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Why did I listen to Hospice?


Sallie

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My mother died 12 days ago on 9/2/15.

I am having trouble coming to terms with my mom's passing. I had cared for her for 5 years since my father's passing and she moved next door to me. Mom had COPD and we were told a week before her passing she was in the late stages, had 6 months to a year and had to go on hospice. She was on hospice two days before she fell broke her wrist. I took her to the ER and things spiraled out of control. Hospice gave mom a double dose of morphine before the ER trip. My mom was out of it and never fully came out of it. An ambulance took her home and we couldn't get her to wake up fully and her body was very ridged. Hospice guessed she had a mild stroke. Hospice told us to continue with morphine and agitation meds. I keep thinking if we didn't drug her up maybe she would have come out of it and lived.  I feel horrible and can't stop thinking about this. She only lived 6 days after she fell. Has anyone had doubts about listening to Hospice?

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Sallie,

I am sorry you lost your mom.  It's made all the worse by your feelings of guilt.  The truth is, you did the best you could and you're not a doctor. We rely on the professionals to give us guidance in situations where we don't know what to do.  I am surprised she was sent home after ER in the situation she was in, for the broken wrist was only one thing she had to deal with, the rest being more severe.  My heart goes out to you in your loss and I hope you'll be understanding and kind to yourself, as she would be.  You did the best you know to do.

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Sorry for your loss Sallie.  My Mom was on home hospice, they gave me a box of drugs for her, including liquid morphine. When I called them about a particular problem, they always told me to give her morphine. That used to really bother me and then got them to get Tylenol 3 with codeine. The times she had pain, I gave her that instead. It doesn't sound right, what happened. Could be she was so weak anyway, the morphine was to much for her to handle. Some of the drugs the doctor prescribed made her unable to swallow walk and talk. I tried the best I could to give her the minimal amount of drugs recommended.

 

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Sallie, my dear, I'm so sorry to learn of your mom's passing, and sorry too that you're having trouble coming to terms with how and when she died.  If, as you say, your mom was in the late stages of COPD, I suspect that it was her disease that caused her death rather than the medication she was given to alleviate her pain and suffering ~ but I don't know all the details, and I doubt if my saying that will bring you the peace of mind you're seeking. Since you are so uncertain about the quality of the care she received from hospice, I hope you will consider taking your concerns to the folks in charge of the hospice that was involved. I worked with a non-profit hospice organization for 17 years, and I can tell you from my own experience that whenever a family was dissatisfied with our care ~ for any reason ~ our administration wanted to know about it, and was always willing to sit down and meet with everyone involved (clinical staff members as well as family members) to learn what went wrong so we could do whatever we could to fix it, and to make sure it wouldn't happen to another family. Even if the solution came too late for the family involved, we wanted to make sure that if we could possibly prevent it from happening again, we would do so. Every hospice is different, of course, and I realize that some are better than others. Still, I hope that when you feel ready, you will consider asking for such a meeting.

I am so sorry for your loss . . . 

 

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Sallie- I am so sorry for your loss. My mom died in 3/2015. She too was in the throws of end stage COPD which is a terrible disease. She actually died from a stroke which in her case was a gift; she would have kept getting worse from her COPD and it frightened her so much. I agree with MartyT that you take your concerns to hospice. This is such a difficult time for you so please be kind to yourself and keep reaching out to others. Again, I am so sorry for the passing of your mom.

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The day my Mom died, she was in 'death rattle'. I didn't know what it was or what was happening. I called hospice and of course they told me to give her morphine andanother drug that helps with breathing. I didn't know that she was dieing right there and then. They sent out a nurse to help. Shortly after she left, my Mom died. The next day, still being in shock, I talked to the clinical manager for my Moms case and asked her what that was, the gurgling sound she was making and respiratory distress.

She explained that her kidneys had shut down and the liquid in her lungs made that sound. What got me was why they didn't give me any education before hand on what to do and what to look out for. I had an intense email exchange about this with them later and they assured me they were going to make changes. I found this website that has all the information I needed to know from day 1 of her home hospice. http://kokuamau.org/resources/last-stages-life If you are a caregiver or know of someone who is, please let them know about this site. It explains it all very well.

