WhatNow
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WhatNow, September 13,  2020  11:05am EST

My mom had a stroke and I'm lost

My mom is 56 and just had an ischemic stroke. 3/4 of the arteries that feed her brain are chronically occluded and she has "significant damage" to her left frontal lobe. We're 3 weeks from the stroke and she just started rehab. No speech and no executive function (she will follow commands like "Let's walk to the toilet" but won't walk to the toilet if she needs to go to the bathroom). She is starting to swallow, and the neurologist was very iffy about whether or not she'd be able to eat by mouth again, so that's a positive. Her blood pressure has to be maintained at an elevated level for blood to continue to perfuse her brain - if it drops, she'll have another stroke. 

I guess I'd just like to hear from anyone who has a family member or has experienced ischemic stroke themselves; can part of that executive function return? Will she ever be able to be left alone again? Have any of you ever experienced this level of damage and come back from it? 2 weeks ago we were talking end-of-life measures for her and now she's in rehab, so I know I should be grateful....I just know my mom. She's so independent and she would absolutely HATE being this dependent on other people. We chose to have a feeding tube inserted (PEG) to give her a fighting chance and God help me, some days I wonder if we should've just refused it and let her go the palliative route. I could really use some advice from more experienced people. 

 

4 Replies
  • AHAASAKatie
    AHAASAKatie, September 14,  2020  8:52am EST

    Good morning, I am so very sorry that this happened to your mom and your entire family. I know we have a few stroke caregivers and survivors that will be able to share their thoughts with you. I think talking with someone from our Stroke Family Warmline would also be of great benefit for you. The Stroke Family Warmline connects stroke survivors and their families with an American Stroke Association team member who can provide support, helpful information or just a listening ear. Our trained specialists in the ASA’s National Engagement Center can answer your questions about stroke. Call us 8 a.m.-5 p.m. CT Monday-Friday at 1-888-4-STROKE (1-888-478-7653).

    Please know that your family is not alone in this. We are here to support you, either on the Support Network or via phone. 

    Best Katie

  • JKViggiano
    JKViggiano, September 14,  2020  12:24pm EST

    My husband survived a massive stroke on his 51st birthday. He lost his right side, his memory, his ability to speak, and his ability to organize his thoughts. He was completely disconnected from reality for a couple years. He could do nothing for himself or by himself. We are 12 years out now but I still feel your pain. 

    I am encouraged when you say she is independent. Our saving grace was my husband's stubborn refusal to be disabled. We worked ******* recovery. At the time, the medical community still said we only had a year or 2 to recover. Thank the good Lord we had a neurosurgeon who told us "those who want it most, recover best." We threw off any limitations and decided we wanted reocovery most. Our goal was full recovery.

    I always say Recovery is a Team Sport. I was coach and my husband was the athlete. I scheduled everything--therapy time, fun time, outdoor time--everything we did was geared toward some kind of stimulation. I had cheerleaders to help me keep going and therapists to teach us exercises and activities that would help.

    We set lots of goals. We set really high and agressive goals. We didn't hit any of them but it didn't matter. We had something to measure improvement AND we recovered more than anyone thought possible. Those first few years were tough but we kept building. We kept a 5-days-a-week exercise calendar for 8 years. Nothing came back on its own, we had to earn every improvement.

    He now walks, mostly talks, and lives a quality life. Organizing his thoughts is still difficult but we laugh and work together to help him express himself. Our brains are amazing. Your mother's independence may be her saving grace. If she is willing to work on recovery, recovery is possible. You are early in the process. My husband didn't know me or our kids in those early months. Keep working with her, keep encouraging her. Good luck.

  • Sendrovitz
    Sendrovitz, September 14,  2020  12:44pm EST

    I had an ischemic stroke about five years ago.  I hope your mom recovers.  If your able to get there, New York Presbyterian Hospital has an excellent inpatient rehabilitation unit.  It's known as Baker 18.  I strongly rcommend it.. They are located in Manhattan at York Avenue and East 68th street.

  • JimSinclair
    JimSinclair, September 15,  2020  6:23am EST

    Unfortunately, everything is iffy, which is like the glass half full analogy. We are better when we see the glass as being half full rather than half empty, even when it is very difficult to see the difference. You are correct in that YOU know your Mom. I do not have a relative who had a similar stroke.17 years ago, at age 57 I experienced massive bilateral strokes following emergency hip replacement surgery following which I lost use of my entire left side/ I could not swallow or speak, was incredibly confused, and sat slumped over in a wheel chair frightened that was what to be my life for the rest of my days. Although I was only semiconscious for the first 24 hours I do have a slight recollection of my doctor telling my family gathered at my bedside because the doctor’s thought I was going to die that even if I survived I may never walk or talk again; to which my daughter retorted “but, you don’t know my dad.

    Every stroke and every journey of recovery is unique to each of us and good things (including miracles) can happen. While I hated the idea of being dependent on others during my three months in hospital I eventually realized that a journey of recovery occurs with small steps slowly and copious amounts of support and assistance from others

     

     

     

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