Saturday, April 17, 2010

A Year Ago ...

DSCF0591_591_141 by you.
Ruby (mom) June, 2008

A year ago today ..it was a Friday.

A year ago today .. I was relieved I finished the taxes.

A Year ago today ... I did some housework.

A year ago today ... I had mild nausea and had it intermittently for about a month.

A year ago today ... I was feeling guilt for not going to the nursing home on Thursday ..the day before ..and I was feeling guilt that I didn't call. I always called the staff ..to have them put Mom on the phone when I missed getting there when I said I would or for 3 days or more. In 6 months ..I was always there 2 and 3 times a week except for three ...5-7 day stretches during that time ..but I called... I ALWAYS called. It was complicated though because I had to get a hold of staff (they hardly answered phones) and then I knew I was pulling them away from something to put Mom on her phone. I even worried that when they walked away ..if they forgot that she might inadvertently strangle herself with the cord if she somehow did something weird with it in trying to hang up the phone ..if she remembered. For some reason that week ..I just did not have the energy to make a call. Her sweet aide ..Dianna ..was the only one in the entire facility who took the time as requested on the sign I hung over Mom's phone ..to pick up the phone and call me so Mom and I could talk. And Dianna stayed with mom and then assisted her in hanging up the phone.

A year ago today ... I was planning on going to the nursing home to see Mom.

A year ago today ...I showered in the early after noon and was combing my wet hair out when a nurse from the nursing home called to inform me that Mom had a distended bladder from not voiding, but that after the foley catheter was placed ..Mom stated "That's a relief." I asked how her wound was doing and she told me it was "healing nicely" and then I asked .. "How is she now?" The nurse cheerily stated," Oh ..she's FINE! She's talking with everyone now!"

And so ...a year ago today ... hearing that she was "FINE and talking with everyone", laziness ...coupled with the mild nausea ..caused me to tell the nurse that I will definitely be there tomorrow ..in the morning and to please tell her that. I don't remember if I said to tell her I love her. I think I did not.

A year ago today ...I did have a twinge of guilt for not going over as I had planned ..but was also comforted knowing that according to the nurse ..my mother was fine... and I imagined her chatting with them.

A year ago today .. after speaking with the nurse ..I decided to weigh myself and so went into the bedroom, picked up my scale and as I walked to the spot where I place it on the floor .. with the sun streaming in the back bedroom window...I saw myself in my vanity mirror, while simultaneously thinking, "I'm getting tired of going over to the nursing home."

I had never had that thought so distinctly before.

A year ago today ..I weighed a bit more than I do now.

A year ago today ...I did some private blogging and expressed my concerns about the nursing home, Mom's care and I was thinking of asking my own urodoc about mom being unable to void. (I wish I did now ..although I'm sure it was too late anyway)

A year ago today ..I cooked dinner and ate with Mr SeaSpray and younger son.

A year ago today ...I was blogging at the computer when around 6:30pm ... I got the call from what I could tell was a distraught nursing supervisor telling me my mother had a GI bleed.

And a year ago today ...when I heard that ... I instantly knew that my mother was going to die that night. I knew.

A year ago tonight ... it was the longest ride I had ever experienced to the hospital ...or anywhere.

A year ago tonight ... nothing in my life prepared me for the profound emotional pain and fear that enveloped me as I walked into her room ...seeing her on the respirator and that death had certainly claimed most of her being. NOTHING prepares one for that. I thought ..I'd be prepared ..that I understood things and had even seen it before ..with other patients and their families. I DID know what to expect ... but NOTHING prepared me for the searing hot dagger sharp pain that would be plunged into my heart ..my spirit being ripped apart from the inside out and rendering me as helpless as a little girl ..her little girl ...hovering by her face and stroking her hair ..as through tears ..I tried to tell her to hang on and that she could beat this and that we all loved her so much and to please, please not die.

A year ago tonight ...I took comfort in the knowledge that the hearing is the last to go ...but I also wondered ..if she had gone so far past the point of no return ..that she could no longer hear or feel us ...but I trusted that God would somehow impart our words into her spirit if it was no longer audibly possible.

A year ago tonight ...I was so selfish in my request that she please hang on and not die.

