May, 2006

Rand’s Progress

May 2, 2006
Day 93

Things are finally starting to happen again for Rand. The resort vacation is over - at least the end is in sight! Much to his dismay, OT/PT/ST are on the horizon. Rand groans when he hears those words and I cheer! Today the nurse came to evaluate him, changed his bandage, did all the intake stuff to get the ball rolling. She will be back tomorrow and every other day for a week. Then she will see him every third day for a week and decide the schedule from there on. The therapists will each evaluate him and decide on their schedules - then finally, away we go! He will be receiving therapy in-house for many weeks and at some point he will be transferred to outpatient therapy at the hospital. The nurse even applauded our teamwork when transferring Rand. That was nice to hear. Rand's sense of humor is coming back. When we transfer, I have to hold his waistband with both hands to hoist him to a standing position, pivot him with his help and lower him to the next bull's eye. Today when we were in the middle of that process, Rand grabbed my waistband and tried to give me a "wedgie" - chuckling all the time! We wound up laughing so much that I almost dropped him mid-way! What fun it is to have another piece of him back!

Wonderful friends continue to brighten Rand's day and several more came today. One of them was Jim Kooper, from University Barber Shop in Los Gatos. He gave Rand a much needed haircut and covered all of my mistakes as I clipped his hair over the last couple of months. He looks so spiffy again!

As always, I have a few suggestions for those of you who will be visiting Rand. If you want to bring something, a cold bottle of water is perfect. His blood pressure is low and the nurse thinks he may be dehydrated. He always has water available, but he does not remember to drink it, plus it gets warm. Bringing him a bottle of cold water, plus one for yourself, and encouraging him to drink it along with you might help. He needs lots of liquid intake. I am putting together a bunch of activities that you can do with Rand to help him with speech and cognition, hand-eye coordination, writing and basic skills. They range from bean bags to toss, white boards to write on, flash cards of colors, numbers, letters, animals, everyday objects, sounds; clocks, match-the-items books, etc. I know how difficult it can be to spend time with Rand when he cannot respond and gets so frustrated when he tries so hard to communicate. These activities can help Rand, help you have a good time with him and spend the time productively. I'm making up activity sheets for each item and placing them in labeled envelopes All the envelopes are in a big basket near the TV, just pick one and have a good time together. There is also a red plastic case that contains felt pens, bean bags, a deck of cards and a baggie full of coins for him to sort, count, name, etc. Lots of praise, encouragement, laughter, are the keys. Take it slow, allow Rand plenty of time to respond and remember that we are going for "close enough", an approximation, not perfection in his responses. Thanks for helping him in this way.
Rand is settling in more each day. He is adjusting to the good food, learning how to operate the remote control, has yet to figure out the remote for the ceiling fan. He seemed more content today and was curious about things on the shelves. He recognized items when he examined them and played with his red truck and Farmall tractor for a while.

I hope you have time to pay him a visit. The afternoons from 1:00 to 4:00 are best. He has dinner at 5:00 and is ready for bed by 8:00. He has been sleeping so much in the afternoons that he doesn't sleep at night, therefore, keeping him busy and alert in the afternoons is doubly important. Give me a call/email when you'd like to stop by so he doesn't have a cast of thousands in one day! Thanks.

Keep Rand close to your hearts.

Love,
Connie

May 3, 2006
Day 94

Tonight Rand's bowling team, The Patooties, won first place for the season! Congrats! Rand will be pleased.

Rand had another day with several visitors, the power control on his hospital bed was replaced and the phone in his room was hooked up. I'm not sure of the number yet, and it will be used for calling out rather than accepting calls coming in. Rand can't respond to the phone, so someone has to be there to answer it for him. More on that later - another day.

This afternoon when I said good-by, see you tomorrow, Rand said OK. This was the first time in over a month that he hasn't been upset with my leaving. I think he understands that I will be there tomorrow, unlike Vallejo, and he is settling in to a comfortable routine. Digestion of food is still causing some problems, but when you realize that he was fed a liquid by tube for six weeks, then pureed baby food for another few weeks, followed by institutional food, home cooking would probably cause all of us some problems.

Tomorrow Rand will have more visitors and Friday will bring two events - Rand's visit to his regular doctor for the first time since his stroke and I will be putting "Skippy", my special VW Super Beetle, on the block for sale. I hate to give it up, but I can't transport Rand in it and we do not need two cars anymore. Plus, some day that space in the garage will be needed for a wheelchair ramp for Rand.

I'm continuing to put activity packets together for visitors to use with Rand. Every day I add an envelope or two to the basket in his room. In each envelope there is a plastic sleeve, one side contains work-in-progress suggestions on how to use the materials with Rand and the other side contains a sheet with the "Helping Rand" information below. One extra caution: please do not mention "home" to Rand. He does not remember our home together, his garden, any of the things associated with 6591 Jeremie Dr. and it is best left that way. Maybe some day he can return, but for now, where he lives is his home. Thanks.

"HELPING RAND

Everything Rand has ever known is still in his brain.

The stroke has scrambled his brain's ability to access, organize and deal with information that he hears, sees and that he wants to express.

The stroke has short-circuited his basic communication functions as well as his ability to deal with and understand the world around him. He is easily confused.

In order to help him understand directions, conversations, and other information, remember to:

- slow your rate of speech
- shorten your phrase length
- support speech with gestures or drawings
- decrease background noise
- don't assume that the information is understood
- one-to-one communication is easier for him to process
- encourage responses by any means necessary: writing,
gestures
- encourage Rand to try something again in another way
- encourage Rand to slow down and take his time
- praise, encourage, accept and applaud Rand's efforts!

Thank you, good friends, for helping Rand make even more progress
on this very long and difficult journey. Your time and commitment are precious to us."

Keep Rand close to your hearts.

Love,
Connie


May 4, 2006
Day 95

This afternoon I was shocked to see Rand write, in perfect printing, the words, "Rand, Connie, sister," on the Magic Board! Left-handed his printing was absolutely perfect! I couldn't believe it! I didn't know he could do that! WOW! I'm impressed. I'm overwhelmed. I cried. What else has he learned that I'm not aware of? It brought home the urgency of keeping his progress going, of not letting him slip backward. To that end, there are now eight activity envelopes in Rand's Room ready for your use with him when you visit. They are in and around a large basket near the TV set. Each envelope contains a plastic sleeve with "Helping Rand" on one side and the suggested activities for the item on the other side. The envelopes are:

Writing Activities
Magic Board
Readiness Activities
Red Plastic Case
Box of Objects
Attribute Blocks
Sing-A-Long
Range of Motion Exercises.

Several more activities are coming - I just haven't had time to deal with them yet - by Monday for sure! All of the activities will help Rand with a variety of needs, but if you can only do one, make it the Range of Motion packet. This comes from the OT at Vallejo and Rand should be doing them twice a day. They are 10 quick, easy movements that will help his arm and shoulder muscles stay flexible and keep them from freezing up. Each movement should be repeated 10 times and he can do them while in his wheelchair, blue chair, at the table, in bed, where ever. Do the exercises with him, be the model and you can laugh together! All of the exercises, including repetitions, will take about 10 minutes total and will be so helpful to him. Thanks.

