Judy :

you write so truthfully, your blog reminds me of what  my husband had gone through in our our earlier days. Sometimes I am thankful to be survivor & not a caregiver. I don't think I would have hold the fort so beautifully the way he did for us. I hope & pray for your courage & strength to get through all days in your initial journey.

Asha

Judy, we have all gone through those emotions.  There is so much change to accept too soon.  I miss going to my exercise class twice a week, I miss volunteering the way I use to, I miss going to lunch "whenever someone asked".  We just have to learn to adjust and get in a new routine.  That does not mean we as caregivers should not take care of ourselves.  We need that time out.  I know I need to keep up with my doctor apppointments, etc. because I am Larry's sole caregiver 24/7.  The kids all work during the day and have their families to care for.  

This site has been so helpful to me as other friends, family and even doctors do not seem to understand all we do.  

It's good to have a hobby.  MIne is reading.  Keep in touch with friends and family.  Carve out time away from the home just for yourself.  

I wish you and your spouse the best in his recovery.

Julie

Judy, you are doing great!  Like I always say, before my stroke, never though about "caregivers", now and been on this site opens my eyes!  Please that you have found strokenet, and have somewhere to "unload".  You take care, please that you got to go out, that is so imporant to have "me time".   Keep on blogging,  letting us know how it is going on your journey.

Yvonne

Judy, for many years I made a pretty good living as a writer and I just want to echo what others have said here. You write VERY well. Like almost all good writers, the secret to your good writing lies in its honesty and its passion. You care a lot and you show it. I think that probably helps you vent, too.

I'm also a caregiver for a spouse I adore so I can identify with much of what you say. I can understand the myriad of emotions you feel as the new chapter of your life unfolds. Fear, anger, frustration, doubt, love, hope, despair, exhaustion, happiness, gratitude, resentment--they are all part of the mix. Just keep in mind as you go on that much of what you feel today will be different tomorrow and often in a good way. Stroke recovery is a constantly changing process.

Shortly after my wife had her stroke 11 months ago I was convinced that she would be forever confined to a wheelchair. I expected to need major modifications to our house simply to allow her to live in it. I was convinced that I would always have to do everything for her.

Today, just a few months after she finally returned to our house, she is able to get up and down the stairs with no assistance from me, though she does need hand rails, quad canes and a chair lift. Yesterday she walked to the bathroom all by herself, used it, got to her chair lift, went upstairs, got in bed and removed her shoes and brace with no help from me. I found myself marveling at all she can do now that I never expected her to be able to do again just a few months ago. I'm encouraged by that. So is she.

Slowly I am becoming less sad about the fate that has befallen us and more grateful that I still have this woman and we can still relate to each other and share our many good memories. She was always very busy and independent so stepping in to do all that she formerly did is at times exhausting. But I'm slowly getting better at it and our life is slowly normalizing. Whether she will ever be able to regain full use of her left arm and leg is unknown. But based on what she can do now that I never thought she would be able to do again I am not willing ro rule anything out.

I'm close to your age, by the way (70 in July) and my wife is 68. We've been married forever, or close to it. More than 48 years. So she has long been a major and important and cherished part of my life. Caring for her is not easy but I do it willingly even when I feel frustrated and angry and exhausted. Better yet, it is getting easier both physically and emotionally. There is no reason to think your life won't follow a similar pattern. So don't give up hope. And continue using that wonderful writing talent you have to vent as you see fit.

Good luck.

Ron

Thank you Ron, Wow how wonderful you made me feel. Both in remarking about my writing and also about your wife's improvement.  Such encouraging words.  I have read so many forums and blogs and get somewhat discouraged about Rays future.  And reading your comment has given me faith in the future for him.  I am on a roll today doing laundry, dishes, chores, etc.  And I gave Ray a nice "fatigue fighting" breakfast.  After breakfast I put the e-stim on his left arm, and I am also recharging the simulator that is implanted in his back for pain.  So he is being stimulated hahaha.

He asked me a few minutes ago if he could go lie down on the couch.  I never say no, but today I did.  I said you only got out of bed a while ago and you don't need to rest. You are watching TV and that should not be tiring. I said once your recharging is over I would like to try to put you on the exercise bike for a few minutes.  Then you can lie down.  Hmmmmm is that the right thing to do? Well for some reason I think so.  He really does very little movement or exercise and for the past few days I have been encouraging him to at least move parts of his body.  As the commercial says "a body at rest, stays at rest".  Bye the way he hates for me to say that.  So I don't out loud, just in my mind.

So I will cheerfully encourage him throughout the day and if he wants to rest I will let him, but I would like to get a few moments of movement first.

And Ron, bye the way, I have always wanted to write.  I wrote short stories years ago but just tucked them away.  So this blog gives me a chance to simply write what comes from my heart.  Thank you for your kind words, your encouragement about our future and for just reaching out.

Hugs, Judy

Judy :

Maybe assigning some chores to your Ray to do  will help him big time in his stroke recovery. I know once I started doing my chores at home like cooking, laundry, cleaning one by one it helped me on many ways. I felt worthwhile in making contributions in our house hold chores. even though hubby was in pin needles at first thinking  I might hurt myself doing chores, but for me those chores did wonders for my self esteem. I felt contributing member of society & not worthless human being who is burden on her family by surviving stroke. & more you do easier it gets since you find ways to compensate & get things done. I feel with right attitude you can accomplish everything with just one hand

Asha

Well from one coo coo bird to another (and yes, there are even more in the nest - LOL) you are doing great. Judy, the emotional ups and downs do even out in time, but even five years post, I still have times when I am just at my wits end.

