28th October 2022

I dreamt about him last night, the first in a very long time. Maybe because this is the month of his death and the month of his burial. It left me with a sad feeling today, even though it is much better.  

This is actually the first year I felt normal in October. I didn't cry, I didn't miss him, didn't even remember the date. Michel reminded me although I would have seen it on my calendar. It is a sort of milestone for me as he is not present in my head all the time. When they say 'time heals all' it is correct because nothing else helps.

Talking about it just made me cry and if I talk about all the little things I start feeling sad. 

he doesn't pervade every part of me like it used to. There are days when I don't think about him at all and those are getting more. I am content with that.

29th October  I will have to revise that thought again as it seems like I can't watch movies with sick people in them. I watched From Scratch, a series my daughter said I must watch. I should have missed it totally. It just brings it all back, the suffering, the thinking, the losing. everything. So you think you're ok but you're not. Takes you back to the pain you carry in your stomach every day. When someone you love gets sick you get sick as well. Trying to be strong, trying not to break down and sob your heart out. I think my brain could only take so much trauma and I've used it all. I see I have only watched half of this series but this is where I am stopping. When she went down onto the floor and started sobbing, I couldn't because I did that. Stuffed a towel in my mouth so I couldn't be heard. Palliative care is not easy and you have to function as well.

I cannot take this manufactured pain. I don't pay to be traumatized. I think I need some comedy because this is seriously not fun.

NOTES YOU NEVER SAW - ALS

MEDICATION MORNING

Green Vibrance 1 scoop in a half glass water Lizro 20mg x 1 (Blood Pressure)
Lexamil 10mg (Anti Depressant)
Magnesium Bi glycinate 1000mg
Nac x 1 (Chest seems to help)

MORPHINE 5ml or 1 teaspoon when requested. No more than 4 teaspoons a day

MEDICATION EVENING 

Alzam 0.5mg  
Trepilene 10mg
Pax 10mg x 1 or 1/2
Magnesium Glycenate 1000mg
Voltaren x 1 When requested 
Pepcix x 1 Chewable
Lacson 25ml or 1 tablespoon Varied depending on bowel

SHAKE at least once per day 

2 x raw eggs
1 x banana
6 spoons ensure or Whey protein (top of the range)
4 x ice blocks
1/2 cup water
1/4 cup Almond Milk
Blend and serve

and so the Morphine has started, he gave in and requested it. It is the beginning of the end. I have stopped all the other medication and he only gets what I have listed. I now know that nothing can help. I used to think I could find something to stop it but of course, why would life be that simple. Everyone goes through this phase and the doctors expect it. How can they tell you there is no hope. 
They say eat healthily. Do what you normally do.

What they don't tell you...

6th July 2018

9.00 - Woken up by Let He was in full choking mode. The meat soup had started him coughing last night but when I went to bed at 3.00 am he was fine. The meat had strands in it and obviously irritated his throat. So that was out unless strained.
I went straight to him and he was full of mucous and totally out of control.
I sat down and spoke to him gently as I did and tried to explain what was happening. He argued with me and started shouting. I got cross with him and told him as long as he was ill, he would listen to me. There could only be one person in charge. As I was the person with the nursing experience it was me.

He kept quiet and I explained to him that the coughing generated more mucous. I told him that there was nothing wrong with his lungs. The more we cough when irritated, the more irritation is generated. I explained that it would be a day of sedation. I knew it was going to be a struggle to get him calm. Let said that he had refused breakfast. I would try to get him to eat but in this situation, it was hopeless as everything scared him. I gave him 0.5mg of Alzam and 1 teaspoon of Morphine. After the morphine, he always wanted a sip of water. 

I spent the day sitting him up and down, doing frappage or clapping (https://www.myshepherdconnection.org/respiratory/postural-drainage-clapping) and trying to get the mucus out. He never lay flat as he struggled to breathe so he was in the sitting position, leaning forward. He would then spit into a cup and I would wipe his mouth. Only once he had relaxed would the whole cycle stop. Obviously stopping them from starting is the first objective. It was getting difficult for him to cough like he used to. This meant that his chest muscles were weakening. He preferred to move to the wheelchair as he had more leverage. It is also better to move him as this helps. I got him fresh coke which was the one thing that seemed to help. We went like this through the day until he settled and could watch something with some interest. 
Showering or shave or anything was out.

