RSS Feed Print
Hospice Care question
shirleywhirley
Posted: Monday, February 2, 2015 2:56 PM
Joined: 10/29/2012
Posts: 105


I am working part time now for a woman who owns a care giver company. I work in the office. This woman owner has been in this business for 25 years. I also used her caregivers when I thought my mom should not be alone for the day.

So this woman who owns the business also knows my mom. We were talking the other day and got into the subject of hospice care. She said, "Well, hospice actually kills patients. They won't tell you this but that is their job." I was so shaken by her statement that I began to cry. My mom was under hospice care the last few days of her life and I know they gave her morphine because they claimed that dying is sometimes painful and they wanted her to be comfortable. This woman who owns her caregiving business said that dying is not painful they just tell you that.

Can anyone shed some light on the hospice situation? Is the purpose of hospice really meant for them to make the patient dye? I hope this isn't true!! I feel awful that I allowed them to give my mother morphine during her last days on earth. She had contracted C-diff and had profuse diarrhea.


KML
Posted: Monday, February 2, 2015 4:28 PM
Joined: 11/30/2011
Posts: 2105


shirleywhirley:

The statement that woman made to you is totally irresponsible on her part and inaccurate. I don't know the reasons why she would say such a thing to you, she had to know it would distress you to hear this. The purpose of hospice is not to kill, but to make a person comfortable. My father's passing was not an easy transition, my father suffered a great deal, so this woman saying that death is not painful, is really making a very uninformed statement. Death may be peaceful, but not always and it sure wasn't in my father's situation. We had just started hospice and he went into a downward spiral so quick, hospice didn't have a chance to give him all of the meds to calm him and soothe him, I wish they had, so that he could have been comfortable and not suffer. I still think about his last day and it haunts me, truthfully. Everything I did for him during all the years of caring for him was foremost, comfort and no suffering. In the end he suffered a great deal and I can't tell you how bad I feel that hospice did not have a chance to fully help him.

Shirleywhirley, don't take to heart what this woman is saying. She has a business of caring for people, and maybe the thought of hospice seems counterproductive to her business. Maybe she feels the longer someone lingers on is better for her business. Maybe she would discourage someone from seeking hospice so that she could continue to be the caregiver. I hate to think that may be the reason she is saying this, maybe she's just ignorant and uninformed. Anybody with an ounce of intelligence should know not to make such generalized statements about dying. A person's death is an individual process.

I'm sorry she upset you, that was callous and insensitive of her to do.

I had a caregiver at my father's facility say to me, not to start hospice for him, this caregiver said, hospice would kill my father. I could not believe what this person was saying to me. Here was a facility, where the caregivers were so ill-equipped to handle my father, and yet they failed to tell me how much weight he lost in a month's time, he lost ten pounds and each time I asked them how is he eating, he seems so much thinner, each time, they said he was doing just fine. They got to the point where they ignored him, ignored his crying, ignore his cries for help, they put him on the back burner. I contacted his nurse practitioner and when she came and saw him, she told me it was time for hospice. When the hospice nurse came to evaluate him, I asked him what he thought of the care my father would need, could the caregivers in this facility handle it, he told me emphatically no, not from what he saw. When he came to see my dad, my father was lying in his own waste and no one bothered to change him or check in on him. I was in the process of trying to move my father out of this facility and back home where he could die in peace and comfort and have someone who would care for his needs. It was too late to move him, he was so fragile. He suffered and some say he went fast, but to me and to my father, it was an agonizing process. My biggest regret in my life and something I will not get over, is my father was not provided the care and comfort he deserved, I trusted the care staff and they let my father down and ultimately I feel I let him down.


shirleywhirley
Posted: Tuesday, February 3, 2015 12:07 AM
Joined: 10/29/2012
Posts: 105


KML thank you so very much for your reply. Your comments are so much appreciated. The thought did cross my mind that this business owner made her statement because it would be counter productive to her business to agree with hospice care - that a person who lives past their comfort level would profit her care giving business. At first she didn't know my mother was in hospice until after she made her statement and saw my reaction. I don't care for this woman. She is very aggressive, and rude by nature. My employment there probably won't survive.

