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jesstobi, August 27,  2020  5:34am EST

I feel so lost!


A nurse at the Long-term Acute Care Facility where my mom is in encouraged me to find a support group so here I am.  My 62yr old mother suffered a right side hemorrhagic stroke on 5/31/2020.   I live in Texas and she lives in Wisconsin.  I flew immediately the next day to see her.  Doctor advised me she had gone in with a ruptured aneurysm and they had clipped it successfully.  He mentioned how she would be in the NICU for 14 days just to monitor her and then possibly go home. When I saw her that day, besides the IV, was a small patch of shaved hair and a drain coming from her head.  The next day, she was having a conversation with me, eating and drinking properly, but I noticed she kept leaning her head to the right side.  I would fix her pillow and head and within minutes she was leaning to the right again.  Then she said she felt very tired and I thought it was normal.  After visiting hours, I came back to her apartment and received a call from the doctor saying they were going to perform an emergency craniectomy because her brain was swelling.  By next visit, my mom had most of her head shaved, staples and a feeding tube through her nose.  She was asleep most of the time after this.  A week later, she started getting Vasospasms.  This had the doctor more worried than the initial stroke.  Upon researching vasospasms, I knew why the doctor was concerned.  It is one of the main causes of death after surviving a stroke.  They kept monitoring the vasospasms closely, but they were very persistent.  Around 5 days later, she had tracheostomy and as well as a PEG (feeding tube in stomach).  Then, 6 days later, her right lung had collapsed and a chest tube had to be briefly inserted.  Fast forward 45 days, she was transferred to a Long-term Acute Care Facility to help her wean off the trach and help her with the left side that is paralyzed.  As of today, she is still at this facility and the trach has been removed.  Due to her alertness level, she still has her feeding tube because they feel she will have diffuculty chewing and swallowing.  They do minimal physical and occupational therapy two times a week. Its been almost 3 months and she is still very weak.  She is able to answer my questions, but sometimes the things she says don't make sense.  Today was the first time that I became truly worried because she was speaking about having to go to work on the weekend and eating toast for breakfast.  Neither of those things are accurate.  The city she resides in (temporarily relocated to be here with her.) has a lot of 'Resident Doctors' and I feel they take everything lightly.  I am very thankful for them and all the nurses, but anything that I ask its always the same response, "only time will tell"  or "it's normal."  I get more straight answers from Google than  I do from them.  Last Thursday, she had a follow up appointment with her Neurosurgeon and again a "Resident Doctor" is the one who saw her.  She said her CT-scan looked good.  No new bleeding and no sign of infections, but that she was going to hold off on the conversation of putting back her skull flap.  That in 3 months we can talk about that and that the main issue right now is to get her more alert. Her next step is to be transferred to a Skilled Nursing Facility which to be quiet honest, I could probably do what they do, here in the comfort of her apartment. I am so thankful that despite COVID-19, I still get to visit her 4 hours a day eveyday. I am really trying to stay positive, but DOES THIS EVER GET EASIER??


5 Replies
  • JKViggiano
    JKViggiano, August 27,  2020  2:24pm EST

    Hi Jesstobi. I feel your pain. My husband's stroke was 12 years ago but I still clearly remember the vague, non-answers of the medical community. The standard answer to every question was "every stroke is different." While that answer is true, it was frustrating and maddening. My husband also got progressively worse for weeks post stroke. I kept trying to raise the flag of concern but no one at the hospital or rehab seemed to be concerned with me. I felt very alone in my fight for his life, health, and recovery.

    The good news is that he survived, and with years of consistent work, he has recovered far more than anyone thought possible. Since everything was so vague, we decided to take it as "anything is possible." Back then, we were told he had 1-2 years to recover. Since no one seemed to be sure of anything, we decided they didn't know about recovery either. We were right. As long as we were willing to work, he was able to improve. For example, it took 4 years to move his thumb. 4 years after that, he was able to open his whole hand. About 10 years post-stroke, he was able to (slowly) open his hand twice so he could (slowly) shake hands. 

    He was quite disconnected from reality for a couple years post-stroke. That was scary. It took time but the brain fog eventually lifted. He started to remember things and interact more normally. In some ways, not understanding reality was a blessing for him--he had no idea how bad off he was. He happily worked on recovery and had no doubt he would fully recover and get back to work in no time. The positive attitude was essential to facing the exercises 5 days a week.

    To answer your question, yes it gets easier but not right away. The monotony of rehab and the sense of loss can be oppressive. We began rewarding ourselves with something fun and normal every day after exercises. It kept us going. I prayed a lot. We added music to the exercises and tried to make them fun. I hope you and your mom can find a way to bring joy into the routine and that you start to see improvement quickly. It is hard and slow but incredible to see what a brain can do. Good luck.

  • jesstobi
    jesstobi, August 28,  2020  12:40am EST

    Thank you Katie!  I will definitely look into this links.  And thank you JKViggiano, for sharing your husbands story with me.  This really made my day and gave me the hope that I've been looking for.  

    I really appreciate the support!

  • AHAASAKatie
    AHAASAKatie, September 4,  2020  8:42am EST

    Just checking in to see how you are doing? Thanks Katie

  • jesstobi
    jesstobi, September 5,  2020  2:29am EST

    Hi Katie, thank you for checking up on me!

    Today wasn't a good day.  My mom got transferred to a skilled nursing facility and due to Covid they are not allowing visitors. I had just logged on to post about this.

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