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My Sister Is Palliative


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My sister is 47 and was diagnosed with metastic spinal cord compression two months ago. She is my best friend and I feel I am sinking into grief or depression. Don't know which. She hasn't been out of bed and is increasing her orpine rapidly. I can't get my head around it. Any comments will be read. Thank you for reading

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Dear One,

I'm so sorry to learn of your sister's serious illness, and I can only imagine how painful this must be ~ for both of you. Obviously the two of you are very close, which makes this even more difficult and challenging.

The following is taken from my article, Anticipatory Grief and Mourning ~ and I encourage you to read the entire article:

In some ways, anticipatory mourning can be harder than the grief we experience after the death, because when we are waiting for the death to happen, we are on constant alert, living in a state of emergency over an extended period of time.

On the other hand, this period offers the benefit of preparation time, as we and those close to us begin to think about our life without the one who is dying, and how we and our loved one can use the time remaining to reflect, to prepare for the future, and to finish unfinished business.
Read on here >>>

See also Anticipatory Grief and Mourning: Suggested Resources

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I am so sorry to hear this news about your sister, Gail. I think an important thing to consider is to have you and the other family members discussed what you as a family can do to help in her care. Does your sister know what is happening and is her pain being managed? You mentioned palliative ~ do you mean that she is in palliative care now. If so, that is a very good thing for the team can help your sister and the family understand what is going on.

Spinal cord compression is a very serious condition and metastatic means that it is spreading throughout the spinal column. Is this the primary source of her cancer or did it start elsewhere? Being flat in bed is one way to help with the pain as well as medications. There are other options that need to be considered so that the best palliative care is being given.

Educating yourself on what this disease is will help you understand what your sister is going through.

Has your sister discussed with the family what her wishes are ~ it is very important that whatever is done is what she wants; it is her body and if she understands what is going on it is her choices.

You can help by giving her all the support you are able to give. Show her your love. Be present to her. Words are not always necessary. A quiet presence is very comforting. Spend time sharing memories and laughing with her.

Of course, you cannot “get your head around” this news. It has to be a very scary thing. You might be frightened at the fact of losing her. This is not depression, it is grief ~ what many of us have learned to be called anticipatory grief.

Our moderator, Marty, has a good explanation of the term anticipatory grief on the main page of this forum under Anticipatory Grief and Mourning. She says this:

Extended illness, disability, severe accidental injury, a terminal diagnosis, or the aging and decline of an elderly family member can produce anticipatory grief. We are reacting and continually adapting not only to an expected loss, but to all the losses -- past, present, and future -- we encounter in that experience. These cumulative losses can shatter our assumptive world, cause us great confusion and challenge our most basic spiritual and philosophical beliefs. The resulting grief can affect us physically, emotionally, cognitively, socially and spiritually. Here we will comfort and support one another as we identify, confront and mourn these many losses.

You have posted under this thread and if you have time it might help to read some of the posts from others who have expressed their own thoughts. We are here and are good listeners. You are not alone for many of us have been where you are right now.

It helps to “talk” about your concerns.

I see that our moderator has already posted to you and has given you good advice, but I still want to let you know that we are here for you.

Anne

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Thank you so much for that Anne!

My sister knows that her condition won't get better but I think she thinks it won't get worse. We feel if we tell her she will give up. She went blind age 9 and has an auto immune disease. She has been bad on her legs for years but never been paralysed. She has lost all feelings. She is cared for 24 hours a day. Her pain is under control. My mam thinks she will go on for years. You sound like you are experienced in mscc No one has given us a time. I know by the internet is has a short life expectancy. I feel cheated, empty and useless. Also guilty for moving her the day she fell as I feel if I hadn't she would have more feeling. We thought it was a relapse of her auto immune disease. We had no idea it was this. It is secondary to breast cancer 8 years ago. It's on t5 and t6. Does it usually spead fast? It isn't on organs. I have two children and started a new Jon a month before this happened. Work helps but the fast few days even that it hard to go there and act normal.

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I understand about sibling illness and loss, Gail. I had a brother who died of brain trauma after an injury while serving in Vietnam and two sisters who died of different forms of cancer way before they should have.

When my older sister died of small cell carcinoma in the lungs after being diagnosed only a few weeks earlier it sent me into a state of numbness. We were very close. I loved her dearly. I felt cheated because it all happened so quickly. We were in different states and it was the dead of winter ~ she living in the Dakotas with the worst ice and snow storm on record and I was caring for my husband who could not be left at the time due to his advanced illness. Our good-byes had to take place over the phone. Those last visits are so precious to me now. We laughed and shared silly memories of our younger years. We cried and talked about how very much we’d miss each other.

My point in telling you this is that you have time to build a few more memories with your sister. What is her name? It is understandable that she would be on your mind. That is one of the things we mean by anticipatory grief. I am sorry that you have all those negative feelings of “cheated, empty and useless” but remember, they are only feelings and you have control of them. You have a very important role in your sister’s journey right now and that is to be there for her as well as for you.