A year ago tonight ..I should have assured her that it was alright .. to go in peace ..to go knowing that we loved her and to go be with God and rejoice when she sees all her loved ones and her beloved pets that passed on before her.

But ...a year ago tonight ... I was incapable of thinking logically ...beyond losing my Mommy. It felt that primal ..my Mommy was going to die and it was the little girl within that took over my adult reasoning. There was a mix up with her advanced directives and the staff was trying to contact her doctor, but he never got back to them (I was secretly and selfishly glad about that), and so they were looking to me for a decision ...and I could not give them what I know they wanted ..what I knew ..I knew ..I should say. I could not.

A year ago tonight ... I desperately tried to comfort her by reading some healing scriptures to into her ear ..but I had grabbed a King James version and my mind was competing with the old English ...accompanied by the distracting noise of the respirator and pumps. So in frustration ..I gave up.

A year ago tonight ... I remembered how she hated the cold ..and she felt so cold ...and so I requested another blanket ..a heated blanket. I thought how awful it would be ..if we all assumed she could not feel and was really cold. I tucked her in ..lovingly tucked it around her. She would've loved it if she knew. In retrospect ..I wonder about all of this ..because I vaguely remember the hospitalist telling me that they could not give her pain meds for being intubated because her blood pressure was so low. If that was the case ..then she probably did not feel the cold ..because she was not resisting being intubated ..although ..she may have felt it but not had the energy to resist. (I don't have the medical expertise of a licensed professional ...but I think that right up to the very end of a person's life ..even if in a coma or a state as Mom was ... I think that we should all assume the person can feel and hear and treat them as we would want to be treated... making them as comfortable as humanly possible in their state and treat them with the utmost dignity and respect. Because how awful it would be ...if indeed .. helpless human beings were not only experiencing the pain and trauma from what was going on in their bodies ..but additionally subjected to unnecessary pain and discomfort.)

A year ago tonight ...my prayers (as I saw Mom aging) were answered ... for the last few years, I prayed that she please not die alone ..that when her time came ..if people couldn't be there ..that Jesus, angels and or family could be there so she would not be alone and afraid. A year ago tonight ..that prayer was answered in a big way ...because we were all there ..even her great granddaughter to be born the following month was there. My dear friend Debbie also drove over and younger son's friends stopped by too. Mom was not alone. We were not alone.

A year ago tonight ..amidst the tears ... I was comforted to see a former coworker ...a respiratory therapist I had worked with years back ..before he switched over to this hospital. He was so sweet. I am glad he was on. I am glad he was the one who took care of my mother. It helps to see a familiar face in a medical environment ..particularly when you are scared.

And a year ago tonight ... through tears and with the noise of the equipment behind me and a bustling emergency department in front of me ...bewildered ..I said .."I don't understand ..how did this happen?" All the while ..in the back of my brain ..I knew ..she was 85, she was declining in health and she no longer had the quality of life she had ..because she could do nothing for herself ..but feebly feed herself... I knew. But I also knew she had been complaining for months of abdominal pain and now here she was dying of a GI bleed.

And a year ago tonight I said, "I don't understand. I know she had a little wound that was healing. ??"

And a year ago tonight, "The doctor and the nurse looked at each other for a second ..and then the doctor said, "Your mother had MULTIPLE little openings in her skin and what your talking about (she described location) and said it was open and OOZING!"

And a year ago tonight ... the concept of time was confusing ...because it seemed to be moving too quickly ...I wasn't ready to say good bye ...I wasn't ready to let go. Yet it seemed to be as though we were in a surreal state of stand still time ... a place where reality was right in front of me and yet the bustling ER ..outside Mom's room was another dimension of sorts ..faintly detectable ..but seemingly far away.

A year ago tonight ...I finally summoned up the courage to go to the nurse's station and I told the doctor that I know what they wanted me to say regarding Mom's care and I could not. I cried. I told them that I was sorry ..but I needed help with this. That I just could NOT make this decision about my mother. I was her daughter and I could not. I knew then and I know now ..that because I was her daughter ..I should have humanely given them the answer they needed. I even knew I HAD too. Even though I could see death was winning ..i could see the increasing physical changes ..I still resisted. But ...I suppose ..it is also why in desperation ..I asked for help.

