You think your doctor will tell you when your loved one needs hospice?
They should know, right?
Not always the case.
Three signs That Indicate Your Loved One is Ready for Hospice:
1. The disease has progressed to the point that there’s no cure, and you’ve (and your loved one) has decided to manage the pain and be comfortable and not actively seek to treat the disease.
2. You and your loved one chooses to forego any further testing of hospitalizations–by this choice, you allow the dying process to happen naturally. Body functions/organs may begin to diminish.
3. You’re ready to begin to let go, say good-bye and follow the oath of hospice, which is to “neither hinder, not hasten death.”
Visit www.nhpco.org, website for National Hospice and Palliative Care Organization for more information.
I knew my mother was ready for hospice before any of her medical team suggested it.
I had asked my mother’s doctor about hospice (Alzheimer’s and Parkinson’s) months beforehand and was “poo-pooed” away. Mother had a great way of rallying herself together for doctor visits, but I lived with her, cared for her 24/7, and I was beginning to see a shift.
I knew my mother had taken a turn. I knew that both of us were over the tests, treatments, and hospital rigmarole. I knew, in essence, that she had given up the will to live.
Whether your loved one has cancer, Parkinson’s, heart disease or dementia, whether they’re young–or old–it’s hard to let go. Even when you know they’re suffering and you want them at peace, it’s hard to let go.
What’s the difference in hospice and palliative care?
First, the working definition of hospice or palliative care is: your loved one has a “life limiting condition.” Their words, not mine. While it’s technically correct, and I can’t think of a better way to say it, it still sounds odd.
In layman’s terms, most people think it means your loved one has a diagnosis of less than six months to live, and with some hospice situations, a year. While that’s technically true, some people receive hospice or palliative services for much longer.
The difference in hospice and palliative care is that palliative care specializes in the relief of the pain, symptoms and stress of serious illness.
Hospice care can provide palliative care if your loved one needs it.
Hospice focuses on terminally ill people who no longer seek treatments to cure them and who are expected to live for a year or less.
The hospice staff will then contact the person referred to set up an initial meeting to review the services the hospice will offer and sign the necessary consent forms for care to begin. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner.
When is the right time to ask about hospice?
When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent.
Even the medical community denies and avoids death. Accepting that the end is near, that you will begin to have to let go, to sit quietly by a loved one’s bedside, to not go into “heroics” and throw on the paddles or rush to the ER is very, very difficult.
The last month of my own mother’s life was in many ways one of the most peaceful times of my life. It was also excruciating. As a society, we’re no longer taught to sit with death.
We’re no longer taught to let nature take its course, to relinquish our control. Learning to do this, to hear the clock tick, to let my family come and go as I sat by my mother’s bed and wiped her brow–
It was a finishing of something I had begun.
It was bone deep and cathartic, and gave me time to think and process.
I began to see the whole of my mother’s life. I understood that both of us need to let go.
Hospice isn’t about giving up. It’s about giving in.
Author of Mothering Mother, available in hardback or on Kindle
Carol, another wonderful post. My husband was in tremendous pain, 24/7 with esophagus cancer. He had two doctors giving him pain medication, and none of it seemed to touch the pain. Although he didn’t say much, I know it was living hell for him with the pain. I was trying to manage it for him (heavy narcotic pain patches, high-end narcotic drugs, etc.), and I had never had any training and didn’t know which way to turn. Neither doctor suggested hospice to us. Many times I would call the doctor’s after-hour on call services, and receive nothing in return. It was incredibly frustrating and ineffective.
I was under incredible stress because I was afraid of giving him too much, and also trying to keep our three boys (11, 17, 18) on an even keel. When my husband was 3 months into his cancer diagnosis, my sister in law, who is a nurse and lives away, came to see us. She immediately told me I should contact hospice for pain control. She assured me it was their forte. I knew something had to be done.
Once I contacted hospice they acted immediately. It was still a roller coaster with the pain, (many days of extreme ups and extreme downs) but there were also many days it was adequately managed and his pain seemed bearable. Hospice worked continually on his pain management, and my husband was on hospice 7 months before he passed away. They did everything possible to make this situation less stressful for not only my husband and myself, but my children also.
Thanks for your informative posts. You are really doing a wonderful service by giving people information in your writings. elaine
Hello -
I am a documentary maker and hospice volunteer in Atlanta, Georgia.
I’ve produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.
It’s called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.
http://fitsweb.uchc.edu/Days/days.html
It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.
203 Days recently won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).
If you’d like more information please go to my website
http://bbarash.com/bb_203days.htm
I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.
Sincerely,
Bailey Barash
Please check out my blog at http://www.hospicephysician.wordpress.com, thanks.
I have been a hospice nurse for many years, only recently stopped as I am back in school working on my master’s in nursing to become a nurse practitioner. For an Alzheimer’s patient, the day they are diagnosed, there is no cure, only palliation (symptom control). There are some new meds that might slow the progression for a little while, but that is it.
Hospice can come in for an Alzheimer’s patient when they are no longer able to walk independently. The key concept here is that hospice can help the caregiver as well as the patient. They can provide respite care to give the caregiver a chance to go out and relax a little, for example, as well as providing services to the patient. All meds that pertain to the diagnosis are covered under hospice, another saving grace.
Many people wait too long to call hospice. It can reallymake a huge difference in the journey if you have help and support.
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My husband’s aunt was not able to attend Thanksgiving today and they are calling on hospice tomorrow. Your post has been really helpful during a hurting, uncertain time. Thank you.