- Marla - so she could call the Bishop and Pat;
- CATC - so they wouldn't plan on picking Joe up today for dialysis and the return trip;
- The kidney center so they wouldn't be expecting Joe;
- The kidney center again to make sure that Joe's yearly evaluation was still taking place - it was and I did attend;
- The Senior Center so they wouldn't be expecting Joe tomorrow;
- The adult daycare so they wouldn't be expecting Joe today;
- Dad to let him know what was going on with Joe;
- The neurologist office so his appointment for tomorrow afternoon was cancelled; and
- The kids so they knew what was going on.
Tuesday, January 31, 2012
Who Do You Call?
Upon my return home this morning and prior to trying to take a short nap, I had phone calls to make:
The Last Day Of January 2012
Here it is the last day of January 2012. What a month and there is still a few hours left so I'm warily optimistic at this time that we will end this month on a high note.
During this month, we have made three trips to the emergency room. 1. For his unusual behavior; 2. For his constant drop in his blood pressure; and 3. finding out he has pneumonia.
How did No. 3 sneak in on me? This is Tuesday. Sunday night while sleeping with Joe, I noticed some wheezing in his throat, but didn't get excited about it. I notice that I wheeze every once in a while, but nothing comes of it.
Monday he went to the Senior Center, did his normal routine, I picked him up and took him to physical therapy. Both Jeff and I noticed how worn out he appeared to be. Jeff even told him he couldn't spend all day at the Center doing exercises and then come to therapy and expect to have a great workout. We went home, I fixed dinner and Joe almost immediately went to bed - this was around 7:00. He was so tired. I went to bed around 9:30 p.m. as I could no longer stay awake. We'd both had a bad night of interrupted sleep Sunday evening and I wanted to catch up on some lost sleep.
Around 12:15 a.m. I heard Joe calling "help, help, help, help" and I went into the bedroom where I found him with a glazed look on his face, he was "lost" sitting on the bed, flushed in his face and gurgling very loudly. He wanted to get to the bathroom, but had no strength and couldn't walk on his own. I helped him to the bathroom where I took his temperature and it showed 100 degrees - no more since he couldn't keep him mouth closed to breath. I decided it was time for another trip to the emergency room and quickly.
I had to get both of us dressed and somehow managed to get Joe out the door and into the car. When we were halfway to the hospital, he announced he was going to throw up and he did before I could stop the car and open up the door. Thank goodness it was only on himself. When we arrived at the ER, he was taken back immediately and the tests began.
It was determined that he has pneumonia and most likely he also aspirated in his left lung when he threw up. He was finally admitted to the hospital after about 5 hours in the ER.
During this month, we have made three trips to the emergency room. 1. For his unusual behavior; 2. For his constant drop in his blood pressure; and 3. finding out he has pneumonia.
How did No. 3 sneak in on me? This is Tuesday. Sunday night while sleeping with Joe, I noticed some wheezing in his throat, but didn't get excited about it. I notice that I wheeze every once in a while, but nothing comes of it.
Monday he went to the Senior Center, did his normal routine, I picked him up and took him to physical therapy. Both Jeff and I noticed how worn out he appeared to be. Jeff even told him he couldn't spend all day at the Center doing exercises and then come to therapy and expect to have a great workout. We went home, I fixed dinner and Joe almost immediately went to bed - this was around 7:00. He was so tired. I went to bed around 9:30 p.m. as I could no longer stay awake. We'd both had a bad night of interrupted sleep Sunday evening and I wanted to catch up on some lost sleep.
Around 12:15 a.m. I heard Joe calling "help, help, help, help" and I went into the bedroom where I found him with a glazed look on his face, he was "lost" sitting on the bed, flushed in his face and gurgling very loudly. He wanted to get to the bathroom, but had no strength and couldn't walk on his own. I helped him to the bathroom where I took his temperature and it showed 100 degrees - no more since he couldn't keep him mouth closed to breath. I decided it was time for another trip to the emergency room and quickly.
I had to get both of us dressed and somehow managed to get Joe out the door and into the car. When we were halfway to the hospital, he announced he was going to throw up and he did before I could stop the car and open up the door. Thank goodness it was only on himself. When we arrived at the ER, he was taken back immediately and the tests began.
It was determined that he has pneumonia and most likely he also aspirated in his left lung when he threw up. He was finally admitted to the hospital after about 5 hours in the ER.
Thursday, January 26, 2012
Return of fluid?
I took Joe to his balance therapy session yesterday, but we didn't stay. When we arrived, I mentioned to the therapist what had transpired with Joe yesterday at his appointment. Jeff decided he wanted to take Joe's blood pressure before beginning and see how he was doing. Joe was very unsteady on his feet, had an irregular heart rate and even had slight tremors in his hands. Based on those things, Jeff decided to not work with Joe yesterday for fear of something happening.
Dr. Fox's office called back this morning and told me they'd set up an appointment for Joe with the neurologist next week.
This morning I called the dialysis center to make them aware of what's been happening with Joe. They called just a few minutes ago to let me know that he'd had another episode and they needed to know what new meds Joe was on and they were calling Dr. Neff.
I JUST WISH SOMEONE WOULD FIGURE OUT WHAT'S GOING ON WITH JOE!
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Update: I was told by Joe's kidney doctor to eliminate the Tekturna medication.
Dr. Fox's office called back this morning and told me they'd set up an appointment for Joe with the neurologist next week.
This morning I called the dialysis center to make them aware of what's been happening with Joe. They called just a few minutes ago to let me know that he'd had another episode and they needed to know what new meds Joe was on and they were calling Dr. Neff.
I JUST WISH SOMEONE WOULD FIGURE OUT WHAT'S GOING ON WITH JOE!
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Update: I was told by Joe's kidney doctor to eliminate the Tekturna medication.
Wednesday, January 25, 2012
Burden of Kidney Disease
I just finished reading some paperwork that I found in Joe's dialysis bag and it was quick an eyeopener for me. Apparently he recently took part in an individual survey regarding his feelings about dialysis and renal failure.
There was a physical component summary (PCS) score that reports how you feel about your physical health. In the survey, he was asked if he could do things like climb stairs, move a table, or push a vacuum. The average PCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 34.3. His score was 41.2 which means that he may be as likely to need hospital care as most people on dialysis. And, he may live about as long as others like himself whose scores are in this range.
Then there was the mental component summary (MCS) which reports how he feels about his mental and emotional health. He was asked in the survey, whether he felt calm, had enough energy or felt blue. The average MCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 50.5. His score was 46.9 which means that he may be as likely to need hospital care as most people on dialysis. And, he may live about as long as others like himself whose scores are in this range.
The shocking and stunning question on the survey was the Burden of Kidney Disease which measures his feelings about how much kidney disease affects his life. He was asked if kidney disease takes up too much time, frustrates him or makes him feel like a burden on his family or others. The average score for this one is 45.2. His score was 6.2! This means that he feels he is less able to deal with the burdens of kidney disease and treatment than many others on dialysis.
Questions I would have about this though would include (keeping in mind that all of his other scores were average), did he really understand and hear the questions that he was answering? Where these questions asked to him? I do know that yes he does have problem handling his bieng on dialysis. We've talked about it at length many, many times. That's one of the reasons he gets upset with me is that I don't understand it as well as he wishes I could/would. Joe does need someone to call when he gets frustrated. He doesn't have anyone. I do and am fortunate about that.
There was a physical component summary (PCS) score that reports how you feel about your physical health. In the survey, he was asked if he could do things like climb stairs, move a table, or push a vacuum. The average PCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 34.3. His score was 41.2 which means that he may be as likely to need hospital care as most people on dialysis. And, he may live about as long as others like himself whose scores are in this range.
Then there was the mental component summary (MCS) which reports how he feels about his mental and emotional health. He was asked in the survey, whether he felt calm, had enough energy or felt blue. The average MCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 50.5. His score was 46.9 which means that he may be as likely to need hospital care as most people on dialysis. And, he may live about as long as others like himself whose scores are in this range.
The shocking and stunning question on the survey was the Burden of Kidney Disease which measures his feelings about how much kidney disease affects his life. He was asked if kidney disease takes up too much time, frustrates him or makes him feel like a burden on his family or others. The average score for this one is 45.2. His score was 6.2! This means that he feels he is less able to deal with the burdens of kidney disease and treatment than many others on dialysis.
Questions I would have about this though would include (keeping in mind that all of his other scores were average), did he really understand and hear the questions that he was answering? Where these questions asked to him? I do know that yes he does have problem handling his bieng on dialysis. We've talked about it at length many, many times. That's one of the reasons he gets upset with me is that I don't understand it as well as he wishes I could/would. Joe does need someone to call when he gets frustrated. He doesn't have anyone. I do and am fortunate about that.
Speed Bump
Things have still been going well for Joe and me. However, it seemed as though we'd hit a little speed bump this morning. His cardiologist's office called yesterday for me to bring him in for his bi-yearly pacemaker checkup. He missed it in November due to his hospitalization and there was a cancellation, so we hopped on it.
It was a strange morning - thank goodness for a great night sleep for both of us - Joe in our bed and me out in the living room on the mattress. Joe got his shower and when I went to get into the shower, the shower mat was covered with poop. I asked him if he'd had an accident in the tub which was fine for me - better there than on the bathroom floor. He said "no", he thought maybe I'd done it after my shower yesterday. It wasn't me. I can assure you of that. Then he said maybe it had been B.J. did it while we were gone yesterday. Hmmm, that still didn't make sense to me for two reasons...1. If it had been B.J., I'm quite sure that I would have smelled it sometime during the course of using the toilet. My sense of smell is pretty darn good and I picked up on the strange odor the minute I walked into the bathroom this morning. 2. If it had been B.J. the water from Joe's shower should have washed it down the drain, I would think. Anyway, I wound up taking the shower hose and with HOT water I washed everything off the mat and removed the mat and no more poop. Not sterile, but would work in a pinch until further bleaching can take place. I did leave the bathroom door and shower curtain open so that I can see if it was indeed B.J. doing this.
