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I am working with my best friend in the world to heal after his stroke.  I am his primary caregiver as he has no family.  I do all the shopping, cooking, cleaning, laundry, etc., and just generally try to make sure he stays in good spirits.  We've both gone on the Mediterranean diet in the last four weeks for convenience, and to follow common post-stroke care.  We've also added circuit training, weight training and HIIT.  Now we're both down in weight quite significantly, myself more than he is, as I had more extra weight to lose than he did. 

The main thing that he has lost is rational control over emotions, word-finding/correct word choice for the subjects we're speaking on, clarity of speech and vocal volume/quality.  As he works in a professional industry, these effects are causing his work quality, confidence and advancement opportunity to suffer.  Since he was in the ER within 30 minutes of the start of the stroke symptoms, I believe he shouldn't have to suffer this, if they had only got him transferred in a timely fashion to a stroke facility.  Had he been transferred, I am reasonably sure that he would have received a perfusion study and thrombectomy.  I know this may seem small potatoes to those who have lost so much more, and for that I am sorry if my account offends or hurts anyone.

It has simply been hard to wrap my head around what happened, and with all the information, understand why my bestie was not even checked out to determine whether he was a candidate for thrombectomy.  We did everything right about responsiveness to his crisis and now I am grieving his loss.  When we had our first adult conversation that made sense about two weeks after the crisis, I literally cried.   I broke down because the stress which had been on me, not knowing whether he'd ever come back was so heavy, and it all lifted at once.  I had hope after that...hope.

I know he's been down emotionally over all the abnormality; what he's gone through and still going through has been and is no picnic.  We're just trying to pick up all the pieces now and put them back in place.

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5 plus years out and still very little use of much on the left side and very minimal sensation. That said cumminsfemme the lack of emotional control is better and getting better still but far from normal and is an issue at times with my wife/caregiver.  Remember also sleep is the brain great healer. Everyone here will understand how much this now is as much part of your life as your besties. This persons life would be so tragic now without you. Thank you!

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Welcome to the roller coaster marathon.  This thing sucks a lot, but you learn to laugh anyway.  A lot of the speech stuff should improve with therapy and practice.

I know it's no real comfort but even with the immediate and correct treatment he could have been left with all sorts of ongoing issues. You will both need to look forward rather than back, what was will probably never be quite the same, however you will both adjust and learn and it will get better with time and work. The main thing is don't give up, and try not to stay in the dark place for too long.  There is plenty of help and support available but you do have to ask for it most of the time.  Emotional control loss is very common after stroke and if it's really bad or getting in the way of his life too much there are drugs that can help. I was not patient enough to wait for a longer term "proper" fix and I wanted to get back to my office so I've gone with the drugs and I'll worry about weaning off them once I retire.

Congrats on the diet/exercise and weight loss, those make a lot of other things easier.

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You are both dealing with so much, suddenly everything is different. I had a thought about some of what you wrote. Perhaps  improvement in speech and volume control might come with singing. Singing come from a different part of the brain to speech but singing improves timing so may help.

If his work place is made aware of speech problems they may be more sympathetic and cut him some slack. Word finding is more difficult but comes with practice. Try reading out loud to each other as that helps some people. After one of the strokes the therapist gave Ray  flash cards and he had to make up sentences, this gave him more confidence.

Emotional lability (emotional behaviour) might take a long time to come to terms with but if he can come to terms with it everyone else may too and he might not be as embarrassed, I think a sense of humour helps too.  My late husband Ray used to get overwhelmed with emotions and acted angry sometimes when he really was frustrated so I understood that and tried not to react. And sometimes I would I tell a friend privately what was going on before they met him.

 We are all individuals so it is hard to find a solution that fits everyone. Good luck with the diet, make sure you don't lose weight too fast, not the time now to buy a new wardrobe.

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The deficits that you describe your friend as having are all very  common ones to stroke survivors. lack of control over emotions is probably pseudobulbor affect or PBA, Many here have had it, including me. Sometimes it goes away on its own, and sometimes it hangs around for awhile ( mine went away after 3-4 mos., but see Willis above whose PBA did not go away quickly). There is no therapy for it that I know of, but as Heather said, there are some drug treatments available. Ask his doc. "Aphasia" is the inability to find the right word. A speech therapist can help him with this. I understand there are teaching programs on- line to help with this. Or borrow some of Sue's ideas (above). "Clarity of speech, etc. is a disorder which I have, called "dysarthria". It's a disorder involving the inability to correctly use the muscles involved with speaking and the breathing one does while speaking. A speech therapist may also be able to help with this. Best of luck to both of you, Becky

 

 

 

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Having see what my wife lived through with my (relatively mild) stroke, you have my sympathy and admiration.  What you are doing is NOT easy, and change can be slow.    I don't have any sage advice or works of wisdom, just a few observations/

 

It gets better and easier over time.  Not always (there are patches when it gets worse), but overall it gets better.  Acceptance and coping strategies lead to improved mood. Get a support group if you don't have one already (friends with shoulders to cry on, who will commiserate with you and support you when it all feels too much).

 

If he can exercise, that's a good way to improve mood, as well as general situation.  I am lucky as I can still run, and there are days when I will run for an hour or two, tears running down my cheeks, to deal with anger and upset and hurt.

 

I love the picture, btw.  Hippos are pretty ferocious when upset -- I've been chased by them and it is *very* scary having a couple of tons of angry mammal after you.  And they can run pretty fast, when they want to!

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  • 1 month later...

I am taking care of my husband who had a stroke Oct 27, 2017.  We have been married 30 years, I just turned 60 and he will be 70 in November. Our son with an intellectual disability also lives with us.  I work full time (at home).  I have been writing a blog started shortly after the stroke.  I do not really have anyone in my circle under the same or similar circumstances.  So no one that really understands the caregiving mode and how it changes you and blesses you.  I have a deep faith in God which gives me strength.  But I also want to feel like I am not alone.  My husband is a miracle because they told me he would not make it.  But he is very different, and I actually said the words to my friend that it is like being married to my son.  And then I cried at the realization that I said it out loud. 

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Do not beat yourself up over this. There is a big change in the balance of your relationship. How you are feeling is pretty normal. This is not what either of you signed up for. Stroke affects whole families not just the person who had the stroke. He probably hates the change in his life and who he is just as much as you do.  Look into getting some outside help with his care so that you can go back to being his wife.   Remember that care for the carer is just as important as care for the survivor. Take some you time, share the load, don't try to be perfect. Talk to him about how this is making you feel. Give him a chance to talk about how it's affecting him too.  Consider having a similar talk with your son, this will be affecting him as well though probably not as profoundly as you and your husband. Is there something your son can help his dad with that will take some load off you and provide dignity for both of them?

Hugs, you can and will get through this.

-Heather

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