Rand is going to be a demonstration patient for the Neuro-developmental Treatment class for five days, beginning this Thursday! Yippee! The class is taught at a local hospital to graduate OTs and PTs from around the nation. It is a four week course - the first two weeks are held here and are classroom work. The third week the students return to their home venues and use the techniques they've learned on their patients. The fourth week they return to San Jose to work with selected patients under the guidance/critical eye of the instructor. These students are now returning for their fourth week and Rand will be one of the patients! The course is geared to people who have had strokes and the treatment concentrates on his weak side. I'm so happy about that, as to date, everyone has dismissed Rand's right side as being so damaged that it isn't worth putting time and energy in to it. They will work on strengthening the trunk muscles, the right side, balance and to get him to stand straighter, put weight on his right leg, and to be confident in his ability to stand and balance. If they can do that, I'll be sooooooooooo happy! The instructor said that I can bring Thuan along also so he can see the techniques and that I will be able to sit with the other wives and gab about the changes in our lives as a result of the stroke. That is something I have not done at all and I think it will be good for me. Now I have a bunch of appointments to rearrange, etc. so we can pull this off. I'm thrilled!
Last night was Kellie's last speech session with Rand. I may have found another SLP who is willing to come to Rand's house to work with him. Her name is also Kellie! I'm waiting for a call from her so we can chat and get somethings set up. Between Thuan and the "Kellies", the extra monthly expenses are huge, but I think they are worth every cent as Rand is trying so hard and is still making progress. I dread the day when their services are no longer needed.
All is well. Keep Rand close.
Love,
Connie
Tuesday, November 28, 2006
Sunday, November 26, 2006
November 25, Days 302 and 303
The last two days have passed in a whirlwind. I've been too pooped to pop let alone write my daily journal entries. I've been busy taking down fall/Thanksgiving decorations and putting up Christmas decorations. I decided that this year I would only put up what I could do, inside and out, in one day. That should mean I can take it all down in one day, too, right? Therefore, all of our decorations are scaled way back. That's fine, as I'm not in the holiday mood this year.
Rand and I took a short walk yesterday, saw some neighbors and Rand had visitors. Today was pretty much the same, minus the walk. The weather has been so lovely, sunny, clear blue skies, with a nip in the air. We'll take advantage of it as long as it lasts.
Today I started writing down the words that Rand said - usually at random, including sentence fragments. Rand was anxious to read everything I wrote. Finally he said, "I want water." I gave him water but he didn't want it. He said it over and over again - I want water, water, water. He used hand gestures that meant nothing to me, like twisting his hand in the air, moving it back and forth over the table top, he was so, so frustrated. He took my face in his hand, put his face up close to mine and said "I want WATER!" Still, I couldn't figure out what he wanted. He wouldn't give up and repeated the word incessantly until I asked him if he could draw it. He said YES!! He took the pen and wrote "RAND." I said, "Rand." He beamed and said "Yes, I'm Rand." Then he said his name over and over like he was trying to imprint it in his brain - I'm Rand, I'm Rand, I'm Rand. He does this often and unfortunately, the word/name never sticks with him. But it was so simple, I tried making it too complicated. All he wanted was his name. I pointed out the similarities and differences between water and Rand, but he was not interested. He was ready for dinner by then. And so it goes.
Keep Rand close. He is trying so, so hard.
Love,
Connie
Rand and I took a short walk yesterday, saw some neighbors and Rand had visitors. Today was pretty much the same, minus the walk. The weather has been so lovely, sunny, clear blue skies, with a nip in the air. We'll take advantage of it as long as it lasts.
Today I started writing down the words that Rand said - usually at random, including sentence fragments. Rand was anxious to read everything I wrote. Finally he said, "I want water." I gave him water but he didn't want it. He said it over and over again - I want water, water, water. He used hand gestures that meant nothing to me, like twisting his hand in the air, moving it back and forth over the table top, he was so, so frustrated. He took my face in his hand, put his face up close to mine and said "I want WATER!" Still, I couldn't figure out what he wanted. He wouldn't give up and repeated the word incessantly until I asked him if he could draw it. He said YES!! He took the pen and wrote "RAND." I said, "Rand." He beamed and said "Yes, I'm Rand." Then he said his name over and over like he was trying to imprint it in his brain - I'm Rand, I'm Rand, I'm Rand. He does this often and unfortunately, the word/name never sticks with him. But it was so simple, I tried making it too complicated. All he wanted was his name. I pointed out the similarities and differences between water and Rand, but he was not interested. He was ready for dinner by then. And so it goes.
