Butch,

You've got to change the way you view your 'coaching and cheerleading' and stop thinking of it as lisa has no motivation of her own. The stroke temporarily took her motivation. She doesn't mean not to be self-starter anymore but she's got to rebuilding that skill and confident all over again like a little kid from 2 to 5 years old. So we caregivers have to nag, coddle, coach or threaten the therapy sessions out of our care recipients and we have to loss our attitudes that we should only have to say something once or twice and the issue is settled. It's not. No matter how many times Lisa says 'I can't' or 'I don't know how' try to remember that maybe she really can't do those things without the constant retraining and reminding that she can. You don't show a 3 year old how to do something once and expect them to remember it for the rest of their lives. Stop thinking of yourself as a tyrant and starting thinking of yourself as a teacher. The shift in attitude will take the frustration, resentment and guilt away from you. Eventually that self-starter, do-it-on-her-own part of Lisa's personality will probably come back---my husband's did after a long time---but in the meantime just think of it as another thing the stroke rearranged in her head and that she has to relearn all over again with repetition/help from you. I'm not saying for you to do FOR her when she's in a "I can't" mood. I'm saying teach/show, be patient and sometimes you'll have to walk to another room while she struggles if you can't stand to watch.

Jean

Butch,

Jean gave you a great answer and some practical advice, I hope you take it on board very seriously. When I read your very real, sincere frustration, man my first impulse is to jump all over you from a survivor standpoint. But I won't. But the motivation is something that will come back, it is just blocked right now. You've got to remember it all takes time, it is measured in inches. In the meantime, you've got to somehow find a way that you are comfortable with to cope.

Yeah, the divorce rate is high and for good reason. I am one of those statistics since my stroke. But I hope you can find a way past your negative feelings of seeing the future in a negative way. You seem to be discounting recovery and gains that will take place in the future.

Pam

Butch

It is an attitude thing with Ray. We have been married 36 years so we know each other pretty well. I've been cheerleader here for six years and it does get tiring. But it is 'move it or lose it ' so exercise has to be done.He is unmotivated since strokes in 1999 but if I say:"Come on mate, it has to be done, let's do it now and get it over with, then a nice cuppa, right?" a sort of pragmatic approach, he does the exercise.

For me the tiredness is now part of life. It regulates my day because of Ray's need to sleep all afternoon we are now morning people. I get tired toward the end of the day too because I do all the house and yard work so I space out for half an hour around 5pm.

BUT there are a lot of good things in our life, it isn't the life we want, it is the life we have chosen. Well I have chosen to stay and look after Ray. Ray, like Lisa, didn't have the choice!!!

hey Butch:

Jean said nicely though I m getting quite offended at your thinking as a survivor. how much love you had for your wife that once going got tough, you want to blame it on her that its her fault and take easy way out, it depresses me to core that I saw 2 examples of guys o this site want to take easy way out, by blaming whole world but themselves. you know how much loss lisa encountered, I don't even want to think your loss or ur way of life. put yourself in her shoes and think what would you had prefered if it was you who had suffered stroke.

I know its your life and you don't have to justify your actions to anybody. but I m forming my own opinion about western men

I m sorry for harsh words but blame it on my damaged brain.

Asha

Butch,

I stroked abroad so hubby was there with me 24/7, just about, for the first week. When we got home and admitted to hospital, he said he needed to go home for a while, then come back with his Mum and our 2 children. I just panicked I didnt want him to go... how was I going to cope, how was i going to comuinicate. Here I was in a safe hopital environment, but panicking.

Lisa has only just home from a long stay in hospital and rehab. She is proabably very unsettled and unsure. It is a narrow line between helping her too much and not enough. You both have a steep learning curve, you are also feeling unsettled and unsure.

From reading your previous blogs I think you care very much about Lisa. Try and get thru this for both your sakes. I am sure it will get easier.

Mary

Butch,

It seems you are still new to all of this. I too am a caregiver and what you are feeling right now is more than likely tired frustration. I can't tell you how to feel just that you are not alone and it will get better. You are doing the hardest job of your life something you were never prepared to do. But, your doing it and I am sure it is making a difference. It will take time, but your wife will become less dependant on you constantly being there. One thing I did was to discuss the situation with my husband and explain all that I had to do and that his job was the therapy. It really does get better, I have been in your shoes. Your tired, you have to take care of everything, your frustrated at the speed of the changes. You may need some "me" time. Get someone to stay with your wife go to a game with friends, or a movie. A little break goes a long way.

Lynn

Butch,

I needed my husband's presence to get me through tough therapy times. It takes a survivor a while to comprehend what we can/cannot do. I remember my hubby coaching me through lots of depressing days, and I couldn't of done it without him.

Yes, it was hard, on both of us. Which situation is worse survivor or caregiver?

Don't know, but survivors have good meds to help numb the pain.

Still 2 yrs post my stroke I still have to motivate myself to do my exersizes. It is truely hard to do, we want to get better, but the race seems so long to travel alone. Please hold her hand, and reassure her your commitment you made XX number of years ago. "This is the real:through sicknesss and health."

I'm just a survivor, don't know much but surviving.

The emotional pain started for me once I left the hospital and saw how helpless I was.When actuality, coming home, is when the going got tough.

-Amy

Dear Butch,

Please take into consideration what Jean, Amy and Lynn have said. I too am a caregiver and there are times it is very tough and I want to throw my hands up in the air and run as fast as I can from it all. Normal feelings. I love my husband, kids and parents too much to ever turn my back on them. There are many good people on this sight that will let you vent your frustrations and not put you down for it. Every now and then it is all right to have a self pity party as long as you get up the next day and begin anew.

Butch

I feel for you, man. This is a hard thing to do and it can be really over-whelming at times. Everyone has given you wondreful advice, I hope you listen and stop being so hard on yourself. I remember when Patrick first had his stroke thinking "I did not sign up for this." And I didn't! But I love him and would never rationally turn my back on him in his time of need, no matter how long that time lasts.

On a more practical note, does she have a schedule? I find Patrick does much better when I write on our calendar everything we/he needs to do at what time including my work schedule and all our appointments. He gets worried and stressed out when he doesn't know what's going on. Having a routine will also help her learn to do things more independantly.

Take care. We all have guilt over wishing we didn't have to deal with this anymore. Cut yoursel some slack.

Kristen

i identify with evey post on this blog entry. i filed for divorce 8 months after i stroked because my ex-husband was not there for me and was collapsing over the fact that i might no longer be there to take care of him. he would have never left on his own steam and it took me 13 months, $25,000, two separation agreements, and the NYC Police Department to get him out of my house.

my neurologist told me that most male stroke survivors have their wife standing by and taking care of them, but most female stroke survivors end up divorced. when i previously posted this, the male caretaker who objected to this on this board wound up leaving his wife. i find this, in my experience, to be true. i don't know if this is social conditioning or something else or some combination of factors.

as jean's signature says, "caretaking is not for sissies" (wasn't the original quote about aging, or old age?) from your blog, your situation is very, very difficult, and i wish you the best of luck in dealing with it.

sandy

ps-it's November 30 and over 65 degrees in NYC, which is definately unnatural. however, there's no global warming-just ask this country's fearless leader.