The Renaissance of Ben

Black Bottom Cupcakes

2007-11-18T15:47:00.000-08:00

Jane and I are making these on the anniversary of our sister’s, Barbara Shelnutt Bolender, death as a special remembrance as suggested by our youngest sister, Sarah.

Cooking with Gourmet Grains is one of Jane’s favorite cookbooks, her first edition becoming so tattered, it needed to be replaced. She also gave Barbara a copy and Barbara made these Black Bottom Cupcakes with her own special twist. She replaced a key ingredient with prunes. However, as my sister Sarah and her husband Denny happily devoured the miniature cupcakes, they discovered a frequent need to go to the bathroom. That was an experiment which, as far as we know, was not repeated though she continued to make them to share with family and friends.

More remembrances to follow.

For Barbara:

Black Bottom Cupcakes (from Cooking with Gourmet Grains – Stone- Buhr Milling Company, 6th printing, 1976 page 145)

8 oz. cream cheese, softened
1 egg
1/3 cup sugar
1/8 teaspoon salt
1 6 oz- package chocolate chips
1 ½ cup sifted Stone-Buhr all purpose flour
1 cup sugar
1 teaspoon soda
¼ cup cocoa
½ teaspoon salt
1 cup water
1/3 cup oil
1 Tablespoon vinegar
1 teaspoon vanilla

Place cream cheese, egg, sugar and salt in a bowl. Beat until well and stir in the chocolate chips. Set aside. Beat in all the remaining ingredients until blended. Fill cupcake liners 1/3 full. Top each with a heaping teaspoon of cream cheese mixture. Bake a 350 degrees for 25 to 30 minutes. Makes about 24 cupcakes.

Barbara Shelnutt Bolender - 1954-2006

2006-11-20T15:00:00.000-08:00

Barbara Shelnutt Bolender died peacefully in her sleep early on Saturday, November 18. Beloved wife, mother, sister, daughter and friend—she will be profoundly missed. Born and raised in Wilmington, Delaware, Barbara moved to the Pacific Northwest with her family as a teenager. She studied art at the Cornish School of Art in Seattle and the Evergreen State College in Olympia, graduating in 1975. Barbara had careers as a visual artist, a real-estate broker and a writer.

Barbara loved art, food and good company. Words that come readily to mind in describing her are gracious, funny, lovely, eccentric, progressive, talented. Her home, a gathering place for an eclectic mix of people, was always filled with laughter.

Barbara is survived by her beloved husband Ben Bolender, son Abraham Trabka, mother Martha Shelnutt; sisters Ann Barry, Jane Button and Sarah Plasha; nieces and nephews Alexandra & Christopher Ambrose, Brad & Abby Plasha.

In March 2006, when Ben suffered a heart attack and consequent brain injury, Barbara’s unconditional loving support and advocacy for Ben became an inspiration to all who knew her. She was in the process of writing “Silver Lining,” a book about her experience with Ben during this time. Barbara recently spoke of gratitude for the time she was having with Ben now, which she knew could be limited because of his condition. She said she was happy and without regrets.

A memorial service will held at 10AM Wednesday, November 22, 2006, at Unity Church of Olympia, 1335 Fern St. SW, Olympia, WA 98502. In lieu of flowers the family suggests a donation to Brain Injury Association of Washington 800 Jefferson Street, Ste 600, Seattle, WA 98104 206-388-0900.

At a later date there will be a celebration with food, music and fellowship held from 5 to 9PM Saturday, December 2, 2006 at Lacey Community Church, 4501-19th Ave. SE, Lacey, WA 98503.

It Takes a Village

2006-10-27T14:11:00.000-07:00

October 27, 2006 Friday
My goal this month was to figure out what I could do to generate some income. I have about 15 good solid ideas, but I’ve realized that I don’t want to be away from Ben much, whatever I do can’t stress me out and I’m not as concerned about making big bucks right now as I am in spending quality time with my husband.
So many people have suggested that I do something like publish the blog. So after talking with my friend Vicki and then with Cappy, I’ve decided to put something together and self-publish a little book using the blog that I already wrote which was raw and un-edited- like my diary- and then go back and reflect on where I’m at now that I’ve got 7 months into this rehab deal. There is hardly anything out there in the book world dealing with the anoxic brain injury- there are many books dealing with head injury like being in a car wreck.
My sister Jane is going to help me put it up on a website- that way people can google anoxic brain injury and find my website and order the book on-line.
My goal is to have my book ready to go by December. So it’s not going to be my literary masterpiece- just a shoot from the hip, reflection of what I’m learning about the process of recovery.
Also there is so much that didn’t get said in the blog- so many important people that I didn’t thank- this will give me the opportunity to do that. I’m finding it therapeutic to go back and read what I wrote already, as well as writing about how I feel now. I think I’m going to include a section on what I have learned so far.
I’d like to use real names with your permission and possibly some photos as they appeared on the blog- again only with your permission of course. If for whatever reasons you don’t want your name or your photo, just let me know. If you want, you can chose your own alias.
I’m also going to need someone to write an introduction or preface- anyone interested? And some people who will be willing to read the galley and write a blurb I can put on the back cover. And so many of you emailed me comments on the blog that didn‘t get posted- I was hoping that some of you would like to write some of your own reflections and have them included in the book. (Like John’s response to Ben impersonating a general was hilarious- but I don‘t think anyone got to read it.) If so, I’d need your writing by November 20th so that it can be included in the book.
It’s taken a village for sure, I could not have not done this alone. And I will need your help to make this actually come together. Thanks everyone. You’ll be hearing from me- about the permission deal and about the possibility of writing something for the book. Love, B

