Are you sure you want to exit? Your progress will be lost.
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?
Acknowledgment of Disclosures and Authorization
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 acknowledge and authorize
✔
I consent to the collection of my consumer health data.*
✔
I consent to the sharing of my consumer health data with qualified home care agencies.*
*If I am consenting on behalf of someone else, I have the proper authorization to do so. By clicking Get My Results, you agree to our Privacy Policy. You also consent to receive calls and texts, which may be autodialed, from us and our customer communities. Your consent is not a condition to using our service. Please visit our Terms of Use. for information about our privacy practices.
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.
Remember, this assessment is not a substitute for professional advice.
Share a few details and we will match you to trusted home care in your area:
Taking care of family for 8 years? Sadly, this was a choice. And you made the choice TO do it and to CONTINUE to do it.
Now your husband has ALS, and I cannot even begin to imagine the horror, the terror, the dread, the needs. Can't even imagine such a thing. Of course you are terrified and overwhelmed.
I have a lot of questions before answering this. What was your marriage like before this happened? How close and loving and bonded were you to this person who is your partner through all of life and I assume even during the time you cared for your parents together? IS THERE LOVE here, or were you already broken when ALS entered the picture with its inevitable devastating implications?
If you have not loved your partner for a long long time, that is one thing for your family to face. If you do love your partner, but cannot face being caregiver at this point in your life, that is another. But essentially what you HAVE told us here is that you cannot do it. And that is not something to tell US, unfortunately--it is something to tell your partner.
Whether there is a whole lot of love here or not, this is the time to sit down and say honestly that you cannot do hands on care. That you simply are not capable of it. That means either divorce or division of assets and care placement. How you handle this end of life care, which is what you are looking at now, and this may be a very slow burning funeral pyre, in terms of visitation and support will/may depend upon how much love there is in this relationship.
It's very difficult to answer a question in which we are given no information. Your very brief note to us says basically that you cannot go on being a caregiver. And honestly, that says it all. If you cannot, then choice isn't involved. It is a matter of saying you cannot do it. No matter how much that hurts all involved, there is simply no way.
I am so sorry. This is a devastating diagnosis, one that would have me running (whilst I could) to Dignitas, or Pegasos, or FEN here in the USA. But that's a personal decision for the one struck by this disease. I am TRULY so very sorry for all involved, and can just feel the truckload of woes you feel crashing down upon you.
People often find themselves roped into becoming involuntary caregivers. They don't choose it. They don't want it. They don't what to do though. On the one hand the family member (usually parents) need care and cannot function independently and no one else is stepping up to help. So it starts out by basically functioning day-to-day and just trying to keep your own head above water while the recipients of your care try to pull you down. People have a heart and even if they had a bad relationship with the parents they still try.
You were a career RN, so you know what the OP's husband is in for with ALS. It's terrible. This person has some hard decisions to make. There is a person on this forum who gave the best and most truthful advice I've ever heard about caregiving.
At some point it's them or you. This is true. I hope the OP chooses herself and walks away from being the parents' care slave.
While I appreciate your sentiment about God providing, how far are you willing to take that belief? And I ask this as a lifelong, active Christian - how far do we go?
God will provide; therefore, I don't have to work to earn money to feed my family.
God will provide; therefore, I don't have to worry about going to the doctor when I'm sick, or even for routine checkups. I don't need to be take care of my physical, mental or emotional well-being. I don't need to keep on top of my children's regular pediatric care.
God will provide; therefore, I don't have to worry about my children getting an education.
God will provide; therefore, I don't have to worry about finding a place to live, or about heating it in the dead of winter.
We can go on and on.
God is omnipotent; but God also gave us brains to think with, and a community to help us. God gives us the tools and the talents we need to live, but if we choose to NOT take advantage of those tools, then that, in and of itself, is an insult to God.
