Hospice stories?

[YaelAldrich]

I came back from Adelaide Australia 10 days ago because my mother decided to go on to hospice care after almost five years of cancer treatment.  She was a little weak when I got here but able to move about (a little shakily), mildly confused but able to do some/ many daily life activities, and was awake about seven hours a day.  Over the last 10 days she's more confused at times, extremely weak (needs a cane but still starts to fall several times a day (I've caught her) ), and sleeps about 20-21 hours a day. I have recalled the younger kids who are in Australia and they are coming on Wednesday.  The older boys saw her two weeks ago (one is now in Italy at summer school)  as did my DH (now back in Australia) .  

I know dying is different for every person (my sister of blessed memory was only in inpatient hospice for about 48 hours before she died of breast cancer) but can y'all tell me your experiences? Good or bad,  I want to hear what might be.  Thank you in advance. 

[mlktwins]

I’m so sorry. Do you know if she is on morphine and, if so, how often they are giving it to her? 
 

ETA: We had both my MIL and FIL on home hospice at the same time.

Edited May 14, 2023 by mlktwins

[Kassia]

I'm sorry too.  My only experience with hospice is similar to your sister's.  

[math teacher]

I'm so sorry!! My father in law was on hospice for several months. The only downside we found that if he had a medical need that was not under his hospice diagnosis (what he went into hospice for - don't know what else to call it), we were on our own. We had to take him to the clinic several times for things not related to the hospice care. State laws vary, I'm sure. I thought this was pretty pathetic.

[YaelAldrich]

15 minutes ago, mlktwins said:

I’m so sorry. Do you know if she is on morphine and, if so, how often they are giving it to her? 
 

ETA: We had both my MIL and FIL on home hospice at the same time.

I forgot to add she's not on any pain medications and she isn't in pain.  I think she's mostly dying from liver failure and uncontrolled diabetes She wasn't full blown diabetic until her hospitalization last month. The medicine to treat her liver issues is a concentrated sugar solution. And she didn't want to be poked for blood sugar draws so she is just on an oral diabetics med.

[DawnM]

My dad went into a hospice house 10 days before he died.   The first 5 days he was eating and drinking but on Christmas Day they called me and said he stopped eating and drinking and asked if they could give him morphine.   Once he went on the morphine, he never woke up when we were visiting.   He passed away 5 days after Christmas.   

I tried to get them to give him morphine about 2 weeks before they actually did.   The doctor would only give him codeine.   I wish I had pushed harder.   But my main priority at that point was fighting hard to get him into a hospice house, which I was able to do after a lot of back and forth.   

My point?   You still need to be her advocate and make sure she is getting the care you want her to have.

[Farrar]

I've had a few really diverging experiences of hospice care. My step-father was on hospice for more than a year. He was definitively dying of cancer, but he had such good advocates and care that he outlived everyone's expectations. He died at home. They had someone come in a few times a week and being on hospice also meant an approach to treating his pain that was appropriate to his situation. But my grandmother was on hospice for three days before dying. I think my father was on for like a day. So that's more similar to your sister.

One thing I've aware of is that my step-father's experience more than a decade ago now where he had such great care and such a positive outcome seems to be rarer. A lot of hospice organizations are in it to make money now and they focus on enrolling people. There was a large Pro-Publica piece about it. I think about a decade ago or so, I started hearing many negative stories about hospice care from friends dealing with the deaths of relatives. These practices have hurt the quality of hospice for everyone. So I'd just be alert. I think some hospices are excellent, but it's no longer the way it was twenty years ago where you could just trust hospice to be amazing. It's now more liking managing any other healthcare experience in America.

[YaelAldrich]

@DawnMand @Farrar, I've been on top of the hospice team and they are better than the hospital team before them.  They did their best to contact me in Australia and now that I'm here they have given a call back 90% of the time.  I asked for an extra visit late last week Wednesday because of the rapid decline and the nurse came Friday.  He'll be back Tuesday.  They have gotten all the durable equipment we've asked for,  although my father literally threw a hissy fit when the guy came with a big oxygen machine and tank as my mother's O² levels have decreased.  He claims he said they were going to bring a tiny concentrator  (they didn't. I was there. ) and that is to go back next week. He won't let her use it.  They also brought a nebulizer and suction machine which really hit home to me that they are preparing for the end.  I'm waiting until my kids get here to move a bed out of a bedroom to fit in a hospital bed. 

[YaelAldrich]

Oh, another complication is that my father is sleeping very little because he insists on sleeping with her and they wake each other up multiple  times a night.  So now my dad who used to take little cat naps during the day falls asleep at the drop of a hat all day long.  It isn't safe but he refuses to do any different. 