Putting it in perspective

2006-10-18T14:05:00.000-07:00

October 18th, 2006
Went last night to my first in a series of Tuesday night classes for un-paid caregivers offered by my favorite geriatric social worker, David Robinson. There were about 25 people there and we went around the table telling our stories. Man oh man, it was enlightening. So many people there were in desperate situations. The worst was this couple who had just remarried and now had his mother with dementia and his disabled sister staying in a hotel room in town- they had just gotten back from Florida where his mom and sister had been abandoned by his brother and his wife when they got a divorce. So many sad stories. So much family dysfunction. So many unhappy marriages. My heart really went out to the spouses who were in unhappy relationships with their spouses and their families before their crises. I can’t imagine how stressful it would be if Ben was mean to me. Gosh we’re so lucky. Ben truly appreciates me and recognizes what I am doing for him. He’s never been angry except when I wouldn’t let him drive or smoke. Now he’s smoking a bit and he seems to understand why he can’t drive, we’ve had no arguments, for which I am truly thankful. I HATE arguing.
I’m still working on massive paperwork. Right now working on the VA stuff- since Ben was in the army during the Vietnam era, he qualifies for benefits now he is disabled. I’m not sure what we’ll get, but I am excited to find out. It was a bit difficult for me to fill out the paperwork that they gave me back in March since Ben was obviously no help. He used to think he was still in the army all the time. Usually he was a bird colonel or a general of course. Our case manager is wonderful and he loves the stories of Ben’s adventures as the general and almost a spy.
I’m also applying to get our property taxes frozen but they want so much paperwork it’s absurd and the assessor’s office so far have been the least helpful agency to deal with.
I’ve been trying to get free or cheap legal advice but keep hitting dead ends. I just bought my first month of pre-paid legal. It’s only $17 a month and supposedly we can get everything we need done through them like our wills and durable power of attorney, plus have all the free phone consultation we need. They’ll write letters for us etc. I’m anxious to see how we like them. Will keep you posted but I don’t see how we can lose. The elder law attorney who everyone recommended charges $200 an hour and no free consultation. We’d be into it for a couple of grand in no time.
Trying to do our 2005 taxes continues to be challenging to say the least. My stress level rises with the T word anyway, and now we are in such a mess with moving stuff around in Ben’s office when we had to sleep there for awhile etc. Fortunately our accountant Kevin has a good sense of humor and knows us. Kevin says Ben’s his most colorful client and claims that Ben sent three of the IRS auditors into therapy prior to this. He says he’d love to see them trying to audit Ben NOW. I’ve GOT to figure out how to get that scene into a movie- what a riot!
I’m going to take the train up to see my sister Jane in Burlington next weekend. It’s hard to get away, but I know it’s good for me. Ben’s well taken care of here. That’s another thing to be grateful for- last night I heard horror stories of caregivers. We are fortunate to have so many friends- it really makes a difference to know the person who is coming into your home. We have really lucked out in the caregiving department.
Ben continues to improve. He’s been sleeping a lot lately which I see as a good sign- I guess that’s the time his brain can heal the most- like plants growing when it’s dark. He’s doing difficult (4 digit) math problems right now and looking at the atlas- we can’t find our world globe. I just ordered him a large print world atlas on half.com. I need the large print too as last week I turned officially OLD- I can no longer read the phone book without reading glasses. Dang!
My little sister Sarah and my niece Abby are coming from New Jersey for a visit in November so we are looking forward to that. So all in all, life is pretty good- we keep plugging along and it seems to be uphill. Knock on wood.

