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Posts Tagged ‘dying’

Just over two years ago I wrote an entry entitled ‘You Don’t Know’ about the idea that you don’t know what it like to walk through someone elses illness.  I’d like to revisit this idea from an emotional stand point instead of a physical one and from the point of someone who is losing someone they love dearly.

“I would give anything for one more visit with my mom”

“Embrace the time you have”

“Spend all the time you can so you have no regrets”

‘You’re so lucky, I would give anything to have known it was coming, to have had more time”

This is what I hear and more when I ‘complain’ about watching my father fade away as he suffers and dies slowly.  When I struggle to figure out how to deal with the emotions of losing one of the most important people in my life.  I nod my head and I say thanks but I wanna scream “YOU DON’T KNOW!”.  Early in this process when my dad was still whole the platitudes of embracing him, making memories, and regret for lost loves I understood at this point they hurt.

Here is what a visit with my father looks like:

I visited yesterday, I walked in to his room in the nursing home, not much different than a hospital room, and he was sitting up in his bed.  His breakfast untouched in front of him, his hands shaking uncontrollably, glasses off, eyes barely open.  I said ‘Hi Papa’ and he looked at me and was happy to see me, he knew who I was (Thank God!).  He said ‘Hi’ and then muttered incoherently for a bit.  I could see that he was struggling to see what was on his tray so I asked where his glasses where, he continued to mutter, I found them and asked if he wanted them.  He said yes and I helped him put them on as this simple task that he’s done most of his life is a challenge for him now.  I took the lid off it, his fruit, and hot cereal telling him what each was and asking what he wanted. He muttered at me for a bit more and I figured out he was asking about the juice on his tray.   At this point my mom came in and I asked her to find him a straw as I held the cup to his lips because he couldn’t, his hands were shaking too much and too hard.  When I pulled the cup away he said “That’s good!!!”.  Mom came in with the straw and with help he finished the juice.  He proceeded to mumble and mutter at my Mom about her looking ‘different’ and ‘less dark’, we have no idea.  He then spoke a bunch of garble gook that had the word “back” in it.  Based on his movements I could tell his back hurt and between gestures and deductive reasoning we figured he wanted the bed down.  Throughout the half hour I was there he faded in and out of consciousness many times.  I had to leave the room once as I refuse to cry in front of him.  Very little of what he says make sense, and he doesn’t in general understand what he’s being told.   When I left I kissed him on the head and told him I loved him he said he loved me to.  The only positives, truly, of this visit are that he knew who I was and understandable said I love you.

This may not seem that bad or whatever but I left this visit and for the first time in this process completely fell apart.  I’ve strived to control and push down the feelings of this process and seeing my Papa like that made it impossible.

When people tell me what they would give for one more visit with their lost love one in response to my sorrow at my father’s decline I want to ask if they would still feel this way if this was what a visit looked like. If after a visit you sob for the person you love.  The reality is I would give anything for one more conversation with my dad, my Dad – My Papa, not what’s left.

Just because you’ve lost someone and miss them doesn’t mean you know what someone who is going through that experience is feeling.  Your relationships, your way of dealing, your everything is different.  You are a different person and therefore your way of processing is different.  Even my sister and I, both losing the same person in the same way, are going to experience this loss differently because we are different.

I’m not saying don’t help or offer your thoughts to people going through this process, some of the greatest help through this has come from friends who’ve been through it, I’m saying think before you speak.  Your desire for your whole completely missing parent doesn’t mean that my sorrow for my declining and slowly vanishing and suffering parent is invalid.  I can’t embrace my time with him anymore because time with him means sorrow and pain.  It means watching him search for words, it means watching the odd shape of his mouth, it means trying to understand the gobbly gook that is speech, it means seeing the pain on his face, and it means watching him sleep and fade in and out of consciousness.

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As many of the people in my life know my Dad has terminal liver cancer. He’s going to die, and it’s going to happen sooner rather than later. I am often asked how he is. I find this hard to answer because I don’t want to give false information or false hope. He’s doing pretty well. His doctors are good and are managing his palliative care well. He is handling it with Grace. Being a retired priest and Christian he has no doubt as to what happens next and in many ways seems to see it as the next great adventure. All outward signs say that my Mom is handling it well as well. There’s this great acceptance that comes from both of them when we talk about it. I am as always amazed by my parents and their faith and trust that “All Shall be Well”, whatever happens.

On the rare occasion that I am asked how I am doing I don’t know how to answer. I’m doing lousy, and I often don’t know how to put that in words as well as feeling like it’s not fair for me to say that. I am angry at God for putting my father through this. My dad is not perfect but he is a good man. He is a man of faith and a man who’s always worked to share his faith and God’s unending grace with others…and yet once again his health fails him. I am terrified that I am going to break down and not be able to stop. I am sad. I am frustrated with myself that I can’t be faithful and trusting in this process. I am tired, no matter how much or how little sleep I get I am just tired. My brain doesn’t want to work half the time. I keep waiting for the next shoe to drop, the next stage in this process.

