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I know the posts are crap, but as I am letting go of my husband and awaiting a hospice evaluation, just reading it gives me more anxiety. it is cruel.i can alleviate my pet’s end of life pain but not a human being?
Hospice is needed and it can be very helpful. You just have to know what the whole purpose of them is.
I am truly sorry you are losing your husband, it is a difficult time for both of you, may The Lord give you strength, guidance, courage and comfort during this difficult time.
You will get your true answers from the professional rather than anecdotal garbage from individual opinion. I hope your husband experiences comfort instead of pain
@janice1234 I can tell you that my experience with Hospice- three times now for different family members - has always been incredibly helpful - not only to keep the loved one comfortable and provide for their needs, but also to provide comfort for the family.
In particular when my dad was passing - they were a huge support for my mom and the rest of the family. And they were a great deal of help for my dad to assuage his pain and give him comfort and support.
I'm so sorry you are going through this - please don't let the naysayers scare you.
Hospice was a marvelous thing for my mother in her last year. It was hospice based on dementia, which got her soothing drugs to keep some of the hallucinations (which were terrifying her) at bay.
The hospice people visited her, talked with her, provided music and a visiting minister if she wanted them. They were all enormously kind and caring. When she moved into memory care, they immediately provided a comfortable hospital bed without me having to struggle to figure out how to find one and get it in the room.
They called me regularly with medical updates and asked if I wanted to add treatments for increasing health problems unrelated to the dementia diagnosis. She was 92 and had wanted to go ‘home’ with Jesus for many years. Only at the very end, the last few days, did they increase medications to those which would make her passing less painful.
They did nothing harmful, everything helpful, and stayed with her to the end. When they called me to say she had passed away, I could hear the genuine grief and compassion in the voices. They kindly and respectfully took care of her remains until the undertaker could arrive.
They then stayed in contact for a year to offer grief support to any of the family if we wished it.
100% paid by Medicare, never saw a bill. Sure, they have to make a profit and pay their employees, but I am glad of it, and thank them all for they do for whatever compensation they receive. I could not have handled it all alone.
To my mind, yes, it is cruel, that. I am so sorry you are in this place. I am thankful you will face this ending with help for suffering. As I have said on the posts (and yes, their repetitive nature has to be hurting some), I, as an RN, was already in hospitals (though as an LVN) in the early 70s when there was no relief for my patients. Doctors were afraid to give pain meds in adequate amounts. Many begged me to "kill" them. There was screaming and shrieking and agony and attempts by staff to somehow muffle this from other patients. And as I posted already we nurses were told the most outLANDISH things about this suffering. That it was "God's will", that they "weren't in all that much pain" but that rather they were doing some cultural screeching in that they were Greek or Italian or whatEVER and therefore they were "emoting". Times have changed. Thank goodness. When we got Hospice it was such a godsend through my entire career.
I have friends who are still nursing and unfortunately am privy to the way corporate entities have cashed in on Medicare's coverage and these entities are now the honeys of the hedgefunds. They are getting more and are doing less. Hospice used to have dedicated teams available to you any time on any day for whatever you needed, even if just counseling. Now it is down to two bedbaths, good equipment, an RN once a week, a call from clergy and a call from a social worker who sometimes doesn't know too much. That's MY bash on Hospice. Though much as I wish it was still what once it was, it is the best way for us to get medications that can ease the passing of those we love and are losing. And it is a choice, not a mandate.
My heart goes out to you. Demand answers to ANY questions you have at any time. Know that they are getting very well paid for the care they are giving you. I am so sorry that it has come now to this loss.
I wish you the very best. Remember, you have a say in how much medication is given, and a right to know that it may hasten your loved one's deliverance by some moments, hours, days, even weeks if given in sufficient amounts to prevent agitation and confusion as the organs begin to shut down. TALK to the RN. Make her stay and answer all your questions. Make her/him find someone who DOES have the answers if he/she doesn't have them.