We got out the door right on schedule. The visit at the doctor's office then took another weird turn. The nurse took Joe's blood pressure four times - two standing, two sitting. His pressure was 190 something over something. Hmmm, kinda high she says. While plugged up and waiting for the doctor, Joe tended to drift off and on and lean way over on his right side. I was ready to catch him if he fell. The testing on his pacemaker takes place, he has problems standing while dressing. In fact, I have my hand on his back so that he doesn't fall over backwards. We start walking down the hall and then he starts wobbling and knees bouncing. (Same symptoms as this past Sunday, same as when the Senior Center called me last Monday, same as when I went to pick him up from dialysis on Saturday, same as he did after physical therapy on Tuesday and the same as one other day last week).
The nurses had him sit down, they took his blood pressure again. 100 over ?, then 90 over ?, then 80/43. They made him sit for quite awhile until he was able to walk once again. The doctor advised me to switch one of his meds from breakfast to bedtime.
I called the daycare center to check on Joe and see if he was still doing okay. The nurse said other than leaning to the right when walking, he was doing fine. Is the leaning, the leg loss the beginning signs of the return of the fluid on his brain? Did he actually have a bowel movement in the shower this morning and was not aware of it? Only time will tell.
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This morning was one of those days when I feel like my hands are tied and I'm feeling as though I'm drowning. I should have been to work at 8:00 a.m., but since Joe's appointment was at 8:30 a.m. that meant I was missing work. Then his appointment stretched into almost 2 1/2 hours due to everything that happened. And, because he changed his mind and wanted to go to the daycare, he was missing out on eating their lunch. This meant I had to go by and get him something. That took more time out of the way and by the time I made it to work at around 11:00 a.m., I had now missed three hours of work. And, I will be leaving around 4:00 p.m. to take him to physical therapy. Those hours add up over the course of my two week paychecks and add stress to paying for the bills. This is the kind of thing I try to keep from sharing with Joe as he already feels responsible for some of my problems.
It was a strange morning - thank goodness for a great night sleep for both of us - Joe in our bed and me out in the living room on the mattress. Joe got his shower and when I went to get into the shower, the shower mat was covered with poop. I asked him if he'd had an accident in the tub which was fine for me - better there than on the bathroom floor. He said "no", he thought maybe I'd done it after my shower yesterday. It wasn't me. I can assure you of that. Then he said maybe it had been B.J. did it while we were gone yesterday. Hmmm, that still didn't make sense to me for two reasons...1. If it had been B.J., I'm quite sure that I would have smelled it sometime during the course of using the toilet. My sense of smell is pretty darn good and I picked up on the strange odor the minute I walked into the bathroom this morning. 2. If it had been B.J. the water from Joe's shower should have washed it down the drain, I would think. Anyway, I wound up taking the shower hose and with HOT water I washed everything off the mat and removed the mat and no more poop. Not sterile, but would work in a pinch until further bleaching can take place. I did leave the bathroom door and shower curtain open so that I can see if it was indeed B.J. doing this.
We got out the door right on schedule. The visit at the doctor's office then took another weird turn. The nurse took Joe's blood pressure four times - two standing, two sitting. His pressure was 190 something over something. Hmmm, kinda high she says. While plugged up and waiting for the doctor, Joe tended to drift off and on and lean way over on his right side. I was ready to catch him if he fell. The testing on his pacemaker takes place, he has problems standing while dressing. In fact, I have my hand on his back so that he doesn't fall over backwards. We start walking down the hall and then he starts wobbling and knees bouncing. (Same symptoms as this past Sunday, same as when the Senior Center called me last Monday, same as when I went to pick him up from dialysis on Saturday, same as he did after physical therapy on Tuesday and the same as one other day last week).
The nurses had him sit down, they took his blood pressure again. 100 over ?, then 90 over ?, then 80/43. They made him sit for quite awhile until he was able to walk once again. The doctor advised me to switch one of his meds from breakfast to bedtime.
I called the daycare center to check on Joe and see if he was still doing okay. The nurse said other than leaning to the right when walking, he was doing fine. Is the leaning, the leg loss the beginning signs of the return of the fluid on his brain? Did he actually have a bowel movement in the shower this morning and was not aware of it? Only time will tell.
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This morning was one of those days when I feel like my hands are tied and I'm feeling as though I'm drowning. I should have been to work at 8:00 a.m., but since Joe's appointment was at 8:30 a.m. that meant I was missing work. Then his appointment stretched into almost 2 1/2 hours due to everything that happened. And, because he changed his mind and wanted to go to the daycare, he was missing out on eating their lunch. This meant I had to go by and get him something. That took more time out of the way and by the time I made it to work at around 11:00 a.m., I had now missed three hours of work. And, I will be leaving around 4:00 p.m. to take him to physical therapy. Those hours add up over the course of my two week paychecks and add stress to paying for the bills. This is the kind of thing I try to keep from sharing with Joe as he already feels responsible for some of my problems.
Tuesday, January 24, 2012
Messing In My Backyard
I really don't like it when people think they have to stick their nose into our personal business. Case in point, the dialysis social worker called today to "see how things are going". She was fishing. I don't know what she was fishing for, but she was looking for something. I know that she had a long talk with Joe today. Did she tell me? No. But, I know that she did because one of my very good friends saw it happening.
Do I know what Joe told her? Nope, simply because she didn't/won't/couldn't/can't tell me what he says to her. How is it she can't tell me what he says, but she can come talk to me about us? She did say, however, that Joe mentioned that an appointment is being set up for counseling. She thinks that's a good idea for BOTH of us to go. She doesn't know that it's only ONE of us going - at least for the time being.
I'm sure she means well, but to me it's only stirring the pot when she talks to Joe. After all, this is a man who loses touch with reality many times. If she can come asking me questions about us, why can't we have a discussion about Joe so that my side of the story, probably the true side of the story, can be heard?
I have two words for her...BUTT OUT! If I can't be a part of the other side of the conversation, please don't come fishing in my pond.
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1/26/2012 - Additional questions as to motive of social worker after thinking on this a couple of days.
Do I know what Joe told her? Nope, simply because she didn't/won't/couldn't/can't tell me what he says to her. How is it she can't tell me what he says, but she can come talk to me about us? She did say, however, that Joe mentioned that an appointment is being set up for counseling. She thinks that's a good idea for BOTH of us to go. She doesn't know that it's only ONE of us going - at least for the time being.
I'm sure she means well, but to me it's only stirring the pot when she talks to Joe. After all, this is a man who loses touch with reality many times. If she can come asking me questions about us, why can't we have a discussion about Joe so that my side of the story, probably the true side of the story, can be heard?
I have two words for her...BUTT OUT! If I can't be a part of the other side of the conversation, please don't come fishing in my pond.
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1/26/2012 - Additional questions as to motive of social worker after thinking on this a couple of days.
- Is she trying to be a marriage counselor for us? If she is, she still needs to butt out. It's almost like she's causing more problems asking Joe how it's going between the two of us.
- Is she trying to can information from me so that she can make a determination on something? Is she thinking that Joe might still be suicidal in some way and she's gathering info?
- Is she trying to get my side of the story and see if it matches up with Joe's?
- Does she truly realize Joe's mental capacity? I'd love to ask her this..."If you were involved in an accident and Joe was the only witness that stood between you and the truth, would you want him to be your witness"?
Monday, January 23, 2012
My Little Piece Of Heaven On Earth
I picked my battles this last week and there was no war. The change in our home was incredible - peace and tranquility. Not only did I notice a change in myself, but there was the trickle down effect on Joe also. He did the dishes for me each evening because he said he wanted to do them - not because he had to do them. He was more jovial and engaging and so much more loving.
We did make a run to the ER yesterday though. Joe lost function in his legs after Sacrament Meeting yesterday and almost collapsed in the hallway. I ran home and got his items to check his blood sugar - it wasn't low. So, after having someone help me walk him out to the car, I took him to the ER since this same thing had happened in various degrees this last week.
After sitting there for over an hour, Joe felt much better and was able to stand and walk so that's what we did - we went home.
We did make a run to the ER yesterday though. Joe lost function in his legs after Sacrament Meeting yesterday and almost collapsed in the hallway. I ran home and got his items to check his blood sugar - it wasn't low. So, after having someone help me walk him out to the car, I took him to the ER since this same thing had happened in various degrees this last week.
After sitting there for over an hour, Joe felt much better and was able to stand and walk so that's what we did - we went home.
Thursday, January 19, 2012
Make No Mistake...
I love my husband with every fiber of my being. No one has or will ever love him like I do. No one has or will ever take care of him the way I do.
I try to protect Joe from any more pain and difficulty than necessary. That's why I don't tell him when something goes wrong or when I'm having a hard time. I don't cry in front or around him. I don't want to worry him, so therefore, I carry the burdens for both of us.
I know I am overprotective. Sometimes I wonder if I'm too overprotective. If I carry the burden alone, am I keeping us from sharing part of our journey together? If I continue doing as I am, am I keeping him from continuing to have his own independency even though it's a fact that he's not going to get any better?
I try to protect Joe from any more pain and difficulty than necessary. That's why I don't tell him when something goes wrong or when I'm having a hard time. I don't cry in front or around him. I don't want to worry him, so therefore, I carry the burdens for both of us.
I know I am overprotective. Sometimes I wonder if I'm too overprotective. If I carry the burden alone, am I keeping us from sharing part of our journey together? If I continue doing as I am, am I keeping him from continuing to have his own independency even though it's a fact that he's not going to get any better?
I've Changed
I realize I've changed alot since I've become Joe's caregiver. I'm not sure exactly how and when I started noticing the change, but I know that I'm definitely not the same. I do know, too, that I will never be the same person that I was before. This is very sad to me. To know that many times it seems as though my former life belongs to someone else other than me. It's almost like having an out of body experience and looking back on myself and my previous experiences.
