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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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I'm sorry you are dealing with this but it sounds as though you have made a wonderful and strong adaptation to your circumstances.
Please ask your physicians for a referral to palliative care which is specifically designed for patients like you and your family. You will get access to a team of doctors, nurses and social workers with experience dealing with families with a serious illness. I'm not sure why more doctors don't make these referrals and why folks generally assume one must go straight to hospice
https://getpalliativecare.org/whatis/
"Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family"
I was diagnosed with stage 4 metastatic melanoma in Jan of 2023 and given 2 months to live. The cancer was in my bones and spine as well, so the pain was excruciating. I had one chance for remission with a double dose of immunotherapy in 4 treatments that would either work or it wouldn't.
I am a realist by nature so I was planning to die. My husband would not even allow me to talk about it, my daughter was basically the same and she's an RN! So I joined a private Facebook group for stage 4 melanoma patients and that was a good thing. While my husband took excellent care of me, he just could not bear the thought of losing me so the whole subject was not discussed. I made my own cremation arrangements, and cashed out an annuity in my name and set up the funds in a joint CD, etc.
The immunotherapy worked after 2 doses and I'm showing no signs of cancer for the last 16 months, so DH talks to me NOW about how he felt THEN, while I was in bed dealing with pain and side effects of treatment. Loved ones just don't realize how WE need help and to talk about preparing to die! While it's not easy for THEM, they're leaving us ALONE with an enormous amount of decisions to make and emotion to get off our chests.
Sending you a hug and your husband a prayer for empathy on your behalf.
If you have stopped treatment have you contacted Hospice to help support you? I think having Hospice in will make this more "real" for him. You keep talking about what you want. Take him to an Attorney when you do the paperwork that need to do to make your wishes known. Make sure that he is well aware of what your wishes are.
I understand his not wanting to talk about this. It makes the situation more "real" and he does not want to face the fact that you are dying. Hard discussion to have. Have him watch some of the "Hospice Nurse Julie" You Tube videos or her Face Book. She has great info. ((hugs)) to you
But it is reminiscent of when I was dxed with NHL. My DH just never did 'accept' it and never talked about it with me. I felt very alone in that regard.
Any cancer patient has to face the 'what if' thoughts that come. And most of us want to have our LO's on board with our care wishes. I found that MANY women I met in treatment had DH's that simply could not, or would not, accept the diagnosis.
At first, I thought it was because he didn't care--later I found out that he was beyond devastated that I might die before he did. His way of handling this 'pre-grief' was to shut me out and shut down his own emotions. It wasn't personal (although, I have to say, it felt personal to the nth degree!)
My bald head made him uncomfortable. My nausea and all the side effects of the chemo seemed to make him angry, which he took out on me.
I did a long stretch of chemo and then a long stretch of 'FU chemo' and finally just said 'enough is enough'.
As far as end of life plans. I made them, put them in the portfolio where we have all our will & trust information and told my OD where things were and what I wanted. She was able to be my support system during this time.
While the person I WANTED to be 'there' for me was not able to be so, I found a small network of people who loved and cared about me and they were the ones I turned to.
It wasn't ideal, but it was what it was. Your DH is probably shutting down and not allowing himself to 'feel.' My heart goes out to you. This is a very common dynamic.
Please take care of yourself. Hopefully, your DH will come around and be able to be a support to you in this journey.
I worked as a Liaison for Hospice. There are resources online to assist. You can contact a local Hospice Agency in your area. Ask for the Social Worker. They refer to these materials as "Having the Difficult Conversation". They can provide info/workbooks for you to share with your spouse.
I am so very sorry. For your illness. For the fact your Husband is not able at this time to discuss it.
Do you have other family members that you feel safe to discuss your plans & wishes with?
Or maybe have access to a councelling service for support? Could your Husband attend a coucellor with you?
Not everyone is natuarally able to discuss this cofronting topic - maybe he needs support to do so? Whether he can or not.. you have every right to have this need met & find someone else to discuss what you need to.