Physical, occupational and speech therapy for Rand will not start until next week. In spite of my protests and complaints, I've decided that this is a battle I cannot and will not fight. I will save my energy for bigger things down the road - like the quality and quantity of his therapy, if necessary. Tomorrow we visit his doctor and see if we can get one of his meds changed, what the next steps will be, how often he will be reevaluated physically, cognitively, etc.

Several friends visited Rand today and he was so happy to see everyone. Please let me know when you plan to visit - I'm acting as his Pearl Mesta for the time being!

Thanks. Keep Rand close to your hearts, in your thoughts and prayers.
Love,
Connie

May 5, 2006
Day 96

Today Rand saw his primary care doctor for the first time since his stroke. Nothing new or earthshaking was discussed. He wants Rand to have outpatient physical therapy instead of in-home, and I agree. The therapy department at the hospital has all the equipment to continue the progress he was making, while in-home therapy is barely able to maintain where he is, let alone where he was. OT and ST will continue to go on in-house for now. The answers and arrangements should straighten out this coming week. The doctor agreed that vascular surgery is way down the line - as he said, Rand's stroke is "still fresh," and it is far too early to consider something that invasive. So, take that, Vascular Surgeon!! The communication between all the doctors and specialists in San Jose and Vallejo is complete, comprehensive and impressive. I feel good about Rand's care.

Tomorrow a friend and I are going to the SJ Rep Theater and then out for dinner. It will be good to get away for a few hours and I'm looking forward to it. Today, an old friend of Rand's sent him a bobblehead statue of Big Ole the Viking which stands in a prominent place their hometown of Alexandria, MN. What a hoot! Rand loved it and we took some time to find just the right spot for it on his shelves. Thanks, Solveig! A picture of Rand with the original Big Ole is below. I took it of the two of them last fall when we were in Minnesota. You can just imagine what the bobblehead looks like! Uff da!

Today I also bought a wheeled cart with shelves to hold the activity envelopes. It is not great looking, but it does the job for now. The big basket is gone. There is also a good-sized laptop desk with a beanbag bottom for Rand to use when he is sitting in his wheelchair or in his blue chair. We wrote and practiced saying his first and last name and he can pronounce it well when prompted. He cannot answer when asked what his name is. He knows that he should know that information, becomes frustrated and either laughs it off or becomes very sad. The doctor said that his aphasia will improve with time. That is my greatest hope and prayer.

Today I put my great little car, Skippy, on the block at a car sales place. I hope she sells quickly and goes to a good home. Tonight there is another hole at our house - an empty space in the garage for the first time since 1968, when we moved in.
Love,
Connie

Two Vikings together!

May 7, 2006

Days 97 and 98

Today Rand, friend Geoff and I took a walk using his new umbrella; drink holder and side arm basket/pocket thingy. It is back to the drawing board on a couple of things, as they didn't quite work the way I planned, but not too bad. I've ordered new brake handle extenders with bungee cords to attach them to the wheelchair but they are yet to come. Hope they do the job.

The Wound Care Nurse changed the dressing on Rand's hip this morning and it is healing nicely - now it is about the size of a dime where originally it was the size of a credit card. Therapy begins Monday, but the full schedule is unknown. The doctor will call to schedule outpatient physical therapy at the hospital this week and Occupational Therapy begins in-house tomorrow. Speech therapy will also be in-house beginning this week. All of those things will affect Rand's schedule for visitors. Please call or email me to let me know when you want to drop by.

Our good friend, Gary, came by again this morning to fine-tune the outdoor lighting and irrigation system timers. He also changed the furnace filter and spread crushed granite on the walkways around "The Farm." What a huge help! I got a training session on how to do the timers, thank goodness, and I also got a bunch of pruning done. It is starting to look reasonable around here again.

This afternoon Rand sorted coins and wrote several words. When things didn't come out right, he got very depressed. Talking on the phone to my sister put him in a better mood, but when I left, he was still down. He still isn't sleeping well at night and not taking a nap in the afternoon so I think he is tired. He has only been there about 10 days so lots of adjustments are still taking place. I hope things pick up for him this week.

Thanks for the ongoing cards, calls, visits and email. Rand loves them all. Keep him tight in your thoughts and prayers.

Love,
Connie


May 10, 2006
Days 99, 100, 101

This is another epistle of musings, reflections, anger, frustration, woes and whoopies, rainbows and Randbows that have marked the beginning of triple digit days in this incredible time in Rand's and my life.

Rand is well. He has good days and bad days like all of us. His bad days are really miserable, filled with a lot of pain, frustration and depression. He has a sparsely given narcotic to take when things are very bad. On Sunday he needed one. His good days are joyous, filled with his good spirits, hard, hard work, determination, laughter and some teasing. He is eating well, thoroughly enjoying visitors, patiently dealing with the endless prodding, poking, needles and tests from caregivers, nurses and evaluations by a new set of therapists. His doctor said that he should have whatever he wants to eat, such as favorite dishes. Yesterday I made a Taco Salad for us for lunch and served him his favorite Its-Its Bar for dessert. Today I brought him Twizzlers and he seemed to enjoy those more than anything! Oh, well - if Rand's happy, then I'm happy.

Tomorrow, May 11, marks three weeks since Rand returned from Vallejo Rehab Hospital. It also marks three weeks since he has had any therapy. I can see his decline in muscle strength, balance and joint movement. Friends and I have been able to keep his mind and speech intact through daily activities, but not moving forward. Promise after promise for therapy has been broken, so Monday, I chose my battles and went after the people in charge. I will spare you the gory details. Suffice it to say that I have been determined, aggressive, at times an unpleasant, and an intimidating advocate for Rand. I have talked to supervisors, directors, line staff, been ignored, left more voice mail messages than you can imagine, demanded to speak to people who are suddenly "away from their desks,” caught people in lies, cover-ups, duplicity and have demanded explanations. Once again, Rand is known as the nice guy with "the wife!" No matter, he is now getting action like Buster's Gang! My phone has been ringing off the hook for the last 24 hours as these folks call back, apologize profusely, schedule appointments for the remaining two days this week, arrange for the insurance company to approve more therapy, etc., etc. I have told them that I accept their apologies, do not want to hear about it again but want quality action ASAP. What on earth happens to people who don't have an aggressive advocate? Rand would languish in the black hole of insurance hell if someone didn't go to bat for him. It isn't me, it is having someone, anyone, navigate the system on behalf of a defenseless person. It makes me angry, frustrated, scared, fighting mad and pissed off. I have informed the faceless folks that I will be at every therapy session and I expect to see the highest quality therapy - comparable to Vallejo. If Rand doesn't get it, then I will be their worst nightmare. So far, high-pitched character analyses has worked!

The other night, a friend and I went out for a wonderful dinner and then to a lecture by Maya Angelou. I hadn't heard her speak in 25+ years. She was marvelous - a real treasure! I laughed, cried, applauded, and had an inspirational evening. Her reoccurring theme was that God put clouds in our lives just to show off rainbows of hope when the sun doesn't shine. I had more than my share of tears at her references. Randbow's Rainbows were always with me. My friend understood. When I got home, I had the picture below emailed from my cousin in Farmington, MN. She took the picture because it reminded her of Rand. Thanks, Pat.

Keep Rand close to your hearts, in your prayers and thoughts. Also, keep the bureaucrats in whatever part of your heart and brain that will insure that they do their jobs and keep Rand in their frontal lobes!