PEACE and SLEEP

2006-10-13T20:37:00.000-07:00

October 13, 2006
It feels like ages since I’ve blogged- for which I have received many complaints from my friends. Ben’s upstairs sleeping- he took a nap at 4:00 and now it’s 8:00 PM and I am debating waking him up or letting him sleep. I suppose one of the reasons you haven’t heard much from me is there hasn’t been too many episodic adventures around here in a while but even as write that …
So anyway, we’re settling into more of a routine around here- thank goodness to the COPES caregivers, what we call Ben’s ‘assistants.’ Now we’ve got 2 primary and 2 back-up assistants- they all bring something new to the table and they are all excellent. We are truly blessed. I’m adjusting to having the help and trying to learn to pace myself so I don’t burn out.
Even though Ben’s on the upward swing, we’ve still got a long way to go. And it’s hitting me that now I am going to have to be the one to keep our little family afloat. But I have to figure out something that isn’t stressful and doesn’t take me away from Ben much. That pretty much rules out real estate for now, but maybe I’ll get my license just in case. But I’ve had the real estate class on my computer for how long? A 60-hour class and I’ve only done 2 hours. And I can’t even pass the first lesson of a class I used to teach. So, what does that tell me? Pick another direction perhaps.
Writing is what I truly want to do, but it’s not practical for making $$$$ quick as far as selling a novel goes. I’m starting to query some magazines with ideas for articles. I’ve written a decent query letter, I think. But now I have to learn how to type a business letter- all the stuff I always had a secretary do- I am hopelessly inept at figuring out how to put the address into WORKS so it’s saved. Eeeeeeekkkkk!
But the good thing is I got out a whole TON of applications and paperwork for all of Ben’s stuff and programs we can apply for out this week- like the City of Olympia has a program for repairing your house with no interest and we wouldn’t have to pay it off till we sell. So we’ll see what becomes of all that. You can’t win a the lottery unless you buy a ticket, right?
I’m still moving the furniture around, trying to figure out what’s the best set-up for our new lifestyle. Now we’ve got a dining room table so I’m happy.
We finally named little kitty- Brenda thought of it- Black Bart- he was a stagecoach robber which fits his personality to a tee. Since Bogie came home, Black Bart clearly is the Alpha-Kitty around here. At first, Bogie was pretty irritated we’d replaced him. But now that Bogie has put some weight back on and the two kitties wrestle all day. Bogie has to have his food away from Blackie (Ben’s name for him), Bones eats Bart’s food. And Black Bart will only eat dog food. So there you have it.
Ben continues to make incredible progress- he’s truly amazing. He’s still physically a bit wobbly but cognitively he’s doing much better. His speech therapist who works mainly on his memory was shocked at how much better he scored on her tests since his seizures in August. His attention is improving which is a big part of getting his memory back. He’s often remembering stuff like what he did yesterday and what he had for breakfast- even that his friends came to visit last week so that’s really improving. He’s sleeping too. Yippee! Plus, I can reason with him- like now when he asks if he can drive, he actually understands when I explain and he even laughs and agrees. He continues to be laid-back and happy. He likes all 4 of his assistants and doesn’t even question what they are here for- he’s so used to having an ’assistant.’ Today he was looking up stuff on the Metzger Map and on the net already thinking about buying property. He thinks we are rich, so now rather than try to explain otherwise, I just go with it. I tell him he’s been a good provider and given me everything I’ve ever wanted and it’s the truth.

2006-09-18T19:27:00.000-07:00

September 18, 2006
Sorry I haven’t blogged lately- my computer has been having problems, which Tom fixed! Yeah- so I’m back on-line. What would we do without kids?
First of all, thank you so much to all the people who helped us a couple of weekends ago. John Paul and Janet, who showed up BOTH weekends, Paula, her husband Joe and daughter Clare, Ellington, Darryl, Cheryl, Sammy, Theresa, Maureen, Stephanie, Claudia, Frank, the 2 Shelly’s, Perrin and our neighbor June. Man, oh man, we got a lot done. Thank you from the bottom of my heart. Our lives would look considerably different without all of you. I shudder to think what it would be like if we didn’t have so many wonderful loving friends and family members. We are truly blessed!
Can you believe I just got back from a weekend at Seaside, Oregon? Went with my friend Jennifer- it was good to get away but it was hard to leave my sweetie. Ben was so happy, and so was I, when I returned home. He was well taken care of by his wonderful caregivers- we couldn’t be luckier to have such great help!
Ben started back to rehab last week- his therapists noticed a change (improvement) in his cognitive abilities- he’s still got a ways to go to get back to where he was physically before he had the seizures. His long-term memory still comes and goes but his short-term memory seems to be improving although sometimes when we wake up in the morning he still asks, “Are you Barb?” When I assure him that I am in fact Barb, he answers with, “Phew.”
I’m almost afraid to say it, but we have had no ‘episodes’ since Ben got home this time. Again, I am almost afraid to say it, but I think his meds are finally leveled out. He’s much calmer and more able to understand when I explain something to him. He no longer shakes and trembles. He’s smoking a little bit- something I had a hard time accepting but it truly IS a quality of life issue and for sure it has improved Ben’s life for right now- and mine too since it was the thing we argued about the most and it set off several ‘episodes’.
Our cat Bogie still hadn’t come back after 3 weeks so I figured if we got a new kitten Bogie would come home. Sure enough, we adopted a 5 month-old kitten, who had already been fixed, from the pound. 2 days after we got little kitty, big kitty came pounding at the door and crying to be let in. Bogie was half-starved, nothing but sinew bones. He must have been locked in someone’s garage or something. But he’s eating like a maniac and putting some weight back on. In the mean time, little kitty wants nothing more than to play with big kitty who wants nothing to do with him. Poor Bones is beside himself with coveting the canned cat food we’ve been feeding Bogie. He stands in front of the cloths dryer where Bogie’s food sits and whines all day. Oh joy!
It was good to have some time to think about what I can do to bring in some money. I’ve got about 10 different ideas besides getting my book finished. I’m going to make time each week to get out some proposals and see who bites. I’ve got a few ideas for non-fiction books and for magazine articles. Also I’ll have time to finish my real estate license now that we have more help. So onward and upward. It will be interesting to see what happens next.
Hope to see all you locals downtown tomorrow night (Tuesday Set 19th) for Charlie William’s election party- he’s running for superior court judge. It’s 7:30-10:00 at Bill Hillman and Tom Anderson’s new studio, Washington Arts, at 117 N Washington next to Otto’s. If you are in Lewis County make sure to vote for Ben’s brother Mark who’s running for county commissioner. That’s all for now. Love, B

12 hours a day!

