It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey. Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.
According to Hospice there are FIVE stages of dying.
1. DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)” It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death. Vic has some doors to still close. Her business is in order. She has written letters to her loved ones, bought major birthday gifts and cards for the boys
2. ANGER: Suddenly the terminally ill person is no longer in control of their life. They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now. She has lost control of her life. At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again. Her anger on Sunday morning was directed at me. Her profuse sense of helplessness and loss of control is however not a new feeling. Vicky has endured a long, debilitating illness. Doctor error has robbed her of a life. Illness has robbed her of her dignity. She is angry with God for allowing this to happen to her. She is angry for God not taking her. On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry…… Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident….. At the age of 27 Vicky was sentenced to death…..
3. BARGAINING: I do not know what bargaining Vic has done with her God. I know that I have made lots of bargains with my God. Just one more Christmas….. Just one more birthday…..
4. DEPRESSION: Knowing that you are dying must be depressing! This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness ….. She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family. Vic is depressed because she feels that she has failed her sons. Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered. Vic is depressed period! But with good reason. Antidepressant’s are part of the pain control regime. If it is helping for her pain that is great. I hate to think what her mental condition would have been if she had not been on antidepressants.
5. ACCEPTANCE: Vic is not at this stage yet. This is one of the main reasons why we need Hospice. Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey. Vic went a couple of times and then it became a matter of budget – medication or counselling. Medication won. Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission. Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”
I see absolutely no peace in Vic. She is still kicking and fighting. At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.
We met as a family on Tuesday evening to discuss all our frustrations. It becomes difficult to handle one’s day to day frustrations as we have different agenda’s. A while back Vic asked my permission to give up. She spoke to the boys. We cried and gave her “permission”.
The family immediately went into palliative mode. No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue. We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid. We tippy toed around Vic. The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out. We would show no concern for the amount of pain medication Vic was on.
It is so easy to slip into a “mode”. I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house. We were all dying!
When she lashed out at me in ICU I realized that we had serious problems. Vic was not ready for Stage 5. She started kicking against death – again. Her fight is back.
It is however a difficult and delicate balance between pain-free and functional….. Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time. By Monday evening she was in so much pain that she was vomiting. She could not keep tablets down….. It took two days to get her pain under control again.
I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes. I realize now that I cannot take living away from Vic whilst she is still breathing. I have to let go. I cannot protect her against pain. I cannot protect her against death. I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration. I am active and busy. Today I joined a gym so I can train with the boys. I do the things with her sons that Vic would LOVE to do! A couple of weeks ago Vic said “You are the fun person in the family. You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1).
But we live in a civilized home. We don’t scream, shout or curse. We bury things under the carpet. We walk away from conflict so we don’t know what the other is thinking or feeling. We only see the veneer..… How terribly sad!! We have lost our ability to function properly.
So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!! PLEASE God help me!!!! I am such a control freak!!! I will endeavor to not stop her from going for a cup of coffee with one of her friends. I will just pick up the pieces afterwards.
I have to stop being selfish. I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!! Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool. Vic must make her own painful decisions. If she wants to take the boys to school who am I to stop her? Of course she must but not on 400 mg of morphine!
The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick. Very sick! I want to protect her, breathe for her, die for her. Vicky is my baby.
I have become accustomed to the ICU at the Donald Gordon Hospital. DGH has one of the best Intensive Care Units in the country. There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department. No full-time doctors or pain specialists in the Union’s ICU.
The difference is that the DGH is a private teaching Hospital and does not handle trauma patients. Only critically ill patients are admitted to the Donald Gordon ICU. The staff are all ICU specialists. Ok, I must admit that they also know Vic very, very well. For the past 7 years they kept Vic alive. Time and time again she has amazed and astounded them by surviving every conceivable Super Bug, ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs. The doctors that work in the ICU do work at the Pain Clinic. They understand the benefits of post operation Ketamine Infusions.
Over the years Vic has spent months and months in the DGH ICU…
When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her. He knows what she has been through.
This past weekend I spend a lot of time in the Union’s ICU. More time than I have ever been allowed to spend in the DGH’s ICU.
Vic, on Sunday morning, was like a wild animal caught in a trap. Her eyes were crazy. Vic’s pain levels were horrific and the ICU staff did not know how to handle it. On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”. I had to sit in the “Comfort Room”. It was so cold in there! The air-conditioning was turned down to near freezing levels. I was so cold that the bones in my body ached. At 03:00 I decided to go home. I was not allowed to stay with Vic and at that stage she was sleeping peacefully.