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It is always such a sad time when a loved one dies. I am so sorry for those of you who have lost anyone dear to you. 

Sallie, I am so sorry for the loss of your Mom and I am sorry for those of you who did not have a positive experience with hospice.

My experience with hospice was a good one and I want to share it ~ it is long so you may not want to read it all. This is my story.

I want to go back to what Marty said about not all hospices are the same. From what I have been reading, that rings true.

My experience with hospice for my husband, Jim was a truly wonderful experience. When I made the first call to Hospice of the Valley in Arizona I was given some information about what they do. Our first step was to have a meeting with a Hospice of the Valley social worker who came out to assess Jim’s situation. She was very detailed in what the steps were going to be. Her first phone call was to our Primary to see what he thought about Jim beginning hospice. If your Primary doctor gives the go ahead then your loved one enters hospice immediately otherwise they can begin Palliative Care until they are ready for hospice. After our Primary touched base with the social worker he said Jim was ready so the social worker called us back and said that we would work with a Team who would be with us throughout his journey. Our Team was made up of a social worker, a nurse, a chaplain, a health aide, and volunteers.  We could continue with our Primary doctor or use the HOV doctor. We chose to use the services of the HOV doctor because they are available 24/7 and they come to the house or wherever the client is at the time. Other services available to us were a volunteer veteran who came out and acknowledged Jim’s time as a pilot in the Army AirCorp.

Someone on our Team was available 24/7 with only a phone call away. When I needed help for Jim during the night all I had to do was call and a nurse was sent out if I needed her.

Our Team was not only available to Jim but to our entire family. I think our nurse spent more time with family explaining what was happening and how Jim was doing and what was going on as death drew closer. It can be frightening if you don’t understand what is happening. Our nurse kept a close eye on me to be sure I was getting my sleep and if I was taking care of myself. When Jim developed a UTI because he wasn’t emptying his bladder completely she suggested that he spend a few days in the hospice section of the hospital until he was stable ~ it was also to give me some respite. It was at this time I hired another nurse to be available when the hospice team was not scheduled to be with us. This helped me be more wife than caregiver and I am so happy to have been able to do that. It is important that you get all the help you can afford to help you for you cannot do it all yourself.

I was alone with Jim the night he died. He was still focused on me but could no longer talk. I believed his eyes still spoke. I knew he was comfortable. I knew he could still hear. When he passed I spent a few hours just being with him, talking to him, washing his face and treasuring those moments before I made the phone call to family and to our hospice nurse. I knew he was gone, but the hospice nurse pronounces the death if your loved one dies at home.

Our nurse was with the family after Jim passed. She was an extension of our family. She stayed as long as we needed her. To this day, I remain grateful to all those who helped Jim finish his journey on this earth.

My experience with Hospice of the Valley in Arizona was something I will always treasure.

Several weeks after Jim’s death someone from HOV called me to remind me that they have grief counselors available (free) for a year and if I ever wanted to take advantage of a grief counselor all I had to do was call. I made a very wise decision to make that call and I truly believe that by accepting the services of a grief counselor I am at a better place than if I had tried to do it on my own. Education is the best therapy and taking advantage of all the Tools for Healing helps.

Our HOV also has free group sessions that meet twice a month if someone is interested. 

Anne

 

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We had hospice for my mom, as well, at the dementia care center.  They weren't her caregivers, but they added to what we already did for her, and they were a blessing.  They went to bat for her to get her a better fitting wheelchair.  They assisted whenever/wherever needed.

My friend, Jim, when take care of his mom at the end of her life, didn't have great experiences with hospice.  They kept calling his mom an incorrect name, which was disrespectful to her.  They kept sending different people who would ask the same questions over and over, which was frustrating and upsetting to both of them.

I realize that it depends largely on who is providing the hospice, and some have a better experience than others.  I'm sorry some of you didn't have a good experience.

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We did get a lot of help from hospice, they did make it easier. They supplied us with chucks, a hospital bed, medications, social worker, nurse, doctor visits.She had to be re-certified every 3 months for medicare to pay for it. What they didn't do is supply 'information' about what I was in for. Like in that linkI posted, if I had that information a head of time, it would have made it easier for me because I had more of an idea of what was happening. I had to figure it out in real time. I never knew for instance that I was 'helping my Mom to die as peacefully as possible. I was trying to make her live as comfortably as possible. I had no idea of the process of dieing. They should have explained that to me from day 1.

