Tag / caregiving

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

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.

 

by krubesch

Acknowledgement

“Accept, Acknowledge and Awake.”
-Aditya Ajmera

I haven’t posted a new blog post in about six months.  I’ve written several that I have not published- either I felt like they were not good enough or whatever I had to say was not important.  I think it’s fair to say that I’ve been in a funk for awhile and maybe I just wanted to wallow in it by myself for awhile.   I’ve decided to acknowledge that I really haven’t been taking care of myself lately and maybe this means that I’m ready to do something about it.  I know that if I don’t change some habits soon I’m headed for health complications and more self loathing.

I’ve completely fallen off the healthy food eating bandwagon.  Eating healthy is a huge way to take care of myself and it involves a lot of effort.  In March of 2015 I figured out that my body does not tolerate gluten, dairy, onions, or acidic foods very well.   As you can imagine- a diet free of these foods is a giant expensive pain in the ass.  I’ve always had a complicated relationship with food.  I love the way it tastes, hate what it does to my body. I’ve always joked that just looking a certain foods adds 10lbs to my frame.  Food has been a comfort, a way to celebrate, a way to make me feel better about life’s circumstances.  It’s been easy to justify eating crap because I’ve not been a regular alcohol drinker for a year and a half.  I’ve eliminated a lot of my vices or unhealthy coping skills, so if I want to buy pumpkin cupcakes I’ve let myself.  The pumpkin cupcakes then lead to whatever bread I want to eat, adding chips to my lunch, eating cake and ice cream, to driving through McDonalds.  People say that everything in moderation is fine, but for me moderation leads to indulgence over and over. I seem to do better with all or nothing.  The food makes me feel comforted- for me Mcdonalds was a speacial treat when I was a kid and I think it brings me back to that care free kid feeling.

I’ve had a cold for two weeks, which is rare for me.  I’ve injured my knee, which I know I can’t blame on my food intake, but I can’t help but wonder if my food choices lead to inflamation which made it easier for the knee injury to happen.  I’m watching my hard work disolve as my clothes are becoming tighter and my reflection in the mirror larger.  I also wonder if my dietary changes are an indication of bigger issues beneath the surface. I don’t like myself very much sometimes and I wonder if this just gives me more material to get mad at myself or if I’ve simply just been unable to be kind to myself.  Maybe food is something to obssess about so I don’t have to deal with harder things.

Taking care of Patrick has gotten harder and weighs a lot more on my emotions.  I think that’s part of the reason I’ve been just eating what I want in the moment.  It’s hard to sit with someone who is wasting away before your eyes.  To have to check to see if he’s still breathing. So much has changed in a year and it’s hard to remeber now that it was only six months ago that he was still able to be by himself and was walking and eating mostly unassisted.  Yesterday he was almost comatose. I often feel like I am just talking out loud to myself.   No interaction at all, he was either sleeping or just staring off into space.  Feeding him was not going to happen because he woudn’t open his mouth.  I can’t help but wonder if he has any quality of life left.  If he’s even aware of his quality of life.  My heart starts to break just by writing about him.

I can tell a correlation between the foods I eat and my depression.  Shitty food makes me feel good in the moment, but then I feel shame, guilt, and just gross afterwards.  I’m already fighting against genetics- the short, broad shoulder and stout kind.

I’ve got to find the drive, gumption? whatever to get back in line and make the effort to eat better foods.  I’m just not sure where to find it.  I’ve started a new medication- after two years of being back on medication I have not found the right cocktail yet.  Out with Prozac and Buspar and onto Brintallix.  I’ve started to wonder if there is a medication that’s benefits will out weigh the side effects.  Maybe Brintallix is the key.  I’ve been on it for two days and I have noticed a pep in my step.  Hopefully that’s not my imagination and this medication ends up being helpfull.

by krubesch

Walls Falling Down

The best way to find yourself, is to lose yourself in the service of others.

-Ghandi

For those of you who don’t know, there seems to be an unwritten rule in healthcare (maybe it’s written somewhere) to keep patients at a distance.  You are supposed to follow OSHA guidelines, assist the patient to the best of your ability, to have empathy, but not let that empathy have a profound effect on your personal/ mental health.  Basically to not let emotions and feelings play into the relationship you have with your patient.  I’ve worked in the health care industry for the past seven years and I’ve been really good at this unwritten code.  That is until now.  I am currently a caregiver for a man who has Lewy Body Dementia and he’s completely undone the armour I thought I had in place at the beginning of this job.

I knew I would be great at this job because I have (at this point HAD is a better word) a great poker face and the ability to push my feelings, thoughts, and emotions away.  I’ve been told that people often think I don’t like them because of my cool, collected demeanor.  I just don’t show a lot of emotion one way or another.  When I began caregiving for Patrick in September I thought that I could handle watching him decline into the shadow of LBD.  I didn’t know him before he was in the midst of his battle so I didn’t have the memories of “old Patrick” to tug on my heart-strings.  What I didn’t count on was how I would develop a friendship with Patrick and I would/do feel my heart-break little by little as this disease takes him further away from himself and his loved ones.

I spend more time with Patrick in a week than I do with my wife, so it’s funny that it’s surprising to me of how well I feel like I know him.  I can anticipate his needs and can tell how our day is going to go simply by how our morning starts.  I know that we will be able to communicate and joke around more according to how long he stays in bed.  If I get to the house and he’s pulled out all his shirts, socks, and underwear I know we are both in for one hell of a day.  If he naps throughout the day, I know he’s going to be less restless and comprehend more of what is happening around him.

For instance, today has been a challenge.  Patrick tried to get up and dressed several times throughout the night and I can definitely tell he did not have a restful night.  There are no jokes, words I can’t understand and body movements have been difficult for him.  A big indicator that we were in for a challenging day was that I had to bend his knees for him to sit down and pants were extremely difficult to get onto his body.  He usually spends these kind of days watching hours of cowboys on the tv and is not interested in leaving the house or doing other things around the house.  He’s taught me that I need to go with the flow instead of having our days together planned.  He’s teaching me to be less rigid and more in the moment.  Days like today make my heart ache for him. I know that if I had these kinds of days I would be in the throes of a deep depression.  This ease and openness I have with him is only going to make me hurt more when he’s gone, but it would also make me feel less alive while he’s still in my life.

I think the face of healthcare could change if providers, managers, and staff weren’t as concerned about volume as they were quality.  Every practice I’ve worked with has had their goal be to maximize the amount of patients that they see.  I wonder what our health as a society would look at if we were more concerned about maximizing the quality of our care and establishing an actual relationship with our patients. I know that I am able to take better care of Patrick through establishing a relationship with him instead of treating him like a stranger or looking at this situation simply as a source of income.

For more info about Lewy Body Dementia www.lbda.org