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Jojo815, February 24,  2019  10:40am EST

Daily Frustration

Good morning. Last year my wife had a hemorrhagic stroke 10 days after the birth of our daughter. We also have a 3 year old son.  She was 36 years old when it happened and has left sided weakness.  It’s been a little over a year and she still cannot walk on her own, her core is weak, and her left arm is very stiff, but cognitively I would say she is 90% back.  It’s extremely tough trying to keep her motivated because of how slow her recovery is.  We’re constantly bickering because I’m trying to stay on top of her to do as much therapy as possible.  I have help with the kids, but guilt sets in because I’m asking so much of other people and drastically changing their lives also.  I have so much frustration when hearing about other families going on vacation or doing different activities on the weekends because I wonder if our family will ever get to do those things in the future with some sense of normalcy.  Nobody could possibly understand how I feel even though they are always saying, “Don’t worry, things will get better”.  I’m so grateful that my wife is still here,  but I want the old her back so badly.  Every minute I think about if that possibility will ever come true in the future and how long it will take.  I guess I’m being greedy. 

7 Replies
  • Kdogg240
    Kdogg240, February 24,  2019  11:34am EST

    Good morning jojo815, my wife also had a stroke almost 3 yrs ago now. She was 37 at the time. Our child was 14 months at the time. So I can understand your frustration. As for myself I don’t ask for much help from family or friends. I do receive a little relief on occasion, but I completely understand the guilt aspect that you feel. I know that’s what holds me back from asking for help. I read all the time “you can’t do this alone”  but sometimes I feel like doing things all by myself is just preparing me for things in the future if something were to happen and i did have to do it all alone. Probably not the best way to think, but I feel like it’s sometimes a reality. My wife has aphasia but did gain back her mobility. Our situations are a little different as your wife gained back most of her cognitive abilities, but has not gained back mobility. As for my wife her cognitive function is still a ways away from being 100%. I don’t know if she will ever be 100%  again, but I do know that I am very happy to have her here with us! Our child will know his mommy, and I’m very greatful for that. There are small things in life that I have learned not to sweat. Traveling for instance is something we don’t really do right now, but I hope will change in the future. Recovery is very slow after stroke! You are still in the very early process, as am I. But who would think being 3yrs into recovery was still an early stage of recovery. The reality is brain injury recovery is a very long process and has a tremendous amount of up’s and downs. When her neurosurgeon told us to expect it to be like a roller coaster ride, I was not prepared for this long of a ride. But I have learned patience to an extent ( not always perfect at that) and I’ve had to learn to not get to upset or mad at the little things that are not in our control. Hang in there and just know your not alone in feeling the way you do. It is normal to want things back the way they were before. But the quicker you can accept and find peace with your new life the better off you and your family will be. We as caregivers tend to think I about our future and what’s to become of it. While it’s good to think that way sometimes. It’s sometimes good to think in the present and be thankful for what we have now. The person we love is here with us and really that’s all that should matter. I wish you and you family the best. And my family and I  will be praying for you guys. Good luck! Feel free to ask me anything about my situation as I have found receiving any advice from people who are going through similar situations is a huge help. It has helped me tremendously to get through some tough times.

    Best regards Kevin 

  • AHAASAKatie
    AHAASAKatie, February 25,  2019  9:21am EST

    Good morning, I am so sorry that this is your family's reality and very glad that we are here with you. I can share our new life after stroke guide, caregiver's guide and Daily Renewal.   I think long term recoveries such as stroke, are very hard on the entire family. Please know that we are here for you. Best Katie

  • silana
    silana, February 25,  2019  10:22am EST

    I'm glad you shared your thoughts here, I know I understand as much as anyone could.  Our friend and family empathize as much as they are capable yet our situation is unique -- being a young family with one parent with a disability.  The moment my husband had a stroke (he was 49 and I was 39, our children were 5 and 9 years old) -- it was like the earth opened up and swallowed our existing lives.  You know how the doctors like to say the 'new normal', it is true.  Nothing will ever be the same, just as it is for all stages (before our children could crawl then walk and talk, etc).  But, it doesn't mean it will be awful either, just different.  The adjustment and acceptance is the hardest part for me and my husband.  His stroke was almost 3 years ago (April 4, 2016)  To give you a sense of his recovery (while I know everyone is unique)... He had a hemmoraghic stroke.  Immediately afterwards, he couldn't move any part of the left side of his body.  He had parts of his vision where he couldn't see things which were right in front him (then, you'd point it out and he'd ask if it was there the whole time).  He had trouble with basic lifestyle tasks (such as separating a container of pills into daily slots).  After 6 weeks in-patient rehab in the hospital, he walked out (slowly!) using a cane (not even a walker!).  Then, he came home; after a few months of outpatient rehab, he walked without a cane and no bars on our toilets and could safely walk the staircase in our home.  He can do all the daily tasks which he could not immediately after his stroke.  It is a brain injury which takes time to heal and reccover.  His Nuerosurgeron explained to us that large/gross motor funtioning returns first (legs, walking) and then on to smaller functioning (arms) and then fine motor (hands/fingers).  Between 6 months and 1 year, the large part of recovery is complete although the fine motor skills can still slowly improve as well as mental tasks, remembering, etc.  Oh, his speech and swallowing (eating and drinking) was very much affected and that improved after about three months and returned to pre-stroke as did his vision.  You will get through this, you are stronger than you know (you have already proven that to yourself, your wife and your children)!  I know everyone says it...make sure to care for yourself, truly!  Even if it is 10 minutes reading a book, watching tv, listening to your favorite songs -- anything where you can escape briefly from reality will bring you calm and rejuvenation!  You need it for yourself and to be able to be supportive of your father.  I understand, being the caregiver is a challenging place to be.  Don't judge improvement daily; step back and do so weekly or monthly.  By the way, I also look at other families' activities longingly, there is a certain level of grief for our 'previous life.'  We said we'd take care of each other, just didn't think it would be when we had such a young family.  We do family activities (museums, etc), my husband moves slower and we all adjust (I drop him off at the door and then I park the car, call ahead to restaurant to make sure they have tables and not bar stools, etc). Hang in there!