My changes can be a good thing. I've learned a lot. I've learned I'm a lot stronger in certain ways. I've found that I can do things I never thought possible. A few of my opinions have changed - especially those opinions I was formulating about my dad and his care to my mom. Now I understand why he set certain parameters for her to live by, i.e., going to be at a certain time every night; I understand his loss of patience and understand at times; I definitely understand his frustration at her lack of doing many things. Most especially I do recognize his immense love for her. Believe me, if you didn't love the person you are caring for, you wouldn't do it! It's a tireless, thankless job filled with no sleep, no alone time, no real conversation nor communication between you and the person you love and married. I've learned to be even more resourceful. I've learned that I can stand on my own, when necessary. I've learned who I can count on and who I can't. I am still learning that I can't do eveything myself and if not now, sometime in the future I will have to rely upon and ask others for help.
I've gotten tougher in some ways and softer in others. These changes haven't come easily and didn't happen all at one time. I've had to give up so much along the way. Things that really mattered to me. I can't do everything I used to do and now would love to do. I could make a list of all the changes in me, but then I might wind up feeling really sorry for myself and really mourn those losses.
I do know that I've felt so angry at Joe at times for putting me in this situation. I want back the man I married! I want back the man who used to write my love poems, who prepared dinner for me, who made love to me, the man who made me genuinely laugh everyday, the man who could take care of himself by selecting his clothing and dress without assistance from me - I miss and mourn for that man. But, I love this man too. I've seen him cry because he mourns for his lost past; he's cried because he knows what he's done to me and he says he's so sorry; I've seen him cry from frustration of not being able to remember something, find his glasses, not be able to walk without falling - I think we miss each other.
My changes can be a good thing. I've learned a lot. I've learned I'm a lot stronger in certain ways. I've found that I can do things I never thought possible. A few of my opinions have changed - especially those opinions I was formulating about my dad and his care to my mom. Now I understand why he set certain parameters for her to live by, i.e., going to be at a certain time every night; I understand his loss of patience and understand at times; I definitely understand his frustration at her lack of doing many things. Most especially I do recognize his immense love for her. Believe me, if you didn't love the person you are caring for, you wouldn't do it! It's a tireless, thankless job filled with no sleep, no alone time, no real conversation nor communication between you and the person you love and married. I've learned to be even more resourceful. I've learned that I can stand on my own, when necessary. I've learned who I can count on and who I can't. I am still learning that I can't do eveything myself and if not now, sometime in the future I will have to rely upon and ask others for help.
I've gotten tougher in some ways and softer in others. These changes haven't come easily and didn't happen all at one time. I've had to give up so much along the way. Things that really mattered to me. I can't do everything I used to do and now would love to do. I could make a list of all the changes in me, but then I might wind up feeling really sorry for myself and really mourn those losses.
I do know that I've felt so angry at Joe at times for putting me in this situation. I want back the man I married! I want back the man who used to write my love poems, who prepared dinner for me, who made love to me, the man who made me genuinely laugh everyday, the man who could take care of himself by selecting his clothing and dress without assistance from me - I miss and mourn for that man. But, I love this man too. I've seen him cry because he mourns for his lost past; he's cried because he knows what he's done to me and he says he's so sorry; I've seen him cry from frustration of not being able to remember something, find his glasses, not be able to walk without falling - I think we miss each other.
The Best Laid Plans
I've found out that generally it does no good to make plans. I make appointments to meet with friends or do something, with or without Joe, and then BOOM! out of no where all those plans change. Sometimes happens to Joe and everything comes to a halt. I've almost gotten to the point that I don't want to make plans at all.
My life revolves around Joe and his conditions. I'm kinda getting used to it though.Whenever I do schedule something or am asked to attend an event, I always answer "Lord willing and the creek don't rise and all goes well with Joe..." I can't count on anything happening for a certainty. Everything is contingent on Joe. Everyday, everyone, including me, contends with the daily "what might could happens". We work our normal lives around the weather, car troubles, our work, etc. We all have uncertainty in our lives, but when so much of my uncertainty comes because of Joe, it becomes doubly frustrating and maddening at times.
The changes in plans often cause me to feel resentful and irritated at Joe - though I realize he's not doing any of this on purpose. I remember that last year I had purchased tickets for us to attend the regional Professional Bullrider's competition in our city. I love bullriding and was thrilled with the prospect of watching it live and in person and very near the bottom of the stands. I was psyched! I had asked Joe if he needed to use the restoom before walking so far down to the bottom. No, he said he was fine. Within a few minutes just as the lights dimmed, he needed to go and I had to help walk him up those dark steps. Then some minutes after returning again, he needed to go again. When he was ready to be seated again, I told him "no, let's just go"! I was not going to keep walking up and down those steps and was missing the rodeo anyway - so we left. Yes, I was upset. I had looked forward to this night for several weeks and now I was not going to experience it.
I've arranged to have lunch with girlfriends and have taken Joe with me - because of guilt and necessity when I didn't want to.
I've not attended evening parties or get-togethers because I felt I needed to be with Joe. I've missed so many baby or bridal showers or evening Relief Society meetings. I think I've written somewhere else that I dropped out of a photography class I wanted to take so badly because of the guilt of having someone stay with him on those nights. Even church attendance is not regular when I so desperately need that quiet comfortable feeling of peace. We make plans to attend, but then Joe's physical condition may not be conducive to attendance. Or, we make go only to have to leave.
Yes, uncertainty is part of life. I am going to have to learn to make my plans and just keep being flexible (and forgiving) enough to make adjustments as needed.
My life revolves around Joe and his conditions. I'm kinda getting used to it though.Whenever I do schedule something or am asked to attend an event, I always answer "Lord willing and the creek don't rise and all goes well with Joe..." I can't count on anything happening for a certainty. Everything is contingent on Joe. Everyday, everyone, including me, contends with the daily "what might could happens". We work our normal lives around the weather, car troubles, our work, etc. We all have uncertainty in our lives, but when so much of my uncertainty comes because of Joe, it becomes doubly frustrating and maddening at times.
The changes in plans often cause me to feel resentful and irritated at Joe - though I realize he's not doing any of this on purpose. I remember that last year I had purchased tickets for us to attend the regional Professional Bullrider's competition in our city. I love bullriding and was thrilled with the prospect of watching it live and in person and very near the bottom of the stands. I was psyched! I had asked Joe if he needed to use the restoom before walking so far down to the bottom. No, he said he was fine. Within a few minutes just as the lights dimmed, he needed to go and I had to help walk him up those dark steps. Then some minutes after returning again, he needed to go again. When he was ready to be seated again, I told him "no, let's just go"! I was not going to keep walking up and down those steps and was missing the rodeo anyway - so we left. Yes, I was upset. I had looked forward to this night for several weeks and now I was not going to experience it.
I've arranged to have lunch with girlfriends and have taken Joe with me - because of guilt and necessity when I didn't want to.
I've not attended evening parties or get-togethers because I felt I needed to be with Joe. I've missed so many baby or bridal showers or evening Relief Society meetings. I think I've written somewhere else that I dropped out of a photography class I wanted to take so badly because of the guilt of having someone stay with him on those nights. Even church attendance is not regular when I so desperately need that quiet comfortable feeling of peace. We make plans to attend, but then Joe's physical condition may not be conducive to attendance. Or, we make go only to have to leave.
Yes, uncertainty is part of life. I am going to have to learn to make my plans and just keep being flexible (and forgiving) enough to make adjustments as needed.
My Quality of Care
I don't always feel confident that I give Joe the kind of care and attention he deserves. Sometimes I worry that I won't be able to figure out what I need to do and make the right decisions. What if I make the wrong decision?
I do know that when moments of crisis has occurred though, I have had some innate sense of right and knowledge kick in at the precise time I've needed help. I may have been talking out loud to myself, panicking, talking to 911 on the phone and praying all at the same time, but I have had that instinctual need to save Joe's life click for me - at the right time. I have risen to meet some very difficult challenges and felt confident and pleased with myself in the end.
So, the same type of care that I give to Joe in moments of crisis, I want to be able to offer during the "normal", non-panicked times.
They say, "God doesn't give you more than you can handle." (I say, "He must have me mixed up with someone else"). Some days it's a constant rush of chaos, combined with crisis and it's just react, react, react.
During those times, I have no choice but to grab onto whatever I can - intuition, instinct, Mother Magic - whatever label you want to put on it. Everything happens so quickly, so instantaneously. DECIDE. RESPOND. ACT. Do the best you can knowing that there is no right or wrong, it's just DO IT! It is truly a living hell that no one looking in from the outside can fully understand and they certainly should not be judging. I've had to move and move quickly and nothing seems safe at that time. I've come to fully realize that my Heavenly Father has truly guided me in my thoughts and in my actions. By doing so, I have saved the life of my husband on several occasions. There have been times after the crisis has been averted when I have just had to sit down and cry when the reality of what has just transpired hits me. I have literally had Joe's life in my hands. What if I hadn't done the right thing? What happens if I can't respond the next time?
When I do come out on the other end, I wonder how I lived through it and I take a deep breath and say a prayer of thankfulness.
Someone wrote: "Every crisis comes with automatic Power steering". Amen.
I do know that when moments of crisis has occurred though, I have had some innate sense of right and knowledge kick in at the precise time I've needed help. I may have been talking out loud to myself, panicking, talking to 911 on the phone and praying all at the same time, but I have had that instinctual need to save Joe's life click for me - at the right time. I have risen to meet some very difficult challenges and felt confident and pleased with myself in the end.
So, the same type of care that I give to Joe in moments of crisis, I want to be able to offer during the "normal", non-panicked times.
They say, "God doesn't give you more than you can handle." (I say, "He must have me mixed up with someone else"). Some days it's a constant rush of chaos, combined with crisis and it's just react, react, react.
