hey Betsy :

your blog reminded me of how I felt 10 years ago when I joined this site & started blogging. Even though I had great family & friends I felt people on this site  understood me better & them offering me support felt more genuine than  from my friends and family so called "normal people". Once I started blogging I found reading & writing blogs therapeutic for my soul. It never  make me feel alone in my journey.

Asha

You write wonderfully, not just because you know how to construct sentences but also because you are so amazingly open and honest. I admire that more than you can imagine. After I read this post I went back and read several others you had written and all of them were equally impressive.

If I read your profile information correctly, your stroke was fairly recent. If so, I would remind you of the obivious, which is that the damaged brain heals to one degree or another but it usually takes time.

My wife was at first much as you are. She couldn't get around except via wheelchair, she was in a lot of pain and she was painfully self-conscious to the point of being very emotional when old friends called or dropped by. But to her credit she kept plodding ahead, working to get better and to overcome her feelings of being less a person than she had been prior to the stroke. She went to her therapy sessions, practiced her exercises and pestered me to help her if I started slacking off. Slowly she improved. She graduated from a wheelchair to a hemiwalker to a quad cane. She mastered the mechanics of getting in and out of our vehicle with only a little assistance. She learned to walk up and down the stairs, at least some of the shorter ones. I still remember that glorious day when she was able to walk into one of our favorite restaurants rather than being rolled into it.

I guess what I'm trying to say is that Dorothy has made a lot of progress as the one-year anniversary of her stroke approaches in two days. When I see her I don't see a woman who is less able than she was before the stroke, I see a woman who has made remarkable progress and who reminds me of what I have known for the nearly 50 years we've been together, which is that she is a strong and capable woman. I admire her more than ever. And I constantly feel grateful that her stroke didn't end her life and didn't rob her of her speech and memories. I feel fortunate to still have her and to be able to give her the care and assistance that she needs. She in no way burdens me.

Of course, all strokes are different and so are their victims but if you gather anything from my posting I hope it is this: Your stroke didn't change who you are, it only changed how you do certain things. It may have taken away some things but it also gave some things. You did nothing to cause the stroke but you have the power to do something about its effects.

No one knows how fully you will heal or if and when the healing will end but some healing is as inevitable as it is frustratingly slow at times. In the meantime, everyone can see how you are coping and adjusting and working hard to do all that you can possibly do each day. They are almost certain to see much to admire in that. So you need not feel self conscious or in any way inferior. On the contrary, you are within your rights to feel frankly superior. After all, you are doing things most people have never done because thankfully they haven't had to..

I like to say that it is best to concentrate less on what has been lost and more on what is still present and what has been regained since the stroke. Dorothy and I both talk about that a lot and it almost always makes us grateful for what we still have, especially each other. In some ways, we actually have more than we did before the stroke. For example, our relationship is arguably stronger than it has ever been. Over the many years of our marriage we had slipped away from saying "I love you" to each other on a regular basis. Now we say it a lot and never fail to say it at bed time. I think that is because we feel our love more acutely than we ever have. Nearly losing the love of your life has a way of focusing you. 

Good luck to you, Betsy, and please keep blogging your feelings across this forum. We understand. And we appreciate the strength you are displaying in each well constructed, powerfully felt sentence. Be advised that your postings not only help you, they help those of us reading them.

Every word touched my heart and soul and it is healing to be heard so thank you.

 Thanks Asha for encouraging me to have and to share a voice.

Thank you for the perspective of someone living intertwined with a stroke survivor because I needed that. And thank you for your amazing story about your wife which gives me hope that I will be walking into my fav restraunt too sometime soon. I am impressed and overwhelmed by your story which is truly a love story as well as a story of survival and coping. I just need to read this a few times and process it and consider those new ways of viewing myself. I like that you pointed out that my power and control now lies in dealing with the effects of it.

Bob was pretty much 'in hiding' also, after his stroke.  He didn't want to be seen 'this way'.   A couple of occasions, we were out at therapy, next to a bank, and he would see someone from work by accident, and they would come over and be so friendly with him, that he began to see that they still saw him as 'Bob'.  

