My experience
As I sat in the neuro ICU, in utter shock and disbelief, after my husband suffered a “not survivable” brain bleed I was completely terrified. We had only been married 18 months. He was an athlete, in great health, with no significant health history…that we knew of.
There was one neurosurgeon who was most certainly on Mark’s side. He felt that there WAS actually hope for survival and good quality of life. I had been a hospice RN for 10 years and was a new nurse practitioner and I thought this physician was really full of false hope.
One thing that still stays in my mind though, all these years later, is when he told me, “Aimee, recovery from something like this is a marathon, not a sprint.” With all the ups and downs, new diagnoses, opinions from every different kind of specialist, and complications along the way, I have kept those words at the forefront of my mind.
When there are no solid answers
Put in a position where our entire lives are turned upside down by brain injury or stroke, we are constantly going to be seeking some reassurance, some kind of timeline, a prognosis.
Questions I asked and often hear others asking:
- Will he ever be the same?
- Will she be able to return to work?
- Can I ever drive again?
- How am I supposed to take care of her at home?
- What do I tell his employer?
After all, it’s not like the world stops turning because you or a loved one had a hemorrhagic stroke! I didn’t personally have the option of calling the electric company and telling them I wasn’t going to be able to cover my bill because Mark just had a massive brain bleed out of nowhere!
The things you are feeling and thinking are normal for anyone on the receiving end of a stroke or brain injury. We are supposed to figure out how to move on with life and we don’t even have a solid answer of what life will look like moving forward.
Factors that will impact outcomes and recovery time after a stroke or brain injury
The reason it is often difficult for a provider to tell anyone a definite answer about how well or how soon someone will recover from a stroke or brain injury is because we are all very different. This means things like overall health, age, how quickly we receive treatment, and other health issues, will all play a key part in the time it takes to recover and how much recovery is possible.
While some things may be out of our control, like age, family genetics, or how quickly we receive treatment, we also have many things within our control that we can do to improve our odds of a faster and more full recovery.
You just never know
One thing I always like to share is that Mark was not supposed to even survive. Multiple physicians in those early morning hours explained to me, that this severe subarachnoid hemorrhage is NOT SURVIVABLE.
I was urged to call his family and get them to the hospital as soon as possible so they would be able to say goodbye to him.
When he did survive and we were moved to another hospital for specific brain injury/post-stroke rehabilitation, they very bluntly explained the very best they could hope for was he would be able to pivot, with help, to a wheelchair.
When I brought Mark home 3 months later, he was walking, but not independently, he was incontinent, he was unable to be left alone, he was falling, and he had difficulty eating and speaking.
That improved over the next 2 years. Sitting in the position we are 7 years later, I assure you that while insurance had felt that Mark had improved as much as he could and that they were no longer going to pay for therapy, doing our own “therapy” has gotten us to this place, which is so much better than ever predicted.
First hours, days, weeks
So in this first part of the recovery process, there will be a lot of information being thrown at you at a pretty rapid rate. At this point, the medical team will try to maintain stability in the patient’s health and assess what damage has been done and where.
From there, you may find that different specialists have different opinions about what should be done when it should be done, and what the benefits and the risks are. As frustrating as this can be, keep in mind that just like “regular people”, doctors and providers all come with their own experiences, priorities, and emotions.
Try not to make any long-term plans at this point. For yourself or if you are caring for someone with a brain injury or post-stroke. It is far too early to know most anything for sure. Trying to make any kind of plans at this point will likely just result in more frustration when you have to change them again because originally diagnoses and prognoses have changed or shifted.
Some days will be full of hope, some days you will want to scream
After you have overcome the initial shock of the event and have found yourself, or the person you are caring for, in the full swing of rehabilitation, be patient. Someday amazing progress will be made. Some days there may be steps backward. This is all normal!
Whether it was an auto accident that caused a traumatic brain injury or TBI or an ischemic stroke that has led to right-sided weakness, there will be progress but there may also be some goals that are not able to be reached.
DO NOT GIVE UP!
This is normal and can be caused by a number of things. For example, if your spouse had a massive stroke and was walking 20 feet with a walker yesterday and today they keep falling asleep, don’t panic.
Step back and look at the bigger picture:
- Did they overdo it the day before?
- Have they been through recent diagnostic testing that caused them fatigue?
- Did they sleep poorly the night before?
