Brain Aneurysm Support Community

The struggles and questions of a survivor's wife

  • Harlylena, I so appreciate your analogy of the tree and strength. I'm in great need of encouragement tonight. I'm the survivors wife. I'm so tired and weary, missing our past life before this nightmare shook the very core of our lives. My husband is the sweetest man and it's so hard to see how he struggles. I have to be the strong one and I care for him and our farm while taking him to therapy twice a week which is an hour and half drive one way. I also work. It's been 10 months since his rupture and we are so blessed to have survived it. I'm thankful to God everyday for his help and that we're home after 65 days in hospitals (open heart/2 valves replaced just 2 weeks before the rupture. I just have so many questions, like is it possible for him to ever drive again with peripheral vision loss (mainly on the right side). Will the throwing up ever end, he's having to relearn how to read all over again too. He has aphasia without agraphia (can't read, but can spell and write words) weird huh. Does anyone else deal with throwing up? I know that we have so much to be thankful for but sometimes I feel so lonely and have anxiety attacks...hard to forget everything I've seen through this. We are adjusting on long-term disability and SSD, he still thinks he may be able to return to work...35 years as an electrician at a power plant. Hope I haven't rambled on to much. I just need to know I'm not alone and I want to remain positive and believe that he can recover with little deficits. My faith gets me though day to day. Any advice is greatly appreciated. Thanks for letting me vent.
Permalink Reply by patioplans 15 hours ago
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I'm so glad to see that you put this on the Discussion Board as well. There are so many wise words around here and I wanted to make sure you received as much information as possible. Like I said, look for Edwardo. He's an angel in disguise just like you are for your husband. Hugs!


Thanks harlylena! I do draw strength from others on here. I'm thankful for all the advice and input that I can get. It's been a life-changer, one day at a time is my motto! Thanks and hugs! God is good even when it's hard :)


harlylena said:

I'm so glad to see that you put this on the Discussion Board as well. There are so many wise words around here and I wanted to make sure you received as much information as possible. Like I said, look for Edwardo. He's an angel in disguise just like you are for your husband. Hugs!

Bravo Edwardo! I think you just motivated me too. Still alive...words I needed to hear before going for my brain scan results tomorrow. Thank you!

Edwardo...you are remarkable...and +++..as you are a father, too...

Edwardo,

You explained my journey to a tee! Yes, things aren't what they were and probably never will be quite the same.But, I have him home, he can walk, talk, share, laugh...he's alive~ people ask me where I get my strength and honestly I don't think about it much. God! I married this man 33 years ago and I love him with all my heart. I'd like to think if it was me instead of him that he would care for me with love, patience and the same commitment. This life is a journey and I have hope that we can walk it out together. I remind myself alot....God writes our story, and He will give us the strength to walk it out. Thanks so much for posting your points. They are all so note-worthy! Still alive...amazing!

Edwardo said:

Me ....A black sheep at best but definitively not an angel .... survivors wife , I wish I could say something to make it easier... truth is .... Im still in the thick of it here . I dont know how it gets better but I do understand how to not make it worse in my own thoughts. I have a corny checklist that I work through. use to remind myself how fortunate I am at this point in life ....

  1. We made it through the sah....against the odds.....still alive
  2. We got through the therapy , back home .... still alive
  3. We can talk, understand each other and share a laugh and a smile... still alive
  4. Old memories are still there , bad recent ones are not, she missed all the scary stuff .....Awesome... still alive
  5. since this started to now ... improvements have happened ....progress made.... still alive
  6. Old life changed , new life continues .... different, more work but magnitudes better having her with me......Still Alive
  7. I have been given the opportunity that few ever get..... The chance to live and do what I pledged to my partner years ago ..... Its a worthy thing and not easy but well worth doing ....still alive .
  8. Some people go to great lengths and expense for a chance to do something extraordinary for one bright point in their life...... Climb mt Everest , Sail around the world alone , Serve the poorest of the poor in a far land , pull someone from a burning wreck ........ For me... and maybe you as well, Now is our time to stand tall and climb that mountain , serve the poor in a far land , Search the horizon as we sail confidently across an empty sea , Run into the fire to save another .... If there is life there is hope, The Journey is life .....and the doing of the thing is honorable and an example that people look at with wonder....... how do they do it , ....... still alive ...
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Survivor’s Wife, you rock! I feel pretty sure that your love for your husband is a big reason he continues to fight. Without our partners, our friends, recovery would be very hard indeed. For me, people like you, Eduardo and others are a Gift to us. You and the other caregivers fight this recovery battle with us. It is heartbreaking and rejoicing all at the same time. Remember to do somethings for yourself.