AlvaDeer, please don’t stop repeating these things. Being new to this life stage and also being a person who learns best from the sincere recounting of other’s experiences, you and many others on this forum are teaching me discernment. Now I can easily filter out the bull-oney that poster was shoveling.
If it makes you feel any relief, the cruelty of that poster is the point of their posts.
I have experienced hospice with family members, and the people who work with hospice are angels on earth— from massage therapists to chaplains to social workers to the doctors and nurses. They are amazing people who have felt called to this vocation.
Death is a natural part of life: we are all born to die. No one can escape death.
Hospice is so supportive of the family also— it’s an amazing service to the dying.
Avoid those hospice bashing posts, just as you'd avoid the news channels that dwell on topics about fear mongering that keep you up all night. You have to focus on things you know to be true and good and uplifting, that reinforce your own beliefs. Not trolls or newspapers who use the motto "if it bleeds it leads". The internet is rife with nonsense and idiocy. I used hospice twice for both of my parents whose DISEASES were killing them. Hospice prevented them from suffering in pain to their end, that's all. Morphine and Ativan didn't kill them, trust me on that. I MYSELF have used morphine and Xanax for stage 4 cancer pain, in larger doses than hospice prescribes, and I'm still here, typing to you on my tablet, in remission.
Take what you like and what's helpful to you from A.C., and ditch the rest. Fear mongering posts that mention not giving morphine and Ativan to BABIES say it all, don't you think? What do babies have to do with diseased elders at end of life?
I'm sorry for your situation, and wish you good luck and Godspeed with your dear husband.
I had a terrible experience with hospice 25 years ago when my father was dying. Phone calls were not answered, nurses not available, etc. I told my children to NEVER put me in hospice.
However, when my husband was dying in the hospital, the palliative care physician suggested that he be transferred to an inpatient hospice facility. My sons and I finally agreed. The hospice facility was beautiful, more like a high-end hotel. I was able to just be his wife and not his caregiver. They took outstanding care of my husband and he died peacefully in this beautiful facility. I have changed my mind about hospice. Not all hospice situations are created equally.
I can honestly say that I was able to take better care of my Husband because of Hospice. I got an awesome Nurse that came each week. She would check on him and order any medical supplies, medications, equipment that we needed. I got a CNA that came 2 times a week, as he declined there were 2 CNA's. they would give him a shower and the CNA would order any personal items that were needed. (Briefs, absorbent pads, creams, ointments, gloves, wipes and these were delivered to our door just like the items the nurse ordered.) A Social Worker was assigned, a Chaplain as well. I asked on a few occasions for a Volunteer to come sit with him while I had to go out and the regular caregiver was not available. I got encouragement, education and emotional support. I am going to also add that my Husband was on Hospice for almost 3 years. So Hospice did not "kill" him. As I have said to others that have posted about this, if killing were the goal of Hospice they did a pretty poor job of it in our case.
Not everyone has the same experience, I know that. I feel sad for those that did not have a good experience. But their loved one was going to die or else they would not have been eligible for Hospice to begin with. There is a level of acceptance that comes with facing the death of a loved one. There may be more anger and denial in the "Hospice bashing" than anything.
I have said to those that have not had good experiences they can elect to go off Hospice, they can call and talk to a Team Manager, they can change Hospice companies. It is like any other medical service you would not stay with a Doctor if you were not being treated properly would you?