And sometimes you do have to say "no". With Bruce, anyway, if he truly wants it, he will just insist. And since Bruce rarely does that, I go with what he wants. And really you are establishing a good routine - we get through breakfast, Estims, back stimulator and some bike, then rest. And you do that every morning, same way. Evenutally he will just work through it and know he has his rest time factored in.

Glad to hear you were able to get out and maybe found some time for the Afghan. Hugs, Debbie

Judy, you mentioned an "e stim" device that your husband is using. What exactly is that? My wife uses a functional electrical stimulation gizmo on her bad arm but I'm not sure you are referring to the same thing. My wife's device, by the way, hasn't yet rejuvenated her arm but it has made if a lot healthier by simply opening and closing her hand. Her fingers are no longer gnarled and are straight and soft. There is also no pain now. So even if the hand never comes back to life the way it was before the stroke we feel that the device has had a very good effect. There is less danger of atrophy, I'm sure. How about your husband? Since his stroke is so new I doubt that he has had time to get a lot of results but I am curious if he has had any thus far.

Incidentally, I am pleased that you found my earlier post uplifting. 

Take care.

Ron

Hello again Ron.  The e-stim I spoke of yes is probably the same. Two pre-wired electrodes  attached to his arm makes his hand rise and fall.  He still has no use of his hand, but I have noticed a slight movement of his arm, which he doesn't seem to realize, but I do. He can push against my hand with his arm forward and pull back some. He could not do so before.  

Right now the main problem I am having is that he only wants to rest.  The slightest amount of movement seems to tire him.  I try to encourage him to push past the tired just a little.  I even encourage him to move something while he is lying down or sitting. To move his legs up and down, or just any type of moving.  He falls asleep the minute he is on the couch.  And now his excuse seems to be he has a headache.  Ray has had a few other medical challenges in the past and therapy has always been something he simply does not like to do.  I am hoping that something or someone gets through to him, but I do worry that its not going to happen.  I cannot will him to move, and if I could you bet I would!

I am encouraged by all of the advice I get from these blogs and posts.  So many nice people here, so much knowledge.  My positive attitude about life is the major thing that keeps me going.  I just wish I could help Ray.

Hugs to you and your wife.  And I loved how you described your wife's hand, straight and soft.    

And yes because my husbands stroke is still so new, I do hope there is light at the end of this tunnel.

Smiles, silly giggles and "thanks"

Judy

Thanks for the reply, Judy. I have a feeling that Dorothy's stim is somewhat different. It's called the Bioness H200 and it uses a computer program that a clinician has to set up and tweak. It clamps on her arm and the electrodes are attached to it. It is completely wireless. Insurance almost never covers this contraption, of course, so it set us back $6,600 when we bought it after renting it for a two-month trial run.. So far, I think it was worth the cost purely for the change in the healthiness of that arm if nothing else.

I understand you concerns about Ray's lack of motivation and hunger for rest. I would only point out, ever so carefully, that his stroke was very recent and that rest is a key part of the healing process. So maybe his constant need for rest is his body's way of telling him he needs lots of "healing time." The lack of motivation could be connected to the hunger for rest. Also, he could be depressed, which is common among stroke victims. Dorothy has had almost no depression but her rehab doc still prescribed a very low dose of an anti-depressant called Cymbalta. We are now reducing the dosage and plan to take her off of it entirely before much longer. I have no reason to think it did any good or any harm so to me that makes the case for discontinuing it. I don't think any medication of that nature should be taken for a long period of time unless there is a clear and discernible reason for doing so. 

As for helping Ray exercise, for his arm you might want to investiigate a very nice device called an air cast. You put the arm in it, pump it up (a simple ball pump will suffice) and then slowly raise and lower the arm or make "snow angle" motions. The idea is to increase the range of motion while supporting the elbow. One of our OT's introduced us to this device and encourage us to buy one. We did and we're glad. Ray, of course, should do all he can to raise and lower the arm himself. Such brain coaching can be very helpful over time.

Nice to hear from you, Judy. And hang in there. Ray is probably making more progress than you realize. Remember, since you are always with him you are seeing a movie, rather than snap shots. Gradual changes can be hard to spot when you are that close to a person. So pay attention to the observations of friends and family who see him less often. They may have a whole different take on how he's doing.

Take care.

Ron

Again, thanks Ron.  All advice and comments are welcome. I have read quite a bit about post stroke fatigue. I know it is a real condition and I will ease up on the worry for now.  He is also on Cymbalta, in fact they increased his dosage since the stroke. He was on it before, as they were trying to treat his headaches with it.  I will look into an air cast.  Yes I do see him all of the time and  I will listen to others.  In fact my daughter just called to tell me she will be bringing him home soon and I asked her how he was doing and she said "he is ornery" Hahahaha, so could that be any indication??

But thank you and I will try to look at my journey through different lenses!  This is just one day! Tomorrow is tomorrow.

Thanks, Judy