[KrissiK]

I am so sorry!!

My hospice story is good. My dad had dementia for years. Then, in July 2021 (on a Friday) he collapsed (still responsive) and my mom called the ambulance. They took him to the hospital. they found it he had lost half his blood volume (seepage). They released him to skilled nursing under hospice on Monday. He was responsive and communicated all week. we visited him. Saturday mid-afternoon the nursing home called my mom and me. He was unresponsive. We sat with him, sang to him, read Scripture, prayed. The hospice nurse was beyond wonderful. She explained every step in the dying process, she made sure Dad was as comfortable as she could make him, even down to giving him some drops for his saliva because he was gurgling. She was available constantly. but never hovered.  My kids were able to come in and say “good-bye”, even though the facility was on Covid lock down. It was a very meaningful time. And then when he passed, I was with him. My mom had stepped out for a moment. (it actually went much more quickly than anyone anticipated). It was a very precious time for me.

Edited May 14, 2023 by KrissiK

[barnwife]

My dad lost his battle with pancreatic cancer about 5 years ago. The short version of hospice (as I am about to go to church) is that we had an absolutely wonderful experience. The hospice workers answered questions, fielded phone calls in a timely manner, explained things to possibly expect, and more. It made a horrible path to walk slightly easier. 

I'll try to come back and add more details after church.

[prairiewindmomma]

We’ve had a few rounds of hospice. The key indicator across our experiences has been when we start to see organ failure through darker colored urine. After that, it always seems to be just a few days. We’ve been lucky to skip air hunger, for the most part, and oxygen seems to keep people more alert and coherent. We’ve used a suction device in other medical care, but it wasn’t necessary across our experiences at end of life. Mucous did become thick and stringy but wiping across the mouth seemed to be more helpful and as they had already stopped drinking and eating much and everyone was tired of medical intervention, that was enough. We’ve uniformly had good experiences with hospice but that may be flavored with the fact that we got our equipment and comfort med boxes early on, we don’t mind being hands on, and we know what death looks like and aren’t afraid of that for our loved ones. No one has fought the process, iykwim. One had to bounce to hospice house at the end for better pain control. Some deaths were quiet and peaceful, a couple haven’t been in the actual moment of dying. 
Breathing can stop before heartbeat…for a couple of minutes. 
 

Your dad sounds very stressed out. If you promise to sit with her and watch and wake him if something happens, will he sleep? Often there is a huge fear of missing the end. His memory will likely continue to be off due to the stress and sleep deprivation…maybe some emotional volatility too. It can be harder on the loved ones than the person who is dying.

[Mrs Tiggywinkle Again]

Liver failure can cause rapid onset of confusion and weakness, which just continues to progress until the end.

My personal experiences with hospice are old.  My grandfather lingered much longer than expected and spent months on hospice in excruciating pain that wasn’t controlled by any amount of narcotics.  It was unpleasant at the minimum.  And this was back in the 1990s when hospice in my area was much more hands on, with daily RN visits, CNA care in the home, respite availability.  You’re lucky to even be signed onto hospice now before passing due to the wait times and lack of nursing staff.  They were great though and extremely helpful.  My other hospice experience was my great grandmother who was dying of a hemorrhagic stroke and they were trying to get her home before she passed, as that was her wish.  She died in the ambulance on the way home, and it was a cluster because she hadn’t been signed onto hospice yet.  But the hospice nurse was very kind and they got the paperwork figured out(my guess is fudged is more accurate).

They may be able to help support your dad if asked, at least by explaining what death from liver failure is likely to look like and the natural progression.  Fortunately, it is not something that is normally very painful.

[Corbster98]

Both Dad (ALS)- 10 yrs ago and Mom (metastatic breast cancer)- 3 yrs ago were on hospice those last couple months of life. We had an amazing experience with in-home hospice care. My brother, sister and I were all regularly involved and caregivers/ advocates for our parents so that may have helped with the experience being so positive. The nurses and staff that we worked with were compassionate, available and did a fantastic job of being physically and emotionally supportive without hovering. They answered all of our questions and provided insight as to the dying process and what we could expect to see. 

When Dad passed the hospice team didn't rush us and allowed us the time we wanted and needed with Dad before having the funeral home come and get him. Both of my parents passed peacefully and were comfortable in the final stages.  We felt very supportive and fortunate for Hospice both times. 

[ArteHaus]

Both of my parents were in Hospice care, but I can’t remember much about my father because I was a young teenager.