Love,
Connie


May 11, 2006
Day 102

By 3:30 today, Rand was pooped. All the therapists showed up today (including an additional nurse) and put him through his paces, evaluated him and made arrangements for next week's appointments. I guess it is that old management technique call "Kick Butt and Take Names" at work! After the last one left, I transferred Rand to his blue chair and with huge sighs of relief he was asleep in minutes. Tomorrow the OT returns and then he is free until next Tuesday. Yikes, this has been quite a week!

I sat through all the therapy sessions as promised and I was pleased with what I saw. I was also able to contribute some things such as the basic procedures for transfers that he learned in Vallejo, what he was able to do three weeks ago, his history since the stroke, etc. I also transferred the job of signing all the triplicate insurance forms back to Rand. He printed his name in the correct space every time. Interesting what basic skills look like these days!

We have had very warm and muggy weather this week but Rand's room has been fine. The ceiling fan really helps. We went out for a walk this morning between therapy sessions and the breeze was wonderful.

This afternoon the arm of Rand's wheelchair started falling apart. I took it to the hardware store and then went home and fixed it while he slept. Now I'm trying to come up with a creative way of attaching the brake extensions to the wheelchair frame using small bungee cords. I found some online, ordered them, it took forever and then they sent the wrong ones. There's got to be a better way. I made one version/ prototype for one arm of the chair and we'll see how long it lasts. Today I spent the whole day with Rand; tomorrow I plan to take half the day to get stuff done and hope that I can do the same for the next several days.

Today some friends sent me an email with clever sayings. One of them says, "Everything is always okay in the end, if it's not, then it's not the end." Guess we're still somewhere near the beginning.

Thank you for your good thoughts, prayers, calls, cards and emails. Your wonderful care and concern has brought us this far - which is a long, long way. Thank you once again, good friends. Keep Rand close to your hearts.

Love,
Connie


May 12, 2006
Day 103

This afternoon, we received an unexpected phone call from Rand's sister, Karen, and her husband, Kaj. I answered the phone, talked to them briefly and handed the phone to Rand. He heard Karen's voice and said,"Hi, Karen!" I about fell over! Rand doesn't "do" nouns, let alone pronouns and here he was, for the first time, greeting his sister by name. I talked to Karen and Kaj later this evening and they noticed an improvement in his vocabulary, too. He cannot make his wants, needs and thoughts known, but he is getting closer and closer to success in that area. One of these days he'll tell us what he is really thinking! Uff da.

Rand had OT this morning and visitors this afternoon. The OT said that he stood with 80% assistance and did other things with 50% help. This afternoon we went for a walk, read a little from Sports Illustrated, Rand had a snack, we solved some world problems and I left shortly after 5:00 p.m. Tomorrow I am going armed with a stepladder, ammonia, squeegees, towels, sheep skin scrubbers, etc. and clean his windows. When I told him what I was up to, he said "Why?" This from Mr. Anal-Retentive-About-Clean-Windows! One of the few things that holds his interest is watching the comings and goings on the street and his windows need cleaning so he can enjoy the activities fully. His windows are filthy! I can fix that.

On Sunday we are going to do a trial run of an outing in the car. Rand does not understand why this is a big deal. He wants to go for a ride and when I tell him about the logistics of transferring him in and out of the car, he blows it off. Of course you can do this, of course he will help, what's the big deal? Let's go. Uff da. My plan is to drive him out into the countryside so he can see the beautiful green hills before they turn brown for the summer. Maybe we will stop near a lake for a while to take in the activities. On the way home, I plan to go to a pizza drive through place and get two slices to go with soft drinks. Then we'll head back to his house for a late lunch. So what if I spoil his dinner?? I think it will be a good time for both of us.
So far, my brake extension, bungee cord holder thingy for Rand's wheelchair has held up for 24 hours, so I made another one for the other wheel brake this afternoon. The Patent Office folks are not beating a path to the door, so don't hold your breath on being cut in on the invention of the century! I hope it works, at least until I can come up with a better solution.

I've always enjoyed baking breads and desserts. The last four months have been basically cookless and bakeless around here. Now I have a new audience! Breads and muffins are scarfed up by Rand and his fellow residents, Dorothy and Abe. Tomorrow a new resident arrives, a kindergarten teacher that I knew vaguely in a former life, so I'm making a cheese bread to take over in the afternoon. Blueberry muffins are next on the list. These things make us all fat and happy!

Rand is settling in, is comfortable and relatively content. Thank you for your on-going thoughts and prayers. We talk of you often with smiles and good memories. You are so special to us.

Love,
Connie

May 13, 2006
Day 104

Today was window-washing day. Just as I was about to begin, in walked good friends for a surprise visit. Who was more surprised, Bert, who wound up removing and washing screens, or me who got great help? Rosemarie and Rand supervised streaks and missed spots from inside. Whatever - it was wonderful to see them and to catch up on their lives. Rand can see clearly now, the rain has gone, so has the ugly film and dirt from his window to the world. Bert and I also managed to water and fertilize some plants and to spray the rose bushes for mildew, aphids and other nasty things. I think I will take on the care, watering and feeding of the plants below Rand's window as my special project. The owners will be doing major landscaping/renovation in the near future, but until then, there needs to be a bright spot under Rand's new, clean windows! That I can do. After Bert and Rosemarie left, Rand and I went for a long walk. The weather is glorious and the breeze felt wonderful.

A fourth resident is settling in this evening in Rand's House. She was a long time kindergarten teacher in Union School District (who lost her husband a month ago) and one of her daughters is a recent retiree from Union SD. When the daughter and I talked yesterday, we found that we have some colleagues in common and she and her sister know Rand by his reputation in Los Gatos. What a small world! I'm making a special loaf of bread to take over tomorrow. It is a joy to have an appreciative audience to consume my baking efforts! It is extra special for Rand to have a bright-eyed and bushy tailed person to be around. Dorothy and Abe are nice, but Abe is silent and Dorothy is close behind.

Tomorrow Rand and I will venture out on our first opplevelse (Norwegian for adventure) together. I plan to take him out into the countryside for a drive, stopping to see the hills, smell the flowers, and watch the activity on a lake or two. At the end of the outing we will stop at a drive though, pick up a few slices of pizza, some soft drinks and head back to his house for a feast that is intended to ruin his dinner! This is a test run. There are many perils associated with this trip and even though Rand sees it as a piece of cake, I am nervous about it. I am not taking the wheelchair on purpose. Getting Rand into and out of the car is still a two-person transfer. I need to have an excuse for not going exploring at one of our stops. This outing may be a stupid idea, one that I will regret, one that opens Pandora's box and one I cannot put the lid on. We'll see. I have to try it, I have to give Rand every shot at normalcy that I can. He's raring to go - I may be crazy!

The "Brake Extension Bungee Holder Device by Connie" is working well. I added another fastening device today that I think/hope will make it last for a few more days. No calls from venture capitalists looking for patents yet! Stay tuned.

Tonight, once again, I'm exhausted. The gardeners arrived bright and early this morning and I worked with them off and until early afternoon. They trimmed, pruned, moved plants, took out old ones, put in new ones, put mulch/bark in all the planting areas. I also did the laundry and ironing before heading off to Rand's House and window washing, etc. The front yard and entry look like a million bucks! Next weekend they will come back and finish the back yard. There are already five tomatoes on the plants that Gary put in two weeks ago. Wheee! I finally got the basil planted yesterday so I'm ready for a bumper crop!