He has balance problems and gait problems, but thru a huge amount of therapy, he can walk from room to room or in and out of doctor's offices, with me spotting and holding his gait belt.   This was monumental for me, because I didn't have to load and unload the wheelchair.  At first he had to have it, but he learned more and I also got my experience at spotting him, so he is safe with me walking now.   I watch his feet, I feel the slightest sway in his body, that would lead to off balance and can immediately pull his weight into mine, and balance us both.   

We recently went to a work reunion, and he had a great time seeing everyone again, eventhough he has aphasia, they all gathered around to talk to him, he was very popular at work.   He feels much more comfortable in his own skin now, now that he no longers fears 'loss of image' in front of others.

I know just how Bob feels and you are such a great intertwined person for him. I too can stand and step a bit as long as someone holds the belt and I say to them that we are joined cuz we all go dowm probably especially on the dang stairs which terrify me. I always hated stairs anyway when I could walk I would go down slow and hold the railing. It is really hard to wobble out there in public when I get out of the car. Vanity I know but it is such a personal image loss to be so vulnerable and less than the strong person I saw myself as being. Conceited but not really it was just ME normally walking in someplace and now I am in such a ugly uncoordinated mess of it and I am a competitive sort I guess who doesn't want others to see me this way. You nailed my true feelings and I am processing this and just holding on to it a minute here because that is the true pain to be seen as inadequate and inferior.  I don't see myself as superior for doing this challenge but I certainly see Bob that way and isn't that interesting that I can't see myself that way.

A caregiver's perspective is so valuable. You see the strengths and gains and I see and feel the losses. I wish I could see and feel this differently. It helps to see it in writing and maybe it will imprint on my soul. I know I make this a bigger deal in my own mind than it probably is to anyone else and it is all meaningless vanity really and I need to take myself as I am which was never a big deal to begin and so who do I think I am lol. it is wonderful to hear about the healing inside for Bob to see he is still accepted and valued and to believe it in his heart. I think it also speaks about how special he is to others to begin with and I think you are a wonderful couple working through this together. I hope you also know how important you are in this script and what it means and says about you and your life as you participate in this. I think all caregivers are imposed upon by a situation imposed upon a loved one and they jump in and rescue when they are not the ones drowning and they could very well swim away but they don't. They are true heroes.

It is really helpful to get feedback. I realize from reading these comments just how distorted my thinking has become in my fear. I fear being not accepted or valued anymore. But mostly I fear the loss of myself in this as it was pointed out I should still consider myself as ME but see I don't recognize myself sometimes in emotions or in this broken body. I need to learn to love myself in this wretched state even though I don't know how much I loved myself before this happened. If I can do this then there will be the brightest silver lining in all of this situation.

I am glad that Bob and Dorothy are so loved and I thank you for sharing your story.

Betsy,

I continue to enjoy your postings. Through you I am gaining insight into some of Dorothy's feelings and frustrations, which I am sure have been present in abundance as she has slowly advanced. I think your fear of stairs is healthy in that it will hopefully prevent you from taking a nasty fall. At the same time, I think it is a fear that you will eventually overcome. I hope you have had or are receiving good physical therapy. They are the folks who can show you how to go up and down stairs, get in and out of cars and walk better. In our house, we  have two primary stairs. The first is a short one that runs from our garage to our first floor. The stairs were already very short and shallow before Dorothy had her stroke. That's because I had hired a brick mason to install "geezer steps" that our old wonderful dog could handle after her hips began giving her trouble in the last years of her long life. She's gone now but the stairs remain and now they work great for Dorothy. After the stroke, we did have some rails installed on both sides of those stairs by a company that specializes in home modifications for people with mobility problems. Dorothy uses them every time she's goes outside and she raves about them. Our other stairs are longer and steeper. They go from our first floor to our second floor. We knew when we bought the house 15 years ago that someday this stairway would be a problem for us as we got older. And we were both very careful to use the handrail when we went up and down them. They are way too much for Dorothy to handle now so we,had one of those chair lifts installed. It works like a charm. Dorothy can get on and off of it with no assistance other than her trusty quad cane. I keep a quad cane at the bottom and top of the stairs (and the shorter ones running to the garage) so that she will always have one when she enters or exits the stairs. These little tweaks can make a big difference as time goes on.