I was woken just after 07:00 by the ICU staff asking me to come to the hospital…
My well behaved, docile child had sworn at her nurse. She was insane with pain. Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down. I made the mistake of telling her to calm down… That was an epic mistake!!!
We eventually managed to get her pain under control and then the staff asked me to stay… I basically left ICU when Vic was discharged into the ward Monday afternoon …
Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support. In the one corner there was a young man. I would imagine that he was in his mid-thirties. “Was” is correct. He was declared brain dead yesterday morning. By now his organs may have been harvested. Maybe not. What I am sure of is that his bed is no longer occupied by his imposing body. Even in the claws of death he had an imposing physique and a presence. Yet he had no visitors. Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news. One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out… He was left to die alone.
Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family. The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals. Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.
I have a Living Will. I do not want to be kept alive artificially. I am absolutely certain about it. I cannot and will not be convinced otherwise. People should be allowed to die with some dignity. We all live to die…it is as certain as paying taxes.
What is the purpose of a life with debilitating pain??? I do not want to put my family through it – ever!! Oh I know my family will miss me. I know I am loved. I however know that we live to die. I look forward to dying. I look forward to what I have strived for all my life. Peace, no responsibilities, quiet… I know that I will go to Heaven. I have already been to hell. I live hell every day.
If I had been ill I could have handled it. I would quietly have found a way of leaving it behind. To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through.
So tonight I ask God again: PLEASE give me the pain. Allow Vicky to have some quality of life. Allow her a life. Allow her to be loved. Allow her to love unconditionally and without fear. Please let her be able to run… give her time on a beach; allow her to turn her face into the sun. PLEASE let her have a normal life, a job, independence or end this journey.
On Monday afternoon Vic was discharged from ICU to the ward. I asked the doctor to let Vic come home straight out of ICU. I can take better care of her at home than they can do in hospital. Vic is home and last night was a night out of hell. She was so ill, vomiting all night. She could not keep her medication down. No sooner did she take a sip or water or it just came spewing out. Pain control was absolutely out of the question.
Today I received a message from the Pain Clinic that the Hospice application motivation was underway. Hopefully we will have an answer by next week. If only I could give Vic meds intravenously it would be so much better.
Vic also needs physiological support/guidance in making peace with her situation. From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her. Vic needs to make peace with her journey and the trip itinerary.
But more about our family conference and Vic’s emotional battle tomorrow. It is time for her medication and I need to sleep.
This weekend I saw raw resentment towards me in my little girl’s eyes.
We checked into Hospital on Saturday morning at 08:00. Vic was seriously peeved that she did not get a private room as per the doctor’s instruction. Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language. She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.
Then she started telling us about this wonderful neurosurgeon that she works for. She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down! Vic then said that she had decided no more surgeries…wow! Did this set the neighbour off! She took the moral high-ground and started telling us that we must have faith and God will heal Vic. Vic was in hospital because we keep asking God to heal her. We should only ask once and then have faith…
She laid hands on Vic when I went downstairs for a cup of tea. I would never have allowed it!!
Please don’t misunderstand me – I have nothing against religion. Religion is important. I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child. Jared said to me today “Oumie, I don’t want to be a Christian like that …”
I do not stand in judgement of anyone. It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin? As my friend Marlene used to say “Who died that you think you became God?” If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians. If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…
People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made. They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice. Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that? Surely love is unconditional? Through thick and thin?
I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…
Jared sat at hospital with us all day Saturday. He is old enough to want to do it! That young man adores his Mommy. Jon-Daniel copes in a different way. He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend. Jon-Daniel makes Vic laugh. Jared makes Vic coffee.
Two different boys with two different ways of coping and two different ways of expressing their love. Yet united in their love and despair for their mother.
Vic ended up going into theatre just before 19:00 Saturday night…she was starving!! Poor little poppet! I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre. HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays. He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta! I must add that he too had never had an OI patient as old as Vic. So Vic had two specialists operating on her little arm.
By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.
History was made Saturday. A doctor wrote on Vic’s file “Mother of patient to stay with her”! In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”. What a bright and intelligent young man he is even if he charged double medical aid rates.
Vic was however extremely angry with me because she was sent to ICU. Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward. She cannot be given the amount of opiates that she needs, for pain control, out of ICU.
I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control. (Thank you Google for the fact sheet). When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!” She cried. I saw the resentment in her dark, sad eyes when she looked at me.
For once I did not care. I love my child and I will do anything and everything to spare her pain.
I have to find out which anaesthetic they used. The last two procedures at the Union resulted in terrible aggression in Vic. Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister. She told me exactly what she did and did not think of me. It was a horrific experience. I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.