Last year my mother spent two weeks in Hospice care. She had brain cancer which disabled her speaking ability and walking ability. My brother and I struggled to take care of her (we had to do everything). It was very difficult to change her and keep her clean, so we needed Hospice dearly. They helped us lift her and clean her as needed. 

However, we didn’t use hospice until we absolutely needed it, and the folks that attended my mother were lovely. They also were really good at keeping us aware of changes in her health and how long she had to live, like we knew what breathing patterns to look for (I guess the stages one goes through when passing)  that would indicate a transition. She didn’t receive morphine until the night she passed. 

If your mother is still walking, it seems early for Hospice, but surely that is different for everyone. 

[barnwife]

6 hours ago, ArteHaus said:

If your mother is still walking, it seems early for Hospice, but surely that is different for everyone. 

No. I believe hospice is for anyone who is expected to pass within 6 months. Walking has nothing to do with it. And frankly, I think many situations could use resources from hospice before they actually start to access them.

Anyway, fwiw, my dad started using a hospital bed at home on Saturday. He passed that Monday evening, so just over 48 hours after he quit walking. He absolutely benefited from hospice//hospice resources prior to that.

Keep in mind that even experience hospice workers can't predict how quickly someone will pass, even close to the end. The last visit from a hospice worker for my dad was Monday morning. We specifically asked her if she thought he was showing signs of being really near the end. I don't remember what she all looked for/showed us, but she (who'd been with hospice care for a long time) opined that my dad wasn't really at the end yet. He passed that evening not long after I put my kids to bed. 

A couple of the hospice workers even came to my dad's funeral. 

Our hospice workers were great at giving us a good amount of information about what to expect/what was happening and as they answered our questions. I am absolutely sure they get a lot of the same questions from lots of families and yet they answered patiently and respectfully. 

I can not say enough good things about our particular hospice program/the workers we encountered.

Now for a different experience...a friend lost her mom to breast cancer. Looking back, she wishes they had started accessing hospice services long before they did. They were under the impression it was for people at the very end of their life and so kept waiting to start. Also, she feels only okay about the workers they encountered. But, importantly, she is glad they used what hospice services they did, even if they weren't thrilled with the particular workers they encountered. 

ETA: I am very sorry you are walking this path. Cancer sucks. You and your family will be in my thoughts and prayers.

Edited May 15, 2023 by barnwife

[Ottakee]

12 hours ago, YaelAldrich said:

Oh, another complication is that my father is sleeping very little because he insists on sleeping with her and they wake each other up multiple  times a night.  So now my dad who used to take little cat naps during the day falls asleep at the drop of a hat all day long.  It isn't safe but he refuses to do any different. 

Can you put in a hospital bed and then a twin right next to it?  My friend and her husband did that the last 2 weeks before she passed away.   Then they are close together but not waking each other up as much 

[Minerva]

We just had hospice care for my FIL. I cannot sing their praises enough. Not only did they make the last few months (and especially the last few days) of my FIL's life comfortable, they really helped prepare my DH and sister in law for what was about to happen. My FIL's death experience was peaceful and comfortable because of hospice, and we are so very grateful to the compassionate, kind, and experienced people who do this very difficult  work. 

I am so sorry about your mom and glad you get to be there with her <3.

[MercyA]

I've had only good experiences with hospice. My FIL passed away at home, surrounded by his family, with hospice care. It was peaceful and all the workers were very helpful. They helped my MIL, DH, and his siblings know what the next steps were and what to expect along the way.

My grandpa received care in a hospice house. They were so kind to him. At one point he wanted to hold a beer, just hold it, not drink it. So of course they got him a beer. He fell asleep with it in his hand and spilled some. They were very kind and changed his sheets, while he joked, "What a waste!" 🙂 We still use that phrase today in our family.

I'm so sorry, Yael. May your mom's passing be peaceful and may your dad be granted rest and comfort.

Edited May 15, 2023 by MercyA

[TexasProud]

13 hours ago, Farrar said:

 

One thing I've aware of is that my step-father's experience more than a decade ago now where he had such great care and such a positive outcome seems to be rarer. A lot of hospice organizations are in it to make money now and they focus on enrolling people. There was a large Pro-Publica piece about it. I think about a decade ago or so, I started hearing many negative stories about hospice care from friends dealing with the deaths of relatives. These practices have hurt the quality of hospice for everyone. So I'd just be alert. I think some hospices are excellent, but it's no longer the way it was twenty years ago where you could just trust hospice to be amazing. It's now more liking managing any other healthcare experience in America.

Yep.
 