2006-08-31T14:16:00.000-07:00

August 31, 2006 Good news! We got the 12 hours of caregiving a day for Ben! Our lives are about to change dramatically. I’m even going to be able to get away for a night or two! Wow! We are so fortunate!
Ben’s improving- still a bit wobbly but he’s been sleeping well. The occasional mini-cigar and beer seem to be doing the trick. He actually seems to be understanding things he didn’t before- such as why he can’t drive yet. So life is getting better.
We had a terrific turnout last weekend for the work party- we got almost everything crossed off the list. Thanks to John Paul and Janet who showed up and worked like slaves both days! Many thanks to George and Sherry and Charlie and Cappy who have been a tremendous help- don’t forget to vote for Charlie Williams for superior court judge in the primary. Many thanks to Maize’s daughter and her friend Chelsea, Ben’s daughter Cyndi and her husband Doug, Lindsey, Ibbie, Angie, Chris, Cecelia, Kitty, Claudia, Perrin, Jane, Lenny and Shelly- I hope I didn’t forget anyone- if I did please know I am not quite playing with a full deck.
We had a visit from the city of Olympia building department on Monday- seems Ben failed to take out a building permit- so Ralph, who used to be building inspector, is negotiating for us. Consequently, I’m not sure what all we can do on the new structure this weekend but there’s plenty of other stuff to do- hope to see you this Saturday or Sunday starting at noon- I’ll have lunch for you.
Again, thanks for your prayers and positive energy. It’s working!

open-mindedness

2006-08-25T14:39:00.000-07:00

August 25, 2006 Ben’s home! He’s doing great! I’m doing great! I was upset that he started bumming cigarettes at the Lodge- apparently he has RIGHTS- imagine that. After talking to his doctors it’s far more dangerous for his heart for him to get upset and there is something in the nicotine that helps the brain to relax. When he freaked out one night at the Lodge, I actually suggested that they give him a cigarette and it worked to calm him right down. So, once again, I’ve had to open up my heart to things I was TOTALLY against. Never say never.
I’m busy getting ready for the work party tomorrow- our caregiver (who we call Ben’s assistant) just took him downtown for a bubble tea and then to the library. I’m so happy he’s home. I feel so much more at peace knowing he’s being looked after one on one. Bones is much happier too- however I haven’t seen anything of our kitty Bogie in the last couple of days- hope he makes it back but there’s a big rangy coyote living in the ravine…

Creative Gin Rummy

2006-08-23T18:23:00.000-07:00

August 23, 2006 Both Ben’s doctors said he could come home- I am trying to get stuff set up here so he can. I can’t wait! It’s so dang heartbreaking to be apart but Ben needed to get more stable before he could come back here safely. We went to his doctor this morning, then our friends Gordon and Judy came down from Canada for a visit- we played an interesting and creative game of progressive rummy with Ben and his 3 buddies, the most coherent fellows at the Lodge. Then we went to O’Blarney’s and Gordon and Ben shot some pool so all in all it was a good day. I slept soundly last night without a sleeping pill so life is getting back to our version of normal. Thank you to all the people who have helped us through this latest crises- we couldn’t do it without you!

Exhaustion

2006-08-20T18:20:00.000-07:00

August 19, 2006
I was talking to my friend Ivy and she said, “My dad put my mother in a nursing home because he was too exhausted to take care of her and then he didn’t rest- he just spent all day visiting her.” That’s ME. So I am trying to use this time as a respite, catch up on my sleep, take care of myself, and try to take care of the million business things I need to take care of.
I picked Ben up and took him to Ditty and Fay’s for some terrific BBQ today and he did okay but he’s pretty darn wobbly- Ditty had to help him back to the car. Ben still asks if he can drive but I just say, “Oh, you know, I feel like driving today.” He accepts that answer so much better than the long explanation.
When we got back to the Lodge, Ben of course wondered why we were going there instead of home to take a nap. I just said, “Oh, it’s kind of a hotel- just for a couple of days.” He was fine with my explanation.
Now that Ben is safe, it’s starting to hit me. I feel slightly in shock and numb and full of fear- and I’ve cried more in the last week then I ever have in my fifty one years of life. But I also feel hopeful that Ben can and will get home soon and continue to get better. I think it’s finally hitting me that I’m grieving for the way things used to be. They will never be the same.

Got ladders?

2006-08-19T20:51:00.000-07:00

WORK PARTY

August 26th &27th

September 2nd & 3rd

Starting at noon till...

Ben & Barb's @527 17th Ave SE

The goal is to 'button down' down Ben's half-finished addition before the rains come- bring tools

Plus move around some stuff, sort books, remodel the railing, computer and cell phone tasks, and sort papers etc.

