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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?
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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.
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Mostly Independent
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She goes to PT twice a week and is currently on a dopamine supplement. What signs should I look for in her daily activity … this is all very new to me.
One important first step, if she takes levodopa it should always be on time all the time. Of course everybody forgets, but if she has bad memory she needs help. You should consider how you want to be involved because it could potentially be 20 years of progressive and horrible disease.
Nobody knows what to expect with Parkinson’s disease. Most experts say progression is different for each person. On average each stage is about 2.5 years except for stage 2 which is 5 years, stage 1 could be years as well as generally people are diagnosed long after they developed PD. My husband was diagnosed in 2015, but he already had symptoms as early as 2011. For the first 5 years he was in very good shape and we ignored this disease. He took levodopa, exercised a lot. He is or was very healthy and in excellent physical shape. We were not in denial but concentrated on living well, travel etc. lived very normal life. I would not change that as it would not make a difference. My husband’s PD progressed about 4 years ago and now he is in advanced stage however he does not have dementia whatsoever. His motor skills are diminishing at alarming speed now and levodopa is not working effectively. Further testing will establish what other conditions are causing sudden deterioration. There is 5 stages of PD and not many people live to reach final stage as they succumb to other diseases or die of falls or aspiration pneumonia. It is horrible, cruel disease, no cure, but it is not deadly, generally people live normal life span and disease can last 20 years or more, average is 16 years. At late stage, which is defined as stages 4 and 5, about 40% develop dementia as well. At initial exam neurologist would establish if there was Lewy Body which is similar to PD except cognitive changes happen before motor skills are impaired.
Bad memory doesn't come with Parkinson's, but Lewy Body dementia which is often associated with Parkinson's does. And bad balance is also associated with Lewy Body. I would have her reevaluated, so you and your family know exactly what you're dealing with, as she may have both Parkinson's and Lewy Body dementia. She probably shouldn't be living alone if she is now a fall risk and has a bad memory, so you may need to start looking into assisted living facility options for her, with a memory care attached for down the road. And of course there is a lot of information on the internet about Parkinson's and Lewy Body dementia, so you can gain a lot knowledge from that. Wishing you and you mother well.
You are where we all are when we first get started. Feeling helpless. In a kind of shock.
Parkinson's Disease has an absolute WEALTH of information online, as well as many organizations that are absolutely bursting with information. So it is a matter now of accessing that information. I remember when my brother first became ill with Lewy's Dementia. I honestly had NO information about it, and that despite being a Nurse. I also had no idea how to be a POA and Trustee of Trust which is what I became in one afternoon! Take heart. It is a bumpy first year gathering information, but information is what will help you. Know that soon you and your mom need to see an elder law attorney, get an immediate POA, get will updated, get assets evaluated, get advance directives done.
There are, if you are at all on Facebook, many pages that have groups to join as a caregiver of someone with Parkinson's.
If you have supportive family, friends, faith based community, get them together to inform and to ask for help when you need it.
For now, be easy on yourself. Start learning online with youtube and googling and facebook and other support groups. I do remember that one parkinson's . org page has a good forum; can't remember where it was.
And this! Do understand that your mom isn't suddenly "a diagnosis" and you are still her "daughter" tho that becomes complicated with being also a caregiver as well; the emotional toll can be overwhelming at times, so look on it as a weather system that will come and go. Your Mom is facing a lot of loss of control issues that won't always make her pleasant to witness.
Learn to bend, as "the bow too tightly strung is easily snapped". Learn to know that mom isn't a disease, but a person, and her problems will be unique to her as her own thumbprint. Don't be too tough on yourself. Know that the anxiety will be awful for a while for both of you. Take deep breathes. Expect the unexpected.
Come here with each individual problem and we will try to help. Know that you are not alone. I am so sorry you are both facing this. Be honest with one another. Don't try to take on more than you are able.
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.
You should consider how you want to be involved because it could potentially be 20 years of progressive and horrible disease.
Most experts say progression is different for each person.
On average each stage is about 2.5 years except for stage 2 which is 5 years, stage 1 could be years as well as generally people are diagnosed long after they developed PD.
My husband was diagnosed in 2015, but he already had symptoms as early as 2011.
For the first 5 years he was in very good shape and we ignored this disease. He took levodopa, exercised a lot. He is or was very healthy and in excellent physical shape.
We were not in denial but concentrated on living well, travel etc. lived very normal life.
I would not change that as it would not make a difference.
My husband’s PD progressed about 4 years ago and now he is in advanced stage however he does not have dementia whatsoever.
His motor skills are diminishing at alarming speed now and levodopa is not working effectively.
Further testing will establish what other conditions are causing sudden deterioration.
There is 5 stages of PD and not many people live to reach final stage as they succumb to other diseases or die of falls or aspiration pneumonia.
It is horrible, cruel disease, no cure, but it is not deadly, generally people live normal life span and disease can last 20 years or more, average is 16 years.
At late stage, which is defined as stages 4 and 5, about 40% develop dementia as well.
At initial exam neurologist would establish if there was Lewy Body which is similar to PD except cognitive changes happen before motor skills are impaired.
I would have her reevaluated, so you and your family know exactly what you're dealing with, as she may have both Parkinson's and Lewy Body dementia.
She probably shouldn't be living alone if she is now a fall risk and has a bad memory, so you may need to start looking into assisted living facility options for her, with a memory care attached for down the road.
And of course there is a lot of information on the internet about Parkinson's and Lewy Body dementia, so you can gain a lot knowledge from that.
Wishing you and you mother well.
Parkinson's Disease has an absolute WEALTH of information online, as well as many organizations that are absolutely bursting with information.
So it is a matter now of accessing that information.
I remember when my brother first became ill with Lewy's Dementia. I honestly had NO information about it, and that despite being a Nurse.
I also had no idea how to be a POA and Trustee of Trust which is what I became in one afternoon! Take heart. It is a bumpy first year gathering information, but information is what will help you.
Know that soon you and your mom need to see an elder law attorney, get an immediate POA, get will updated, get assets evaluated, get advance directives done.
There are, if you are at all on Facebook, many pages that have groups to join as a caregiver of someone with Parkinson's.
If you have supportive family, friends, faith based community, get them together to inform and to ask for help when you need it.
For now, be easy on yourself. Start learning online with youtube and googling and facebook and other support groups. I do remember that one parkinson's . org page has a good forum; can't remember where it was.
And this! Do understand that your mom isn't suddenly "a diagnosis" and you are still her "daughter" tho that becomes complicated with being also a caregiver as well; the emotional toll can be overwhelming at times, so look on it as a weather system that will come and go. Your Mom is facing a lot of loss of control issues that won't always make her pleasant to witness.
Learn to bend, as "the bow too tightly strung is easily snapped".
Learn to know that mom isn't a disease, but a person, and her problems will be unique to her as her own thumbprint.
Don't be too tough on yourself.
Know that the anxiety will be awful for a while for both of you. Take deep breathes.
Expect the unexpected.
Come here with each individual problem and we will try to help.
Know that you are not alone.
I am so sorry you are both facing this. Be honest with one another. Don't try to take on more than you are able.