A year ago tonight ... within five minutes of my asking the staff for help with my decision ...the hospitalist came into Mom's room and requested that I follow her into the room that no one ever wants to have to go to when they have a loved one in the ED. Together we decided on a plan. i could see she was preparing me for Mom's imminent death ..but we still made plans for ICU ..but with no extraordinary measures to be taken and certainly nothing that would cause her additional pain and discomfort. I was acting like there was a chance. I knew there really was not.

A year ago tonight ... about 5 minutes after being with the hospitalist ...I sat on one side of Mom... holding her lifeless hand and my husband on the other, with the kids standing behind him... when one of the monitors gave off an alarm. I continued stroking Mom's hair, holding her hand, crying and talking to her. I recall her nurse poking her head in ..don't remember if she shut it off or if it did on it's own.

A year ago tonight ...sometime after midnight ... Mom died around 11:30. The kids left. My husband and I stayed seated by Mom. we were quiet. I was softly crying. And then I was getting annoyed that the respirator was still going. I asked the nurse if they could please shut it off and she apologetically told me he was tied up. I understood ...but I was frustrated. I just needed to sit with her quietly. I went back to holding her hand. He finally came in... sweetly apologized and said some comforting words and my familiarity with him in another medical environment ...amidst strangers in this ED really comforted me. It was such a minuscule thing as compared to losing your mother ..but it helped.

A year ago ..sometime after midnight tonight ..my husband gently said that he thought we should leave now. And with tear filled eyes and a now pounding headache ..I looked up at him and I said, "But if I let go of her hand now ...I will never be able to hold it again." And so we sat a little longer.

And a year ago tonight ..I said .."Okay ..I know ..it's time to go." I reluctantly let go of her hand, stood up and we walked out of her room and over to the nurse's station and thanked them for all they had done. They had been so helpful, patient and compassionate. I also asked for a basin ..because I felt like I was in borderline migraine territory and like I would be ill.

And a year ago ..after midnight tonight ..as we stepped away from the nurse's station ...I looked in at my mom for one last time. It did not feel right to be leaving her there. I knew what they would do and where she would go ..and it did not feel right. And it bothered me greatly to think how strangers would now have control over her and where she would be going after the hospital. It all seemed wrong. I knew she was not there ..but her life as I knew it passed before me in my mind's eye as I looked at her. Letting go and walking away ...is the hardest things I have ever had to do in my entire life.

And a year ago tonight ..after midnight ... as we were almost out of the ER ..a random nurse passing by ..with obvious heartfelt compassion ..said she was sorry about my mother. Her empathy and compassion was soothing and I was struck by her caring to take the time when she was not assigned to us. I know ..that most anyone would express sympathy ..but it felt monumental to me at that moment.

And a year ago after midnight tonight ... the car ride home, walking in the door ..being home it was surreal ..like I was there ..but was not. I took medicine for my head, tried to rest but could not and so while my family slept ..I cleaned ..and did wash ..and cleaned .. and more wash and so on. I saw the sun come up over the mountains as I busily flit from here to there. There was something about the motion that just helped. I'm not sure what it helped ..it just did. So did all the people that called, stopped by and sent cards. And a dear friend and neighbor dropped off enough food to feed an army and it was such a blessing to have that. I don't remember when I finally laid down the next night. That week was like being in a tunnel in another dimension set apart from real life ... and then things began to really sink in.
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I have lost a lot of people in my life and these last 4 years ..people I was very close to ..but nothing prepares you for the loss of a parent. At least that has been my experience. I don't know if it is because parents give you life and/or raise and nurture you? That there is this primal bond that when broken ... just rocks you to the core of your being ..because even though you've become an adult ..gone off on your own ..you know your parent is still on the planet ..but when they die ..that subconscious primal cord is broken. And even though when a parent becomes elderly ..and you have been parenting them ..they are still your parent and so this subconscious protective covering is now gone. Losing a parent is a profound loss. It is the natural progression of life ..but it is a profound loss. It was complicated between mom and me and that may have exacerbated some of my grief and subsequent reactions. My PCP lost his mother a few years back ..and after mom died ..he told me that when a parent dies ..it is normal to feel fear. I wasn't feeling it then ..but have since come to understand what he was telling me.

mom in bathing suit by you.

