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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?
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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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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.
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Please look online as they sell a big pad that has four handles at each corner that is put under the patient so that the caregiver can pull on the handles and turn the patient over. We had the same problem with my mom when she was in a hospital bed.
Tell his PCP, you want an order placed for hospice assessment and admit to hospice of your choice per hospice evaluation. This will give you in home support, RN, CNA, SW, Chaplain etc etc to help you not only with daily care but SW will also be able to help you assess facility options if you choose. Also equipment will be provided by hospice in the home with instructions how to use as assessed by the RN Case Manager assigned. Also you can send him to hospice respite care to give yourself a break and let them assess him further while there ( 5 days paid for by hospice).
Or tell his PCP you need him admitted to a skilled care facility ASAP. Get a case manager assigned to you to help find facility care for him.
You cannot do this alone. Do not let him nor anyone guilt trip you. Get Help ! Today !
Is this a problem in the morning when he's trying to get out of bed? This could be a morning off period until his morning meds kick in. Several options here- how about an extended release med at night so he still has dopamine in his system in the morning....or wake up earlier just to take a med in bed and then try to get up after the meds kick in. Try sheets and bedclothes that are like satin...slippery so there's less friction in moving. Also have a pole from floor to ceiling installed next to the bed so he can grab it and use it to help pull himself up. These are sold on medical equipment stores or online. Discuss this with an Occupational Therapist for additional ideas. He must have other issues that could could benefit from so m e professional advice.
We have the oasis bar/ handle on side of bed. Also use satin sheets. Takes ER sinemet going to bed. goes to pt my fear is the parkinsons is progressing. Heartbreaking maybe just take more sinemet; seems to always be the answer.
P.S. Addendum to my earlier response: If your husband is assessed by hospice and determined to be not yet hospice appropriate, the physician can certainly refer you to In Home Care agencies. In fact some hospice entities also have a division of " in home care" that serve patients until / if they become hospice appropriate. And do not let the PCP tell you whether your husband is hospice appropriate or not! Only the hospice evaluation by the hospice RN determines " hospice appropriateness ". It is the up to you and ( if your husband is A/ O ) you and your husband decision if you want to accept hospice care. Remember hospice is not about dying; hospice is about patient and family quality of life in the midst of a life limiting illness .
You have choices: 1. Hospice ( you can also call a local hospice of your choice and talk with Clinical Supervisor about your situation. They will be glad to speak with you and follow up as you both decide). 2. In Home Health Care Services 3. Placement in facility care 4. If husband is veteran, veteran in home care services or other care. Contact VA. 5. Call 911 and have him transported to ER . 6. Call his PCP, today, tell him/ her you need help !!!
I have read through just a ton of good advice on this thread, Kk92, and I hope you will return with a response as to whether any of this was of help to you?
That said, my concern here is for YOU. Given the weight, and whether or not you have a bed with adjusting height, I am worried for your back. No matter how carefully we nurses practiced "body mechanics" and no matter how many assistive devices we had, I don't know a single one of us who did not retire with "old nurse's back".
An injury to you in attempting exemplary care will mean no caregiver whatsoever for your husband. You would likely not even be able to be sufficiently active to find a good facility for him.
And without sufficient turning and with obesity, a decubitus cannot be avoided that I can see. These can be deadlyl.
As hard as it is to do, to admit, I am wondering if this is not the time to consider long term care?
I am confused as to why you are asking this question 'now' - wondering how long this has been an issue / concern? Why haven't you called his MD about this before now?
Clearly, you need medical intervention. In addition to calling his medical provider, read this:
Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions.
The Parkinson's Foundation Helpline is open Monday through Friday from 9 a.m. to 7 p.m. ET. We can assist you in either English or Spanish. You can also email us with a question at any time: Helpline@Parkinson.org or interact with us and the Parkinson's community at large on PD Conversations.
Simply by googling, I found this - I question why you haven't reached out to them SOONER?
Staffed by nurses, social workers and health educators, the Parkinson's Foundation Helpline is here to support you in any possible way, including:
Current disease information
Medical issues including symptoms and treatments
Health and social care
Referrals to health professionals and community resources for local support
Frequently Asked Questions
The Parkinson’s Foundation Helpline welcomes calls from people with Parkinson’s disease, their families, friends and health care providers at 1-800-4PD-INFO (1-800-473-4636).
Helpline specialists answer calls about all aspects of Parkinson’s disease (PD) and can help recommend specific Parkinson’s Foundation resources that can help you. These are the most frequently asked questions our Helpline receives:
Who will I be talking to if I call 1-800-4PD-INFO?
What makes the Parkinson’s Foundation Helpline unique?
What are my options when I dial 1-800-4PD-INFO?
What general information is available?
What referrals do Parkinson’s disease specialists provide?
I cared for my mom who had Parkinson’s disease. As the disease progresses, mobility becomes more challenging. How far along is your husband’s Parkinson’s disease?
Please speak with your husband’s doctor about ordering home health. It makes a big difference.
Mom never had a weight issue. In fact, she was very thin. I’m sure that your husband’s weight is making his situation more difficult but thin people like my mom struggled too.
Parkinson’s disease is a neurological disorder and even though the brain gives the signal to move, the body begins to lose it’s ability to follow signals that are sent from the brain.
People who have Parkinson’s disease struggle with strength and balance. Home health will focus on a program that is designed specifically for Parkinson’s patients. They send an occupational therapist and a physical therapist. You need both of them.
