March, 2006

Rand’s Progress


March 1, 2006
Day 31

Today was clear, with blue skies, no rain, a bit chilly, but Rand and I went for a long walk. He wore the soft, blue sweater that my sister gave him and it was perfect in every way.

He did well with OT/PT therapy this morning and ate a big breakfast. He wasn't very hungry at lunch (could it be the chocolate malted milk shake that I brought??) but he was weighed and has gained a couple of pounds. All is well. He had some visitors today, which he enjoyed. I made a CD of some of his favorite songs, ones that he can sing along to, that have clear, enunciated words and bought a CD player with speakers so he and his speech therapist can hear the music together. The problem is, that she has never heard of the music that Rand knows!! YIKES! Now I have to go in search of the lyrics for Patsy Cline's "Walkin' After Midnight," "I Walk the Line," by Johnny Cash, "MTA," "Tom Dooley," "Tijuana Jail," by the Kingston Trio, "Oklahoma," etc. Uff da. Any suggestions? Web sites? Offers to come and sing with Rand?

Keep those cards and letters/emails coming. We love hearing from you.

Love,
Connie



March 2, 2006
Day 32

Day 32 was a step back into reality. All the things that I was told about Rand's condition the day or so after the stroke came back today. I had a talk with the doctor and was told again that Rand has lost at least 50% of his vision and what he does have is unknown and the damage is permanent. His ability to communicate may improve a bit in the next six months but will not come back. The only blood supply he has to his brain is via the right carotid artery and that is also partially clogged due to vascular disease. As that blood supply decreases, the brain cells on the right side are deprived of their ability to survive and consequently take over some of the functions of the badly damaged left side. I knew all this, but his progress has been so spectacular that I thought he was improving to the point that he could break out of this prison and come back - not totally, but in greater part than is realistic. Next week he will be evaluated by a vascular surgeon to assess his ability to withstand surgery on his right artery. The doctor and I agree that he is probably not able to endure that right now. Maybe somewhere down the line, but not now. The following week we have an appointment for Rand's assessment by a rehab physician who specializes in stroke patients. After that meeting I hope I have a clearer understanding and a realistic set of expectations for his progress and quality of life.

During therapy this afternoon they discovered that Rand's right shoulder joint and muscles have "slipped" from lack of use. His shoulder was drooping and I could see how the joint was falling. The therapists taped his muscles and joint so they will stay in place. His posture improved almost immediately although he is having pain in his right hand from lack of use. He is still having periods of paleness, shortness of breath and the appearance of being sick during therapy. His blood pressure and oxygen are monitored closely and are always with in the normal range. I wish we knew what was happening. He says he is not in pain but that he does feel sick. The doctor said that a heart attack and/or stroke are always a possibility with his vascular problems. This has been a very down day.

On the up side, Rand walked with assistance (3 therapists helping him), started learning how to dress himself, ate a big breakfast and enjoyed visits by several friends. The speech therapist worked with him on counting and the alphabet. He can count to 16 with help and hum the Alphabet Song, saying a few of the letters. They were starting in on the cd when I left this afternoon. I got all the lyrics from leoslyrics.com as suggested by my cousin. Nifty website seeing as she has never heard of The Kingston Trio, Don Ho, etc.!

Please keep Rand close to your hearts and in your prayers. A miracle just has to happen for him. . It just has to happen.

Love,
Connie



March 3, 2006
Day 33

Today Rand and I sang a lot together - oldies but goodies such as "Good Night Irene," "Pearly Shells," "Beautiful Savior," and a variety of children's songs. He can't say the words but boy, does he know the music! In a couple of places he stopped, waved his hand and said, "No! No!" when I got off on the wrong track. Yikes! He got us back in line and sang the verse the correct way! It was so good to see and hear him singing and knowing that he knew exactly what he was doing. The words escape him but he has the music nailed. It is one way that he can be in control of his environment.

I apologize for being so down in last night's update. I should keep my ejournal to myself when I am so sad and I will try not to do that again. Rand is in there, I know that he is in there, working so hard to burst out, to talk, to understand, to see and appreciate everyone and everything around him. I guess I project my wishes for his recovery onto every positive step he makes and I lose sight of the cold, hard facts of the reality of his condition. I look for miracles every step of the way, every minute, every hour of every day. When I get the slats kicked out from under us I don't handle it very well. I'll get tougher, I promise. My goal for this week to teach Rand how to hug again. He has a strong left arm but his knowledge of how to it has been reduced - it will be a tough job, but somebody has to do it!

Hold Rand tight in your thoughts and prayers. Thank you for being there for us.

Love,
Connie


March 4, 2006
Day 34

Today was a WHOOPIE Day! After a few days in the doldrums, today was magical. Rand ate a huge breakfast and a good lunch, we went for a walk, "supervised" the planting of a gazillion spring flowers around Vasona Creek's entrance, entertained some visitors, called his sister, sang a little bit and generally enjoyed the day. It was chilly but he had on his new sweater, a Minnesota seed cap, Vikings lap robe and was as snug as a bug.

This afternoon I could make out that Rand was asking about his email at home. I assured him that I was taking care of it, bringing him the messages from friends and not to worry as I had it under control. He smiled, looked at me and said, "And I'm sure you are probably doing a fine job." I went nuts! The sentence was clear as a bell, contained a three-syllable word, was totally appropriate, and perfectly enunciated, what could be better????? Yikes! Who said his speech wasn't coming back?? A short time later, he said, "What are you and Ann doing?" When I told him that my sister, Ann, had left a week ago, he expressed dismay and surprise with an "Oh, no!" But his thought and pronunciation were all clear as could be. He's in there - by golly, and he is coming back, no matter what the MRI says! Today he also focused on the details of an interesting ball that a friend gave him and he noticed changes in it as he squeezed it, plus he tried to "fix" some of the changes in the ball. He's paying attention to some details, he's listening and thinking, some planning is going on. All of it is short term, immediate responses, but it is only five weeks ago today that he had the stroke. Yikes - if everyone could be so lucky! He is also figuring out how to dismantle his wheelchair! Uff da. You can take the guy out of the hardware store, but you can't take the hardware store out of the guy. Fortunately, the leg supports are affixed in way that makes it difficult for him to remove - but he's working on it and I'm betting on Rand, not the wheelchair manufacturer!

