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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.
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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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Mom has white matter dementia with Capgras (imposter syndrome-not recognizing her spouse, no recognizing she is her own home,thinking there are people there) that comes and goes. She get extremely anxious at the thought of anyone other than her husband caring for her even her own daughters. Her physical decline is to the point where daughters do not feel safe caring for her alone (she falls easily and need assistance with all ADLs). We tried to have a paid caregiver along with one of her daughters this weekend and while they were there it was fine but she was in a very anxious state the entire week before, not sleeping , crying and expressing suicidal ideation. The day after the caregiver was there -now the Capgras is back after almost a year of no symptoms. If we don’t tell her things ahead of time she gets paranoid that things are being done behind her back. If we do tell her, the anxiety takes over and now seems to have triggered a return to Capgras after months of no Capgras. What is the best strategy for future caregiver needs? My dad cannot become homebound permanently but also does not feel comfortable with not telling her about upcoming visits. We met as a family with a dementia specialist who knew absolutely nothing about either condition and was not helpful at all! We have a call into doctor but are wait listed to get a call back. Have not found any resources to be helpful since the issues are different than Alzheimer’s.
Capgras Syndrome is becoming more common with folks with dementia, and how very sad that the "dementia specialist" didn't seem to know anything about it. I would certainly be talking to your moms doctors about putting her on some medications to try and keep her anxiety down to begin with as that will help as you bring in folks to help. And since your moms brain is now permanently broken, you can no longer reason with her about anything, so I would just plan on hiring folks that are familiar with working with folks with dementia as at least they won't take anything personal that your mom says or does. And your dad can just tell your mom that he's hired these folks to help him around the house so she doesn't feel that they're there because of her. Dementia is hard on all involved, and there are no easy answers. All you can do is try your best to make things a little easier for all involved. And I wish you well in doing just that.
Yes, you're right They are different: alike only in that there are few solutions that work, and that they are difficult to deal with. I think I would be inclined to hand the new caregiver as brief and succinct description of this disorder as I could create on a PDF file: what it is, what works for it (and your individual loved one). what doesn't.
When I came to Forum 5 yrs ago when I was slammed with a diagnosis of Lewy's for my brother, he had made me his POA and Trustee. I knew ZERO. It was one heck of a quick education. And that's how we all learn, usually: suddenly and the hard way. Your caregiver would thank you for a little briefing and it would be a wonderful thing to have, actually, for people who, in future, ask you "so what IS CAPGRAS (because why would they know, really)? Given how long careworkers now stay on one particular assignment, CAPGRAS will be problematic in that a happy and safe and TRUSTED environment is key. And trust is built over time.
Basically, you're looking at an unpredictable quality of life ongoing, and you are standing witness to the torment, desperate for solutions that are few and far between. KNOWING about CAPGRAS is a good deal different than knowing what solutions there are. Because, again sadly, there are very few--those solutions--whici is true of this diagnosis and with many dementias and mental illnesses. (I have a bipolar family member, so kind of know whereof I speak.)
My brother was diagnosed with his Lewy's by his symptoms with "probable early Lewy's Dementia by symptoms". Long diagnosis! He was competent in so many ways, and especially in knowing what was coming for him, and what could be done about it (nothing). He hoped to beat it by dying first and he did. As an RN, researching Lewy's, I was amazed how different it was from other dementias. So much up and down. So many times he seemed almost normal. Such vivid and real hallucinations.
I'm so sorry. Best you can do is educate others in so far as you are able. And understand the limitations that now will be a part of life ongoing. As Dr Laura says, not everything can be fixed. Until and unless they go through it, no one will have a clue what you are experiencing.
When you go to look up "treatments for CAPGRAS" the first thing you're met with when you type that into your search engine is this:
"Treatment for Capgras syndrome involves addressing the underlying psychiatric or neurological problem: Specific treatments may include: Taking antipsychotic medication to treat schizophrenia. Taking medication to treat dementia. Surgery or neurorehabilitation for traumatic brain injury. Creating a happy and welcoming environment. Using validation therapy that acknowledges the delusions without rejecting them5."
You likely already know just how much hope there is in that "treatment". So you are left with the conundrum faced by most on this Forum, and for most people who are dealing with mental illness in a family member. There are few answers. You expect the unexpected. No one will understand what you're faced with, nor will have the time nor inclination even to listen overly long (they are dealing with their own lives.)
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 would certainly be talking to your moms doctors about putting her on some medications to try and keep her anxiety down to begin with as that will help as you bring in folks to help.
And since your moms brain is now permanently broken, you can no longer reason with her about anything, so I would just plan on hiring folks that are familiar with working with folks with dementia as at least they won't take anything personal that your mom says or does.
And your dad can just tell your mom that he's hired these folks to help him around the house so she doesn't feel that they're there because of her.
Dementia is hard on all involved, and there are no easy answers. All you can do is try your best to make things a little easier for all involved.
And I wish you well in doing just that.
When I came to Forum 5 yrs ago when I was slammed with a diagnosis of Lewy's for my brother, he had made me his POA and Trustee. I knew ZERO. It was one heck of a quick education. And that's how we all learn, usually: suddenly and the hard way.
Your caregiver would thank you for a little briefing and it would be a wonderful thing to have, actually, for people who, in future, ask you "so what IS CAPGRAS (because why would they know, really)?
Given how long careworkers now stay on one particular assignment, CAPGRAS will be problematic in that a happy and safe and TRUSTED environment is key. And trust is built over time.
Basically, you're looking at an unpredictable quality of life ongoing, and you are standing witness to the torment, desperate for solutions that are few and far between. KNOWING about CAPGRAS is a good deal different than knowing what solutions there are. Because, again sadly, there are very few--those solutions--whici is true of this diagnosis and with many dementias and mental illnesses. (I have a bipolar family member, so kind of know whereof I speak.)
My brother was diagnosed with his Lewy's by his symptoms with "probable early Lewy's Dementia by symptoms". Long diagnosis! He was competent in so many ways, and especially in knowing what was coming for him, and what could be done about it (nothing). He hoped to beat it by dying first and he did.
As an RN, researching Lewy's, I was amazed how different it was from other dementias. So much up and down. So many times he seemed almost normal. Such vivid and real hallucinations.
I'm so sorry.
Best you can do is educate others in so far as you are able. And understand the limitations that now will be a part of life ongoing.
As Dr Laura says, not everything can be fixed.
Until and unless they go through it, no one will have a clue what you are experiencing.
When you go to look up "treatments for CAPGRAS" the first thing you're met with when you type that into your search engine is this:
"Treatment for Capgras syndrome involves addressing the underlying psychiatric or neurological problem:
Specific treatments may include:
Taking antipsychotic medication to treat schizophrenia.
Taking medication to treat dementia.
Surgery or neurorehabilitation for traumatic brain injury.
Creating a happy and welcoming environment.
Using validation therapy that acknowledges the delusions without rejecting them5."
You likely already know just how much hope there is in that "treatment".
So you are left with the conundrum faced by most on this Forum, and for most people who are dealing with mental illness in a family member.
There are few answers.
You expect the unexpected.
No one will understand what you're faced with, nor will have the time nor inclination even to listen overly long (they are dealing with their own lives.)
I am so sorry.