June 19, 2010
Tomorrow morning, Sunday, June 20, at 7:00 a.m., Rand, Thuan, his wife Tina and their eleven-year-old daughter Cindy and I, leave for the airport to fly to Seattle and start our cruise to Alaska. Sometimes I thought this day would never arrive – other days I hoped it wouldn’t! I have learned so much about Rand, traveling with a handicapped person, rules, regs, potholes in the system, stumbling blocks of all kinds and companies that actually know what they are doing. This trip has been planned and executed much like a military invasion! Rand, Thuan and I have taken two “dry run” trips to Reno for the purpose of finding out how the systems work, how to prepare for all phases of a trip with Rand, including hotel rooms, restrooms, airline procedures and seating, security screening, arranging for shuttles with hydraulic lifts, loaner electric wheelchairs, restaurant table placement, and on and on and on. Through it all, Rand has been a trooper and kept a positive attitude, not always true of “The Wife!” Some areas operate like a well-oiled machine such as the airlines. Other areas are chaotic and just plain unsafe – like shuttle buses with drivers who have never used a handicapped vehicle before.
I was amazed that it took one hour to get Rand through the airport security check the first time. Thuan and I got it down to 30 minutes by the last time through when we planned out a system. We have to remove Rand's usual items: shoes, belt, watch, etc, and then we have to take off all of his braces and send them. along with his cane, through the scanning device. He then is rolled into the security area; he is wanded and then patted down. After that his wheelchair is gone over with a fine-toothed comb, as is his cane. Thuan and I then go through security and get ourselves back together and wait for Rand on the other side where we “reassemble” him and his equipment. We think that 30 minutes is good time and are proud of all three of us for cutting so much time off the process.
Earlier this week I brought one large (30 inch) suitcase and one small one to Rand’s room so Ariel and Thuan could pack the things on my list for him. Yesterday I got a call saying that the small suitcase was waaaaayyyyy too small! So I took another large one over to his house and they filled it to the brim. YIKES! I also took a luggage scale along so we can keep the weights under 50 pounds. It isn’t that Rand is going to be a fashion plate on this trip it is just that he is high maintenance and requires a lot of supplies. I don’t plan on having any of the closet or drawer space in our stateroom!
Speaking of that, our stateroom is handicap accessible and has a veranda. Thuan and his family are right across the hall from us. Unfortunately, the weather prediction is for cool weather and lots of rain all along the Alaska coastline next week. I hope we have some sun – I’m packing a bathing suit just in case. Rand is taking my Antarctica parka as he is always so cold. I knit all of us hats to wear and we will be a sight to behold!
I finally solved the dilemma of how to transport Rand’s electric wheelchair to and from the ship. You wouldn’t believe all the different ways there are to do that and you sure wouldn’t believe the costs involved! I finally found a company in Seattle that rents electric wheelchairs and bed rails to passengers on cruise lines. What a relief!! Both of those items will be waiting for us in our stateroom tomorrow – knock on wood.
Since the last blog posting, Rand has had an artery scan and there is no change in the plaque build up since his stroke. His blood clotting rate is normal and not fluctuating like it has in the past. WHOOPIE! He still has a blood draw every month to check on it. He continues to have physical therapy every three weeks and Thuan works with him five days a week. He can walk considerable distances on smooth surfaces by himself but with someone hovering next to him, just in case. I think his speech is improving a bit, but I’m biased. He will never be able to carry on a conversation but he is adding new words to his vocabulary now and again. I credit his weekly music therapy sessions for improving his confidence, vocabulary and comprehension. Emily, the therapist is wonderful! Rand also took golf lessons again this spring and thoroughly enjoyed it.
Is Rand excited about the cruise you ask? Well, that depends. Rand only lives in the moment. He does not remember what happened earlier in the day and can not anticipate the future, so he doesn’t/can’t think about the cruise that is coming up. When I ask him about it, he either smiles and says “yes,” or he looks blank and says “no” because he doesn’t understand what I’m talking about. I’m anxious to see what he remembers, retains, enjoys, etc. about the whole adventure.
A full report will follow with pictures!
Keep Rand close to your hearts.
Love, Connie
Saturday, June 19, 2010
Monday, February 01, 2010
January 31, 2010
Dear Family and Friends,
Three days ago, January 28, was the fourth anniversary of Rand’s stroke. I can’t believe how fast the time has gone, and how much progress he has made. Rand was aware of the date and we talked about the event that changed both of our lives. An update on Rand is over due.