When friends ask Rand how he is doing, he says, "Fine." When friends ask me how I am doing, I say. "Fine." Both of us are lying. Both of us are doing the best we can - some hours/days are better than others. Every day we laugh, smile, and have good quiet time together. We also have tears that are about 1/16th of an inch below the surface, great depression and sadness that we do not allow to surface in each other's presence. Rand still reads me like a book and his attitude is a total reflection of my mood. I stay positive, happy, upbeat and smiling when we are together, so he will also. Sometimes the pain and frustration are too much for him and he has a meltdown. I save mine until I get home at night. We are marching towards four months - does it get easier? When will we/I accept the situation and move on? Rand might not be able to do that but I know that I have to or else I will not be healthy again. Keep us in your thoughts and prayers, good friends - we both need it.

Love,
Connie

May 14, 2006
Day 105

"Rand and Connie's Excellent Adventure" today was a success! We drove around the countryside, commenting on the green hills, beautiful CA oaks, the nicely spaced cattle among them. We stopped at three lakes/reservoirs and watched the activity of loading and unloading of boats and jet skis, watched them zoom around the water, water-skiers falling in, kids and dogs at play, picnickers, etc. Rand was interested in everything and thoroughly enjoyed every minute. He oooooohed and ahhhhhhed appreciatively as we went around every corner. We even drove through the golf course where he had his retirement dinner. He said that he recognized everything, but it also seemed new to him. We drove, by necessity, very close to our house today and Rand made no comment, nor did he look in that direction. He was very quiet during our 2+ hour outing but indicated that he wants to do this again and again. We stopped and ordered a pizza and took it back to his room. He loved it! He washed it down with a Pepsi and was happy as a clam. He was also pooped. It seems that 2 hours is about his limit in the car and we exceeded that. He still has trouble sitting up straight and his right arm is a dead weight pulling him down on that side. We had pillows tucked around him, but they had to be adjusted at each stop. He was a real trooper and sighed with happiness frequently.

Rand made it known that next time he wants his wheelchair along so we can get out of the car and stroll around. Tomorrow, our local transit agency will be picking us up, taking us to do all the necessary paperwork to get Rand a pass for Outreach/Paratransit. That way, we can call for door-to-door pick up and delivery via a wheelchair van and they will take us where we need/want to go for a minimal fee. I've heard the horror stories about being left, forgotten, etc., by VTA, but we're still going to give it a try. It will give us the flexibility Rand needs to get out in the world and not be cooped up, as there will be no need for two person transfers. We can go to malls, shopping areas and have lunch, visit city parks, nearby towns, all kinds of opplevelse's await! We go for a walk everyday, but there is nothing like a real change of scenery, especially after being confined to a hospital room for three months.

Recently I learned that in CA., when a person has a stroke, DMV is notified and their driver's license is immediately suspended. In order to get it back, the person has to go through all kinds of medical and DMV hoops. I wonder if I need to get some other kind of photo ID for Rand. Never thought of that.

After months of complaining about the incessant rain, we are now complaining of the hot, humid weather. Rand's room is very comfortable, thank goodness, and we always have the natural air conditioning of the Bay which arrives in the late afternoon to cool everything down.

All is well. Keep Rand close to your hearts.

Love,
Connie

May 15, 2006
Day 106

It was close to 100 degrees today - but Rand's Room was OK with the fan going. He was not hot, but I took his leg brace off this afternoon and he loved it. That thing has to be so miserable.

This afternoon we were picked up by Paratransit and taken to their office for an interview. In the office, Rand was seated some distance from me and kept looking over the top of the computer monitor, like "I'm here - are you there?" All went well, he had his photo taken and should receive his pass in 10-14 days. Paratransit is a cashless system. I will put an amount of cash into his account and $7 will be deducted from the account for each round trip that he takes. Caregivers are free. I'm looking forward to trying it out.

This morning some friends visited Rand, and Gerry brought playing cards with large numbers on them. She played Blackjack with Rand and he participated and loved it! I'm amazed - he could count, add, knew if Gerry or he won. Dede was there to prompt him, Paul played along, they showed each other's cards and Rand was involved. What a marvel - I had no idea he could do that! If you want to play Blackjack, there is a deck of cards in the Big Red Box and I'm going searching for cards with large numbers! Rand used to love cribbage and all kinds of card and board games. If you are a "gamer" of any kind and want to try playing games with him, go for it! I have not included games in the activity centers, so if you have suggestions, I'd love to hear about them.

Rand and I had planned to install two ceiling fans this past winter. Today they were done. It is so nice to sit here at the computer and have a fan going plus a light. Rand wanted to have this fan look like the nosecone/propeller of a WWII fighter plane, painted red, white and blue. It couldn't work because the fan was too big and the ceiling too low. The ones that were installed were Plan B and they are fine.

Tomorrow Rand has therapy coming out his ears - YEA! He also has some visitors scheduled so it will be another big day.

Wednesday is Syttende Mai, Norwegian Independence Day, so we will have the Norske flag flying high. Don't forget to fly your flags on Memorial Day, June 14/ Flag Day as well as July 4th. Rand passed out flags and poles to neighbors every year and decorated our lawn with small flags. Flying the colors is a great way to honor him and remember his Captain America spirit. I am flying a flag at Rand's House, too.

Keep Rand close to your hearts.

Love,
Connie

May 16, 2006
Day 107

Happy Syttende Mai on Wednesday, May 17! The Norwegian flag is flying high from Rand's flagpole in honor of Norwegian Independence Day. (see photo below) Our celebration will be quiet this year - or maybe filled with a few games of Blackjack!

Rand had another busy day with ST, OT, PT and several visitors. The brake extension invention is still holding up and I repaired his right armrest holder today. I'm becoming little Miss Wheelchair Repair Lady!

For those of you in the area, some friends and I are planning a hands on/social time focusing on the activities you can do with Rand when you visit him. This event will focus on the activity envelopes I've put together to help reinforce the skills he needs to keep his mind active, increase his vocabulary, improve his speech and cognitive skills. They will also help you spend quality, productive time with Rand when conversation can be difficult. These activities are works in progress and I'm looking forward to your input and help in refining the directions and adding more activities. The probable date is Sunday, June 4 from 3:00 to 5:00 p.m. at our house. I will be sending out invitations with all the details. I would hope that those of you who can attend would be able to plan to spend 45 minutes or so once a month with Rand using these or other activities.

Keep Rand close.
Love,
Connie

May 17, 2006
Day 108

This was a quiet day for Rand, as he didn't have therapy or guests. Tomorrow is another story - one therapy session after the other. This afternoon we played many hands of Blackjack and finally started keeping score. Rand is learning to say, "hit" but he hasn't mastered scraping the corners of his cards on the table yet. I got most of the good hands so I wound up being the International Syttende Mai Blackjack Champion - but the glory of it all will be short lived as Rand is good and getting better. I find it so interesting that the left side of the brain is the mathematical, logical side and yet he adds up those cards like lightening. He corrected me when I didn't deal in the proper order and once when I added wrong. He's amazing. On Friday I'm going to bring in our laptop computer again and see how it goes. The last time I tried it was in February - far too early.

