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surviving -- is it possible ??


nancyl

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Is it possible we are surviving the stroke ? Our life is no where near the same. Our location has changed, we have lost our "friends" and "family", we have to plan for everything, every event and every "what if" at a event,we deal with IV's and medications daily and weekly and sometimes way, way more than daily, I fail at being a effective mother and Dan at being anytype of father, or grandfather , we have very little enjoyment out of life ( although we do try) , every morning brings the dreaded - arghh what is today gonna bring, we have survived seizures, sepsis, surgeries, neighbor spats ( that is a new concept to me being the country gal i was -lol-) , we have seen and continue to battle depression ( both of us) . we have lost the ability to communicate - with words... the gestures are way more effective ( spoon)... most days it feels like there is no point to life---

 

 

 

 

BUT- yes thank god there is a BUT-----we still have a home, the friends and family obviously were not real or they would still be here, planning isent necessarily a bad thing- ( sometimes i could do with out the back breaking "bag" ), I have learned a lot about medications - and since i worked for so long around them at the jail - i was more comfortable than i would have been otherwise ( so god prepared me) although the IV's are a little tricky. Although i fail being a good mother, i used to be a good mother sooo, god prepared the family by helping me out earlier- so i am not as needed now - ( yes the 14 yr old definatley got the shaft but it could have been worse) . Dan mournes his loss ( as do i of both parenting and grandparenting - i can see it in his eyes) . But we still get them here- and some grandparents NEVER see the grandchildren we do.. Although we havent had a lot of elation enjoyment out of life, we have been able to do things... labor intensive and fatigueing for both of us, we have pushed through and attempted to live- a little-...... not everyday is a bad day - sometimes we get a fun one - so the bad ones make us enjoy the good ones a bit more ( very harold kushner of me) the seizures , sepsis and surgeries i cant find a good spin except maybe we have educated a few doctors (?) -- neighbor spats - i learned one should never move from the country to any communal setting ( also not a bad lesson). And although "words" is not how we communicate primarily we still get to communicate.... "28" and although somedays it feels there is no point to life - somedays it feels like there IS a point to life.....

 

 

So I guess i seek what others seek, for a millennium mankind has looked for purpose... the only difference now is--- i have time to ponder it. I never used to, running around ( both of us ) working to have and provide for our family...

 

 

Weekly ponderings ----- all i can do is shake my head and smile and shake my head again.......

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Nancy, I also will ponder and shake my head, and smile, how my life has changed. Reading this, it brings it home to me how Mr. stroke has changed our life. yet life goes on, and we take what we can make "lemonade".

 

All the best

 

Yvonne

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It seems as long as I spend every minute with Bob, we are the happiest. But reality sets in when he asks for another snack and go into the kitchen to find every dish, spoon, cup, etc - dirty, and every available counter space loaded with things that need washing. I can't get into my walk in closet because too many things from the move are dumped there. I dumped all the paperwork from the dining room table to the garage to make way for son's Xmas visit, now can't find most of what I need for taxes :(

I used all my energy for 2 days when Bella had horrible diarrhea thru the house and it took hours to clean it all up.

I'm thinking I will never get on top of it. In the past, he would go on a business trip and I could drag the hugest mess out and sort it while he was gone. I just don't have those kind of time slots and nothing is getting done. When I make time to get things done, then Bob is just sitting there wilting and getting stupider by the hour.

Life is hard, but the happiest times for us both is when I spend all my time with him, so .... We do enjoy our time doing therapies together and I feel blessed to be able to do them with him. When I'm trying to catch up and have a 'normal looking' house, I feel stressed and he looks so miserable. We just have to find what gives us any happiness and take it, otherwise we are just wasting our lives God allowed us to still have together.

Don't give up Nancy, we all suffer and we all feel blessed, at the same time. You are in good company.

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I think you have it all figured out. And had allot of examples of the good side. Life is tough.... sounds like you two are a little tougher. And those good days are nice to have.

Terry

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Not quite there since I'm still fighting it for whatever reason, but the New Normal is starting to feel a wee bit comfortable. An ambulance drove by us the other day with sirens blaring and I didn't feel a thing, now that's a big step forward.

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Maybe about the time we gain true acceptance we quit writting so much --- i write not just for my own sanity but to leave a roadmap for others - maybe someday i can "organize" our journey and offer "hope" to others just starting the LONG LONG ,LONLEY and SCAREY road called STROKE....

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Working on it, copies off to you soon! Better to document it after the dust settles anyway. Then you have insight, instead of knee jerk reaction.

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You will be impressed, because you have inspired me every step of the way. We are both in the same time frame , hitting three years and yes I feel more normal and less stressed overall ....except for both of my own personal doctor visits scheduled this week. If they come out negative (which I have found out is GOOD) watch out world!! I'm ready to move on myself.

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Nancy, I found for me, simplifying was the best answer. As Sandy mentioned, if I am doing something in or for the house, Bruce is declining. He will do anything I ask, but needs help and guidance. So I have learned to fit that in. No, everything is not in tip top shape, all the time. But, we all know, the one thing we have is time. If it takes him all morning to clean up the kitchen, who cares?

 

I have stopped, finally, making sure everything is done, so that I can concentrate on Bruce's recovery .Bruce has to take ownership of some of that. But in making things easier for me that certainly helps the stress.

 

We are at bare minimum here in the house. There is nothing that interferes with the WC and his movement. Cleaning is easy because there is nothing in the way. My biggest chore in the morning is making the bed and that is for me.

 

The one thing I will share is that I no longer dread waking up in the morning. Once I am up, things get into full swing. Bruce knows exactly what is to be done, what is expected of him. I still have trouble this time of night. Thankful for this site and people to talk to.

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Hey!

 

Guess what? I don't think you and Dan failed at being parents and grandparents. I think you failed to live up to your definition or expectations of good parents/grandparents. I don't see that as failure even. Life has made those expectations unattainable. Still, you are there for your children and grandchildren and are teaching them valuable lessons about life and I hope you can trust my experience with disabled grandparents that we still had fun...and connections. Remember Weston and Dan and the wetjet? Its not the stuff most grandparent's dreams are made of but if Weston is like me, those are the things he'll remember and smile. Ease up on yourself girl. Part of acceptance is a shift in our expectation...often unrealistic expectations that lead us to harsh judgements of ourselves.

 

You deserve more credit than you give yourself.

 

Jamie

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