How do I get help for my husband who has cerebral palsy?

A medicare program, state by state is PACE.
perhaps free or if you have money pay a fee

Program of All-Inclusive Care for the Elderly (PACE)
 
PACE provides comprehensive medical and social services to certain frail, elderly people (participants) still living in the community. Most of the participants who are in PACE are dually eligible for both Medicare and Medicaid. 
www.medicaid.gov
in states
The Program of All-Inclusive Care for the Elderly (PACE) benefits include, but are not limited to, all Medicaid and Medicare covered services:

Adult day care
Dentistry
Emergency services
Home care
Hospital care
Laboratory/x-ray services
Meals
Medical specialty services
Nursing home care
Nutritional counseling
Occupational therapy
Physical therapy
Prescription drugs
Primary care (including doctor & nursing services)
Recreational therapy
Social services
Social work counseling
Transportation
PACE also includes all other services determined necessary by the health professionals team to improve and maintain an individual’s health. PACE programs provide services primarily in an adult day health center and are supplemented by in-home and referral services in accordance with the enrollee’s needs.

You can get help to modify your home. Check local department on aging, churches, outreach ministries (folks that will remodel for those in need), Habitat for Humanity...

HOWEVER, you really need somebody with him that can manage his physical needs. Since you can not lift him, there are a couple of routes to go:
Hire home health aides who can help with his care and are able to lift him. They will need to be there when he is usually out of the bed - about 14 hours daily.
Get him into an Adult Day Program (usually Monday Friday during work hours) to care for his needs. Check nursing homes and local businesses. You will also need home health aides for the weekends and the evenings.
Full time residential care. If you can not afford either of the above, then he needs to move into a full time residential facility. Not to be mean but safety needs to be considered above desire.

rsmith1818: Please do not cause injury to your body in the effort to abide by your husband's wishes to not be placed in a nursing home. Oftentimes, wishes akin to those cannot be kept, else you sustain injury in attempting to doing so. Ergo, you will be good to no one.

This is a P.S. to what I wrote before. At one point my husband couldnt get out of bed by himself, or in, and slept in a chair for 3 nights. I went online to Amazon and found a "gadget" (having a senior moment and cant recall what it is called; maybe a bed rail) that is like a rail you hold on to to get in and out of the bed. It is easy to put on, as it has a tie that you tie under the mattress that keeps it in place. It's very sturdy, not very expensive, and really does the trick for helping to get in and out of bed.

1. Talk with his PCP, explain needs, get PCP to refer you to a case manager, usually a licensed social worker who can ( should be able to...some not as good as others) help you navigate systems.

2. Contact CP foundations, see what assistance programs if any they offer

3. If he is a veteran, contact VA ; they should have some in home assistant financial help
" Aid & assistance"

4. Contact community/ local senior " day care" services: they may be able to have him come to " Senior Day Care" ....
this would potentially help you both when working and on your days not working the could still go to give you a break if you both agree.

5. Talk with PCP to get referral for medical alert systems ( like seniors wear ) to alert 911 or appropriate parties if when he falls or has other medical emergency.

6. If you are at home and he falls, usually local fire department will come at no charge and assist lifting the person who has fallen back into chair or bed ; or they can call other 911 services if needed.

7. Some senior agencies have financial assistance programs for certain number hours a week.....programs vary so you would need to learn about these......a capable Social Worker should know what is available.

8. And, last but not least, he may not " want to be in a facility" but sooner or later you may be facing this decision for safety reasons......

Remember to get self care for yourself..... practice self care....and be sure all POA paperwork is signed and in place designating you ( or whoever) is going to have authority to make decisions for him if/ when day comes.... Also for yourself.....
Who will provide care for him if you get sick, injured or are not available???
Making hard decisions like different living arrangements,
may be best done while you are able also.

My husband, (who also has cerebral palsy) has worked for and with “The Center for Independent Living”.