Vic ended up spending 2.5 days in ICU. I never left her side but to go shower at home and take Jared to the urologist this morning. The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme. I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.
Well this is now behind us. We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm. That Vicky will get better and enjoy some Jurnista quality of life!
I want to blog on ICU’s and what we subject our loved ones to next. I am just too tired and emotionally drained to even attempt it today.
We are seeing a GP tomorrow morning regarding Vic’s arm. Both her arm and hand are so swollen that I am concerned that she may actually lose her arm. It has now been more than a month from the day that she fractured her arm. When I bathed her tonight I removed part of the dressing that is protecting her arm. Her arm is still black and blue and horrifically swollen. I am convinced that she has pressure sores under the cast.
Today was a truly exciting day… (Relax, I am being facetious)
We phoned the Orthopod that treated Vic in hospital. Sorry, he (Dr Y) can only see Vic next week! We then phoned her original Orthopod (Dr V) with the permission of Dr Y. Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y. We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him. “We will not even allow you into Dr’s rooms without a letter. Doctor V is too busy to phone. Get a letter if it is so urgent for you to see Doctor!”
Well!!! What the hell do you do? You cannot force a receptionist to allow you to see a doctor. Even if you force your way into the consulting rooms you cannot force a doctor to see you.
The fact that Vicky is terminal does not give any doctor permission to wash their hands off her. It is written into our Constitution that every citizen of this beautiful country has the right to medical care!! “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.
The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”
I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.
Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms! Why only tomorrow? She is too fully booked today to see us today…
Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working. Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?
I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!”
Is there hope after all? I am cautiously optimistic!
Tomorrow afternoon we see the Urologist. Strangely I am at peace about Jared. God cannot be that cruel so I trust in a positive outcome!
JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure. In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle. She coughs throughout the night and end up sitting upright to breathe easier. When I get home she is so excited that she has a coughing spell.
JD follows me where ever I go. If I step back I step on her. She sleeps in my room. JD and I have a system worked out. When I come out of the shower she is already waiting for me. When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have. I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!
I do not want JD to suffer any further. Tomorrow morning she will go to the parlour one final time. In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven. Vic and Jared want to go with her.
I am a coward. I do not have the resilience and strength to take her.
It was with fear and trepidation that I gave Vic her medication last night. Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne. My research really scared me yet strangely I was at peace.
By 24:00 Vic felt no difference and her pain was at a solid 9. By 02:00 her pain was a little easier. Vic had a fairly good night. But she is having a very good day!!! The Jurnista appears to be working! Vic rested well this morning and went out for coffee with Tracey! How absolutely amazing is that!
Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message. “Please tell Vicky that God wants me to tell her that He loves her”… She was too ill and I only told her on Tuesday. I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …
My faith has often wavered over the past ten years. Not in God but in a God of Mercy. The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means
When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless.
I am digressing. This week we were reminded that there are still angels around. A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication… The Jurnista could hasten Vic’s imminent demise but I don’t care. I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.
Many people have left wonderful caring messages on my email, comments on the blog and Facebook. Thank you! It really does mean a lot to us. Vic does not read my blog neither do her boys. But Vic has truly appreciated the contact some of her old school friends have made. As I said before, dying is a lonely business!
But today we celebrate the wonderful new drug! I thank God for sending angels along our way. I thank God for His message through Frik, when I was at the lowest low in my life!! I thank God for Dr Jaffer Hussain! I thank God for your messages of encouragement and above all I thank God for Vic’s good day! Thank you, thank you, thank you God! Even if it is only one good day!
“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”
The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.
My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.
After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.
An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…
On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.
On the 4th of May 2011 Vic was admitted to hospital for operation number 80. On the 6th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…
By the 9th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.
That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.
My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!
The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 13th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.
On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…
Why the detailed timeline in this post?
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!
If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!
Vic has lingered for 10 years… It is really hard work for her…
“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry. And just because she comes off strong, doesn’t mean there’s nothing wrong.”
My beautiful little Vic is not in a good place emotionally. She feels that she has lost almost everything that is precious to her. She has no future that is not encased in pain, loneliness and further loss. Vic does not have a job to look forward to or even a shopping excursion. There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure….
A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…
Imagine if that was all there was to your life? Imagine a life like Vic’s…
What goes through her mind? Vic does not wallow in misery all the time. She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.
I sit here tonight and I am planning tomorrow. I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armored vehicles, organize flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym… dentist appointment at 09:30 and take care of my beautiful, sick little girl.