I could tell you a slew of other tweaks that have made life easier for my independent-minded wife but I don't want to bog down this blog. As you continue to recover you'll probably find the need for some tweaking of your own. If so, I'll be happy to tell you some of the things that have worked well for Dorothy. This is a long learning curve for sure.

Just so you know, we no longer use Dorothy's gait belt. I guess we probably should and I keep it in the pouch behind her wheelchair just in case but for Dorothy being able to walk without a gait belt is another sign of progress. Of course, when we are out in public, on unfamiliar terrain, I usually walk close beside her with my arm around her back so that I could catch her if she stumbled or slipped. That has only happened a couple of times and in both cases I easily steadied her and she never came close to actually falling. I'm starting to be grateful for all the years I spent going regularly to the gym.

Betsy, what I hope you know and derive comfort from is that many of us who come to this forum know exactly what you are feeling and experiencing and we therefore know that things get better with time and patience. So hang in there, no matter what. And never lose sight of the fact that you are still the same person that you were before you had a stroke. You may be a modified version, but you are still you.

Take care. 

Ron

Hi  Sassy, that is how I felt four years ago. Now I hold my head up high, and tell myself "I did not do anything to have this stroke".  Even when I am feeling pain on my right side,  or I can not put my  thoughs into words, I  say  this is the new me and I love it!

Yvonne

That's a great attitude, English. Hang in there.

Sassy, I will tell you about the height of Bob's emotional battle with his self image.   It was the day that we went to clean out his office, after his medical leaves were complete and it was obvious he wasn't coming back.   We worked all day to clean out his massive books and shelves and drawers.  I was worried about if it would affect him emotionally, but he showed no sign.  See... this man loved his job more than anything.   He would rather be working than anywhere else in the world.   So....   all seemed to go alright, we came home, nothing seemed awry.

The next morning, when I got Bob up, he looked at me with a little panic in his eyes (uh, oh, tears are falling down my face as I think of this).   He said to me, "I'm Bob".  I just looked at him, wondering why he said that.  Again, he said, "I'm Bob.   I'm Bob."   I said.. I know that.   him:  I'm Bob.  Me: I know that, why do you keep saying it.   him:  panicky-  I'm Bob, I'm Bob, I'm Bob... but when people look at me.... do they still see Bob.... or just some old guy who looks funny.   (said in somewhat aphasia talk) This was it, he lost everything, not just his job that defines most men anyway..... but his healthy hiking, exercising, biking self, he did all those things, his standing in front of people around the globe and they all flew in from neighboring countries to hear HIM.   He lost his words, his sight from nose over, his ability to move his body, his ability to read and think things thru.  I remember the day he got a clear thought/sentence across to me, and said, "I can't believe I'm stupid now".    I think he was able to say this, because he had been thinking about it all day and saying it over and over in his head.   The guy who used to make power point presentations, given internationally, didn't know how to click a mouse, nor even read.   No bathroom controls.    Totally stripped of everything he perceived himself to be.  Was he still Bob?  Was there any Bob left after all that was lost?  

I don't see all that's missing.  I just see Bob.

This story just makes me sob with the unfairness of it all, and for the great love you have for Bob and for his strength in holding onto life and to himself, his name, and for the journey of discovering what is the meaning of identity anyway and is it ultimately love that makes us real after all just like in the velveteen rabbit story.

I am viewing how strong everyone is on here.

I can't imagine watching a loved one going through this and being strong in the exhaustion and painfulness ot it all.I hope you have support and physical help too.I understand how you see Bob always and it is just the same as when I look at my adult kids and I see them as this total picture of some rapid collage of images from birth to now. They are so many thing that are rolled up into one thing that makes up them. Change doesn't diminish any of it.

I would be so scared if was my loved ones instead of me.. In a way you are left alone to take care of everything and do be strong for eyeryone and yourself. I like all of you because you are  strong loving loyal persons.