I agree with you about ending our pets life but we can not do the same for our family. In some places that can be done but the restrictions are such that it can make it almost impossible. In some cases if a person is unable to take the medication themselves a loved one can not give it to them to take. This leaves anyone with physical limitations like ALS unable to end their life when they want. If a person is not cognizant they can not be given the medication. This leaves out anyone with dementia even if they have previously indicated that they would want to end their life. Kinda of a catch 22 in many respects. We need better laws that allow assisted suicide or what might be better called a compassionate death assistance
Hospice was the reason my dad was able to die in his home without pain or suffering. They provided all needed supplies and guidance, including the meds that ensured his comfort. Nothing cruel happened other than the ravages of congestive heart failure and its inevitable march to the end. I remain grateful for the help of hospice
Here is the problem with Dignitas and Pegasos. One can say about 10,000 but it comes down to more like 30,000. There is a brief residency; it requires hotel accomodations. There is the cost of returning the body home if wished. And most people who go with their loved one wish to have someone to accompany THEM when it is over, and to help them home. I recommend highly Amy Bloom's memoir, In Love. Her husband, who was diagnosed with Alzheimer's, used Dignitas. The other thing you need to know is that the paperwork alone is horrible, onerous, with them wanting copies even of old divorces and so on. Will keep one so busy they might as well LIVE. I highly recommend people interest in this subject join FEN, Final Exit Network. 866 654 9156 or www.finalexitnetwork.org. I can recommend a good book on VSED (voluntary stop eating and drinking) if anyone interested in that subject. That's The VSED Handbook by Kate Christie, who with her Dad helped her mom, his wife, with this method of exiting. There is a good bibliography and appendix at the end of it.
My experience of hospice for my dad was very positive. We signed up in early January 2024 and he passed peacefully in May 2024. My experience was much what like Grandma1954 describes (except only 4 months in my dad’s case).
Medical Aid in Dying (MAID) is legal in 10 US states plus Washington DC. The requirements are stringent and I understand and support that. My dad asked many times during his last few months to be euthanized but he did not qualify because he had dementia and was therefore not considered of sound mind to understand what he was agreeing to.
I wish you well. I wish you and your husband peace.
My hospice experience with my mom was a good experience. It also included grief counseling with a volunteer for twelve months. It was very good support even when certain family members started taking out their frustrations on me. The nurse came twice in one night. Once she came and told us how to comfort mom. She added extra chucks and repositioned her in bed. After mom died that morning, I called the nurse and she came back. She followed proper protocol disposing all medications such as the opioid morphine and other things I can't remember. It was so long ago. She visited often like once or twice a week. There was also a social worker involved. We had a visiting nurse from an agency who also helped with the insulin and we had aides to come out and assist with meals. There was also a Chaplain involved.
I had a situationship end and it was all too much to process. The volunteer counselor was very understanding and helped me with my feelings. I don't know what I would have done without all of their support.
Janice, if you have a good Hospice you should have jo problems. They must go by Medicare guidelines since Medicare pays the bills. You can go on the Medicare website and look up Hospice.
When Hospice comes to evaluate and maybe admit, you need someone there with you who is impartial. This person may hear things you don't. If this is home hospice, family will be doing much of the work. A Nurse should come knce a week, an aide 2 or 3x for bathing. Thats usually an hour but ask if you can have more time. A member here was able to get, I think, 4 hrs a day 5 days a week. It will dependcon how many aides the Hospice is able to hire. You should be able to ask the Nurse any questions you have. She should be available, by phone, 24/7. The Nurse should be able to tell when a client is transitioning. The first sign the body is shutting down client no longer can swallow. This means no more food or watering, the body can no longer digest. It will do more harm than good. Remember, this Nurse and aide have a boss. You have problems with them u call them. If your not satisfied with the care, you can change Hopices. The Nurse is responsible for ordering durable equipment needed, like the hospital bed, medications, Depends, Chuxs, etc.
Not that you can't ask questions here, but the Nurse should be your go to person. There are services for family members too.
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:
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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").
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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.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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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.
Ignore those idiotic posts; you can alleviate your husband's pain and anxiety with the meds Hospice prescribed.
If they don't seem to be working as needed, call the hospice nurse. And if your hospice isn't responding, fire them and get a different one.
Hospice is needed and it can be very helpful. You just have to know what the whole purpose of them is.
I am truly sorry you are losing your husband, it is a difficult time for both of you, may The Lord give you strength, guidance, courage and comfort during this difficult time.
