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Looking for advice for my father
I apologize if this is not the correct forum. I myself have not had a stroke, but my father had a hemmhoragic stroke last week on 11/13. He is 74 years old.
Of course my entire family is looking for advice about what to expect, how to proceed, and how to provide the best possible care and give my father the best chances for the most complete recovery.
My father is in Strong Memorial Hospital in Rochester, NY. The staff has been great, and my step-mother is able to vist almost every day. If it wasn't for COVID I would be at my fathers bedside right now.
I am concerned about long term care. I am considering transferring him to a different hospital. I am not sure if this would be a good idea. It is still early and I don't know what I'm doing.
It has only been a week and he is on and off a ventilator. On for three days, off for three days, then back on for three days. We think he had pneumonia but it was caught and treated early and not too serious. Hopefully off the ventilator again on Monday. Of course between the stroke and the ventilator he can't communicate verbally.
Are there any standardized gestures that we can use to communicate? I am a little frustrated that the hospital has not provided any guidelines about how to encourage physical communication. My stepmother uses hand gestures, the nurses have different gestures, or sometimes a YES/NO sign for him to point to. They say his responsiveness is inconsistent, but I'm not suprised since the interactions are also inconsistent.
Thank you in advance for any advice you can offer. I apologize again if this is not the right forum. If so, please point me in the right direction. I hope everyone reading this is doing well and making progress and coping with their "new normal".
AHAASAKatie, November 23, 2020 9:50am EST
Good morning, my heart goes out to your family during this time. It must be very ******* all of you. I can share what we have on what happens now, how to choose a good facility and the basics of what could happen next.
I do not normally share the health care provider rehab series, but my thought is your family is struggling a bit with what the medical community is doing and why, so I am hoping these will help you as well.
Please know that we are here to listen and help support your entire family.
JKViggiano, November 23, 2020 1:34pm EST
Hi Dana. So sorry to read about your dad. I have a couple tidbits I hope will be helpful for you.
1. I think the most consistent, frustrating response from the medical community to any stroke question is "Every stroke is different." Even though it is true, it is very difficult to hear when you are in crisis mode, have no foundational understanding of stroke, and have 1,000 questions regarding what is coming.
2. Your dad is in the early early early stages of recovery. When my husband was in those early days, nothing was consistent. He didn't always know who we were. Sometimes he understood words but not always. It was scary. It got better over time but it took patience and calm and lots of experimentation.
3. Is there a social worker at the hospital who can guide you through the process? In my husband's case, he was in the hospital for a week then moved to a rehab hospital. He had intensive rehab for 3 weeks (all our insurance would pay for) then home where we had several weeks of in-home therapy. Then it was up to me and once per month therapy visits. My social worker was very helpful in laying out how things worked with hospitals and therapy. I hope you have a good one too.
4. Remember that your dad has a serious brain injury. People tend to understand brain injury if it is a result of a car accident, or a football injury, or a nasty fall. Stroke is no different, there just wasn't a traumatic event leading up to it. My husband said and did crazy things the first few years after stroke. He couldn't help it, it was the brain injury talking. I had to remind myself of this many times. He wasn't trying to be awful. He couldn't think straight. He was unclear of reality. It has gotten dramatically better (we are 12 years post-stroke) but it still happens occasionally.
I have gone on long enough. I leave you with my last tidbit:
5.When it comes to recovery, those who want it most recover best. Recovery takes work and commitment. Don't believe any time restraints--keep working on recovery. It took 4 years for my husband to move a finger on his right hand--3.99 years of work, seeing no response, then BAM! His finger moved. He opened his entire hand at 8 years but that is another story. I always say recovery is a team sport. Your dad and stepmom will need a team around them to help with exercises, encouragement, and relief. I know you will be there for them. Good luck.