14.30 - 1/2 Alzam, 1 x teaspoon morphine.
17.00 - Is all meds except the sleep ones. 
19.00 - managed a little shake and some jelly. 
22.00 - 1/2 alzam
1.30 - 1 teaspoon morphine, pax 1
toilet run and make ready for bed. 
The lazy boy tilted back but not too far, pillows on either side, one at the small of his back, special socks on and soft slippers, Pillow under the knees. Chair at the bottom of the lazy boy so that the heating pad can be placed. Two Blankets on him and one around his back and neck. 
Cup for spitting in and pieces of roll a towel broken off into single pieces, 1 glass water and a small amount of coke,1 bottle of coke small, as it had to be fizzy.  Remote near, glasses would be put where he could find it as was cellphone and remote.
He eventually fell asleep but I stayed up as I knew he could wake up and choke. I sat and watched TV and played games on my computer. I like watching over him when he sleeps. I know soon he will not be here.
6.00 - No movement so went to bed. Wrote up the Diary so that everyone knew what to do.

AFTER ALS

30.12.2018
Another night and still awake. In spite of taking all the usual medication, it's 1.36 in the morning. Gossip Girl has become an addiction and it's all I watch. At least it's a break from Luther who is at the opposite end of the pole. Light-hearted playing and darkness.  I have taken a sleeping tablet and that should knock me out.
Yesterday the sadness came back and as always it's preceded by euphoria. A genuine feeling of happiness buoyed by laughter. I never know when the tears will start again. Just a thought, a piece of music, or a movie can switch on my internal tap of water. I should fall asleep soon.
Tomorrow is another day.

About 2 years ago my son and I went up to century city shopping center to get meds or something. My husband was at work like he usually was.  My brother was at home with all the animals, asleep in his room like he usually was.  We took our time and wandered around for a while.  At about 7.30pm we decided to go home. We chatted while driving and it was nice as we didn't get to spend too much time with each other. My work his work and so on.  We saw smoke when we were near home and wound up our windows as usual.  The airbase was continually being set alight by homeless people wandering around.
As we came down the road we could see thick smoke and I said to my son that someone's house had caught fire. We drove along quiet but content, however as we turned the corner to the house contentment changed to horror as we saw that it was our house burning. TBC

19.02.2019 - Tomorrow would have been my 26th wedding anniversary and today I dread tomorrow. It took me about 20 years to start remembering our anniversary. It became a game we played while he was here...who could remember and guilt the other. We were odd like that. During the day whoever remembered had to judge the right time, before the other one remembered, and send a text or phone and say "Happy Anniversary" and then the other would say "Shit I thought about it during the week or the day before and then forgot"
Like the one year when everyone forgot my birthday.
I walked to the front door and shouted "Well happy fucking birthday to me!!" and left for work. I laughed all the way. 

I miss him more than I ever thought I would. We get used to a person, take it for granted that they will always be with you. Grief, so much written and yet nothing really helps or prepares you. 'I've grown accustomed to his face, familiar with his ways' 
I never really considered death or loss, it was never an issue.  It was some time when we were old, old? No particular age really. I just didn't think about it other than in relation to my parents and aunts and uncles. That was normal. You get old, you get sick, you die. Yes, we started attending more funerals but not of our generation. Those things happened to other people. What made it worse today was maybe the Whats App messages. Reading them made him seem alive. Wanting to go back to that time. I want to go back to that time when he was sick and we were together. 

The best of times and the worst of times. I would give a lot to just have those last few minutes again. I relive them but they are not complete because you should have said this or that but you were aware and not aware, do I even remember the exact time he stopped breathing. We should have said more that morning, I wish I had said I love you, I don't want you to go but we were wrapped up in our own misery, our own pain. I had fallen asleep on the sofa next to him. I remember jumping up as my son wheeled him back from the toilet. All I saw was the pain on his face. The pain that he was still alive. I put him in his chair and I knew I would not be able to clean or brush teeth. It would be a day where I would just manage him. Try and keep him asleep. He had given up the day before for the first time since he was diagnosed, he refused food. I didn't argue with him as we had discussed this. I knew what he wanted so there had to be acceptance. His quality of life was what was important. Not mine. I didn't have the disease, I wasn't suffering physically. Mentally yes but I was not the one who was dying. Only his wishes counted and I knew I wouldn't be able to keep him here, as much as I wanted to. I would happily have looked after his body and fed him and talked to him. But it's not what he wanted, he didn't want to be dependent on me. He didn't want to be fed or as he said "His ass wiped" If he couldn't communicate or do anything he said, what was the use.