In NY, it was a tri-county nonprofit. He’s also worked with a different branch, here in Florida.

Try googling them.

Although my husband is not ill, he is 100 years old and not mobile. During one of his frequent falls,a friend who was present suggested I call 911 and that they would send the local EMT over to help pick him up. (I am 83, with a bad back and could no longer do it). They come quickly and after picking the person off the floor, do some testing (blood pressure, etc.) to make sure the person didn't have a stroke. Once when he cut his head and was bleeding, they assured me it was a superficial wound and he didnt have to go to the hospital. I'm sure there's a comparable service where you live. Just dial 911 to find out.

In addition to putting grab bars everywhere, surrounds to hold on to around the toilet (I got the materials on Amazon), an OT from the Visiting Nurses Service got him a portable commode through Medicare, so he doesn' t have to get out of bed and walk to the bathroom in the middle of the night. In addition to providing in-home nursing care, the VNA (The Visiting Nurses Association) provides OT and PT in the home. Perhaps your PC doctor could write a prescription for the VNA to visit. (I got the VNA through a Hematologist, because my husband needed infusions of Retocrit to deal with a red blood problem). I think Medicare pays for the VNA's visits, but Im not sure if it's Medicare or insurance).

I know how overwhelmed you must feel. My husband went from driving a car at 96 to complete immobility during the Pandemic, and also had a small stroke which impaired his vision. It feels overwhelming when you view the entire litany of problems that need addressing, but it really can be resolved one issue at a time. The important thing is to get HELP!!!!! And don't get overwhelmed. Take it one day at a time.

Good Luck, and take care of yourself as well....

https://www.jocogov.org/department/aging-and-human-services/johnson-county-area-agency-aging

Ask for help everywhere you go....................network!

You may want to have a discussion with his primary. Some practices have social workers to help advise on options where you live. If he is eligible for medicaid there are accommodations for in home assistance. This would be great for the days you work.

In the meantime when he falls call rescue for a lift ( no charge). The wear and tear on your body will catch up to you. You cannot afford to be injured.

I wonder with his diagnosis if he could get massages at home to help with his flexibility.

I would locate your states Agency on Aging, in my moms state it falls under Health and Human Services, call them and they will help guide you to where and how to get assistance both physical and financial. I would also get in touch with his doctor so you are approaching things from both ends at once.

Your County should have a Disabilities dept. They may be able to help with modifications and other resources.

I so hope that he has gotten some help prior. The problem with Baby boomers, the help was not there when we were growing up. There was not help for parents. I often wonder how some of the "challenged" children then would be now if they had gotten the help children get now. My DH was hard of hearing from 4 up. He got no help or sympathy from the school system then. He had one counselor make him take an IQ test 3x because he thought my DH wasn't that intellegent. He showed that counselor by being an honor student.

Maybe some physical therapy would help ur husband.

I fully understand that your husband doesn't want this move into a nursing home, but R, if you are injured, what THEN for him? You can literally kill yourself attempting care you are not able to do anymore, and at the least can disable yourself, perhaps permanently.

It is time now to have the hard talk with husband. I hope there is other family support to help in this. It's important now that he be safely placed for his good as well as for yours, and so that you can remain his visiting loving companion and support.

See your husband's MD and discuss with him ASAP where you are in the caregiving cycle. Consider an appointment with an elder law attorney to discuss placement costs and division of assets for protection of funds you may require in future.

I cannot imagine enough in-home help to prevent his placement but you need solid help and advice now. I am so sorry for you both.

I am sorry you & your husband have problems.

Have you mentioned your difficulties to your local Doctor? Maybe get a referral for home Physio? A Home visit by an qualified OT may help too, with equipment to help. An electric bed to sit up, the right walking aid, grab rails in the right places etc. Maybe even a wheelchair.

Your town/council area may have a needs assessment service? See if any home help is available to you?

Wishing you strength for the road ahead.