Tuesday, June 30, 2015
So many of you have commented and privately messaged me and have wondered when I was going to come back to writing. I had plans to stay away for a while and regroup but I realized that I can't totally abandon this blog. In the years past, I have written every single day and have told you how Thomas is doing and how I've been doing too. Essentially I have made Thomas your child too and I know that you all care about him and want to know how he's doing. So, I thought I'd write today to fill you in a little bit on what's going on.
It's interesting when you step away from this illness and the constant vigilance for a while, you seem to get a little perspective. The truth is that even though I've been gone from here and I said I was checking out of Thomas's life that there has still been a part of me keeping an eye on Thomas. I think it's impossible to turn our back on this illness and how it affects our loved ones. I did make a concerted effort, however, to stop being so involved in all things Thomas and while I have felt a special kind of ache inside because I've stepped back, it has done some good to do that. I am here to say to you that I believe we all need to "check out" from time to time to get our bearings back. This illness is so all-consuming and it's so easy to get lost in it. I know many of you don't have the luxury of being able to "check out" because the demands from your loved one's illness make that virtually impossible. I can guarantee you that if Thomas were seriously psychotic that I wouldn't have done what I did. As it is, he is kind of cruising along in a kind of zone where things are not great but they're not terrible either.
One of the things I have noticed with my "absence" from Thomas's life is that he has turned inward even more and has isolated himself a bit more than usual. I want it made clear that I haven't completely walked away from him and ignored him, I could never do that. Even with the distance between us, though, I can see that he's struggling. He and I have not had a single conversation about the changes in me but because we are so tied to each other I know that for him, the distance has not gone unnoticed. I told him a few days ago that I had stopped writing the blog and that was met with an interesting response. He sat there silent for a minute and then sadly asked,
And then seemed kind of sad. I asked him how he felt about that and he told me he didn't know. From my point of view I saw a young man who was disappointed but didn't feel like he could say anything about my leaving. I know that a part of him must like that people like to hear about his life and I think he felt a little bit like I was disappointing everyone by leaving. I think we all need to feel cared about and I think he has felt like he has all of you in his life and that you care about him. As such, I promised him that I would come back every now and then and that I'd let him know what people were saying. This seemed to settle him some.
Along with his increased isolation has come a restlessness that doesn't ever seem to go away. He disappears out the front door a lot with his mp3 player and headphones and sits on the porch for a half an hour or so a few times a day. I don't know what's up with that and I haven't asked. I am working on not being so intrusive in his life so I am letting him go about his life without my eagle eye on him. Well, let me be honest here, my eagle eye is still on him, it always will be, but I am not asking him how he's doing as much.
I know that he is dealing with a few other things but I will save that for another post. I will tell you that he continues to work but he only works one day a week and he hates every second of it. He no longer cares about the money he earns and sees no reason, really, to go to work except for the fact that it gets him out in the world dealing with people. I really don't know how to help him want to go to work so I have left it alone but I am watching it. You might think that the loss of desire to work has been because he gets Social Security but he doesn't see that money except when it comes time to buy something necessary for him like food or jeans or something like that. None of the money is spent on frivolous items and he knows the money he earns at his job is for that and still he doesn't seem to want to make the money to get those fun items like video games and such. I worry that he's disappearing inside of himself.
So, that's a bit of an update on things here. I am planning to begin to write again but only once in a while. If what people are saying is true, I am told that I make a difference with what I do and if so, I want to keep doing whatever I can to make that difference in people's lives. This blog and the Facebook page are still all about advocacy and telling Thomas's story along with mine and I think that I have something unique here in that I am someone who pulls no punches when it comes to the truth about what it's like to live with this illness.
I am never far from here on this page and I certainly haven't abandoned Thomas. He will always be inextricably tied to me and as long as it is within my power to help him, I will. As I said, I just think he and I both need a little distance.
Friday, June 19, 2015
(Picture Credit: florinopran.ro)
I write today because I want to tell you all something. You have been great blog/page members and you have been so supportive of Thomas and I so I feel like I need to explain something.