Its been 4 months now and he is never out of my thoughts. He is the first thing I think about when I wake up and the last thing I think about when I go to sleep. Maybe I must take his photo off my phone. I get a shock every time I see it, its as if he is just at work. For a second I feel like he is going to come home. He looks so alive and I can smell and hear and feel him. He is all I think about and I don't know how to stop. Well, in theory, I do know but I suppose I am not ready. I don't leave the house much. Some days I feel anxious and some days I feel content. Some days I cry and some days I sleep. I suppose if I worked it would be better but the thought of it makes me feel ill. The basic premise is that my brain cannot take any more feelings, information, thinking, pressure. It doesn't leave room for anyone else or anything other than him. Having to do something makes me feel nauseous. I don't want to have to talk, or go out or be with people. 

My brain has shut down. Some days I want something more but as soon as I try and do anything the feeling goes away and is replaced with loathing of the task. People want me to come out for lunch or dinner but I don't want to go anywhere. I just want to be left alone. Obviously, I know it's not healthy and everyone has an opinion. Until mine changes, there is nothing that will help. Why should I? Am I not allowed to miss him, am I not allowed to be tired, be away from everyone, be alone with my own thoughts. Why do they call it a period of mourning if I am not allowed to mourn? He would say it's fine. He would give me permission. He would say do whatever you feel.

My daughter always asks what I have done when she comes home and she is impatient with me. I don't really care and I just ignore her. I cook if I feel like it. Today I took the meat out but now the thought of preparing and cooking and doing the same thing leaves me with a knot in my stomach. I know I won't do it now. I will just do something easy or nothing at all.
They are no longer young and yes I am their mother but I am not their partner or their carer. They are adults. The guilt must stop.

WHATS APP
04/27 ME : Do one for the boys
04/27 ME : And throw olives on mine as well
05/03 Tony: 💋💋💋💋💋💋💋💋🌞🌞
05/03 Tony: ❤❤❤❤❤❤🐬🐬🐬
05/03 ME : 💋💋💋💋😘😘😘
05/06 ME: Don’t think I missed the secure part.
05/06 ME: It’s taken a while but I finally understand the meaning of love.
05/06 Tony : ❤❤❤❤
05/06 ME: Lemons
05/06 Tony: 🍋🍋🍋

24.02.19
My eldest brother's birthday today. I sent him a message of course. The last couple of days have been rough. I wish that I could forget about him but every time I see his photo I am struck by his sheer vitality and the thought that he can't be dead. I often used to think about whether it was better knowing he was going to die or better if he had died unexpectedly...in a car crash or something. Was it better if he went without saying goodbye? When I think about it like now then I get tears in my eyes. I now know what my best friend meant when she said she feels alone. It's not something anyone who hasn't lost something knows. No one can help you, your kids have a different pain. They think they know but they don't really. I hurt all the time. All the time. Some days I think its better but it isn't really. I shouldn't but I do. I am the strong one. The one who always takes control. The one in charge. the person that his life revolved around. I was the loud one, the black and white & nothing in between. I knew where I was going, we both did. We had work and the kids and the house and the animals and us somewhere in the middle or down at the end. What happened to us? When did we become less important? Life is what happened to us and we were not looking.

The main problem is that I fell in love with him again before he died. He made me love him. He needed me for the first time in his life and that made me love him even more. When his muscles started dying I would smile at him and walk away down the passage. I would cry and I would grab a towel and stuff it over my face so he didn't hear me. My son picked me up one day and dragged me into the office because I was outside his door. Just as in life I wanted a happy and peaceful home my husband wanted a happy and peaceful death. No one was allowed to cry around him. So I did it alone or when he was sleeping and I watched him. But yes I fell in love with him again and it hurts so very much. It is frightening how much I need him to put his arms around me and hold me and make everything ok. I don't need a man, I want him, the man I fell in love with. The man I married. The person I thought I knew for 27 years. Subconsciously we both knew it would be till death us do part. It was my second marriage so a third was out of the question. Losing 2 husbands is bad enough but a third as I often told him,  would be sheer negligence. I also often told him that I would never divorce him....as that would make him far too happy.  Sometimes I would think about what we would do when we were older and stuck together. Would we irritate each other, would he talk too much. But it was great, we two, just a pity it had to end.