About four years ago today, the doctors told me that Rand would never walk again. Today he walks every day under Thuan’s supervision. He has physical therapy once a month and is doing unbelievable things. At each session he starts out by walking “the circuit” throughout the PT unit with Laura, the PT, and Thuan. Something over a year ago it took Rand 17 minutes and 30 seconds to walk the circuit. Last week he did it in five minutes and 53 seconds! He never gives up, never complains, just smiles and keeps on going. After that routine he has a few minutes rest and then Laura ties his legs together with an elastic band and he stands by the parallel bars. He kicks each leg out to the side ten times and then walks sideways along the bar to one end and back to the other. Then he kicks each leg back at an angle ten times and walks the bar again. Remember that the band hobbles his legs and his left leg is paralyzed. All in all, he kicks each leg in each direction 100 times and walks the bar ten times. By the end of the session he is tired but still smiling! I’ve tried to keep up with him in the kicking and sideways walking but I can’t do it! He is a wonder.
Rand’s speech is improving but it is still problematic. He has music therapy every week and I think that has helped him more than all the speech therapy of the last few years. His pronunciation, syntax and vocabulary are improving although it is still extremely difficult for him to make his wants and needs known. Every once in awhile he will form a simple, complete sentence and I don’t think he even realizes it. I suspect he knows exactly what he wants to say and when it comes out that way I am surprised but he isn’t!
His awareness of the world around him has improved dramatically as has his comprehension of the spoken word. Last week, Ariel, his main caregiver, asked him how old he would be on his next birthday. Rand counted out loud on his fingers to seven. Ariel said “8, 9” and Rand said “No!” He looked at me and I put one finger up and Rand said triumphantly, “Seven and one!!” He was exactly right – he will be seventy-one on February 24. That is the first time since his stroke that he has either known or been able to communicate that information. I was whooping and clapping!
Even though Rand can only count to ten, cannot add or subtract and numbers mean very little to him, he can clean your clock in Blackjack and Solitaire! A dear friend comes over every weekend to play Blackjack and most often Rand wins. They will play twenty or more hands and Geoff gets taken to the cleaners! Rand plays Solitaire during the day and he and I play Solitaire every afternoon for an hour or more. When a friend started reteaching him how to play a couple of months after his stroke, he couldn’t tell the difference between the suits or the colors of the cards, let alone the numbers and their sequence. Now he plays quite well – I think he wins too frequently when he plays alone! I wouldn’t say he cheats, but he does get confused at times and somehow manages to win under odd deals of the cards! He forgets if the red five goes on the black four or vice versa. He is meticulous in the neatness of the cards. Each pile must be lined up perfectly, the aces on top must have their logos facing the proper direction and nothing must be messy or out of alignment. He will stop playing frequently to straighten out all the cards. When he wins, he lines the suits up neatly at the edge of the table so he can admire them before carefully putting them back in the box. The perfectly arranged boxes are not used again until all seven decks of cards are in order via winning hands. Then he will start with the first deck, shuffle it in his electric card shuffler and start again. He never tires of playing cards.
In early December, Thuan, Rand and I went on the first of several overnight trips in preparation for the cruise to Alaska in June. Rand was absolutely ecstatic about staying in a hotel! He laughed and whooped, giggled, grinned and drove around the room again and again, smiling to beat the band! He was thrilled and the happiest I have ever seen him. The change of scenery and routine were the best things that ever happened to him! I thought I knew the routine Rand went through each day, but I was unprepared. It was like a military invasion! Thuan and I each had a small overnight bag but Rand had a big suitcase full of clothes and supplies. The back of the van was piled high with pillows, braces, bed rails, canes, food, coolers, you name it. Thuan came in at 7:00 a.m. the next morning to get Rand ready for the day and that process took two hours. The food was for Rand to eat when he took his first batch of medications before breakfast. There were several changes of clothes, just in case, jackets, sweatshirts and sweaters as Rand is always chilly. We are going over night again on Valentine’s Day and this time we will try to pare down the amount of things we take. We have to be mean and lean when we get on that plane for Seattle on June 20!
Rand bowls every Tuesday afternoon and will start an Adaptive Golf series in April. He joins me at the bowling alley now and again to watch his friends bowl in the weekly league. He cheers for each spare and strike we make, puts the team envelopes in order, has a beer and a great time. The weather has been so cold and rainy that he hasn’t wanted to venture out much since Christmas.
