Hospice Bad Experience-Update
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Tommy……Hospice provides an incredible service to people and by all means, do consider your options. Lainy’s experience is not the norm however; bile duct cancer can take on various forms in the end stages. We have to be assured that our patients are free of pain and all other symptoms are addressed. I would interview with Hospice. You would want to make sure that a physician is available to change or enhance the order if so necessary. Also, you would want to inquire whether this particular Hospice personnel is familiar with gastric. cancer symptoms. You are armed with quite a bit of information already therefore, you are quite informed. And, as mentioned, reach out to the members on this site.
Best wishes,
MarionDear Tommy, I need to clarify one thing for you. And Susan can speak for me any time. The home care Hospice was wonderful!!!!!!!!!!!!!!!!!! I would do it all over again. The only thing different I would do is keep him home until the end. Then I would see to it he got his pain meds! Take your time and you will make the right decisions with your doctors help. We are here for you as well.
Dear Tommy – A lot of hospice care is absolutely wonderful and many have benefitted so much. Lainy had a horrible experience and we all feel badly about that, but Lainy stays on top of things and you will too. In many cases, hospice comes into your home to provide care. In other cases, your loved one stays in their facility. There are many ways to manage hospice. Lainy did it at home for quite awhile. I should let her speak for herself. In any event, you can stop hospice any time if you are not getting the proper care. Tommy, thank you for sharing how you feel. It is so hard and yet, during this battle, we need to let those feelings out and as you have found, on this site, we really can share truthfully about how we are doing, what we are afraid of, what is working, etc. Hang in there and you will make the right decisions along with your wife. While you are doing that, we will be here. Perhaps if the doctor said different options, maybe there is something besides the gemzar or hospice. Let’s hope for that. Blessings, Susan
Dear Lainy and everyone else, Judy’s cancer marker is continuing to rise. I think the next time we see her Dr. he may suggest hospice. He has mentioned it before but Judy continues the fight. He has changed her chemotherapy around several times, eliminating the cisplatin and using only gemzar. The gemzar routine seemed to be holding things in check until the last two treatments. Dr. said we would look at different options if her cancer marker continued to rise. I am thinking the only option left is hospice. I am worried about the kind of care she will receive after hearing Lainy’s story. I have heard bad things before but with dear Lainy it hit closer to home. I have a pretty short temper when it comes to my family. Reading Lainy’s posts and others I have learned a great deal about patience and caring. I don’t think anybody cares more for their spouse or loved ones than I do. I just don’t like to think of anyone mistreating my wife. Like I always tell my girls,” do you want me to kick their #*% “. Lainy, Thank You for sharing, I have a hard time with this. Tommy
Thank you, Lainey and Marion, for your kind welcome. I am a bit concerned about using the sugar; Siggi is diabetic and in addition, I think I would need to check that one out with his Oncologist since at this point I still know so little about pancreatic cancer and what would be good and not good. Probably anything he can tolerate. The pineapple juice did work well. He got the hiccups back a little bit this morning, but I haven’t heard anything nw in about an hour. He is ornery, though, and I do not want to get ornery
Lainey – you and Ted were truly blessed that your blended family actually was one. My father’s 2nd wife and her family, for reasons I never could quite understand other than perhaps we aren’t in their “league” (social and economic standing), had no interest in being a family. My father and they were all quite close; just didn’t spill over. I feel horrid that when I heard she had passed away this past summer (my father left us January 2007) in a very round about way, my first call to my sister was “Ding Dong the Witch is Dead”. SSSSSOOOOO not like what you and Ted had and I just think that is grand!!
Have a Blessed day!
Hello Janet…..One of the Gemzar side effects is just that: hiccups. I addition to Lainy’s suggestion I recall Tom’s suggestion of using one teaspoon of sugar. It seemed to work for Ben. It is worth a try.
Good luck,
Best wishes,
MarionWelcome Janet to our wonderful family and you are so very sweet yourself. I hope the Briosche works as it did for Teddy. I sued to feel so terribly bad for him as it sounded just awful and he would get so worn out. remember, try it once, if it dosn’t work, try it again in an hour.
I am doing ok. We had our beautiful Service Friday and his kids and my kids have been hanging here all weekend. Wishing you much good luck and come visit us often!Lainey,
I actually came upon this site and you because my significant other has been experiencing horrible hiccups and after traditional cure methods didn’t work, I googled Gemzar and hiccups. I saw some of your Thanksiving postings and kind of fell iin love with you and your attitude. I am so sorry for the loss of your loving and loved Ted and hope for your own healing and peace. I think you two had a wonderful and loving life together.I am so glad, too, that Ted found a way to visit you and to make contact. I pray that I will not be soon looking at that aspect in my SO’s and my life together but reading about people like you makes me have something more to hold on to. May peace be with you.
