Tag: Dying

Hospice Day 11


 

Last night was an absolute night out of hell.

The subcutaneous syringe driver was halted as Vic’s tissue is so bad.  Vic is now on 100mg Durogesic patches and morphine syrup.  Initially it appeared to be an okay solution.  Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.

Yesterday morning Vic was great!  She obviously still has some of the intravenous morphine in her system.  (I also gave her extra morphine syrup as a precaution).  She went to breakfast with her friend Angela and had a wonderful time.  She glowed when she got back.  Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking.  Madam was even wearing a shoe with a little heel (which we made her take off).

In the afternoon Vic started looking grim.  She was nauseous and suffering from abdominal cramping.  Her tummy was distending.

By 10pm last night Vicky was sobbing with pain.  By 11pm she was vomiting uncontrollably.  She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.

This morning I had an early meeting.  Half an hour into the meeting Vic phoned sobbing uncontrollably.  I was unable to hear what she was saying through her sobs.  I just said “Baby, I am on my way…”

When I arrived at home Sr Ciza from Hospice was here.  She had given Vic a morphine injection and an additional 25mg Durogesic patch.  Vic was already looking so much better.  Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge.  I don’t think I am ready for that yet.

Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared.  Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast.  I nodded my “consent”.  You see I had just read a comment from an incredible brave lady.

“my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before.  My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/” 

Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy   http://ohwhatapain.wordpress.com/author/ohwhatapain

The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane.  Since my first surgery, my life has basically come to a screeching halt.  Any living I do is now in the slow lane, sometimes I never even make it off the shoulder.  I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings. 

It’s hard to deal with the slow down.  I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that?  Before “all this” I felt so strong.  I felt like I could take on the world.  I used to be busy everyday, all day and the craziness of my schedule was like a high.  Now, I have maybe a quarter of that activity, some days, I have none.  The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house.  Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion.  But I am still me.  I refuse to let the pain change who I am.

I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse.  I still push  myself to do more, even if it comes with the cost of a day in bed.  When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often.  That part of my brain that refuses to accept this “new normal” can’t give up certain things.  One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body.  A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”

Sometimes the slow down causes resentment.  I get angry that those around me have a life and are busy and that adds to the mood swings and depression.  The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest.  For me, a trip to Wal-mart requires a rest.

Flares do bring up an interesting realization, though.  Until things get as bad as they are right now, I didn’t realize that I was in less pain before.  So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison.  Now if only I could return to feeling like crap instead of complete crap…

So, the bottom line is, what do you do when life slows you down?  http://ohwhatapain.wordpress.com/2012/09/26/flares

I wish I had understood Vic’s pain-filled world earlier.  I am so sorry for getting angry with her for trying to live.  I wish we had more time.

Hospice counseling….


“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

via Hospice counseling…..

Hospice counseling….


We met with Alan, the Hospice counselor, today.

On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath.  “I am like you Oumie.  We don’t talk…”

“Yeah”  I said.  “But I really think the time has come for us to talk to someone.  Besides it is part of the Hospice thing.  We have to do it!”

“The whole day I was thinking of shrink jokes” Jared said.  “Do you think I can ask him ‘how does this make you feel?‘”

We all laughed.

“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned

Alan is a short young man.  I think he is in his early thirty’s.  We shook hands and he asked us how we wanted to “do it?”

The boys went in on their own.  I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death.  Thirty minutes later I was invited in.

“The boys tell me they are coping well.  They don’t see the reason for seeing me…..What do you think?  Are you guys coping?”

I was truly taken aback.  “Yes, I think we are coping. ”

“So Tersia, why do you think the boys need to see me?”

I did not speak for a couple of minutes.  I was grappling with my brain as to how much I should tell this stranger.

“I think the emotional roller coaster is getting to us.  We have said our goodbyes so many times and Vic always bounces back!” I eventually said.

“Yes, Jon-Daniel said so” Alan replied.

“I worry that the boys live in a home where death lingers.  There is not enough laughter in our home.  It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused

“I get impatient with Vic.  When she has half a breath she will organize a party.  When the pain medication works she will not pace herself.  She will hurt herself and  then I have to pick up the pieces.  Sometimes I am scared that her suffering will not end. ” I continued.