During those times, I have no choice but to grab onto whatever I can - intuition, instinct, Mother Magic - whatever label you want to put on it. Everything happens so quickly, so instantaneously. DECIDE. RESPOND. ACT. Do the best you can knowing that there is no right or wrong, it's just DO IT! It is truly a living hell that no one looking in from the outside can fully understand and they certainly should not be judging. I've had to move and move quickly and nothing seems safe at that time. I've come to fully realize that my Heavenly Father has truly guided me in my thoughts and in my actions. By doing so, I have saved the life of my husband on several occasions. There have been times after the crisis has been averted when I have just had to sit down and cry when the reality of what has just transpired hits me. I have literally had Joe's life in my hands. What if I hadn't done the right thing? What happens if I can't respond the next time?
When I do come out on the other end, I wonder how I lived through it and I take a deep breath and say a prayer of thankfulness.
Someone wrote: "Every crisis comes with automatic Power steering". Amen.
Tuesday, January 17, 2012
Fireproof
This last week has really been an eyeopener for me and my relationship with Joe. There was an incident that took place one evening between Joe and I that had never happened before regarding Joe's mental state. It was so frightening to me that I discussed it with his doctor the next day and she urged me to get him to the emergency room as soon as possible to have a full workup done on him. So, I did just that. We were at the emergency room some 7 1/2 hours while a series of tests took place. And, near the end of the ER stay, a case worker came and spoke to each one of us individually. Long story short - the emergency room doctor discussed Joe's unusual irrational behavior with a phone call to both his neurologist and nephrologist for a consult and direction on a new medication. It was/has been determined that apparently Joe's vascular dementia is becoming worse. He's now been put on another medication that will hopefully alleviate some of the stress/irritation he's been feeling, especially towards me.
I've been quite stressed and frustrated with the deterioration of my relationship with Joe. It's been very difficult to regard him as my husband and companion when so many of the things he's been doing have been so juvenile or childlike. A very good friend suggested that I have to learn to "pick my battles"...meaning learn what I think is important enough to correct Joe about in his everyday activities. I have to learn what he is and is not capable of doing. He just flat out is not able to function mentally like he used to and I have to accept that. A perfect example of that occurred yesterday at his physical therapy session. He was having a very detailed oriented conversation with his therapist about something he'd read many years ago. He was quoting specific numbers and data. I was amazed at how his long term memory is so intact and at the same time realizing, along with his therapist, how fractured his short term memory is becoming. All this has slowly been working up to a point of frustration for both Joe and me - a point of frequent irritation and misunderstanding. I haven't been picking my battles. I hadn't understood until this last week that nothing will change Joe's behavior with all the fussing in the world. I've learned that if he continues to not flush the toilet, or he wipes toothpaste on the clean hand towel or he gets into the food items on the second shelf of the refrigerator, his mind will not or cannot comprehend that he's doing something "wrong or unacceptable". I'm learning to just flush to toilet or change the towel or whatever because it's just quicker, easier and won't cause extra contention. I am trying to learn to serve my husband.
One of the things that has also helped was watching a movie I'd had on the DVR for several weeks. It was called "Fireproof". We finally got around to sitting down together to watch it.
It's about...At work, inside burning buildings, Capt. Caleb Holt lives by the old firefighter's adage: Never leave your partner behind. At home, in the cooling embers of his marriage, he lives by his own rules. After seven years of marriage, Caleb and Catherine Holt have drifted so far apart that Catherine wishes she had never married. Neither one understands the pressures the other faces--he as firefighter and she as the public relations director of a hospital. Regular arguments over jobs, finances, housework, and outside interests have readied them both to move on to something with more sparks.
As the couple prepares to enter divorce proceedings, Caleb's father challenges his son to commit to a 40-day experiment he calls 'The Love Dare.' Wondering if it's even worth the effort, Caleb agrees, but more for his father's sake more than for his marriage. When Caleb discovers the book's daily challenges are tied into his parents' new found faith, his already limited interest is further dampened. While trying to stay true to his promise, Caleb becomes frustrated time and again. He finally asks his father, 'How am I supposed to show love to somebody who constantly rejects me?' When his father explains that this is the love God shows to us, Caleb makes a life-changing commitment to love God. And--with God's help--he begins to understand what it means to truly love his wife. But is it too late to fireproof his marriage? His job is to rescue others. Now Caleb Holt is ready to face his toughest job ever--rescuing his wife's heart.
As I watched this movie, it made a real change in my perspective about how I had been treating Joe and not having patience with the things he can't do any longer. I'd taken some notes during the movie about some of the things that had been said that made a real impact with me. The "Love Dare" were things like...
The first part of this dare is fairly simple. Although love is communicated in a number of ways, our words often reflect the condition of our heart. For the next day, resolve to demonstrate patience and to say nothing negative to your spouse at all. If the temptation arises, choose to not say anything. It's better to hold your tongue than to say something you'll regret.
In addition to saying nothing negative to your spouse again today, do at least one unexpected gesture as an act of kindness.
Whatever you put your time, energy, and money into will become more important to you. It's hard to care for something you are not investing in. Along with restraining from negative comments, buy your spouse something that says "I was thinking of you today."
Contact your spouse sometime during the business of the day. Have no agenda other than asking how he or she is doing and if there is anything you could do for them.
Think of a specific way you'd like to greet your spouse today. Do it with a smile and with enthusiasm. Then determine to change your greeting to reflect your love for them
What need does your spouse have that you could meet today? Choose a gesture that says, "I cherish you" and do it with a smile.
Begin praying today for your spouse's heart. Pray for three specific areas where you desire for God to work in your spouse's life and in your marriage. (The biggest thing I wanted to happen this year was for Joe to find joy in his life. I realized how can that happen if I'm not contributing to that? What if I am one of the reasons why he can't find that joy)?
Prepare a special dinner at home, just for the two of you. The dinner can be as nice as you prefer. Focus this time on getting to know your spouse better, perhaps in areas you've rarely talked about. Determine to make it an enjoyable evening for you and your mate.
I decided to try some of these things - these love dares. It's only been three days, but I feel and am aware of a change in my attitude towards Joe. I've made sure that there has been a more visual display of affection between the two of us and in turn, I've felt more genuine love for him. He's also been more loving and helpful - he's done the dishes for me a couple of times, he's folded and put away some clothes, etc. I'm excited in our changes - particularly mine. Home can truly be a heaven on earth.
I've been quite stressed and frustrated with the deterioration of my relationship with Joe. It's been very difficult to regard him as my husband and companion when so many of the things he's been doing have been so juvenile or childlike. A very good friend suggested that I have to learn to "pick my battles"...meaning learn what I think is important enough to correct Joe about in his everyday activities. I have to learn what he is and is not capable of doing. He just flat out is not able to function mentally like he used to and I have to accept that. A perfect example of that occurred yesterday at his physical therapy session. He was having a very detailed oriented conversation with his therapist about something he'd read many years ago. He was quoting specific numbers and data. I was amazed at how his long term memory is so intact and at the same time realizing, along with his therapist, how fractured his short term memory is becoming. All this has slowly been working up to a point of frustration for both Joe and me - a point of frequent irritation and misunderstanding. I haven't been picking my battles. I hadn't understood until this last week that nothing will change Joe's behavior with all the fussing in the world. I've learned that if he continues to not flush the toilet, or he wipes toothpaste on the clean hand towel or he gets into the food items on the second shelf of the refrigerator, his mind will not or cannot comprehend that he's doing something "wrong or unacceptable". I'm learning to just flush to toilet or change the towel or whatever because it's just quicker, easier and won't cause extra contention. I am trying to learn to serve my husband.
One of the things that has also helped was watching a movie I'd had on the DVR for several weeks. It was called "Fireproof". We finally got around to sitting down together to watch it.
As the couple prepares to enter divorce proceedings, Caleb's father challenges his son to commit to a 40-day experiment he calls 'The Love Dare.' Wondering if it's even worth the effort, Caleb agrees, but more for his father's sake more than for his marriage. When Caleb discovers the book's daily challenges are tied into his parents' new found faith, his already limited interest is further dampened. While trying to stay true to his promise, Caleb becomes frustrated time and again. He finally asks his father, 'How am I supposed to show love to somebody who constantly rejects me?' When his father explains that this is the love God shows to us, Caleb makes a life-changing commitment to love God. And--with God's help--he begins to understand what it means to truly love his wife. But is it too late to fireproof his marriage? His job is to rescue others. Now Caleb Holt is ready to face his toughest job ever--rescuing his wife's heart.
As I watched this movie, it made a real change in my perspective about how I had been treating Joe and not having patience with the things he can't do any longer. I'd taken some notes during the movie about some of the things that had been said that made a real impact with me. The "Love Dare" were things like...
The first part of this dare is fairly simple. Although love is communicated in a number of ways, our words often reflect the condition of our heart. For the next day, resolve to demonstrate patience and to say nothing negative to your spouse at all. If the temptation arises, choose to not say anything. It's better to hold your tongue than to say something you'll regret.
In addition to saying nothing negative to your spouse again today, do at least one unexpected gesture as an act of kindness.
Whatever you put your time, energy, and money into will become more important to you. It's hard to care for something you are not investing in. Along with restraining from negative comments, buy your spouse something that says "I was thinking of you today."
Contact your spouse sometime during the business of the day. Have no agenda other than asking how he or she is doing and if there is anything you could do for them.
Think of a specific way you'd like to greet your spouse today. Do it with a smile and with enthusiasm. Then determine to change your greeting to reflect your love for them
What need does your spouse have that you could meet today? Choose a gesture that says, "I cherish you" and do it with a smile.
Begin praying today for your spouse's heart. Pray for three specific areas where you desire for God to work in your spouse's life and in your marriage. (The biggest thing I wanted to happen this year was for Joe to find joy in his life. I realized how can that happen if I'm not contributing to that? What if I am one of the reasons why he can't find that joy)?
Prepare a special dinner at home, just for the two of you. The dinner can be as nice as you prefer. Focus this time on getting to know your spouse better, perhaps in areas you've rarely talked about. Determine to make it an enjoyable evening for you and your mate.