In November Rand agreed to donate Max, the speech-generating device, back to the hospital that helped us get it in the first place. The speech therapist had a child who could use it and that was a perfect solution. Max has not been missed but I’m so glad that we went through all the grief to get the grant and give it the old college try. I would never have been satisfied if we hadn’t done that. If Rand could have someone by his side at all times, prompting him on its use, it might have worked. Without that, there was no way he could make use or sense of it.
There is one more thing that you should know. For many, many months I have struggled with the idea of bringing Rand home to live, with the help of a 24-hour caregiver living with us. I have talked to doctors, therapists, caregivers, geriatric consultants, friends, family and to myself. I have debated the wisdom of making that move, I have made lists upon lists of pros and cons for both Rand and me. I feel strongly both ways. I want Rand home but I also need to think of myself. I would become his second caregiver; my time and house would no longer be mine/ours. Rand’s and my life together has changed forever and even through he has made so much progress, I have decided that I can’t do it and I don’t think it is in Rand’s best interest either. For as far as he has come in the last four years, he is still totally dependant, he is like a child in many ways. He cannot initiate anything including help that he needs. He can’t figure out that he needs a Kleenex when his nose runs, the water in his glass when he is thirsty, or the snacks on his table to eat when he is hungry. He watches the world go by through his big window onto the street, he watches TV or plays Solitaire. Sometimes, if I call his attention to them, he will page though some magazines such as Sports Illustrated and Time. He cannot remember that he has cards, books and letters to look at. He can not take the initiative to use the pens, paints, markers, and paper that are always handy, to put a puzzle together, to do any or all of the other activities that are available to him. His world is very small and very compartmentalized. Maybe that is how he handles life now, how he controls his environment. At least for the foreseeable future, we will continue to spend several hours a day together but live in separate houses. I don’t know if my decision is right, is selfish, is something I will regret or is the best for both of us. I revisit the decision often and, who knows, maybe I will change my mind someday.
Keep Rand close to you hearts and in your thoughts and prayers. He is truly a remarkable man.
Love,
Connie
Three days ago, January 28, was the fourth anniversary of Rand’s stroke. I can’t believe how fast the time has gone, and how much progress he has made. Rand was aware of the date and we talked about the event that changed both of our lives. An update on Rand is over due.
About four years ago today, the doctors told me that Rand would never walk again. Today he walks every day under Thuan’s supervision. He has physical therapy once a month and is doing unbelievable things. At each session he starts out by walking “the circuit” throughout the PT unit with Laura, the PT, and Thuan. Something over a year ago it took Rand 17 minutes and 30 seconds to walk the circuit. Last week he did it in five minutes and 53 seconds! He never gives up, never complains, just smiles and keeps on going. After that routine he has a few minutes rest and then Laura ties his legs together with an elastic band and he stands by the parallel bars. He kicks each leg out to the side ten times and then walks sideways along the bar to one end and back to the other. Then he kicks each leg back at an angle ten times and walks the bar again. Remember that the band hobbles his legs and his left leg is paralyzed. All in all, he kicks each leg in each direction 100 times and walks the bar ten times. By the end of the session he is tired but still smiling! I’ve tried to keep up with him in the kicking and sideways walking but I can’t do it! He is a wonder.
Rand’s speech is improving but it is still problematic. He has music therapy every week and I think that has helped him more than all the speech therapy of the last few years. His pronunciation, syntax and vocabulary are improving although it is still extremely difficult for him to make his wants and needs known. Every once in awhile he will form a simple, complete sentence and I don’t think he even realizes it. I suspect he knows exactly what he wants to say and when it comes out that way I am surprised but he isn’t!
His awareness of the world around him has improved dramatically as has his comprehension of the spoken word. Last week, Ariel, his main caregiver, asked him how old he would be on his next birthday. Rand counted out loud on his fingers to seven. Ariel said “8, 9” and Rand said “No!” He looked at me and I put one finger up and Rand said triumphantly, “Seven and one!!” He was exactly right – he will be seventy-one on February 24. That is the first time since his stroke that he has either known or been able to communicate that information. I was whooping and clapping!