“What type of party will she organize?” Alan asked.

The boys and I laughed!

“It is only a figure of speech….” we explained.  “She will try and do things with the boys and hurt herself.”

“What type of things?” Alan asked

“Drive and take us for a milkshake” Jared replied.

“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

“It is not about the final moments.  It is not the final words or even the final disagreement.  It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything.  Life is hard for all of you right now.  It is okay to be scared and to get irritated.  You must tell your Mom how you feel.  I am not saying you must back-chat.  What I am saying is that you must tell your Mom how her actions and illness makes you feel.  The household consists of more than one person…. You all have the right to living…”

The boys asked to see Alan for another session….  Thank you God for another angel!

 

Mommy, I thought I had more time….


Jared and his proud mommy

“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”  –Dame Cicely Saunders

The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman.  She has a gentle voice and long fingers with short nails.  She drives a Jeep and keeps large dogs.  She looks like a naturalist.

“I am Dr Sue Walters from Hospice.  The Pain Clinic asked us to see you.  Is it okay for me to examine you?” she asked Vic in her gentle voice.

Vic’s abdomen was severely distended and very tender.  She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication.  Vicky’s vitals were poor.

Sue administered a strong morphine injection.

“Vicky, you appear to have an abscess on the right-hand side of your abdomen.  The skin is hot to the touch and distended.  I think you have a partial obstruction.” Dr Sue said to Vic.

“I am here to see if Hospice can help you.  Do you realize that you are very ill my love?”  Dr Sue asked Vic.

“Hospice will not hasten your death my love.  It would be our aim and purpose to provide you with pain relief and quality of life.  We will treat you and not the disease.  It is exclusively your decision whether you want us to help you and how you want us to help you.”  She explained to Vic

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care

Vic was in so much pain that she was barely able to speak.  Tears welled up in her eyes and she softly said “Please doctor”.

“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked

“I want no life extending treatment.  I am so tired doctor” Vic whispered.  “I can’t do this anymore…..”

“That’s fine my love.  We will try and relieve your pain and give you some quality of life.”

“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.

Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a  subcutaneous morphine syringe system by that afternoon.  Hospice would arrange for counseling for the boys.

She hugged me and left.  All of a sudden I felt so alone again!

Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.

The first couple of days Vic slept a lot.  She was tired but there was immediate pain relief.

The nausea subsided and the partial obstruction cleared two days later!

The first infusion site was in her leg.  Within a day and a half the area “tissued”.   A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain.  We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm.  Within two hours the needle came out again and the morphine was running onto the skin.  It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.

Last night the tissue in the abdominal area had tissued again.  It was also bloody and the morphine was running onto the skin and not into the tissue.  Vic was nauseous with pain.  I had no option but to remove the needle and re-inserting it into a different site.

“I think we should put it into the other side of your tummy” I said

“Mommy, I will insert the needle if you help me…” Vic replied

“No sweetie” I said.  “I will do it”

My heart was in my throat.  I removed the needle and cleaned the injection site.  I disinfected the new site that I had identified.  I took the needle in my hand and lifted the skin.  I pushed the needle against the skin.  I assumed that the needle would just slide in… It did not just slide in!  There was resistance!! I let go of the skin and changed my position.  I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.

“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.

I exerted pressure on the needle and it slid in…  Sweet success!!!!

“Oh Mommy you are such a star!  Thank you.  That did not hurt at all!” Vic gushed.

I do not believe her.  I had felt her little body tense up as the needle went in.  It hurt!

My entire body shook.  The bile rose in my throat and I slowly let out my breath.

We have all come such a far way.  Until last night I could not watch anyone stick a needle into my child.  Now I have stuck a needle into my child’s flesh.  I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.

The good news is that I was actually able to work the whole week.  It was the annual African Air and Defense Show and we exhibited.  Normally I would be absolutely frantic about Vic.  But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.

Vic is far more active.  She is truly so much better.  The partial obstruction appears to have cleared!  She spends time chatting to the boys.  On Saturday she took Jared shopping for a new shirt and shoes!