I am touched about your experience with your father. It was a constant worry for me every day that my mother was in assisted living that she would not be taken care of and respected. I visited her every day and there were a few times that I was disturbed about things, but nothing too serious. I didn't care for the administrator at all, as she was arrogant and would not return my phone calls. I suffered so much for my mom and cried a lot for her. There were so many days that I would tell myself that I would pick her up and bring her home. But the thought of working full time with no help scared me to death as she was a constant worry for me. As you may recall she would constantly call the police and tell them I killed our pet dog.

I am hoping we can find peace. I have found some peace and love the quietness of my peaceful home.
I love hearing from you from time to time, you help me so much and I hope you find comfort in that.

Oceanbum
Posted: Tuesday, February 3, 2015 8:30 AM
Joined: 3/11/2012
Posts: 433


Hi shirleywhirley,

My Mom was on Hospice for about 7 months and my Dad was on Palliative Care for just a few days. Never once did I feel like they were trying to kill my parents. They did everything they could to keep them comfortable in their last days. It's my understanding that's what Hospice and Palliative Care are designed to do. And they did a wonderful job of doing just that.

They were in completely different environments with completely different situations. Mom was in a nursing home, had been there a year with COPD and Dementia. She had been living with COPD for over 20 years and had been diagnosed with Dementia for probably about 8 years. Dad had been living at home, taking care of himself, was in what seemed to be excellent health and all of the sudden began losing weight and not sleeping. He was diagnosed with cancer throughout his body. And from diagnosis to his passing was 11 days.

The Hospice staff monitored my Mom's care and made sure she was well cared for. I am eternally grateful to them for what they did for her when we couldn't be there. Of course, my Dad was there every day so there was always somebody there.

My Dad was on Palliative Care. They did everything they could to keep him comfortable after it was determined that surgery was not an option for him and chemo would make him sicker if it didn't kill him. So he had no options. He chose no chemo and asked to be made comfortable. My brother and I stayed with him the first night he was on the Palliative Care unit. They had transferred him from a regular room that day to the Palliative Care unit. It was late in the evening by the time the transfer took place. They hadn't gotten the meds dialed in yet. It was a LONG, LONG night. He was in so much pain. It was awful. I was glad we were there for him. But I told my brothers I couldn't do another night. That night still haunts me. It turns out that was the worst night. After that night they were able to get his meds worked out to where he was kept completely comfortable the remainder of his days. I know just from what I saw THAT night to the change I saw over the next few days just what Hospice and Palliative Care does for the patient. They kept my Dad comfortable and kept him from being in that awful, haunting pain I saw him in that night. They did exactly what he asked them to do for him.

I hope that helps you in some way. Hugs to you. I wish you peace.


shirleywhirley
Posted: Tuesday, February 3, 2015 9:41 AM
Joined: 10/29/2012
Posts: 105


Thank you Oceanbum. This website has been a wealth of information for me. When I have felt my lowest, members on this website have lifted me up, when I wanted some information about something members have informed me.

I am so grateful to everyone who has comforted me. It truly does make a difference for me to read your replies and posts.

Oceanbum and KML, thank you again and I do feel more peace now after reading your replies.


Much peace to all and we'll keep in touch.


KML
Posted: Tuesday, February 3, 2015 11:47 AM
Joined: 11/30/2011
Posts: 2105


We've all been through so much, we'll be here for one another. Both of you take good care.
Oceanbum
Posted: Tuesday, February 3, 2015 2:22 PM
Joined: 3/11/2012
Posts: 433


You're most welcome, shirleywhirley. This site has been a godsend for me. It has helped me thru some of the most difficult days. The people here (KML included) have helped me in ways they may never know. I am so glad I found it and joined when I did.

"See you" soon!!