Lainy, I have been following this posting because of my nursing experience and the thing that kept coming through in my mind was how fortunate Teddy was to have had all that wonderful time with you and your family and friends. You had so much deep understanding of Teddy, his disease, his needs and still had time to share your life with all of us. A remarkable wonderful woman who gave Teddy everything he needed with only one bad episode to mar an otherwise perfect caring.
Few times (very few) have we encountered problems with hospice either, at the person’s home or, at their facility.
But, these very few problems should not exist.
If something does not feel right then most likely it is not right. Therefore, make sure that your loved one is made comfortable. If you do not see an improvement, insist on the appropriate steps to be taken. If all fails, call your physician and ask for your loved one to be admitted to the hospital. (Not the ER.)
We have only one shot at this and is has to be right.
Love to all,Marion Schwartz
Director of Advocacy
The Cholangiocarcinoma FoundationLainy it makes me ill too. You remember my husband has the worse unmanageble pain from this cc and was at an 8-9 every day for three months and went through nerve blocks and two morphone pumps and they were trying everything. we had no hospice facilities so they could visit the house. The would PLAN to stop by every two days, if you called cause you needed help or answers , she may say she’d stop by and hours woudl go by HOURS. no call. I would have to call and ask when she was coming. I would almost tell her what i needed, pads for bedsores (oh and dont’ worry, I;ll get someone to help me apply them) and sponge swabs to keep mouth moist..got bags of those delivered eventually. Overall, I was hospice to my husband every minute. I also said since he couldn’t communicate can we up the dose on morphien to make him more comfortable cause he can’t push all his bolus buttons, I had to do it every 15 minutes for one and every 3 hours on the other one. Shoot he wasn’t gonna get up anymore, catheter was in, too weak. Might as well let him feel nothing right? Well they too said they can’t do that unless he needs it . HELLO HE has like two days left !!! Lainy, the only thing I hold on to is that he died at home in great care, with me. After these stories, I am glad they didnt’ have a facility. I know now what to share with others on how care SHOULD be. The morphine pump company and the in home nursing care seemed better than hospice. I am still suffering memories of Tad’s last days and can’t get them out of my head. Someday I hope only to see him as we were and as he was before the cancer, cause it is so painful now for me. I wish you a special funeral day. One thing I learned that has worked for me on big issues that take over your mind, is pray to God and ask for memory healing for those hospice bad feelings and maybe you will wake up one morning and the weight will be lifted. Worth a shot.
Dear Lainy,
I read your comments about Teddy’s last few days with tears in my eyes…
I am a children’s nurse and work in a children’s hospice which I know is a very different facility to an adult hospice,but we do look after children in the last few days and hours and sometimes weeks of life. Some suffering from cancer, many others not.
One of our primary aims is pain relief, comfort and creating treasured memories for the children’s parents and families… The dosages and requirements in the terminal phases of life are so much higher than would be deemed ‘safe’ in other areas of nursing practice. Particularly with cancer sufferers the patient can become opiate tolerant meaning it takes much higher doses to achieve pain control….
Like Helen has said I would suggest you arrange to meet the Director of the hospice at a later date. Might it be possible for someone to accompany you to support you? Maybe a hospice doctor may also be invited, just a thought.
Wishing your peace and strength for Friday as you say Goodbye to Teddy.
Thinking of you,
Katie
Lainy,
I remain dumbfounded by the hospice experience you describe. My dad was in a Hospice of the Valley facility and the care was wonderful. When you say “they were following orders” this leads me to believe it may be a management issue with how the staff in that particular facility are trained.
You will honor Teddy by assuring that the proper people review his care and listen to your concerns. But like many others have said, let the positive memories be your first thoughts.
Bz
Oh, thank you Helen for your comment. Actually I had already decided that is not the place nor time. I would never do that to Teddy’s memory. I have a feeling she wants to come and then set up a meeting at some time. I understand she is just the most wonderful person. I, myself am not sure why she wants to come. Before she married Barry Goldwater she was his Nurse, so she does come from a Nursing background. I worked too hard for Friday to mar it in any way! Thank you.
My dear Lainy
That last episode of Teddy’s life is so hard to read about, and my heart just breaks for you that, after all your wonderful care of your special man, that had to happen. However, always looking for the positive in things – if anyone is the right person to take up this problem and get it sorted it is you, and then others will not have to go through what Teddy did, and the mental torture you feel now.
Another thought – and I add this out of concern for you, so please forgive me for raising this if you feel it’s an inappropriate comment – but Friday will be such a special day for you and your family and friends, full of love and loving memories, and if the hospice director is there and you talk about and relive that awful hospice experience then maybe your special memories of that day, too, might be spoilt …
With love and positive thoughts always
Helen xx
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