I always loved this photo of Paul...it was taken in a castle in the Gorges of Tarn.
I took it at the end of a long day of exploring....Paul is always game for exploring every tiny road...even if it leads to a dead end and we have to back up for a mile.
We've done that several times.....and a few times I've refused to stay in the car......
One of the hardest things about Paul's disabilities is the fact that it disables him from his natural sense of exploration. Now he is reexploring the kitchen and the the nuances of the car and couch.
I don't want to see him lose his passion....his drive. I'm wondering if he can continue to keep up his spirits....his sense of wonderment.....with his limitations.
I know...many of you are going to give me a line of crap..."oh it's all is his viewpoint...keep looking forward...etc." How many of you have been faced with such tragedy...and for such an extended period of time?
There isn't one aspect of our lives that hasn't changed. Even our sleeping patterns...we were night people....loved the late nights....we'd work til 10ish and then sit down to watch a movie. Usually going to bed on the far side of midnight.
I just put Paul down...it's still daylight...7pm....he started dozing around 6.
Paul use to do the long distance driving...and into the city. I did the neighborhood driving....that hasn't changed.
So I guess I'm exaggerating.
Paul handled all the expenses...taxes...Social Security etc....it made him more comfortable. It's not a bad thing that I have had to take a crash course in finance. I'm doing fine. But I am nervous about switching to a no-earning household into retirement status. Not sure how we'll fare with the wild expenses and a huge cut in salary.
Sure we'll find out....as the rest of the nation is in the same boat.
I loved our life together...we were so close and had so much time together....and solitude....and peace....security and freedom....emotional freedom.
It is now so demanding and scheduled....not unlike having an infant in the house.
This week Paul started out-patient rehab at Kessler. It's very demanding...but in a good way. Paul loves the hard work...it's physically demanding. The physical & occupational therapy are excellent. The speech therapy....not so good. Thank god, we started with the speech pathologist....she's excellent. Katherine comes to house on Wed afternoons. The only problem...I am suppose to supplement his sessions....three times a day.
It is impossible.
I can sneak in one or two...but Paul isn't keen on having me drill him constantly.
The amount of pressure on me is enormous....I feel as if I'm totally responsible for his progess.
You wouldn't believe the work that is assigned to me.
"get Paul's records"
"set up the muffin tin game"
"the fix-it project" (holy shit...I just remembered that I haven't done that yet)
"Sing another song...5 or so a day"
"make sure he does four sets of twenty - 3 times a day"
"put on his compression glove"
"he should wear his splint 2 hours on and 2 hours off- total of 8 hours a day"
"make sure his pulse rate is above 50 before you give him this med"
"don't give him this med if his blood pressure is too low"
"make sure you sit on his right side"
"don't sit on his right side...it's hard for him to see you"
"watch his right arm...he forgets he has it"
"trace the alphabet"
"have him blow out matches...bubbles...blow toy"
"ice his hand"
"put heat on his shoulder"
"fill out the forms and get a letter from the doctor"
this is just the tip of the iceberg...this is after I give him a shave...haircut...manicure...pedicure....lotion his feet....help him brush his teeth...get him dressed and not to mention the unmentionable...bathroom duties.
One thing that we really are working hard on is getting a clear 'yes' & 'no' answer.
Paul knows his answer...but it comes out jumbled. This is especially maddening in the middle of the night.
"Paul do you have to pee?"...
"nay"
"is that a nay, yes or a nay no?"
"nay-nay"
I get up and turn on the hall light and he looks up stunned as if to say "what are you doing, I'm trying to sleep".
An average night is 4 trips....a good night 2....a nightmare night 6.
Kinda hard to function the next day!
Can you imagine not being able to ask the person you love a simple yes or no question?
We were driving to therapy & I was thinking about the drive I was going to make the next day to the accountant....taxes.
"Hey hon, is it under an hour or just over an hour to Christine's?"
"when...whenna...when...wheennn...when?"
"Paul could you just say yes or no?"
"when, when, whennnnaaaaa?"
If he wants to give me additional info that requires more than a yes or no answer he gets stuck.
I can't begin to express my pain....the pain of losing his conversation. The endless stories that I tried to memorize....the joy he had in telling me.
I find myself rocking in grief...not sure if I grieve more for him or me.
I grieve for the nonchalant way the world responds to our lose...a skipped breath...blip in the radar.
Doesn't anyone else miss this man's brilliance?
I could scream at the universe....yell at the gods....curse the mailman....kick the cat.
But all I do is cry....by myself....in corners.
I'm sorry about posting such a difficult post....but I think that too many caregivers are sitting in the shadows and suffering silently. If I can give a snapshot of what so many are going through...letting the world in....seeing how the other side suffers....if I can help one person or if one person realizes that someone understands.....maybe a shoulder to cry on.......
then maybe my tears are not in vain.
