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Who are you caring for?
Which best describes their mobility?
How well are they maintaining their hygiene?
How are they managing their medications?
Does their living environment pose any safety concerns?
Fall risks, spoiled food, or other threats to wellbeing
Are they experiencing any memory loss?
Which best describes your loved one's social life?
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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.
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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.
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Mostly Independent
Your loved one may not require home care or assisted living services at this time. However, continue to monitor their condition for changes and consider occasional in-home care services for help as needed.
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I agree that you need more information about what it means to receive hospice services, but you always have the legal right to discontinue their services. One of the things that might help is a 2 page form your state may have (in my state it's a legally enforceable document) which is like a DNR only it's very specific, and asks you to decided what kinds of measures you want taken at this time. Some of the questions can be confusing, but someone should help answer them. Thing is, when hospice is involved, and your loved one is at home, they are responsible for medical care. They are not there to deny care to your mother, but the goal is not to make her better, the goal is to keep her comfortable as her life nears the end. It's very difficult to get used to the idea that there may not be anymore trips to the hospital, but they may not be needed anymore.
You should also have a conversation with them about what you should do in various situations, like what to do if you think your mom is having a heart attack or a stroke. Our gut reactions are to call 911, but the paramedics are are required to attempt to resuscitate, and maybe your mom (and you, as her proxy) have made the DNR decision. So then, who do you call, what do you do???
These are very important questions you need answers to. It may be that the person or people you have dealt with so far haven't done all that they're supposed to do, or aren't the best match for you. I fired the first hospice service; we never did meet their social worker, and the nurse could not have been more disrespectful, unresponsive and unavailable. The next agency has been mostly great. When I requested a new social worker they were great, said no problem, and our new one is completely different.
It’s normal to second guess yourself after having made the decision to bring in hospice care for your loved one.
Why? Because this is it - it’s life and death.
Think about what brought you to this decision. Were their several trips via 911 to the hospital with your mother often suffering more because of them? Has your mother just said “enough is enough”? Mother having many “bad” days vs good?
Hospice won’t let your loved one suffer when dying. They are experienced in providing the correct level of care to someone with a terminal condition.
Talk with them about your concerns.
And if you feel the decision to plave your mother on hospice is not the right one for her, then speak to your mother if she gave input and take her off hospice. Realize when this happens the patient will be the one suffering the poking and prodding not anyone else.
Speak with your hospice providers and let them know how you feel.
Is she in a facility in Hospice or at home? In any case, if you feel she needs medical care or needs to go to the hospital or needs to see the doctor, you need to contact your Hospice Nurse and tell them what you need—what’s going on. They handle all this now, not you. If you are confused over what Hospice is or provides, ask the nurse to explain it to you or read over the materials you were given when she was put on Hospice.
The main point of Hospice is no extreme measures. That the person passing is to be kept comfortable and allowed to pass. There is a doctoer associated with Hospice, there has to be. He is the one who writes up the orders the nurses need to perform their duties and give meds. By the time Hospice is called in, everything possible is has been done. A Hospital visit will not change the outcome. If you choose to take Mom to a doctor or the hospital the contract with Hospice is null and void.
I'd suggest reaching out to someone at the hospice to discuss these concerns, maybe the social worker or a volunteer. It's a really tough decision to make and not unusual to have doubts.
There's a great doctor who's written a book to help us decide on what end of life measures are helpful and which do more harm called "Being Mortal" by Atul Gawande. Frontline did an interview with him in 2015 so if you search the title and PBS Frontline you should be able to watch a short introduction. It's very hard to watch someone slip away in peace, but it's harder to watch them fight against it and drown/strangle/etc. Hospice allows them to pass peacefully if the medicines are given to reduce the anxiety and feelings of drowning or strangling. It's hard not to "do something" but comfort measures are often the most merciful we can give when it's time. Bless you.
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.
Thing is, when hospice is involved, and your loved one is at home, they are responsible for medical care. They are not there to deny care to your mother, but the goal is not to make her better, the goal is to keep her comfortable as her life nears the end. It's very difficult to get used to the idea that there may not be anymore trips to the hospital, but they may not be needed anymore.
You should also have a conversation with them about what you should do in various situations, like what to do if you think your mom is having a heart attack or a stroke. Our gut reactions are to call 911, but the paramedics are are required to attempt to resuscitate, and maybe your mom (and you, as her proxy) have made the DNR decision. So then, who do you call, what do you do???
These are very important questions you need answers to. It may be that the person or people you have dealt with so far haven't done all that they're supposed to do, or aren't the best match for you. I fired the first hospice service; we never did meet their social worker, and the nurse could not have been more disrespectful, unresponsive and unavailable. The next agency has been mostly great. When I requested a new social worker they were great, said no problem, and our new one is completely different.
I hope you get the answers you need soon.
Why? Because this is it - it’s life and death.
Think about what brought you to this decision. Were their several trips via 911 to the hospital with your mother often suffering more because of them? Has your mother just said “enough is enough”?
Mother having many “bad” days vs good?
Hospice won’t let your loved one suffer when dying. They are experienced in providing the correct level of care to someone with a terminal condition.
Talk with them about your concerns.
And if you feel the decision to plave your mother on hospice is not the right one for her, then speak to your mother if she gave input and take her off hospice. Realize when this happens the patient will be the one suffering the poking and prodding not anyone else.
Speak with your hospice providers and let them know how you feel.
How old is Mom and what is her health problem?
So went googling. There are a number of talks by Gwande about his book on YouTube.
https://m.youtube.com/watch?v=mviU9OeufA0
And a TED talk.
https://m.youtube.com/watch?v=L3QkaS249Bc