I know Mom is in a better place. I have family and friends and I know we are supposed to look forward and appreciate what is in our lives right now ..that we only have today ..and to make the most of it. I am so very grateful for all my blessings ... but today .. a year later ..I woke up with all these feelings and I did the best I know to do when feeling this way ..write. Write and write and write ..until you don't have to anymore.

My mentor once told me ...that to heal .. a person needs to feel heard and they should tell their story as often as necessary ..until they don't need to anymore. When a person feels heard ..it validates them as a person and aids in releasing pent up concerns. Well .. I have certainly verbalized my thoughts over time ..but it is also most cathartic to write.

mom and me baby pocs by you.
Mom and me in MA

me cowboy hat by you.
Grandpa and Grandma MacDonald, Mom and me (4 yrs old) at the Jersey shore.

13 comments:

Chrysalis Angel said...

I'm sorry for your pain, Seaspray.

rlbates said...

Ditto, CA. {{{hugs}}}

John McElveen said...

Hurts like hell doesn't it?

Heaven is a better place, but HERE is where we still want them!

Your Mother would be proud of you!

Hugs and Comfort....

John

Rositta said...

Thinking of you... I'm still crying three years later on the night of May 11th. I was lucky enough to spend that last night holding my Mom but like you, it was hard to let go. Take care...ciao

Lockup Doc said...

SeaSpray, thanks for sharing that. I wish you peace.

SeaSpray said...

Dear Chrysalis,Ramona,John,Rositta and Lockup Doc - Thank you for your thoughtful comments and hugs. Warm hugs back to all of you.

I was thinking of you (Ramona, John and Rositta) as I wrote and as anniversary neared and still am since we share the mutual pain of losing a parent recently.

Yes ..it does John, but you are right about heaven. It was selfish of me to want her to stay when she could no longer do anything for herself. She was fortunate in that she lived independently for 85 years and 4 months and then a couple of weeks in the nursing home ..must've had mini strokes that exacerbated dementia and is why she could no longer do even the simplest things...use a remote, read, etc. and she was only in there 6 mos ..which must've been forever to her.

Awww..Rositta ..I understand and I am sorry. YOU were such a wonderful daughter to your Mom.I think it is wonderful that she knew you were with her.

Oh Lockup doc ..I wish I could have peace about all of this but don't know how I can. The only thing I can think is to give it to God ..but I keep taking it back. I guess ..like everyone ..i have to go through the grieving process. And we had a complicated relationship ..even tho we loved each other and so that makes it worse. THANKFULLY ..we did have the 6 months ..even amidst exacerbating dementia where we did say some things and I got to do little things for her in the nursing home. ha! One night ..when I was upset that I found Mom falling out of her wheel chair and no one knew about it ..as I was assertively (not rude) on their case ..she looked amused. I took it she liked me being her defender.

SeaSpray said...

I just worry that the last week and I wasn't there (for the 5 days since Easter)that is when she needed me most and I think she had an infection from a bed sore that they told me was healing ..but her aide called me and told me she knows for a fact that it was the 165th and her dressing hadn't been changed since the 10th because they have to mark it. Maybe I could not have changed the outcome ..but by God I could have seen to it she was more comfortable and I would've been there at the end ..holding her, talking and who knows what else we could've said?

They didn't call me to tell me they were wondering why she was lethargic. they didn't call me to tell me her coumadin (always normal) went up high and they didn't call me to tell me she was refusing food as of thursday night. They used to call me if she had a cut or a med change or a doctor appt and they didn't call me for those things. And Mom's aide also told me that when she came in Friday morning her diaper was dry and her abdomen was distended. She told the head nurse that mom was refusing food and didn't seem right and asked if they should call me and the nurse said "No ..because then she'll come in, and ask questions and want tests done." Then that nurse did call me later to inform me that mom had a foley cath and when I asked how much she put out she said she didn't know because they used a 16 gague catheter and she voided around it. If that nurse instead of telling me she was FINE and talking" told me any one of those other things ..I would've been right over there! I am mad about it. I know ..I have to let it go. And I don't understand why the ed doc, nurse and hospitalist made a point to tell me mom's little healing wound I referred to was open and oozing and she had MULTIPLE little openings in her skin. And when I called the nursing home the next morning, I politely asked that same nurse why she told me moms wound was healing nicely and the hospital staff said it was oozing and she had multiple little openings? She raised her voice BOLDLY at me and said "YOUR MOTHER DID NOT LEAVE HERE IN THAT CONDITION!" I don't recall her words verbatim, but did write them down elsewhere. Then she softened and said a patient with sepsis will have skin breakdown easily.