On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡”  Vic handed him his baptism candle that she received 15.5 years ago at his christening.  He lit his candle as he took responsibility for his own walk with God.  Vic and I laid hands on him and prayed for him.  It was so touching.

Joyous day!

Vic attended Jared’s confirmation service.  I have never seen a more radiant and proud mother in my entire life.

Vic has reached another milestone in her life.

Pain keeps you alive!


She explained to us that Vic’s pain is what is keeping her alive.  ”An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.”  http://en.wikipedia.org/wiki/Adrenaline_Rush

via Pain keeps you alive!.

Pain Clinic 11.9


Urghhh!  Yesterday was a horrible day!

Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before.  Although it is on an appointment only basis, it is also first come first serve……

With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist.  Vic was not able to go with yesterday morning so I set off on my own.  By now the Pain Team knows me well.  Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.

Generally I do not have a problem in getting her script even when I am on my own.  I walked in just before 8am and the waiting area was packed!  My heart dropped into my shoes.  It was going to be a longggggg day…..

Surprise, surprise – no Prof Froehlich!  Just a young anesthetist I do not know.  It was going to be an even longer and more stressful day than I imagined when I walked in.

Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts.  That was a first!!!  All of a sudden the queue was much shorter!  There was hope….

I was the second “patient” to be consulted.  Yeah!!!

The Pain Clinic works on a two file system.  The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc.  The patient keeps the brown file.  It contains the prescriptions.

http://www.mardel.com/hot-pink-file-folders.aspx

The new doctor introduced himself and apologized for the professor not being there.  He started paging through the pink file.  He frowned.  He read.  He paged back.  He frowned more.  He shook his head in disbelief and clicked his tongue.  I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock.  He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”

Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.

“Who takes care of Mrs Bruce?” he asked

“I do”

“Do you have help and who is looking after her now?” he asked

“My husband is amazing.  He helps and her boys help.  I also have a domestic who assists.”

“Are you able to work taking care of Mrs Bruce?” he asked

“I am fortunate.  I am able to work from home.”  I said

“How are her sons handling her situation?” he asked

To my shame I started tearing up.  The Sister got up and handed me a tissue.

“It is very hard for them.  I sometimes see the helpless despair in their eyes when they look at her.  Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital.  She was too ill… And now the doctors suspect he may have Lymphoma.  He is only 15…”

“How is she handling it?”  he asked

“Vic is absolutely devastated.  She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.

“Are you having any professional counseling?” he asked

“No I replied.  We use all our financial resources to pay doctors, hospitals and pharmacies.  Counseling cannot and will not keep Vic alive.” I replied.

He started writing the prescription.

“Is she coping with the pain medication?” he asked

“The Jurnista is amazing.  It has made a phenomenal difference in her pain management.” I said

“The hospital will not supply you with the Jurnista.” he said

“I know.  May I have a private script for it please? I asked

“There is no morphine syrup in stock doctor.  Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.

He handed me the brown file and an envelope.

“I have written a referral to the Hospital’s Psychology  Department.  You need to see someone as a family to help you through this.” he said.  “There are other palliative care options other than Hospice.  I see in Mrs Bruce’s file the Prof is working on it…” he concluded

I did not dignify his remark with an answer.  We shook hands.  He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed.  I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.

Today I went to meet Lani’s foster son.  I am going to gloss over my visit with baby Izak.  He is so cute that I need to dedicate an entire post to him.

On my way home I had a phone call.

“My name is Christa.  I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance.  Would 9am tomorrow suit you?”

“Absolutely.” I said.  “Do you need directions?”

“No, I have a GPS” she said….

It is going to be a longggggg night!!!

Whispered secrets



Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

 

Whispered secrets


Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

It is Monday the 3rd of September 2012.  Vic had a horrible night and looked absolutely terrible this morning.  Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.

Vic wanted to go with but Jared held her little body in his arms and said: “Mommy please stay in bed.  Oumie will take me to the doctor.  I promise I will phone you if I am scared or need you.” 

Vic sobbed uncontrollably.

“Please Mommy, you are just going to be more sore and sick if you go with now…”

Jared and Jon-Daniel are strong and terribly protective of their Mommy.  It stresses and scares them when Vic tries to do too much.  The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price.  They feel guilty…they assume responsibility for Vicky’s actions.

