Thursday, April 12, 2012
Would you know what I meant if I asked you how it would be to live with a person that is unable to feel emotions? Well, let me try to tell you. It sucks. Due to the damage done to my husbands brain, it is impossible for him to "feel" emotions anymore. Occasionally he gets angry and sometimes he might smile a little, but for the most part, nothing. He can't feel love, or excitement or simple joy anymore. . It is a horrible thing when the loneliest place in the world is sitting next to the man you have been with for the last 15 years. I hate the memories...because even tho he still has most of his memories, he no longer has the feelings that go along with them. He doesn't remember what it felt like to see me walk down the aisle. He doesn't remember what it felt like to hold our nephew for the first time. You never realize how important things are until they are gone.
Another effect from the strokes is the drastic changes in his personality. He once was so kind and sweet. I always felt so safe in his arms. Now, his hugs are cold. Even when he holds my hand on rare occasion, it isn't him. He is an asshole 80% of the time for no reason. He says awful, hurtful things with no concept on how bad they hurt. I have developed a pretty impressive thick skin over the last 5 years, but there are still days that it tears me into little pieces. He is so different. The man I married, my soul mate, died in August 2007 and this new guy took his place. The changes weren't as noticeable in the beginning, but with each new stroke I lost more and more of him until there is little, if anything, left of who he was. I am grieving for my husband and for the epic life that we had but I can't properly grieve and move on because he is still here. That may sound harsh but those of you have been in anything similar with brain injuries, you totally know what I mean. I do pretty well, holding everything together with limited means. but some days, like today, all I can do is cry. I miss him so much.
His bad days are the hardest. He was always the strong one. He was always the one taking care of me and our life. He held me together. Now I watch his every move, waiting for signs of a relapse. It is exhausting. Watching him suffer on the bad days just tears out a little more of me. Anyone who has watched someone slowly fade away will understand what I mean. I feel helpless. I feel weak. I feel jipped. Don't get me wrong, I am grateful every day that I was one of the lucky ones. I met my soul mate at young age, many people never meet theirs. But I wasn't ready to lose him. I wasn't ready to be done. I wasn't ready for this. Before you say anything, I KNOW THAT NO ONE ASKS FOR THIS. However, that doesn't change the fact I am sad and pissed off that I lost my best friend, the other half of me.
I think that is enough for now.
Saturday, April 7, 2012
I have been horrible about updating this blog so here is a quick update. We just moved to a much smaller apartment. It isn't bad and Ron is finally settling in. Nothing really new with his health. His personality changes are pretty drastic from this time last year. His doctor believes these changes are results of the damage done to Pons portion of his brain. So each day is a learning experience.
This blog entry has been swirling around in my head for several days and I finally decided to try to put it all together. I met a new friend last week who is in a very similar situation as I was when Ron first got sick. I remember being where she is right now and I hate it for her. Only people who have been in a situation with a brain injury, be it stroke or accident, can understood the really horrible thoughts that go through your head. I have few people I openly discuss my own feelings with because I am ashamed of the way i feel sometimes. My new friend has given me courage to own up to at least some of the emotions. Write them down and let them go. The reason being, for any 5 people who are shocked or disgusted by what I say, ONE person might read this and not feel alone like I did. So here we go. I will warn now of my use of poor grammar curse words and poor punctuation.
Where to start. Well, I am pissed off...a lot. I try really hard not to throw myself a pity party a lot but I am human and it happens. I get so angry with Ron for being sick..I blame so much on him and then I get disgusted with myself. It is a vicious cycle. It has taken me a long time to get to this point in the acceptance process. He has been sick for almost 5 years and I have just really started to have positive days again. Most of that being because I am finally taking care of myself. I have bipolar disorder and since Ron got sick I have also been diagnosed with a list of things. BiPolar Disorder, Severe Generalized Anxiety Disorder, Post Traumatic Stress Disorder, etc etc. My bipolar has been manageable most of my life for the most part with medication. I've had issues in the past because the bipolar was never properly treated but I was doing decent. I have been very sick for awhile now. Ron getting sick totally flipped my life upside down. The one person I had who loved me for me, was gone. Yes, I know he is still physically here but the man I married no longer exists and I have painfully watched almost every tiny sliver of him leave over the last 5 years. Ron was the center of my universe. People do not realize that I have no clue who I am without him. We have been together since we were 18. Almost 15 years. I don;t know how to be an adult with out him. Ron was my best friend. I was fortunate to meet my soul mate. A lot of people don't get that. Now I live with the body of my soul mate but the mind of someone totally different. Some days I miss him so much I cant breath.