  • JKViggiano
    JKViggiano, February 25,  2019  12:36pm EST

    Hi Jojo815. I always say Recovery is a Team Sport.  Every sport requires scheduled practices, specific drills, and a goal.  Successful recovery takes the same discipline.  I suppose the first question is does she want to be on the team? Does she want to recover? Is she willing to work to make it happen?

    For me and my husband (11 years post stroke), we first agreed on the goals. I made the practice schedule and the therapists gave us the drills.  I scheduled our exercise time and put it on the calendar. We did not deviate from the schedule. Depending on the day, we had an hour or two to devote to therapy then we always did something fun. Luckily for us, walking was always our main source of fun and connection so post-stroke we always walked (I pushed him in the wheelchair in the beginning).  Walking had a huge effect on his recovery--happy, oxygen to the brain, increased bloodflow, strength.  

    We were wildly aggressive in our goals and we did not hit a single one BUT we recovered far more than anyone thought we would.  We became much closer as a couple. We were in agreement about what we wanted to accomplish and we were in it together.  Win win win.

    If you can't be there for all the exercises, is there someone who can join the team? Is there someone who can commit to certain days and helping with certain exercises at a certain time?  Can your little boy be involved with some of the work? LIke, can he sit on her foot when she is working on leg raises? Silly things like that?

    The great thing is that recovery is always possible--as long as you are willing to put in the work. Our brains are amazing and our bodies are resilient. Working on recovery can be slow but so what? Make it fun, include friends, family, music, anything to keep the momentum.  Good luck.

  • JimSinclair
    JimSinclair, February 26,  2019  8:05am EST

    The first requirement for any recovery is to never quit.

    Recovery comes in very small steps, very slowly; we can make very small improvements over time. Just because your wife cannot walk today does not mean that she never will. The important thing is to stay as engaged in life as possible. Everyday life can be its own rehabilitation over time. We tend to think that everything must improve right now.  While your wife may not have the interest or strength to do more therapy right now it may not stay that way if you can get her involved in everyday life to the best of her abilities.

    The focus has to be on your own family and what you can do; not in what others may do.

    If your focus is on what your wife and family used to be able to do this can only result in frustration and depression. At no time in our lives can we go back in time to what was. We need to focus on what we are capable of doing right now and make the best of what is possible.

    Do not feel guilty about relying on others. Everyone that has been part of your wife’s life is also greatly affected by her stroke. Their providing support is a way for them to deal with this very traumatic time. You must find some way to get some help for yourself to function well or you will not be of much help for your wife and two children



  • DolphinWrite
    DolphinWrite, March 1,  2019  12:41am EST

    Hey.  I hope and pray things get better.  Can I take this down a perhaps alternate though for a moment?  For me,  I won't understand what you'really going through, but I'll try.  At the same time I wa's having a heart attack, or nearly, my dad was being moved from a retirement facility to a care facility due to possible small strokes.  It"'s good you have family help.  Don't worry about trips and things.  Right now, what''s in front of you is the most important.  There''s a big learning curve, but you'll do fine.  Yes, you will get through this.  It may not be easy, but you will, and others will see your efforts.  You will also become support to others who have these experiences.  You're kids will see the effort and time you share.  This is what family is all about.  Trips and such can wait.  Right now, the love of your life and your kids are growing together.  God bless. 

  • Takeum
    Takeum, April 28,  2019  11:47pm EST
    Good to see your working hard and trying to do your best,,,,, my wife had multiple strokes on Oct2017. At first when the first stroke hit she was fine with only her right side slightly affected,,,Butnthe next days following she stroked again and lost everything,,,mThe Onky movement she had was blink for yes and shook her head for no,,,,, we spent the next 6'weeksmin the ICU just trying to keep my wife of twenty years alive.....mshe was released to a skilled nursing facility and stayed there for another 4 months before the Trec and feeding tubes were finally removed before going home,,,after 18 months of hard work daily,,,she now has 100% of h left side working and maybe 50% of her right,,,mwe are still trying to get her to start walking alone soon,,,, but she's not real good straightening the foot out quite yet and looses balance sometimes,,,,maher mind is 100%'until she tried to deal with stressful things like job,mnsurance and such, but who doesn't loose their mind with that? I am so thankful my baby is still with me and though I haven't had a day to myself in 18 months, I feel that the day she gets a break, so will I....hang n there my friend,,,life isn't over,,it's just changed and you will adjust in due time,,,you will find yourself changing in a good way after it all sets in,,, and when you get a chance to see it one day,, you'll be glad what you see,,,
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