When I was in ICU, my friends brought in a book. I had to ask the nurses for definitions of the most simplistic words. I don’t read as fast as I once did, but I still read. One f the secretaries shared her daughter’s college paper on and it took me hours to help. This is when I learned I could write the words but not necessarily have them verbally. Now I try to use things like word of the day, a dictionary, and sometimes when I read on my smart device, I can look a word up. I may not always remember the word but I know it’s there somewhere. And like your husband I can write and type much better - like nothing’s wrong.

I had a “pop” sound somewhere around the 18th month post rupture and finally heard the thoughts in my head. It was very weird to be able to write without the thought in my head first. I still can’t visualize, though that pop had given me a picture of a horse’s front leg. I think that pop was my artery completing the rerouting, but medically I don’t really know. I have two more visualizations after the two year mark, our old lab wagging her tail and looking at me for the last time, and a dog that was shot in the head and survived coming to see me when we were both at the vet’s. Meaningful images, those last two, got no clue where my brain was for the horse’s leg.

It also took me awhile to accept I won’t work in my field anymore. One thing that made it apparent was trying to figure out a plumbing issue - it took three days for me to realize the plumber had cut the pipe a bit too short. If I couldn’t figure out a simple plumbing issue, how could I help families problem solve their issues? And I have learned that people having verbal conflict effects my aphasia.

I don’t know about the throwing up. I was told that if having headaches, throwing up and/or neck stiffness, I needed to go to the ER. I have also been told to just go to the ER at WFBH and not my local ER because the local doesn’t have the technology that the hospital has that did my coiling. One of the local ER doc’s had said I was drug seeking, partner called triage nurse and off we went to WFBH, and I was having vasospastic headaches. Benedryl, phenegren?, and something else helped to take care of it as well as the second coiling. They found another aneurysm had developed behind the original multi lobed rupture. So I would recommend calling the surgeon who did the procedure for your husband’s rupture.

I don’t want to jump in ur conversation but I so feel how you are feeling about missing the past. I am trying to keep my faith and I cry everyday. Our relationship is so hard and it use to be the simplest loving thing but my brain has changed all that. It will be nice to talk and help each other get through these difficult times times.

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Shorty,

Thanks so much for your reply! It's so good to hear from others that are struggling. Yes, it's so hard and tears fall so often...like now reading your post. I can say one thing, tomorrow is a new day and we'll get through this. It's not going to be easy, it may not be as quick as we want, but we will get through this with God. If I look back and see what our lives were like 6 months ago I can see that he's improved. We may never have the life we had but we have life and we need to celebrate each day. That's not always easy, especially when it's not a good day and I feel so alone. Praying for you friend.

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Survivor's Wife,

You are the reason we push on. Your dedication is that of an angel. We look into your eyes and see hope and love.

Thank you

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Al,
Thanks you so much for your kindness. I’m not an angel…just a woman that God strengthens to do this crazy thing called life. I wish many times “why couldn’t we just have had a normal life” without this new normal. I guess He wants us to trust in Him & not ourselves.

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Survivors wife,
Hi, my husband had a heart attack and a stroke on 6/7/16, and a CT scan showed a 7.4 mm aneurysm. We were In the hospital 11 days and then transported to a rehabilitation hospital for 4 more days. As a result of the stroke my husband suffered from asphasia and apraxia, as his stroke affected speech,understanding and emotions. It caught my attention that you said your husband struggled with reading and writing . Has his symptoms improved?

G and K,

So sorry to hear about your husband. I understand what you're going through. My husband has improved a lot since the annie and heart surgery, but still has trouble finding words. It's kinda weird, but it's like I know what he's thinking before he says it. It makes it easy to help him when he's trying to find the word he is wanting to say. He was in speech therapy twice a week for a year. 90 sessions! It was 80 miles one way. It really helped and I sometimes wish he was still going. He worked harder to regain his reading but now he doesn't want to do "homework". It's still very difficult for him to read. Just hang in there, be patient. It will get better with time and work. My husband was very emotional when we came home...after 65 days. I think putting him on an anti-depressant helped a lot. Praying for you and him!

