Non-Unique Pain Still Really F*cking Hurts

It's difficult knowing what's right. I know my pain is unique only because it's happening to me. The counselor side of me knows others go through this all over the world. They call it  intellectualizing, but I am so far unaware of better way to analyze a feeling. I let  myself  feel it and explore internally what I think I am supposed to gain from this lesson.  I was singing a cover of the Foreigner song "I Want to Know what Love Is," and I feel like as a young girl I asked this question of the universe and it granted my question by placing me in my current situation as an answer. This is love, that has been revealed to me, it is both everything I thought and nothing like I thought. I remember the good parts so vividly, even though I know the human brain plays tricks on you in hindsight.

I have gratitude that the good times were so good, because I can cherish those memories when my sweet husband, curses me out, demands, & orders me around. We had a talk and he started acting better.  The talk was based around the fact that his verbally abusive behavior only occurred when no one else was around. Two weeks spent with his family and 1 month with my mother revealed this phenomenon. It was shattering  to realize that my husband who  always had kind words for nearly everyone was taking the opportunity to say extremely fucked up shit to me under the guise of him "not being able to help it," due to his illness.
It's been a month since our talk and he hasn't been mean spirited.  I think sometimes he does things to punish me, but they usually backfire because he picks things like drinking an extra beer (or 2), waiting until  230AM to take his meds, and other things that mostly impact only his own quality of life.

I don't fight him on it because it gets worse if I do. He just digs in, rationale doesn't factor into it at all. He just gets loud and incomprehensible as he tries to make his point, but a side effect of HD is irritability and the inability to speak and that is going rapidly. Communication will have to change going forward  and I am nervous about how. There is so much unexpected awful in this disease.

But I also find unexpected moments of joy and utter surprise.  I was incredibly upset over the end of a cherished long term familial relationship. Although on most days he is distant and distracted-he was present and lucid with me that morning and it meant EVERYTHING,  because I thought the part where I can seek comfort from him, was over.

Yet, he held me back and let me cry and said kinds things to me and was emotionally present.  I cherish these things because they will not always be. So I have gratitude for these small moments where love reminds me that it's still here, still golden. In that moment the light hits his eyes and I can have no regrets.

Are you trying to get us Killed? Or I lost it

I yelled at Harry for touching and bringing packages without washing his hands. I was asleep so he did this and then proceeded to touch Who knows what else-until I awoke  2 hours later. He doesn't understand the magnitude of this Covid-19, but he is convinced that he does. I know it's not fair but I'm afraid that he is going to get us sick. I'm already worried that I could get us sick. I have never been more glad that we did not have kids to put at risk.
#caregiverblues

#notproud

#scared
#coronavirus

It's November 23rd 2019 and we are in a diner. H orders a WI omelet and it's almost funny watching  him eat as strings of cheese bow from his mouth to the plate. He looks quizzically, as though trying to decipher how he should proceed--and in that moment and moments like it it's a blast from the past, a flash in a pan. I see my Harry again. Then the moment passes and I  ask if it's ok to cut his food for him. And he thankfully relents and allows me to help him.

I know I am a young caregiver. Mostly because others keep *telling me* "What? But you're so young!"

I think when you marry, you know that you might one day be in a caregiver role of your spouse. My time just came early. The blessings in it is the ability to care for him and myself when I am in sound mind and body. And I have gratitude for that.  I am also glad we didn't have kids.
Children are great and I want mine to feel loved, not like a burden.  I knew I could dedicate myself to the complete care (dressing, cooking, medical appts etc.) of 1 person.
I know my husband well enough to know that he'd prefer it be our kid, so in the long run, care for him would suffer. And I would feel torn in two the whole time. It would be a hell of my own making.
Some people can raise children through the illness of a partner and I have to applaud them because admittedly I am too chickenshit to do so.

I love my husband and wouldn't give him up for anything...MOST days.

On Death and Living 6.7.18

It's strange because we both feel alone. It's like being stranded on the same island at opposite ends. Sharing this experience, but each of us experiencing it very differently. Me, hyperaware of his symptoms, movements, and progression of the illness and he, finding it harder to use the mind he has always solidly leaned on. His ability to figure things out is impaired and I can tell it causes him pain. He has extreme fatigue that keeps him from enjoying his life because he doesn't have enough energy to do the things he likes. I notice some depression symptoms, but I can't imagine anyone not having some. I am going to try increasing our intimacy through small stuff like cuddling and hugs. I realized that we used to touch more and that always provide comfort, even just my hand in his.   Yesterday, I finally felt his loneliness and it's just as cold and isolating as my own. He is my best friend. I hate seeing him in pain. 