I am so very sorry. If attempts to get through to your husband continue to fail, I hope you can put together a support group to rally around you. It would be good to start on that right away. There are people who will care if they know you need help. I wish you the best of luck in finding them.
I am terribly sorry to hear that. This is not uncommon for men.
Mare, are you on Hospice, or not yet? I have my second bout now of breast cancer. Had a lumpectomy. Refused removal of nodes for staging as I don't give a hang. If it has spread I will know that soon enough. I had my first bout at age 47. I am now 81. I am ready to go. Have been for some time, and in all truth I have little stomach for all the losses of aging; I am a consummate coward after witnessing as a nurse what some people go through in order to watch another season of Survivor.
So I would sit him down. I would tell him your plans. My own have been discussed with ALL MDs, written up and scanned into my chart. I will, when necessary make use of the good drugs. I will get Palliative care. I will skip Hospice in all likelihood and go directly to MAiD (Medical Aid in Dying). All is in readiness for that. Whatever your OWN plans are, do not discuss with hubby until they are discussed with your MD, perhaps a good psychologist. Then sit with hubby and tell him that you have made your plans. That you understand that it is disturbing to him to speak about it and that saddens you as it would be a great gift, a great relief to you if he could do so. But if he is unable you must accept that. But he does need to know the facts.
You should have your POLST done with your MD. It should be hanging in your house. You need to make it clear you do not wish to have ventilator or resuscitation if that is the case, no matter WHAT hubby wants and if he cannot speak of it then time to change your POA to someone who can (child, sibling, friend).
You should seek the support of support groups if you wish it. I have wonderful support from online Facebook group. Can talk with anything there including the hubby's response to anything.
I am lucky in having a very supportive partner of 36 years, and daughter. All is discussed with them and I do, as I said, feel lucky in that.
No one can force your husband to speak about this. It is very sad, as he is missing the single best thing he can now do for you. But no one can force him. I hope he will change his mind.
Ask your doctor for a good case manager for you, social worker, or whatever your "plan" of insurance can provide you. Kaiser has been MARVELOUS in my own case after one small misunderstanding at the beginning when I had to stand up for myself as to what and how I wanted something done.
It is your body to make decisions. Have you talked to your doctor about hospice? My FIL had cancer that migrated to his spine and he got fractures. He had the type of hospice care that included a spinal IV of morphine. If you choose hospice, the councelors will talk to him. You do not need his permission to do this. If he still will not cooperate, then maybe you can enter a hospice facility.
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.
Please ask your physicians for a referral to palliative care which is specifically designed for patients like you and your family. You will get access to a team of doctors, nurses and social workers with experience dealing with families with a serious illness. I'm not sure why more doctors don't make these referrals and why folks generally assume one must go straight to hospice
https://getpalliativecare.org/whatis/
"Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family"
I am a realist by nature so I was planning to die. My husband would not even allow me to talk about it, my daughter was basically the same and she's an RN! So I joined a private Facebook group for stage 4 melanoma patients and that was a good thing. While my husband took excellent care of me, he just could not bear the thought of losing me so the whole subject was not discussed. I made my own cremation arrangements, and cashed out an annuity in my name and set up the funds in a joint CD, etc.
The immunotherapy worked after 2 doses and I'm showing no signs of cancer for the last 16 months, so DH talks to me NOW about how he felt THEN, while I was in bed dealing with pain and side effects of treatment. Loved ones just don't realize how WE need help and to talk about preparing to die! While it's not easy for THEM, they're leaving us ALONE with an enormous amount of decisions to make and emotion to get off our chests.
Sending you a hug and your husband a prayer for empathy on your behalf.
I think having Hospice in will make this more "real" for him.
You keep talking about what you want.
Take him to an Attorney when you do the paperwork that need to do to make your wishes known. Make sure that he is well aware of what your wishes are.