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I agree, Dave, that that would be of immense help.  I think some hospice are better than others at explaining it.

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  • 2 months later...

I am in the same boat right now, and looking for answers on what to expect. My mom is on hospice (hospice of the Valley, in Mesa AZ). My mom in in end stage CFH. The nurses are coming every few days to wrap mom's legs (they are leaking from severe edema). Mom is on morphine and anti anxiety drugs and she is totally out of it. She is no longer able to do anything by herself. My father hired aides to take care of her. She sits propped in a wheelchair almost completely unaware of what's going on around her. I don't know how long she will continue this way, and I can see my father's health deteriorating as he tries to help care for her. I do wonder if the morphine is responsible for some of mom's mental decline, or maybe it's just lack of oxygen to the brain. We didn't use the morphine for almost two months after hospice delivered it, but now mom asks for it every few hours. I do wish the hospice workers would have told us more about the dying process. I'm getting my education online.

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I am so sorry to hear of your Mom’s deteriorating health due to CHF.

I am sure if you were to ask your Mom’s hospice nurse she would be more than happy to talk with you and your family about what to expect at end of life.

If you have not already found the work of Hospice nurse Barbara Karnes, RN I offer a few pieces of her work that I still treasure from when my husband was at the end of his life. She is knowledgeable and a tender soul.

Since you live in the Mesa area, they have services available to you and I’m sure your Hospice Team will sit with you and answer any questions you have.

End of life education materials

Does morphine hasten death?

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I'm sorry to hear of your mom's dying too.  I lost my mom a year ago in August (Dementia & Leukemia).  You can talk to Hospice, they'll answer whatever questions you have.  Maybe it's a blessing when they aren't aware of what's going on.  (((hugs)))

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Tekiela, my dear, I'm so sorry to learn of your mother's serious illness, and I certainly do understand and appreciate your concerns. I have alerted my own contacts at Hospice of the Valley (mine happen to be in the Bereavement office) as to the content of your post and the nature of your concerns. I am told that they are doing all they can to identify the team in charge of your mother's care so they can address your concerns directly. I also encourage you to contact Hospice of the Valley, identify yourself by name, and ask to speak to the Case Manager on your mother's hospice team. Anne has directed you to some excellent resources that I would recommend as well, but as she also stated, I know that a member of your mother's hospice team will be more than willing to sit with you and answer any questions you may have. Please make that phone call as soon as you can do so!

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Anne thanks for the link on morphine. It brought answers to questions I pondered myself.  I lost my mom to cancer when HOV was new here in Phoenix. She was  given something called Percodan at the end and in the last two days of her life, I felt the drug had made her incoherent. I also knew she was in pain so I accepted it. Almost five years ago, my wife went into HOV's Sherman house and she could articulate the pain she was in. They gave her morphine. She spent five days there and was incoherent for the last three. One thing I noticed was how the hospice nurse would just come in and watch my wife's face. She was keeping an eye on wincing. I agreed that if she was in pain, ease it.  Your link had a question in it that got me thinking. Barbara Karnes asked "What would you want?"  Now I don't and never have taken drugs but if I was dying, and in pain, I would want to get it.    Over the last four years, my dad and step mom both left this world in Hospice of the Valley homes as well and the nurses did the same to them, watching for signs of pain.  Perhaps it's a double edge sword because it does effect near end communication but eases the pain. However we look at it, those of us watching the last days never ever walk away without questions.  Sometimes those questions get wrapped up in grief itself.

I have come to understand after watching four people leave this life that it was so very much the same at the end. Each time I approved the pain meds and each time I saw the effect. Never shall I get used to it. I just need to find a way to leave  guilt at the door.                                                                                                                                                          

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My MIL had morphine when she was dying of cancer, but she needed it to get through the pain...at the end, even that did no good because her blood pressure was nonexistent and wouldn't push the morphine into her system.  We make these choices based on what we feel is best for our loved one.  We have to put them ahead of ourselves and to me, the pain they're in trumps last conversations, which is for us.  I wouldn't want my loved one suffering if I could help it.