I will be home full time soon and we will work on his medical care, home care, clinical trials, physical therapy, and daily routine tasks. They say the more routine built into people with HD's day, the better their mental health and well being.  Harry at baseline appears to be a mellow fellow, so I want to try to make that easier.   I say appears" because I always thought so but now that his symptoms are increasing I see a lot more anxiety, than I did before. Not sure if he is just reacting to the illness or if those feelings are just harder to hide now. He is handling this amazingly though.  I know I wouldn't be nearly as together as he has been through this process. Hell, I've more of a mess than he has, and it's not my body being ravaged by illness.  He voluntarily gave up his motorcycle (after the second accident).  He decided to stop driving on his own, which took guts and I know was really hard. He likes being independent. He finally (2 years after his last job), consented to applying for disability. It took a while for him to see he wasn't taking a handout--he was simply getting back what he had already put into the government by working for the last Twenty Five years. It's getting his retirement early, because he won't live to see 65 (or whatever age they've raised it to by then).

I have more supports in place now in 2018.  I have a therapist, anti-depressants (but only take them if you are going to add the other stuff otherwise they aren't as effective),  a solid support system of family and friends, actual tools (yoga, meditation, mindfulness, breathing) to use to manage my own mental health and it's not magic, but it makes it a little better--just enough to make it bearable.. 

On Death and Living. 6.6.18

It's rather ironic that I complained in my last posts about Huntington's blogs that abruptly stop posting----and then fall off the earth myself only to come back SIX years later.
Hey, I've been busy finishing up my education goals and figuring out the living situation. Right now, we are trying to build a bathroom on the first floor of the house. I am about to quit my job as a Social Worker to get Harry's home care in order, figure out his medical wills and all that. I honestly needed the time off to get Harry's diet and therapy regime together and to "recover" from being a social worker. It really is a rewarding job, it just seems like there are dedicated efforts to make it less rewarding from many sides. Sometimes I feel like I am being punished for my care and compassion for others. I like my clients and my co-workers, but I need to focus on home and there is so much to focus on at work. Also, it is a dangerous environment we work in, mixed with addiction and untreated mental illness. People have been killed in the last 3 months and honestly that is the last straw for me. I can handle the reality of bedbugs, body waste hoarding, consistent verbal abuse, potentially dangerous locations, potentially dangerous situations, none of these things are great, but once you start adding in *actual* death, I'm out.


I cannot justify something happening to me, who would care for Harry? He has a great family, but he is my family, my responsibility, and not in a burdenous way, in a "I don't want anyone else to do it," I want to. It hurts like a motherfucker, but I keep holding onto him. I'm afraid to let him go, but keeping him closer rips my heart out.

The Good Times and sex

It’s easy when things are good to “forget” about Huntingtons.  It probably helps that I’d like to avoid thinking about this as much as possible.  It also helps that the symptoms vary in intensity day to day.  So some days it’s inescapable that Harry is getting worse and others he seems perfectly normal.   

If I could remain in the denial space forever—I totally would, but unfortunately/(fortunately?) I can’t authentically exist in denial.  Once your eyes are opened to the reality of your situation, you can’t stick your head in the sand because even in the stand all the thoughts you hope to avoid are crashing around your skull—and pretty much continue until you are forced to act.

I get why people try so many methods in life to escape their troubles.  I wish that there were pills I could take to abate the sadness, but life just doesn’t work that way.

I’ve felt distance between my husband and me this month.  We had a great anniversary trip in May and made love almost everyday (well once we left NYC—we were too exhausted to do much but pass out when we went to bed.) I’d say we have sex at least once a week.  But we haven’t in almost a month.  I’m not sure if he just has a lot on his mind.  Usually I am the one who initiates and I’ll I’ve wanted to do since the HD conference is get further away emotionally because it hurts so much.  I don’t love my husband less or am any less attracted to him but I want to protect myself, my heart, and spirit, even though its too late.

