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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.
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I think, reading your answers here, that the main point is that for TODAY, in as much shock as you are, you don't need "a plan" or "all the answers" or even a FEW of the answers. This day is enough, unto itself. You need time. Things will fall into place, be slotted into place, be re-arranged in placement. Today is to take a deep breath. I hope you will stay on the forum.
I hope the plan is learning all you can about Alzheimer’s, making sure all needed legal and medical plan documents are in place with the help of an attorney, finding a support group, researching options on things like adult day programs, memory care, and in home support help, and prioritizing keeping yourself as healthy as possible for what may be a long road. Now, that just sounded overwhelming didn’t it?! In a different set of circumstances I truly learned how you eat an elephant, it’s one bite at a time. Take things as you can handle them, always accept help, and know you’re doing your best. No one gets it perfect, don’t worry about answering to family or anyone. I wish you much peace
I am so very sorry, sir. Every situation is different, obviously, but folks have been through similar situations and may be able to offer some examples of experiences that may help you in the impending journey. When my wife was diagnosed with early onset Alzheimer’s disease, it put me into a fog for a while. My plan, as such, was to keep her as happy and joyful every single day that we had left. It took six years for that horrible disease to take her life, and that was two years ago. Enjoy her, and may she enjoy life as the disease progresses. Have no regrets and help her get through this. It will end at some point, and no matter how much you prepare, it will still hit you like a ton of bricks when she passes. Again, I am so sorry. Tell folks your plan, at this early stage, is to help your wife enjoy the life that she has remaining on this earth. The rest will come to you and your family over time.
Perhaps you could ask those family members who want to know about "the plan" if they are willing to be part of the plan. Are they willing to treat your wife as the person that they have known? Or are they going to withdraw because they don't know how to be with her any more? You need to surround yourself with family who "gets it" and let the others move on.
I have mentioned it here before, but will mention it again. There are two YouTubers that I follow who are dealing with early-onset dementia and have chosen to make their situation public.
"John and Healther's Dementia Journey" -- John has documented their last five years or so (with lookbacks to earlier times). Earlier this year, John moved Heather to a nursing home, and at this point, it seems like she may be coming to the end of her time on earth. John has been very open about his feelings over the years. You might be able to relate to him, or it might just be too much for you at this time.
"Living with Dementia" -- Leslie writes: "Join us each week, where we discuss our life with early onset dementia. Jason was diagnosed in 2018 with this horrible disease. We want to educate the world, because there is a false perception associated with this disease. As Jason's wife of 33 years, I am his caregiver. Not only do I have the role of wife and caregiver, but I am also a Registered Nurse with a Bachelor of Science in Nursing. Do I have all the answers? Definitely not, but I love to educate others, and hopefully make your journey not feel so alone."
You don't have to answer that right now. You are still figuring it out, and that is enough of an answer for others. For now, just continue living one day at a time, as you have been. Things will gradually change. Some changes will seem to appear suddenly. Just be prepared for this to happen, and navigate those changes along the way. At some point, your wife will benefit from being cared for in a care home. You simply aren't equipped to take care of 24 hour medical needs on your own. Try and make the most of your time together now; she's been given a life sentence, with a shortened window of time. And as she continues to decline, she won't be able to participate or won't remember. As your wife's condition progresses, if those same family members are still around asking what to do - give them a role in helping to care for her. Give specific tasks, otherwise they will not know what to do or how to help. Some people really don't want to help. Give them a task. They can say no. Don't expect anything from anybody! People have their own lives to manage, and most will not make themselves available to you. You will be on your own. When it becomes more than you can do, you find a suitable care home, and spend your time visiting her there.
Is she newly diagnosed? Or has she had it for a while?
You will figure out a plan as you become educated about ALZ and learn and see how things go. One thing is for sure: a person can plan all day long and then find out it may not appropriate or gets derailed by something unexpected.
For now you need to make sure all your and her legal ducks are in a row: she has a PoA besides you and younger than you (because you are probably close in age and there's always the risk of you getting sick or passing before her); help her to create a Advanced Healthcare Directive; make sure her Will is updated; meet with an estate or financial planner so that you know exactly where you stand.
Join a local support group (many can be found if you query on Nextdoor.com).
It's a little hard to answer "What's the plan?" because we don't have any idea why they're asking it: is it because your wife is progressing rapidly and they are orbiting around helping more and more (and maybe this is putting a strain on their lives); or do they see you struggling trying to handle everything yourself and maybe are burning out so they are concerned for you?
They may just be asking it out of sheer ignorance (and I don't mean that in a disrespectful way)... you are all on the same learning curve but the younger generation will certainly be totally unfamiliar with ALZ.
Maybe hearing "a plan" is a way to give themselves some comfort, or feel productive with this disease.
May you gain wisdom and peace in your heart on this journey.
Tell family members you don't know your "Plan" yourself right now, and will need more information, as well as discuss options with her Doctor.
There will eventually be a "Plan" such as her treatment options, hiring caregivers, or what to expect as the disease progresses.
It's too early to figure all these details out, you will probably feel very worried and overwhelmed at first. You can get information from the Alzheimer's Association website: https://www.alz.org/
Come back here for plenty of personal experience information. Don't panic, just stay calm as possible and take this situation one day at a time. People here will be supportive and try to help you.
I wish you strength as you start on this difficult journey.