Even though Rand can only count to ten, cannot add or subtract and numbers mean very little to him, he can clean your clock in Blackjack and Solitaire! A dear friend comes over every weekend to play Blackjack and most often Rand wins. They will play twenty or more hands and Geoff gets taken to the cleaners! Rand plays Solitaire during the day and he and I play Solitaire every afternoon for an hour or more. When a friend started reteaching him how to play a couple of months after his stroke, he couldn’t tell the difference between the suits or the colors of the cards, let alone the numbers and their sequence. Now he plays quite well – I think he wins too frequently when he plays alone! I wouldn’t say he cheats, but he does get confused at times and somehow manages to win under odd deals of the cards! He forgets if the red five goes on the black four or vice versa. He is meticulous in the neatness of the cards. Each pile must be lined up perfectly, the aces on top must have their logos facing the proper direction and nothing must be messy or out of alignment. He will stop playing frequently to straighten out all the cards. When he wins, he lines the suits up neatly at the edge of the table so he can admire them before carefully putting them back in the box. The perfectly arranged boxes are not used again until all seven decks of cards are in order via winning hands. Then he will start with the first deck, shuffle it in his electric card shuffler and start again. He never tires of playing cards.
In early December, Thuan, Rand and I went on the first of several overnight trips in preparation for the cruise to Alaska in June. Rand was absolutely ecstatic about staying in a hotel! He laughed and whooped, giggled, grinned and drove around the room again and again, smiling to beat the band! He was thrilled and the happiest I have ever seen him. The change of scenery and routine were the best things that ever happened to him! I thought I knew the routine Rand went through each day, but I was unprepared. It was like a military invasion! Thuan and I each had a small overnight bag but Rand had a big suitcase full of clothes and supplies. The back of the van was piled high with pillows, braces, bed rails, canes, food, coolers, you name it. Thuan came in at 7:00 a.m. the next morning to get Rand ready for the day and that process took two hours. The food was for Rand to eat when he took his first batch of medications before breakfast. There were several changes of clothes, just in case, jackets, sweatshirts and sweaters as Rand is always chilly. We are going over night again on Valentine’s Day and this time we will try to pare down the amount of things we take. We have to be mean and lean when we get on that plane for Seattle on June 20!
Rand bowls every Tuesday afternoon and will start an Adaptive Golf series in April. He joins me at the bowling alley now and again to watch his friends bowl in the weekly league. He cheers for each spare and strike we make, puts the team envelopes in order, has a beer and a great time. The weather has been so cold and rainy that he hasn’t wanted to venture out much since Christmas.
In November Rand agreed to donate Max, the speech-generating device, back to the hospital that helped us get it in the first place. The speech therapist had a child who could use it and that was a perfect solution. Max has not been missed but I’m so glad that we went through all the grief to get the grant and give it the old college try. I would never have been satisfied if we hadn’t done that. If Rand could have someone by his side at all times, prompting him on its use, it might have worked. Without that, there was no way he could make use or sense of it.
There is one more thing that you should know. For many, many months I have struggled with the idea of bringing Rand home to live, with the help of a 24-hour caregiver living with us. I have talked to doctors, therapists, caregivers, geriatric consultants, friends, family and to myself. I have debated the wisdom of making that move, I have made lists upon lists of pros and cons for both Rand and me. I feel strongly both ways. I want Rand home but I also need to think of myself. I would become his second caregiver; my time and house would no longer be mine/ours. Rand’s and my life together has changed forever and even through he has made so much progress, I have decided that I can’t do it and I don’t think it is in Rand’s best interest either. For as far as he has come in the last four years, he is still totally dependant, he is like a child in many ways. He cannot initiate anything including help that he needs. He can’t figure out that he needs a Kleenex when his nose runs, the water in his glass when he is thirsty, or the snacks on his table to eat when he is hungry. He watches the world go by through his big window onto the street, he watches TV or plays Solitaire. Sometimes, if I call his attention to them, he will page though some magazines such as Sports Illustrated and Time. He cannot remember that he has cards, books and letters to look at. He can not take the initiative to use the pens, paints, markers, and paper that are always handy, to put a puzzle together, to do any or all of the other activities that are available to him. His world is very small and very compartmentalized. Maybe that is how he handles life now, how he controls his environment. At least for the foreseeable future, we will continue to spend several hours a day together but live in separate houses. I don’t know if my decision is right, is selfish, is something I will regret or is the best for both of us. I revisit the decision often and, who knows, maybe I will change my mind someday.
Keep Rand close to you hearts and in your thoughts and prayers. He is truly a remarkable man.
Love,
Connie
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