G and K said:

Survivors wife,
Hi, my husband had a heart attack and a stroke on 6/7/16, and a CT scan showed a 7.4 mm aneurysm. We were In the hospital 11 days and then transported to a rehabilitation hospital for 4 more days. As a result of the stroke my husband suffered from asphasia and apraxia, as his stroke affected speech,understanding and emotions. It caught my attention that you said your husband struggled with reading and writing . Has his symptoms improved?

It WILL get better. I’m 10 months out from MY ruptured one, and coiling of a 2nd one that was discovered upon the ruptured one. I pray his vision and reading will be restored. As for the fatigue? Mine has diminished a LITTLE, but sometimes I just have to push through it. About work…I’ve been a hairdresser for 25yrs. I WAS able to get back to work (I didn’t have sight or cognitive impairments) maybe a little too soon ; but didn’t return to my FULL schedule for a little over 6 months. Prayers (of MANY! )and determination are paying off.

Elizabeth


Elizabeth,

It's so encouraging to hear how well you are doing. Amazing! My husband is doing pretty good. He will probably never return to work but I think he's coming to terms with it. His job required a lot of reading prints and memory. He has gone through driving rehab and has been cleared to drive again. That's been huge, giving him a little sense of independence. He doesn't drive in high traffic or to the city but he's able to go to the store and check on his cows and nearby places. He still has days where he just can't stay awake. He recently fell off a ladder and broke his arm. Very scary...my first day back to work so I wasn't home. Being on blood thinners makes everything much more dangerous. He still suffers from vertigo when he looks up or down. It is better though in which I'm so thankful. Things are not the way they were, but life is still good. I thank God for all He's brought us through. Lot's of prayers were prayed for us and I continue to trust God to help us. Press on, pray on...Kim
Elizabeth said:

It WILL get better. I'm 10 months out from MY ruptured one, and coiling of a 2nd one that was discovered upon the ruptured one. I pray his vision and reading will be restored. As for the fatigue? Mine has diminished a LITTLE, but sometimes I just have to push through it. About work....I've been a hairdresser for 25yrs. I WAS able to get back to work (I didn't have sight or cognitive impairments) maybe a little too soon ; but didn't return to my FULL schedule for a little over 6 months. Prayers (of MANY! )and determination are paying off.

Elizabeth

Survivor’s Wife,

I think your DH should not be climbing ladders anymore. A fall where he hits his head could be deadly on blood thinners. We had a friend die that way. There was no way the doctors could stop the bleeding. The intracranial pressure just kept getting worse. He slipped on a stair in their home. Add vertigo to that and it’s a recipe for disaster.

Laurie

Survivors Wife...cherish Laurie for her response... I could do so much more...and, am too tired...I could trip on some words/thoughts...

Hi Survivor’s Wife, what great news about your husband’s recovery. Congratulations on his ability to drive and I am sorry about his broken arm. Hang in there!

Laurie,

Yes, I know. I do my best to try and keep him safe. I live with the fear of something happening to him due to him being on blood thinners. I preach it constantly. Hopefully, he'll be safer. He's been banned from ladders! lol I wish I could put him in a bubble but that's just not possible. I just pray that God keeps his hand over him daily and try not to worry myself sick. He's always been a hard worker, very independent...so that makes it even more difficult. One plus is that he's always been on the safety side being a electrician at a power plant. His nickname was "Mr. Safety". Thanks for your input. We keep praying, keep pressing on.

Laurie said:

Survivor's Wife,

I think your DH should not be climbing ladders anymore. A fall where he hits his head could be deadly on blood thinners. We had a friend die that way. There was no way the doctors could stop the bleeding. The intracranial pressure just kept getting worse. He slipped on a stair in their home. Add vertigo to that and it's a recipe for disaster.

Laurie

Judy,

Thanks so much! There's were times in the beginning that I questioned if he'd be able to drive again. I'm SO thankful that he is able to. Hopefully he'll get his cast off the end of this month. Life happens...pray on, press on!


Judy In Ontario said:

Hi Survivor's Wife, what great news about your husband's recovery. Congratulations on his ability to drive and I am sorry about his broken arm. Hang in there!