Tag / death

by krubesch

Black Eyed Susan

“It’s because people are so perishable. That’s the thing. Because for everyone you meet there is a last moment when your hand slips from theirs, and everything ripples outwards from that, the last firmness of a hand in yours that every moment after becomes a little less firm until you look down at your own hand and try to imagine just what it felt like before their hand slipped away. And you cannot. You cannot feel them.”
History of the Rain, Niall Williams
Susan Posted this quote in her blog titled, “Ah Well”
https://susanmdougherty.me/page/4/

I know that Susan would write this blog post much more eloquently than I am able to and I keep waiting for an alert to let me know that Susan has written about her death on her blog, but she can’t because she is gone. I know what it is like to lose a parent at a young age and it feels like death has surrounded me for a lot of my life, as I have lost many people I have cared about. The difference between Susan’s death and others is that she suddenly passed away while in Spain on vacation (while I was housesitting for her and taking care of her new dog). Most people in my life have died long and slow deaths from dementia and heart disease. I know how to deal with death when it happens slowly over time, but sudden death feels so very different.
There was not any time to prepare or to tell myself that this could be the last time I would see her. I find that I get a lot of closure from telling myself things like, “this is the last time we are going to have a sleepover” or “this could be the last hug I give her.”

It’s still hard to fathom that our evening marathons of Pitbulls and Parolees will never happen again and that I won’t really be going back to the house that felt like my 2nd home. I know that these things sound silly, but so many of these thoughts keep going through my mind. I found myself thinking that I was so happy we finished watching the entire series of Longmire not too long ago. This was a show we started watching with her husband, Patrick, (I was his caregiver for the last 1.5 years of his life) who had Lewy Body Dementia. In a way watching Longmire made us feel close to Patrick and remember the days we all spent together.

My heart feels so achy and burny everyday and I miss her terribly. There are so many moments throughout each day where I go to text her and then remember that I can’t. I had no idea how often we communicated until now. Not only was she my wife’s boss, my former boss, a former classmate, but also one of my closest and dearest friends. I had no idea when I started caregiving for Patrick, that we would become so close. It all still feels like a very bad nightmare.

Susan was the kind of person who put thought into everything she did. She would surprise me with gifts that I had saved on my Pinterest boards for Christmas or my birthday. Her cards were meaningful and beautifully written and she made me feel special. There are not many people that I allow through my walls into my heart and I realize now that is because I have been hurt very deeply in the past and it hurts so much when I do- and something like this happens. This is when I hear Susan’s voice in my head telling me, “it is better to have loved and been hurt than never to have loved at all.” And I know she is right, I just feel like I can’t stand how much it hurts right now. I have been hearing her voice lately (no one needs to worry!) in similar situations. It’s pretty comforting that I knew her well enough to know what she would be saying to me now.

Memories of her consume me in the strangest places. The other day I was in the grocery store and it was like everywhere I turned she was there. I knew her in such an intimate way from working in her home that I am quite familiar with what she ate and how some of these items changed with the seasons. I am reminded of her with the Boar’s Head honey turkey in the deli, the peanut butter and chocolate Cheerios in the cereal aisle, the tiny potato rolls that she used for sandwiches, the pumpkin english muffins that she would eat for breakfast with cinnamon butter in the fall, and Nutella that she would ALWAYS have in the pantry that she liked to spread over Nabisco nilla wafers when she wanted a sweet treat. I also am reminded of Patrick with the chili Fritos, egg malt balls at Easter, and the pudding we fed him at the end of his life.

I am also reminded of Susan on a daily basis, by our new dog, Casey Joy (named by Susan)- who was supposed to be Susan’s new dog when she got home from Spain. I had picked her up from Lifeline after she got spayed and was staying with her at Susan’s house until she was supposed to return home. Leah and I keep joking about how of course Susan would die and leave us with another dog. When Casey acts up, we look at the ceiling and tell Susan to make her dog behave! Having Casey is a nice reminder, especially when she is cuddly and gives me hugs. I know that Susan is watching, loving that Penny and Casey are starting to settle into each other and laughing when we yell at her to control her dog.

I find myself looking at pictures of us over and over and re-reading all the emails she ever sent me. I have screenshot so many Facebook posts and texts that she has sent me over the years because I don’t want to forget her kind words and feel this need to fill this heartbreak somehow. I have been wearing the jewelry she gave me everyday and I freaked out today when I realized my necklace had fallen off until I found it in my car. It’s like I am scrambling to find anything that will make the ache go away and make me feel closer to her.

