A place to talk death and dying issues
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I just started the most amazing book. Once in a while, I get in the mood for a cancer memoir. I found this just Google searching. Hit the jackpot. The Unwinding of the Miracle by Julie Yip-Williams.
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Lita,
Love to you.
Tina
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Going on to hospice soon.
I can't take the pain anymore.
But do I do it institutionally or at home?
Thoughts?
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If I can afford it, I will do a hospice facility. (You'd think I would have checked this out but I have not.) I don't want my house to be remembered as the place I died. I don't want my family traumatized in their home.
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Lita: Sorry for your pain. I have three very good friends who have chosen hospice at home. The care & response has been amazing and worked very well for all three of them. We were able to sit with them and hold their hands as they transitioned - a peaceful & moving experience.
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Lita, my MIL had home hospice but when it came time, she was taken to the hospital, where she died peacefully within the day. The hospice nurses were amazing and helped with the families emotional issues as much as the patient. It helped us all prepare for the transition. I told my DH that is exactly what I want for myself. Sending up prayers for you, dear Lita.
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I've followed your story for quite some time, Lita, and I've always felt a connection to you. I believe you said your husband is Hawaiian, and your DD is hapa. Same with me. I was married to a Hawaiian, divorced now, but we have two children. The way Hawaiian families work, that makes us practically cousins. Even if it is just by marriage. 😁
I'm so sorry to hear that you're at that point of considering hospice. That kind of pain is so wearing. It robs you of every bit of joy and peace, and so often leaves nothing but despair In it's wake.
My mother had home hospice care before she died. My sister and I were able to care for her ourselves. It was hard as hell, but like MinusTwo said, an amazing experience. My mother was able to stay in the home she loved, mostly pain free, for eight months,. She was surrounded by her family when she passed.
It helped that we had such an incredible hospice nurse. Before she died, my mom thanked the nurse, Donna, for making hospice fun. We're still friends nine years later.
I hope you are able to find relief soon. Lita. Sincere best wishes.
Trish
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Lita,
I have a friend who died from metastasized cancer two weeks ago. She was in home hospice for about three weeks but eventually got so bad they took her to a hospice associated with a local hospital. Her family sang hymns to her as she left this world peacefully for a better one, where there is no pain and suffering.
My mother died in hospice, one associated with a hospital in Seattle. The people working there were so nice that you almost felt like you were in a home. I flew in to be with her, was with her for 14 days at hospice, and was at her side when she died.
My husband was in home hospice at my daughter's house (we were visiting from another state and staying at my daughter's home when his COPD got extremely bad). The hospice worker(s) kept us informed about everything. When my husband was about to die, our small family was called to his side: my daughter, my eight year old grand daughter, my 11 year old grandson and I. We have no indication that it was traumatic for my young grandchildren, though they were both very sad too.
Lita, unless your local hospice is a dump, I don't think it makes a difference: home or institution. It's something you may want to discuss with your family. What's important, imho, is that family and/or dear friends are with you.
For about a month, I too have followed your difficult journey. I pray the God of all comfort give you true peace.
jaycee, you have to decide what is best for your family and you...but mostly you. Our family was full of sorrow but not traumatized. I live with my daughter now and sleep in the room where my husband died. To be honest, I haven't thought about the fact that he died here since I moved here five years ago...until right now. My husband and I were married for 48 years.
You and I have discussed my sister. She lived about five minutes away from hospice when I called and said our mother would die soon. She just could not bring herself to come. I respect her wishes. We do have to take into consideration the feelings of family members...and respect their decisions, as they should respect ours.
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Lita, I have been following your story since I joined the site pretty much, I always lurked in the Stage 4 forums, even when I wasn't Stage 4 myself yet...Thinking of you as you make decisions and praying relief from the pain for you soon.
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Lita, I purchased LTC (long term care) insurance many years ago. I have instructed my DH to place me into inpatient hospice when it gets too much for him (and me). It seems between your pain and lessened QOL, you are ready. Following you these two years, you wouldn't make this decision unless you were sure.
I am also a Hospice volunteer and go into homes of loved ones wishing to die in the privacy of their home; their belongings, their memories, familiarity of favorite music, and movies/shows. It requires 24 hour care from family, volunteers and for some, paid assistance. You would have to judge if your DH can pull this off. You would be surprised at the hidden strengths of our loved ones. Really surprised.
Much love to you.
S
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Lita- I am sorry that you are in such pain. My mother died at home with hospice- my sister moved in also. I was doing chemo, but, was there a lot also. My mom wanted to die at home in her beloved house and garden and it was good and peaceful and she had more control I think. she thought that the hospice nurses and social workers were "angels" - they brought whatever she needed and discussed the hard things with her.
I want to die at home also.
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Dear Lita I am always amazed by you. I have no advice. I’ve witnessed hospice at home and in a hospital setting. I can’t decide for myself, I have long term care insurance but I’m not sure I want to be home. I send you prayers and hope you find the best decision for you. Wishing you much love and peace. Maire
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Oh, my dear lita,
I have nothing for you. No words of wisdom nor practical experience. When I have tough decisions to make, my intuition guides me, but it’s not infallible. I think my decision would be different if I didn’t live alone vs having family living at home. My children and grandchildren all live close by and I would consider their feelings too. But who knows? Aim for whatever alleviates your pain best
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Lita, I am sorry you are in so much pain all the time but you are facing what most of us will at some point, making the decision to enter hospice for some comfort and pain relief.
To p ut my two cents in, when my mom got diagnosed with lung cancer in december 2018, we decided on hospice right away and it was a godsend. When she got there in January her body seemed to say OK, this place is comfortable and she passed away less than 48 hours later without any pain or discomfort with my older brother telling her it was OK to rest. She passed right after that. Hospice can be good, even if it is in a hospital settings. Usually there are no restrictions on visitors or visiting hours and families are also made comfortable.