I decided to try some of these things - these love dares. It's only been three days, but I feel and am aware of a change in my attitude towards Joe. I've made sure that there has been a more visual display of affection between the two of us and in turn, I've felt more genuine love for him. He's also been more loving and helpful - he's done the dishes for me a couple of times, he's folded and put away some clothes, etc. I'm excited in our changes - particularly mine. Home can truly be a heaven on earth.
Friday, January 13, 2012
Pick My Battles
"You've got to learn to pick your battles. Especially since Joe will be going to see someone who will be paid to listen to his problems and his side of the story and you won't be there. If Joe does or doesn't do some things that it would be better to not point out, then just let it go rather than start what he perceives to be a fight". This was the great advice given to me by Marla.
I have got to start looking for the positives and not the negatives in Joe. I should realize this all by now, but I'm hard-headed and stubborn, I suppose.
Marla said I've also become very angry at Joe. I realize that and I agree. I am angry at him. He has been solely responsible for the biggest changes in my life. He has basically been in control one way or another, and frustrated and I'm tired of it and feel my life is not mine anymore. I wanted this year to be different, but thus far it doesn't seem to have improved.
I did hear it, and was told several times, that if Joe should ever hurt me again, threaten to hurt me, make veil threats about hurting himself, attempt to hurt himself or any like comment or action, that I am to call the non-emergency police department number. No excuses! Hopefully, it will never get to that.
The thing that was the hardest to digest and swallow was when Joe turned to me in the intake office and said:
Joe: If I'm going to do this, I think there should be a level playing field.
Me: What do you mean?
Joe: Well don't you think you're part of the problem?
Me: I've never said that I was perfect, that I don't yell or get upset with you. But, this is for you to figure out what's going on. Besides, your treatment is paid for. I don't have insurance nor can I afford to pay.
Marla did point out later that it should be remembered "it wasn't me that had Joe's head pinned to the couch cushion hurting him". I've never attempted to strangle him or hurt him physically.
I KNOW I've got to get a grip on circumstances, and soon. I cannot continue to live my life as I am doing it now. I'm hoping that with his new medications and my having six hours on Saturdays free from Joe, that I will begin to feel some rejuvenation and hope.
I have got to start looking for the positives and not the negatives in Joe. I should realize this all by now, but I'm hard-headed and stubborn, I suppose.
Marla said I've also become very angry at Joe. I realize that and I agree. I am angry at him. He has been solely responsible for the biggest changes in my life. He has basically been in control one way or another, and frustrated and I'm tired of it and feel my life is not mine anymore. I wanted this year to be different, but thus far it doesn't seem to have improved.
I did hear it, and was told several times, that if Joe should ever hurt me again, threaten to hurt me, make veil threats about hurting himself, attempt to hurt himself or any like comment or action, that I am to call the non-emergency police department number. No excuses! Hopefully, it will never get to that.
The thing that was the hardest to digest and swallow was when Joe turned to me in the intake office and said:
Joe: If I'm going to do this, I think there should be a level playing field.
Me: What do you mean?
Joe: Well don't you think you're part of the problem?
Me: I've never said that I was perfect, that I don't yell or get upset with you. But, this is for you to figure out what's going on. Besides, your treatment is paid for. I don't have insurance nor can I afford to pay.
Marla did point out later that it should be remembered "it wasn't me that had Joe's head pinned to the couch cushion hurting him". I've never attempted to strangle him or hurt him physically.
I KNOW I've got to get a grip on circumstances, and soon. I cannot continue to live my life as I am doing it now. I'm hoping that with his new medications and my having six hours on Saturdays free from Joe, that I will begin to feel some rejuvenation and hope.
It's Joe Day
But then, when is it not Joe Day? This is the way my day went yesterday...
12:30 a.m. - Arrive home from emergency room.
1:30 a.m. - Finally crawl into my nice warm? queen-sized mattress in the living room to go to sleep. And sleep I did, as did Joe. However, I reset my phone alarm to ring at 7:30 a.m.when it went off at 6:30 a.m. Not only was I still so sleepy and non-functional, but Joe was still sleeping like a log himself.
9:30 - 10 a.m. - When I got to the office and researched the information on the internet about the prescribed medications being added to his ever-lengthening list of medicines. One of them was Seroquel which is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions). These tablets are also used alone or with other medications to treat or prevent episodes of mania (frenzied, abnormally excited or irritated mood) or depression in patients with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Seroquel tablets are also used along with other medications to treat depression and in a class of medications called atypical anti psychotics. It works by changing the activity of certain natural substances in the brain. Seroquel is not for use in psychotic conditions related to dementia. Seroquel may cause heart failure, sudden death, or pneumonia in older adults with dementia-related conditions.
This information was quite upsetting to read, so I called Dr. Fox's office to ask about this. I was given an appointment to come in and speak with her.
12:00 p.m. - 1:30 p.m. - Left office to go see Dr. Fox. She told me that this particular medication is the best of this group of drugs - go ahead and get the prescription filled. Then she told me she was going to have someone come in and talk to me about having Joe assessed at the local behavioral site. It was determined that Joe would be a good candidate to be assessed and a phone call was made to let them know I was coming.
1:30 p.m. - 2:00 p.m. - Dropping off med prescriptions at Walmart to be filled and on to WBI.
2:00 p.m. - 3:00 p.m. - Information given to intake nurse. Went to pick up Joe at Senior Center to persuade him to come to WBI for initial assessment.
3:00 p.m. - 4:20 p.m. - Joe assessed by intake nurse.
4:30 p.m. - 5:30 p.m. - Dropped Joe off for balance therapy. I went back to Walmart to pick up Joe's meds.
5:30 p.m. - 6:00 p.m. - Went by to pick up fast food for our dinner and await the arrival of our home teachers at 7:30 p.m. Received phone call from WBI with number of psychiatrist that wants to see Joe. Need to make appointment as soon as possible.
Two hours of work for me = $20.00 minus taxes. The stress and strain is becoming greater every day.
12:30 a.m. - Arrive home from emergency room.
1:30 a.m. - Finally crawl into my nice warm? queen-sized mattress in the living room to go to sleep. And sleep I did, as did Joe. However, I reset my phone alarm to ring at 7:30 a.m.when it went off at 6:30 a.m. Not only was I still so sleepy and non-functional, but Joe was still sleeping like a log himself.
9:30 - 10 a.m. - When I got to the office and researched the information on the internet about the prescribed medications being added to his ever-lengthening list of medicines. One of them was Seroquel which is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions). These tablets are also used alone or with other medications to treat or prevent episodes of mania (frenzied, abnormally excited or irritated mood) or depression in patients with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Seroquel tablets are also used along with other medications to treat depression and in a class of medications called atypical anti psychotics. It works by changing the activity of certain natural substances in the brain. Seroquel is not for use in psychotic conditions related to dementia. Seroquel may cause heart failure, sudden death, or pneumonia in older adults with dementia-related conditions.
This information was quite upsetting to read, so I called Dr. Fox's office to ask about this. I was given an appointment to come in and speak with her.
12:00 p.m. - 1:30 p.m. - Left office to go see Dr. Fox. She told me that this particular medication is the best of this group of drugs - go ahead and get the prescription filled. Then she told me she was going to have someone come in and talk to me about having Joe assessed at the local behavioral site. It was determined that Joe would be a good candidate to be assessed and a phone call was made to let them know I was coming.
1:30 p.m. - 2:00 p.m. - Dropping off med prescriptions at Walmart to be filled and on to WBI.
2:00 p.m. - 3:00 p.m. - Information given to intake nurse. Went to pick up Joe at Senior Center to persuade him to come to WBI for initial assessment.
3:00 p.m. - 4:20 p.m. - Joe assessed by intake nurse.
4:30 p.m. - 5:30 p.m. - Dropped Joe off for balance therapy. I went back to Walmart to pick up Joe's meds.
5:30 p.m. - 6:00 p.m. - Went by to pick up fast food for our dinner and await the arrival of our home teachers at 7:30 p.m. Received phone call from WBI with number of psychiatrist that wants to see Joe. Need to make appointment as soon as possible.
Two hours of work for me = $20.00 minus taxes. The stress and strain is becoming greater every day.
Wednesday, January 11, 2012
Depression and Suicide
One day last week, I had to pick Joe up from the Senior Center and bring him home. They called to say he wasn't feeling well. I had no choice but to leave him alone. Since he'd already eaten there, I got him all tucked into bed, told him to stay there and left. About five hours later, I returned.
I'd not heard anything from him during that entire time. I didn't want to call and wake him up especially if he was sleeping really well. And, he didn't think to call me like I'd asked him to. So, as I drove up to the front of the house, I was almost afraid to get out of the car.
What if something had happened to him? What if he'd done something to himself? These were valid concerns as Joe continues to wrestle with depression and has voiced doing something to himself in the recent past. Would he really not love me enough to do that to me? I can't answer that and don't want to ever be faced with happening.
I am genuinely afraid that if circumstances presented itself and if Joe was in the right frame of mind, he would truly take his life. I've not voiced that out loud to family members. Only to Marla. Joe lost a law partner sometime back who hanged himself and Joe found him. I think that has haunted him since then. I had a friend whose teen aged son took his life a little over a year ago. There was a question/discussion as to the Church's stand on suicide. This is what I found...
I'd not heard anything from him during that entire time. I didn't want to call and wake him up especially if he was sleeping really well. And, he didn't think to call me like I'd asked him to. So, as I drove up to the front of the house, I was almost afraid to get out of the car.
What if something had happened to him? What if he'd done something to himself? These were valid concerns as Joe continues to wrestle with depression and has voiced doing something to himself in the recent past. Would he really not love me enough to do that to me? I can't answer that and don't want to ever be faced with happening.
I am genuinely afraid that if circumstances presented itself and if Joe was in the right frame of mind, he would truly take his life. I've not voiced that out loud to family members. Only to Marla. Joe lost a law partner sometime back who hanged himself and Joe found him. I think that has haunted him since then. I had a friend whose teen aged son took his life a little over a year ago. There was a question/discussion as to the Church's stand on suicide. This is what I found...