Something that no one knew, including my wife Leah, was that Susan was the person listed on my safety plan with my therapist. What is a safety plan? It’s an agreement I have with my therapist in writing about what I should do is I start to have suicidal thoughts and want to hurt myself. Thankfully, I only had to call or talk to Susan about 4-5 times over the course of about 2.5 years. She was amazing and so helpful when I would get in this head space. She treated me with love instead of fear and seemed to know when I was struggling even before I said anything. She often told me that she would be so mad at me if I ever hurt myself and I took that to heart. It’s really painful to know that I no longer have her as my person and changing that paperwork breaks my heart. I will be forever grateful to her for showing me unconditional love and being there for me in ways that a lot of people are not able to.

I am afraid that over time I will start to forget her voice or what it was like to be around her. She was also the only person who really understood what it was like caring for Patrick and she often told me that I was the only person who truly knew the ins and outs of his disease because we were both in the thick of caring for him on such intimate levels. It hurts that out of what felt like a trio of friends, I am the only one left.
I know that Susan would not want her death to derail the progress I have made with my depression and I keep trying to remember that as I feel like I am swimming upstream through a fog. I am extremely grateful and thankful that I have had the opportunity for the Dougherty’s, Patrick, and Susan to be a part of my life even though I would have liked to be able to have spent more time with them both. A lot more time.

It’s not the weight you carry
but how you carry it-
books, bricks, grief –
it’s all in the way you embrace it, balance it, carry it,
when you cannot, and would not,
put it down.
Mary Oliver

by krubesch

Real Talk

“Write hard and clear about what hurts.”
Ernest Hemingway

Due to the recent celebrity suicides, I have been thinking a lot about what my depression looks like on the outside and how people I am close to would know when I am struggling to keep my footing in this world. I know I have written about my depression and suicidal thoughts before (as this blog is mostly written about these subjects), but each time I put my most vulnerable thoughts on paper and create a permanent record letting everyone know my struggles- it feels like coming out all over again. Let’s be honest, it’s pretty taboo to admit that your brain is fucked up and that is one of the reasons why it’s important to talk about it. A few years ago I had to take a FMLA leave from a job that was very stressful and I was struggling with increased PTSD symptoms along with high blood pressure. I remember being completely distraught when my FMLA paperwork was sent to the wrong fax and a coworker looked through my paperwork and started rumors that I was having a nervous breakdown. I was so ashamed that I had to take a break from work and that my PTSD was a part of the reason why I had to. It felt taboo to show any weakness, especially since I was in management and I was terrified of what people thought of me.

People resort to suicide, or at least I struggle with suicidal thoughts when I am overwhelmed with my feelings and emotions along with the shame and stigma of having these thoughts in the first place. The silence of keeping these thoughts to myself is often deafening and although all of this is embarrassing to admit, we need to talk about it or we will keep losing people we care about. I cannot speak for Anthony Bourdain or Kate Spade, but I can speak for myself.

Today was one of the hardest days I have had in awhile. I had a particularly difficult and draining therapy session last night and being in constant physical pain is starting to wear on me. I feel like I have been hit by a bus, which is how I usually feel the day after I’ve done a lot of work in therapy. I pressed the snooze button for over an hour and fell asleep in the shower. I contemplated staying home from work, but knew that might make things worse. On my drive into work I thought about what my outward signs of depression look like and I came up with this list:

  • I completely stop wearing makeup because I usually end up crying on the days I actually wear mascara and I look like a racoon (it’s harder to hide that I’ve been crying). I also sleep too late in order to have time to put it on.
  • I stop exercising and want to spend most of my time watching tv or laying in bed.
  • I push people away and cancel plans- even though I desperately want to connect.
  • I become forgetful and have a hard time paying attention.
  • My posture is different- it feels like I am moving through my day with a heavy, wet blanket on my shoulders. Every daily task feels difficult.
  • I am way more quiet than normal (crazy, I know!).
  • I have sleepless nights or I sleep for over 10 hours at a time.
  • I avoid eye contact and shut down
  • I use humor in order to avoid serious conversations or in a self deprecating way before anyone else can criticize me

