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My wife at 24 whom I had married a few weeks before at the time experienced a ruptured aneurysm at a grade 5 Hunt and Hess grading system which eventually lead to multiple strokes. She was in the hospital for 4 months before spending another 5 months at a rehabilitation center. I was with her the whole time while I wasn't working, trained to take care of her, and etc. I don't know if she'll continue to progress because she continues to have set backs that don't seem to allow her to leap any further. An example could be that she get's so close to being able to stand for a good minute that they believe she could eventually walk but when she get's so close something causes her to experience hemiparesis which puts her in bed for a solid week while the doctors work on understanding what needs to be done which has required the shunt to be adjusted numerous times. It's not the ability to walk that concerns me but it's just an example of the progress she's made and has lost.

 

Considering the hemorrhage she had experienced it's incredible the leaps she has made although it has taken quite a long time but we're all blessed. However, the set backs are certainly discouraging and I'm primarily concerned if she'll make further leaps in the expressive language area which would mean the most to me. Right now, she's able to tell you if she's cold or wants something but that alone probably took 7 months. I feel her intelligence is actually there but unable to call those expressive languages and I just have to wonder how much further will she get and unfortunately, we have yet to actually begin our marriage. I also feel that I've reached the most I can offer as a caregiver. She's my everything and I do feel at times that I need to move on but continue to be her best friend and offer to help in any way that I mentally can. 

 

The reason for my post is just to see if there is anyone else that has experienced this level of acquired brain injury and I would like to hear on how their doing because all I've been told are miracle stories and although she's been a miracle... I'm human and just want to see her progress so much more. 

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The life of a caregiver/supporter to a stroke survivor with a lot of issues is tough.  Willingness alone cannot keep pace with it, so you do have to be very determined as well if you want to be there for her.  You had such a short married life but nevertheless you are a couple and that counts for a lot.  She will draw on your strength and you will be there to support her as much as you can.  I found with my husband Ray that my sole focus needed to be him as other distractions weakened my resolve to be right there for him every step of the way.  His hospital/live in rehab for the major strokes in 1999 was four and a half months and I looked after him for 13 years so I do have an experience of long haul caring. Looking back over the years with the seven strokes, numerous falls, broken bones etc it seemed a hard existence but in between, in those times when he was well we did have a good life and he and I got to enjoy those extra years together.

 

I guess a lot of what you are feeling is frustration, no progress, slow progress, one step forward and thee steps back is a really trying time, for her and for you.  Gather family and friends together as much as you can because you both need their support too.  You will always be her Number One Supporter which I hope you can be for as long as it takes but many others can also contribute to her well being so call in all the favours and surround her with love. Encourage her women friends to bring flowers, massage oils and beauty products and see if that brings positive results. If speech is difficult see if she can hum or sing as singing is in a different part of the brain to speech.  Even if she can make a few notes happen it will be a break through and an encouragement to you both.  Hang in there..

 

Sue.

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On 10/28/2017 at 8:51 PM, Linnie said:

Hi again, your situation is still on my mind.  I should have asked if your wife's speech problems are because of language loss (which was my deficit) or difficulties with muscles in face, mouth, throat which are needed for speech.  

 

As I said previously, recovery time varies.  She may make a lot of progress before the first year anniversary of the stroke, or it may take several years.  Unfortunately, it can't be forecast.

 

Please keep hope and encouragement in your heart.  I know that the strokes are not only a life-altering experience for her, but for you as well.  I can tell you though that I got through it and thoroughly enjoy life. 

 

It would be great if you keep in touch to let us know how she's progressing.  All the best,

During her vasospasms (14 day journey), she experienced a stroke in her frontal lobe and another stroke on the right side of the hemisphere of the brain. When the pressure was escalating too high they also had to perform a hemicraniectomy to relieve pressure on that side. Unfortunately, they lost her for 10 seconds which was enough to deprive her brain from oxygen which caused the thalamus to experience stroke. 

 

Thank you Linnie, I was told to expect the worst but she has proved the best against the cards she had dealt. Language lost is currently her largest deficit and it has been a full year now, granted, she has had many set backs while being so close to leaping further. 