Wheeee - I am so happy, so elated, so positive, so up beat. I'm as high tonight as I was low the other night. Thank you for your prayers and good thoughts - every piece is helping. Your visits, cards and emails are so important to both of us - keep them coming. Thanks, good friends.

Love,
Rand and Connie



March 5, 2006
Day 35

Today was soggy, dreary, grey, windy, a good day to snuggle up inside as the storm entered our fair city. Rand did just that - snuggled up in his Vikings quilt, wearing his Triangle Seed cap - we sat in the living room in front of the big windows, visited with friends and watched the rain come down. We had a quiet day, not much conversation, we listened to some music, Rand watched golf on TV while I knitted - just a little old couple in their dotage! Rand had OT/PT therapy this morning and was ready to doze off by 3:30. He is eating three good meals a day - pureed food - and his feeding tube intake has been reduced to 6 hours a day. WHOOPIE! The wound on his right hip still has not healed but it is getting better, little by little. It is very irritating and sore for him but he hates to lie on his side, which would help it heal faster.

We have a busy week ahead, full of appointments and meetings so it was good to have a quiet day today. If anyone is thinking of visiting Rand this week, Monday and Tuesday would be great as I won't be able to arrive until later in the afternoons and it would be nice for him to have some company. Thursday he will be taken to see the vascular surgeon in the early afternoon and I'm sure he will be worn out after that outing. Wednesday and Friday will be "normal" days.

Keep Rand close to your hearts.

Love,
Connie



March 6, 2006
Day 36

Today was much like yesterday. Rand had some visitors; we went for a walk before the rain started, he was very tired and asleep by 3:00. His right shoulder, arm and hand were very painful today - the therapists couldn't even touch him with out pain. The tape has come off his shoulder and will be retaped tomorrow.

Today Rand started eating almost regular food - no more pureed stuff! He ate fresh cooked broccoli, chunky potatoes and "mystery meat" with a white sauce over it for lunch. He fed himself with his left hand and only needed help with the slippery Jell-O! So now he is eating 3 squares a day of real food and only having the feeding tube for six hours a day - from 4:00 to 10:00 p.m.

Tomorrow (Tuesday) I won't be with him until 3:00 or so as I have several appointments, including an ultra-sound of my arteries, to take care of.

Keep the faith good friends - Rand is working so hard to come back.

Love,
Connie



Day 37
March 7, 2006

Today an aide came in and wheeled away the tube-feeding machine from Rand's bedside! YEA! Rand is now self-sustaining on three meals a day so no more drip system! The stomach plug will remain in place for some time as a way to deliver medications and additional food if necessary. He is comfortable with it so there is no need to remove it in the near future. He was weighed this afternoon and is maintaining his weight - at about 10 pounds less than before the stroke.

After that good news I probably had one of the hardest days of my life. This ejournal entry will be short as I'm typing and crying at the same time. This afternoon the doctor told me that next Tuesday Rand will be moved from the rehab unit to the custodial care section of Vasona Creek. He is not making the physical progress that he needs to make in order to continue in rehab. That means he will also be taken off the Vallejo Rehab track. Unless a miracle happens in the next few days and Rand makes remarkable progress, he will go onto a maintenance program delivered by rehab aides. That was a huge blow, but the one that knocked me for a loop was the prognosis that he will not be coming home. This was not the first time I had been told that, but I had such high hopes, such determination about his progress, I saw so many shining lights every day, I just knew that he would make it, that he would come home. This afternoon was about the fifth time I have been told about his limited chances for any kind of recovery and it was like being pounded into the ground again. I guess I have to start believing and dealing with the reality. I hate it, I just hate it but there is nothing I can do. Last week I said that Rand needed a miracle and now he needs one more than ever. The magic day is Monday, March 13, when the rehab physician evaluates him and he gives us his prognosis for the next six months. The future is so bleak. I can't write any more. Pray for Rand and a miracle.

Connie


March 8, 2006
Day 38

Yesterday was the hardest day of my life - I thought. Then today arrived. Without going into the details, Rand and I just hung on to each other and cried together this afternoon. It was spontaneous, we were so sad, so grief-stricken, in such despair, that words cannot describe our emotions. My sense that Rand understood our situation made my grief even more unbearable. We finally pulled ourselves together, went outside for some fresh air, cool water, a change of scenery and sunshine. I talked to him about his amazing progress, how proud he should be and I am of him, of how hard he is working, that this too shall pass and will get better and better. In retrospect, I don't think he really understood the situation, but he reacted to my emotions, he was also frustrated, sad, feeling out of control and he succumbed to the moment. I can't describe it - in one way it was the depths of despair and in another it was cathartic.

Enter the facility administrator. He told me that he had a bed for Rand in the long-term custodial care unit, that I should grab it and move him this afternoon as who knows when another space will become available. I had a list of questions prepared just for this scenario. He showed me the room, answered my questions, and to make a long story short, I basically told him what he could do with his bed! I will not accept a warehouse setting for Rand - period, end of story. Rand will stay right where he is until the matter of his future placement is resolved to my satisfaction. The whole issue is much more complicated, suffice it to say that the "interim" doctor has said that he is not making progress and therefore he is out of rehab. The therapists and I say that it is too early; he needs more time that he is making progress and will continue to make progress, that taking therapy away now is outrageous. The rubber will hit the road concerning his continued therapy next Tuesday. In the meantime, I am looking for referrals to a good lawyer who specializes in medical benefit claims, patient rights, etc. to have in my back pocket as I proceed with the appeal against the denial of benefits, should that be the outcome on Tuesday. I hope it will not come to that, but I want to have our ducks in a row just in case.