You have the first difficult part out of the way... Admitting you are done and need help. Next it is figuring out what you can delegate to others that are able to manage care. That could be telling parents that you can no longer help as much. or at all for a while. If they are cognizant I am sure that they would understand, they may not like it. But your priority is your husband. This leads to either they hire help, find an AL facility or MC if they are not cognizant. Now to him... Can you safely manage his care at home? If you need help you get help in to assist you. If you can no longer manage him safely at home then you have the difficult discussion with him that he will have to enter into care. OR you can adapt the house so that it fits his needs. (May help you later so you can age better in the home.) As to getting help. Is he a Veteran? If so the VA has different programs that may help. Caregivers, they in some cases will adapt a home so the Veteran can remain at home. There are Veteran Foster Homes. Private homes/people/families take Veterans and care for them in their home. These are trained, Vetted people that the VA works with. The Veteran does pay to reside in the VA foster Home. It is less than what facility would cost.
but you have done part of "freeing" yourself mentality. Admitting that you can't do it all. many people do not get to this part.
"It is another day of depression & a night of insomnia. I am really not even alive anymore. As the sole caregiver for my elderly parents, both with different forms of dementia, for 8 years, I guiltily almost rejoiced when my job ended and they went in peace. Freedom for me and my life at last! Then, I was shot by a bullet right in between my eyes. Immediately following, my husband was diagnosed with ALS. Needless to say, having already experienced severe caretaking burnout, I know that I cannot do this. I’m done."
The Parents are deceased.
OP, I have a friend who's husband passed from ALS in 2011. She wasn't able to eat in front of him, bc he couldn't eat and was very upset to see HER eat. She watched him die for 2 years, literally, withering away. To this day, she has still not gotten past the experience. She posts about it continuously on FB. She hasnt had a date since he died. She is alone and likely will be until she herself dies. ALS is not something you should tackle, imo, its too much. Why not place DH in a Skilled Nursing facility and go visit him daily, as his wife instead of his burned out caregiver? Then you won't further harm yourself with this exhausting and excruciating journey, nor will you witness the parts you choose not to witness.
I'm very sorry for you and for your DH that this cruel diagnosis was handed down to both of you. May God bless you and give you strength and peace in your heart to make decisions that take both of your best interests to heart.
For starters, no more caregiving to your elderly parents. They're done receiving your blood, sweat, and tears. You put in eight years and that's enough. Depending on what condition they're in, here are the choices YOU offer them now. Homecare (that they pay for) or a residental care facility. If they choose to be stubborn and refuse either (this happens very often with seniors) leave them to it. Let them fail until a crisis happens then they get no choice because the state puts them into a facility. Your husband is the situation now. If he needs to go into residential care because you can't be the caregiver, then that has to happen. There are some places that are apartment-style living where there's some care staff and you'd be able to live there.
There are care choices out there that don't include you being driven to your grave by caregiving. That's such a loaded word 'caregiving'. Giving to me seems like a gift. I call it what it usually is: care slavery. You are not the only option for your parents or your husband. You matter too and so does your life.
I thought the parents had passed. Wow. This adds another layer if they are still living. I would definitely drop their care and focus on my spouse. ALS is all-encompassing.
Well I have bad news. You will never be totally free. Even if all your loved ones were to pass away you will always be haunted by what a sacrifice you made to care for them. Your life will never be the same. Two years later I am selling my house because if all the memories it holds. I need a new start.
OP, if you're still reading I like the idea someone mentioned down thread about moving together to a place that offers a continuum of care; that way it's not a choice between martyrdom and abandonment, he can be looked after and you can still live a somewhat normal life. I know that ALS can progress slowly so you may not need that yet, but having a plan in place now may take some of the pressure off.
My situation is the reverse. My young husband had brain cancer and now my parents need help. Dad has dementia. I am so sorry. I am already burnt out. I do not know how old you are. Do you have: A disability policy from the workplace, social security disability, any VA benefits such as Aid & Attendant if he served, Medicare if he is over 65. If your husband ever served, get him rated at your local VA. This could help tremendously! If approved he would get around $4000/month and later tax free widow benefits for you. Since you have already endured so much, hire help early. Do not fear eventually placing your husband in a nearby facility either. They are not all terrible! You know what's ahead. My only regret with my late husband, was I waited too long to seek outside help. I am so sorry. This isn't right nor fair.
I just read the posts that were sent to you and am truly in shock at most of them. First, I want to congratulate you on caring for your parents for eight years. Your statement that they went in peace is a true credit to you and your love for them. That you could do it shows amazing strength and fortitude. My family is working through that process and it is draining and painful. My sister says "people will do for love what they will not do for money." Sit down and take credit for what you did instead of worrying about your relief when the burden was finished. You did it. You cared!