I gave my mom’s therapists a list of the most difficult things that she struggled with. The occupational therapist went into my mom’s room and gave mom and I useful instructions. She even rearranged mom’s furniture to make things easier for her. I ordered a railing for mom’s bed so she could have something to hold onto while moving to get out of the bed.
The physical therapist worked on strengthening mom’s core muscles and balancing issues. Mom was in her 90’s and showed improvement so don’t lose hope.
I will say that my mom worked really hard in home health and rehab and her results were good.
I would be concerned about pressure sores due to lack of mobility. Mom dealt with those and the home health nurse was excellent in treating them. She happened to be a trained in wound care before doing home health.
Home health also sends an aide to help with bathing.
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.
https://parkinsonsocialnetwork.org/2018/10/26/rolling-over-in-bed/
Have you discussed this with his doctor or Physical Therapist?
Also you can send him to hospice respite care to give yourself a break and let them assess him further while there ( 5 days paid for by hospice).
Or tell his PCP you need him admitted to a skilled care facility ASAP. Get a case manager assigned to you to help find facility care for him.
You cannot do this alone. Do not let him nor anyone guilt trip you.
Get Help ! Today !
goes to pt
my fear is the parkinsons is progressing. Heartbreaking
maybe just take more sinemet; seems to always be the answer.
Addendum to my earlier response:
If your husband is assessed by hospice and determined to be not yet hospice appropriate, the physician can certainly refer you to In Home Care agencies. In fact some hospice entities also have a division of " in home care" that serve patients until / if they become hospice appropriate. And do not let the PCP tell you whether your husband is hospice appropriate or not! Only the hospice evaluation by the hospice RN determines
" hospice appropriateness ". It is the up to you and ( if your husband is A/ O ) you and your husband decision if you want to accept hospice care. Remember hospice is not about dying; hospice is about patient and family quality of life in the midst of a life limiting illness .
You have choices:
1. Hospice ( you can also call a local hospice of your choice and talk with Clinical Supervisor about your situation. They will be glad to speak with you and follow up as you both decide).
2. In Home Health Care Services
3. Placement in facility care
4. If husband is veteran, veteran in home care services or other care. Contact VA.
5. Call 911 and have him transported to ER .
6. Call his PCP, today, tell him/ her you need help !!!
Peace.
That said, my concern here is for YOU. Given the weight, and whether or not you have a bed with adjusting height, I am worried for your back. No matter how carefully we nurses practiced "body mechanics" and no matter how many assistive devices we had, I don't know a single one of us who did not retire with "old nurse's back".
An injury to you in attempting exemplary care will mean no caregiver whatsoever for your husband. You would likely not even be able to be sufficiently active to find a good facility for him.
And without sufficient turning and with obesity, a decubitus cannot be avoided that I can see. These can be deadlyl.
As hard as it is to do, to admit, I am wondering if this is not the time to consider long term care?
Clearly, you need medical intervention. In addition to calling his medical provider, read this:
Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions.
The Parkinson's Foundation Helpline is open Monday through Friday from 9 a.m. to 7 p.m. ET. We can assist you in either English or Spanish. You can also email us with a question at any time: Helpline@Parkinson.org or interact with us and the Parkinson's community at large on PD Conversations.
Simply by googling, I found this - I question why you haven't reached out to them SOONER?
https://www.parkinson.org/resources-support/helpline
Staffed by nurses, social workers and health educators, the Parkinson's Foundation Helpline is here to support you in any possible way, including:
Current disease information
Medical issues including symptoms and treatments
Health and social care
Referrals to health professionals and community resources for local support
Frequently Asked Questions
The Parkinson’s Foundation Helpline welcomes calls from people with Parkinson’s disease, their families, friends and health care providers
at 1-800-4PD-INFO (1-800-473-4636).
Helpline specialists answer calls about all aspects of Parkinson’s disease (PD) and can help recommend specific Parkinson’s Foundation resources that can help you. These are the most frequently asked questions our Helpline receives:
Who will I be talking to if I call 1-800-4PD-INFO?
What makes the Parkinson’s Foundation Helpline unique?
What are my options when I dial 1-800-4PD-INFO?
What general information is available?
What referrals do Parkinson’s disease specialists provide?
Please speak with your husband’s doctor about ordering home health. It makes a big difference.
Mom never had a weight issue. In fact, she was very thin. I’m sure that your husband’s weight is making his situation more difficult but thin people like my mom struggled too.
Parkinson’s disease is a neurological disorder and even though the brain gives the signal to move, the body begins to lose it’s ability to follow signals that are sent from the brain.
People who have Parkinson’s disease struggle with strength and balance. Home health will focus on a program that is designed specifically for Parkinson’s patients. They send an occupational therapist and a physical therapist. You need both of them.
I gave my mom’s therapists a list of the most difficult things that she struggled with. The occupational therapist went into my mom’s room and gave mom and I useful instructions. She even rearranged mom’s furniture to make things easier for her. I ordered a railing for mom’s bed so she could have something to hold onto while moving to get out of the bed.
The physical therapist worked on strengthening mom’s core muscles and balancing issues. Mom was in her 90’s and showed improvement so don’t lose hope.
I will say that my mom worked really hard in home health and rehab and her results were good.
I would be concerned about pressure sores due to lack of mobility. Mom dealt with those and the home health nurse was excellent in treating them. She happened to be a trained in wound care before doing home health.
Home health also sends an aide to help with bathing.
Best wishes to you and your husband.