I have a feeling things were worse with mom and the nursing home missed it or is covering up.

I decided I am going to look at mom's records to read the initial assessment upon her arrival to the ED.

I have wanted to put this aside ..but I don't think i will have closure until I do. but I DREAD it. I really don't want to know bad things. But if I am wrong and everything was a natural progression ..then while sad ..I will feel better.

I can't help it tho ..I think she at least could've been made more comfortable and I SHOULD have been called. At the very least ..i am calling the nursing home directer. I was nice last spring ..but I think she needs to hear all the things that transpired that are bothering me. I am just not sure if I should request a meeting and request that nurse be there or just make a phone call.

What about all the other people there that can't speak up for themselves and have *No one* coming in to advocate for them? I did do that. But I can NOT believe that the last week of Mom's life ..I was not there!

Chrysalis Angel said...

Seaspray, I know you weren't addressing me, but I read what you wrote and wanted to caution you to take care of yourself now.

You have some decisions of your own to make for "yourself", and it's important to do that. That's all I'm going to say. I just want you to take care of you.

SeaSpray said...

So Angel - are you saying I should forget ..let it go ..because I really do want to ..but I don't know if that is right either.?? Is it just that it's fresh feeling. And Mom's aide still calls me. I feel like she wants me to know something and she tells me a little but ..I don't know ..I have this odd feeling with her. She was really good with Mom. She actually cared. She is from Guyenna (sp?) maybe it is a cultural thing ..the way she is on the phone. She calls me and then I find I have to carry the conversation. I admit I did not return her call and she left her number a few weeks ago. I will. It hurts to hear her voice. But she called me 2 nights after mom died and she is not from this area, but lives closer to the city. She then called me in June, August, January and March.

Does she have an axe to grind with the nursing home and is trying to get me riled up to cause them a problem ..or has she seen abuses (mom) and is trying to get me looking in to it ..but then why not just say exactly what she wants?

I do believe things she said ..because we didn't talk except for 2 times during my visits, but when we talked about these more serious things ..she verbalized things I had been thinking about certain staff and also ..she truly was so attentive with mom ..she SHINED as a stellar HC worker and so did one nurse. the rest of them were mediocre to bad.

When the social worker called me to refer mom to 3 different nursing homes, I asked where her doc went and it wasn't any of those and so I chose that place hopeful she'd only have some rehab and go home, but then withing 2 weeks ..she had (I don't know this for sure) mini strokes and couldn't leave. i wanted her to have the continuity of her own doctor because I knew she was very fond of him. that was a joke though because they only come in once a month and handle everything via fax and phone and alternate months it was his new partner.

One of those homes was a stellar home, but I did not know that at the time. Good nurse to patient ratio. Mom's nH was short staffed.

Chrysalis Angel said...

Seaspray, how did it come about that this staff member and you have conversed over the phone?

I've got to get back to work, I'll talk with you later. Hugs.

SeaSpray said...

Angel - She called me to say she was sorry 2 nights after Mom died. She must've gotten my number from mom's chart. She called around 9:30 at night.

Then she called the end of June or early July and then in August or Sept and then in January and most recently in march ..but I didn't pick the call up and still have to call her back. She lives down below... closer to the city or maybe it's closer to Newark.

StorytellERdoc said...

Powerful writing...healing writing...incredible writing.

SeaSpray, this hit home for me. I still, after four years, miss so much of what my mother brought to my life. Especially, my youngest daughter holds something, undefined, in her eyes that I remember seeing in my mother's. A curse sometimes, yes, but a blessing for the most part. I wish she were still here, but that is only selfish thinking on my part.

This post ranks up there with one of the best. Thank you.
Jim

SeaSpray said...

Thank you Jim. I understand. Your mom would love knowing your youngest has a trait of hers. maybe that is one way God keeps people alive for us ..little things.. and of course our special room in our heart held only for their memories.

I'm sorry you lost your Mom.

I appreciate your kind words about my writing. :)