It never ceases to amaze me how "pissed off" can overcome grief and sadness every time! I can't fix "sad," but I sure can deal with "pissed!" My grief is now being channeled into constructive plans to launch an all out battle for Rand's continued therapy and that is energizing, reaffirming and satisfying - like I'm actually doing something that can make a difference for him. The best-case scenario is that the battle will not occur - that wise and compassionate heads will prevail and Rand's best interests will be served. Keep good thoughts and prayers for the hearts and minds of the decision makers.

Thank you for your wonderful caring thoughts, calls and emails, your on-going support, offers of help - always being there for us. The fact that I can bare our souls to you says a lot about my trust in you and your friendship.

Love,
Connie


March 9, 2006
Day 39

Today Rand and I went by wheelchair van to his appointment with the
vascular surgeon. Rand was tired after the outing but everything went
well. The surgeon ordered a CT scan to determine where the blockage is
in the left carotid artery and to see if he can operate. The doctor
said that Rand has a 30% chance of having another stroke within the
Next two years - it could be massive; it could be so small that it is
Not even noticed. If he can operate, remove the blockage and clean out
the artery, that chance will be reduced to 10%. The surgery will not
make Rand any better, he won't feel any better, it will simply increase
his chances of avoiding another stroke. The CT scan will take place in
about two weeks.

I spent the rest of the day with Rand, researching alternatives to his
current placement, the appeals process in case his continued therapy is
denied next week, holding and scheduling interviews, making
appointments, placing and receiving phone calls from agencies, resource
centers, gerontologists, when he dozed. No wonder the scarf I'm
knitting is not getting done! My files continue to grow with notes on
every conversation with every person, meeting, contact, list upon list,
agendas, email and web sites - on and on. What on earth do people in
this situation do if they don't have an advocate, don't speak the
language, can't access the system, aren't aggressive enough? It is too
scary to think about.

I have high hopes for the meetings on Monday and Tuesday. I hope that
I have been able to affect the decision so that Rand will have another
week in therapy, to be reviewed the following Tuesday and then another
week and another - maybe vascular surgery will intervene. The road
ahead continues to be filled with potholes, unimagined twists and turns
- some times the "what ifs" make it seem impossible and overwhelming.
But I have faith in Rand's ability to keep moving forward and that
keeps me moving forward too. Your faith, support and cheering from the
sidelines makes a huge difference. Thank you for continuing to be
there for us.

Love,
Connie



March 12, 2006
Days 40 and 41, Week Six

The days are beginning to run together - not for Rand and me, but the information I have to tell you is repetitive. Rand is being pushed very, very hard by the OT/PT/ST people six days a week. I think his progress is amazing but he is frustrated, in a lot of pain and, at times, wants to quit. The pain is from stretching and straining little used muscles; muscles that have started to atrophy, in his thighs, calves, along his sides and in his arms and shoulders, neck and back. His lack of spatial awareness causes him a great deal of fear and a feeling of being out of control when he has to bend over, roll, stand, turn, etc. The therapists are firm, kind and consistent and eventually he does what he needs to but he does not feel a sense of accomplishment. I don't know if he feels that what he is doing is so basic, so baby-ish, that he should be able to do it without a second thought or what. Sometimes I think I should stay away from his therapy sessions so he won't feel embarrassed. He doesn't want friends in the sessions but he always says it is OK for me to be there. A big part of the therapy issues are his inability to follow directions, to process language. He frequently does not understand what he is supposed to do which causes even more frustration. Needless to say, he is tired after therapy and often takes a nap.

Visitors continue to brighten his day and are so important. Rand loves to see people walk in the door and he can usually remember who has been to see him that day. Because his speech is not understandable, friends tend to talk to me and Rand zones out. Frequently I will leave the room for a few minutes when someone arrives just because it forces people to pay attention to Rand. Obviously, no one is ignoring him on purpose, but because conversation is not possible, it makes "visiting" difficult. When the dust settles around his therapy and placement, I'm thinking of putting together some activities that visitors can do with Rand that will reinforce his speech, cognition, dexterity, attention span, etc. and give a sense of purpose to a visit. Several teacher friends have volunteered to help put this project together. One friend is teaching him how to thumb wrestle! The warm-up activities that the ST uses help his speech - things like having him count slowly to 20 with you, to slowly recite the alphabet - no singing of the "Alphabet Song" because he hums along but won't say the letters! Singing simple songs " etc. is a great help too. Don't worry about your voice - Rand can carry you through any music! Sometimes if you remind him to slow down, more of his speech is understandable. Remember that the goal is for him to approximate words, not to pronounce them accurately and complete sentences are not necessary - it’s the thought that counts!

I've had good feedback on my Soap Box issue of having your carotid arteries checked. Thank you - you are too valuable to not be checked. My results came back today and my arteries are clean as a whistle! Isn't it amazing that Rand and I ate the same food for 42+ years, both come from families with vascular disease and Rand suffered but I didn’t?

Monday and Tuesday of this week are critical for Rand. Decisions will be made about him that will affect the rest of his life. I hope I have done the proper groundwork, lobbied hard enough, been firm and even intimidating at the right times, organized everything and not overlooked crucial steps and information. If "The Committee" decides on Tuesday to give him another week of therapy, I'll be the happiest person alive! Then I can start working on them to grant another week the following Tuesday. In the meantime, I'm looking at alternative placements for him for the long term.

Please keep Rand close to your hearts, in your thoughts and prayers, and include the doctors and decision-makers, too. They need all the compassion and wisdom they can possibly get.