I know it’s too late.  And is it really fair to either us to hold back the depth of emotion that we have for each other, when our time is limited?  There’s a part of me that wants to love Harry with wild abandon and endless love, not only because I truly feel that way about him but because our time together is limited.  Yet, there’s the other part that wants to protect myself, because as his health declines I will need to be on top of EVERYTHING—my own life goals (my degree, my dreams, and interests) and his care and costs for everything, while handling household bills, cleaning, maintenance, and repair—and the emotional fallout from his continuous decline for the both of us.

I’m afraid that if I pour all my love into him and he dies that I won’t have much left for anyone especially myself.  When he’s gone, will I survive that?  I don’t necessarily mean suicide but more, will I be able to recover emotionally? Will I be able to be myself? 

Or will I just be this husk of a person?

Taking inspiration where I can find it

Today is better.  I'm glad my mother is here.  We had some seriously awful fights when I was growing up, but we've managed to become friends in my adulthood and I'm so grateful for that.  We will always have our disagreements--because we're too similar in some ways and too different in others, but we both try to listen--that's the difference.

Anyhoo, I was reading some other caregiver blogs/article and I found one that struck a chord.  She writes about caring for her husband and managing the storm of emotions that entails:

"But sometimes, a fog of black resentment fills my room and I cannot breathe. It usually comes when I least expect it. It comes when a neighbor, whose most serious and risky challenge in life is which dress to wear to which party, calls to ask that I keep her pool plants over the winter in my greenhouse. I listen to her nonsensical blabbering about the cost to keep the pool pretty and I tell myself that I will not shout out my resentment at her request. I will not tell her about the challenges of a caregiver or that there is no time in my schedule of responsibilities to water her plants. Can’t she see that? I will not tell her that I must tell Tony that it is no longer safe for him to negotiate the stairs to his television room. I will not explain to her that it must be done in a way which will not strip away his independence and self worth. I will not tell her of the little battles that I fight nor of the multi-faceted totality of my being, the anger, the pride, the frustration, the admiration, that is who I am today.

And I ask myself would I trade places with the shallow woman who becomes horrified at an uneven summer tan. I think not. And I let it go."

And also this part:

"Helen Keller, who had great reason for self pity said, “Self pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” She was not content to be frozen in a soundless world of darkness and self pity. Neither am I. Like Keller, there will be days when I want to sit down and quit, days when the road is too rocky, days when the enormity of the task is too much for me, days when I would be content to add my self pity to the pity of others observing my plight. I will tell myself that I must drag myself to my feet and go on as best I can without self pity.

Self pity cannot exist without self doubt. Our negative emotions are not harmful to others, only to ourselves. We must let go. I will remember Nelson Mandela who described how he forgave, without self pity, those who had imprisoned him for 27 years, “I had to let it go. They took the best years of my life…they destroyed my marriage. They abused me physically and mentally. They could take everything except my heart and mind. Those things I would have to give away and I decided not to give them away.”

It's a good read and it really resonated with me --in some of the fears I have and the anger about the selfishness of other people.  Sometimes I just want to scream "My husband is dying and you come to me with this petty bullshit!"

But I can't blame them because they don't know.  So many of the people at my job (at least in upper level management are so cutthroat.  I'm like "You work for a bus company, not the UN! Get OVER yourself, you paper pushing arrogant bastards."  That's obviously my internal monologue otherwise I would have been fired years ago.   I don't feel particularly compelled to tell anyone.  There are a few people there I trust who know, but I've never put my personal business out there for all to see---I'm not going to start doing that now.

My family and friends that I consider family already know and have been so supportive.  I feel so lucky to have them.  I really do.  I was speaking with my stepmom today and she said something that made me stop and think.  So far I have been handling this far worse than my husband--who is actually afflicted with the disease, probably because he's had more time to process and accept it (most of his adult life-he's 39).  But my step mom pointed out how close and supportive Harry's family is and will continue to be, she said you should be thankful that he was raised in and surrounded by love.  

And that's so true, when I think of the sheer number of people out there who don't have anyone or they may have a ton of money but no one who truly cares for them---it makes me feel better that my husband has people to rally around him.  He has a ton of friends and family who love him.  At least he's led a good life up to this point.

I try to be grateful for the small positive things, because the big negative one is so omnipresent in our lives that it's easy to lose sight of the good.  And there is good here.  He's in the early stages and still able to get around.  The cognitive stuff is rearing its ugly head, but he's still himself.  And By God I'm grateful for just a little more time before it all goes to crap.