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levels of care


swilkinson

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I guess it is hard for us, wherever we are on the globe, to put ourselves in someone else's shoes. We do that here on this site with somewhat mixed results. I post or blog something then someone else adds a reply. I think:"Where the hell did they get that connection from what I wrote?" I think it is the filters we all see through. I look at your life through the filtered experiences of my own life. So when you say "pie" I think " blackberry" and you might be thinking "apple". It makes communications a very zig-zag path some times and takes a lot of patience. To work out what thoughts are behind what someone else is saying is what shows the depths of our wisdom and the breadth of our concern.

 

Ray and I are going through a rough patch at the moment. I say that tongue-in-cheek as it is really only me. Ray is fine, he has clean clothes, good meals, his seat out on the verandah and all is well in his world. If friends come along and the wife serves cake, that is an extra special day. And a good long afternoon nap and a nice dinner featuring some of his favorite foods makes it another good day for Ray.

 

My world if very different from that. My present levels of frustration are mostly down to his rising levels of care. He is falling more, having more "accidents",experiencing the clonus more at night so my sleep is disturbed more. He is failing in perception now so conversations are more like the "apple or blackberry" concept I started with. He has never been a great communicator so I don't know what goes through his mind. I know now he hates the rush of going to doctor's appointments, the courses we take, all the routines of life annoy him. He tires more easily, pays less attention to what he is told, remembers less. His personal hygiene is starting to reflect this and he is beginning to look that bleary eyed, and bristle chinned specimen of an older, sicker man that we are used to seeing in the doctor's surgery, and he is only 63.

 

But on occassions such as the wedding this afternoon I will wash his hair, supervise the shave and make sure he presents the best possible face to the world. And therein lies the paradox. Because all those who see us and know us will say how well he looks, how good he is doing, how easy it must be for me to look after him now. It is the contrast between the brightness of the special occassion and the dullness of everyday life. I put on as good a front for the world as I can manage. The sentiments here are not what I express to "friends" in the real world. To them I say Ray is doing fine. Because of that I feel unsupported when they turn away, satisfied that I am coping in what seems to them just an awkward situation.

 

The levels of care we all give or need are so different here. There are the "happy ever after" stories of people who have 95% recovered, there are the "sadly slipping into a decline" stories of those whose strokes and other infirmities are slowly taking them to an early grave. I try to look at life on a sliding scale. I try not to envy those whose lot seems easier than mine knowing that many disabilities are hidden as Ray's will be at the wedding this afternoon. I wish I could be honest and open with my friends and still keep them but I know they don't want to know the grittiness of our everyday existence. I try not to exaggerate Ray's disabilities in order to get sympathy or to give myself a martyr's crown. I get by, just facing up to each new problem as well as I can. Life is good between the fractured surface there is some peace and contentment and today a quiet enjoyment of the changing seasons.

 

I wish I was as philosophical as Jean, as patient as Joy, as forbearing as Sarah. I try to do my best here giving words of encouragement to others and a word or two of my own experience to show I do see what they are gong through. I am not Miss Perfect, or Susie Sunshine. As changes occur in my life I cope with them as best I can. At the moment I am trying to go through the mud to reach the hill where I can again see the stars.

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Oh Sue,

 

I just got home from work and read your blog.

 

For a change - I'm not going to have to reapply my mascara before I go to work, I can let the tears fall.

 

And I can virtually reach out and re-adjust your jaunty halo. :Angel: :D

 

You make such a difference in my life, with your words and your insights. I just want you to know that.

 

Even when you are "talking blueberry" and I'm "talking apple" --- I still think your a peach.

 

<<<hugs>>>

~V

 

 

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SUE,

 

I AM A SURVIVOR RATHER THAN A CAREGIVER, BUT I UNDERSTAND THE "FACE" WE PUT ON FOR THE GENERAL PUBLIC, AND THE "FACE" WE REALLY HAVE. IT ANGERS ME THAT ***MOST*** PEOPLE CAN'T SEE THROUGH THE FACADE AND LIKE YOU SAY. "TURN AWAY". TO THEM EVERYTHING IS "HONKY DORY".

 

 

I FEEL THIS IS IN GENERAL BECAUSE THEY DO NOT REALLY WANT TO KNOW THE TRUTH. LIKE WE DO???????? THEY WANT TO FEEL THEY HAVE NOTHING TO CONTRIBUTE TO US EMOTIONALLY OR OTHERWISE........BECAUSE WE ARE DOING SO SO SO GREAT!!!!!!!!

I THINK IN MOST CASES THEY DO KNOW, AND THAT IS WHERE MY ANGER COMES INTO PLAY.

 

 

I HAVE TWO EXAMPLES.

 

1) MY ***OWN*** GRANDMOTHER. WHEN I WENT TO HER HOUSE THIS LAST THANKSGIVING, ( SHE LIVES 3 HOURS AWAY) I GOT " LOST IN THOUGHT", SO TO SPEAK, AND ENDED UP IN THE NEXT TOWN WHICH IS 45 MILES AWAY. I CALLED AND SAID, "GRANNY, PLEASE LET ME SPEAK TO DADDY. SOMEHOW I ENDED UP IN RAINBOW CITY AND CAN'T REMEMBER THE BEST WAY TO GET TO YOU".