I'll provide the food

Tell your friends

Thanks.

montybarb@hotmail.com

pleasantly confused

2006-08-18T15:24:00.000-07:00

August 18, 2006 Ben’s safely checked into a secure lock-down facility- Roo-Lan Lodge at 1524 Carpenter Road directly across the street from the nursing home which was not ANYWHERE NEAR secure enough for someone who can start a car without a key, drive to Camp Murray and successfully impersonate a General. Thank goodness Nancy Mikkelsen came with us yesterday because I was a basket case and had been crying non-stop for 2 days. As soon as she got there I was fine and Ben understood what we were doing and why.
Ben can have visitors anytime and you can call him at 360-455-9159. I’m heading back over to see him but I spent all morning on the phone trying to get Ben the help he needs- everywhere I turn everyone is blown away by our story and they are bending the rules- called ETR (exception to the rule) to try and help us. Everyone is amazed at how well Ben is progressing with what he had happen- he is such an exceptional person and everyone who has worked with him loves him. His chart describes him over and over as ‘pleasantly confused’. Also ‘extremely personable and affable. Good sense of humor, charming, smart etc.’ The gal that checked us in last night was from NYC and she had worked with folks with the same kind of brain injury and she could not believe Ben’s recovery.
The plan is to keep him at the Lodge- which is actually the Alzheimer’s unit (he’s the brightest bulb on the Christmas tree)- until we can get re-accessed for care giving hours- the maximum we could get is 12 hours a day- we’ll know how many hours we qualify for sometime next week and then hopefully I can bring him home.
In a way I am glad this happened because I would never have known that I wasn’t getting enough hours- truly I was just grateful to have any help at all- but Ben requires 24/7 care. The nurses and social workers have told me I should apply for Social Security since I haven’t been able to work in 10 years due to my health problems. I didn’t want to do it, but now I am at least going to apply and see what happens. Thanks again for all the phone calls and offers of help and especially the prayers and positive loving energy you are sending our way- it’s helping. Like my sister Jane says, our feet are planted firmly in mid-air. But I feel like we are in a state of grace and truly blessed.

Intermittenly challenging

2006-08-15T22:26:00.000-07:00

August 15, 2006 I almost feel guilty leaving Ben with the night nurses. Almost. They describe Ben as 'intermittedly challenging.' Last night the nurses called me 3 times on our landline. Thank God I had unplugged the house phone. I was sound asleep when my cell phone buzzed me awake at noon. The nurse had located my cell phone number and she begged me to talk to Ben on the phone. Seems the nurses had to call security because my husband, Houdini, kept attempting to escape on the elevator. At home when he gets up one of the five times each night, 90% of the time he thinks he’s late for an appointment, or he need to go put up signs, or measure some property. This morning he was looking for me. That’s what he was doing at the nursing home when he kept escaping.
I’ve learned so much these last almost 5 months- things I’d never have learned had this not happened. What I learned last night is don’t let your dog out after he’s overdosed on thyroid- Bones didn’t return until 2:30 last night- he was wired I’m sure! Of course I feel guilty not paying any attention to my poor thyroid overloaded hound. He looked so pathetic when I got home tonight. And of course I am looking for signs that he’s ill and not acting right- but he wasn’t acting right before he ate the thyroid- he is always traumatized for days even weeks after Ben is taken off by the medics.
Went to a caregivers support group tonight with my fried Sarah and it was helpful and actually comforting. I think all this education about our new situation is slowly sinking in- I’ve been too much in crises mode so I haven’t had time to really learn enough about what’s happening with Ben’s deal, what ever you want to call it, his disease, his traumatic brain injury, the fact that he’s got a dicey heart and all the stuff that goes along with dementia. Looks like they are going to keep him for a bit longer- YEAH!!! Maybe even place him in the intensive in-patient rehab for a week or two. I HOPE. Even Dr. Mc Dowell wrote a letter to our social worker explaining whey we needed more ours of care giving if Ben stays at home. And I am trying to listen with my head and not my heart when all the social workers and doctors keep suggesting Ben be placed in a home. The thought just upsets me so I can’t even hear that they are saying, ‘for a while- not forever.’ Of course I want what’s best for Ben. And what’s best for Ben may hurt like hell.

Prayers for Bones & Ben

2006-08-14T22:42:00.000-07:00

August 14, 2006 It’s 10:30 and I just got home from the hospital an hour ago- I walked in, threw the mail and 6 months worth of my thyroid medication on the chair. I was returning phone calls when I noticed Bones happily eating something – which turned out to be my thyroid medication! I quickly called the emergency vet- they transferred me to the national pet poison control hotline. Finally, after two doses of hydrogen peroxide, I got Bones to throw up! I’ve never been so happy to clean up barf in my whole life! As he’s throwing up I’m going, “Good boy, good dog.” Bones is looking at me like ‘Have you lost your marbles.’ I think I have.
They are keeping Ben another couple of nights. His doctor wants to get to the bottom of this. The nurses there are giving me a reality check telling me I MUST have more help- they can see what a handful Ben is- he takes all my attention- it’s like a little kid you can’t take your eyes off for a minute. The social worker is helping me get more hours of care giving. So that’s good. But man, I could use a break from all this DRAMA! I’m very happy my dog threw up- we’ll know in a couple of days if it’s going to have any long term affect. And hopefully we’ll get to the bottom of what’s going on with Ben. Thanks for your prayers and support. Oh yeah, Ben’s in room 1016 at St. Pete’s- they all remember us- and are amazed at Ben’s progress- and all are worried about me losing my marbles! Love, B