28 comments:
I am a caretaker for my 80 year old father. It is isolating and depressing. I watch others as if through a glass wall going about simple daily tasks that I would love to be doing. The worst is the mental, I can never stop thinking about his needs.....but I will do this and continue to take it day by day...just can't look at the big picture.
Theresa...you'll never know how much your post means to me....especially today!!
Just knowing that someone else is out there looking through the glass with me...makes it a little less lonely.
with love to you,
Linda
Anthony here, Linda, in Oklahoma. You're a saint, and reading your words I realize being a saint never was easy. I wish I was closer, so I could visit you and Z and make you two laugh, and just serve as some sort of general factotum to help with the work. Right now I'm just sitting here with Baubles the puppy on my lap, staring at the screen, wishing words themselves, delivered from a distance, could make matters better. I pull for you two every day, for better days to come and for lives to be regained. You're always in my thoughts.
You asked a question, "Doesn't anyone else miss this man's brilliance?" The answer is yes. I read Dr.Z columns, books and web posts from the time I was old enough to read. For many years I have read every column he wrote. I appreciated his humor, his dedication to charting games, his knowledge of the game and the way he would link everything together with one of his stories. There is no one to fill this void. No one else writes as knowingly about the history of the game. I found myself wondering during the Star Spangled Banner at the last Super Bowl, "who is going to time it if not Dr.Z?" :) I found myself wondering who would fight as passionately as he has about Hall of Fame issues? Mostly, I find myself a little depressed each time I log on to si.com and don't see a Dr.Z column. I never met him, but I feel his loss. I want to let you know that I appreciate your posts. I appreciate knowing that you are taking care of him. When I read your posts I sympathize with you that your life has been turned upside-down. That you have lost a companion and have become a caretaker. I hope and pray that every day you will find moments of happiness to keep you going.
-- Paul
I dont know what to say Linda, I felt tears in my eyes just reading what you are going through. It must be very tough for you and for Paul also.It is normal to mourn the life that you always took for granted and enjoyed immensely.Life is very fragile and seeing what you both go through,make me think more of what is important in my life also.
Take care..A BIG HUG to BOth of you..
AnnaMaria
Anthony again, Linda. I just want to underscore what Paul wrote so well, above, about Z's writing---his art with a capital 'A.' I read his Power Rankings in order to see how hip I am to his many references, not because I'm that big of an NFL fan. Reading his stuff one feels like a citizen of a much larger world than merely that of pro sports. So of course he's GOING to get well, because, too, I MISS HIS EMAILS! Wow, whether it's yakking back and forth about Orwell or Nabokov, or squabbling with him about politics (I told him our Obama would win!), or hearing about playing at Columbia for Lou Little---well, he's the man, our Z. And since, Linda, you're absolutely my favorite photographer bar none, this tough stretch these past months has cut greatly into my culture!
Linda
Your post is making me cry. I feel so small compared to what you are going through, with such grace.
Hugs to you dear Linda
Love
Beth
Linda,
I have always enjoyed your husbands columns. I briefly cared for my Mom during a similar struggle so have a slight understanding of the enormous emotional and physical upheaval this can bring to people's lives. There is a lot of love out here for you both, and a lot of respect and admiration too.
I'm a paraplegic individual who has been a big fan of Z's writing for many years. Nothing I can say can make anything easier, but just know that WHEN Z pulls through this, the care you have shown him will mean the world.
My family and partner had to take care of me for many months after my car accident. It did, and still does, mean the world to me. Stay strong, the both of you.
Prayers for a full recovery, from the northwoods of Minnesota.
Hang in there, Linda. Remember that Paul is still in there somewhere. As someone who has always had a disability, Cerebral Palsy, I have some small idea of Paul's situation. Although my disabilities are not nearly as severe as your dear Paul's, I know what it's like to have to have loved ones and friends help with simple tasks. Even though we hate having to let people help us with embarassing, personal activities, we are grateful for our loved ones and their willingness to help us. I know Paul is glad he has you and loves you.
Have the therapists discussed Augmented Communication Devices or anything like that. I mean, if Steven Hawking can "talk" by merely twitching eye muscles, there must be something for Dr. Z. If they haven't discussed it, bring it up with the therapists.
I wish I had advice for you on the hours and effort you're expending. I'd offer to help, but Illinois to you folks is a hell of a commute. Know that we're all pulling for you both. We love Dr. Z and we miss his writing. I know I miss his football wisdom, stories, and the latest news on you and the tabby cat.
Take care, Flaming Redhead.
Chris Kelly. christopher@crazyjester.com
Dear flamming,
Your posting had me all in tears as I found your blog through Micheal Silver's column. I would not have responded to you if you had'nt ask if anyone was missing the Dr's brilliance. We, a small football community from the province of Quebec, in Canada, really missed the man's writings. I feel it would be useless to rave about his style and Art, but my abundant tears should testify instead.
