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My how things change...but not really


avantgardener

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Well, it has been 2 years since Larry's stroke. Obviously I have moved on quite a bit, since I haven't been on this site in a long while. It's funny how it works - as long as I keep moving, it's like when you are swimming and your hair streams out behind you - you don't even notice it. It's only when you stop, and it swirls around you, that you notice it's there. I keep very busy, and for the most part don't give myself a lot of time to think about how much has been lost or what has changed.

 

Larry is well...in a strange way. Since the stroke he has lost a lot of weight, and his blood pressure and cholesterol are better than they have been in all the years I've known him. Physically he is quite healthy except of course for the paralysis, and ironically he wil probably live a longer and healthier life than he would have had the stroke never happened. Mentally it's another story - he has enough brain function left to know that what has happened to him is a tragedy, and he's pretty depressed. Antidepressants did not really help, but being able to stay at home as opposed to in a nursing home has been very good and probably the only saving grace. He has two wonderful caregivers now, and I've set it up so that one of them is here from Friday morning until Sunday morning - that lets me get out on weekends and see friends and have some semblance of normal life. He would rather I was here all the time, but I need some sanity and this is the way it works for me.

 

I've also changed my work situation so that I work primarily from home, as opposed to having to go into an office every day. My boss was very accommodating about it, and it has worked out well for all of us. I can be here to monitor what is going on, and that gives both me and Larry a certain comfort level. My job has me out seeing clients several times a week, so I still need the caregivers, but the rest of the time I'm here and that seems to work out. It took some creativity to make it happen, but I would recommend it to anyone who is a caregiver - much better to be home and have a flexible schedule than to be tied to an office where it's a continual pain if you have to leave to take care of business.

 

When Larry first had the stroke, I think I had the idea that there would be an adjustment period and then things would be normal again. Two years into it, I realize that things will never be normal again - if by "normal" you mean that you will be the same person you were before. I will never be that person again - and that's neither good nor bad, it's just different.

 

Larry continues about the same. He sleeps maybe 12 hours a day and does not engage much with life in general. But he's home where we can look after him, and he has a very pleasant room, and enjoys his TV, and is as comfortable as can be expected. He really doesn't want to get "better", at least not in any way that involves therapy or hard work. This is what he's settled for, and I have to respect it. I wish he wanted more for himself, but he doesn't and I won't make him miserable by pushing him in directions that he has zero interest in going.

 

I try to take beter care of myself, and walk every day, and make sure I have time to myself. Common sense stuff. Seems to work OK, and I've adapted pretty well I think. It's not the life I expected, but it's the life I have...and it could be very much worse so I remind myself of that and try to be content. None of us ask for this or want it, but it happens, and how we deal with it defines who we are in many ways, I think. We always have choices, even when we think we don't.

 

xxxooo

..jm..

 

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It is so good to see your blog...I have wondered about you and Larry. Life definitely throws us some curves and we adapt as we go along.

 

Keep us posted as you are able from time to time.

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Janine, I used to say "life goes on" but now I know it just moves forward. It is closer to eleven years for me, actually April 19th was eleven years for Ray, my caring role anniversary is September 3rd.

 

I'm glad you got some outside caretakers in place so you could have some time off and time away from the caring role, good for you. I understand the "does not want to get better" thing. Ray doesn't either, and does not realise that when you stop trying to get better it is a gentle slide backwards.

 

It is true we need to make the most of what we have...this IS our life...no-one else's and we need to make the most of it. You are a very sensible woman and a very brave one too.

 

As Stephanie says, we adapt as we go along.

 

(((Hugs))) from Sue.

 

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Janine,

I agree with you blog. Life has changed. Ii too, thought that life would return to normal. But, I now realize that this is the new life for us.

William likes to sleep alot. But, i still argue and push his into therapy. He goes kicking and fussing. It has only been 16 months. I so need him to walk.

I was so discouraged this morning. Arguing with him for 20 min to do therapy is not the way to start the morning. I told him that if I have to argue and push him to work at therapy...then I give up.

yes , William is in the best physical condition of his life because of the stroke...except the paralysis. Bloodpressure and cholesterol and weight are perfect.

I just feel that he does not work as hard as I would. But, then he was never as much of a go getter as I am. Maybe i am expecting too much.

 

I just cann't resolve myself ...to the situation that I need to have caregivers hired forever. I just want him to be independent ....

 

 

Ruth

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Hey, I remember you very well, and it is great you let us know life is moving forwards. I want to feel mine is too. I'm just happy to hear you are well and he is too. Time waits for no one and I feel so good about life, having that second chance to live a little longer.

 

Could it be for Larry that the depression comes from lack of daily activities that he would be interested in doing mind wise? Like, since he's home, a drive out to a drive thru eating place, maybe a movie or sports function in the neighborhood. Like a high school baseball game or entertainment along that line?

 

In my case, I'm out in the yard finding stuff to look at and do, then I drive, so I go to the bowling center and visit my old bowling friends, I do mean old! Since you are home, maybe you could interest him in something along those lines. I try to keep up with games on TV just to stay busy. I got appointments I can drive myself to, so that takes up time too.

 

I feel Larry is glad he's alive and wants to do more just he is short on energy, probably why he doesn't care for PT or OT. That gets old after a while to me. I still go to the senior center and use the machines then stay and play card games with the old cooters and veterans.

 

I forgot if Larry is retired military or not, if so, he can get in home care 3 to 7 days a week at home. That will give you a big break for sure. I'm glad I'm home and want no part of a facility until It is a must or else.

 

Again, welcome back and say hello to Larry from Fred!

 

PS, I posted a little 9 question quiz on the message board with the answers, that would be a way to get him going and laughing for a while! Try it today!!

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Janine:

 

I was so happy to see your blog and get snapshot of your life. I wondered about you and Larry all the time. It is sad when survivor doesn't want to get better and gives up. life does go on, and we all have to make best lemonade out of lemons we are handed in. Sometime I feel fortunate that stroke changed path of our life when I was so young, though it gave me kick in butt to reclaim rest of my life.

 

Asha

 

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Janine, hi. I am Debbie, caretaker to Bruce=14 months post. One of my biggest reasons for finding this site was the fact that I too had trouble dealing with the "new"normal. Thanks to these wonderful people, I am learning to adjust and not look back. I was speaking with a Mom in Rehab today, she brings her son, who is a bit younger than Bruce. She's his primary caregiver, but her husband takes over for her when he gets home from work. Her son walks unassisted with a walker, has use of both of his hands. She heard me say that it was a fight to get Bruce to walk at home (he's in an AFO, quad cane with assistance and no use of his right arm or hand) and asked to speak with me. She said it was a constant battle with her son to do anything at home. I too have been toying with the idea that Bruce won't work because he got too used to me doing everything for him. Thank you for the enlightenment- you work, take time away for yourself. I was thinking this may give Bruce an incentive, but now maybe seeing things from your side, it won't. Just allow me to have some semblance of life for myself and just accept that this is the way he wants his life to be. It was nice meeting you and I hope to post with you again soon or in Chat=Debbie

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