Something odd is happening in my life lately. Slowly I have been checking out of my life. Piece by piece I have let go of the things that I used to love and what's baffling is that I don't know why this is happening. I talked to my sister and described to her what I'm about to describe to you and she told me I sound depressed. The thing about that is, I am not mopey, I am not crying, I don't sit around all day and watch TV and I'm not over eating which are all typical signs of depression for me. Instead, I am keeping up with my exercise, in fact, I've added a few more miles to my workout and I am spending a lot of time with my mom which is keeping me social. I'm out and about in town running errands and having coffee and when I'm home, I'm dressed with make up on and ready to go out if need be. I have very little down time lately.
What has been happening that is different and is the hallmark of my checking out is that I haven't been present on this blog and on my Understanding Schizophrenia Facebook page. Maybe you have noticed and maybe not but I am struck by my lack of ability and motivation to keep it up. For me, with my blog, this all began with the conference. I was so excited about it and felt so honored to be there and I learned a lot from it but somehow it took something from me too. I fought for whatever it took, tried to bring life back to my work here and I have fought a losing battle that's slowly chipping away at my desire. I was offered, by PsychCentral, an opportunity to write a couple of articles for their website and again, like with this blog, I have completely dropped the ball, finding it impossible to make contact with the founder and CEO whom I met at the conference who told me he'd take my work directly and get it published. This is a dream of mine and somehow I have lost touch with it all.
Beyond that, I have all but completely dropped out of my very best friend, Steve's, life and have only in the last day tried to rekindle our friendship. He has been with me through everything and deserves so much better than the kind of friend I am being but somehow there is a block I have put up that I can't seem to tear down. I love this man dearly and he is truly amazing and I wish I could figure out what's happening to me. It has nothing to do with anything he has done because he has been nothing but supportive of me but I noticed, after a while of me not returning his phone calls, that he finally just stopped calling. I don't blame him one bit. I wouldn't call me either.
Most importantly and probably saddest of all, I have pulled away from Thomas. With my life being so busy, I haven't been around much to see him. When I am home I am usually running around to get ready to go somewhere. I spend a little time with him but not much. He's handling this mostly by feeling lost, like I described in an earlier post, and I am letting him go through it because I don't know how to help him. I don't see any other symptoms emerging however I am not around him enough to keep a close eye on him either. He is remembering his meds now, though, and he's gotten on a shower schedule of showering every Sunday and Wednesday (still not enough but at least he's on schedule). I see, by looking in the trash, that when I'm gone he is snacking like crazy on all sorts of junk but I don't call him out on it much because I don't want to cause a problem with him where he begins to hate himself for not having better self control. He knows what he needs to do to stop the weight gain and even lose the weight and he doesn't need me policing the whole thing.
Then yesterday, for the first time in months and months, instead of going to therapy with him, I dropped him at the door and left. Part of my checking out is this need to get out of his life and get out of his therapy. I'm not sure anymore what I contribute to the whole thing other than to remind him to talk about certain things but I think he needs to fly solo with this for a while. At least that's what I'm telling myself now.
Beyond that, now, I am in therapy. It's pretty intensive and I can't say that I blame therapy for my checking out. It takes up only 2 hours of my week but does provide me with things to think about between sessions. It doesn't consist of talking about Thomas, about parenting him, or about being his caregiver, it has been basically some "me time" to work through other things like my continued grief about losing my dad.
There are many more things I am checking out of but the two things that most disturb me are checking out of my blog/Facebook page and Thomas's life. Somewhere down deep inside I feel horrible for not doing what I've done for years--caring for Thomas--and for 2 years--writing this blog. But I am gone now. The Melanie I once knew is gone and I see her somewhere in the shadows behind me but I can't seem to go back for her.
So, all of this, this whole post for today, is my explanation for why I have dropped the ball on this blog and neglected all of you. I know that many of you depend on me for various reasons and I feel terrible for abandoning you right now. All I can ask is for you to understand that right now I am finding myself. I am not happy about the state of being that I am in but I seem unable to change it as I watch myself disengage from my life piece by piece, day by day. What I can tell you is that I am not shutting this blog or my Facebook page down and when I can, I will post something but it's just not going to be the stellar page that I felt I once maintained. My hope is that I will not lose you guys in the process and that you'll hang in there while I search for what I am missing.
Every single day you are on my mind. You are not forgotten.
I'm just lost right now.
Tuesday, June 16, 2015
(Picture Credit: panhandleherald.com)
Yesterday Thomas had to work so I took the time in the car with him to talk to him about things. We ended up having quite a heart to heart about how he sees his future. I couldn't help but feel like schizophrenia was winning the battle over his life as the conversation went on but I tried to make what he saw as his future something worth living for.