Love,
Connie



March 12, 2006
Day 42

Today was a quiet day, even relaxing, as there was no therapy today. Even though it was overcast and raining off and on, we sat outside for awhile, sang a bit, counted, said the alphabet and then retreated inside to be warm and watch the rain come down. Rand had some visitors this morning, ate a big breakfast and lunch, smiled when I finally finished knitting the scarf, and enjoyed hearing my sister's voice on the phone.

This is going to be a watershed week. Tomorrow we meet with the physiatrist (rehab doctor) to get first hand information on Rand's potential. Tuesday is the meeting with the team who will decide about his continuing therapy, Wednesday I am touring a potential placement for Rand long term. Some good friends helped me write, rewrite, revise, the questions for the doctor tomorrow. The questions and points of discussion for the meeting on Tuesday will be written tomorrow evening. I will keep you informed of the progress, the outcomes, gut reactions, etc.

Thank you for keeping all of us in your thoughts and prayers. I am apprehensive about the days ahead, but I also have a positive attitude. How could anyone in their right mind deny Rand every chance in the world??

Love,
Connie



March 13, 2006
Day 43

Today was another roller-coaster day. Rand’s doctor at the rehab center met me and she told me that she had approved another week of therapy for him! WHOOPIE! That is all I've asked for - one more week, then maybe another, to keep his progress going. I was flying high and the Tuesday meeting is yet to come!!

This afternoon Rand was evaluated by a physiatrist (rehab doctor) and I was brought back to Earth and reality. He said that Rand is functioning at the low end of the spectrum, despite his amazing (my term) progress, and he sees his recovery potential as limited. He does not see Rand coming home, being able to communicate with speech, the written word or hand signals. His right brain will not be able to take over any of the functions of the left side. He said that the tears and depression that Rand exhibits goes with a stroke. He called it "inaccurate emotional response," and said that I cannot read anything into it. He does not know what Rand knows, what he thinks or feels and he said that Rand might not know either. He said that Rand does not see out of his right eye. He does not know how much he sees with his left eye, but anything on his right side could just as well be behind his back as he is not aware of it. If he hears noise off to the right, he will now turn his head and eyes to the right to see what is happening, but if there is no sound, then nothing on the right exists to him. His consistently appropriate social behavior (welcoming and saying goodbye to visitors, using a napkin at meals, being unfailingly polite, covering his mouth when he coughs, etc.) are learned responses and will stay with him like reflexes or involuntary muscle movements. The doctor prescribed some treatments for his right shoulder and said that the OT/PT has to keep pushing him hard, even to tears, because if they don't, his muscles will freeze up and once that happens, they can not be brought back. The same goes for his alertness - visitors and constant stimulation are critical to his continuing progress and/or maintenance. If his brain is not challenged, it will also become flaccid and ineffective.

Not much of the information today was new, in fact, this is at least the sixth time I've heard most of it. Each time I hear it I feel like I've been socked in the stomach, but each time the punch is a little less hard, I cry a little less and accept a little more. I still cannot accept that Rand's tears are not real tears of frustration, that he will not be able to communicate again, that we cannot enjoy mutually meaningful time together in the future. The doctor recommended that I stop going to see him every day - that I spend as much time away from him as I do with him. I can't do that. I can't even conceive of doing that.

Tomorrow is another day - the need for prayers, good thoughts, love, compassion for Rand is as strong as ever. Hold him close.

Love,
Connie



March 15, 2006
Day 45

Rand was in good spirits today and today was uneventful, calm and quiet. Thank goodness for that - we need one of those every once in awhile! Rand is now eating regular food, not chopped up, but he needs help cutting the meat and uncovering the dessert. He is eating well, feeding himself and is a member of the Clean Plate Club!

Visitors are always welcome and please come to see Rand whenever you have some time - no need to check in with me. Remember that his OT/PT/ST schedules vary day by day and there is no set time for them. Visiting him between 10:00 a.m and noon, 1:30 and 3:00 is usually best. He frequently takes a nap about 3:30 and dinner is served about 5:30. Visits between 4:00 and 5:00 can work out also.

There are a few guidelines I'd like you to remember when visiting Rand. Please do not go with him to therapy or observe him during that time. It is a private time when Rand is not always at his best and he is sensitive to that. Please do not talk to him about going home, or anything that might remind him of home. At this time he does not seem to remember the house, life as it was prior to January 28 and that is a blessing. The possibility of him returning home is dicey at best and the subject is best left alone for now.
Thanks.

Today a friend and I visited/toured another long-term care facility as a possible alternative placement for Rand, should/if the need arises. There will be more tours to come in the next couple of weeks as his future unfolds.

Thank you for another day of care and support, good friends. Hold Rand close in your hearts and prayers.

Love,
Connie



March 16, 2006
Day 46

Rand had another busy day filled with therapy sessions and visitors. The Occupational Therapist started working on having him use devices to put on his socks and shoes and he did well. He continues to feed himself three meals a day, even though it can be challenging at times. This was a productive week, an exciting and at times frustrating seven days. Both of us are enjoying the peace and quiet, the visits from friends, cards, phone calls and email. The only thing that could have made it better would be some sunshine, warm and dry weather - maybe next week we'll get that too.

Keep Rand close.

Love,
Connie


March 17, 2006
Day 47

Another quiet day passed, therapy went well, it poured rain again and even hailed - I think we've had 40 days and 40 nights of rain. We're in desperate need of spring weather.

