“Call all of his family so they can say their good-bye’s. This is not survivable.”
After getting over the initial shock of my 46-year-old husband’s “not survivable” brain bleed from a new diagnosis of Moya Moya, I remember sitting alone in the Neuro ICU alone wondering “what now?”
Initially we were told Mark would not survive, but when he made it a few days, they told us he would survive, but would have life-long disability. Like most people, I was hoping someone would be able to give me a solid timeline for his stroke recovery and some answers to questions like:
- Will he walk again?
- Will he talk again?
- Is he going to know who I am? Who his children are?
- What are the chances he will ever go back to work again?
- Do you think he will ever drive?
With a little perspective being 7 years out from Mark’s hemorrhagic stroke, I now understand that all the health care team could provide me was their best guess. Here’s where the prognosis of a brain injury, traumatic or acquired, is very tricky. There are variables that can steer the outcome in many different directions:
The part of the brain that was affected
- The type of stroke, hemorrhagic or ischemic
- Brain injury that occurred from trauma or that was acquired from disease or infection
- Co-morbidities or other health issues the individual had prior to the event
- Age
- How quickly they were able to receive emergency treatment
With all of these different variables, you can see how it would be difficult for anyone, even the world’s best neurologist or neurosurgeon to be able to give you a black and white answer or even a ballpark guess as to what the future may hold.
As I’ve shared before, Mark was expected to be wheelchair bound, incontinent of bowel and bladder and unable to participate in most of his own cares because of the severity of his hemorrhagic stroke caused by Moya Moya disease.
If you are anything like me, I love when people underestimate what I am capable of, so in the back of my mind, I really thought, “HMMMMM, we will see about that!”
We buckled up and expected the worst, but prayed and worked for the best possible outcome.
Inpatient therapy
Mark was sent to an inpatient brain injury rehabilitation unit from the hospital about 4 weeks after his initial hemorrhagic stroke. He was unable to sit, stand, move his extremities, eat, talk and was minimally responsive and sleeping about 20 hours or more per day.
I felt hopeless.
With the amazing team there and either myself or family members at the bedside at all times, Mark slowly but surely made progress and we were sent home after 2 months.
Generally inpatient rehabilitation will include up to three hours a day of rehabilitation. This includes:
Physical Therapy:
Which involves increasing movement, such as walking, transferring from sitting to standing, balance and increasing muscle strength and nerve connections.
Occupational Therapy:
This type of therapy helps an individual do Activities of Daily Living, also called “ADLs”, these might include things like brushing teeth, shaving, cooking, bathing, dressing.
Speech Therapy:
For this type of therapy, the focus is not only on speaking, but also understanding language. This is also the person who will assess someone’s ability to chew and swallow safely after a stroke or brain injury.
One addition to the topic of eating, is to remind you that if you are recovering from a traumatic brain injury or stroke, the foods you choose will make a positive or negative impact on recovery and long-term outcomes. Choose wisely. I know people are often overwhelmed when it comes to nutrition. I’ve created a free eBook to help make the process easy and inexpensive without having to eliminate your favorites! You can find the download link on the home page of this website. It’s FREE and an easy read.
Outpatient therapy:
From here, Mark attended outpatient therapy at the same brain injury hospital and did so about 3 days a week. We were given homework daily and we took ZERO days off. While due to complications in Mark’s health after his first brain surgery, we had to take some time off, I squeezed every session we could get out of insurance, learned as much as I could from occupational therapy,
For those who are discharged from an inpatient unit, there are usually options for outpatient therapy. For this type of rehabilitation after a stroke or brain injury, the patient will attend these services several times per week and will continue with the therapies mentioned above.
Some of the additions you may find in an outpatient therapy setting may include:
- Music therapy: Can improve cognition and language
- Animal assisted therapy: Can enhance positive memories and emotions
- Art therapy: Enhances concentration, auditory, visual and reasoning ability
- Cognitive therapy: Can restore brain function and help with problem solving
- Counseling for both the patient and the caregiver: Very important to address relationship changes, grief and coping skills
The integration of these complementary therapies with traditional therapies help patients to improve their chances of a better outcome. The more things that you can do to increase the opportunity for the brain to repair and make new connections, the better the outcomes will be.
Working at home is something that is also vital for you or the person you are caring for to do. Don’t rely 100% on the healthcare system to do all the work needed to recover from such a devastating event.
While at inpatient and outpatient therapy, observe what they are doing to promote recovery and overall wellness. TAKE NOTES. This is an overwhelming process and you can’t be expected to remember everything.
Take the tips, exercises, resources, advice home with you and implement it into your everyday life. Yes, it’s a lot of work. However, having missed the opportunity to create health and wellness after a stroke or brain injury will also create a lot of work, so choose your hard work carefully.
For the last 7 years, Mark (who was NEVER an artist) has participated in a local art therapy group and not only does he enjoy being creative, it also gives him an opportunity to be social, included in a group and helps him to know that he still has so much to give the world.
Rehabilitation and Insurance
So now let’s talk about the unpleasant part of all of this. As a healthcare provider for more than 15 years, I will tell you that insurance runs the world of healthcare…not the other way around. It makes me have all kinds of feelings and frustrations, but that is the reality.
In my own practice, I have found that many patients and families lose hope when insurance determines the patient has hit a ‘plateau’ and that there is “nothing more that we can do.” If you get nothing else from this article, please remember this:
Insurance does not determine an individual’s recovery and outcome!
Please read that again.
If an insurance company has determined that you or someone you are caring for will not get better, that doesn’t make it true.
Had I listened to what they had said about my husband, he would still be wearing incontinence products, be living a bed to chair existence and spending all his time sleeping in front of a television
You have options. You have choices. You are not alone. There are even loads of inexpensive and free resources out there to help you. The sad thing is, no one is just going to bring them to you or tell you about them. Not because they don’t care about your recovery or well-being, but because as healthcare providers, we are not trained to look outside of the pharmaceutical/black and white/constrictive box of this current healthcare system.
You can find help and hope in so many places. We did and I still look for ways I can improve my health as a caregiver and Mark’s health as a hemorrhagic stroke, Moya Moya survivor.
Message us at:
hello@familycaregiverlanding.com
If you have specific questions I can help with! I am a real person. I read ALL the emails you send.
You can also find a quick and easy read that talks about our personal story and how we moved from a grim prognosis to a pretty spectacular life on Amazon at:
https://www.amazon.com/Managing-Caregiver-Role-Success-Strategies-ebook/dp/B09PRRJYD9
Another great resource, regardless of where you are living, is the Brain Injury Association of America (link below). They offer online webinars (great to attend while you’re passing time in the hospital), resources, education and information and may also be able to further direct you to conventional and complementary therapy sites near you.
In the meantime, know that I am here and I am cheering for you from the sidelines. I know how isolating and devastating life can feel right now. If you had an ischemic stroke, traumatic brain injury, or are caring for someone who has, don’t give up the good fight.
You got this!