I am very worried about you and really suggest you seek help. From people to help you with Paul's needs, but also for you as an individual in yourself. Back home we have a very known couple where he is (used to be)a great filmmaker with Alzheimer's disease and she is a singer/poet. She has really brought to the world's attention how it was difficult to be the life companion AND nurse to the loved one and how difficult but yet so important to be able to draw that line in between the two. Her website is in french, but maybe you can have someone to translate it, by any luck : http://www.reseaudesaidants.org. Anyways, I hope there is such a help group near you to maybe attend few of your needs because you diserve it and Paul needs you as you have always been, a presence more than a caregiver. I strongly believe you should not be ashame of such a post as it clearly demonstrates all the love you have for Paul.
I hope that you will be able to surpass these humongous obstacles and that somewhere, at some point, you find a certain form of peace to live in. In the meantime, my thoughts are with you and I can only hope for the best.
tearfully, Charles
Dear Linda,
There are no words. Only tears. We have only met through our blogs - but I felt your intensity and love of life, shared your passion for art and travel and wonderful husbands. And I just wanted you to know my thoughts are with you. My heart breaks for you.
Rosemary
Many thousands of us miss his writing and gentle humor. None in the way you do, of course. I think it is the flipside of this uniqueness that perhaps leads to your sense of loneliness. Most of us are too easily caught up in our own petty travails day-to-day but I think that if opportunities for the community to help are publicized you will find yourself overwhelmed by the response. Know that many of us still check here every week for any news of your progress, silently sharing in the good and the bad.
Anthony....you do visit...every time you drop us a note!
Thanks so much for your encouragement....lol I wish I were a saint. A saint wouldn't complain..a saint would yell.."dump it on...I can take it!!"
Keep us in your thoughts...and keep Baubles warm and happy!
Paul...it's funny you mention the Star Spangle Banner...two friends called the day after the Super Bowl with the time....lol...two different times were recorded!
Paul you have meet Paul...his writing is definitely HIM. Thanks so much for your loyalty!!
Today we took a long drive...Paul arguing at every turn. I think it's a good sign...arguing!
Keep checking for his column...we keep trying!
Anna Maria,
You know how tough it would be if your dear husband couldn't talk to you...I know how close you are.
Have a terrific time on your upcoming trip....when do you leave?
Have a glass of prosecco for us!!
Beth, You've certainly had your share of setbacks and you definitely are a lady of grace...thanks for your cheer!
Oso...it's wonderful knowing that someone is sending grace our way...thanks so much!
J, from the Northwoods of Minn....you definitely know what Paul is going through and I can only say that what I'm dealing with is only a small part of what you have been dealing with and continue to face! I should be sending you cheer. I would say that you are grace personified!
Thanks for thinking of us....and now you will be in my thoughts daily. I'll be thinking of you in the woods...surrounded by critters...hey spring is here and the critters will be roaming.
A big hug to you...your family and PARTNER!!
Chris, I can't tell you what it means to me to receive your note!
Yes...a few of Paul's therapists have talked to him about augmentive Com Devices. Paul is so against it...for now. Not sure why...maybe he feels he will overcome his speech problems? He has never been a lover of computers/electronics. Time will tell!
Thanks again!!
Charles,
Quebec was on our short list of places we wanted to go....who knows...maybe next year?
Your heartfelt message will remain with me for a long time....I will definitely check out the website you mentioned....
Rosemary,
Yes you know what it's like to be close to terrific husband. I am so lucky to have had all the time I've had with Paul. I also am looking forward to more peaceful days...once we get into some type of routine.
Thanks so much...I was shocked when I realized that we hadn't met in person...I feel as if I've known you for years!!
Linda,
I know that Paul said it before me, and probably more eloquently than I ever could, but the answer to "Doesn't anyone miss this man's brilliance?" is a chorus of millions of YES-es. Like so many of Z's readers, I only know you both through his writing, but even through these limited, mono-directional interactions, I felt that I got a glimpse into your lives and relationship, one that i looked forward to every week. I hope and pray that everything will turn out all right for you both.
Stay strong,
Brad
Linda,
We miss.
Everyone who has enjoyed Paul's work over the years misses it. I've read his work since the late 1970s when he popped up in the Sports Illustrated magazines that my father and I shared as part of our passion for sports. 30 years, though it seems like less.
I enjoyed his writing more when he came online, and we could see the Man behind the articles. His love of life, travel, storytelling, food, shared experiance, and of fighting battles that needed fighting even if he was the lone person who saw that it needed to be fought.
Most of all, his love of The Flaming Redhead coming through.
Not many of we readers know Paul personally. We know his just through his writing. But that came across so strongly that it always brought a smile to my face when he'd mention you, or share with us his latest trip or adventure with you.