“Mom picked me up from school and is now very tired….”

” Mom came to watch me play cricket and is now sick in bed for a week again…”

” Mom broke another vertebra taking me to school….  “

Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives.  They are missing out on their own childhood experiences.  Most of the children in Jared’s class are having “Sweet Sixteen” parties.  Jared is invited but chooses to stay home.  He says it is because the kids smoke and drink…  But I know he does not want to leave his mother.

Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking.  You see, although we know death is inevitable, the timing is uncertain.  It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.

Yet Vic struggles with dying.  It is impossibly painful to leave her sons.  To let go….. To allow them to be grandmothered….

So, today I again, experienced the unbelievable selflessness of a parentified child when Jared said “Please Mommy, you are just going to be more sore and sick if you go with now…”  https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012.  The sonars show at least two more kidney stones.  Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution.  The urologist will perform ureteroscopy.  Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when  Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.

Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother.  He will bravely write a maths test and excel at it.  Success and high marks are his coping mechanism.

How unfair is life.

Happy birthday my angel child!


Vic and all the men in her life admiring her PC tablet

Friday morning the boys woke Vic with breakfast and coffee.  They sang “Happy Birthday” and gave her beautiful gold earrings that they had chosen and paid for themselves.

Vic went to breakfast with Leeann at 08:00 and set off for the Beauty Parlour with Esther at 10:00.  She was home with beautiful nails at 11:30. Poor little poppet!  She was so exhausted.  She got into bed and slept for the rest of the day.

We woke her at 18:00 to get ready for dinner.  She was in too much pain.  She sobbed.

The boys spoke to her and told her “We will have takeaways and have dinner in your room Mom…like we did on Mother’s Day.  It will be fun!” Vic had spare ribs and the boys and I had wonderful hamburgers!  Danie is so health conscious he had the fish!  It was a lovely evening.  We were sprawled all over her bed, laughing and joking. I sat there and my heart filled with joy.  My beautiful little girl, her sons and my wonderful husband once again celebrating her birthday.

When Danie and I gave her a Tablet Vic was over the moon.  She loves gadgets and has wanted a PC Tablet for a long time.  Vic said “Mommy I can’t believe I got a Tablet that I don’t have to drink!”  We laughed until our tummy’s hurt.

Vic and I

We had arranged a barbeque for Saturday afternoon to celebrate not only Vic’s birthday but also Tom (son-in-law married to Lani) who has a birthday on Tuesday – 4.9.2012, Henk (grandson – birthday 2.9.2012)and Francois (Tom and Lani’s friend – birthday Monday 3.9.2012).  We hoped that Vic would have recovered enough to be able to enjoy the afternoon.  She rested until 14:00 and got dressed just in time to meet the first guests. We planned to sit under the trees but the weather turned.  A cold wind blew and we moved the party to the house.

Lani’s magical tables!

Children were running around and laughing.  Lani had prepared party packs for the kids and they had a ball!  The table settings were beautiful.  Lani is a magician!  Clusters of people were standing around chatting and laughing.  For a short while our household would appear to the world as a perfectly happy and normal household.

Vic looked so beautiful.  To the untrained eye she looked just like a normal, healthy young woman.  That is until she moved…she shuffles like an old lady!  She insisted on having photos taken with everyone as they arrived!

By 19:00 Vic was exhausted!  She conceded defeat and changed into her pyjamas on and slippers.  She came back to the table and tried so hard to hang-in.  Poor little poppet!  She cried from pain

Vic had a very bad night.  “What else can I take for pain Mommy?” became a refrain!

Last night Jared developed kidney pains again.  He said it was the same as last weekend’s kidney stone pains but worse.  This morning we decided to take him to the casualty department (ER).  Vic very bravely got dressed.  It was however very clear that she would not be able to go with.  She was just in too much pain.  She was heartbroken and sobs racked her little body.  “I am letting my son down….”

Jared had lots of pain meds and tomorrow morning we will see his urologist.

Our household is back to normal.  The laughter has subsided…..

It was a happy birthday………

Henk Birthday Boy 2.9.2012
Francois 3.9.2012 with Lani and Tom  4.9.2012 in the background

Fun was had by all!