 

 

SHE ***************KNOWS, I HAVE MEMORY LAPSES****************** BUT WHAT DOES SHE SAY? "WHY DID YOU GO SO FAR? YOU HAVE BEEN DRIVING HERE FOR OVER 25 YEARS". I LOST IT. I SAID" BECAUSE GRANNY, I HAVE BRAIN DAMAGE AND SPACED OUT, LET ME SPEAK TO DADDY!!!!!!!!!!!!!!"

 

 

#2) MY MOTHER'S BEST FRIEND INSISTED OVER AND OVER AND OVER AND OVER TO HAVE A "CELEBRATION LUNCH", ONCE I PASSED MY EEG TO DETERMINE IF I WAS AT A POTENTIAL FURTHER RISK FOR ANOTHER STROKE AND IF I WAS ALLOWED TO DRIVE 6 MONTHS POST STROKE.

SHE CALLED OVER AND OVER AND OVER ABOUT HOW "WONDERFUL" IT WAS I WAS FULLY RECOVERED.

 

I SAID, "JOAN, I AM NOT AND NEVER WILL BE FULLY RECOVERED AND I DON'T FEEL LIKE A CELEBRATION OF ANY KIND. ****SHE IS A REGISTRED NURSE, BTW********* SHE WOULD NOT GIVE UP CALLING MOTHER AND ME. FINALLY, BEGRUDGINGLY, I AGREED TO THE LUNCH TO SHUT HER UP. ALL SHE DID THE WHOLE TIME WAS TALK ABOUT HOW GREAT I WAS DOING AND SO "LUCKY" TO RECOVER. I WANTED TO PUKE. I FELT LIKE SUCH A FRAUD CELEBRATING SOMETHING WHICH WASN'T A HAPPY EVENT.

 

 

THERE ARE MANY MORE, THOSE ARE THE FIRST TWO THAT POPPED INTO MY HEAD. PEOPLE DO ***NOT*** UNDERSTAND UNLESS THEY ARE DIRECTLY AFFECTED THEMSELVES, OR ARE A CLOSE FAMILY MEMBER, FRIEND OR CAREGIVER. I DO NOT UNDERSTAND THIS IN THE LEAST.

 

ANYWAY, I HOPE MY PIE WAS THE RIGHT KIND., LOL.

 

 

KIM

 

P.S: I AGREE WITH VICKI

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Sue, you got great points there. Like in my case, just two years as a survivor, you got over three times that in caring for a survivor. So you know what you face daily, others are guessing at best based on their experiences. We know that all cases are different in many ways from locations and cultures to the health of survivors and the caregivers.

 

The other part is comprehension, are we understanding what's written before we add a comment. In my cases, I just try to offer a word of encouragement based on where I came from in my recovery. For me that was scary in the realm of the unknown. Those 3 months I had sleep down stairs in my own house because I couldn't walk or climb stairs added 10 years to my age. Now, I see the world in a different light.

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Sue,

Trying to "give advice" to you is like trying to give advice to Jean: I don't think I am qualified. Just as well, you never ask for anything more than an ear to listen. Mine will be available as long as you want it.

 

Kristen

(unfortunately for you, my ear is conveniently located relatively close to my mouth, and they seem to be a package deal :) )

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.

 

Kristen,

 

All of us on this site are equally able to give and recieve advice/opinions. After all, no one person knows it all. Also, sometimes the closer one is to a problem, the less able we are to see the solution.... So never think of yourself as not qualified to give an opinion or a bit of advice. After all, it's never mandatory that we take advice or be swayed by the opinion of others and brainstorming in a group often brings clarity to a situation.

 

Jean

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Sue ((((((((((((((HUGS))))))))))))))))))

 

I do understand the effort of putting on the facade... of everything is fine. We do our best to fit in. To be with people to socialize.

 

Bonnie

 

 

 

 

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Sue

 

peerhaps part of your level of frustration and bitterness is due to your continuing to "put on a good face" for the people in your realtime life outside of your immediate family. it does not appear that you feel any closeness with them at all. i have never consciously "put on a good face" fory anyone in my realtime life except for professional situations, and i have gotten more in touch with who i really am in order to not do that unconsciously. as a result, i have a really good support system and good friends who actually have some understanding as to what i'm going through.

 

i believe that when everyone in a group puts up a facade in order to fit in, when someone has real problems, the others turn away in order not to muss their psychic hair, and the person with problems becomes isolated and bitter. there is no sense of real community, just a facade of a false one.

 

i really do appreciate your presence on the board, your friendship, and your blogs and comments. i wish that you could have the sense of community in the realtime world that you seem to have here.

 

sandy :friends:

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Sue,

 

We at strokenet are lucky that you contribute what you do. Your advice is always practical and dead on.

I know cyberspace isn't real time but there is a real person the other end of the keyboard. I think Sandy is right about putting on a good face. Let it drop at times and let down your hair. Think of it as a mental health thing to do.

Pam

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