learning curve

2006-08-14T00:13:00.000-07:00

August 14, 2006
It’s just after midnight and I just got home from another fun trip to the ER with the medics. They had to carry Ben from upstairs again- quite a feat on our treacherous stairs. Ben had seizures for 4 minutes- it was terrifying and I thought for sure this time he was a goner. But by the time I got to the ER he was doing much better- that was about 6:30. About 9:30 he started having more seizures and they admitted him- he’s on the 10th floor in the same room we were in May 10th when he had his stents put in his heart valves. I’m exhausted, but of course happy Ben has made it yet another day. Guess I have to learn about seizures, oh joy! I was writing the part below right before this happened…

Finally, someone in the social services part actually helped me! Up until now I’ve had absolutely no practical advice. On Thursday I spent an hour and a half with David, a wonderful social worker that specializes in dementia. Until Thursday I didn’t even know that’s what Ben has- all brain injuries fall under the category of dementia. David explained a lot of stuff to me that Ben’s doctors, therapists, nurses and the Medicare folks had not explained before- such as what in the hell am I supposed to do when Ben wants to do something that I don’t want him to do. David explained that it’s pointless to argue or give Ben facts. It’s much better to distract. Arguing rocks Ben’s sense of security and safety. When Ben hears fear in my voice, he reacts with his own fear- bottom line is Ben thinks I’m going to abandon him. Ben cannot retain facts or logic. So to try and explain the whole situation to him is only more frustrating for both of us. It’s already worked. Ben wanted to go up to the Frog Pond, our little neighborhood store and buy a cigar. Instead of explaining why it’s not a good idea, I agreed, but I said, “Let’s go find your wallet.” Then, “Do you need to go to the bathroom?” So by the time we’d done these 2 simple tasks, Ben had forgotten what he wanted to do. So instead we went to the Japanese Bon Odori festival and he never mentioned smoking again.
Basically what David said was that if Ben smoked a cigar and it killed him, well Ben wasn’t getting out of this world alive. And at least he’d died doing what he wanted- not that I should encourage him to smoke, but I have been terrified he was going to start again.
Instead of explaining why Ben couldn’t drive, I said, “Just because,” when he asked. Ben totally accepted my answer, much more than if I went into a lengthy explanation of his condition.
David said that Ben needs a safe environment, and a routine so he knows what to expect. Most of Ben’s anxiety comes from not understanding or knowing what comes next and what’s going to happen next. It makes sense because Ben is no longer in total control of what comes next nor does he have the understanding of what’s going on in his body. Nobody, including Ben’s doctors, have the understanding.
David also told me that I should be getting 2 or 3 times the hours for our caregiver. We went through another assessment to see what hours we can qualify for through the COPES program. David said we were really desperate and it was important to convey that to our social worker.
David gave me a really good reality check, not the one I wanted to hear- our future does not look rosey. It doesn’t mean I have to give up hope, but I do need to prepare myself. I haven’t wanted to read any statistics on this thing because they are so frickin’ dismal and so far Ben has defied all odds and is doing so much better than anyone in the medical field ever predicted. I have to remember that the day the doctors told me that Ben was going to be a vegetable and never come out of it was the day he said, “I love you too, Barb.” And told his daughter Cheryl when she asked him if she was his favorite child, Ben cracked a big smile and said, “Absolutely.” I mean, a four-syllable word right out of a coma? A few hours after all the doctors in Critical Care said he was a goner and I’m have to be looking at ‘making decisions’ and ‘quality of life.’ Issues. So what do they know for sure if Ben is going to get better? I’ve said all along that Ben is wired differently than anyone I know and he’s going to do it in his own way, in his own time. But talking to David has helped my stress level enormously. Giving Ben the simple answer of “Just because,” is so less anxiety producing than the long answer, which only freaks me out, Ben startes picking up on my anxiety, and away we go. I really want to go to my cousin William’s birthday party in Tahoe in September but it wouldn’t be good at this point to upset his routine and disorient him by staying at a hotel. It also means that I shouldn’t leave Ben a friend’s houses at least for now, unless it’s been part of his routine. Playing pool seems to be one activity that doesn’t confuse him. But using things like notes from his doctor, which requires him to use logic, isn’t going to work.

always something!