Tomorrow morning Vic will have breakfast and then 39 tablets. The boys will kiss her goodbye and Vic will sleep again. Vic will wake up at 11:00, have coffee and tablets. We will try and get her bathed before the boys get home. Primrose will change her linen and clean her room whilst I am bathing and dressing her. Vic will have lunch and fall asleep again…exhausted from the effort of bathing. The boys may or may not find her awake when they come home. Vic will wake up at 15:00 and chat with the boys for a couple of minutes. She will have coffee and tablets. She will sleep until dinner time… Take 39 tablets….. This is her life! The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night. Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…
Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months.
Vic no longer reads, hopes or lives. Vic no longer joins us in the TV lounge or for dinner. She is too ill to get out of bed.
ger Vic very seldom cries anymore. She is stoic in her lonely journey.
As parents, we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality. We have to guide our family through this. Help the boys to get through this as unscathed as humanly possible! We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.
The most difficult thing for the family is however to tackle the problems of a very ill child rather than each other.
We love one another and support one another. We will survive this ordeal as a family. We are not perfect but who is? We err in love. But we love deeply and always and forever!
We decided that we needed a 2nd opinion on Vic’s arm. We had a 10:45 orthopod appointment with her own Orthopod! (She was treated by the trauma orthopaedic surgeon in hospital)
Well, the orthopedic appointment did not go well at all. Firstly, her original orthopaedic guy would not look at her arm. He is not the treating doctor and it is unethical. Blah, blah, blah. If I had gotten a 2nd opinion on her back Vic may have been spared 10 years of absolute hell!!!!!!!!
Eventually he looked at her knee, which is hurting like hell, and I slipped the humerus X-Rays into the other X-Rays…
We sometimes forget how every tablet Vic takes, affects something else. Vic was diagnosed with Addison’s two or three years ago…
“Addison’s disease
From Wikipedia, the free encyclopaedia
Addison’s disease (also chronic adrenal insufficiency, hypocortisolism, and hypoadrenalism) is a rare, chronic endocrine disorder in which the adrenal glands do not produce sufficient steroid hormones(glucocorticoids and often mineralocorticoids). It is characterised by a number of relatively nonspecific symptoms, such as abdominal pain and weakness, but under certain circumstances, these may progress to Addisonian crisis, a severe illness which may include very low blood pressure and coma.
The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. “
So, part of Vic’s medicinal regime is Cortisone twice per day. One of the side effects of cortisone is “osteoporosis or other changes in bone which can result in an increased chance of fractures due to brittleness or softening of the bone”. Hello??? Osteogenesis Imperfecta + Addison’s + cortisone = disaster!!!
Yesterday, we were coldly and clinically informed by the Orthopaedic Surgeon that there was no way that the bone would ever mend properly. The humerus cannot be pinned due to the danger of sepsis and the fracture is complicated by severe comminution and poor bone quality. The surgeon said that when her arm is X-rayed in 3 weeks or even in 6 weeks, the fracture will progressively look worse until eventually there will be some callus formation. Another dismal prognosis! I wonder if there will be nerve damage and whether she will ever regain full use of her arm. From the sounds of it she will only be able to come out of the cast and sling in approximately three months’ time.
Today I took Vic to the hairdresser and she had a Brazilian blow-dry treatment. Now, for those of you who are as ignorant as I was, this is a “hair straightening” process. Four hours!! Shame Vic was sleeping in the chair…poor baby! She is exhausted but it will make her life so much easier for many months ahead. Vic will not wash and leave her hair – it has to be sleek…Now with this Brazilian blow-dry thing we can wash her hair and leave it! Bliss!!
I never saw my late Mom not immaculately dressed with her hair beautifully done. No matter how ill she was, Mom went to the hairdresser three times a week. Her nails were always immaculate and Mom would get very annoyed with me if I wasn’t wearing make-up and had my hair in a ponytail. “Always the lady” was her motto. As it is Vic’s. I find it absolutely amazing that she insists on getting dressed most days. Well, certainly before the boys get home from school. She does not want the boys to see her in pyjamas. When we wash her hair it must be blow dried…She will not scrunch it or put it up in a ponytail, plait or pin…Vic’s hair has to be sleek…No matter how ill she is.
Her little body is so swollen from the cortisone. Her face looks like a little chipmunk’s! It happens from time to time. What is worrying is that Vic’s blood pressure is steadily increasing. Addison’s symptoms include low blood pressure…so why is Vic all of a sudden developing high blood pressure? And Madam will not see a doctor! What to do?
Vic does look so beautiful after her hairdressing marathon. She is passed out and I know it will take her a week to recover from this outing. But, it is well worth it!
Vic's Final Journey 