Words I have heard to describe people who have committed or attempted suicide are lazy and selfish. I personally know that this is not true. Suicide may look selfish to the people who are left behind or those who don’t struggle with this particular demon, but as someone who has contemplated suicide, I have convinced myself that it is the least selfish thing I could do. Depression tells me that I am a burden and that people are tired of dealing with me. It convinces me that everyone would be better off without me and that I would really be doing the world a favor. As someone who has worked really hard and spent thousands and thousands of dollars in order to try to combat (or at least alleviate it, since it appears to not be going anywhere) my depression, I would argue that I am the opposite of lazy, even though American society and I tell myself that I am. Sometimes that is the worst part, working so hard to feel better and it never (my wise mind knows that it is occasionally and not always) feeling like it is enough or that I am trying hard enough. Sometimes I get really mad and feel like it is selfish of people to make me promise that I won’t hurt myself, when I know that they just care. I feel like they don’t understand, but I know deep down that this is not necessarily true. I get mad at them because if they cared so much, then why don’t they do more to make me feel better? Don’t they know that if I am contemplating suicide, it feels unbearable to be inside my body and in my mind? But I know, that it’s really not up to them to make me feel better, it’s all on me.

What do you do when a friend is struggling? It helps me when people check in with me, even though I might have stopped reaching out to them. Talking to or just sitting with someone who I know will just hold space for me helps. I clam up if people tell me how I have it better than others (of course I know that, it does not negate that I still feel this way) or if they freak out about hearing that I have had suicidal thoughts. Please do not tell me to do self-affirmations. Please do not tell me that this too shall pass, because in the moment it feels like it won’t. Something as simple as a text can help me when I am in a funk. Asking me to reach out when I am struggling is complicated. That is the last thing I want to do when I am down in it. I recognize that it is my responsibility to get help when I need it, but I tend to only reach out for help when things are pretty bad.

I can say that the severity of my suicidal thoughts has diminished over the past year and that it does appear my hard work and money spent is helping in that regard. I am too practical to hope that one day I won’t have these thoughts or urges, as they have been a part of my life for a very long time. If you also struggle with suicidal ideation, I can say that is gets better (or maybe more manageable) even as cliché as that sounds.

 

For crisis text line- Text CONNECT to 741741 in the United States.

 National Suicide Prevention Lifeline: tel:1-800-273-8255

 

by krubesch

Enough

“We all have burdens we carry through life, grief and disappointments that we can’t change. But we can make them lighter if we don’t hide them, if we don’t try to bear them silently and alone.”

Joanna Connors

 I will Find You (P.235)

It’s been quite crazy and busy the past several weeks for a lot of different reasons.   I have had to juggle a lot of doctors appointments along with work and situations that inevitably arise in life.  My stepfather died on May 2nd after a year and a half battle with pancreatic cancer.   On May 1st I unexpectedly flew to Seattle to see him and be there for my mother when he took his last few breaths.  I am so grateful that the timing worked out so that I had a chance to visit and hug him the day before he died. Similarly to my father’s death, I had feelings come up that I had not anticipated.

In early April, when it was apparent he did not have much time left, I decided to write him a letter.  In this letter I wrote the things I wanted to say to him, but knew I would never be able to adequately say them out loud – as writing is my best form of communication.  When I sat down to write the letter- as usual, feelings and thoughts I did not know I was having poured out onto the computer. It often feels like my fingers keep all my feelings, thoughts, and secrets.  I will not bore you with all the details, but I wanted him to know how thankful I was that he came into my mother’s life and how he wormed his way into my closed off heart.  After my father died I felt like I was done with father figures (I had paid my penance and wanted to be free) and really wanted nothing to do with another one.  When my mother started dating Arnie and married him I would refer to him as “my mother’s husband” instead of my stepfather.  She married him long after I was out of the house and he was not my father in the usual sense.

Fortunately for me, Arnie was more than just my mother’s husband.  In a way he became one of my most important advocates.  He not only saved/repaired my relationship with my grandmother, but also opened doors in my relationship with my mother.  Arnie lived what he preached (an example of a true Christian) and this was evident in the way he helped me to navigate my relationships with my mother and grandmother as a queer person.  I was outed to my 98 year old grandmother by another family member and I was completely devastated.  I had planned to not share that part of my life with my grandmother because she was very religious and conservative and I just felt like it was not necessary to.  I had remembered how disappointed my grandmother was when she found out Rosie O’Donnell (big surprise!) was gay.  Anyways, Arnie and mom happened to be with her in Daytona when she was told that I was gay and he was able to sit down and speak with my grandmother and my relationship with her remained mostly intact until the day she died.

