12 hours a day!

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

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

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

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?

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

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

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

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

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!

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?