2006-08-04T16:44:00.000-07:00

August 4, 2006 We made another unscheduled stop at good old St. Pete’s Emergency Room on Wednesday. This time Ben has a Sheriff escort him. Ben’s fine, everything’s okay. Just a little excitement with me and his daughter (who just had her appendix out) chasing after Ben, following him through strange people’s yards, not knowing what streets we were on, all while talking on the cell phone to the dispatcher. I must say, the Sheriff’s department handled the situation with a great deal of compassion and finesse. Again, we seemed to be blessed that all of Ben’s adventures and misadventures have had happy endings. Thank goodness for that.
We were put in a room called the elopement risk area- it truly was a white padded room. The other 2 gentlemen back there were much more interesting- one was Michael Jackson’s manager and he had a private jet. The other was Mick Jagger and he gave us a non-stop concert.
Our caregiver is back from vacation and that’s another blessing. I’m searching for solutions and help with how to handle situations when Ben gets upset. It seems that the 2 things that trigger him are wanting to drive and wanting to smoke. Anyone know a good hynoptherapist?

sweet as a lamb

2006-07-31T17:38:00.000-07:00

July 31, 2006 Quickly- everyone’s saying they aren’t being notified when there’s a new blog- that’s because my sister Ann just got a full-time job (she was in-between when she set up the blog) so I doubt she’ll have time to post when new ones are coming out. If you are reading this, please pass this info on to anyone you know that has been following the blog.
I’m afraid that my postings about Ben’s shenanigans have made some of you apprehensive about spending time with Ben- be assured that he’s not going to run off if you go for a walk or take him to play pool- he mainly gets confused in the middle of the night like last night we got up every hour to Ben getting dressed to go to work. He now has a note from his doctor that reminds him he can’t drive yet, so all you have to do is ask him to take out his wallet and he’ll remember.
Thanks to all the brave souls who have helped me while our caregiver is gone for the week- she gets back on Thursday- can’t wait!
Ben continues to amaze me, and I am amazing myself- I am dealing with and taking care of things I never thought I could- thanks for all your help and positive thoughts and energy and prayers- keep them coming- we’ve still got a long way to go.

Never say never

2006-07-23T14:55:00.000-07:00

July 23, 2006 It’s sweltering hot here for us spoiled Pacific Northwesterners- been over 100, but only 30% humidity, unlike the east coast. Our caregiver is going camping this week and she would like to stay even longer if I can find someone to spill me off a bit. Anyone available to look after Ben the afternoon/early evening of Wednesday 7/26, Thursday 7/27 or Friday 7/28, anytime on Saturday 7/29 or Sunday 7/30, and in the afternoon/early evening of Monday 7/31, Tuesday 8/1 or Wednesday 8/2? Your place or mine, or… Ben loves taking walks, playing checkers and Yahtzee, playing pool and he still wants to go hit golf balls.
We seem to be getting into a routine around here- still in rehab, although we are taking a couple of months off of occupational therapy but he’ll continue with speech therapy. We take yoga at the Y. This week we start cardio rehab at St. Pete’s- I think the exercise will help Ben sleep better. Nighttime is the main time we have problems as far as Ben becoming disoriented and confused- they call it ‘sundowners syndrome’- and it’s common with Alzheimer’s and other mind-effecting diseases. But luckily it really doesn’t happen until after dark- which is after 10 here in the summer. The trick is getting to bed early enough, but not too early. We plan to walk over to the Capitol Plaza and watch the fireworks tonight, which begin at 10:15, but we’ll see how it goes.
From what the doctors are telling me, this is going to be a long haul. Right now he’s making progress and that’s what they want to see- but they keep warning me that there will come a time when he levels off. They say most of his brain injury is what they would term ‘moderate traumatic brain injury’ all except his memory loss which they say is severe. Memory is one of those things that doesn’t usually repair itself- although Ben’s memory is improving right now- but when it levels off we will be learning new tools to help him compensate for his memory loss- things like lists and a daytimer. I got him a watch with the date etc. so that helps.
Speaking of watch- I ordered Ben’s new watch band was too big and needed a few links removed. We went to Talcott’s and the new owner, who Ben did some breal este business with, recommended McKenzies who does jewelry repair. Ben walked into Mc Kenzies and said, “Do you know who we are?” Mc Kenzy looked taken aback and said, “No, should I?” Ben said, “We’re the Bolenders, the oldest family in Thurston County. We’ve been here since 1906. No, 1896. No, 1776.” It’s always so difficult to know what to do in those situations because if I correct him then we usually start arguing. I said, “I think it was 1896, hun.” Ben says, “Well, you ought to get to know us. We just got back from a trip around the world and we are very big jewelry customers.” This line of talk continued on, me trying not to get into an argument. Finally when Mc Kenzie was finished, I asked him how much did we owe. He thought for a minute and said, “How does ten bucks sound?” Ben answered, “A hundred’s more like it!” I had to politely tell Ben a hundred was more than what the watch cost. Ben continues to be blissfully unaware that we are not millionaires, which is fine with me. He doesn’t need to be worrying about money.
Speaking of worrying about money, I think I’m going to get my real estate license. I deliberately let it go a few years back, along with my real estate school credentials. Dang it, I have to take a 60 clock hour class- the same class I used to teach- but now I can take it on-line. There’s no other business I could go into that I would have the flexibility and make as much money. I know I swore I’d never go back to real estate that I was determined to be writer, but I’m writing about the real estate industry so I can call it ‘research.’ Never say never.

