My husband is 76, PWP for 13 years. Treated all this time without incident until 2020 after contracting West Nile and Eastern Equine encephalitis. He survived, went from hospital to acute rehab for 2 weeks. Regained all motion and was left w very mild cognitive deficits. His PD became more symptomatic, had to use cane than walker for stability. Last year we noticed more problems w executive function and 2 weeks ago underwent testing for dementia. Diagnosed mild dementia. Our Neurologist is a movement specialist at a world-renowned center of excellence for Parkinson’s movement disorders. As recently as 2 weeks ago he began having more difficulty getting up from chair, out of bed. 3 days ago, was unable to stand and bear weight and experiencing leg and back pain off and on. Called 911; was admitted to hospital that day for testing. All testing ok. That evening I received a frantic call from nurse that he was very agitated and kept trying to leave, asked if he had ever behaved like this before; the answer was No, but for the time of a UTI and during west Nile. They gave him a shot of Haldol to calm him down (not recommended for PD patients). The next day his demeanor was normal. Hospitalist recommended after his stay he go into acute rehab to regain leg strength. I agreed. Today he was rejected by rehab facility on grounds he had a chronic condition and had been treated there before with this condition (exacerbated by west Nile). It was also mentioned that our excellent healthcare policy was difficult to deal with re: acute rehab. We had same policy for years.
My husband is tall and 210 lbs. I cannot lift him, neither can our current part time day caregiver. He needs a stay in rehab. I am so frustrated and just don’t know what to do. Can anyone suggest anything. We live in AZ. Medications are well managed.
Suggestions are so appreciated.
Wow, I’m so sorry that you are going through this unfortunate situation with your husband.
I cared for my mom who had Parkinson’s disease. I can empathize with you. It’s hard to watch someone that we love dearly decline with this awful, progressive disease.
I would have questions for the rehab facility that turned your husband down.
My mom did rehab and several stints in home health when she was in her 90’s.
My mom went from using a cane to a walker. She was never in a wheelchair though. She also had trouble getting up from a chair and out of bed.
We were fortunate that my mom always improved after rehab and home health sessions.
They work specifically with Parkinson’s patients to regain strength and work on balancing issues. I was amazed at how hard my mother worked in rehab and home health.
As you know, Parkinson’s disease affects everyone differently so your husband may be different.
The final stages of Parkinson’s disease are quite challenging and can be brutal for some people. My mom was prescribed Seroquel and Ativan in her later years to help calm her.
The physical therapists are fantastic and so are the occupational therapists who helped my mother tremendously by teaching her how to get out of a chair and bed.
The occupational therapists even had me rearrange her furniture differently in her bedroom so that she could move about more easily.
One thing that I have always done is to immediately go to my mother’s doctor if I was having an issue with insurance.
You would be surprised at how much a letter from a doctor’s office can help. Mom’s neurologist and primary doctor were always willing to assist me in getting something approved by her insurance company.
Best wishes to you and your husband. My heart goes out to you. My wish is that someday there will be a cure for this dreadful disease.
My mom also developed dementia in her later years. She died peacefully at age 95 in an ‘end of life’ hospice care home.
I think the wrong person reviewed your husbands medical records. Better than an Advocate, who should know all the in and outs, deal with the insurance company.
But, be aware that DHs Parkinson may be worsening. That no amount of rehab will "fix" him. He has to be able to remember the exercises and understand directions. At this point while he is in rehab, I would have him evaluated for 24/7 care. If found he is now a 2 person assist and needs care for most of his ADLs, this would be the time to place him in Long-term care. Not AL or MC, his care is too much for them.
If u think you will be going this way or may in the future then I would see an elder lawyer about splitting ur assets. DHs split would go towards his care. This way, your not using all your savings on his care.
She accepted the sub-acute rehab and her neurologist and husband advocated relentlessly with her insurance company for a transfer to acute. She then worked her butt off in the sub-acute facility to prove to the therapists (who then documented to insurance) that she COULD handle acute rehab.
Is there any chance someone didn’t give the right dosage, right timing, of the PD medicine? That can create intense pain and all sorts of trouble. (It’s like withdrawal symptoms.) PD medicines are very powerful: if you miss a dose, you get into withdrawal.
I hope you can get him into another rehab.