My mom just got tired of the treatments. The last drug she tried gave her explosive diarrhea.  She just didn't want to try the last drug and I was ok with her decision to go into hospice.  She was walking and doing great and I was thrilled that she was doing this early as I always heard the earlier, the better. I heard so many promises ( and my husband was there and as a physician asks a ton of questions) about how peaceful her ending would be at home.  How a nurse would be there at the end 24/7 when we needed it, blah blah blah...   

They did do a good job of getting the medical equipment. The first 3 days, while I was there it was good and the nurse came and everything seemed ok.  I left and a couple of days later my mom called saying it had been a horrible mistake to call hospice and that they were going to kill her and she wouldn't last the week ( which turned out to be true).  My mom went from walking around, happier than I had ever seen her, I have great interviews we did on that Sunday to passing away on Saturday.   They didn't make sure she took her meds ( which we talked SPECIFICALLY about) and without her antacid it began to hurt her to even swallow water.  I was so mad when I got there. They would call the hospice nurse when she was leaking and it would take 3 hours or more for the nurse to get there.  As someone mentioned above, I think they overpromised and the nurse was WAY WAY to overstretched.  She was at a house in a suburb north of Dallas. It took her an hour to drive to my mom's.  At minimum there should have been an on call nurse for just Tarrant county...  It was up to us to dispense the medicine. My husband still wonders if he did enough and if she was in pain.  He didn't want to give her too much.  He wasn't a hospice person. He is used to making sure people don't end up addicted.  HE shouldn't have been the one to direct us.  The hospice nurse should have.  When she could no longer breath well at the end, I am so glad my husband was there to help me figure out how to hook up the oxygen.  Honestly, trying to do all this stuff at the end and figure out if the dose was ok...   And those promises about having a nurse there at the end....  Yeah, they knew she was going to die that day.  Told us she would, but said unless her pain was unmanageable with morphine every hour, they couldn't send someone.  So it was us... he breathing was labored... was she in pain.... I don't know.  The hospice nurse showed up for 10 minutes.  Said, yeah agonized breathing, give her more and left.  

Calling this hospice agency was the worst decision in my life.  And yes, I asked questions, lots of questions and so did my husband.  What they promised they didn't deliver.  My aunt was horrified.  Yes, I think it was all about money. 

[KrissiK]

2 hours ago, barnwife said:

Keep in mind that even experience hospice workers can't predict how quickly someone will pass, even close to the end. The last visit from a hospice worker for my dad was Monday morning. We specifically asked her if she thought he was showing signs of being really near the end. I don't remember what she all looked for/showed us, but she (who'd been with hospice care for a long time) opined that my dad wasn't really at the end yet. He passed that evening not long after I put my kids to bed. 
 

That was our experience. too. My mom and I came in mid-afternoon. The hospice nurse said it could be 2-3 days. He was gone by 7:00 that evening.

[lewelma]

.

Edited May 15, 2023 by lewelma

[klmama]

YaelAldrich, I'm sorry your mom is nearing the end.  I'm praying for you all as you face this challenge.

Home hospice care here was another over-promising story, unfortunately, which I don't feel comfortable posting online.  Nevertheless, here are some lessons learned that might help you or someone else reading this:

• Hospice nurses may not give accurate predictions of when the end will come.  It could be MUCH sooner than they expect.  Say what you want to say to your loved one TODAY, while you still have the chance.  Others who are arriving later may not arrive in time and may end up feeling a lot of guilt/regret about that; I encourage you to arrange for them to have a visit TODAY using technology, just in case -- telephone, Zoom, etc. 
• It's common for people nearing the end to fall while trying to get out of bed to go to the bathroom.  Depends or a similar product may help, if they are able to remember they are wearing it.  Bedside toilets may also help, as can bedpans.  
• If your loved one falls and can't get up, call the EMTs, rather than trying to lift them yourself.  The EMTs know how to help without causing excess pain or breaking anything.  
• If your loved one needs morphine, but can't swallow pills anymore, it can be prescribed as oral drops, which can be given even if the patient is sleeping.  It might be hard to find at local pharmacies, though; ask where the best place to find it is.
• Even when people are drugged and/or don't seem conscious, they may be able hear everything that's said around them.  Say what you still need to say, while they are still here to hear it.
• The point of home hospice is to have professional help to die at home, not to suffer at home from poor care.  If you don't feel your loved one's comfort needs are being met through home hospice care, consider transferring to an in-patient hospice unit.  

 

[YaelAldrich]

15 hours ago, Ottakee said:

Can you put in a hospital bed and then a twin right next to it?  My friend and her husband did that the last 2 weeks before she passed away.   Then they are close together but not waking each other up as much 

I've thought about that.  The room where we thought about putting the hospital bed is too small to do that easily.  We would move then into the bedroom where I am but then we need to relocate a queen bed and headboard.  

