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It's been my experience when hospice says someone is actively dying that they are showing the signs of the body and organs shutting down. It could be not eating or drinking, skin mottling, pee turning very dark, becoming unconscious and more. Hospice should have given you a booklet explaining what to expect at end of life and if they haven't please ask them for it. Also please ask your hospice nurse any questions you may have as that is what they are there for.
For both parents, they were actively dying when their breathing changed to the gurgled Cheyenne-stokes sounds. That's when death is immininent. Both of them took to their beds quite a while before they were actively dying. Mom was semi conscious for a week beforehand, no eating/drinking/dark urine, etc. She started the labored breathing about 30 hours before she passed.
Dad was in bed for about 2 weeks, same as mom. He began the labored breathing about 8 hrs before he passed. His hands, lips and feet were particularly blue so we knew he was actively dying.
When my dad was in hospice care (16 months), he didn't enter the actively dying stage until his last 48 hours. He had been mostly awake but unresponsive for a couple of days, but on the third day, one of his nurses told us that he was actively dying and that he was at an irreversible point. The next day, another of his nurses pulled me aside and showed me the signs that they can see, like fixed pupils, shallow, uneven breathing, graying skin, folding earlobes (this one shocked me) and rattling in his chest. It was unnerving. He died the next day.
A shout out to any hospice workers here - y'all are a blessing. Dad's hospice nurses were such a comfort to all of us, but most of all to Dad. Thank you for what you do.
Thanks krista413. I am getting this info second hand from my sister who is there. Hospice is communicating with her on-site,and not directly to me. This information helps.
Hi George. As you will know, people enter hospice when their doctors decide that there is likely to be fewer than six months to live, and when the family and the patient wish to decline further treatment and to accept that death is coming, to opt for comfort rather than attempting life saving treatments that will have no good result, and may indeed cause more pain. When most people enter hospice they are perhaps diagnosed with fewer than six months to live, but are not actively dying. But as the disease process continues their organs begin to fail and to slowly or more rapidly shut down. There are then signs that death is dear. More shallow breathing, more congestions in airways, slower or more rapid heartbeats, failure of the kidneys with concentrated urine, cooling of the extremities, a total loss of appetite or the inability to swallow and process food. This indicates that death is near. Hospice patients often don't die in the 6 month time frame. A fellow member has had a parent on hospice for 1 and 1/2 years and has been removed because it seems any assessment in 6 months is not happening. So they are hospice patients, but not actively dying. Someone in the final passage, usually less than two weeks in duration, can be considered to be actively dying. Some Hospice personnel use the newer term "transitioning" , but because this term in dictionary definition means changing sex, some dislike the term. Basically we are talking semantics here, so if hospice tells you something, and it's a term you don't understand just ask them what they mean by that term. They will explain.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/what-is-active-dying/
Also, call Hospice and ask them. There is no shame in not knowing their lingo. They should have explained what they meant.
Hospice should have given you a booklet explaining what to expect at end of life and if they haven't please ask them for it.
Also please ask your hospice nurse any questions you may have as that is what they are there for.
Dad was in bed for about 2 weeks, same as mom. He began the labored breathing about 8 hrs before he passed. His hands, lips and feet were particularly blue so we knew he was actively dying.
Best of luck with a difficult situation.
A shout out to any hospice workers here - y'all are a blessing. Dad's hospice nurses were such a comfort to all of us, but most of all to Dad. Thank you for what you do.
When most people enter hospice they are perhaps diagnosed with fewer than six months to live, but are not actively dying. But as the disease process continues their organs begin to fail and to slowly or more rapidly shut down. There are then signs that death is dear. More shallow breathing, more congestions in airways, slower or more rapid heartbeats, failure of the kidneys with concentrated urine, cooling of the extremities, a total loss of appetite or the inability to swallow and process food. This indicates that death is near.
Hospice patients often don't die in the 6 month time frame. A fellow member has had a parent on hospice for 1 and 1/2 years and has been removed because it seems any assessment in 6 months is not happening. So they are hospice patients, but not actively dying. Someone in the final passage, usually less than two weeks in duration, can be considered to be actively dying. Some Hospice personnel use the newer term "transitioning" , but because this term in dictionary definition means changing sex, some dislike the term.
Basically we are talking semantics here, so if hospice tells you something, and it's a term you don't understand just ask them what they mean by that term. They will explain.