We got to talking about him and his girlfriend who lives in Oklahoma (We live in Idaho). He mentioned that either she would move out here or he would move back there. I jumped on that revelation because I never thought it could be a possibility that she would move here. I told him that I thought it would be wonderful if she moved here because I could help her out if she ever needed it. You see, she has autism and struggles with a few limitations. I worry a lot about her when Thomas is sick because she worries so much about him. She's very sensitive and loves Thomas a great deal and like everyone, I am sure, she worries about how to help him feel better. I told him that I thought it would be a good idea for her to be living here in case he had an episode. I told him that I felt like she would need my support to help her help him during those times. For so long I've lived in fear that Thomas was going to move away to a family that doesn't have the first clue how to help someone with schizophrenia. I think there are many loving people who care a great deal but they just aren't equipped for the realities of schizophrenia at its worst. Having him here would keep him protected from the chaos of trying to sort out an episode and decide what to do in critical situations.
We also talked about how it would be better for him to stay here where he wouldn't have to give up his doctors and where things were familiar and there would be a little less stress. Not that having his girlfriend out here wouldn't be stressful, all relationships are, but having me here to help out wherever possible would be good. I told him they could move into one of the cute little "pill box" houses (little 2 bedroom, basically square houses) that we have around here and have a nice quiet life together. He smiled at that, I think he liked the pill box house idea, and he really felt like staying here would be better for him.
Then he outlined his girlfriend's skills one of which is the ability to hold down a full time job and the other was that she could drive. I asked him if she minded that he didn't have a full time job and he said she understood why. That is so good but I'm not sure how that would play out in the real world when they're struggling to pay bills. I can't imagine Thomas ever holding down a full time job but perhaps the future will bring something different.
Then as we sat in the drive thru of Dairy Queen to get his dinner, I spotted a mom carrying a baby and I made the comment,
"They're very cute when they're like that."
And he thought I was talking about how little they are. I told him that what I meant was that they're cute when they're smiling but life isn't always that way. I explained to him that I supported if he and his girlfriend, once married, wanted a baby but I wanted him to understand the realities of it. I told him how very hard it is in the middle of the night when they are crying and they want to be fed or changed. I told him that generally the men don't get up to care for the baby so the mom has to. I told him that while he's getting his sleep, his wife is up taking care of the baby and she is tired. Oh how I remember well the nights I was up, dead tired, holding Thomas in my arms and rocking him and, to be honest, hating his dad for not getting up "just this once" to help me out. I told him that his wife would always be tired and that would cause some grief in the house and that grief could cause stress that frankly neither of them, with their afflictions, could deal with. I told him things might be different someday but for now, if they were to get together any time in the next couple of years, that having a baby would be a mistake. I wanted to be so careful about making it clear that he didn't have to worry about possibly passing on his schizophrenia to his child but, to be honest, I have read a lot of research that says that autism and schizophrenia along with bipolar and about 4 other illnesses are genetically linked. With Thomas having schizophrenia and his girlfriend having autism and me having bipolar and his biological dad having issues, I think Thomas and his girlfriend having a baby might be the perfect storm for some unfortunate genetic mixing that might result in a child living with an illness of their own. It's hard enough to be me, for example, trying very hard, and sometimes failing miserably, to take care of Thomas but to have the two of them trying, it seems like it would put a lot of strain on the relationship and on their mental health. I really can't say how it would turn out in the end, if the baby would have any issues at all, but the odds scare me and worry me for both Thomas and his girlfriend.
Thomas heard me out about all of this and seemed to take it in okay. The very worst thing I can be, in my opinion, for Thomas, is a dream destroyer. I don't want to take his potential from him but there is a fine line between keeping a dream alive and facing reality. I tried yesterday to find that balance and I think, for the most part, I did okay. It's such a delicate conversation to have but they need to be had.
So, who can say for sure what the future will bring. Maybe his girlfriend will move out here and maybe she won't. Maybe the relationship won't make it for many different reasons and things will be different for Thomas. All I can do is try not to destroy too many of his dreams, try to give him hope about his future and to encourage what it is possible for him to do within the parameters of his illness. I want him to have everything I have had and more if possible but facing reality is integral.
