I’m new here but am reaching out for any information or support .
My Mother in law who was diagnosed with Parkinsons 15 years ago had a very bad fall 2 weeks ago. She fractured her temporal bone had a brain bleed, has stable fractures in neck and back. She was placed into a medically induced coma for 48 hours and was kept in ICU for 11 days.
She is now on a medical ‘elderly’ ward, still has a feeding tube in, but is barely coherent with speech and doesn’t move. She is static in the bed, we have checked she is getting her medications on time, the nurse showed us the log and says she has alarms but there is no improvement
The doctors are useless and give us no info. The parkinsons nurse had yet to visit the ward.
My husband is worried his mother has brain damage, but I am wondering if all the delays with speech and immobility is due to her Parkinsons and something being ‘missed’ by the doctors.
Her ‘normal’ is near constant movement when awake
I don’t know what I expect from writing this here, but we are lost and I’m reaching out to anyone who knows someone that has had ICU and prolonged hospital stays.
Hello @Scarletohara82 , welcome to the forum. We hope you find it a helpful community to connect, ask questions and share experiences with people who just get it.
We’re sorry to hear that your mother in law had a bad fall a couple of weeks ago and is now in the hospital. We understand this must be really hard for you and your husband. We’re glad you’re speaking to her doctors and nurses to check if she’s having her medication and sharing what her ‘normal’ is. We’ve got information on hospital stays on our website, which you might find helpful, which also includes information on managing medication: During your stay in hospital | Parkinson's UK
We understand that this is a distressing time, and it can be hard when you feel like you don’t have the answers or information for what is causing the change. You don’t have to navigate this alone. We’re at the end of the phone to help. You can call our free helpline and speak to our trained advisers, including specialist Parkinson’s nurses: 0808 800 0303. We’re open Monday to Friday: 9 am to 6 pm and Saturday: 10 am to 1 pm. We are closed for the bank holiday on Monday, but we will be open again on Tuesday.
Although you mention the doctors are useless, i do think a conversation with someone needs to be had about your MIL’s progress and future prognosis. Is there a social work team within the hospital? Make a list of things you are worried about and write them down e.g. is physiotherapy needed to help mobility or are the fractures a complication, same for speech and language therapy, is there an occupational therapist to talk about falls etc. Maybe answers to just a few questions might start to give some indications?
I don’t have any experience with ICU and PD but my dad with PD has suffered hundreds of falls over 20 years, some worse than others. He has also been admitted to hospital as a result of them, or other things such as cuts getting infected, various tests due to him feeling unwell, blows to the head and Covid having turned nasty. Each visit wasnt good, it always seemed to set him back a bit. He has suffered delirium, been treated for blood clots, suspected TIA, cancer testing, seizure and mental health referrals. Then the follow ups didnt kick in soon enough or it was a fight to get services. I also had a different relative who had a terrible fall, fractured a hip and wasnt able to be discharged home, only a care home. Even though the hip wasnt broken and didnt need operating, it physically hurt to walk and walking was never the same due to a limp.
You say your husband is worried about brain damage but PD itself is a brain disorder. The various things that have happened medically might be harder to treat, 15 years down the line with PD too.
I dont think its unreasonable that somebody at the hospital talk to you both.
I came across this older discussion and wanted to add that you might explore joining a local support group for families dealing with Parkinson’s. Sharing experiences and advice in person can be incredibly reassuring. Also, you could consider asking the hospital about palliative care services. They focus on improving quality of life, which might offer some comfort in understanding and navigating your family member’s current situation.