Jo C.
Posted: Wednesday, February 4, 2015 9:45 AM
Joined: 12/9/2011
Posts: 11601


Hello ShirleyWhirley; I am truly sorry for the distress this unfortunate woman has caused. All preventable and certainly not in the realm of truth. She KNEW you had Hospice for your mother and yet, she STILL said this to you? Dreadfully inappropriate and of course, she is wrong.

You know me, but I don't know if you know my background. I am an RN who was initially a hands-on supervising RN on medical and surgical units; I got my Masters Degree and spend many years as Administrator of Patient Case Management; and I also had a private consulting business monitoring quality of care for medical providers which included a huge Hospice Care organization.

I can honestly tell you that both from the professional AND personal level having had my FTD mother and AD step-dad aligned with different Hospices; that what that woman told you is not only purposely cruel, it was grossly inaccurate.

In fact, the entire thrust of Hospice is to assist the patient to have the best quality of life for the time they have left and there are instances where very ill patients improved after having been placed on Hospice secondary to excellence of care and consistently addressing dynamics that had not yet been addressed.

Little known; but in some Hospices, patients have been on service one year and even up to two years! The medical need must be there in the documentation, but yes; I have seen this.

Most of our LOs stay on Hospice is far less due to the extent of their disease by the time the actually get to Hospice; in fact, it is well-known in the healthcare industry that Hospice should have been called in far earlier; but many folks including doctors can misunderstand and wait until the terminal event is right at hand or very near. At that point, in most cases, all that Hospice can do is to provide basic comfort, pain and other symptomatic relief, and terminal care to keep the patient comfortable. This too is a blessing.

Hospice does come in with multiple different approaches and they must, as mandated by law and standards, be patient specific. If one does NOT agree with the medication plan, then the family can indeed have all the input they wish including refusing that med and asking for something a little less strong, etc. It is a TEAM effort and the family is the most important part of the team.

No; Hospice does not purposefully kill the patient. Your information source is woefully ignorant and yes; it may be that Hospice stepping in has lost her some of her business and I would question whether she is highly biased and angry about that. Goodness; if Hospice's purpose is to kill the patient, how would THEY make their earnings? There'd be nobody left!

Rest assured, all is okay on that front. It is nice that you are getting job experience to put on a resume, but I too have the same feeling that you do; this job is probably not a very good fit for you. You're too smart!

How are YOU doing dear Shirley? Have you been able to begin to work through the worst of it? No timetable, it all goes in its own good time.

I send you my very best thoughts and best wishes,

Johanna


shirleywhirley
Posted: Wednesday, February 4, 2015 8:34 PM
Joined: 10/29/2012
Posts: 105


Thank you Johanna. You really gave me all the great info I needed to understand what happened to my mom in hospice. I just second guess everything that happened to my mom and how I handled her care. I rethink everything in a deep way and wonder how she felt at every step.

I greatly appreciate your time and the way you educated me on hospice.
As far as how I am doing - well I miss my mom so much as we were very close. I think about all the things we did and cannot believe she is really gone forever. I do feel lots of peace now which is amazing, but things were very unnerving to me the last year of her life.
People like you and others on the alz website have saved me. So I thank you and the others who reply to my posts.

Jo C.
Posted: Thursday, February 5, 2015 9:57 AM
Joined: 12/9/2011
Posts: 11601


I certainly do understand and can imagine how much you miss your dear mother. I sometimes, once in awhile, find myself speaking to my Mom; just a bit to say that I miss her and I do not find that at all odd. It took me some time to stop reaching for holiday or special greeting cards to send to her. I'd be in the Hallmark store and my hand would automatically reach for the "Mother" card, and then I'd remember . . . .

No matter what, we remember the love.

Unfortunately, I all too well recall some of my failings and wish I had done some things very differently or at least had much more knowledge in the beginning. However; we are human beings which means we have flaws, but the love and the care far outweigh anything we see as a deficiency.

You were such a loving and compassionate daughter to your mother, and your relationship was very special indeed.

A big soft hug is coming your way,

Johanna