Arnie also made my mother happy in a way I had never seen before.  Her smile was real and bright and she had a little dance to her step. I am very grateful to him for this because she definitely deserved to have this kind of companion in her life.  He also had a way of saying what one needed to hear. During our last phone conversation he kept telling me that I was enough and that I needed to remember that.

I got back from Seattle on May 8th and then on May 9th I started my first session (of 30) of TMS (transcranial magnetic stimulation) and got an IUD in order to alleviate my possible endometriosis symptoms.  My TMS treatment is 5 days a week for an hour for 6 weeks. The picture featured above is a picture of me receiving the TMS treatment.  The black piece of equipment on my head is the magnetic device.  For four seconds it feels like a wood pecker (not painful, just a little uncomfortable) is vibrating on my head. Then there is 20 seconds of silence and it repeats for about 45 minutes.  During TMS I have been using the Headspace app to meditate for 10 minutes and then I listen to music or read a book for the remaining time. On Friday I finished my 9th session and I think it is having a positive effect on my overall mood.  It’s still a little to early to tell.

Prior to leaving for Seattle I had an EKG and found out that I have a prolonged QT interval, which is most likely caused by my combination of medications. Because a prolonged QT interval can be dangerous and I have a strong history of heart disease in my family, it was necessary to make some pretty immediate medication changes.  So along with the TMS and IUD I have been tapering off Lexapro and Trazadone onto Vyybrid and something else to help me sleep at night (have yet to find).  Needless to say it’s hard to determine what is responsible for changes in my mood with all of these factors happening at the same time.  I have been keeping a daily log about my TMS treatment and will be posting more about my experience with TMS once I have completed the treatment.

by krubesch

Re-entry Part Two

screen-shot-2017-01-22-at-12-28-15-pm

I’ve started feeling melancholy on Thursday, the first time since I’ve been home.  I have to stop myself from thinking that the “honeymoon” is over and re-frame it as this is a feeling that will come and go.  The only thing is that in my experience it’s the good feelings that fluctuate and the hard ones stick around a lot longer.  I knew that while I was in the hospital I was in a safe bubble, but I think that I expected that once I got home things would be easier than they feel at the moment.  They are a little bit easier (things, life in general), but I’m still really anxious, jumpy, and some of those feelings I don’t like are returning.

 

Today is the one year anniversary of Patrick’s death and the weather is gloomy outside and I feel gloomy inside myself.  As usual with death, my heart does not hurt quite as much as it did when he died, but I do miss him so much.  I think he was one of the safest people I have met: I could trust him without great repercussions.  If he hurt my feelings I could blame it on the Lewy Body Dementia instead of myself, I could tell that he was kind right from the beginning, and I knew that he would not reject me in the way I fear that others might.  Because of this I think I trusted him in a way I have never trusted anyone else.  We were content to spend time together in silence and it did not feel awkward, at least not for me.  I did not anxiously feel like I had to say something, anything to fill the silence, which I often feel in the company of others.  

 

Sometimes I found myself speaking with him in ways I was not able to speak to my therapist- we had this ease with each other.  I always looked forward to going to work and often had things I wanted to tell him or food I wanted him to try.  He always asked about the score of my soccer games from the night before and seemed proud when we won.  I know that Leah and Susan sometimes worry that taking care of him and seeing it through until his death made my depression worse, but I feel like my relationship with him helped facilitate more meaningful relationships with others.  As I was in a really bad place before I started working with Susan and being around them was the right medicine at that time.

 

Reintegrating back into my life at home has been a little hard and exhausting.  I forgot how much the daily things like making dinner, packing a lunch, making sure bills are paid, and taking care of our animals and basic things around the house seem to wear me down.  My mind is also less clear from the medications I’m on, so it feels more draining to think logistically and make sure I’m not forgetting anything.  Leah and I are working together on this by trying to build rest time into our daily or weekly schedule.  I’m finding that I really need that time.  Although sometimes slowing down makes me more aware of my feelings, which is arduous as well.