I am so sad to hear about the blow that has come to you and your husband now. I can hear that you have nothing left to give - on top of the grief of this diagnosis. I don't know what you will be able to do or what you won't be able to do, but you will certainly need resources outside of yourself, so get them, find them and use them. I went through cancer the last few years and my husband and I took all the help that was offered us. I will tell you that I discovered that there was a big, huge God in the Bible that really loved me and that had the power to carry me when I had nothing at all left in me. He also sent me loving people to help. I spent a lot of time praying and will do the same for you.
What exactly is so "shocking" about caregivers telling other caregivers to also take care of THEMSELVES, MaryPrince? God cannot care for this man when his wife is at the end of her rope with hands on caregiving, sorry. I think she needs some realistic and practical advice now, before she winds up dying before her husband.
If I get a disease like ALS, I intend to go with Medical Aid in Dying in a state that does not require residency. I will make the plans well in advance, so there is no question that I was not of sound mind. I won't put myself or my family through a long agonizing death. Just my plan, no one else has to agree.
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.
Sadly, this was a choice. And you made the choice TO do it and to CONTINUE to do it.
Now your husband has ALS, and I cannot even begin to imagine the horror, the terror, the dread, the needs. Can't even imagine such a thing. Of course you are terrified and overwhelmed.
I have a lot of questions before answering this.
What was your marriage like before this happened?
How close and loving and bonded were you to this person who is your partner through all of life and I assume even during the time you cared for your parents together?
IS THERE LOVE here, or were you already broken when ALS entered the picture with its inevitable devastating implications?
If you have not loved your partner for a long long time, that is one thing for your family to face.
If you do love your partner, but cannot face being caregiver at this point in your life, that is another.
But essentially what you HAVE told us here is that you cannot do it. And that is not something to tell US, unfortunately--it is something to tell your partner.
Whether there is a whole lot of love here or not, this is the time to sit down and say honestly that you cannot do hands on care. That you simply are not capable of it.
That means either divorce or division of assets and care placement.
How you handle this end of life care, which is what you are looking at now, and this may be a very slow burning funeral pyre, in terms of visitation and support will/may depend upon how much love there is in this relationship.
It's very difficult to answer a question in which we are given no information. Your very brief note to us says basically that you cannot go on being a caregiver. And honestly, that says it all. If you cannot, then choice isn't involved. It is a matter of saying you cannot do it. No matter how much that hurts all involved, there is simply no way.
I am so sorry. This is a devastating diagnosis, one that would have me running (whilst I could) to Dignitas, or Pegasos, or FEN here in the USA. But that's a personal decision for the one struck by this disease. I am TRULY so very sorry for all involved, and can just feel the truckload of woes you feel crashing down upon you.
People often find themselves roped into becoming involuntary caregivers. They don't choose it. They don't want it. They don't what to do though. On the one hand the family member (usually parents) need care and cannot function independently and no one else is stepping up to help. So it starts out by basically functioning day-to-day and just trying to keep your own head above water while the recipients of your care try to pull you down. People have a heart and even if they had a bad relationship with the parents they still try.
You were a career RN, so you know what the OP's husband is in for with ALS. It's terrible. This person has some hard decisions to make. There is a person on this forum who gave the best and most truthful advice I've ever heard about caregiving.
At some point it's them or you. This is true. I hope the OP chooses herself and walks away from being the parents' care slave.
While I appreciate your sentiment about God providing, how far are you willing to take that belief? And I ask this as a lifelong, active Christian - how far do we go?
God will provide; therefore, I don't have to work to earn money to feed my family.
God will provide; therefore, I don't have to worry about going to the doctor when I'm sick, or even for routine checkups. I don't need to be take care of my physical, mental or emotional well-being. I don't need to keep on top of my children's regular pediatric care.
God will provide; therefore, I don't have to worry about my children getting an education.
God will provide; therefore, I don't have to worry about finding a place to live, or about heating it in the dead of winter.
We can go on and on.
God is omnipotent; but God also gave us brains to think with, and a community to help us. God gives us the tools and the talents we need to live, but if we choose to NOT take advantage of those tools, then that, in and of itself, is an insult to God.
Why not use the resources available to lessen the load on a caregiver ?