You certainly did not need to read any of that.
My deepest condolences on what you are going through.
And just a warning to anyone, if anyone post anything bad about hospice on Janice thread. It will not go over well , with us or administration!!
Janice please ignore anything that you don't like from others.
We are here for you, to support you.🙏😥
In particular when my dad was passing - they were a huge support for my mom and the rest of the family. And they were a great deal of help for my dad to assuage his pain and give him comfort and support.
I'm so sorry you are going through this - please don't let the naysayers scare you.
The hospice people visited her, talked with her, provided music and a visiting minister if she wanted them. They were all enormously kind and caring. When she moved into memory care, they immediately provided a comfortable hospital bed without me having to struggle to figure out how to find one and get it in the room.
They called me regularly with medical updates and asked if I wanted to add treatments for increasing health problems unrelated to the dementia diagnosis. She was 92 and had wanted to go ‘home’ with Jesus for many years. Only at the very end, the last few days, did they increase medications to those which would make her passing less painful.
They did nothing harmful, everything helpful, and stayed with her to the end. When they called me to say she had passed away, I could hear the genuine grief and compassion in the voices. They kindly and respectfully took care of her remains until the undertaker could arrive.
They then stayed in contact for a year to offer grief support to any of the family if we wished it.
100% paid by Medicare, never saw a bill. Sure, they have to make a profit and pay their employees, but I am glad of it, and thank them all for they do for whatever compensation they receive. I could not have handled it all alone.
I am so sorry you are in this place. I am thankful you will face this ending with help for suffering.
As I have said on the posts (and yes, their repetitive nature has to be hurting some), I, as an RN, was already in hospitals (though as an LVN) in the early 70s when there was no relief for my patients. Doctors were afraid to give pain meds in adequate amounts. Many begged me to "kill" them. There was screaming and shrieking and agony and attempts by staff to somehow muffle this from other patients. And as I posted already we nurses were told the most outLANDISH things about this suffering. That it was "God's will", that they "weren't in all that much pain" but that rather they were doing some cultural screeching in that they were Greek or Italian or whatEVER and therefore they were "emoting".
Times have changed. Thank goodness. When we got Hospice it was such a godsend through my entire career.
I have friends who are still nursing and unfortunately am privy to the way corporate entities have cashed in on Medicare's coverage and these entities are now the honeys of the hedgefunds. They are getting more and are doing less. Hospice used to have dedicated teams available to you any time on any day for whatever you needed, even if just counseling. Now it is down to two bedbaths, good equipment, an RN once a week, a call from clergy and a call from a social worker who sometimes doesn't know too much. That's MY bash on Hospice. Though much as I wish it was still what once it was, it is the best way for us to get medications that can ease the passing of those we love and are losing. And it is a choice, not a mandate.
My heart goes out to you. Demand answers to ANY questions you have at any time. Know that they are getting very well paid for the care they are giving you. I am so sorry that it has come now to this loss.
I wish you the very best. Remember, you have a say in how much medication is given, and a right to know that it may hasten your loved one's deliverance by some moments, hours, days, even weeks if given in sufficient amounts to prevent agitation and confusion as the organs begin to shut down. TALK to the RN. Make her stay and answer all your questions. Make her/him find someone who DOES have the answers if he/she doesn't have them.
Now I can easily filter out the bull-oney that poster was shoveling.
I have experienced hospice with family members, and the people who work with hospice are angels on earth— from massage therapists to chaplains to social workers to the doctors and nurses. They are amazing people who have felt called to this vocation.
Death is a natural part of life: we are all born to die. No one can escape death.
Hospice is so supportive of the family also— it’s an amazing service to the dying.
Take what you like and what's helpful to you from A.C., and ditch the rest. Fear mongering posts that mention not giving morphine and Ativan to BABIES say it all, don't you think? What do babies have to do with diseased elders at end of life?
I'm sorry for your situation, and wish you good luck and Godspeed with your dear husband.