[YaelAldrich]

Well,  this morning she got out of bed without alerting anyone and fell in the bathroom.  I heard a thud and went to see what was happening.  Thank goodness I could just squeeze in the room and help her up (thank goodness for the shower stool since I needed something to get her to sit up on since she was on the ground on hands and knees) with my father's help.  She's got a goose egg on her forehead.   We've asked her to please ring a bell when she wants to get up and about.  And I'm concerned that she will do it again.  Sigh. 

[Starr]

There are floor mats and monitors that alert you if someone steps on them. Maybe that would help. I’m so sorry about the fall. 

[prairiewindmomma]

Continuing to think of you all ❤️❤️❤️

[YaelAldrich]

1 hour ago, Starr said:

There are floor mats and monitors that alert you if someone steps on them. Maybe that would help. I’m so sorry about the fall. 

I'll take a look, but boy howdy she really got upset when her bed was alarmed in the hospital.  I'll talk to the hospice when he comes tomorrow. 

[Spryte]

I’m so sorry you are going through this. Sending hugs.

Thank goodness the fall was not worse, and you heard, so could get up and help.

My MIL was in hospice care for 18 months, till Feb. It was a neutral experience, really. FIL is in hospice now (we are on week 3, I think), and it’s been incredibly helpful. 

[Harriet Vane]

On 5/16/2023 at 12:53 AM, YaelAldrich said:

I'll take a look, but boy howdy she really got upset when her bed was alarmed in the hospital.  I'll talk to the hospice when he comes tomorrow. 

We used a pressure mat on the floor next to the bed. FIL stepped on it when he got out of bed, and it rang an alarm on my phone. He never heard the alarm because I was not in the room with him. I'd just bustle in as though I just happened to be checking in to say hi, or I might say, "I heard you moving in here and figured you were awake. Everything okay?"

Also we secretly set up his room with a video camera that we could access via our phones. He had severe dementia--he would have been furious about the camera, but it saved our lives. It was such a relief to be able to check on him when he was alone in his room. We weren't trying to be intrusive. We just wanted him to be safe. The further into dementia he went, the more necessary the video camera was.

[YaelAldrich]

We moved to the hospice home Saturday.  She got a respite bed (five days maximum)  but she's not going to make it that long I believe. Her lungs are full of fluid and her blood pressure is amazingly low.  

 

The Korean community is rallying around  her. She has been president of the Korean community in our area for many years and has been a leader in her church as well. We have had so many visitors with tears in their eyes and tell me how my mother was the person who greeted then when they were new to the US. It only confirms that my mother was a true leader.  

 

Please pray for a peaceful move to the Next World. 

[lauraw4321]

Prayers for peace. 

[Drama Llama]

36 minutes ago, YaelAldrich said:

We moved to the hospice home Saturday.  She got a respite bed (five days maximum)  but she's not going to make it that long I believe. Her lungs are full of fluid and her blood pressure is amazingly low.  

 

The Korean community is rallying around  her. She has been president of the Korean community in our area for many years and has been a leader in her church as well. We have had so many visitors with tears in their eyes and tell me how my mother was the person who greeted then when they were new to the US. It only confirms that my mother was a true leader.  

 

Please pray for a peaceful move to the Next World. 

Praying for peace for both of you.

[Ann.without.an.e]

Praying for your family during this difficult time.

[Kassia]

Sending hugs to you @YaelAldrich and praying for your family.  

[dirty ethel rackham]

Praying for peace and comfort.  

[Pawz4me]

I hope her transition is peaceful, Yael.

[cintinative]

Praying for you.

[Minerva]

Thinking of you both and hoping for a peaceful transition.

[Wishes]

Warm thoughts and a virtual hug. Your mom sounds like an amazing woman.

[TexasProud]

Huge hugs.

[YaelAldrich]

She passed peacefully this morning.  

[Drama Llama]

I am glad it was peaceful, but so sorry for your loss.

[porque?]

So sorry for your loss and grateful that her passing was peaceful.

[TexasProud]

So glad it was peaceful, but very sorry for your loss. 

[prairiewindmomma]

May you find comfort and peace as you remember her….hugs to you all!

[Amira]

I’m so sorry. מן השמים תנוחמו

[Pawz4me]

I'm so sorry, Yael. Gentle cyber hugs.

[Terabith]

I'm so sorry for your loss, and also glad it was as peaceful as it can be.  

[Kassia]

@YaelAldrichthinking of you.  I'm so sorry for your loss.