I understand his not wanting to talk about this. It makes the situation more "real" and he does not want to face the fact that you are dying. Hard discussion to have.
Have him watch some of the "Hospice Nurse Julie" You Tube videos or her Face Book. She has great info.
((hugs)) to you
But it is reminiscent of when I was dxed with NHL. My DH just never did 'accept' it and never talked about it with me. I felt very alone in that regard.
Any cancer patient has to face the 'what if' thoughts that come. And most of us want to have our LO's on board with our care wishes. I found that MANY women I met in treatment had DH's that simply could not, or would not, accept the diagnosis.
At first, I thought it was because he didn't care--later I found out that he was beyond devastated that I might die before he did. His way of handling this 'pre-grief' was to shut me out and shut down his own emotions. It wasn't personal (although, I have to say, it felt personal to the nth degree!)
My bald head made him uncomfortable. My nausea and all the side effects of the chemo seemed to make him angry, which he took out on me.
I did a long stretch of chemo and then a long stretch of 'FU chemo' and finally just said 'enough is enough'.
As far as end of life plans. I made them, put them in the portfolio where we have all our will & trust information and told my OD where things were and what I wanted. She was able to be my support system during this time.
While the person I WANTED to be 'there' for me was not able to be so, I found a small network of people who loved and cared about me and they were the ones I turned to.
It wasn't ideal, but it was what it was. Your DH is probably shutting down and not allowing himself to 'feel.' My heart goes out to you. This is a very common dynamic.
Please take care of yourself. Hopefully, your DH will come around and be able to be a support to you in this journey.
((Hugs))
Do you have other family members that you feel safe to discuss your plans & wishes with?
Or maybe have access to a councelling service for support? Could your Husband attend a coucellor with you?
Not everyone is natuarally able to discuss this cofronting topic - maybe he needs support to do so? Whether he can or not.. you have every right to have this need met & find someone else to discuss what you need to.
This is not uncommon for men.
Mare, are you on Hospice, or not yet?
I have my second bout now of breast cancer. Had a lumpectomy. Refused removal of nodes for staging as I don't give a hang. If it has spread I will know that soon enough. I had my first bout at age 47. I am now 81. I am ready to go. Have been for some time, and in all truth I have little stomach for all the losses of aging; I am a consummate coward after witnessing as a nurse what some people go through in order to watch another season of Survivor.
So I would sit him down. I would tell him your plans. My own have been discussed with ALL MDs, written up and scanned into my chart. I will, when necessary make use of the good drugs. I will get Palliative care. I will skip Hospice in all likelihood and go directly to MAiD (Medical Aid in Dying). All is in readiness for that. Whatever your OWN plans are, do not discuss with hubby until they are discussed with your MD, perhaps a good psychologist.
Then sit with hubby and tell him that you have made your plans. That you understand that it is disturbing to him to speak about it and that saddens you as it would be a great gift, a great relief to you if he could do so. But if he is unable you must accept that. But he does need to know the facts.
You should have your POLST done with your MD. It should be hanging in your house. You need to make it clear you do not wish to have ventilator or resuscitation if that is the case, no matter WHAT hubby wants and if he cannot speak of it then time to change your POA to someone who can (child, sibling, friend).
You should seek the support of support groups if you wish it. I have wonderful support from online Facebook group. Can talk with anything there including the hubby's response to anything.
I am lucky in having a very supportive partner of 36 years, and daughter. All is discussed with them and I do, as I said, feel lucky in that.
No one can force your husband to speak about this.
It is very sad, as he is missing the single best thing he can now do for you. But no one can force him. I hope he will change his mind.
Ask your doctor for a good case manager for you, social worker, or whatever your "plan" of insurance can provide you. Kaiser has been MARVELOUS in my own case after one small misunderstanding at the beginning when I had to stand up for myself as to what and how I wanted something done.
I don't think this is unusual at all
I think if I where you I would write all my wishes down on paper. Maybe even tape them to the fridge
🙏🙂↕️