Although it is wrong to take one's own life, a person who commits suicide may not be responsible for his or her acts. Only God can judge such a matter. Elder M. Russell Ballard of the Quorum of the Twelve Apostles has said:
“Obviously, we do not know the full circumstances surrounding every suicide. Only the Lord knows all the details, and he it is who will judge our actions here on earth.
”When he does judge us, I feel he will take all things into consideration: our genetic and chemical makeup, our mental state, our intellectual capacity, the teachings we have received, the traditions of our fathers, our health, and so forth“ (”Suicide: Some Things We Know, and Some We Do Not, “ Ensign, Oct. 1987, 8).
I was very hesitant to read this to Joe because it was almost giving him permission if this is what he ever decided to do. With all his physical and mental limitations and his eyesight getting worse, I was afraid he might think he'd be justified if he wanted to end his life.
So, the other night after I'd not heard from him for that long period of time as I was pulling up in front of the house, I was afraid what I might find when I opened the door. All was well, but I always have that on the back of my mind when times get hard for Joe. I get scared when he says things like "Well, you won't have to worry about me much longer". or "Well, I won't be here when you come home today".
After last nights physical confrontation, I know I've got to do something and quick.
“Obviously, we do not know the full circumstances surrounding every suicide. Only the Lord knows all the details, and he it is who will judge our actions here on earth.
”When he does judge us, I feel he will take all things into consideration: our genetic and chemical makeup, our mental state, our intellectual capacity, the teachings we have received, the traditions of our fathers, our health, and so forth“ (”
I was very hesitant to read this to Joe because it was almost giving him permission if this is what he ever decided to do. With all his physical and mental limitations and his eyesight getting worse, I was afraid he might think he'd be justified if he wanted to end his life.
So, the other night after I'd not heard from him for that long period of time as I was pulling up in front of the house, I was afraid what I might find when I opened the door. All was well, but I always have that on the back of my mind when times get hard for Joe. I get scared when he says things like "Well, you won't have to worry about me much longer". or "Well, I won't be here when you come home today".
After last nights physical confrontation, I know I've got to do something and quick.
He Snapped!
I can honestly say that things have been going pretty well between Joe and I for the last few weeks - no drama happening in our home. Getting him back on his anti-depression medicine and having it kick it has made him into a new man. Physical therapy has been going well. His evaluation done last week shows marked improvement in his walking, strength and balance.
He's even gotten motivated enough and more confident that he asked to have his dialysis changed from the Monday, Wednesday and Friday schedule so that he can go to the Senior Center and participate in some of their classes i.e., Tai Chi, yoga, etc. He's also gotten on the computer at both the Center and the daycare center and doing some research about a program he saw on TV last week. He's been sleeping somewhat better at night since he's not being allowed to take naps. All these things have been a wonderful thing.
Yesterday was one of those wonderful days. I dropped Joe off at the adult daycare and he was going over to the senior center around lunchtime. I picked him up at the regular time for his physical therapy, took him and they worked him hard. Although he still has some small back spasms and soreness, he did well. After the class was over, I took him by and purchased him a Subway combo since I was going to a baby shower.
About 9:30 p.m. I went into the kitchen to test Joe's blood sugar for the final time last night. It was at this time when he started complaining about the locator bracelet on his wrist and talking about how he hated it. I ignored him since I'd heard this before. Then I asked him to put away his tape recorder and put the earphones in their plastic bag. He got irrate about this when I hadn't responded to the comment about the bracelet.
Joe: I'm going to take you to court to have it removed, you b---ch!
Me: Go ahead and I'll be glad to submit a list of people who say you need it.
Joe: Yep, people you've influenced and told them bad things about me. (Another b---ch thrown in there somewhere).
Me: Right Joe. You act so stupid sometimes. The bracelet is going to stay.
Joe: (More argument. More b--ch).
Somewhere in all of this I have stroked his beard and told him to just get over it and then went to sit down on the couch to continue watching the television. That's when he snaps! He comes over to the couch, pushes me over and then takes his fingers or fist or something and presses it into my lower right scalp behind my ear. It hurts! He's scaring me this time because it's so forceful and he's so mad. I tell him to get up off me as I'm trying to push him back and he finally moves. He goes to the bedroom and tells me that
Joe: Marilyn will be by to visit me tomorrow while in dialysis. (Marilyn is the social worker talked about in http://gritsinwyoming.blogspot.com/2012/01/he-snapped.html).
Me: Go ahead and talk with her. But if you do that, you won't be here tomorrow night. Do you wanna start all that all over again?
Joe: No comment.
Me: I might as well go ahead and be washing up your clothes to take with you (as I'm taking the small suitcase out of our closet).
Nothing more is basically said other than I finally convinced him to let me cut the bracelet off his wrist and he does.
I go to bed at 11:15 ish sleeping on the queen-sized camping mattress in the living room. 1:00 ish I'm woke up by Joe making noise going to and from the bathroom.
2:50 a.m. Woke up again listening to the sound of the blowdryer and full light coming out of the bathroom. I get up to check it out. It's Joe, who has just recently finished a shower, drying himself off with the blowdryer with the door open and no regard to light nor sound.
Me: What are you doing? What are you doing at this time of the morning?
Joe: What time is it?
Me: It's not even 3:00 a.m. It's 2:50 a.m.
Joe: I'm sorry. I thought it was 7:30 a.m.
Me: This is exactly what I'm talking about when I say you are acting stupid! If it was 7:30 a.m., don't you think I would be up? That I would have woken you up before now? Can't you tell it's still pitch black outside? 7:30 would have light! Get back into bed! I need sleep!!!
Joe: I'm sorry.
He then goes to the bedroom, shuts the door and I use the bathroom. I go to check on him and find that he's fallen on the floor when he tried to climb into bed. I help him in and cover him up and go back to my bed. Thank goodness he stays there until I wake him up at the correct time.
On the way to the daycare, I ask him if I need to call anyone i.e., Marilyn so I can give her my side of the story after he's spoken with her, or the DFS lady or the cops? He assures me that he's not going to talk to her. Only time will tell. My head hurts where he pinned my head down. I have a headache and a real heartache. What's going on? What's going to happen? I tell him that if this ever happens again, I WILL call the cops.
-----------------------------------
What am I going to do? I have worked with abused women and I am giving excuses for Joe just like those women do.
-----------------------------------
He's even gotten motivated enough and more confident that he asked to have his dialysis changed from the Monday, Wednesday and Friday schedule so that he can go to the Senior Center and participate in some of their classes i.e., Tai Chi, yoga, etc. He's also gotten on the computer at both the Center and the daycare center and doing some research about a program he saw on TV last week. He's been sleeping somewhat better at night since he's not being allowed to take naps. All these things have been a wonderful thing.
Yesterday was one of those wonderful days. I dropped Joe off at the adult daycare and he was going over to the senior center around lunchtime. I picked him up at the regular time for his physical therapy, took him and they worked him hard. Although he still has some small back spasms and soreness, he did well. After the class was over, I took him by and purchased him a Subway combo since I was going to a baby shower.
About 9:30 p.m. I went into the kitchen to test Joe's blood sugar for the final time last night. It was at this time when he started complaining about the locator bracelet on his wrist and talking about how he hated it. I ignored him since I'd heard this before. Then I asked him to put away his tape recorder and put the earphones in their plastic bag. He got irrate about this when I hadn't responded to the comment about the bracelet.
Joe: I'm going to take you to court to have it removed, you b---ch!
Me: Go ahead and I'll be glad to submit a list of people who say you need it.
Joe: Yep, people you've influenced and told them bad things about me. (Another b---ch thrown in there somewhere).
Me: Right Joe. You act so stupid sometimes. The bracelet is going to stay.
Joe: (More argument. More b--ch).
Somewhere in all of this I have stroked his beard and told him to just get over it and then went to sit down on the couch to continue watching the television. That's when he snaps! He comes over to the couch, pushes me over and then takes his fingers or fist or something and presses it into my lower right scalp behind my ear. It hurts! He's scaring me this time because it's so forceful and he's so mad. I tell him to get up off me as I'm trying to push him back and he finally moves. He goes to the bedroom and tells me that
Joe: Marilyn will be by to visit me tomorrow while in dialysis. (Marilyn is the social worker talked about in http://gritsinwyoming.blogspot.com/2012/01/he-snapped.html).
Me: Go ahead and talk with her. But if you do that, you won't be here tomorrow night. Do you wanna start all that all over again?
Joe: No comment.
Me: I might as well go ahead and be washing up your clothes to take with you (as I'm taking the small suitcase out of our closet).
Nothing more is basically said other than I finally convinced him to let me cut the bracelet off his wrist and he does.
I go to bed at 11:15 ish sleeping on the queen-sized camping mattress in the living room. 1:00 ish I'm woke up by Joe making noise going to and from the bathroom.
2:50 a.m. Woke up again listening to the sound of the blowdryer and full light coming out of the bathroom. I get up to check it out. It's Joe, who has just recently finished a shower, drying himself off with the blowdryer with the door open and no regard to light nor sound.
Me: What are you doing? What are you doing at this time of the morning?
Joe: What time is it?
Me: It's not even 3:00 a.m. It's 2:50 a.m.
Joe: I'm sorry. I thought it was 7:30 a.m.
Me: This is exactly what I'm talking about when I say you are acting stupid! If it was 7:30 a.m., don't you think I would be up? That I would have woken you up before now? Can't you tell it's still pitch black outside? 7:30 would have light! Get back into bed! I need sleep!!!
Joe: I'm sorry.
He then goes to the bedroom, shuts the door and I use the bathroom. I go to check on him and find that he's fallen on the floor when he tried to climb into bed. I help him in and cover him up and go back to my bed. Thank goodness he stays there until I wake him up at the correct time.
On the way to the daycare, I ask him if I need to call anyone i.e., Marilyn so I can give her my side of the story after he's spoken with her, or the DFS lady or the cops? He assures me that he's not going to talk to her. Only time will tell. My head hurts where he pinned my head down. I have a headache and a real heartache. What's going on? What's going to happen? I tell him that if this ever happens again, I WILL call the cops.
