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You Need Your Own Life


Ethyl17

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I have been talking to a dear friend lately just really about what is going on in our lives. This is one of my group from Grammar School who had the brain aneurysm and then a year later the glue used to fix it was recalled! Can you just imagine?

 

A lot of us caregivers here seem to be in transition. Maybe the season change or just changes in recovery. But the one thing I do know is unless you live this, you really have no clue. Mary Jo gave a wonderful response to a recent blog that so got me thinking.

 

When people suggest it is time for us to have a life, something for ourselves, they don't realize that our lives never really leave us. There is always something churning in our brains! Because it is all on us. Friends can leave the home, tend to their own issues; knowing they have back up, either husband, children or family. For a lot of us, our main support is broken. One can deal with a sick child for a day or so, rearrange work schedules. Take time off for an appointment or a day off from school to help out. But 24/7 for the rest of your life? And when friends figure this out, they are long gone.

 

Bruce and I are working towards no caregivers. We got great news this week that our beloved Jen will be moving back around the holidays and this fits great with the plan. Bruce is now on deck with the exercising every day, he can transfer WC to bed and back independently, he sets up Kira and our breakfasts after dinner and deals with everything independently in the morning. Projects for the winter are finding some sort of shoe he can slide into for transfer and getting his sox off safely, so he could transfer barefoot. Also toileting. Going to begin standing at the toilet to urinate. This means letting go. But others do it all the time. Again my mantra: rote, rote, rote. If we find a system that works and is safe, we do the same thing, the same exact way every single time. Transfer to the toilet and back are on the back burner for now. I may have to get an PT in from work to advise there.

 

But this is all in preparation for me to go to work for four hours a day. When people say you have to have a life - I honestly can't think of anything else I would be doing. And that is where Mary Jo's response hit a nerve. I could take a course - couldn't really focus - but it could be a hobby thing. I don't shop - none of us really do. Money savings. I can walk here everyday for exercise, work in my yard, housework-which I don't love to do, but do feel a wonderful sense of accomplishment when I do. And I think with most of us, having any free time is doing things in our own homes-paint, clean out, yardwork; so I am here anyway. I have a new front porch that still needs sealing. And window cleaning. People just don't understand that I don't want to go off shopping. I want and need to work on projects here.

 

It always sounds like making excuses, justifying. So I have stopped trying to explain. It is not that people don't care, they just don't understand the logistics. My real desire is a few hours in this house, couple of times a week, ALONE. I want to start a project here and be able to finish it without interruption. And this is where Jen will be able to help. She drives a 5 speed (our truck or car) and loves getting out and about. If you remember any of my old posts, that is what she is best at; yard sales, library, dollar store, pool, movies, plus she could always get Bruce to walk a bit. She used to take Bruce every Saturday morning to the pool. Three hours and he came home exercised, showered and ready for lunch and nap. Best money I ever spent. That is my thinking for the Spring. He won't do much here alone, but he will be safe and maybe Jen two days a week to get him out.

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puzzle is fitting together --- man what a big complicated puzzle...and those "gray" areas really tough, but together all of us we are managing ...

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My wife quit her job to care for me when I could not and in a WC too. I got better she returned to work with pay. She has always had her life as she desired and can go any place, any time no problems. I feel the love between the two is important.

 

I hate to see split ups when one has a stroke. The vows say in sickness and in health we shall be together as one. We have our own lives!

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Fred: we have always been homebodies. I traveled so much before I met Bruce. My homes were generic, functional. Finally this one is mine. Funny because it was Bruce's home, I moved in here. But from day one, it has always been "Debbie's house". We added on to accomodate family and friends. Our yard was once gorgeous - not manicured, but just so quiet and peaceful.

 

Both of us had to take courses. I did play poker, but way before stroke, gas prices made it impossible to travel back and forth to the casino, so I did it on-line until it was banned. Now I could not do it anyway. Requires so much concentration and math and I just can't go there anymore. If I can't play my top game, it is no longer fun.

 

I want exactly what you advised helped you the most. I have to go and he has to function, on some level, independently. And it is only for a few hours to start. So am piecing the puzzle together, as Nancy says. Debbie

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Debbie,

 

I feel my help came by getting out that WC. That freed up my tired wife from loading/unloading, pushing me at 210 pounds. Helping me go from WC to the passenger seat going and coming home tired her out period.

 

I wanted that scooter so bad and I got it. Then I wanted my drivers license back so I could drive myself. After a week I got it and couldn't use my left hand and arm yet on the steering wheel. During the road test the lady said One hand on the wheel was OK.

 

My wife was able to return to work at that point. That's why I have said see if Bruce can use his scooter NOW himself in the yard or on the sidewalk or the street in front of the house. That's what I did. All that time I was walking with my single point cane.

 

I had the quad cane before that time. Bruce is a smart man and his speech is not always what he want or what he want to say but he can pass the driving test after a while studying the driving book to take the written test on their computer at the DMV.

 

I wish I could come there and let him see how I do on the scooter and driving. He may not be ready yet but he got to start some time depending how he is progressing with his recovery process.

 

If I may suggest anything you know about just let me know I'm here to help Bruce get independent again.

 

 

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Everything you say is so true! I got offered a job in outside sales with Welcome Wagon, not a stressful or overly time consuming thing but I finally realized it's not going to be possible. I would have to be on the road only two days a week but can't imagine how I would handle it, I am so consumed with Ray's care. I was recommended by a friend who thought this would be perfect for me with Ray, she doesn't realize that I can't be away from him for more than an hour or so, just like the woman who interviewed me, and just like everyone else in the world. This is a bitter pill to swallow. Oh well, back to selling on eBay, that's one sales job I can handle.

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I'm glad I said/wrote something that helped, or at least got you thinking about building your own life. I know how difficult it is. Even since Dan's death I'm having a problem building a new life. It's only been six weeks so, hopefully, the rebuilding will get easier. Hang in there Debbie, one baby step at a time!

 

(((((Hugs)))))

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Debbie,

 

I plum forgot, that's Texan lingo, about adding into my earlier comment that I played Poker every Friday night and all the week end (Saturday until Sunday around noon)at my house at the kitchen table with 4 to 8 or 9 players coming and going. It was dealers choice for the games being played. You had to ante up get your cards then you could fold

if you didn't want to play that game.

 

I supplied the food and drinks so naturally I cut each hand played for two days. Then I loaned out to known guys that would pay me back when they went broke, A hundred fifty dollars was the buy-in and you could sit down.

 

If you lost that I would loan 75 dollars but if you lost that 75 you were finished for that night to go home and think about paying me back to play again another time. We had fun telling lies and war stories.

 

Then I started going to church on Sundays with my wife and no more poker games. Shortly after then I had the stroke, 5 months in hospital, by that time no more guys and no more poker games at my house. Only one came to visit me in the hospital and when I came home no one came except my barber to cut my long hair.

 

I know well what you mean about Poker playing and the enjoyment it brings to your heart and soul but church came first since that time and I never looked back! "I needed my own life with my wife and family."

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PS - you are right about the explaining. When you start doing it, it feels like you are being called on the carpet to justify and you have to explain to their satisfaction. Just stinks to be put in the spot of them expecting you to get with it or explain why not.

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