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  • 3 months later...

I think the hospice that gave my mom meds overdid it one day and caused her to die sooner than expected....Just because she acquired hiccups one day and was a little agitated when the nurse was visiting, she was given double doses of morphine and Ativan, and, as a result, she died the next day.  I think these nurses are just trained to drug up the patients, just like I've heard they do in the nursing homes.  She could have lived longer if not for that occurrence and I blame myself for not stopping that nurse.  This hospice was and is bad news.  Be wary of who you hire in your home.

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I don't think a blanket statement can be made because people have wonderful experiences with them...and horrid experiences, and it depends on who the nurse is, just as with anywhere.  I dread hospitals because of my experience, but that doesn't mean all hospitals are bad, but the one I went to a year ago doesn't have a good track record.  Wish they'd spent more on hiring nurses and less on their art work.

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I disagree kayc....many hospices (I did not say all, mind you) overmedicate, as do some hospitals.....The problem is, kayc, that there is not enough COMPASSION for the elderly and especially elderly that are ill.  We, in this country, should take a look at other countries (Japan, for example) that treat their elderly much better.  And concerning many of the nursing homes in the U.S., just visit some of them if you haven't already, and unless you are void of any empathy, you will throw up from seeing the conditions of living there!!! 

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Not sure what you disagree with me about...

We had a great experience with hospice with my mom.  I HAVE visited nursing homes and care centers, my own mom was in a dementia care unit.  I will say I don't think having your loved one in a facility is a substitute for family involvement.  I HAD to visit often AND get involved with her care.  We are their voice when they can't speak for themselves!

I'm sorry this has been your experience.

As for hospitals, it was in a hospital I was nearly killed a year ago because they over anesthesized me and my heart stopped during surgery because of it causing them to have to restart it and I stopped breathy countless times for hours, then they lied to me about it when I questioned them...yet I overheard them talking about my case and I saw the bruising on my chest from it so I knew better.

 

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I'm feel bad for you that you couldn't be there with your mom all the time...Even tho she had dementia, I'm sure she missed you deeply when you weren't there...You don't know what goes on when you're not there...As for hospitals, there you are, you can't trust them either..

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I guess you have to understand dementia. You could visit my mom and five minutes later she didn't remember.

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I agree with you, sg.  Sick people are much better off at home with family, not at nursing homes or in-patient hospices.  It's all about the money.  I've had similar experiences with incompetent staff and some doctors who wrote high dose prescriptions that were not necessary.   I think you should commend yourself for taking care of your loved one at home...not many people have the patience and determination to do so.   And, yes, people with dementia do remember visits from family (albeit subconsciously at times).  At the very least, the feeling of emotional comfort is there for one to two hours after family visits, even if they don't "remember".   It's similar to when a person with dementia listens to music they formerly enjoyed.  Even if they do not remember the name of the song or the artist, that comfort feeling stays with them.  Family should try to be there for their loved one 24/7, not just "visit".

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In our situation, my mom wouldn't LET us help her and she was a danger to herself.  She wouldn't go to the doctor and wasn't taking her medicines (cholesterol-lowering, blood pressure, and diabetic meds). Taking her to court to get the ability to help her took a year.  Meanwhile she'd walk out in front of traffic, forget to wear her pants to the store, etc.  They ordered 24/7 lockdown for her for a reason!  She reached a point where she could no longer walk without falling (part of Lewy Bodies Dementia).  She quit eating.  I'd try to get her to eat, she just wouldn't do it, so I got her on Ensure.  Please don't judge families that use facilities, sometimes they're necessary as they are able to provide help around the clock, etc.  Plus she was a danger not only to herself but to others.  I didn't want her to set the house on fire or kill my dog (she'd threatened to).  It requires special facilities that have the kitchen locked up so they can't get to knives, scissors, etc., most of our homes are not built that way.  Child-proofing your home is one thing, it's quite another for an adult!  Everyone's situation is different and we have to do what is in the best interest of them and our families, and sometimes it's not a one-size-fits-all answer.  Sometimes family members still have to work or take care of babies, or have no relief person.  My mom reached the point where she could no longer go out. It's painful enough going through this without people judging you for not taking care of your mom at home (yep, been there!).  I could say more but I'll stop here.

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