The days I get to missing him like that are the worst. I get so stuck in our past. We had an epic life. It wasn't easy. We struggled through a lot including putting Ron through the fire academy and medic school, infertility treatments and working opposite shifts when he started at the fire department. It was no cake walk but we had an awesome life because we had each other. Ron loved me, unconditionally and taught me how to do the same. He would have done anything to make me happy and always put me first. I do not take what we had for granted. I try to tell people all the time to just take a min and realize what they have, right this moment.
It breaks something in a marriage when one person becomes the caregiver of the other. Ron is totally dependent on me to mange his life. Physically he can do most things for himself thankfully, because I wouldn't be able to care for him. Not only am I a mental case, I have a torn disc in my back. Yeah, it sucks having no insurance. I am grateful for Medicare because otherwise Ron would not be getting the proper medical treatment. I don't look at my husband the same way. Not just because of all of the changes in his personality but because of me having to do so much for him. I realize this has made me a very bitter person and I struggle with that everyday. My husband is almost 33. I shouldn't have to pick up for him, or tell him to brush his teeth , or to shower, or to use the restroom. I shouldn't have to apologize for his horrendous and embarrassing behavior. But I do. I hate having to defend him to others and explain why he does the things that he does. At the same time my heart breaks just a little bit every time I know someone is making judgments against him or misunderstanding him. I have become the overprotective caregiver of a mentally disabled man and I make no apologies for that.
I have anger with our old "friends" that I work daily to let go. This journey with Ron has taught me a lot about people. It makes me sad sometimes when I realize how few friends we have left. No one wants to take the time to understand him and that is such bullshit. What happened to all that Do unto others stuff? How would you feel if someone who claimed to love you couldn't be arsed to learn about your condition? How would you feel if suddenly your circle of friends decreased dramatically? Let me just tell you, it sucks. I know it is a horrible thing to say, but for those reasons I am actually glad that Ron's brain is as broken as it is now. He doesn't cry about losing everyone anymore. His feelings of disappointment are fleeting. I am thankful for that.
I get tired of being told what I "should" do. Why don't I put him in a home? Well, here is why. Ron will only take his meds for me. Argue the point if you like but 2 of his relapses prove this point. SO I have two choices, put him in a home where he dies within a couple months since he will not survive without his medication. Or I keep him with me and learn to handle his personality changes and outbursts. Why don't I get in home care to give myself a break? Well that would be because strangers make Ron very anxious and being around strangers without me is not a good thing. It would take days to get him calmed down. SO my life is on hold, watching him for signs of a new stroke, taking care of him, worrying about if he will wake up. I accept this as my life because of who he was was. Ron is my husband. I made a promise to make sure his life was what HE wanted. So I do my best to do what I can to make that the reality but my acceptance of this duty does not mean that I don't struggle with it and have really bad days.
Conversation is one of the things I miss the most. Ron has something called Conversational Affect, which means he has trouble carrying on a conversation and it is almost impossible for him to start one. I miss talking to him. He also has something called Pseudobulbar Affect which causes uncontrolled laughter which makes it difficult to have any sort of serious conversation. So when I get with people I tend to talk too much and act uber happy because I don't want to lose more friends. Yeah I know it sounds pathetic and I am working on but there is always this little voice in my head that thinks that I am the reason my friends left. Realistically I know that most of the people who are now missing from life made the choice to leave me at my lowest point. Yeah, my brain goes to all sorts of crazy places.
I miss companionship. I miss having someone to hold my hand or give me a hug. Ron can't really do any of those anymore and when he does they are cold...and that hurts more than you can imagine. Ron was my safe zone. With him behind me I could do anything and just holding his hand totally grounded me. I miss being appreciated and feeling loved. It is hard to make people understand that Ron's emotions don't work anymore. Not like the rest of us anyway.
Ok, I think that is enough for now. Thank you for reading if you got this far.