03.07.2019
It would have been your 58th birthday today but of course, you are not here. Deborah said we were going out to eat and we would order a bottle of wine and toast your memory. So we went to a wine farm. You would have loved it. The food was superb and the wine was divine. You probably would have tried to organise a hunt there. The view was amazing and it was quiet. The wine was excellent a fitting bottle to drink to you. We drank it all and you know I don't drink. We passed the day chatting, sharing stories and remembering. All I seem to do is remember when I want to forget. The memories are what kill me. At least I got through the day and just wished you were there mentioning gooseberries and several notes and I would say "This eye of newt is particularly pleasing" 

10.10.2019
A year today since you died. I wish I could say that it's all sunshine and roses....but it's not. 
I fight with the kids all the time and we all just live in our own bubbles. The joy has left our home and I don't know how to get it back. Nothing is right even Kuma is miserable. I took down the black ribbons that marked your death and now all that is left is for me to sprinkle your ashes. It will be done on the 16th, the day of your cremation. They will be where you want them to be. I have done everything so far the way you wanted. I told you I would be with you and I would do whatever was necessary. I kept you out of hospital like I promised.  This process will continue its traditional path according to me. Deborah came over and brought all the tools. Cake, chicken that terrine you like and nice crusty loaves. We sat and told stories and laughed at Michel. She is so funny and can keep everything together. She misses you terribly...like everyone. Alex just carries on, I don't know what he feels anymore. I don't know if I ever did. Everyone is so angry.  I just keep wondering when you will leave my body. I dreamt about you last night....first time ever. I suppose I am saying goodbye. I can't live like this anymore. I hope that I will find a way to fix things. Michel also dreamt about you. You were both at a hunt and she was on Cecil. You were standing at the end of a path and there were hunters on either side. Cecil walked past everyone to where you were and sniffed your face. He snickered and he said goodbye. Maybe all of our sub-conscience minds are telling us to say goodbye. We cannot live in this kind of pain forever. It is killing us. Another day has gone and I thought I was feeling better but I feel shit again. I spoke to your mother and Michel took her an orchid. It seems as though she has lost the plot a bit but we will get her on track again. I took your picture out of my room, off my phone and computer. I can't stare at your face every day, it makes things worse. Why you couldn't have died in a car accident I really don't know. It would have been so much easier mentally. I read the diary again and the funny thing is that I mostly remember the laughter. The diary is sad. Michel said that this year she wants Christmas eve. She feels that it will be better. Last year she felt as if she was failing you but I just couldn't do it. Maybe this year I will feel better and we will have the usual suspects over. It's a pity you didn't get to meet Collin. I think you would have liked him a lot. He is quiet but strong, he has a great sense of humor. Fits in with ours. I really like him. He is good for Michel, I told him. He and Marthinus get on very well, he kills himself laughing at him.

HELP FOR THE YOUNGER JOB SEEKER

Fin24: How do graduates get jobs in this tough business environment?

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I would recommend that graduates look out for those programmes that facilitate pathways into employment, such as Tshepo 1 million, or Harambee’s youth employment accelerator, which are just two of the many initiatives that assist graduates to transition into the workplace.' BUSA CEO

1.http://www.gauteng.gov.za/Tshepo1m/Pages/index.html   TSHEPO REGISTER click
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2.   http://harambee.livedigital.co.za/    HARAMBEE CLICK

 

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DINNER AT CHEYNE'S HOUTBAY

FRUIT SALAD

We were recently invited to have dinner at Cheyne's in Hout Bay by some good friends.
 It's not a place I would normally have chosen,  I am not into taster type menus. 
I generally like a good plate of food. 
I have generous curves that attest to that.





I can pass on dessert but food...good food...by that I mean stew and meat, rice and potatoes, curry, pasta...Actually anything home cooked is my weakness. As Stan Freeberg used to say "Food is gooood"

We generally catch up with them at least once a month and they always choose an excellent restaurant. They did not fail this time either. I don't leave my house for many people but I do for them.



The Drive is very scenic and you pass by Rhodes Memorial, Newlands Forest and Kirstenbosch. 

















Table Mountain is also very close and in winter you can see the waterfalls. When we were young we stayed in Newlands in two different block of flats. We used to count how many we could see from the boys room, it faced Table Mountain. We would do this when it was raining hard and when we were bored.... before we got thrown out, Or my father was politely asked to remove us. 4 kids in a 2 bed-roomed flat was not an ideal situation. Not that my father saw anything wrong with it.