Friends stopped by this afternoon just as Rand was going to therapy. I'm sorry that I did not make myself clear about Rand's schedule. He has about 2-3 hours of OT/PT/ST a day and the schedules are fluid and unpredictable. Frequently he has therapy in the morning, but not always. Until recently, the OT and PT worked together with Rand, but now they are working with him separately so that adds another piece to his day. I wish I could tell you when to visit and when not to, but I can't. The hours I suggested are only guidelines that avoid meals, showers, naps, etc. If he is not in the room, check at the Nurse's Station outside his door. They will know when he went to therapy and when he will be done. They will also know if I have taken Rand to the living room area or outside. Sometimes visitors come in the back door and miss us because we are near the main entrance. Please call me on my cell phone at (408) 460-0098, and maybe I can tell you what is happening. I usually get there around noon, so I can't tell you about the morning's schedule. Please do not schedule a visit for this Thursday, March 23, as Rand has a test at the hospital and will be gone most of the day. He will be exhausted when we return late in the afternoon.

Rand was in good spirits, ate corned beef and cabbage like he was an Irishman, enjoyed the bagpipers that strolled the halls and even received a watercolor rainbow/Randbow painted by a visiting pre-schooler!

Hold him tight in your hearts.

Love,
Connie



March 18, 2006
Day 48

Even though it was seven weeks ago today, there are still two placemats on the table, two coasters sit on the table between our chairs. Tonight I took a tour of the back yard noticing all the new buds on the trees, bushes that need pruning, pots that need planting, fertilizing that needs to be done. I laughed when I thought of telling Rand that I was going to start pruning - he always said that he got a headache when he saw me with a pruner in my hand. I do tend to go after plants with a vengeance. Then I cried.
Today Rand got a new wheelchair - a regular one in place of the large one with a high back. He no longer needs the extra support for his head and upper body, plus this one is lighter and easier to maneuver. I started showing him how to propel it by himself and he did wheel himself around a bit while I guided it from the back. He lost interest quickly - it is easier to be pushed by someone else. He has also figured out that I will feed him and that is easier than doing it himself so he waits for me to make him a member of the Clean Plate Club. I made chocolate chip cookies for him today and those he fed to himself. Hmmmmmm - go figure!

We finally had some sunshine and blue skies today so we sat outside for a while. Friends came to visit and that always brightens his day. He had hills and valleys today - some smiles, a few chuckles, some pain, sadness and frustration. I would give anything to know what is going on in his mind, what he is trying to say, where it hurts, how I can help, what he wants and needs. If I am frustrated, I can't even imagine his mental state after not being able to communicate for seven weeks. He did not have therapy today but will again tomorrow. He shook his head and said "No" when I told him. He won't give up, but I sure understand his desire to have it all go away for a while - it is hard, scary, painful, exhausting work.

Cards, emails and good wishes continue to arrive every day. Thank you - Rand enjoys every one and they are posted on his wall. He spent time today looking at each one over and over again. The days are very long for him. He listens to music, naps, tries to focus on things, deals with the pain of his shoulder problems, the wound on his right hip, the frustration of trying to talk, to understand, to get comfortable, of being totally dependent. Oh, how I wish I could help.

Keep Rand close in your hearts and prayers.

Love,
Connie



March 19, 2006
Day 49

Today was a difficult day. Rand was in a lot of pain on his left/strong side. He cannot tell us where he hurts, what kind of pain he is in, how we can help, etc. so it is a guessing game at best. He had physical therapy this morning while in bed. The therapist worked on muscles in his legs, thighs and trunk. The nurses and I can only surmise that his pain was from the stress of using muscles that are screaming in protest. He was given some Tylenol and will be evaluated by the doctors in the morning. He has been having some "episodes" of extreme pain periodically somewhere on his left side, usually in the afternoons. Today the RN took his blood pressure at the end of an episode and it was 90/70 - way too low. Ten minutes later it was 107/64, more in line with what is normal for him. It is scary and frustrating as I can't help him - I don't know how to help him. Is it muscles? Kidney stones? Gas? Another stroke? Oh, what I would give to understand and help.

Rand had a lot of visitors today and he was delighted to see everyone. He couldn't get out of bed and into his wheelchair to enjoy the sunshine, due to the pain. The rain is supposed to start again tomorrow and I hope Rand has a better day.

Yesterday as we were heading outside, we saw a group of kids in the living room of Vasona Creek and stopped to see what was going on. It turned out that it was about 25 sixth (?) graders from Fisher Middle School where Rand taught! They were doing volunteer work by visiting at Vasona. Rand was introduced to them and they gave him a spontaneous round of applause! What a joy that was! The sad thing is that Rand has no idea of what Fisher is, that he taught there, no memory of any of it. These kids were in kindergarten when Rand retired so they didn't know him either. But it meant a lot to me and I will keep telling him about it.

Hold Rand tight in your thoughts and prayers. He needs so much help, comfort and soothing. Pray for understanding of and relief from his pain, for the wisdom of his doctors, nurses and therapists, for Rand's solace and peace.

Love,
Connie

March 20, 2006
Day 50

This morning, as Rand was being groomed for the day, the aide noticed that his left ankle was swollen, red and tender. He has a severely sprained left ankle - hence the pain he was experiencing yesterday from his left foot and along his leg. Evidently, he twisted his foot/ankle while being moved but he doesn't remember anything about it. Will he ever be allowed to heal completely? How much does he have to endure? Now his one good leg is impaired for a period of time, much of his therapy will slow down and/or change while this heals. I just can't believe it. When he was in the hospital, trying to recover from the stroke, his right lung collapsed. This seems like a repeat. But then I have to remember that the collapsed lung bought us the needed time for a place for him to open up at Vasona Creek rehab center. Maybe this sprain will also buy extra time for the next step. He was discouraged, sad, in pain, miserable, most of the day.

Several friends came by today, which he loves, his speech therapy went well, and he perked up a bit late this afternoon. The doctor has prescribed a painkiller for him, which started this evening and should ensure a good night's sleep. She is being very conservative with it and is trying him on it for a week, as she does not want him "drugged." Amen!

This afternoon Rand had a cast made of his right leg so a brace can be made to help hold his foot in place when he walks. A special sling is also being made to hold his right shoulder in place and to support his arm and upper right side. It will take a couple of weeks for these items to be fabricated.

