, then it's up to you to provide it, to whatever extent you want/need.

Dad lived with mother and we kids spelled her off. Sometimes I took her out and went somewhere to get her mind refreshed. Dad had a peaceful and beautiful passing surrounded by all but one of his kids. We each offered a prayer, basically thanking him for being such a wonderful dad--and giving him our promise we'd look after mom and also releasing him from having to stay here on earth.

Very little of the actual care was done by the professionals. Bathing & dressing him, since he was a big man, yes. But the daily love and support he needed was provided entirely by family.

Both of my parents lived in AL and Memory Care AL when hospice care was called into the facility to care for them during end of life. Neither one of them had to move, but were kept until they passed, with hospice seeing to their care in house. They do not stay 24/7, nor do they come daily UNTIL the end is very near; once that is determined, the RN will generally come every day. Until then, the CNA comes 2x a week to bathe your mom or give her a bed bath/sponge bath, the chaplain comes once or twice a month, same with the social worker, and the RN weekly. She'll get supplies as needed, a hospital bed, and if she's bedbound, supplies to make sure she doesn't get bedsores (mom got booties so she didn't get bedsores on her heels), chucks, briefs, wipes, meds, and things of that nature. Family is allowed to stay with the resident as much as is allowed by the ALF; I went daily to stay with both of my parents until they passed.

Mom's RN asked me before she'd get the hospice doc to write a prescription for pain or anxiety meds; after I okayed it, then the staff would administer the meds to mom as needed. Low dose morphine was given to mom when she became bedbound (the last week of her life) if she grimaced or yelled out in pain when being turned, which was a sign of pain/distress. Mom was semi-comatose as soon as she became bedbound. Anti-anxiety meds were doled out for the two months mom was on hospice b/c she was Sundowning something FIERCE. The Ativan helped a LOT, thank God. Speak to the RN about meds, and how you'd like them to be doled out, etc.

It's a difficult journey to travel, that's for sure. I'm sorry you're going through this, and I wish you peace and Godspeed throughout. Sending you a hug, too, and my condolences for your impending loss.

My question would be if a Speech Therapist was called in. The Therapist can also deal with swallowing.

So sorry ur going thru this. No, Hospice is not there 24/7. They just monitor Moms care. She should be given an aide for bathing, you can see how many hours u can fit in there. The AL should have aides looking in on Mom to see if she needs anything. Besides the Hospice Nurse, the AL nurse or Medtech can help administer the meds. If Mom was home, family would be doing most of the work. At least you have others that can help.

I suggest you talk to the ALs nurse and ask how Moms care will be coordinated between her/him and Hospice. They may have a Hospice they work with. I think a meeting between the Hosoice admitting Nurse, the AL nurse and you would be a good thing. Then ur all on the same page.