grandkids

2006-07-17T10:03:00.000-07:00

Ben loving his darling grandchildren- Tabitha, Marissa and Perry

Desperados

2006-07-17T10:01:00.000-07:00

Ben and his brothers and sisters and mom for brother Mark's 50th birthday

YEEHAW

2006-07-17T09:58:00.000-07:00

Ben and his 5 sisters, mom and granddaughter Marissa down at Mark's ranch

AAA

2006-07-15T17:42:00.000-07:00

Never a dull moment around here. We woke up late, after getting up and down all night with Ben insisting he had to go to work- he’s talking about buying another real estate franchise- yeah right! He wanted to go out to breakfast for some strange reason- something we hardly ever do except when traveling- when I asked him where he said, “Denny’s of course.” Of course- although in 21 years as far as I remember we’ve never gone to Denny’s for anything. So I took him to Caitlin’s in Tumwater, not knowing where a Denny’s is anymore. He ordered this huge breakfast and kept adding everything the waitress suggested. When it took forever to get our meal, he asked our waitress, “What are you guys doing? Catching the goat?” Luckily our waitress was as out of it as we were so half the things Ben said to her went over her head.
Afterwards we took Bones down to Pioneer Park on the river. I thought I was being so clever by locking my purse, cell phone, keys in the trunk and carrying the key to the car in my pocket- the one I had confiscated from Ben last week when he was trying to race off in the Acura. When we got back to the car I discovered that I had the key to the old Honda in my pocket instead, which did not unlock the Acura. So there we were- Ben was tired from the walk and wanted to go home.
Suddenly the clouds shifted and it was hot. So we started to walk home, all the way I’m thinking logistically how am I going to drive back two cars- all morning Ben had been fighting me about driving again- it’s a constant battle- but if I follow him, what if he goes someplace other than where we are going? He can’t follow me for obvious reasons. . Then I had the brilliant idea of stopping in at the Y on Yelm Highway where they let us make a phone call to AAA, with Bones tied up outside howling and carrying on, Ben arguing with me that we could just call a cab or one of our many employees. This was my 4th, and last free call to AAA since Ben’s heart attack. It took us a half an hour to hike back to the park- mainly because Ben kept crossing Henderson, back and forth thinking he was building the new houses and wanting to develop the wetlands into a new subdivision. Just as we got back to the car, the kid who breaks into cars for a living pulled up in his souped-up hotrod. Of course, Ben is making all kinds of suggestions to this kid, who was trying to figure out what the heck was going on and what we were all about. But sure enough, he got the hummer unlocked and we took off for safer ground – home!

down by the riverside

2006-07-15T17:40:00.000-07:00

That's all of us down at the base of the falls on the Deschutes

Ben & Cynthia

2006-07-15T17:36:00.000-07:00

We had a lovely picnic with Cyndi, Ben's oldest daughter. That's her husband Doug in the background- he's the one who spotted Ben coming out of Cash & Carry when he wandered off to Lacey last week- we are truly grateful for Doug's sharp eyes!

NEWS FROM THE FRONT

2006-07-10T19:06:00.000-07:00

Another fun-filled and exciting day with the General started off this morning with the state patrol calling at 5:30 this morning to inform the General that his 1984 Celica was towed off the freeway and we could find it at Gene’s Towing in Tacoma. Yesterday we spent the afternoon up by Camp Murray cruising for the General’s abandoned vehicle- still don’t know how we missed the Supra as we passed by it a number of times- oh well, perhaps Ben’s condition is contagious?
Anyhoo, we bailed the car out, to the tune of almost 200 bucks! We brought a gas can because Ben told the guards at Camp Murray that he had run out of fuel. But when I fired up the Supra it made a wretched metal on metal clang and the tow truck/mechanic guy waved his arms and yelled for me to turn the engine off, immediately if not sooner. Seems we blew or threw a rod or some such thing- anyway it’s a 99% chance that the car is toast, which was what I was afraid of since Ben left a big old oil puddle in the driveway when he raced off leaving Cecelia and me with our mouths hanging open. So, lucky us, we spent all afternoon at the tow truck place in Tacoma, amusing ourselves, waiting for AAA. Like I always say, there’s nothing more fun than a day at the lovely tow truck yard- particularly on Pacific S in Tacoma!
Gene’s Towing might have been easier to take had we not already been awake when the state patrol called at the crack of dawn. Ben woke up from a dream in the middle of the night, convinced that we must drive to Seattle immediately to find some hotel, he didn’t know where, and rescue someone, he didn’t know who, who was being held hostage by someone, he didn’t know who. Sleep-deprived and irritable after failing to convince him he was dreaming (his doctor thinks we sleepwalked the morning he took off on Monday) Finally, when it got late enough to call someone, Tom talked to his dad and convinced Ben that it was going to be okay, that he would call Seattle police and take care of it. Ben was just fine after that.
George suggested that charitable organizations sometimes accept old cars for donations- in the near future I may be asking if you know of any...
Thanks for all the info and help you’ve all been sending me- I appreciate it all and I am trying to zero in on the solution but I have a feeling as soon I figure out what we need that we are going to be past whatever is going on with Ben right now and we’ll be on to a new set of problems. One thing I am learning at least for right now is don’t try to argue with him- just go with what he’s saying… oh no!