Wouldn't God have provided these things to mitigate suffering ?
Admitting you are done and need help.
Next it is figuring out what you can delegate to others that are able to manage care.
That could be telling parents that you can no longer help as much. or at all for a while. If they are cognizant I am sure that they would understand, they may not like it. But your priority is your husband.
This leads to either they hire help, find an AL facility or MC if they are not cognizant.
Now to him...
Can you safely manage his care at home?
If you need help you get help in to assist you.
If you can no longer manage him safely at home then you have the difficult discussion with him that he will have to enter into care. OR you can adapt the house so that it fits his needs. (May help you later so you can age better in the home.)
As to getting help.
Is he a Veteran? If so the VA has different programs that may help. Caregivers, they in some cases will adapt a home so the Veteran can remain at home.
There are Veteran Foster Homes. Private homes/people/families take Veterans and care for them in their home. These are trained, Vetted people that the VA works with. The Veteran does pay to reside in the VA foster Home. It is less than what facility would cost.
but you have done part of "freeing" yourself mentality. Admitting that you can't do it all. many people do not get to this part.
"It is another day of depression & a night of insomnia. I am really not even alive anymore. As the sole caregiver for my elderly parents, both with different forms of dementia, for 8 years, I guiltily almost rejoiced when my job ended and they went in peace. Freedom for me and my life at last! Then, I was shot by a bullet right in between my eyes. Immediately following, my husband was diagnosed with ALS. Needless to say, having already experienced severe caretaking burnout, I know that I cannot do this. I’m done."
The Parents are deceased.
OP, I have a friend who's husband passed from ALS in 2011. She wasn't able to eat in front of him, bc he couldn't eat and was very upset to see HER eat. She watched him die for 2 years, literally, withering away. To this day, she has still not gotten past the experience. She posts about it continuously on FB. She hasnt had a date since he died. She is alone and likely will be until she herself dies. ALS is not something you should tackle, imo, its too much. Why not place DH in a Skilled Nursing facility and go visit him daily, as his wife instead of his burned out caregiver? Then you won't further harm yourself with this exhausting and excruciating journey, nor will you witness the parts you choose not to witness.
I'm very sorry for you and for your DH that this cruel diagnosis was handed down to both of you. May God bless you and give you strength and peace in your heart to make decisions that take both of your best interests to heart.
There are care choices out there that don't include you being driven to your grave by caregiving. That's such a loaded word 'caregiving'. Giving to me seems like a gift. I call it what it usually is: care slavery. You are not the only option for your parents or your husband. You matter too and so does your life.
I like the idea someone mentioned down thread about moving together to a place that offers a continuum of care; that way it's not a choice between martyrdom and abandonment, he can be looked after and you can still live a somewhat normal life. I know that ALS can progress slowly so you may not need that yet, but having a plan in place now may take some of the pressure off.
A disability policy from the workplace, social security disability, any VA benefits such as Aid & Attendant if he served, Medicare if he is over 65. If your husband ever served, get him rated at your local VA. This could help tremendously! If approved he would get around $4000/month and later tax free widow benefits for you. Since you have already endured so much, hire help early. Do not fear eventually placing your husband in a nearby facility either. They are not all terrible! You know what's ahead. My only regret with my late husband, was I waited too long to seek outside help. I am so sorry. This isn't right nor fair.
I just read the posts that were sent to you and am truly in shock at most of them. First, I want to congratulate you on caring for your parents for eight years. Your statement that they went in peace is a true credit to you and your love for them. That you could do it shows amazing strength and fortitude. My family is working through that process and it is draining and painful. My sister says "people will do for love what they will not do for money." Sit down and take credit for what you did instead of worrying about your relief when the burden was finished. You did it. You cared!
I am so sad to hear about the blow that has come to you and your husband now. I can hear that you have nothing left to give - on top of the grief of this diagnosis. I don't know what you will be able to do or what you won't be able to do, but you will certainly need resources outside of yourself, so get them, find them and use them. I went through cancer the last few years and my husband and I took all the help that was offered us. I will tell you that I discovered that there was a big, huge God in the Bible that really loved me and that had the power to carry me when I had nothing at all left in me. He also sent me loving people to help. I spent a lot of time praying and will do the same for you.
See All Answers