Keep Rand close. He is trying so, so hard.
Love,
Connie
Sunday, November 12, 2006
November 12, 2006 - Day 290
A good friend reminded me of Winston Churchill's famous quote: "When you are going through hell, just keep going." Wise man. That's what I've been trying to do and I'm feeling better. I still tear up when I think of living without Rand close to me or in the next room, but I'm on the long road to acceptance.
Today was bright and sunny, warmer and drier than yesterday, so Rand and I went on an opplevelse. I threw "Willie" in the back of the car and we took off for Los Gatos. We did some Christmas shopping and had a late lunch. Rand was a real trooper, in fact I think he enjoyed the shopping as much as I did. It is amazing how narrow the aisles are when Christmas stuff if out. It is very precarious pushing a wheelchair through most stores. We got back just in time for dinner but I think Rand was stuffed! This was his second time in a restaurant and he did very well. He is conscious of his food, drink, napkins, and careful not to spill, to wipe his mouth and clean his hand. He has made great progress in that area. Fitting the wheelchair arms under the table is still an issue, so he sits further away from the table than the rest of us, which causes some problems. He is now aware of that and is more careful. It is so nice to be able to go out together again. It will be awhile before we go out for a "real" dinner, due to the hour and other issues, but for now, this is perfect.
Last year Rand, my sister Annie, and I planned a cruise to the Mexican Riviera at Christmas this year. In spite of everything that has happened, Annie, some other friends and I are still going. It is about six weeks away and I'm getting excited - I have started my packing list. I have talked to Rand about it casually, reminded him of it, but I haven't put it on his calendar yet. That time will come in the next couple of weeks. I don't think he really understands. Over the last year, when I have stopped to think about the trip, I've always worried how Rand would be without me for over a week and frequently thought I should cancel. After this latest melt down, I am less and less worried. He will miss me, but he will be OK. I'll call him every day and our lives will go on.
Keep Rand close.
Love,
Connie
Today was bright and sunny, warmer and drier than yesterday, so Rand and I went on an opplevelse. I threw "Willie" in the back of the car and we took off for Los Gatos. We did some Christmas shopping and had a late lunch. Rand was a real trooper, in fact I think he enjoyed the shopping as much as I did. It is amazing how narrow the aisles are when Christmas stuff if out. It is very precarious pushing a wheelchair through most stores. We got back just in time for dinner but I think Rand was stuffed! This was his second time in a restaurant and he did very well. He is conscious of his food, drink, napkins, and careful not to spill, to wipe his mouth and clean his hand. He has made great progress in that area. Fitting the wheelchair arms under the table is still an issue, so he sits further away from the table than the rest of us, which causes some problems. He is now aware of that and is more careful. It is so nice to be able to go out together again. It will be awhile before we go out for a "real" dinner, due to the hour and other issues, but for now, this is perfect.
Last year Rand, my sister Annie, and I planned a cruise to the Mexican Riviera at Christmas this year. In spite of everything that has happened, Annie, some other friends and I are still going. It is about six weeks away and I'm getting excited - I have started my packing list. I have talked to Rand about it casually, reminded him of it, but I haven't put it on his calendar yet. That time will come in the next couple of weeks. I don't think he really understands. Over the last year, when I have stopped to think about the trip, I've always worried how Rand would be without me for over a week and frequently thought I should cancel. After this latest melt down, I am less and less worried. He will miss me, but he will be OK. I'll call him every day and our lives will go on.
Keep Rand close.
