It doesn't matter what he will agree to do. YOU must get better care for him and YOU need to take charge before he dies in YOUR care. This is not fair to him, his caregivers or YOU.
You could ask his doctors to intervene and inform him that he's past the point where he can remain at home. His condition requires specialized care, and you deserve your life back. I'm very sorry and wish you luck in finding just the right place.
Perhaps it is time for a facility. As a retired clinical health staff member…we watched many spouses die before the patient due to high stress and the illnesses that began after the spouse got ill. A 200# man who can not roll or walk alone needs specialized care. Sometimes we must save ourselves! He sounds like a long term care patient. Good Luck.
He would never agree to a facility u sister is a retired nurse and has told me hes probably a candifor a nursing home. even with help at our house it’s getting very difficult because of his mobility or lack of- freezes all the time and falls frequently.
Have you looked in to one of these? (It's an alternating pressure air mattress) There are some good reviews....some people are saying that even through they stay in the same position all night, they get a good sleep...others are saying that some bed sores have gone away, and new ones have not developed:
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?
Look up YouTube videos called “rolling a patient in bed and look up devices on Amazon. It would be best if you have a home health aide to assist with this. Sometimes a sheet is used also.
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.
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 know we all want to keep our loved one home. No one wants to go into a facility. BUT.... If it becomes unsafe for you to care for someone at home the decision to place someone in Skilled Nursing, Memory Care, Assisted Living has to be considered. If you can not manage to care for him at home without the possibility of YOU getting hurt or him getting hurt then the safest thing to do is to find a place that can safely care for him. OR You can ask the doctor to order equipment that will allow you to care for him safely. A Sit to Stand or a Hoyer Lift. OR If your husband qualifies for Hospice you can contact a Hospice of your choice and they will provide all the equipment that you need. That will ensure that he is safe but you have to also consider your mental and emotional safety continuing to care for him. With Hospice you will still be doing 99.99% of the care needed.
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 !!!
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 !
Do you have any caregivers coming in to help? If possible you need help before you injure yourself because your husband will decline further.
For my mom a split shift worked yes even from an agency. She had a 10-2 shift and then a 5-9. She slept late and then took afternoon naps. You need someone strong able to move him and willing to accommodate his schedule. Mom had two caregivers some days. It hurts nothing to ask.
While the caregivers are with him make plans for lunch with a friend, go to the library or something for yourself! You need breaks before you lose your mind.
I have a friend that hires her caregiver to ride along on outings to get her husband out. It helps so much.
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.
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.
My Mom had one. It helped her pull herself up from a laying position. Then gave her support when standing up. Your husband could use it to help him roll over. Price is good. I paid over $100.
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.
You could ask his doctors to intervene and inform him that he's past the point where he can remain at home. His condition requires specialized care, and you deserve your life back. I'm very sorry and wish you luck in finding just the right place.
even with help at our house it’s getting very difficult because of his mobility or lack of- freezes all the time and falls frequently.
https://www.amazon.com/Vive-Alternating-Pressure-Mattress-Inflatable/dp/B00TZ73MUY/ref=sr_1_1_sspa?crid=6HE1HTNPP8GY&keywords=air+mattress+for+eliminating+bed+sores&qid=1685298842&sprefix=air+mattress+for+eliminating+bed+sores%2Caps%2C166&sr=8-1-spons&ufe=app_do%3Aamzn1.fos.006c50ae-5d4c-4777-9bc0-4513d670b6bc&psc=1&smid=A164XQT7IPAAIU&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzRjBLU1JXV0JYRlVCJmVuY3J5cHRlZElkPUEwMjQ2NjAxMzBNUjZRNERWTUE3MiZlbmNyeXB0ZWRBZElkPUEwNTI4NTUxS1pZRkM1NVZIQjdUJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==#customerReviews
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?
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.
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?
No one wants to go into a facility.
BUT....
If it becomes unsafe for you to care for someone at home the decision to place someone in Skilled Nursing, Memory Care, Assisted Living has to be considered.
If you can not manage to care for him at home without the possibility of YOU getting hurt or him getting hurt then the safest thing to do is to find a place that can safely care for him.
OR
You can ask the doctor to order equipment that will allow you to care for him safely. A Sit to Stand or a Hoyer Lift.
OR
If your husband qualifies for Hospice you can contact a Hospice of your choice and they will provide all the equipment that you need.
That will ensure that he is safe but you have to also consider your mental and emotional safety continuing to care for him. With Hospice you will still be doing 99.99% of the care needed.
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.
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 !
For my mom a split shift worked yes even from an agency. She had a 10-2 shift and then a 5-9. She slept late and then took afternoon naps. You need someone strong able to move him and willing to accommodate his schedule. Mom had two caregivers some days. It hurts nothing to ask.
While the caregivers are with him make plans for lunch with a friend, go to the library or something for yourself! You need breaks before you lose your mind.
I have a friend that hires her caregiver to ride along on outings to get her husband out. It helps so much.
goes to pt
my fear is the parkinsons is progressing. Heartbreaking
maybe just take more sinemet; seems to always be the answer.
https://www.amazon.com/OasisSpace-Seniors-Adjustable-Prevention-Handicap/dp/B07R4LMWMJ/ref=asc_df_B07R4LMWMJ/?tag=hyprod-20&linkCode=df0&hvadid=507663052233&hvpos=&hvnetw=g&hvrand=16546088072445644593&hvpone=&hvptwo=&hvqmt=&hvdev=t&hvdvcmdl=&hvlocint=&hvlocphy=9003829&hvtargid=pla-1252283123236&psc=1
My Mom had one. It helped her pull herself up from a laying position. Then gave her support when standing up. Your husband could use it to help him roll over. Price is good. I paid over $100.
https://parkinsonsocialnetwork.org/2018/10/26/rolling-over-in-bed/
Have you discussed this with his doctor or Physical Therapist?