I do know a little about spinal conditions. I have had spinal stenosis for years. The degenerative spinal disease I have now is in all areas of my spine. The worse is in my cervical and lumbar regions. When the discs bulge to the painful point I go to Physical Therapy. That usually helps for a while. I have flare-ups and am not a candidate for surgeries even if I would agree to any due to other health issues. I do not have any cancer. My condition is manageable to a degree and I’m always trying to keep updated with what is going on in my body.

We both know that there is no answer to “how long” we have on this earth. Be there for your sister as you can and come here to share your story if you wish to. I so hope you have a good palliative care team available for everyone. They can help you with what you are going through. They can answer your questions.

Anne

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Gail,

My sister has spinal cancer, so I understand your feelings somewhat. My heart goes out to you. It hurts. I'm so sorry. We pray for a miracle throughout each day. My sister had a long medical career (surgical RN, Director of Nurses, Hospital Administrator), so is well aware of all that is happening to her. She doesn't want to die and leave her husband and other daughter, yet is comforted that she will soon be with her daughter who died a couple of years ago. She chose quality of life over quantity. She chose to be kept out of pain (bone pain is intense), and no other treatment. She is being cared for at home by her younger daughter. Both daughters were/are RNs.

I was contacted night before last at 11:30 p.m. to be informed that my brother-in-law, whom I've known and loved like my brother since I was 8 years old, has SEPSIS, which is threatening his life right now. He, too, served in Vietnam Nam (Bien Hoa Air Base).

You are being given the best of advice by others here. I just wanted to tell you that I understand, and I care that you are hurting.

May God hold you all tenderly, and meet all your needs.

Blessings,

Carrie

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Gail,

I am so sorry about your sister's condition. I am very very close to my sisters and talk to the one that lives in my town nearly every day so I understand how your sister can be your best friend. We have always been there for each other and I can't imagine it any other way...as we age, however, I know this is a dreaded day that is coming.

I do hope you'll check out the anticipatory grief section. It's where I posted over my journey with my mom's dementia until her death. It's very helpful to know there are others reading that understand and care and walk this journey with you.

We will be here for you if you want us to, we have all suffered loss, many of us in many ways.

You and your sister will be in my thoughts and prayers, even as Carrie is already.

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Aw what a lovely bunch of people you all are. I hurt when I read your messages and you all have gone through so so much. My thoughts are also with you all. I have read the article and has valid points so thank you for that. My sister has increased pain relief today and now waiting for nurse to arrive as still in pain. I cry every single day. And my mind is on her constantly especially when my visits have been painful to watch her. Hopefully they will soon sort her out. There is no mention of hospice at moment as sis hasn't come to terms how ill she is. So you think would be a better idea than home nurse for the pain side of things?

Thank you so so much. If I can help any of you please don't hesitate. You have given me strength.

Gail x

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Hospice is wonderful and very helpful. Lots of times a doctor can explain it to them in a sensitive way that doesn't imply they're giving up but rather that they're getting much needed help.

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You may find this article helpful and informative, Gail:

MOMENTS OF LIFE-MADE POSSIBLE BY HOSPICE

by Maggie Vescovich, MS-CCC/SLP

Studies show that the vast majority of people who’ve had a personal experience with hospice through a family member or friend are left with a positive impression of what hospice can do. However, most Americans don’t have this personal, intimate experience and many don’t really understand how hospice works; who pays for it, the scope of services offered, and the level of expertise of the hospice team. These aspects remain a mystery most of us.

In 2014, The National Hospice and Palliative Care Organization (NHPCO) set out to educate the public about hospice care. NHPCO launched a first of its kind, national public awareness campaign called “Moments of Life: Made Possible by Hospice.” Their website, MomentsofLife.org, highlights real patients and caregivers who portray their own personal stories. These are people who have not “given up” by choosing hospice. Instead, what you’ll see in these stories are patients and caregivers working together to glean more ‘living’ and quality of life through the support of hospice at a critical time.

Take a moment and visit this site. In the short vignettes and personal testimonies you will learn about special moments of love and life that occur even when facing terminal illness. Holy Redeemer Hospice was honored to be included in one of these stories. We helped Pam and Steve when Steve became seriously ill from ALS. One important service highlighted in this story was that we were able to support Pam, not just care for Steve. Hospice is a holistic approach to care, not only for the patient but also for their loved ones.

Moments of Life: Made Possible by Hospice is showing the world that hospice is about more than care for the dying. Hospice and palliative care can make more meaningful moments possible, even when a person is facing a serious or even terminal illness. Watch these families' stories to see the difference this person-centered care can make.

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It's like you really can't compare sudden loss and lingering loss...having been through both, they are very very hard, but different. I'd have thought losing my husband suddenly with the great shock it was would be the hardest thing in the world to go through, and it was as losing HIM any way is the worst loss I could suffer. But losing my MIL, who was my best friend back then, was one of the harder experiences I've ever had...they'd told us three weeks, she lasted almost three years after that, suffering to death, bedridden with cancer. Watching her suffer and losing her bit by bit was tortuous! So with one it's like a torment that goes on and on, and with the other it's like you're reeling with shock and unable to process it all. Very different, but losses all the same.

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