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Hi everyone - My name is Michael and i'm a 36 year old Caregiver to my wife Meghan (40y)who suffered a hemorrhagic Stroke due to an AVM rupture in her brain stem area in May of 2017.  We spent a few weeks in the ICU and over a month in In-Patient Rehab before coming home at the end of June.  It has mostly affected the left side of Meghan's body, The right side of her face, her equilibrium, as well as swallowing and locking up her jaw.  Because of this we have a feeding tube, Tracheostemy, and are confined to a wheelchair.  Speech is impaired by the tracheostemy to the point that most communication is doing through hand-spelling and basic ASL.   The big wrench in the whole thing is that the Pulmonologist removed the trach a few weeks after we got out of Rehab.  We did well for a few weeks and then she got Pneumonia, and ended up back in the hospital, where the heavy antibiotics caused kidney failure.  So on top of everything we had to do Dialysis for about a month and a half and were lucky enough the kidneys regained function although i feel we lost a lot in the secondary hospital visit both in momentum and additional challenges.  They did have to put the Tracheostemy back in.

 

Now 7 months later we've been at home for awhile and are doing outpatient Rehab 2-3 times a week.  She is also working with a speech therapist on the swallowing in hopes that we will one day be able to ditch the tracheostemy and/or feeding tube.  Although her Jaw is still pretty locked up.  She maintains constant head pain, Lots of daily fatigue, and her right Eye is also giving her a lot of trouble with closing and movement (I think this is a contributor to the balance).  She requires assistance with just about anything  and pretty much needs to be in a wheelchair or bed all of the time due to balance and coordination.  So we have a caregiver come in while i'm at work, and to help take her to rehab.  Overall we've been through a lot and the road ahead still seems very long and daunting.  I fear for my wife's quality of life and happiness as we are dealing with so much, ....more than i realized now that iIve summed it all up above.

 

My life is a constant balance of working, and taking care of everything at home in my off hours.  Staying on top of meds, moving my wife around, fending off medical bills, and constant phone call sessions with all of our providers, insurance, and suppliers.  This has definitely changed me in and I've stepped up to a level i never thought i would ever have to.  But it is also very tough.  I constantly pray for progress and relief - at least some sort of light that things will improve but it scares me so much when the Dr's tell me that things kind of stop improving after a year.  I know I've heard it from support groups and reading other threads that the recovery will always continue if you work at it and i hope this is true.  More that anything I know my wife just wants some independence and that would be a huge milestone for us.  I just want to be able to talk to my wife and really have a conversation - I know that she is cognitively there but shes trapped in this body fighting so much.

 

Anyway, Sorry for the book, I've never really had an outlet like this and i'm not sure how to best put it all out there.  But this is our story up until now...  We had lots of help and support early on from fiends and family - but family all lives far away and the freinds have slowed to to only 2 or so die-hards that try to come visit on a weekly basis.  I am fortunate that my work has been so incredibly accomodating and hope that they continue to work with me.

Thanks to all that have taken a few moments to read this.

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Hi Michael and Meghan, Yes it's a long hard road and there will be many more ups and downs but You've handled the first bit you can do this!

 

The doctors and Insurance like to think that at 12 months you have what you'll get, but don't listen to them. That is old thinking, and as you say if you keep working at it things will improve, maybe not fast but it does happen and will keep happening so long as you are are challenging the brain to keep adapting.  Life probably won't get back to exactly what you had before, but you will both learn to deal with this and adapt to your new life. We never really stop missing who we were and what we used to have, but life is good even so and you need to laugh and enjoy it. 

 

I do hope you both get over the communication hurdle. Independence and a sense of control are vital. Please don't try to shield Meghan from the decisions, She needs to have some control over her own life and body.  Give her options and let her choose whenever possible, even if its just little things like what colour socks she wants to wear.

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Michael, I have gone through some of the same trials as Meghan, and I know how difficult this has been for both of you. And,I'm not the only one as there are others here who have fought the same, or similar, demons. But,each stroke is unique to the one who has it, So, it logically follows that each recovery is different,too. So, it's senseless to compare Meghan to me, or anyone else. But,we all have things in common. One of these is that regardless of the difficulties, it gets easier with time. We survivors and our caregivers either become more proficient at handling the deficits, or the deficits improve. Improvements come slowly. The best way to encourage the improvements is therapy, and whether or not therapy is available, working on the deficits at home.  What Meghan needs most right now from you is encouragement and positive thinking. Don't let the docs convince ya'll that progress stops a year post-stroke. As long as you work on it, progress will continue way past a year. So, don't give up! But it may slow down at some point, and this is where your positive thinking and encouragement will get a real work-out! Good luck to both of you. And please join our  caregivers' chats, Michael. Our caregivers have a wealth of knowledge on everything, and you can get help with anything-caregiving there.   Becky

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It too spent 2 weeks in ICU and 4 weeks in rehab but went to a second rehab at CNS in Bakersfield and it did help, my Dr said its between 18-24 months when your as good as you get but opinions are like Aholes everyone has one and they all stink.

I think its great that your there for her, keep up the hard work as things will get better just takes time and love

Ed

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Thank you everyone for the guidance and support!  I do see how things will get easier with time - it is hard letting go of our previous life, but as we tackle our new life day by day, that old life becomes more of a memory than something that we are striving to return to.  Although its a good memory, I am becoming more and more ok with the idea that we are re-inventing ourselves and will come out of as a different couple than before.  As i said, current goals are communication and independence and if we reach that goal I think we will be ok.

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Whatever you do, ignore the time factor. I am approaching my third anniversary and can assure you that I am still improving my strength and dexterity. My speech is not anything as good as I'd like but daily I continue practicing by reading out loud and also whistling whenever I remember.

Deigh

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Hi Michael,

 

I understand and know the feeling of wanting to have a conversation with your best friend, your wife like ya'll used to have prior to any of the strokes. That's exactly how I feel and it's been a year and a month later. I'm trying to forget the timeline and to take it a day at a time but understand it's hard. My wife is still confined to a wheelchair and working hard at taking steps now and trying to stand for longer. If you can some how manage to get her to stand that's where it all needs to begin. My wife has probably stood a thousand times before she was able to take a step. She's working hard as I'm sure your wife is too. At the moment, my wife and myself's conversation consist of me asking her a question and her ability to express herself. The other side is the ability to express herself again by letting me know she needs a Kleenex or something else. I'm still unable to receive a "how are you doing today or how was work?" so her ability to speak is still expressive. However, I can't forget this was a miracle when it happened because it had been 8 months before a word was said. 

 

I understand and wish you and your wife strength and healing.

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Michael,  you are doing a fantastic balance. 

On ‎12‎/‎6‎/‎2017 at 11:08 PM, MichaelM said:

  More that anything I know my wife just wants some independence and that would be a huge milestone for us.  I just want to be able to talk to my wife and really have a conversation - I know that she is cognitively there but shes trapped in this body fighting so much.

And what you could do is include her in the discussions regarding her care. She knows what she wants to say and can't but you could make a picture board of things and with patience she will be able to converse with you. I understand how hard it is for you and it made my heart smile that not one time did you complain about what happened. That is beautiful. She didn't ask for this as you didn't either.

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