Category / Lewy Body Dementia

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

Re-entry Part Two

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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.