 

I’m pretty much giving up on the idea of going back to school for the near to distant future. I just don’t think it’s the best or smartest decision, which makes me want to criticize myself.  I know that by 2020 all the courses that I have taken in undergrad will no longer be valid as prerequisites because of the 15 year rule. That makes me want to just give up altogether.  Maybe i just have to realize that not everyone is cut out for higher ed and accept that.  I don’t know how women with families and jobs go back to school with all of that going on. They definitely have my respect.

 

My therapist told me on Friday that I need to stop worrying and trying to predict the future. That thinking is causing me a lot of strife right now.  It’s really hard to stop doing that when you’ve been doing it your entire life.  I am working on staying in the here and now even if that’s painful or difficult because I know that my old ways of coping saved my life at one point, but are not longer working or useful.  I am also hoping that writing this down makes me want to do it more than I really do!  

by krubesch

I Miss Your Face

 

Rivers And Roads
The Head and The Heart

A year from now we’ll all be gone
All our friends will move away
And they’re goin’ to better places
But our friends will be gone away

Nothin’ is as it has been
And I miss your face like hell
And I guess it’s just as well
But I miss your face like hell

Been talkin’ ’bout the way things change
And my family lives in a different state
If you don’t know what to make of this
Then we will not relate
So if you don’t know what to make of this
Then we will not relate

Rivers and roads
Rivers and roads
Rivers ’til I reach you

The 22nd marks a year since my grandmother passed and a month since Patrick’s death. Two people who meant a lot to me.  I tried to write about Patrick several times before his death (I have three unpublished drafts), but I was unable to let myself go there.  Thinking about the situation too much made it difficult for me to do what was needed and to not be a blubbering mess around him.  Now I’m just a blubbering mess without him.

I spent so much time with him and thinking about him on an everyday basis that I feel lost now, without a purpose. I have this nagging feeling that something is missing. It feels like I don’t know what I’m supposed to be doing at any given time.   I find myself feeling like I should be getting Patrick’s pills ready to go into his pudding at 2:30pm everyday, but then I remember.  I don’t need to look at the camera on my phone when I’m not with him.  When I’m cooking at home I wonder if Patrick would eat what I am cooking and then I remember.  I find myself crying at the weirdest times, usually when I’m driving in the car.  I know it’s better this way, I know he is no longer suffering and Susan can start to regain her freedom to come and go as she pleases.  She no longer has to worry about getting up early in the morning to get him taken care of.  She does not have to watch her husband slip away from her anymore. He is at peace.

I miss him anyways. I start to wonder what I miss because he has not been the man I met for awhile now. I miss the simple things like watching tv with him, or cutting his hair, even wiping his mouth.  It’s weird to go from hoping that Patrick will be at peace (essentially die) to wanting him back.  Wanting life to remain the same, I hate change.  I lost a very good friend and my job in same day. This sadness, or grief feels so selfish, which then makes me critical of myself and my feelings.  He was not my father or my husband.  When I let myself feel my emotions, I worry about the backlash of depression.  Sadness and depression feel so similar that I’m afraid I can’t feel one without the other consuming me.

I feel like our jobs define who we are (at least in the USA).  What is the first question you ask someone when you meet them? What do you do? It’s not how we make a living, it’s who we are.  My past several jobs have defined who I am or at least were the center of my life. For a year and a half I spent more time with Patrick than my wife. I knew the subtleties of his expressions, if our day was going to be difficult from the shakiness of his hands, I knew if he was with me by looking in his eyes. I learned to anticipate his and Susan’s needs (at least those that I could meet).  I knew I ran the risk of being heart broken by connecting with Patrick instead of treating this like just a job.   I understand now why hospice aid’s and nurses seem a bit detached, they have to be or they’d have their hearts broken over and over.  I did not know how hard his death would hit me.  Logically I knew what the deal was: I was going to help Susan care for Patrick until his death.  I wholeheartedly agreed to having my heart broken.

Now I have to figure out where I go from here and how to get there.  When people ask me what I want to do now the answer is still the same: take care of Patrick.  Maybe at this point I have to be ok with not knowing and not wanting.  I am grateful for the relationships I have made because of Patrick (Susan and ALL the Doc’s), that and Leah are what keeps propelling me forward and out of bed in the morning. I have to believe that I will find my purpose again otherwise the darkness wins.