- Have they missed a special event and now they are feeling sad or depressed?
Hopefully, you are able to see my point. We all have things that can contribute to a day where we are feeling great and motivated or a day where we just want to stay in bed.
Try not to look at 1 day, 1 hour, or 1 therapy session. Rather, look at the overall picture and progress and know that tomorrow will likely be better.
Insurance companies run healthcare most of the time
As unpleasant as this is to admit, it is the truth. For the most part, physicians, nurses, and therapists, all have to bow to the limitations of what insurance is willing to approve and pay for. Regardless of the type of insurance you have, they will limit physical, occupational, and speech therapy.
This can be VERY disheartening if you still feel like progress can be made.
You always have the option to appeal the insurance company’s decision. If you are not sure how to begin that process, call the 800 number on the back of the insurance card and ask for a customer advocate.
You can always enlist the social worker at the hospital or rehabilitation center and ask for some guidance from them. Keep in mind, like most healthcare staff, they are generally overloaded with work. So while they may not be able to do this for you or with you, they generally know how to navigate the system.
Here is a link with more information about appealing your insurance company’s decision:
https://www.healthcare.gov/appeal-insurance-company-decision/appeals/
If you find that your insurance company has determined that you have “maxed out” all your allowable therapy sessions or has decided that you have reached a plateau and don’t anticipate any improvement, read o
This happens to almost everyone. It’s frustrating, but remember it’s not personal. Don’t waste your energy being angry about it and throwing up your hands and determining that you are now never going to have the opportunity to get better.
Brain Injury Recovery Takes Time
Here are the most recent numbers:
- 10% of stroke patients have a full recovery
- 25% have a minor long-term impairment, but adapt and live independently
- 40% have major long-term disabilities that may require them to receive some help with activities of daily living
Evidence shows that when studies are done after a stroke or brain injury 5-10 years after the event, many patients do continue to have improvements in both their cognitive health, including memory and mood, and in their physical health, including strength and endurance.
In my own experience, I remember a neurologist telling me that at the 1-year mark, we would see as much improvement as we would ever see after a subarachnoid hemorrhage as severe as Mark had.
I’d like to take Mark back to that same neurologist so that he could see he underestimated my husband! Mark has come so far in 7 years.
He will never be the same person and does struggle with many disabilities, however, he is doing so much better than anyone ever anticipated and his physicians continue to be impressed with how far he has come.
You are not at the mercy of the healthcare system, insurance, or a provider’s prognosis
I would not believe that last point either if I had not lived it myself. Often it can be difficult for us to see how far we have come when we are in the middle of things, but trust me, I have seen what a little education and elbow grease can do to recover from a stroke or brain injury.
Here are some things that helped me adjust our lives and that have led to Mark’s progress:
- Healthy diet
- Rest
- Daily exercise/movement
- Working on things that require brain power
- Increasing social situations where is no overwhelmed
- Staying in gratitude (even when I don’t feel like it)
- Keeping a routine
While I understand these all may sound like good advice for anyone, which by the way is true, this is especially true for those who have experienced a brain injury or stroke. It is important to keep working towards recovery and health.
The numbers I shared previously, about recovery after a stroke have a flip side. Those who have had a stroke or brain injury have an increased risk of developing dementia. That is the hard truth.
While making lifestyle changes to improve health is no guarantee that you or someone you are caring for will not develop dementia, wouldn’t you want to do all you could to try to improve your chances of avoiding this devastating diagnosis?
Lifestyle changes don’t have to be hard! Start small, with maybe additions to healthy food to your daily meals or snacks. It doesn’t mean you have to give up all your favorites, but simply adding some things into your diet can help fuel your brain and body to aid in healing.
Honest! I’m not making it up. Check out this article:
https://www.livestrong.com/article/13727423-gratitude-benefits/
Making sure you are focused on gratitude can also do wonders for your physical and emotional health, which can be a challenge when you are in the midst of a health crisis or find yourself suddenly becoming a caregiver.
For that reason there are 2 free downloadable eBooks on my website:
https://familycaregiverlanding.com/education/
Yes. They are free! Just follow the link and download it to your phone or tablet or computer. They are quick and easy reads and you can skim through them while waiting in a doctor’s office or while you drink your morning coffee.
Remember, you may not have control over everything, but you do have control over how you chose to react to situations. Stay focused. Reach out for help if needed. I know you can do this!