Monday, June 15, 2015
(Picture Credit: holt510.com)
What do you do when you're lost and you can't find your way back?
What do you do when all you can do is wander in circles unsure of what to do next?
Well, Thomas has been like this lately and I haven't the first clue how to help him. Last week with Thomas's change in the "weather" of his symptoms, one of the symptoms he grappled with was this sense of feeling lost. I know just what he feels because sometimes I feel it myself. For him, though, it manifests every morning and what it looks like is a young man wandering the house unable to take direction from me about what to do. Everything I suggest for him to do he hesitates, perhaps considers it, and then says it's not something he wants to do. I hate when this happens to him because just like him, I don't have the answers. I watch as he wanders around the house with this blank look in his eyes and he's slow and methodical in his steps and in time I end up having to do something for him to knock him out of this feeling. Usually I begin with a big hug.
My best answer I have found is to suggest that I make his breakfast for him. He always seems to settle on that but as I'm making it, he's still wandering around. I'll get him into the kitchen to take his meds and he'll wait while I prepare his power smoothie. It's times like these that I put extra protein and extra fiber into them in the hopes that somehow that'll get him out of this lost feeling. I know, it doesn't make much sense, but to see him like he is, I become desperate to find a way to take the feeling away. Once he has his smoothie in hand, he disappears into his room to watch YouTube videos and drink his smoothie. I know it's not the cure-all but it does at least get him going a little bit.
I'm really not sure what is going on here. I can tell you that for myself, it feels like I can't settle on any one thing, my brain is scrambled and nothing sounds like anything I want to do. Just like Thomas, I wander the house looking around hoping something will grab me and pull me out of my lost-ness. It was really sweet of Thomas a couple of weeks ago when this phenomena was happening to me and he picked up on it. He followed me for a little bit and then asked me what was wrong and I told him I felt lost. There's nothing like having someone who totally understands what you're feeling. At that time, he asked me if I needed a hug and I gladly took one and I held him at arms length afterwards and I told him,
"See? I know exactly what you're feeling when you're lost."
We stood together in a kind of understanding of each other's struggle. It really is pretty nice and I am so grateful for his company. The other thing it shows me is the level of empathy that Thomas is capable of showing. So often he is wrapped up in YouTube or something or he's lost in the negative symptoms of his schizophrenia that he seems totally disengaged from life so I'm never sure how much in touch he is with people around him.
I gave some thought this last weekend to what was happening with Thomas's lost feeling over the last week or so and I came to the conclusion that perhaps this time, it's because when he wakes up, I'm already in the middle of getting ready to go somewhere and I don't spend a lot of time with him before I'm off to do what I need and want to do. It must be hard for him to wake up to a flurry of action and he's still trying to shake off the 14 hours of sleep he just came out of. I have another busy week this week so I'll keep an eye on this and I'm hoping that I am right about what I am thinking is causing this. I'm not exactly sure how to remedy it since often the places I go, I have to go to but I'm going to try to be mindful of how I can make this transition from sleep to wakefulness to finding me rushing around the house and then finally leaving, an easier time for him.
In the meantime, both he and I share something that few understand. We get lost from time to time but are found again in each other's hugs and a shared understanding of what each of us feels.
Thursday, June 11, 2015
(Picture credit: syracuse.com)
I want to start today's post off by saying how much I appreciate all of you and the work you do for my page by sharing the information that I provide. Each 'share' is important to me because it means we are getting the information out there. I love my page and its mission and you guys help me complete that mission every single day.
As for life here in the Emery/Jimenez house, things have taken a turn.
But Dr. K. has a wonderful analogy that schizophrenia's symptoms are like the weather. They come and go and they change all the time. When he said that a while back it helped me to relax a little about the symptoms that pop up here and there. It makes sense. Of course they're like the weather, right? Isn't everything always changing in one way or another?
For Thomas the weather has turned a bit cloudy in the last day or so. He has gotten a whole host of problems from anxiety to agitation to a feeling of being lost to depression. I always hate the change in the "weather" for Thomas. I can live with my own ups and downs but he really seems to suffer through his own. I made a mistake yesterday that didn't help things very much.