Your response is that the plan, with Alzheimer's, as with ALL dementia, now is a matter of living day to day the best you can, with the most help and hope you can get. Let them all know that dementia is not predictable and that any person's journey is as individual as his or her own thumbprint. Tell them that the plan, with all dementia, is to consult the medical team, get all the support you can, take it day by day, and hope for the best while preparing for the worst. Assure them that the trajectory is downward with this dementia as with all. Encourage them to do their own research on Early Onset Alzheimer's. Tell them that you appreciate ANY support, help with shopping, with appointments, with watching you wife while you attend to things, with the occasional casserole. Tell them that you hope that, unless you ask for input, you will be spared the input of others as to what they may or may not feel should be done, as this is private and personal business of you and your wife now, you both being in shock, and you have a lot to work out--that you're both in the hands of the medical team you will consult. Tell them you will share things with them as you feel is fitting, and in your own timing. That you hope in future you can have some update meetings, but right now it is about moving forward a day at a time.
You will find that you need to set firm limits on hearing too many stories about their Uncle Clarence and Aunt Edna where it comes to friends and extended family. Reassure them you are attending to business within your family circle with Medical, and will be letting them know as you go along.
Heart out to you. Please join any support group you can think of, even to those online on Facebook. Stay here and read. Come to us with your specific questions; there is little we can do to help, but you may feel less alone. I am so very very sorry.
It took me 2 years to develop a “plan” after my husband’s Alzheimer’s diagnosis. (I keep wishing for a firmer timetable of the disease development from the Alzheimer’s gods to make the planning easier!) I spent the first year in panic and grief. But then, I secured access to bill paying, our finances, etc., made his and my safety a priority, and now I’m working on better socialization and activities for him and myself. I’ve made plans for leaving our home to be closer to resources, and that part of the plan is a year away.
Attend a support group and take classes on dementia. People there will help you develop a plan, or something like it.
That’s a lot to navigate, so doing things as you are able is fine. Don’t feel the need to answer to others. Processing that information is an adjustment. One thing that is so exciting right now is the new treatment for Alzheimer’s. It’s an intravenous medication that offers potential help that wasn’t previously available. Is your wife a candidate for that kind of treatment? Oh, I might see an Elder Law attorney for advice on estate planning with your situation in mind.
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.
I have mentioned it here before, but will mention it again. There are two YouTubers that I follow who are dealing with early-onset dementia and have chosen to make their situation public.
"John and Healther's Dementia Journey" -- John has documented their last five years or so (with lookbacks to earlier times). Earlier this year, John moved Heather to a nursing home, and at this point, it seems like she may be coming to the end of her time on earth. John has been very open about his feelings over the years. You might be able to relate to him, or it might just be too much for you at this time.
"Living with Dementia" -- Leslie writes: "Join us each week, where we discuss our life with early onset dementia. Jason was diagnosed in 2018 with this horrible disease. We want to educate the world, because there is a false perception associated with this disease. As Jason's wife of 33 years, I am his caregiver. Not only do I have the role of wife and caregiver, but I am also a Registered Nurse with a Bachelor of Science in Nursing. Do I have all the answers? Definitely not, but I love to educate others, and hopefully make your journey not feel so alone."
For now, just continue living one day at a time, as you have been. Things will gradually change. Some changes will seem to appear suddenly. Just be prepared for this to happen, and navigate those changes along the way.
At some point, your wife will benefit from being cared for in a care home. You simply aren't equipped to take care of 24 hour medical needs on your own.
Try and make the most of your time together now; she's been given a life sentence, with a shortened window of time. And as she continues to decline, she won't be able to participate or won't remember.
As your wife's condition progresses, if those same family members are still around asking what to do - give them a role in helping to care for her. Give specific tasks, otherwise they will not know what to do or how to help. Some people really don't want to help. Give them a task. They can say no. Don't expect anything from anybody! People have their own lives to manage, and most will not make themselves available to you. You will be on your own.
When it becomes more than you can do, you find a suitable care home, and spend your time visiting her there.
You will figure out a plan as you become educated about ALZ and learn and see how things go. One thing is for sure: a person can plan all day long and then find out it may not appropriate or gets derailed by something unexpected.
For now you need to make sure all your and her legal ducks are in a row: she has a PoA besides you and younger than you (because you are probably close in age and there's always the risk of you getting sick or passing before her); help her to create a Advanced Healthcare Directive; make sure her Will is updated; meet with an estate or financial planner so that you know exactly where you stand.
Join a local support group (many can be found if you query on Nextdoor.com).
It's a little hard to answer "What's the plan?" because we don't have any idea why they're asking it: is it because your wife is progressing rapidly and they are orbiting around helping more and more (and maybe this is putting a strain on their lives); or do they see you struggling trying to handle everything yourself and maybe are burning out so they are concerned for you?
They may just be asking it out of sheer ignorance (and I don't mean that in a disrespectful way)... you are all on the same learning curve but the younger generation will certainly be totally unfamiliar with ALZ.
Maybe hearing "a plan" is a way to give themselves some comfort, or feel productive with this disease.
May you gain wisdom and peace in your heart on this journey.
There will eventually be a "Plan" such as her treatment options, hiring caregivers, or what to expect as the disease progresses.
It's too early to figure all these details out, you will probably feel very worried and overwhelmed at first.
You can get information from the Alzheimer's Association website:
https://www.alz.org/
Come back here for plenty of personal experience information.
Don't panic, just stay calm as possible and take this situation one day at a time.
People here will be supportive and try to help you.
I wish you strength as you start on this difficult journey.
You will find that you need to set firm limits on hearing too many stories about their Uncle Clarence and Aunt Edna where it comes to friends and extended family. Reassure them you are attending to business within your family circle with Medical, and will be letting them know as you go along.
Heart out to you. Please join any support group you can think of, even to those online on Facebook. Stay here and read. Come to us with your specific questions; there is little we can do to help, but you may feel less alone. I am so very very sorry.
Attend a support group and take classes on dementia. People there will help you develop a plan, or something like it.
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