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love to you Lita. Do what feels right to you, and it will be.
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Lita, I'm sending you hugs and praying for peace and relief from your pain.
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{{ LITA }}
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Lita I'm so sorry that you've reached this place way too soon. I think this is one of the toughest decisions many of us will have to make, and there is no right or wrong answer. You have to do what feels right to you.
The thought of waiting for death in an unfamiliar place with unfamiliar faces frightens me, but my husband is freaked out by the thought of me dying at home. It's easier to try to ignore the eventual reality, but you've made me realize that we shouldn't wait to try to come to terms with what would make us both feel okay, and that I should probably schedule a visit to the hospice facility for both of us now before we are forced into making a quick decision.
Hugs.
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Lita, I'm so very sorry that you are in pain! I will pray that the hospice people will be able to make you comfortable, whichever location you choose. Your strength and sense of humor during your difficult path with breast cancer has been so very inspiring. Your honesty and ability to handle everything thrown at you with such grace has helped me personally more than I can say. Thank you for everything that you've contributed to the boards! Wishing you peace and comfort! Theresa
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Lita, I will pray for you, so that your decision gives you peace and relief. ❤
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Jaycee49, I'm thinking of you. I pray that your EM pain is relieved. You are such an extraordinary woman! I do not forget the support you offered to me on these boards and by PM. I hope everything gets better, hugs
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Lita, I'm so sorry you are in such pain. Hospice, either type, should be able to help.
I've only observed (visited) an in=patient hospice. They weren't attached to a hospital but a free-standing facility. It was beautiful and word was that the nurses took care of everything. If you didn't want to see someone you didn't have to. His room had a bed for his wife to stay.
I would think that home vs hospice center really depends on what your family is willing to do or can cope with. If you're at home, they're going to have to provide a lot of care. For some families that's a loving time and people are happy for having done it. For other families, it doesn't work. Can your husband be honest about how he feels on this subject?
Many hugs to all of you. . .
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Oh Lita, Sunset, Jaycee,
This is tricky stuff, and it seems unfair that we must agonize over these decisions when we have already suffered so much. It must be so hard to have reached the point of intolerable pain(some of you a while ago). You are brave and strong and among the very best of women. I pray for even half of the strength and grace that you have exhibited when it's my turn. You are inspirational and deserved much better. I am so wanting pain relief and peace for each of you. All my very best, Mary Jane
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Lita, I've been in pain for a couple of months now. I don't know how people do it. I don't know how YOU do it. But I do understand the need to make that pain end. Good luck to you, my friend. I hope you find some relief.
ABeautiful Sunset
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Dear ladies, hope you will not mind me asking about pain. Is it the case that at certain point there is simply NO way to control the pain ? Or controlling it would have implications which make you chose to live with it ? Or I misunderstand something?
May we all live and die happily , hugs {}
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Anotherone, each of us is different, but here's a couple things to understand about pain and pain meds -
Different types of pain require different types of pain meds, and depending on how the cancer is affecting your body you might need more than one pain med. At one point when I was in really bad shape, I was on a combination of four different pain meds (three plus a breakthrough) to bring my pain down to a level I could manage. Sometimes it takes a lot of experimenting to find a combination that is effective. Some people never find the right combination. Not everyone's MO is willing to go through the trouble, thankfully mine was, but it can help to have a palliative care pain specialist.
Pain meds aren't without their own unpleasant side effects, especially at high doses.
Maybe it's just me, but I don't know that pain meds ever completely erase the pain (I'm talking about the kind of non-stop intense pain that can make you scream out loud), they just make it more manageable if you're lucky, or they're strong enough to knock you out and you just sleep all day . The pain still lurks under the surface, and it really wears you down.
Your body builds up tolerance, requiring a higher dosage for the same effect. You can't keep increasing the dosage indefinitely because some (most?) pain meds can kill you if you take too much. And it can often depend on how healthy you are (and what organs the cancer is affecting), and the SEs of that particular drug. When you get close to the limit they usually either try something completely different, or add another one. So instead of continuing to increase my morphine (which can slow or stop your breathing), at a certain point we added a fentanyl patch.
I got over the hump and am only on one mild pain med right now, but the thought of going back to that place (and I will because of where one of my tumors is located) is what scares me the most about dying from cancer, even though I think my doctor did an outstanding job of helping me to manage the pain.
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Jumping in with another topic--I don't mean to hijack the conversation about pain, which is very important to all of us. (Maybe we can have multiple conversations,although I can no longer multitask with any reliability.)
I decided a few months ago to make an anatomical donation--give the med scholars a bit of levity, I think. I completed the paperwork,and think that's taken care of. Decided against any service until ashes are back,and then just a small family and dear friends remembrance at ash disposition. I am relieved. It will be so much easier for people, and it won't bother me at all.I've felt a bit "rejected" that I can't donate any body parts to be used, but now I'll just donate the whole body. and hope that can be useful, and maybe amusing?
Anyone else who is doing that?
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Thanks to you all!
Now, how much of the heavy duty stuff do we have to take?
[ dear bro has COPD AND CHF ]
L
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thank you for explanation, LoriCa
Can anything be done to stop that level of pain for you again if it starts ?
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SchnauzerMom, I posted about my desire to do that on Aug. 6:
https://community.breastcancer.org/forum/8/topics/770023?page=148#post_5435733
I got lazy and did not follow through to find the right organization to accept the donation. The closest university (UNM Albuquerque) only accepts within a radius of 60 miles and I am further than that. (See posts after my first one). What organization did you use? Was it a university/medical school? There are a few, maybe seven, other organizations that handle donations. I need to research them but still feel lazy. My normal state.
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