Or a pang in my heart when I think of how lucky I am, like Paul, to have my own Flaming Redhead lighting up my life. And as big of a fan of Paul over the years as I am.
We understand how hard things are for you, both of us having had family members with difficult disablilties. We can only say that you and Paul are in our thoughts and stay strong.
Best,
John
Yes, I miss Dr. Z too. Not just the Best Football Writer ever, but a damn fine writer, period. Also, I'd visit your blog when he linked to it for a sample of your visual addiction.
Nice of Peter King and Coaches Coughlin and Ryan to throw the benefit dinner. I've never heard of such a thing for a sportswriter.
Shows how much Dr. Z was loved and respected.
I've seen a little of what you're going through when my mother was caring for my slowly dying father (at a point distant from me).
His doctors and therapists sound like my son's teachers. They all give heavy assignments forgetting that the other teachers are also laying it on. But you're the one who's administering the assignments. Just do what you can do. If you make yourself sick, you'll be no good to him -- not to mention yourself!
For what it's worth, we're with you spiritually, FR.
Well, it seems to me you're a huge selfish person, you don't care about what Paul has lost, yo care about what YOU have lost, You are suffering!, You can't sleep!, You have to clean his shit off his ass!, well, I used to read a lot fo Dr. Z's work, and just imagine what a brave, proud man like he feels when he can't even go to take a pee on his own, you may have lost so much, but he is having it way harder than you!, as his wife you're there for him for better or worse, this is worse, so stay with him! or he may bee better off divorced and living with a nurse!
Russ,
Thanks for your kind understanding!
I think that all of the therapists/teachers don't realize that the rest of the therapist/teachers are also handing out 'assignments'....so we're doing the best that we can!
Thanks a million for sending your support...we need it.
Salvador
Kinda stunned at your hatefulness...Z is also shocked.
But it's one for the "looney' column!
Well I can't let this entry and comments end on Salvador's note so I just wanted to stop in and say thank you for the kind words!
And yes, there are plenty of critters up here in my neck of the Northwoods, both wild and the furry creatures I call friends like my horses and dogs. These days I roll alone and manage to stay on top of my small working ranch while enjoying the surrounding nature. After 10 years in Vegas it's a welcome change.
Everything is a matter of perspective, and challenges are made to be overcome. From his writing, I take Z to be a strong, cranky sonofagun and that's the exact attitude needed to get past this. And he will.
Always a fan of you both,
J from the Northwoods
J
Thanks for your support and kind words!!
What a change....Vegas to the woods....the same type of move that I made years ago. When I meet Paul I lived in Phoenix...I was happy to move east. I love the green and the ever changing weather.
Jac, our cat has brought 14 differnet animals into our house...Paul has managed to save almost all of them.
Paul is making great progress...all the hours we've spent doing therapy is paying off.
He can now argue up a storm...it's great...we're laughing all the time.
I'm so proud of him!!
Those of us who know you personally know how completely off base Salvador is. You don't have a selfish bone in your body! Please don't even consider that comment. You're doing an amazing job!
Katherine
I'd read this post just after it went up, but hadn't ventured back.
Linda--You need to continue to be real--when it's good, or when it totally sucks. Seriously.
If you can't on this page bc of trolls like Salvador, find SOMEWHERE! I love how people that leave nasty comments NEVER have a way to link back. They may have a name that goes nowhere, or just stay anonymous. It's like they don't have the well, balls, to allow others to respond. I've been slammed before, too. It hurts. I don't know what makes someone think they have the right to be unkind. PLEASE-try to just mark that one up to someone who is very messed up in their own life.
Those of us that know you and love you know that this is hard for BOTH of you. You are BOTH suffering. Anyone who loves would in this situation. Only someone who didn't care could do what you are doing without being affected by this.
I am proud of you.
You've taken on something no one would wish on an enemy and you are doing it. Plus, you're not just doing the bare minimum just to skate by. You are pouring your life into his. It has to be exhausting and frustrating and lonely. And, as someone who wipes a lot of poop off of others' backsides every day--that sucks. There's nothing pleasant about it. It is necessary, but come on.
Please know that you are not alone. It may feel like it at times, when everyone else is asleep and you're up for the fifth time in the night. Know that you are loved. I wish things were different. I wish that I could do more than mail stuff. I'd come over and sit with you. And hold you and let you cry. I'd sit with Paul and let you take sometime alone.
There is nothing wrong with expressing your TRUE emotions. If you feel you can no longer do that here because of others' nastiness, find somewhere. Make a anonymous blog. Find support for and from other caregivers. Create art. Call me. I'll listen.
And know that all of us here are praying for both of you all the time. I love you.
Katherine and Kimberly,
I can't tell you what it means to me that you understand!
It's amazing how a negative post can really make a person sad...feel more broken down...a very heavy heart.
I am so thankful for your love and support!
L
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