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"What Next?", she asked, not really wanting to know


avantgardener

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Wow, it's been a while since I've been able to write here. There has been a lot going on - my mom had a stroke earlier this week, and that has certainly been eventful. Hers was on the right side of her brain in the occipital lobe, so her speech is not affected, but her balance and coordination are, and she can't seem to see anything in her left field of vision. She was in the hospital having heart problems when it happened, and that was good because at least they caught it right away. She had a pacemaker put in today, which should help, but she is very weak and we don't really know yet what the extent of her impairment will be. The doctor said no more driving and that she can't live alone, and she is NOT going to like that, but the time has come when she is going to have to go with the program and maybe she won't fight it too much. Larry's caregiver will come in on Sunday for a few hours so that I can drive out to see Mom (an hour away), and my sisters and I can talk to her about options. I'm sure that will be a fun conversation - Mom is very stubborn and thinks she is independent, although she has not been for some time, and I know this will very hard for her. Just glad that one of my sisters has been right with her this whole time, because I haven't even been able to get out there to see her and I feel very guilty about that.

 

We had Larry's "welcome home" party last week, and it was great. We had about 50 people, and we were out in the back yard making noise until 2AM...fortunately we invited all the neighbors, so nobody complained! Larry had a lot of fun and enjoyed seeing colleagues and friends that he has not seen since his stroke. We had way too much to eat and to drink, and made a giant fire in our backyard fireplace that got a little out of control but looked very pretty. It took 2 days to clean it all up, but it was worth it and we had a blast.

 

Larry still won't go to therapy. I have an appointment with a neurologist tomorrow, and he does not want to go to that either, but I'll go without him anyway just so that I can get some of my questions answered. I'm struggling with how to accept that Larry just doesn't want to cooperate with my master plan for helping him get better...even though he's impaired, it's still his life, and if this is what he wants I can't do much but concede the point. He did go to an OT appointment last week, but was very unhappy about it and I don't think he'll go again. We'll see - so far he has made it very clear that he doesn't want to go and wants me to quit bugging him about it. I don't know how to help him. I got him into a great speech therapy program at the university where he used to teach...thank you again to whoever it was here that suggested that, I'm sorry I can't remember who it was. Their program is world-class, and there is a 3 year waiting list, but since he was faculty they got him in...of course he would not go at the last minute...I am so sad for him, and angry that he won't try, and trying to get past MY expectations, which are really sort of irrelevant.

 

So, life is very complicated right now. I'm trying to get enough rest (hardly ever do), and eat right (so-so) and exercise (again, so-so); there just are not enough hours in the day. I don't think it will get any worse than this, and that's good, because I'm about full up as far as how much more stress I can take these days. Well, at least I am in good company!

 

xxxoo

-Janine

 

 

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Janine:

 

I was bit worried when didn't see your blog, but assumed you must be busy handling your new life. BTW that great suggestion was given to you by Jean. I feel bad that Larry is giving up on him so quick. make him read Jean's Aphasia journal & let him see how Don is handling it so well. I don't have any wise words for your comfort. I will keep you in my thoughts & prayers.

 

Asha

 

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Janine,

 

I wonder why Bill has never had the desire to work to get better. He certainly had ambition and self-direction before his strokes. It is incredibly sad, not only for them but for us too.

 

I got one of those silly "surveys" in my email today, you know, one of those that has lots of questions about what your favorite color is, etc. One of the questions was "who do you miss the most". Almost without thinking I wrote, I miss Bill before his October 2004 stroke. It's sort of a sad evening here. I'm in the living room watching the Olympics and doing some research and Bill is asleep in our bed. This is the first evening it has really hit me in all the time between the strokes and now - he is here, but he isn't here anymore....

 

 

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Ann...that is so funny...I got what sounds like the exact same survey the other day - it had questions that I can't remember now, but one was "who do you miss the most"?, and my answer was "Larry, before the stroke". It's true that it feels as though he is gone, and someone else is here in his place. The hardest thing to get used to is the way he "yells" at me now. He would never have done that before unless were having a huge fight, which was almost never. It really gets under my skin, and hurts my feelings, although I know it's not really him talking. I feel so despondent sometimes! It is hard to deal with this at this best of times, and when the stress levels go up for whatever reason there is just no resiliance left in me. On the other hand, it takes a lot more now to get me upset than it used to. Small things really do not matter very much when I think about the BIG things that have happened to us. I guess that helps...it's not much of a trade-off, but OH WELL.

 

Thank you, Asha - I thought it was Jean who had that great suggestion, but was not sure and too tired to go back and look. There are some amazing resources out there if only you can find them.

 

xxxoo

-Janine

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Little sir echo here... I miss my pre-stroke husband so much as well. My grandmother said it is like being a widow without a dead husband! As Dick become more difficult to handle I find myself missing having the old Dick who would have known just how to deal with this new Dick. Irony!!

Ruth

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Seems to me like Larry needs a bit of tough love. If you don't do everything for him, he will have to want to get better, worth a try.

 

I am 24 years post stroke and have been alone for most of it, so I had to get btter to look after myself. get it?

 

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