Thomas and I were filling our pill cases (he's taken over doing his own and does a great job!) and I began talking to him about his grandma and her upcoming surgery. I thought he could handle it and as I talked he listened intently and didn't seem to be affected by it. However, when we parted ways, within minutes, he was back by my side complaining of moderate anxiety. At the time I didn't know what had caused it but then it hit me. I had gone a step too far in telling him about his grandma. Her surgery, which takes place today, is a serious surgery but one that won't require a hospital stay. It's scary and she'll be in a lot of pain afterwards but it could be worse. I broke down for Thomas what the doctors would be doing and I thought in doing so that I was making it very clinical and black and white and I kept emotion out of it. I thought keeping the emotion out of it was the key but I guess I was wrong.
Throughout the day he fought anxiety and since he had to work last night, the anxiety was a bit higher and his fears centered around crowds in the store and his accompanying paranoia about the government coming to arrest him. I wanted to kick myself. Why haven't I learned yet to keep him out of potentially anxiety inducing information?
So I checked in with him throughout the day and monitored his anxiety level and gave him things to do to take his mind off of it but by dinner he was very quiet and lost somewhere in his mind. I asked him if he was okay and he says he was but he was awfully quiet. As I took him to work I thought to myself that I'd be coming to pick him up sometime into his shift. The call for that never came and he even ended up walking home by himself in the dark.
I don't really know what to make about this change in the weather. It wasn't just yesterday's conversation about his grandma's surgery, he's been struggling for a few days, but he seems to be hanging in at this low grade unrest. I'm not going to worry yet that it might turn into something more--part of my new zen approach to his illness--but I am going to keep an eye on him.
Tuesday, June 09, 2015
(Picture Credit: incrediblediary.com)
Would you cross this bridge? Would you be able to look at it stretching across a rocky river gorge with whitewater swirling beneath it and take the first step? Would you trust its weather-worn boards and cable holding it together to hold your weight? Would you do it? And once on the other side, would you come back?
I found this picture a while ago and I posted it to my Pinterest as something I wanted to do before I die. This bridge can be found in Switzerland and to me it looks incredibly scary. I've thought a lot about this bridge, and others like it that I've found, and I have questioned whether or not I could go through with walking across it. Then this morning I thought about this bridge again and I thought about my life and that of all of us. How many of these bridges have we stood at the beginning of when it comes to our loved ones with schizophrenia? How many of us find ourselves, now, out in the middle of it's treacherous expanse? How many of us have gotten to the other side and found courage to head back across it? I look at this bridge and I see our lives in their varied states, each of us either
scared to death to take the first step
(we just learned our loved one has schizophrenia)
or we're standing, trembling in the center of it as it swings
(our loved ones are in the middle of active psychosis, they're meds aren't working, they're suffering and we are powerless to help)
or we're standing on the other side, looking down at the water below, thanking God we survived the crossing
(our loved ones are stable and we are learning how to live again, both us as caregivers, and our loved ones living with schizophrenia).
We live in a world different from many others. Our children and loved ones have a life altering illness. From the time the diagnosis came through we have been through the gamut of emotions and have stood by watching as our loved ones became lost to the illness and then eventually found their way out of it for a time. We face this bridge every day of our lives.
I write this today to remind you of something. All of us have stood before this bridge, countless times, and made the decision to cross it. Even those of you standing at the beginning will cross it, no matter how terrified you feel right now. Across its span, from edge to middle to edge, we all see each other taking brave steps to get through a day, give support to our loved ones and find hope in the possibilities that lay before us. And to those of you living with this illness, your life is a constant struggle, if not with the positive symptoms like hallucinations and delusions, then with cognitive symptoms that hold you back from what you really want to do. You are the bravest souls of all of us because you face this illness head on each day and somehow, in a way that leaves us as your caregivers in awe, you get through a day and live to fight yet another one tomorrow. You do this over and over, crossing that bridge, and you teach us how to be brave, how to take that first step, how to hang on when the bridge is swinging and the river roars below and you teach us that there is another side to be reached when you conquer the monsters of your mind, even if it's just to find a way to ignore the voices that torment you constantly.
We are all looking at this bridge and in the end, every last one of us is a brave soul, a pioneer, a conquistador and in spite of its scariness, the bridge holds our weight and it teaches us, over and over, that in one form or another we are beating this illness.
Be brave my friends.