Keep him in your thoughts and prayers. He's as sweet and handsome as ever!

Love,
Connie
May 18, 2006
Day 109

This was another busy day, filled with therapy sessions, a visit from the social worker, some friends, who judging by the back of an envelope, played A LOT of Blackjack with Rand! We also had a long walk this afternoon. But this evening - Wow! I'm still teary. About 7:00 I got a call from the doctor who, with his RN wife, own Rand's home, telling me that Rand was singing! I jumped in the car, got there in time to hear the tail end of a song. They have a fancy karaoke set up in conjunction with the large screen TV set. The residents and caregivers, doctor and nurse, were all in the Family Room singing with the karaoke music and who had the mike and was leading the sing-a-long??? - your friend and mine, RAND! When they saw me, they immediately put on "Moon River" and Rand sang his heart out - better by far than Pat Boone!! Years ago, before we were married and Rand was teaching high school in Minnesota, the kids would enlist him to sing "Moon River" at the Homecoming dance, the prom, etc. I was overwhelmed, overjoyed and completely astonished to hear him sing that song again! Plus, he appeared to be reading the words on the screen. He wasn't, he knows how to look like a reader, and pieces are coming back, but so far that is beyond his grasp. But the whole thing was just plain wonderful! There were cheers, applause, high-fives all around. I don't know how many Kleenexes I went through. As he was singing, Rand would look over at me and smile - he knew. He really, really knew. I'm in heaven! I wonder what miracles tomorrow will bring.

Keep Rand close - all of your support is working miracles.

Love,
Connie


May 19, 2006
Day 110

Rand had a busy afternoon. A good friend who is a speech therapist worked with him for over an hour. They worked on nouns, sorting, things that go together and pronunciation. Theresa is so good with Rand and the time was very productive. Rand does not have any nouns in his vocabulary and few if any pronouns, which makes his communication even tougher. He understands them, but can't find them in his brain. When he does get one, he repeats it over and over, trying to impress it into his memory, but his memory also fails him. Sometimes the frustration is unbearable.

We went for a walk today and met the mailman. He knew of Rand through his neighbor and former student, Laurie! What a nice guy! Rand was so pleased to have someone to greet on the street. Later this afternoon three former colleagues came by for a visit and Rand thoroughly enjoyed their company. They hadn't seen him in over six weeks and were impressed with his progress.

Today, all three caregivers left. Two are getting married (to each other!) and the other one went back to the Philippines to be with her children. They had given notice and new people were brought in a week ago to ease the transition. I sure hope this is not a pattern.

We're looking forward to more company this weekend. I was going to take Rand on a drive, but the weather is cool, wet and foggy, so I'll wait until next week when things improve.

Keep Rand close to your hearts. Days and nights are long for him.

Love,
Connie

May 20, 2006
Day 111

Rand had some visitors today and cleaned at least one of their clocks at Blackjack!! He is amazing. He will have some more guests tomorrow and then we will have dinner together tomorrow evening, complete with a little wine, music and candlelight - very nice and close to being normal. I will be bringing over some of his favorite dishes and we will enjoy dinner together for the first time in four months.

Tonight we had the annual end-of-season bowling league BBQ. Rand and I have attended every one for the last 37 years. Tonight was the first time I've attended alone. Rand was the treasurer, one of the mainstays of the league and an awards presenter until last January. His team, The Patooties, won first place for the season. Thankfully, his teammates collected his awards and will take them to him next week. As nice as it always is, it was a very difficult evening.

Keep Rand close -

Love,
Connie

May 21, 2006
Day 112

It rained all day today and is still raining as I type this - more like mid-winter than close to summer. This morning good friends were here for brunch. It was so good to see them, to have company and to cook again! After leaving here, they spent time with Rand.

Tonight I brought dinner to Rand's Room, complete with wine, candles and music. Rand alternately sighed with pleasure and choked back tears. I asked him to try to tell me what he was thinking and feeling and he said no, over and over. So I took the risk and told him of my goal for us. I told him that with continued therapy I hoped that he would get strong enough to be able to help transfer himself, to become more independent in his movements and that by his next birthday, Feb. 24, he would be home again. He stopped eating, looked at me quizzically and said, clear as a bell, "I don't understand." I asked if he didn't understand about coming home and he said yes. I didn't know what to say next as I had not planned to say as much as I had. Sooooooooooo - I said that I wanted us to live together again and asked if he remembered when we lived together before. He thought a moment and said no.

I asked him if I could try to guess why he was feeling so down and he agreed. I tried all the words I could think of - sad, depressed, frustrated, angry, mad, bored, confused, confined, etc. He said no to all of them. He waved his arm around the room. I asked if he didn't like his room, he said no, that wasn't it. Could I change something, bring him something, do something - he said no over and over. Did he want to stand up? No. Go for a walk, no then yes, so we did that. I don't know what he wants and needs - I'm confused and frustrated. Before I left he hugged me, hung on to me, and the more we hugged the bigger his smile became. I asked if he wanted more hugs every day and he said yes. That's easy. I can do that. Is that all he wants? Needs? I should be thankful that he is not longing for home. I don't know what to do. Is it depression caused by the stroke that's talking? I know that I read my own feelings into his and that is neither accurate nor fair but I have absolutely no idea what he knows, thinks, understands, feels, and wants. Maybe he doesn't either. Maybe he doesn't understand the words I was using. Does he understand the concepts of bored, confused, depressed, etc? The psychiatrists and psychologists have said that they can't really evaluate him either because of his unknown cognitive capabilities that I know him best and all they can do is confirm what I think. That doesn't help much. Oh, man, I would give anything to know what is going on in his head.

I wonder if he is sleeping now or if what I said is keeping him awake wondering what I meant. This could make me crazy with guilt. I've got to stop second-guessing and put my energy into getting maximum therapy and all the other hurdles that are ahead of us.

Keep Rand close. He is safe but so sad and I don't know how to help.

Love,
Connie

May 22, 2006
Day 113

Thank you. I truly appreciate your thoughts and concerns about Rand's and my frustration, lack of communication, understanding, confusion and tears. Today I discovered that taking that big risk last night and talking to Rand about my goal for him to come home was as scary as it was liberating. It helped turn a page for me. I'm realizing, one more time, that my heart is ruling my brain. Rand does not understand much of what is said, nor know what I have been convinced that he does know. There was another incident today that confirmed how confused he is about everyday events. I won't bore you with the details, but suffice it to say that I was concerned enough to talk to the caregivers about his worries. The simple explanation/realization of his fear made me understand that I have been projecting my hopes for him onto his real progress and that his level of comprehension is much, much lower. I will never, never, never give up, but I have to be much more realistic, comforting, accepting and basic in dealing with him. This afternoon we had a "Connie's Traveling Beauty Shoppe" session and got him all spiffed up. That was probably more important to him than dinner, wine, candles and music. He was so happy. He has been so depressed that he has not been shaving, waiting for me to do the job each day. Has your wife ever shaved you? Yikes - then you know how basic Rand's happiness is!!