Tomorrow, Tuesday, we have another meeting with the department heads, etc., about Rand's progress. Our friend will be at the meeting to keep me on the straight and narrow, to ask questions and take notes. I have the agenda/questions typed and ready to go. I don't know what to expect from the meeting. All I know is that Rand will benefit from our presence. On Friday, another friend is arranging visits for us to some additional long-term care facilities for Rand. I'm afraid that I will need them sooner rather than later.

I am trying my darndest to keep my equilibrium in check, to keep my emotions in balance like I promised myself a couple of weeks ago. Rand is so sweet, has such a warm smile and tender touch, even when he is in pain and so discouraged. I know that his time in rehab is coming to an end in the near future, at least for now, and my next big task is to find a caring, stimulating place for him to live without me. I hate it. I just hate it.

Keep those good thoughts and prayers rolling over him.

Love,
Connie

March 21, 2006
Day 51

Rand had another busy day: therapy, visitors, he received a beautiful flower from a friend's garden, ate his favorite beef jerky, napped, had his ankle wrapped and iced, looked at some magazines, sang a bit, was lazy when allowed. In other words, it was a typical day for him. He was in good spirits, and the pain was under control.

We had the weekly meeting with the department heads and Rand was approved for another week of therapy. Whoopie! In the next couple of days we should know the status of his application to the super-duper rehab facility in Vallejo. The fellow from the orthopedic appliance company that is making Rand's leg brace and shoulder sling/brace called this morning and the shoulder piece should be here by the end of the week! Wheeee! I'm so anxious to see how much it helps him. The therapists taped his shoulder muscles again today to tied him over for the next few days. The leg brace will take a couple of weeks to be fabricated. It is way past time for Rand to have good news, good support, and no pain.

On Friday a friend and I will be visiting another long-term care facility as a possible place for Rand. Rand will stay right where he is until I can find an acceptable placement for him. I will not move him around. The unknowns continue to pile up. It seems that as soon as I am clear on one area, three more questions pop up that can't be answered. Uff da. I must be patient.

Thank you for your concerns about my health and well-being. Good friends invited me out for dinner tonight and it was such a treat. I'm getting a cold, which makes me mad, but then, maybe it is just allergies and will be gone soon. I did have some fun today - I went shopping and bought some new shoes! Whoopie! Now I have to hit the sack and rest my cold/allergy/nose/throat.

Wrap Rand in your good thoughts and prayers for another pain-free day, some sunshine and small pleasures.

Love,
Connie


March 22, 2006
Day 52

Rand had a long, hard day today. He was sad, depressed and fed up. He had three "episodes" during therapy this morning so they had to stop working with him. He pulled the tape off his shoulder muscles this morning, tearing his skin again. I was very late in arriving at Vasona Creek as I fell asleep in the chair at home late this morning while reading yesterday's mail. Guess I'm not sleeping as well as I thought, plus I have a cold and have lost my voice. Uff da. I think someone told me that I should take care of myself. Gotta do that but I thought I was.

Tomorrow/Thursday is going to be a long, tiring day. Rand will have blood work done at Vasona in the morning to determine if his episodes are related to an infection or virus, then he will have his ankle x-rayed to be sure that it is a sprain and not a break. He will have an early lunch and at 12:15 p.m. we will be off to the hospital in the wheelchair van. At 1:00 Rand has another blood draw, at 1:30 I will give him a Valium and then another Valium at 2:00 p.m. At 2:30 he has the CT scan to determine where the blockage is in the left carotid artery and if it is operable. We will be back at Vasona by 4:30 or so and Rand will be exhausted. I would hope that we would have the results of the CT scan early next week.

I am a bit apprehensive about handling Rand tomorrow through all of this, especially when he is sedated. But, I've heard that there are nurses at the hospital (!) who can help if I need it. I will be taking him in a wheelchair with a reclining back so he won't slump forward when asleep, plus I've asked to take along a restraint, just in case. Our faithful driver, Oscar, will be there to help also. We'll do just fine, I'm sure.
Some new placement possibilities for Rand are opening up and I'm excited about them! I'm afraid that I'm putting all my eggs in one basket so I'll wait to record my thoughts until I have seen the facility on Friday. Keep your fingers crossed that the situation is as good as it sounds and that it is a perfect fit for Rand.

Tuck Rand into your mind, prayers and thoughts tonight. He needs peace, comfort and soothing.

Love,
Connie


March 23, 2006
Day 53

Rand was a real trooper today in spite of his fatigue, boredom and discomfort. The CT scan went without a hitch and we'll have the results on Monday or Tuesday. Rand had two blood draws today, an x-ray on his ankle, plus the Valium to get him through the CT scan, on top of everything else. He was one pooped puppy tonight.

Tomorrow Rand gets his shoulder/arm brace/sling. The therapists will try two or three to find just the right one. I have several meetings tomorrow with potential long-term caregivers and with his doctor, plus two tours of nursing facilities. It will be another long day.

The last two days have brought nice weather. This afternoon Rand and I walked the medical center campus, enjoying the sunshine, watching the workmen who are doing remodeling work. It is supposed to start raining again tomorrow - a few of us are ready to start building an Ark!

My hopes are pinned on one special place for Rand that we will investigate tomorrow. Keep good thoughts that they will take someone who is so sweet, thoughtful and kind, even though he needs so much help to get through each day. Rand deserves every ounce of support in the world. Keep your fingers crossed for him.

Love,
Connie




March 25, 2006
Days 54 and 55

Rand was very tired yesterday (Friday) after all the stress of Thursday. He was fitted for his shoulder/arm sling and it seems to work well and to be comfortable. The leg brace will arrive this coming week so I have to go shoe shopping for him. The new shoes have to be a size larger than normal, be a wide width and have a tall and wide toe box - all to accommodate the brace. His left shoe will be fitted with something to take up the extra space and still make taking steps comfortable and normal.

