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 On Our Own Terms: General Discussion [all categories]
 The Issues
 Hospice and Palliative Care (Page 2)
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misskittie Member Posts: 3 |
posted 09-14-2000 02:08 AM
  
quote: First, let me say I am sorry that your mother is dying. I lost my mother 4 years ago this July. Breast cancer that spread to her brain, which resulted in 4 tumors, giving her 6 months to live. I understand what you are feeling. I only recently admitted to my siblings, having the same types of feelings you are expressing. I too, felt selfish, even guilty, for letting that thought (let my mom die) even cross my mind. I now understand that it is natural. You do not want to watch your mother suffer, wither away. As much as it hurts to see them go, you reach a point where it just seems death is better. No more suffering for them, you can grieve because they are gone, and quite honestly I felt relief personally when Mom passed away, because I knew her well enough to know she wouldn't have wanted to go on very long in the condition she was in, but also because I was exhausted and emotionally wrecked, having taken on the role as one of her major caregivers. Let me say this, no matter what thoughts you have, or feelings you experience, none of them are "wrong" or "awful". And during such a time as this, my advice would be...remember all the good times, on her good days, take a second to store a piece of conversation or mental picture. On bad days, know you will get through it, and you are doing your best. My thoughts are with you and your family, sincerely.[/B][/QUOTE] My mother also was diagnois with breast cancer in 1997. In 1999 the cancer had spread to her lungs and in March of 2000, to her brain. She passed away in June of this year and there was a sense of relief as she let go of life. I am her eldest daughter, 29 years old who moved into her home to be her primary caregiver. I moved my two sons, 9 and 4 years old, along with my child care business. This was a difficult thing to do as far as taking care of my mother, but my sister, who operated her own hair salon downstairs from my mothers home, and I refused to place my mother who was 46 into a nursing home. I really wouldn't have been able to handle the end of her days without Kaiser-Oakland Hospice team. My mother had the best nurse in the entire world and her name was "Debra The Nurse", as we affectionately called her. My mom did a wonderful job at preparing her family spiritually and emotionally for her death, she was speacial. She was able to maintain her hurmor and joking attitude while in so much pain. I told her on several occations that I wish that I could relieve her of some of the pain she was going through, I felt so helpless as I watched her over the toilet after chemo. I wanted God so much to take her out of that pain, but on the other hand give her strenght to endure. At the last day of her life, she still continued to be a mother because even though she wasn't responding to us, she could hear everything around (she was nosiy too). Her nurse explained to me that my mother was only breathing by oxygen and that I may want to consider turning off the oxygen. Well, I didn't want to make that decision by myself so I wanted to wait for my sister to come back. My mother heard this converstion going on around her so when I went out of the room to converse with my aunt, as I came back into the room with my mom, she had passed away that quickly. She didn't want me to make a call like that alone, so she decided for me. After the initial crying I felt relieved that she could still be "Mama" in the end. I love her and miss her,but I know one day I will see her again in "Paradise". [This message has been edited by misskittie (edited 09-14-2000).] |
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deserthunter Member Posts: 2 |
posted 09-14-2000 12:59 PM
Sanpep: It sounds like you need help in managing your mother's care as well as psychosocial intervention for yourself and your family. Your feelings are not uncommon, in fact they are quite COMMON. Nobody wants to see a loved one waste away, be in pain, or lose their dignity by dying a slow and miserable death. To wish for them to die is NOT a sign that you are 'thinking only of yourself' or that you are an 'ungrateful child'. I have worked in hospice for almost 7 years, and I've seen family members experience just what you describe, more often than not. When it gets to the point where the loved one you once knew is no longer "there", it is unbearable to watch them hang on . . . you really must remember, there are many who understand exactly what you are going through, even though it may seem like you are all alone in your despair. It sounds like you need to consult with your hospice nurse or social worker. If you feel they aren't meeting your needs adequately, or at least assisting you to do so, talk to them and let them know this. It could be that they don't see what's really going on in your situation, even though it is blatantly obvious to you . . .