This afternoon I brought the laptop in for him to try again - first time in over two months. I set the font at 40 point and showed Rand how to type his name. He could not deal with the mouse and the keyboard was beyond him. We managed to type in a few words but, overall, it was unsuccessful. I pulled up a slot machine game and he enjoyed it for a while but got bored quickly. So much for that, for now.
We went for a long walk and met the mailman, Tony. Tony is wonderful and knows about Rand through Rand's former student and now friend, who lives a few doors away. Tony greeted Rand, shook his hand and stopped to talk briefly. Rand was so pleased by Tony's greeting that he started to cry. He recovered quickly and we moved on. Rand waits at the window to see Tony make his rounds, to come up the sidewalk and he waves at Tony. Tony usually waves back although he cannot see Rand due to the glare - he just knows he's there. Tony is a jewel.

A couple of weeks after Rand's stroke, I spent some time with a counselor/therapist. She is wonderful and helped me come to grips with some of the immediate realities of our situation. She has called me now and again in the intervening months just to check in. I have an appointment to see her again later this week. I am approaching another crossroads and I have to have help dealing with it. Rand is the love of my life and I am having major trouble keeping things in perspective. Building a new life for myself, shedding guilt, not being with Rand for hours every day, moving on are so, so difficult. I have to do it, but I can't do it alone.

In many ways, Rand is like a two or three year old. His attention span, communication, hygiene, interests, are so basic. Yet he responds in other ways like he always has - kind, loving, welcoming, and curious. He has little memory but knows everyone by face and voice. He appreciates everyone's visits, cookies, time and caring. He tries so hard to talk, to let us know what he is thinking, but to no avail - YET! Who knows what is yet to come!? My brain will never overtake my heart and hope!

Keep Rand so very close to your hearts.

Love,
Connie

May 24, 2006
Day 115

As of today I have become the unofficial caretaker of the roses and azaleas in front of Rand's window. No one pays much attention to them but Rand appreciates them so I decided to take them on. This afternoon I turned over the soil, weeded, made trenches, fertilized, hauled buckets of water (the hose is too short to reach), sprayed for every bug and pest and pruned them within an inch of their lives! I think they will be happier with some TLC and we should see results soon. Rand supervised from the shady part of the sidewalk and he approved of my efforts. After that we went for a long walk, watching the beginnings of several remodeling jobs, big and small, along the street. We saw Tony the mailman and Rand greeted every person who was outside. After an afternoon snack, he was ready for a nap. Along with OT and ST this morning, he had a busy day. With all my physical activity and daily walks wouldn't you think I'd lose some more weight? Boy, are my calves getting strong as I push that wheelchair up and down bumps, over curbs, around obstacles, all over the neighborhood! Are muscular calves good?

I have started to get my ducks in a row to do what needs to be done to get Rand the quantity and quality of therapy that he needs. My understanding is that the Medicare guidelines are that three hours a week of therapy is maximum. I need clarification on that. Two hours a week is not cutting it and he is losing ground physically since he left Vallejo. I'm waiting to see what comes out of our meeting with the physiatrist (a doctor who specializes in stroke related health issues) on Friday. The therapists have offered to train CNAs to work with him five days a week, to the tune of $1200+ a month. I'm very tempted to try it for a month and see what progress can be made. On the other hand, the speech therapist told me tonight that Rand is accurately processing only about 60% of what he hears. So, last Sunday when I talked to him about my dreams of his coming home and he said, "I don't understand," he could have meant that the words that he heard from me made no sense - that what he heard was that "the apple is on the house,” or some such. The speech therapist is cautious about his prognosis and hopes that his verbal expression will eventually get to single word responses that are accurate. His memory capacity/carry over from one session to the next is unknown. It is too inconsistent because of his poor receptive language. She is not sure that Rand knows what he wants to say - his frustration with speech maybe due as much to his inability to organize his thoughts as it is with his trouble forming words. She repeated over and over that now is the time to push for therapy and constant reinforcement of skills. The more stimulation he gets in these first six months the better. Time right now is critical.

It looks like my dear little car, Skippy, is finally sold. Tomorrow I will meet the guy to sign the papers. He wants me to lower the price because he is paying cash - but I basically asked him what piece of "certified check versus cash" he did not understand. He's coming up with the price I want - in cash. Uff da.

Tomorrow will be another busy day as Rand has OT, PT and several visitors. In the evening I'm going out for dinner with a friend and then to hear Jane Fonda. Should be very interesting - Janet Reno, Maya Angelou and now Jane. In a couple of weeks we will hear Lily Tomlin and that will conclude the series. The lecture series tickets were a wonderful Christmas present from Rand.

Keep Rand close, keep his need for vastly improved receptive language foremost in your thoughts and prayers.

Love,
Connie

May 25, 2006
Day 116

Rand and I each had a busy day. Rand's was filled with therapy sessions and visitors. Mine was filled with a broken sprinkler line, selling my car, dinner with a friend and then hearing Jane Fonda speak. She was so refreshing, unpolished, not "canned" in any way and I thoroughly enjoyed her. Boy, does she need a hair stylist! Yikes! But she's got a very cute dog.

Rand has always been a Handyman par excel-lance - he has one of every conceivable thing in his workbench. Many years ago he and a good friend Geoff, teamed up to do larger projects around the house and it never failed, but they (or something) screwed up the project royally. For years they have referred to themselves as Frick and Frack.

Last week when I put up the flag in the existing holder outside on the garage doorframe at Rand's house, it flapped in the face of everyone who went to the front door. I asked Geoff if he would put a new flag holder on the opposite side of the garage doorframe to fix the problem. Today he did that. He even got Rand involved in the project and once again - Frick and Frack rose to the occasion! Below is Geoff's account of the two of them installing three little screws into a flagpole holder:

"Talk about a Frick and Frack operation!!! I go home to get my tools, go over and wheel Rand out. The wood is like granite, so I tell Rand I need to go to my truck and get the drill. Go to truck, no drill. Stupid German forgot to put it in truck! Wheel Rand back to his room, told him I would be right back. Go home, get drill right where I left it by the door! Drive back, wheel Rand out again take out drill and Rand helps me pick out the right drill bit and hold the screws for me. So I drill the first hole and try to put in screw and it is still like granite! So I go to get a larger drill bit, and take out the other drill bit and put it on the ground and it rolls in the crack between the driveway and walkway. Goodbye drill bit! So I drill a larger hole and had Rand squirt on some penetrating oil on the screw. I then set the can of oil on the sidewalk. As I am screwing in the flag holder, the wind blows over the can and we now have an oil spill on the sidewalk! So if it appears a little wet on the sidewalk by the new flag placement that is because I hosed down the sidewalk. Uff da!!"

And so it goes. Frick and Frack are still in business, I'm still laughing and I hope Rand is too. I'm sure Geoff is and it is good to know that the two of them are still a team.

More about Rand, the doctor's appointment, therapy, Jane, my session with the counselor - tomorrow. It is late and I need to hit the sack. I managed to grab Rand's freshly laundered pillowcase today, take it home, iron it with lavender water and get it back before it was missed.
Keep him close - I hope he is having good dreams tonight.