However, when my husband was dying in the hospital, the palliative care physician suggested that he be transferred to an inpatient hospice facility. My sons and I finally agreed. The hospice facility was beautiful, more like a high-end hotel. I was able to just be his wife and not his caregiver. They took outstanding care of my husband and he died peacefully in this beautiful facility. I have changed my mind about hospice. Not all hospice situations are created equally.
I got an awesome Nurse that came each week. She would check on him and order any medical supplies, medications, equipment that we needed.
I got a CNA that came 2 times a week, as he declined there were 2 CNA's. they would give him a shower and the CNA would order any personal items that were needed. (Briefs, absorbent pads, creams, ointments, gloves, wipes and these were delivered to our door just like the items the nurse ordered.)
A Social Worker was assigned, a Chaplain as well.
I asked on a few occasions for a Volunteer to come sit with him while I had to go out and the regular caregiver was not available.
I got encouragement, education and emotional support.
I am going to also add that my Husband was on Hospice for almost 3 years. So Hospice did not "kill" him. As I have said to others that have posted about this, if killing were the goal of Hospice they did a pretty poor job of it in our case.
Not everyone has the same experience, I know that. I feel sad for those that did not have a good experience. But their loved one was going to die or else they would not have been eligible for Hospice to begin with. There is a level of acceptance that comes with facing the death of a loved one. There may be more anger and denial in the "Hospice bashing" than anything.
I have said to those that have not had good experiences they can elect to go off Hospice, they can call and talk to a Team Manager, they can change Hospice companies. It is like any other medical service you would not stay with a Doctor if you were not being treated properly would you?
I agree with you about ending our pets life but we can not do the same for our family. In some places that can be done but the restrictions are such that it can make it almost impossible.
In some cases if a person is unable to take the medication themselves a loved one can not give it to them to take. This leaves anyone with physical limitations like ALS unable to end their life when they want. If a person is not cognizant they can not be given the medication. This leaves out anyone with dementia even if they have previously indicated that they would want to end their life.
Kinda of a catch 22 in many respects. We need better laws that allow assisted suicide or what might be better called a compassionate death assistance
I highly recommend people interest in this subject join FEN, Final Exit Network. 866 654 9156 or www.finalexitnetwork.org.
I can recommend a good book on VSED (voluntary stop eating and drinking) if anyone interested in that subject. That's The VSED Handbook by Kate Christie, who with her Dad helped her mom, his wife, with this method of exiting. There is a good bibliography and appendix at the end of it.
Medical Aid in Dying (MAID) is legal in 10 US states plus Washington DC. The requirements are stringent and I understand and support that. My dad asked many times during his last few months to be euthanized but he did not qualify because he had dementia and was therefore not considered of sound mind to understand what he was agreeing to.
I wish you well. I wish you and your husband peace.
Don't forget to take care of you too!
I had a situationship end and it was all too much to process. The volunteer counselor was very understanding and helped me with my feelings. I don't know what I would have done without all of their support.
When Hospice comes to evaluate and maybe admit, you need someone there with you who is impartial. This person may hear things you don't. If this is home hospice, family will be doing much of the work. A Nurse should come knce a week, an aide 2 or 3x for bathing. Thats usually an hour but ask if you can have more time. A member here was able to get, I think, 4 hrs a day 5 days a week. It will dependcon how many aides the Hospice is able to hire. You should be able to ask the Nurse any questions you have. She should be available, by phone, 24/7. The Nurse should be able to tell when a client is transitioning. The first sign the body is shutting down client no longer can swallow. This means no more food or watering, the body can no longer digest. It will do more harm than good. Remember, this Nurse and aide have a boss. You have problems with them u call them. If your not satisfied with the care, you can change Hopices. The Nurse is responsible for ordering durable equipment needed, like the hospital bed, medications, Depends, Chuxs, etc.
Not that you can't ask questions here, but the Nurse should be your go to person. There are services for family members too.