Monday, June 08, 2015
(Picture Credit: messiahhistory.wordpress.com)
I've got to start this by saying that Thomas has been doing really good for the most part. He still struggles with cognitive issues but I know those will be around for a while, if not forever, and we are left with working on those day by day. Thomas is making a real effort to beat them by doing things that challenge him but he still struggles with a few things. I've got to say, though, if that's the worst that we have to deal with then we aren't doing so badly.
What I wanted to write about today was some news from Thomas that Dr. K. and I received in therapy last week. With Thomas's paranoia down to a 1 out of 10 and other facets of the illness either non-existent or very low, Dr. K. asked Thomas about what his goals might be for his future. We're back to that.
Finally we can look to the future again and make some tentative plans. Dr. K. went through some possible ideas for Thomas and as usual came back to taking a college course. This is where, for ages, I have cringed because one of Thomas's prominent delusions was to be a revolutionary and he was wanting to back that with an education in political science. Back then I had visions of Thomas going to college, getting wrapped up with people that weren't good for him, who reinforced his delusions and who didn't understand how sick he was. Part of me almost wished he would never go to college just because of how entrenched his delusions about being a revolutionary were. In therapy on Thursday, all of that changed. When Dr. K. asked Thomas if he still wanted to take a political science class Thomas announced that he'd rather take a history class. Both Dr. K. and I were taken aback. This was new information.
A history class?
As it turns out, Thomas says he now wants to be a historian.
How cool is that?
There's no better thing, in my opinion, for Thomas to pursue because it's all about learning about history and getting a general education and not about reinforcing a delusion. Well, at least I'm not aware that he's reinforcing a delusion right now by taking history classes. One never knows though. As it is, though, I'm taking it completely at face value and embracing this new interest.
With college history courses on the table now and an upward trend in decreasing schizophrenia symptoms, I really can't ask for anything better right now. To me, it's almost like this round of stability sneaked up on me. It's probably been going on for a while but I have been away from the house so much lately that it's probably been around for a while. I made a decision a few weeks ago to start to focus on my own life a little bit more and as such I have left Thomas to build a little bit of a life of his own. It's been good for him to spend so much time alone, as far as I can tell, and it's been good for me to see what it's like to have a life again.
It's summer now, the sun is out every day and we are seeing new life. The best thing has been the death of a long held delusion and the beginning of a new life for both Thomas and I which includes, for him, a new found interest in something healthy for his mind. This time I'm not even going to worry about what might go wrong, at least not like I used to, and I'm going to enjoy this new life for both Thomas and I.
Now, if only we can keep Dr. N. from encouraging a drastic change in medications, we'll stay on the right track for a while.
Friday, June 05, 2015
Yesterday was meds day for Thomas and I went up there with him thinking all would go smoothly since Thomas seems to be doing well. I wanted to talk to Dr. N. about his weight gain but as his mom, that was the only "complaint" I had apart from the cognitive symptoms which we all know there is no meds for. As usual Thomas went in by himself and I waited in the waiting room.
It wasn't long until Dr. N. came out and asked for me to come in and I sat down and was blindsided by the announcement that he was thinking of changing both of Thomas's antipsychotics (Clozaril and Latuda).
It turns out that Thomas has been salivating a lot more at night since the increase in clozaril and he isn't happy with that side effect. I get that. I'd hate that too. Apparently, however, that was grounds for completely changing meds.
Aren't there any other solutions besides that?
I wouldn't be me if I didn't express my dismay about that prospect and Dr. N. kind of slowed down his thinking about that. I told him that when we were changing Thomas's meds last time, it was excruciating for both Thomas and for me as his mom watching the whole thing happen. I told him that I didn't understand why, now that Thomas is doing better, we should do anything with his meds. We go through this a lot with Dr. N.. Part of me wonders what exactly his motivation is. I wonder if he's being wooed by drug companies to get his patients on their drugs but then I also know he doesn't like it when someone is on so many pills. Either way, it's no excuse for changing meds that work, in my mind anyway.
He suggested 3 different meds two of which I remember which are Fanapt and Invega. I know people on Invega but this Fanapt I know nothing about. What would be in store for Thomas with these new meds? Needless to say, I argued with Dr. N. (nicely, of course) that I didn't see any reason for ruining Thomas's stability and he told me that he would think about what he wanted to do. Thomas is on board with changing his meds but his main motivation is to stop the nightly salivating.