Love,
Connie

May 26, 2006
Day 117

Managed health care sucks. That is the least offensive way I can put it. Thank goodness Rand doesn't understand what is happening around him and understands little of what is said. The doctor's appointment today was an hour of frustration. He is an insecure, abrupt, insensitive lout and I didn't like him the first time I met him and like him even less now. After that miserable encounter, it took over an hour to get his prescriptions filled and then we waited over 90 minutes trying to get an ultra sound of his right leg before I gave up and took Rand home. He had been so patient, he was soooooooo tired, bored and hungry. Oscar, the private paratransit driver was wonderful. He drove us all over the medical campus, sat with Rand during the endless wait for the test that never happened, while I went to the pharmacy to get the prescriptions, plus he waited for us in the outer office during the long appointment. I couldn't have done it without him. I am about ready to tear my hair out and now we have to go back and sit and wait some more to get the ultra-sound done and then wait even longer to get the bone scan done. If anyone even seemed to care even a little bit, to give a rip about Rand, was the least bit concerned about his well being, or sensitive to his needs, I'd feel better, but that just isn't the case. Managed care sucks!

Now that I have that out of my system, it was a nice day. I cleaned the garage and rearranged things to handle one car rather than two. My special VW Bug became the eighteenth birthday present for a very sweet young lady. She is thrilled and I think Skippy has gone to a good home. I worked around the house, inside and out all morning, taking care of the gazillion things that always crop up. I made a bunch of phone calls, took care of one thing after the other before I went to see Rand. I was so pleased at his reaction when we finally returned to his room tonight. When Oscar pulled up in front of the house, Rand let out a sigh of relief and said, "Finally!" When Oscar wheeled him into his room, I said, "Home again, home again," and he replied with an enthusiastic "YES!!" I felt very good about leaving him tonight - first time in a long time. I think he is finally home.

My session with Meg, the counselor/therapist, yesterday was so helpful. She knows both Rand and me. We talked about many, many things, some painful, some happy, some mundane. She left me with two important thoughts. One is to remember that when we fly on a plane, we are always told that in case of an emergency, to put on our own oxygen mask first, then deal with the child traveling with us. I have to realize that the oxygen masks are dangling in front of both Rand and me, but I have to put mine on first before I can help him. The second important idea is that I must stop using the term "move on" when I talk about my future. No, I'm not moving on, which connotes leaving something behind, but I am adapting - every hour of every day. Putting on an oxygen mask and adapting to the daily events, realities and ambiguous loss of Rand are powerful notions for me. The term "ambiguous loss" comes from the title of a book that was recommended by a friend. It describes my situation exactly - Rand is there but not there. He is the guy I love but not the man I was married to for 42 years. Rand is there every minute of the day but losing him, not having him there is so sad, confusing and at times makes me determined that he will return whole again somewhere down the line. I'm slowly, so slowly adapting to the understanding that he will not be whole again, that the huge hole in my life is permanent. I will be seeing Meg on a weekly basis for sometime.

Rand is sleeping in a regular bed tonight for the first time in 117 nights. He was so tired that I hope he sleeps like a baby. Keep him close.

Love,
Connie

May 27, 2006
Day 118

The last time I saw Rand as I knew him was four months ago tomorrow morning. Four months ago today I was gone all day, doing Grand Jury interviews. We had our last cocktail time, last dinner at home, last evening together that night and didn't know it. I don't mean to be maudlin, but these things run through my memory frequently. There are times when I still feel that this is a dream, that I will wake up and Rand will be right here where he belongs and just like he always was. A dear friend said that the therapist, Meg, will be the needed third leg of the tripod that keeps Rand and me steady during the rockiest of times. What a wonderful analogy and so, so true.

Today I had lunch with one of my friends from the Grand Jury. It was so good to see her and to catch up on the other members. I truly miss that group, the work they are doing and the intriguing issues they are addressing. I would encourage you to look into the Grand Jury process in your area and consider getting involved, especially if it is as dynamic as the Santa Clara County Grand Jury.

Recently, I put Rand's driver's license in a safe place. Now I need it and can't find it. Uff da. I hate it when that happens!

Rand had surprise visitors today who also brought his favorite - homemade cookies! It was a delight to see them - they drove a long way to be here for Rand and we appreciated it and loved their company.

This afternoon the doctor who, with his RN wife, own and operate Rand's Room, came by for a long talk. He is everything I would love to have in a doctor for both of us. Unfortunately, he is an ER anesthesiologist and does not practice as a primary care physician. He went through all the questions I had for the physiatrist (Dr. Numbnuts) yesterday and discussed them all with me, explaining, elaborating, answering every one of my questions and concerns. He took risks in recommending what should and should not happen in various aspects of Rand's current and near-term treatment/care. I feel so much better after our discussion. Now I am clear on Rand's current situation, what I need to do next, what I can expect, what decisions I have to make in the short and longer term. Rand was there during the whole time but did not comprehend what was being said, at least very little of it, the same as yesterday. I am so, so, so very glad that we were led to this board and care facility. It is a haven for Rand and also for me.

Rand is complaining about the hardness of his new mattress/box spring. I have sat on the bed and know that it is harder than he likes. I will talk to the owners about locating a softer mattress, but in the meantime, I'm thinking about buying an "egg crate" type of foam pad to make his bed more comfortable. Have any of you had experience with those pads? Do they work? Are they comfortable? Will they do the trick? Are they lumpy and weird feeling? Is there something better? Any advice is appreciated.

Tomorrow Rand and I will go for a drive in the country again, a different route and for a shorter period of time. It is clear and beautiful but in the 60s with a steady wind - great kite flying weather but not great for a walk. Today Rand was bundled up in his Vikings blanket and Twins hat just to be cosy on our walk. He suddenly had a lot of pain so we cut the outdoor time short.

In spite of the long, tough afternoon yesterday, this has been a good week for Rand. He has had little or no depression, infrequent pain, has been content, smiling and his sweet self. That makes me more relaxed and content, too. Keep him close in your hearts, thoughts and prayers.

Love,
Connie

May 28, 2006
Day 119

Wow - I'm amazed at how many of you use and love egg crate mattress pads, memory foam pads, and a variety of similar items! I got advice on thickness, which side goes up, what's too hot, what doesn't work, and I appreciate all of it, even though each of you has your own preferences and theories. I bought the egg crate pad today along with a new down pillow and the bed is all remade. We'll see if Rand likes it and can tell a difference. If not, then back to the drawing board and we'll try something else. About a year ago we bought a Select Comfort/Number Bed and I love it. Rand set his side to # 65 and declared that he couldn't tell any difference from the old mattress. Hmmmmm. Rand selected # 65 because that's what Paul Harvey uses and if it is good enough for him - etc., etc. Hmmmmmmmmm.

There was an 89th birthday party at Rand's House today so there was cake and ice cream all around. He also had several visitors this afternoon and more homemade cookies and a plant arrived! Shortly afterwards Rand fell asleep, so I came home and will be going back in a few minutes. The ride in the countryside has been postponed until tomorrow afternoon. Maybe we can squeeze in a walk or at least a few hands of blackjack before dinner tonight.

All is well. Four months ago this evening as I left the Stroke Center, I didn't know if I would see Rand alive again or not. He waved as I rounded the Nurse's Station and I knew in my heart that all would be well - eventually. He has come so very far, good friends. Thank you for all of your support, help, prayers, good thoughts, cards, emails, phone calls, visits and concern. He's still got a row ahead of him and so do I, but we are adapting better every day. Give yourself a hug from us - you are appreciated.