 

 

15 hours ago, HostSue said:

The life of a caregiver/supporter to a stroke survivor with a lot of issues is tough.  Willingness alone cannot keep pace with it, so you do have to be very determined as well if you want to be there for her.  You had such a short married life but nevertheless you are a couple and that counts for a lot.  She will draw on your strength and you will be there to support her as much as you can.  I found with my husband Ray that my sole focus needed to be him as other distractions weakened my resolve to be right there for him every step of the way.  His hospital/live in rehab for the major strokes in 1999 was four and a half months and I looked after him for 13 years so I do have an experience of long haul caring. Looking back over the years with the seven strokes, numerous falls, broken bones etc it seemed a hard existence but in between, in those times when he was well we did have a good life and he and I got to enjoy those extra years together.

 

I guess a lot of what you are feeling is frustration, no progress, slow progress, one step forward and thee steps back is a really trying time, for her and for you.  Gather family and friends together as much as you can because you both need their support too.  You will always be her Number One Supporter which I hope you can be for as long as it takes but many others can also contribute to her well being so call in all the favours and surround her with love. Encourage her women friends to bring flowers, massage oils and beauty products and see if that brings positive results. If speech is difficult see if she can hum or sing as singing is in a different part of the brain to speech.  Even if she can make a few notes happen it will be a break through and an encouragement to you both.  Hang in there..

 

Sue.

Thanks Sue, you're absolutely right on what I am feeling. You are also right that she can sing! There were times listening to her where I cried because it was the longest I've heard her speak. It's really amazing and I hope to see her in a choir some day as she get's stronger and better. I read there was a stroke choir in Australia but I have not looked to see if any are in the states. I was thinking through church she could participate as she gets better though. 

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hi husband :

 

I am sorry that your wife suffered stroke at such a young age & you all are going through difficult time right now. Stroke affects whole family. but having supportive family & spouse makes huge difference in survivor's mindset. I know it did for me. Being young & survivor also helps, you can rebuild your life again & it will be as satisfying as prestroke days. All strokes are different & so is recovery & when you are in midst of it, it feels as if nothing going to good again, or change again, but trust me things do change. nothing lasts forever good times or bad times.

 

I stroked at age 34 which retired me from the job I loved & left me paralyzed on my left side. I never thought I would find joy in living again. but after 13+ years on this post stroke journey my life is  richer & marriage is much more stronger than before. lot of relationship falls apart in difficult situation since giving up & running away is so easy & we can all justify our reasoning. but just thinking what she would have done if roles were reversed.

 

Asha

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John,

 

 Everyone here has given such wonderful words of encouragement.  Firstly, I'm very sorry your wife and you are going through such a hard turn of events. She is one lucky gal to have you there all the time. Don't forget you also need to allow yourself to rest. 

On ‎10‎/‎27‎/‎2017 at 12:26 AM, Husband said:

 

 I also feel that I've reached the most I can offer as a caregiver. She's my everything and I do feel at times that I need to move on but continue to be her best friend and offer to help in any way that I mentally can. 

This feeling is a very common one. I understand that this isn't what you signed up for but neither did she. Stroke recovery isn't something that you can put a time frame on. She sounds a lot like I was after my stroke. When I was right there to walk, I wanted to but my body and brain wasn't ready. And Fatigue is EXTREMELY common after stroke. I still get tired after taking a shower. The biggest thing to know is right now...at this moment.. looks like the absolute worst.. Everyday she is trying her hardest to get better. Loved ones often think that recovery will be easy because she already knew how to do things.. well her brain and body aren't on the same page yet. Trust me she HATES how she is but she really is trying hard and some of which can't be seen for her brain needs to figure out new ways of doing things. The most important thing is to know she loves you and feels sorry she is the way she is.. I know for I felt that way towards my husband

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Thank you all for your advise and comfort.

 

Linnie, 

Thanks for the article you sent me and the suggestion of offering patience while she's practicing her speech. I can certainly see why if I spoke for her while she's attempting to speak that it could possibly lead to discouragement. The article was very helpful in identifying several things I had not thought much about. 

 

 

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