Dr. N. did finally decide to prescribe something for the salivating so we're going to give that a try, I guess, for a while. I don't know what that'll bring in terms of side effects though. He also ended the session by telling us that he was going to give a lot of thought to how he could change Thomas's meds in a cautious way to minimize any relapse.
But no thank you. Not if it's up to me.
Which it isn't, of course.
I left the session though asking,
"Why do we have to keep doing this?"
I want to scream sometimes.
Needless to say, I had a talk with Thomas on the way home and I told him that he didn't remember the last time we changed meds. I told him that it was excruciating to watch and for him to go through. I didn't tell him this but I remember seriously considering having him hospitalized so that they could get him stable on meds faster. I didn't want to have to send him away but right before my eyes he was falling apart and it was killing me!
We will see what happens in the next couple of weeks. Thomas's next appointment with Dr. N. comes up then and we'll see what he's decided. If Thomas decides to go ahead with the change in meds, I'm going to have to go along with it and I'll be the one picking up the pieces. I really love Thomas's bright eyes lately, I would miss them.
Tuesday, June 02, 2015
(Picture credit: aminerecipes.com)
I have been away for a few days working on some personal things about my life outside of Thomas. I have decided to take on some serious counseling and as any of you who have had counseling before know, it can--and is for me right now--be a lot of hard work and work that isn't always easy. I thought my days of intensive therapy were over years ago but it seems like there is a lot still to work on. As such, I haven't been writing my posts here because my mind is filled with processing a great deal of things about my life both currently and a bit from the past. I wanted, however, to write today to let you know how Thomas is doing in the last few days.
To begin with, he is doing relatively well. He has moved from being on his laptop in the living room back to his bedroom and he's quite busy in there doing things. He filmed a YouTube video that he wants me to post here but I'll admit that I haven't had time to go and watch it first. I'm not sure what it's about so I don't want to put it out there if I need to be protecting Thomas instead. He also just finished up putting one of his Gundam models together. If you don't remember or if you are new to my blog, Gundam models are these...I call them robots...that come from Japan and all of the directions are in Japanese. Somehow Thomas still manages to get one put together. Here is one that he's built in the past just so you get an idea.
This one was the last one he built and he proudly displayed it for his "Friday's With Tom" blog post a while back. When I get a chance I will take a picture of his new one and post it.
Beyond that I now have him making dinners as much as possible. We still haven't gotten our act together mostly because I haven't been around much, to plan meals on the 3x5 cards that were a plan of Dr. K.'s. Instead, I thought in the meantime, that I would just have him cook what Dan and I decide for dinner in the morning before Thomas gets up. So far he has made lasagna and garlic bread with a salad (he cut up the carrots for the salad himself--a brave act on his part since he hasn't liked working with knives in the past). He also made what we call taco rice which is wild rice with taco meat on top and sprinkled with cheese and we had my mom's canned peaches with that. What I've done is basically have Thomas shop in our house for the ingredients and then put it all together. He did really good with that and that is what we had for dinner last night. Needless to say, once again, he had the opportunity from both Dan and I to hear what a great job he did. All of this is giving him confidence to do it all over again sometime.
In therapy last week Dr. K. also wanted Thomas to try to learn to work with the BBQ grill and to see how it gets lit and to see it's behavior when it is lit. He was extremely afraid of the fire but when Dan went out to grill on Sunday, Thomas went out there with him and Dan patiently taught him how to light the grill and patiently and lovingly taught Thomas about how to work with the fire. I loved this because Dan isn't always the best and most patient with Thomas so for the two of them to have this father-son time together made me happy. Thomas came inside after learning about the grill and he was very excited. I could actually see a point when he might be able to make a hamburger on the grill. I would be so proud of him if he could do that.
Beyond all of that, his cognitive difficulties remain and we are working on them here and there. I watched him as he looked for our rice cooker on a shelf in a very cluttered room and I could see that newly discovered visual neglect in play but I was quicker this time to point out that he has this limitation and that he needed to be sure to look everywhere and he finally found it. I think right now the visual neglect is the most disturbing thing of all to me. I suppose it's because it's so new, or rather so newly discovered.
So, today is another therapy appointment for me and that means another day on his own for the most part. He seems to be handling my extended absences well and as such I have allowed myself to be away a little more often. I know I won't always have the freedom to leave home because he'll be sick again someday but for now, I am taking advantage of his strength and independence and doing some things that make me happy or that need to get done.
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