Love,
Connie


Day 119, part 2

This afternoon I had an overwhelming urge to leave town, to run away, to spend time alone, to get out of Dodge - so I decided to do it. I've booked a ridiculously expensive oceanfront room with a balcony on Cannery Row in Monterey for Tuesday night, the only night I have available before July. I will spend Tuesday morning with Rand and the OT, then head south. I'll return Wednesday afternoon and have time with Rand again. I'm not quite sure what I will do in between. I'll probably spend time thinking about our futures, reminiscing about the past, cry, walk on the beach, stroll Cannery Row, have a Manhattan for sure and just be alone with myself. I'll probably be lousy company but I think I need to do this. I'm not good at being alone so this will be a test. Wish me luck.

Love,
Connie

May 29, 2006
Day 120

This afternoon, following a visit from a friend and a tie at Blackjack, Rand and I went for a ride in the country. We went to a lake/reservoir to watch the jet skis, water skiing, swimmers, picnickers and fishermen. I parked near the water, rolled down the windows and opened the sunroof. Rand leaned back in the seat, closed his eyes, smiled and let out the biggest sigh of happiness. He sat that way for some time, loving the breeze, the sounds, the smells and the sun. He was so happy and content. We stayed there for a while before Rand said, "OK" and we moved on. We drove to the nearby town of Morgan Hill via the back roads, admiring the fields of corn, vineyards and orchards. The hills are turning summer brown now but are still lovely, sort of half way in between their brilliant winter green. On the way home we stopped at a fruit stand and bought some local cherries. We sat and watched a long freight train roll by, ate cherries and spit the pits out the window. Does it get any better than that? We got back to Rand's House shortly before dinner and they were having KFC with all the trimmings! Yikes, did that smell good.

Apparently, Rand likes the foam mattress pad and new pillow. It is hard to tell what he thinks, but he slept until 9:00 this morning! That's a record!

Late this afternoon I had another talk with the doctor who owns Rand's Room and he recommended that the shots to Rand's abdomen twice a day be discontinued. Dr. Numbnuts wouldn't make a decision - he skirted the issue by saying that he had never seen a person have the shots for this long a time. Ho, hum. I have the feeling that The Good Doctor is going to make some waves with the powers that be about what Rand and I have been going through. I found out that Dr. Numbnuts has had a few letters of concern come before the Chief of Staff recently because of his unpleasant/arrogant attitude and rude behavior. I've asked The Good Doctor to help me find a great primary care physician and a new physiatrist for Rand as I intend to "fire" the current ones. We'll see what happens.

Thank you to all of you who emailed "You go, girl," words of encouragement for my escape to Monterey tomorrow. I'm feeling guilty about leaving, but I'm going to do it anyway and force myself into a new setting. Meg, the therapist, had suggested that I bring in a big calendar and help Rand cross off the days as they pass and devise a way of showing him which days I won't be there. Rand loves tractor calendars and has many in the garage. I brought one in today with most of May crossed off. I have decided that I will not go to see Rand on Wednesday, May 31 for the first time. I want to have the day with no pressure, to leave Monterey when I want, get home when I want and not feel obligated to spend time with Rand for the first time. So, I have decided to put a big red heart on the calendar on the days when I won't be seeing him. I told him that the heart means that I will be gone, but that I love him and will be thinking of him even though I won't be there with him. He seemed to understand. I will go over it with him again tomorrow, Thursday, Friday, etc. It is the beginning of a system of being away, preparing him for it, and knowing when I will be back. I hope it will work and allow me to plan a day away now and again. I hope he will eventually get used to seeing that heart once a week or so and be OK with it.

Once again, thank you good friends, for all of your support. We couldn't have made it this far with out each of you. You are also in my prayers and thoughts. Keep Rand close.

Love,
Connie

May 30 and 31
Days 121 and 122

"I have decided that I will not go to see Rand on Wednesday, May 31, for the first time. I want to have the day with no pressure, to leave Monterey when I want, get home when I want and not feel obligated to spend time with Rand for the first time."

That's what I wrote, felt and had decided on May 29, the night before I ran away. What a weenie I am! I couldn't do it. I got home at 2:00 this afternoon, did a bunch of stuff and by 4:00 I was walking into Rand's Room. He saw me and got very emotional. He knew that I wasn't going to be there and was so happy when I showed up anyway. Now it is going to be even harder to really not be there next time. Am I an enabler or what??

My 24-hour escape was so good for me physically, emotionally and psychologically. There were no "Ah-ha's," no lightening strikes, no profound insights or emotional hindsights. I walked for miles along the beaches, through parks, stopping frequently to sit on a bench along the shore, to watch the sea otters (my favorite), the sea lions, the wonderful yachts in the marina, people, and enjoy the spectacular weather and views. My face got sunburned and it felt so good. After all that walking, thinking and empty headed time, I decided that I'd earned a bag of salt-water taffy and a gloriously decadent carmeled apple covered with pecans. (I just polished off the apple and it was as good as I anticipated!) I had dinner at one of Rand's and my favorite restaurants on the wharf overlooking the marina. The Manhattan was OK, I've had better sand dabs and the wine was fine. I had the place to myself and thought about the last time Rand and I were there. I think I had sand dabs then, too and said I would never have them there again! I was relaxing in my room with a glass of wine, looking out at the ocean, by 8:00. I was sound asleep by 9:30 and slept for eleven hours. I was awakened a few times by the fog horn and barking of sea lions but went right back to sleep. It was the sleep of being truly tired in all ways. The long walk, ocean air, sunshine and total relaxation did the trick. I think I need to do this for myself once in awhile. It was good for my soul, my bod, my brain. Next time I might even schedule a massage.

After a huge breakfast (the chef was bored as there were few customers so he made me a special omelet that you wouldn't believe!) I drove to Carmel. I walked Ocean Ave. and was happy to see that there are some "real people" shops coming back. Last time Rand and I were there, the place was over-flowing with outrageously priced galleries, jewelry stores, leather shops, antique stores, etc. Nothing that held any interest for those of us who weren't into $5,000 and up purses, rings, clothes and things. I bought Rand one of his favorite pastries at a bakery and headed home.

This is probably more than you ever wanted to know about my escape from reality, but thanks for listening. I did a lot better and felt a lot better alone than I thought I would. I learned something about scheduling my time alone, about how to spend time with myself. I can do this. It is not my first choice and I would rather be with Rand, my best friend, but I can do it alone, too.

Keep Rand close. He is so vulnerable.

Love,
Connie

June 1, 2006
Day 123

Rand had a very hard day. Last night I thought he had a slight fever. This morning his blood pressure was so low that the RN decided not to give him his blood pressure medicine. He refused his shower and shaving this morning. This afternoon he started acting sick and again he was very warm. His BP had risen to a normal level, but he was lethargic, his eyes were dull, he had no interest in anything, didn't comprehend as much as usual. He was also in a lot of pain and I gave him a tougher than normal painkiller. I have not had a call tonight but will go over there first thing in the morning to see how he is doing. A friend came by and played Blackjack with him for a while this afternoon and he played along, but was quiet and not enjoying it as much as usual. I hope he doesn't have a bug, infection, virus, or something - then again, maybe I do, as that is very curable. Keep your fingers crossed and I'll keep you posted.

Hold Rand tight in your thoughts and prayers.

Love,
Connie