Yesterday a friend and I visited four more nursing homes as possible placements for Rand. After talking to his doctor on Friday, he will have two more weeks of therapy - whoopie! I fought hard for one more week, hoping for two, knowing that three would be a gift. Well, we have surpassed three weeks and we still have a ways to go. It looks like April 4 may be the cut off date. I can't argue with the fairness of that. Rand's progress is steady but very small. His application is still in at Vallejo and we might hear something about it this week. Now with his sprained ankle, his therapy has changed and slowed. He is back to needing two people to move him. He had been down to one person. All of this makes a difference to the nursing homes also. I have found three placements that are acceptable, two of which do not have openings and one may not take him because of the amount of care and supervision he requires. Obviously, I might not have a choice. Time will tell.

Today Rand was upbeat and smiling. I fed him lunch, read some cards to him before I left. A friend went with me to the SJ Rep Theater this afternoon and then out for dinner. Last night good friends also took me out for dinner - yikes, am I getting spoiled! I have a full blown, nasty cold so I don't want to hang out around Rand or others at Vasona Creek right now. We have had some sunshine the last couple of days accompanied by a cold biting wind - the rains are supposed to start up again tomorrow.

I'm bushed. I'm so tired that I fell asleep in the play, even with the LOUD emoting of the actors!! Uff da - that is not like me.

Hold Rand tight.

Love,
Connie


March 26, 2006
Day 56

Never in my life have I been so exhausted. I've been bone-tired many times before, but nothing like this. I slept for 18 hours today. At noon I realized that I was so tired that I couldn't even drive a car so I called the nurses' station and left a message for Rand that I would see him on Monday. Then I went back to bed and slept some more. I have been up for three hours now and can't wait to go back to sleep! I did iron the sheets and pillowcases with lavender linen water today so I accomplished something. (You can't imagine the grief I've taken about revealing that little Helen Homemaker secret!!)

So many of you have told me that I have to take care of myself and I thought I was. Well, I was wrong. I know that this miserable cold has taken its toll but this level of exhaustion is way beyond that. This was my first day away from the hospital in 55 days; my first day to do nothing but what I needed to do, which was to sleep; to sleep so soundly that I didn't even think of Rand, I didn't dream or even have nightmares about him. Friends went to see him today and he didn't miss me - time runs together for him. That is good to know as I need to take more time away from him in order to keep myself healthy and my life in perspective. Listen to me - I sound like I actually know what I'm talking about! Uff da!

We have had blue skies, puffy clouds and a biting cold wind the last several days. The storms are supposed to start again tomorrow and last well into the week.

Tomorrow reality returns and I will be with Rand most of the day. I have to find the special shoes needed for his leg brace which will arrive this week. Maybe I can do that in the morning. I sure hope I get slept out by then!

Thank you for keeping Rand so close to your hearts and in your prayers.

Love,
Connie


March 27, 2006
Day 56

Today was another cold, rainy, windy miserable day in Northern California. Rand and I watched the rain while sitting in the lobby in front of the big windows and from the window in his room. Despite the rotten weather, Rand was in good spirits. He had therapy this morning so we had the afternoon to ourselves. I brought my "Traveling Beauty Shoppe" along and trimmed Rand's mustache clipped and filed his nails. Goodness, but they grow fast! Nothing new happened, no earth-shattering news to report. I bought Rand's new shoes today and will pick them up at noon on Tuesday. I will be talking with the doctor, the case manager and the social worker tomorrow. Maybe by this time tomorrow night I will have something new to tell you.

No news is good news. Keep Rand close to your hearts. His new half-smile is soooooooooooo cute!

Love,
Connie

PS: I should have kept you up to date on Rand's roommate the last couple of weeks! What a doozie he was! Rand, his CVN and I just rolled our eyes at his antics. Uff da. Now his roommate is a quiet fellow who puts a towel over his head and sleeps during the day. Very boring but nice to have so much peace.



March 28, 2006
Day 57

WHOOPIE! Break out what ever you use to celebrate and toast Rand!! This afternoon we got the word that Rand has been accepted at Vallejo Rehab Center!! This is a dream of 56 days come true! I had given up on this wish ever coming true - yet here it is, plain as day. WHEEEEEE! We will be notified about 24 hours in advance of his needing to be there and that notice could come in the next day, week or month. Usually the wait for a space is 2-3 weeks. Until the time Rand leaves for Vallejo, he will remain at Vasona Creek and receive six days a week of therapy. I am sooooooo happy I can hardly stand myself!! Once there, he will remain in residence at Vallejo for another 2-3 weeks, getting heavy-duty therapy every day. What happens after that is still up in the air. That is six weeks away and the road he has trod in the last six weeks makes me think that he is Superman and who knows what he can do in the next six weeks. His progress is not a straight, smooth shot at a 45o angle - it has twists and turns, scary woods and sunny plains. Rand needs a lot of good thoughts and prayers before he joins the Vallejo group. On top of that good news, I learned that Valley Medical in our area also has a Vallejo Rehab branch closer to home. However, it only has two contracted beds. Rand will go to whichever facility as a bed open first. One more bit of good news is that Rand is now getting all of his meds by mouth. The feeding tube is now redundant! The doctor wants to leave it in place for another three months or so just in case. That's fine with me!

This afternoon Rand was more alert than he has been for a while. He chatted with friends, had a good sense of humor, talked a blue streak and enjoyed his time with everyone. He also had five more "episodes" of severe pain, blood pressure fluctuations, paleness, this afternoon in a short period of time. I wish he could tell us what is happening. His sprained ankle is healing nicely and is no longer painful. The shoulder brace and arm sling are also doing the job. I hope the leg brace will be here in a couple of days.