Love,
Connie
Wednesday, November 08, 2006
November 8, 2006 - Day 286
The last couple of weeks have been especially tough for me as I have decided that I need to come to grips with the issues about whether or not Rand could come home to live some day in the future. At the urging of a friend, I have been making lists of pros and cons for both Rand and me. I've started another list of safety issues, yet another list of concerns for myself and yet more lists of unanswered questions. I have asked the professionals that work with Rand for their assessments and those created more pages of information. Last night I met with the speech therapist, followed by the doctor and nurse who own and operate Rand's Room. Those meetings, along with the rest of the information, gave me a pretty definitive answer. That answer is no, Rand will not be coming home to live. Not in the short term nor the long term. His deficits are so significant that he will not be safe here. I can not provide the level of care that he is receiving, even with round-the-clock help.
The doctor told me that Rand is fortunate in a way, because the portion of his brain that registers "psychic emotion" (I think that is the term he used) is no longer functioning. That is the part of the brain that longs for things gone, pines for what used to be. Rand doesn't have that capacity any more. He doesn't long to be able to walk again, to drive a car, to swing a golf club, mow the lawn. He might show signs of recognition of those activities but he isn't depressed about them, he doesn't miss them, he could care less. The doctor talked about people in Rand's situation who have that piece of the brain intact and what a horrible existence they have - continually depressed. He said that Rand is lucky in that way and so am I. He said that the guilt factor for the spouse is enormous in those situations.
We also discussed Rand's inability to communicate, especially his lack of ability to initiate signals for help and his complete lack of awareness of safety issues. He does not recognize unsafe situations any more, in short, has little or no common sense about changing situations. All of these things, plus dozens more, led me to the conclusion that I cannot have Rand live at home. I haven't even told you about the discussion around needing two care givers 24/7 for him, probably for ever, the monitoring of his health and his meds. The lists go on and on.
Now I have to start working on myself. Obviously, I'm the one with the problem here, not Rand. He is content, safe, well-cared for. I'm the one who misses him, wants things to be the way they were or at least a semblance of the way they were. This isn't the way things are supposed to be! Rand belongs at home. Down deep inside I think I have always thought that he would come home eventually. I have to deal with this so I can get on with life. I'll figure it out over time and get through this one too, with help from friends, Meg and myself. I must to come to grips with this, to be able to enjoy life again and take pleasure in Rand as he is now. Thanks for listening.
Keep Rand close.
Love,
Connie
The doctor told me that Rand is fortunate in a way, because the portion of his brain that registers "psychic emotion" (I think that is the term he used) is no longer functioning. That is the part of the brain that longs for things gone, pines for what used to be. Rand doesn't have that capacity any more. He doesn't long to be able to walk again, to drive a car, to swing a golf club, mow the lawn. He might show signs of recognition of those activities but he isn't depressed about them, he doesn't miss them, he could care less. The doctor talked about people in Rand's situation who have that piece of the brain intact and what a horrible existence they have - continually depressed. He said that Rand is lucky in that way and so am I. He said that the guilt factor for the spouse is enormous in those situations.
We also discussed Rand's inability to communicate, especially his lack of ability to initiate signals for help and his complete lack of awareness of safety issues. He does not recognize unsafe situations any more, in short, has little or no common sense about changing situations. All of these things, plus dozens more, led me to the conclusion that I cannot have Rand live at home. I haven't even told you about the discussion around needing two care givers 24/7 for him, probably for ever, the monitoring of his health and his meds. The lists go on and on.
Now I have to start working on myself. Obviously, I'm the one with the problem here, not Rand. He is content, safe, well-cared for. I'm the one who misses him, wants things to be the way they were or at least a semblance of the way they were. This isn't the way things are supposed to be! Rand belongs at home. Down deep inside I think I have always thought that he would come home eventually. I have to deal with this so I can get on with life. I'll figure it out over time and get through this one too, with help from friends, Meg and myself. I must to come to grips with this, to be able to enjoy life again and take pleasure in Rand as he is now. Thanks for listening.
Keep Rand close.
Love,
Connie
Saturday, November 04, 2006
November 4, 2006 - Day 282
Recently, I have realized that I need to come to grips with the criteria for making a decision about if and/or when Rand can come home to live. The decision will not be easy, not fast, but deliberate, well-thought out, and as unemotional and as realistic as possible. To that end, I am bringing Rand home more often, noting physical barriers, safety issues, mental and emotional reactions and trying to keep it all in perspective. The decision won't be made for many, many months, and the transition, if any, would be slow and well-planned. The epistle below is from today and shows the range of feelings from the sublime to the ridiculous - from the scary to the sad.