-----------------------------------
What am I going to do? I have worked with abused women and I am giving excuses for Joe just like those women do.
- I pushed him too far. But, I don't think I sparked that last night.
- Maybe he's got fluid coming back on his brain. (Called the doctor's office to move up his appointment. No can do).
- He's just way frustrated.
-----------------------------------
Opening Up A Can Of Worms
It was a bad morning getting us out the door. We were just getting into a new routine of Joe being dropped off at the adult daycare in the mornings. Somewhere the time slipped by, I was running late and the morning was just starting out to be really crappy.
Mid morning I got a phone call from the social worker at the dialysis center. M called to tell me that Joe was "having a bad morning" and she had found him crying. After asking him about what was wrong, he commenced to tell her apparently about the bad morning, that I had been yelling and screaming at him and threatening him bodily harm, etc., etc., etc. Over the weekend, Joe had done something so silly/stupid that I said to him..."Joe Weaver, if you don't behave yourself, I'm going to pinch off your nipples and eat them"! In his mental status, he apparently thought I was serious and told M that I had told him I was going to "bite off his nipples and eat them". He also apparently told her that he was going to/wanted to kill me/him/us.
Now, because of what Joe said, M was mandated and compelled by the State of Wyoming rules and regulations to report this "violence". She apparently called Adult Protective Services who in turn called the police department. I knew none of this and was, therefore, quite surprised when two uniformed police officers knocked on our door that evening and asked if I was Mrs. Weaver. I said "yes" and they asked to come in. Long story short, they said they had been asked to stop by for a "wellness check" for both Joe and myself. After a few minutes, they realized we were fine, no one was bleeding or dying and left. Then I got a phone call during the week from the Department of Family Services to set up and appointment for them to come by for a visit/interview the following week. Wow! We were now in the system.
Earlier in the day, M felt it her duty to tell me that we needed to make an appointment for marriage counseling and that she would leave a couple of numbers to some places that offered such a service. And she was doing follow-up conversations with Joe to see what actions were taking place. This is when I felt things were getting out of control and were not any of her business.
The State lady came the next week and everything went well, I assume since we not heard anything more from her. I didn't want anyone really getting into our personal background. And, since Joe had started to talk to M and had the nipple situation screwed up, I had no idea what his poor convoluted mind might think to say. I did not want to have to tell people about how Joe had acted towards me in the past - the picking up chairs and threatening to throw them at me, the near choking, the throwing the chairs, etc. I didn't tell her about all this. I've been afraid that Joe would be removed permanently from the home. I did explain, and gave her a copy, that I had only discovered a few days before that Joe had been off his anti-depressant pill since he'd come home from the hospital - that it had listed as a "discontinued" medication. A sudden and "cold turkey" withdrawl off of that drug causes agression, agitation, etc. So, I deemed that to be the cause of his needing to talk to M about how he had been feeling.
We have gone and spoken to the bishop about our marital stife in all this, but that bishop has now been released and we have a new one. We'll need to be going to see him and bring him up to speed on our live soon.
Mid morning I got a phone call from the social worker at the dialysis center. M called to tell me that Joe was "having a bad morning" and she had found him crying. After asking him about what was wrong, he commenced to tell her apparently about the bad morning, that I had been yelling and screaming at him and threatening him bodily harm, etc., etc., etc. Over the weekend, Joe had done something so silly/stupid that I said to him..."Joe Weaver, if you don't behave yourself, I'm going to pinch off your nipples and eat them"! In his mental status, he apparently thought I was serious and told M that I had told him I was going to "bite off his nipples and eat them". He also apparently told her that he was going to/wanted to kill me/him/us.
Now, because of what Joe said, M was mandated and compelled by the State of Wyoming rules and regulations to report this "violence". She apparently called Adult Protective Services who in turn called the police department. I knew none of this and was, therefore, quite surprised when two uniformed police officers knocked on our door that evening and asked if I was Mrs. Weaver. I said "yes" and they asked to come in. Long story short, they said they had been asked to stop by for a "wellness check" for both Joe and myself. After a few minutes, they realized we were fine, no one was bleeding or dying and left. Then I got a phone call during the week from the Department of Family Services to set up and appointment for them to come by for a visit/interview the following week. Wow! We were now in the system.
Earlier in the day, M felt it her duty to tell me that we needed to make an appointment for marriage counseling and that she would leave a couple of numbers to some places that offered such a service. And she was doing follow-up conversations with Joe to see what actions were taking place. This is when I felt things were getting out of control and were not any of her business.
The State lady came the next week and everything went well, I assume since we not heard anything more from her. I didn't want anyone really getting into our personal background. And, since Joe had started to talk to M and had the nipple situation screwed up, I had no idea what his poor convoluted mind might think to say. I did not want to have to tell people about how Joe had acted towards me in the past - the picking up chairs and threatening to throw them at me, the near choking, the throwing the chairs, etc. I didn't tell her about all this. I've been afraid that Joe would be removed permanently from the home. I did explain, and gave her a copy, that I had only discovered a few days before that Joe had been off his anti-depressant pill since he'd come home from the hospital - that it had listed as a "discontinued" medication. A sudden and "cold turkey" withdrawl off of that drug causes agression, agitation, etc. So, I deemed that to be the cause of his needing to talk to M about how he had been feeling.
We have gone and spoken to the bishop about our marital stife in all this, but that bishop has now been released and we have a new one. We'll need to be going to see him and bring him up to speed on our live soon.
Tuesday, January 10, 2012
Shampoo, Cream Rinse, The Second Shelf and Another Use For Duct Tape
With Joe's eyesight and thinking skills, I have had now had to place his shampoo in a distinctive, small spot so that he knows it's his shampoo and not mistakenly use my creme rinse for shampoo. I've resorted to purchasing red bottled shampoo and creme rinse so he can get it into his mind that red = stop - don't use. And, my bottles are placed in a different location that being right next to his.
Foods that I don't want him to use/get into are placed on the second shelf of the refrigerator. I'm trying to have him acclimated to a "hands-off" policy on this foods by putting them away from the other items he can utilize. Does it work? Most of the time, especially since I recently purchase two large plastic containers that fit on the shelf together. I can now place items into those and they become "invisible".
And, another use for duct tape? I use a large piece of white duct tape to keep the freezer door on the refrigerator closed. I then place various magnets in strategic places so that I can tell whether Joe has been in the freezer or not. Why? It keeps him from eating things he shouldn't and from making a mess looking for something when he grazes at night.
Foods that I don't want him to use/get into are placed on the second shelf of the refrigerator. I'm trying to have him acclimated to a "hands-off" policy on this foods by putting them away from the other items he can utilize. Does it work? Most of the time, especially since I recently purchase two large plastic containers that fit on the shelf together. I can now place items into those and they become "invisible".
And, another use for duct tape? I use a large piece of white duct tape to keep the freezer door on the refrigerator closed. I then place various magnets in strategic places so that I can tell whether Joe has been in the freezer or not. Why? It keeps him from eating things he shouldn't and from making a mess looking for something when he grazes at night.
Monday, January 9, 2012
Making Decisions - Last Hospital Stay of 2011
The first week in November Joe was admitted to the hospital again for ultimately finding out he had fluid on his brain. After everything he's gone through in the last year and a half it seemed as though he's just about exhausted every medical problem from the top of his fuzzy head to the bottom of his eight remaining toes. But, it seemed there were more things to go wrong with him.
This medical emergency was so much more different that anything I'd experienced with him before. There was more of an urgency - a crisis - an impending disaster that was spiraling quickly out of control. The ER doctor and staff must have felt the same as Joe was only in the emergency room for a very few minutes before being rushed to the intensive care unit.
I knew this was so much more different and critical than other hospital stays just by the way the doctors and nurses acted and the rapid settling into the ICU. And then it began.
I was asked if we had a Living Will on file with the hospital? Not on file, but we have one. Yes, I will go home immediately and get a copy and be right back. Then it was explaining the Do Not Resuscitate (DNR) policy. Did I understand that it might come to this point? Yes, No, I didn't. I didn't want to discuss this right now. "Mrs. Weaver you need to be prepared". Sign this consent for ______. Do you give us permission to ______?
Then after the worse was over, it was doctors talking to me about possible extensive rehabilitation in a facility for several weeks. Then it was another doctor talking to me about the possible putting Joe in a nursing home. All this was more than I felt I could handle. No more talking to people - no doctors, no family, no friends, NO ONE! I just wanted to be left alone and process what my mind could and would understand. I made one call. I called Marla - my dear friend who had gone through a similar situation a little over a year ago. She had everyones phone numbers of who I would call if I could. I gave her the facts - nothing more - and she made the calls to family and friends and for someone to come give us priesthood blessings. In the end, Joe got to come home virtually a new man. Between the spinal tap and the blessings from my Heavenly Father, Joe has been able to function a great deal on his own. He still has cognitive problems. He doesn't understand things dealing with time. He still has balance problems. He still has orientation problems. There are still so many things wrong that will never be right, but he's home.
What people won't/don't understand is that with all the decisions I have to make, my own thinking gets stuck sometimes. Making financial arrangements, choosing the right kind of services, filling out and signing immeasurable amounts of paperwork, trying to second guess what Joe might do next, figuring out ways to make his life easier and more manageable, trying to find life insurance on someone that no one wants to cover - I get overwhelmed by all the pros and cons of the various options. Sometimes I can't decide what's best. And, I'm trying to do all this while attempting to maintain some semblance of normalcy by holding down a low-paying job with no benefits. I do the cooking, cleaning, the grocery shopping and making sure that Joe goes to all of his appointments and has everything he needs when he is gone from the house. Every morning it's making sure that he has bus tickets, his medications, his lunch for after dialysis, his drink and snack for during dialysis, making sure that his pants, his belt, his shirt, underwear and socks are laid out and ready for him to put on the next morning. Some may argue that lots of people do that everyday. Yes, that's true and I know that I don't have it as bad as some others may. But, some may need to understand that this is my husband - I am not an old person nor am I a young one either. This is supposed to be the wonderful years of our lives and our marriage. Even Joe now recognizes that he is no longer like a husband, but rather like my child and that hurts - both of us.