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Pumpkin Member Posts: 2 |
posted 09-15-2000 03:54 PM
I lost my life partner last December to lung cancer at the age of 51. As we realized the chemotherapy (2nd round) was not working and decided not go on with another tpe, his HMO suggested hospice, and fortunately their hospice was part of his medical benefits. (I had planned to reseach it and pay for it if neccessary because he HATED the hospital and I had every intention of trying to keep him at home). For us it was a very positive expierence. I was assigned a wonderful nurse and although he deteriorated very quickly (his kidney and liver failed), and I did not use their extensive services for very long, it was truly a blessing. They provided equiptment, medications, home aid, 24 hour call-in service that I often used when I wasn't sure what to do or what was going on, social workers, spiritual counseling, music therapy... The most important thing is he was HOME with me and not in any pain when he died. And now they provide a regular bereavement group to attend (and I don't even have to belong to their HMO, which I don't) which has helped tremendously after the fact. I realize now we were blessed, and he was able to leave this life in the best possible way under the circumstances. |
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PamInOhio New Member Posts: 1 |
posted 09-16-2000 11:43 AM
quote: My husband was diagnosed with Metastatic Adeno Carcinoma (Pancreatic Cancer) September 1999. He passed away February 3, 2000. Unfortunately I had no choice but to involve Vitas (Hospice of Cincinnati). I had no problems with the insurance coverage and the Nurses Aides were God's gift to my husband. The problem was the Team Lead Nurse, the nurse that spent the nights with us and the Champlin/Social Worker. None of these folks had the compassion nor training needed to deal with the dying. I promised my husband that I would honor his wishes which were to die at home, not talk about his funeral before he died, not to talk about him as if he were dead before he died, and not to be drugged so much he would be a "vegetable" and finally NO HOSPICE. I could not fulfill his last wish, because I am not a medical professional and needed their expertise. The other three items were violated by these so called professionals, even though I expressed his wishes several times over several days. I finally kicked them out of our home 3 days into his care (except for a once per day vital signs check). |
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pam4bina New Member Posts: 1 |
posted 09-16-2000 07:50 PM
quote: I work in palliative care in Canada. In our organization no one can do our work until they ask to do it and are screened for psychological problems. The nurse you had was not fit to do her job. I suggest you call her boss and tell them your story and also send a letter of complaint to your state licencing board for nurses. You all deserved better. I feel it is a priviledge to wash and clean my dead patient. I feel it's the last thing I can do for him/her. Would you really have wanted that nurse to touch him? The last hands that touched his body was yours. I hope that will give you some small measure of comfort. I am horrified the hospice has not had followed up. Again, phone them and share your feelings. If you don't get a satisfactory response, spread the word about that hospice so others won't have another bad experience like yours. Sincerely, Pam |
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Pamela Hoskins New Member Posts: 1 |
posted 09-18-2000 12:13 AM
I got a chance to view Mr. Moyers show today and I was in tears. I am an LPN now but when I was active in Hospice care I was just a Home Health Aide about 2 years ago- which meant that I would be the one person that would spend an enormous amount of time with a terminally ill patient and their families. People have asked me the question why would I want to spend time with such a depressing situation-I inform them that, first of all, I do not think of the situation as being "depressing," because you, yourself, have to understand that death is a part of life and you have to be, somewhat, comfortable with this approach because it would be very hard to go into this type of situation without an "open mind," so to speak. I always felt priviledged that these Eventhough I felt this to be a rewarding experience to me I also understood being in such a capacity can be, and often was, emotionally draining. It was very In closing, I believe the introduction of the Hospice is truly a great concept because,as it was stated in the film, no one should have to go through this time of their lives alone. Thank you. |
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Lynn e New Member Posts: 1 |
posted 09-19-2000 01:52 AM
quote: I had only known my husband for 3 years and was married for 1 and a half years, when he passed on Feb 14, 1997. He had a brain tumor at the age of 24 in 1979 his right tempral lobe, a low grade astrocytoma. All but 5% had been removed at that time. He had told me this before we got married,which is beside the point when you love a person. We were married on June 24,1995, an unexpected gift from above came to us on July 17, 1996, our son William. In September after a Dr. gave us a run around about my husbands MRI,that he would have yearly, we went to Shands teaching hospital, where my husband and I was bluntly told this thing is going to kill you. We went to that hospital that day with the thought that somehow they would be able to remove this thing. The tumor was so aggresive,and had begun to wrap it's self around his brain stem. We came home and I called for home health care, then found hospice. I wasn't about to let someone else take care of the man I loved, my other 3 children's step-father,father of his other son and father of our God sent son. He was bedridden from October 1,1996 until February 14,1997. I thank God for Hospice, my husband was able to have us lay with him,hear our son say Dada for the first time and though he couldn't see that well, I would lay our little guy on him and he could tell how big he was getting until he was 7 months, and I got to film them together all those months. Hospice would come in and help takecare and make my husband as comfortable as possible. Everyday I could count on someone from hospice to come to our house. They also helped me by talking to me each day and letting me know what usually takes place at certain times with patients with brain tumors. I was told by a Dr. that there was no medical reason for his being here the last 4 months that he was with us.I am so happy that he was able to spend his last days with us and die in my arms on our bed, and not a strange, cold place. No feeding tubes to prolong his agony, which is no more,only joy.
[This message has been edited by Lynn e (edited 09-19-2000).] |
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excuzmeplease New Member Posts: 1 |
posted 09-20-2000 01:35 AM
I thank PBS for their series,"On Our Own Terms." A special THANK YOU to the families who opened their hearts and shared with us a time that was very, very difficult. The series was educating,yet very sad, but most important is that it AWAKENED ME. I've read the replies that were posted on this site following the series and I'm grateful to those who shared. I was angered when I read of the family who endured a hospice who employed people who were uncompassionate,unprofessional, untrained, CRUEL! To hear of the final insult,"Change his clothes before the funeral home arrives!" My God,that boarders on being criminal. Equally as cruel was the Doctor who said, "I cannot prescribe stonger pain medication because he may become addicated!" The doctors statement was almost comical had I not cried first. My question is, "What can I do and what needs to be done for change?" |
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marlene New Member Posts: 1 |
posted 09-28-2000 07:39 PM
I am going through the same thing as you now. My mom has lung/brain cancer that has spread throughout her body. Now she is having bad days and I find myself feeling guilty for praying for her end. My mom was just diagnosed with the cancer 3 months ago because she had no symptoms. It is heartwrenching to watch her deteriorate the way she has. please feel free to e-mail me. I live in the next town from you N.A. quote: |
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Christopher May Member Posts: 4 |
posted 10-15-2000 12:38 AM
How does one prepare him/herself for her/his own death, or for the death of another? What comfort may there be for the dying in the insights of others about dying and death and life after death? A number of people who had recently died chose Carolyn Stearns as their channel for something more that they wanted to say to those still living. In some instances, Carolyn was able to convey the messages to relatives, who attested to their authenticity of voice and credibility and were greatly comforted by them. Others have been reassured by the messages as they contemplate their own death. Carolyn has collected the messages in her book "Spirit-Walking". If these messages might be of interest and value to you, please reach us at Christomay@aol.com. Thank you. |
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