. . . . . . . . . . . . . .
Today Rand and I had as normal a day at home as possible. It was very nice and it was especially nice not to have to run back and forth to his house, spend time with him and then come home and deal with stuff around our house. After lunch, I did the ironing while he watched football and golf. I dealt with email while he snoozed. I also took mental notes for my "coming home" criteria list as we went along. One major issue is that Rand can not summon help or assistance, therefore I have to check on him every few minutes. He was sitting at the kitchen table and wanted to watch TV so he scooted himself, in the kitchen chair, near the doorway so he could lean over and peer around the wall at the TV. Scared me to death when I found him! I hadn't left him alone for even 10 min. when I happened to return to the kitchen. He can not remember to use a bell, he cannot call out or summon me in any way and does not see or understand unsafe situations. It is incumbent on me or a caregiver to check on or be with him constantly. That whole thing is a MAJOR safety issue. I don't know if he can be trained to use a bell to call for help or not. So far, it hasn't worked.
When we arrived home today, I wheeled Rand on the sidewalk along the side of the house and came through the back sliding door in the living room. Later I discovered that while traveling on the sidewalk, I ran his wheelchair over the head/neck of a good sized, slow moving lizard! YUCK! Greasy, grimy, lizard guts all over the sidewalk and wheels!! I didn't notice it but when I told Rand about it, he knew. He watched it happen and said not a word. I then pushed his lizard covered wheelchair wheels merrily across our pale carpet. Double uff da!! Sort of funny, but it points out how little he reacts to. Normally, he would go out of his way to avoid hitting that lizard, would warn me of it, would call my attention to it. No more. It isn't important, not a concern. In his mind It is gone as quickly as it happened. The possible consequences of that "road kill" did not register at all.
Oh my. I loved having him home today, but the issues around him living here are so huge. Maybe I need to think in terms of other living arrangements for us. My list of pros and cons, cause and effect, yes and no, serious and silly will continue to grow as I wrestle with this decision. I know what Rand's decision would be. There is no question in my mind.
Keep him close. He was sad when I took him to his house tonight.
Love,
Connie
. . . . . . . . . . . . . .
Today Rand and I had as normal a day at home as possible. It was very nice and it was especially nice not to have to run back and forth to his house, spend time with him and then come home and deal with stuff around our house. After lunch, I did the ironing while he watched football and golf. I dealt with email while he snoozed. I also took mental notes for my "coming home" criteria list as we went along. One major issue is that Rand can not summon help or assistance, therefore I have to check on him every few minutes. He was sitting at the kitchen table and wanted to watch TV so he scooted himself, in the kitchen chair, near the doorway so he could lean over and peer around the wall at the TV. Scared me to death when I found him! I hadn't left him alone for even 10 min. when I happened to return to the kitchen. He can not remember to use a bell, he cannot call out or summon me in any way and does not see or understand unsafe situations. It is incumbent on me or a caregiver to check on or be with him constantly. That whole thing is a MAJOR safety issue. I don't know if he can be trained to use a bell to call for help or not. So far, it hasn't worked.
When we arrived home today, I wheeled Rand on the sidewalk along the side of the house and came through the back sliding door in the living room. Later I discovered that while traveling on the sidewalk, I ran his wheelchair over the head/neck of a good sized, slow moving lizard! YUCK! Greasy, grimy, lizard guts all over the sidewalk and wheels!! I didn't notice it but when I told Rand about it, he knew. He watched it happen and said not a word. I then pushed his lizard covered wheelchair wheels merrily across our pale carpet. Double uff da!! Sort of funny, but it points out how little he reacts to. Normally, he would go out of his way to avoid hitting that lizard, would warn me of it, would call my attention to it. No more. It isn't important, not a concern. In his mind It is gone as quickly as it happened. The possible consequences of that "road kill" did not register at all.
Oh my. I loved having him home today, but the issues around him living here are so huge. Maybe I need to think in terms of other living arrangements for us. My list of pros and cons, cause and effect, yes and no, serious and silly will continue to grow as I wrestle with this decision. I know what Rand's decision would be. There is no question in my mind.
Keep him close. He was sad when I took him to his house tonight.
Love,
Connie
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