People tell me how lucky I am to have this time, to know it is coming and where that may be true there are moments when it feels like a curse. I’ve always known that someday I was going to lose my Daddy, I’ve always know that I was going to lose my Papa sooner rather than later I’m just not ready for it to be this soon. I don’t know how to process this, I don’t know what to do, how to help make it ok for him, for my mom, for my sister, for all the people who love him. I don’t know how to deal with the knowledge that there are things that aren’t going to happen. My father’s never going to walk me down the aisle (when and if I get married), he will never see my kid’s (when and if I have them), and they will never know the amazing man who can make a mud flow funny, who taught me to play chess, or the fine art of haggling at Monopoly. The man who taught me the joy of a well-timed bad joke. The man who encouraged me in all (ok most) that I did, the man who thought me to ask questions, to understand my faith, and to fight for what I believed in.

I will miss being goofy and strange with, making my mom worry about our sanity. I will miss debating with him, learning from him, and just talking theology, politics, and so much more with him. I am who I am in many ways because of him, I will never regret being a Daddy’s girl!

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My Grandmother is dying.  In all reality we are all dying, but Grandma has been in the process of dying for many years.  There have many instances over the last seven years or so in which we thought we were going to lose her.  This time it’s not a matter of if but when.

My Grandma Evelyn is the last of my Grandparents, she is about four weeks from her 98th birthday.  I was blest to have all four of my grandparents in my life for 23 years.  Over the last seven years I’ve lost many of my family member and have handled some better than others.  But I digress.  

My Grandma is dying.  I have such a terrible mix of feelings regarding this.  There is a part of me that just wants her to get on with is.  Which is an awful thing for a Granddaughter to think, for anyone to think.  The problem is for the last few years she has been telling us, at least my mom and I, that she’s lonely, that she’s tired, that she missed Don (her husband) and Steve (her son).  But when we tell her that it’s ok, she can let go and be with them.  She tells us that no no she’s fine.  She doesn’t want to die, she’s happy, blah blah blah.  

She is a good Christian Woman who believes in Heaven, talks often about how she knows those we’ve lost are in heaven and yet she’s afraid.  I know from conversations with my father, who’s an Episcopal Priest, that this unsureness is normal.  I also know as he’s in many ways her cleric, who she’s goes to with religion and faith based issues, that she’s afraid that she not good enough.

Over the past few months she taken a turn for the worse.  It’s less and less frequent that she recognizes her family, most days she has no idea who my Mom is and yet she spends hours every day with her.  

About a week and a half ago I went to visit my grandma, due to being sick I hadn’t seen her in about a month and a half.   When I first got there she knew who I was, but as time progressed I went to being her daughter, my mom and my mom who was there was an unknown entity, to being my Cousin Shannon (if you know my cousin the idea of confusing us is pretty stinkin’ funny).  When we left I think I was myself again but I’m not sure.  Mom says she remembered that I was there, so that’s a plus I guess.  But she was in good spirits, sitting up in her chair is drifting in and out of consciousness.

Not long after this this visit it was decided that for her safety, she tried to leave the floor saying she was going home with her Daddy, she needed a nurse with her 24/7.

Jump forward to two days ago.  After having dinner with my folks we went to grandma’s room.  She knew who I was when we arrived, telling the nurse in a garbled and grainy voice that I was her granddaughter.  But she was agitated, wanted desperately to get out of bed but couldn’t, was flailing her legs and gripping to mom’s and my hands like we were a life line.  She looked frail, and unkempt (a situation in which I would never have thought to find her), she was not the woman I knew.  Mom and I sung to her trying to sooth her frustration, her agitation, her confusion.  She began, singing/talking incomprehensively and got more and more agitated.  At one point I had knelt down by her bed as to not be looking down on her as I soothed, hushed, and expressed my love in a way I would settle on of my upset children.  

It was not long after this that she stopped singing/talking and became even more agitated.  Looking at me with such hatred and anger in her eyes that I backed away in fear and then sorrow.  I know in my head that in that moment she had know idea who I was but am having trouble expressing it to my heart.

During our time with her she expressed her need, desire (?), to go, to leave and by no stretch of the imagination did I think that she meant the room, she meant this world.  Now that she is ready to let go it’s as if she can’t.  I find myself battling between frustration with her need to be ok because she told Don she would be, her words, and God for not having taken her before this pain.  She is now 100% dying and she is dying in a painful and awful way.  There is nothing anyone can do but try and make it better but even then she’s so lost that it’s nearly impossible. 

I find myself begging God to take her home, to make it better, to end her suffering, and my Mom’s.  My mom is not her only family left but she is the constant Rock going back daily, multiple times a day, to try and help ease her pain.  Doing something that makes me realize just how strong my Mom is.  

Throughout the day yesterday she had periods of time in which she stopped breathing.  The end we know is near.  There is a part of me that will be so relived when she is gone, no longer suffering, and there is a part of my that will and is grieving the loss of my grandmother.  An amazing woman who was so strong for so many years. 

 

My Grandma and I in better days this past summer. 

 

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