Give yourselves a kiss, hug and a big pat on the back from us for your part in this grand new turn of events. Your thoughts, prayers, cards, email, visits and encouragement came through with flying colors!

Keep holding Rand close.

Love,
Connie



March 29, 2006
Day 58

This was such a busy day that Rand and I had very little time together, even though we were in the same building. The owner/RN of the home I am seriously considering for Rand's placement, arrived at noon to do an evaluation of him. She spent over two hours with him during lunch, down time and during therapy. I was afraid that he would be too much for her and her staff as all the others in the home are ambulatory, no wheelchairs, etc. It turns out that she thinks he'll be a good fit. Once again I am thrilled! There are details to be worked out but this could be the best of all worlds for Rand. Keep your fingers crossed.

Rand was in good spirits again today, buoyed by the celebrations of yesterday afternoon. Today I got some more details on his move to Vallejo and left him in the capable hands of the speech therapist. Tomorrow I will begin downsizing the things in his room so we can vacate in a hurry when the call comes. Vallejo usually gives 24 hours or less, notice that he has to be there, so it is a last minute scramble to pack, make transportation arrangements, and be outa there. I am told that the usual wait time is 2-3 weeks but the call could come at any time. You know me - Ms. Organization!

Keep Rand tight in your hearts and prayers.

Love,
Connie




March 30, 2006
Day 59

When it rains - it pours! Today at 3:00 p.m. I got a call saying that Rand needs to be in Vallejo at 11:00 a.m. tomorrow, Friday morning! YIKES! There was no time to make arrangements for much of anything, so I am driving him to the Vallejo Rehab Center in the morning. The therapists at Vasona Creek will transfer him into the car and the Vallejo staff will transfer him out, into a wheel chair and away they go! I'm still in shock. At 3:05 this afternoon I was madly tearing cards off the walls, stuffing clothes into bags, rounding up toiletries, throwing stuff out, trying to explain the situation to Rand, to make some critical phone calls and head off to a party! Uff da! I did get everything stuffed into every nook and cranny in Skippy, my VW Bug, including the most wonderful "Care Package/Basket" put together by a bunch of my former staff at Rosemary School - it contains of essential goodies like wine, chocolate, soft pillows, candles, all the makings for chocolate chip cookies, did I mention wine? And wonderful cards. What a special group of people!

Thank you to everyone who offered to drive with us to Vallejo, but it sure didn't work as I had planned! You are off the hook and I appreciate your offers. Opportunity may knock again!

As I'm typing this, I am also trying to prioritize the tasks for this evening. I have to pack for Rand and for myself. I just ran down and got gas on the car, I have to find and make reservations at a hotel/motel close to the hospital as I will stay there for at least one, probably two nights right off the bat. The house and yard will pretty much take care of themselves, I have to locate maps, and probably, most important - I have to sit down with a glass of wine, relax, think things through, then get a good night's sleep.

Rand will be evaluated by OT/PT/SP over the next couple of days and then away they go. His progress will be evaluated each week and a decision will be made whether or not to keep him another week. If he continues to make progress, then he could be there for three weeks or more. Most likely, he will be in Vallejo for 1-3 weeks. The therapy is intense, with long grueling hours. There is very little time for visitors - only from 5:00 p.m. to 8:00 p.m. He will be in a four-man room with a phone and TV, but I bet he will be asleep most of the time. I don't know how long I will stay after the first few days - three days a week? Five days? I'll play my schedule by ear. I'll bring our laptop along in case there is Internet access close by, so you may or may not hear from me. My cell phone will be on and you can reach me at (408) 460- 0098.

This is WHOOPIE - UFF DA - YIKES - all rolled into one feeling. On one hand I'm so happy for Rand, on the other I'm so protective of him and want him to have the best, worrying that he isn't ready for this, that he would be better off in another week or two. But that isn't a choice so we will do the best we can with the choice at hand. Keep him tight in your thoughts and prayers as he moves into new territory, is scared and unsure. Plus he is going to hurt physically, like he's never hurt before, is going to be pushed beyond his limits as he sees them, will be frustrated, angry and in despair every day. I'll be there for him every step of the way, but he has to do this alone. Will this journey ever get easier for him?

Hold Rand close in your hearts - he needs all the support and encouragement he can get.

Love,
Connie

March 31, 2006
Day 60

The trip to Vallejo went smoothly and only took about 90 min. The rain held off until we arrived which was a blessing. Rand was quiet during the trip, preferring to remove his shoulder brace and sling to talking or listening to music. He worked hard and consistently on the thing until he finally dismantled it and threw it in the back seat. He was taken to his room, ate lunch, napped, was evaluated by the doctor later this afternoon and was being taken for a series of tests when I left about 5:00 p.m. He was settled, calm and not nervous after the familiar tests began - BP, temp., oxygen, reflexes etc. I am soooooooooooooooooooo glad that I have a wonderful room waiting for his return. Who knows, maybe in the near future he can move home.

Rand is at Kaiser Permanente Rehabilitation Hospital, 975 Sereno Dr., Vallejo, CA 94589 and the phone number is (707) 651-2311. He does not have a phone in his room, so that number will reach the nurse’s station. The best way to get hold of him is to call me on my cell phone at (707) 460-0098. He is in room 306, bed B.

I am typing this on my laptop in the hotel room at the Holiday Inn, 1000 Fairgrounds RD., Vallejo, 94589, (707) 644-1200. If you need more info, please let me know. One week at a time is about all he can handle. I will be driving home on Sunday.

Tomorrow I'll have a better notion of how things are going and will keep you posted. Got'a run, hit the sack etc. Please forward this to others who are interested in Rand's progress. I don't have the complete list on this computer Address book along, so forwarding this mail to everyone will be a big help to me. Think good thoughts about Rand and the therapy that begins in the morning.
Love,
Connie