What I've noticed is that the harder I push myself to decide, the more confused I sometimes get. If I'm not getting the results I need, it makes sense to stop pushing for a while. It makes sense to tell others that I will get back to them as soon as possible. I can set aside my deliberation and no something else until my mind clears or I can just sit quietly. I can pray and ask my Heavenly Father for direction, for some type of insight as to what I should and need to do. Eventually I will get my quietness and get my answer, my solution.
I look forward to 2012 in the hopes that maybe the worse is behind us. And, if it's not, maybe I've got an adequate amount of past experience under my belt to help me make those decisions I may be faced with in a calmer and more peaceful, tranquil way with complete faith that my Heavenly Father knows what I can handle.
This medical emergency was so much more different that anything I'd experienced with him before. There was more of an urgency - a crisis - an impending disaster that was spiraling quickly out of control. The ER doctor and staff must have felt the same as Joe was only in the emergency room for a very few minutes before being rushed to the intensive care unit.
I knew this was so much more different and critical than other hospital stays just by the way the doctors and nurses acted and the rapid settling into the ICU. And then it began.
I was asked if we had a Living Will on file with the hospital? Not on file, but we have one. Yes, I will go home immediately and get a copy and be right back. Then it was explaining the Do Not Resuscitate (DNR) policy. Did I understand that it might come to this point? Yes, No, I didn't. I didn't want to discuss this right now. "Mrs. Weaver you need to be prepared". Sign this consent for ______. Do you give us permission to ______?
 |
| This is one of the times that Joe was hallucinating and kept picking at his gown. He was not even aware that I was in his room. |
 |
| Joe kept pulling out his oxygen tube, trying to take out his I.V., and picking at anything else that was attached to him. Because he wouldn't quit, they eventually had to restrain his arms. |
What people won't/don't understand is that with all the decisions I have to make, my own thinking gets stuck sometimes. Making financial arrangements, choosing the right kind of services, filling out and signing immeasurable amounts of paperwork, trying to second guess what Joe might do next, figuring out ways to make his life easier and more manageable, trying to find life insurance on someone that no one wants to cover - I get overwhelmed by all the pros and cons of the various options. Sometimes I can't decide what's best. And, I'm trying to do all this while attempting to maintain some semblance of normalcy by holding down a low-paying job with no benefits. I do the cooking, cleaning, the grocery shopping and making sure that Joe goes to all of his appointments and has everything he needs when he is gone from the house. Every morning it's making sure that he has bus tickets, his medications, his lunch for after dialysis, his drink and snack for during dialysis, making sure that his pants, his belt, his shirt, underwear and socks are laid out and ready for him to put on the next morning. Some may argue that lots of people do that everyday. Yes, that's true and I know that I don't have it as bad as some others may. But, some may need to understand that this is my husband - I am not an old person nor am I a young one either. This is supposed to be the wonderful years of our lives and our marriage. Even Joe now recognizes that he is no longer like a husband, but rather like my child and that hurts - both of us.
What I've noticed is that the harder I push myself to decide, the more confused I sometimes get. If I'm not getting the results I need, it makes sense to stop pushing for a while. It makes sense to tell others that I will get back to them as soon as possible. I can set aside my deliberation and no something else until my mind clears or I can just sit quietly. I can pray and ask my Heavenly Father for direction, for some type of insight as to what I should and need to do. Eventually I will get my quietness and get my answer, my solution.
I look forward to 2012 in the hopes that maybe the worse is behind us. And, if it's not, maybe I've got an adequate amount of past experience under my belt to help me make those decisions I may be faced with in a calmer and more peaceful, tranquil way with complete faith that my Heavenly Father knows what I can handle.
Just When You Think...
that you've got things under control, you are reminded that things are never going to be the same. Case in point - I get up earlier than necessary in the mornings just to make sure that everything Joe might require for the day is found and gathered for him. Then I attempt to get showered and dressed with as little interruptions as possible so that I can try to be cool, calm and collected each morning. This is usually after spending a night of constant wakeups by Joe getting in and out of the bed, like last night.
This morning when I was almost ready, I told Joe that he could put on his jacket. When I was completing the last of my preparations, I called to let him know he could go on and get into the car and I would be there shortly. I told me he couldn't as he still didn't have his jacket on and needed help putting it on. I told him I'd help as soon as I could finish getting ready. A few seconds later that's when I saw him walking down the sidewalk to the car - one jacket sleeve dangling down is backside. I got out to the car, went to help him put his arm in the sleeve, discovered it wasn't even his jacket, took it off, told him to get out of the car while I went to get his jacket and start all over again.
It's times like this when I realize that things will never be the same as they were - that simple things as putting on a jacket is no longer simple.
This morning when I was almost ready, I told Joe that he could put on his jacket. When I was completing the last of my preparations, I called to let him know he could go on and get into the car and I would be there shortly. I told me he couldn't as he still didn't have his jacket on and needed help putting it on. I told him I'd help as soon as I could finish getting ready. A few seconds later that's when I saw him walking down the sidewalk to the car - one jacket sleeve dangling down is backside. I got out to the car, went to help him put his arm in the sleeve, discovered it wasn't even his jacket, took it off, told him to get out of the car while I went to get his jacket and start all over again.
It's times like this when I realize that things will never be the same as they were - that simple things as putting on a jacket is no longer simple.
Sunday, January 8, 2012
The Haircut
 |
| Joe decided to sneak off and shave his face though I'd asked him not to. He did anyway and this is the aftermath of it all. He shaved his hair up over his left ear. |
 |
Joe shaved off part of his moustache and left it all very uneven. |
 |
| He really shaved up over his right ear. He looked like a man who had just had a series of chemotherapy treatments. |
Someone Really Does Understand
"I hesitate to go to a regular gathering for prayer or worship even though the music and messages soothe my soul. It's comforting to be there, but I can't stay. In this safe and tender place, tremendous sadness, too long restrained, breaks loose. I can't hold back the tears. I slip out to my car and can barely see through the wetness to get home.
It's too much for me to stay and try to explain to everyone how tired I am, how much it hurts, how out of control everything seems. But I know it's good for me to go there from time to time. Even when I can't stay, I am cradled for a while by the sacred sounds and sights and silences. I feel the understanding, the hope, the eternal caring. The tears find release there and the grief pours out."
Some really does understand what I experience on a regular basis. Thank you.
Wednesday, January 4, 2012
It's A New Year
Thank goodness 2011 is over and done with. For me personally I don't remember a worse year in my life. A new year is supposed to be a sign of promise, of hope and new things and wonderful things to happen. Understandably the biggest and most over-whelming reason was due to all of Joe's medical problems. We did manage to go through the month of December though with nothing unusual or unexpected taking place. For that I am really grateful. Considering all that has happened to Joe in the last 1 1/2 years, I am scared when I think of what could happen this year. Though I try to keep a positive attitude, it's hard when so many times that keeps getting taken away from me. I do know that this hope for better things won't come from focusing on what might occur, so I'm going to try to be more positive.
We did go visit the kids in Utah for Christmas this year and even the drive to their home was uncomplicated and really quite nice. Joe managed to sleep through most of the trip which eliminated the need for several bathrooms stops and I could keep on driving.
Joe is still having some cognitive and reasoning problems and that still presents some challenges for the both of us. He still has problems getting up to use the bathroom at night and then finding his way back to the bed. We keep the bathroom light on all night with the door pulled to in an effort to help him navigate to the bathroom and I guess it's just hard for him to walk back across the hall to climb back into bed without becoming disoriented at times. I'm still trying to figure out how to solve that problem since I love a dark, cool room for sleeping and he's needing basically the opposite.
We did have our first medical problem yesterday though when he got up during the early morning hours. He had gone to sleep on the couch, was on his way back from the bathroom and lost his way in the living room. He tripped over something and hurt his back causing it to start having spasms. They were so strong you could see his body move. A call to his primary care doctor said to take him to the ER, but since I had given him a pain killer they seemed to have backed off. I was left in a dilemma as to what to do with him as I needed to go to work and I couldn't take him to the adult daycare or leave him at home by himself. I finally gave in and called a wonderful family from the church and Doug came over and "Joesat" for me.
When I got home, Joe had slept most of the day on a heating pad and seemed so much better. Before going to bed, I gave him another painkiller and both of us managed to sleep all night long. Ahhh, this is what a good night's sleep feels like for both of us!
We did go visit the kids in Utah for Christmas this year and even the drive to their home was uncomplicated and really quite nice. Joe managed to sleep through most of the trip which eliminated the need for several bathrooms stops and I could keep on driving.
Joe is still having some cognitive and reasoning problems and that still presents some challenges for the both of us. He still has problems getting up to use the bathroom at night and then finding his way back to the bed. We keep the bathroom light on all night with the door pulled to in an effort to help him navigate to the bathroom and I guess it's just hard for him to walk back across the hall to climb back into bed without becoming disoriented at times. I'm still trying to figure out how to solve that problem since I love a dark, cool room for sleeping and he's needing basically the opposite.
We did have our first medical problem yesterday though when he got up during the early morning hours. He had gone to sleep on the couch, was on his way back from the bathroom and lost his way in the living room. He tripped over something and hurt his back causing it to start having spasms. They were so strong you could see his body move. A call to his primary care doctor said to take him to the ER, but since I had given him a pain killer they seemed to have backed off. I was left in a dilemma as to what to do with him as I needed to go to work and I couldn't take him to the adult daycare or leave him at home by himself. I finally gave in and called a wonderful family from the church and Doug came over and "Joesat" for me.
When I got home, Joe had slept most of the day on a heating pad and seemed so much better. Before going to bed, I gave him another painkiller and both of us managed to sleep all night long. Ahhh, this is what a good night's sleep feels like for both of us!
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