To say that Cheyne's was quirky is an under statement. The food is sublime worth the drive from where we stay, the service horrendous, the wine list....sparse to say the least. The food makes up for all of that plus you can sit outside at a little table.


Eating outside would have been perfection but our hostess is very slight, feels the cold.

The prices are not low so save up if you are going there. Have plenty of patience and take your own wine...that and a few friends should make the experience interesting.

I loved every mouthful and I could have eaten twice what I did, everything was lovely and I enjoyed new and interesting things for me. Probably the closest I have come to Asian, fusion, foams, froths and drops.
Plenty of vegetarian options.

I am quite happy to go back there time and time again.

The dessert is also worth a second look...
I had the white chocolate mousse.
Hubby had a fruit salad.

FRUIT SALAD

It was truly as always a wonderful dinner with excellent company and excellent food.

WHITE CHOCOLATE MOUSSE

CHOCOLATE

OUTSIDE

MENU Subject to change                              301217

Is this the kind of company you want to work for - 07/12/2016

Guess we know this, but nice to know the rest of the World also knows. 

I saw on TV that Zuma is the only president in history that was elected whilst he was under investigation for fraud and corruption, he still got in!!

Imagine working for a company that has about 500+ employees and has the following statistics. Is it the kind of company you want to work for?? Or is it the kind of company to avoid at all costs. You get the feeling that you might not get your salary at the end of he month never mind collecting your provident fund...

29 employees have been accused of spousal abuse

7 have been arrested for fraud

19 have been accused of writing bad cheques

117 have directly or indirectly bankrupted at least 2 businesses

3 have done time for assault

71 cannot get a credit card due to bad credit

14 have been arrested on drug-related charges,

8 have been arrested for shoplifting

21 are currently defendants in lawsuits

84 have been arrested for drunk driving in the last year

373 in total or approximately 70%...

Can you guess which organization this is?

It's the 535 members of the SOUTH AFRICAN PARLIAMENT!

This is the same organisation that promulgates hundreds of new laws every year, to keep the rest of us in check and make sure we are not doing the same thing.....Scary!!

Going to UNIVERSITY⁉️⁉️

Students need to understand a couple of things. Firstly during apartheid it was not free. You paid. If you could not afford it you took out a student loan. That is what my brother did. He had to pay back 40 or  50 thousand 30 years ago, once he got a job. 

Admission to university was a privilege earned. 

You submitted your marks and your portfolio and the university decided if you were good enough to admit. 

My brothers marks were average. He obviously got matriculation exemption but he was admitted because of his portfolio. Which is drawings, art work,etc.

He then proceeded to work his ass off for 7 years while trying to dodge conscription. He cycled to UCT from Muizenberg. All I can remember is him at times smelling of sweat. Waking him up when I went to bed. Having to pull the duvet off him to get him up or spraying water on him. From a distance of course. That is the level of commitment that is needed. University is a privilege not a right. You have to earn that place by studying hard at school and getting top marks or be particularly gifted at something. I was gifted at nothing. My marks were average and we didn't have money. Getting a loan was not warranted. I wouldn't have gotten one as my marks were not good enough. I went to nurse. Students are going to university with low marks and a poor work ethic doing degrees that are not needed or wanted by the country. They then get poor marks for the degree. They then enter the workforce expecting to get a job. Uhhh no. We have schools that are now going to allow a 30% pass mark. You have maths that allows you to pass while working out the square meterage of tiling a floor. You were fairly assured a place at university if you were top in pure maths and science. Home economics and business didn't cut it. On the other side you get students who are not good at studying but more hands on. Go and look for a trade. Have you checked what a plumber or electrician costs?? A good tiler is worth his weight in gold. Computers are another area that is always growing along with cloud apps. 

Schools need to raise the standard of education across the board as all they have been forced to do is dumb the system down. So the system suits the students with the poorest marks. This ensures that the students that come out of school are already at a disadvantage. University is for the best of the best. If you have to work twice as hard at school and look for extra work and reading, then that's what you do. Your education and your habits start at junior school and parents need to reinforce good working habits in the student. The teachers in some schools are a disgrace and there is a lack of good ethics. Schools need inspectors and training facilities need to up their standards drastically for students to succeed. 

Parents and or students need to look at what jobs are the most saught after and direct their efforts towards that job from young. If you have the subjects you can go in any direction. Life is about work and work only comes with good efforts at school. 

Every prize giving I saw the same students getting the maths and science prizes. The arts and music prizes. The badges and the trophies. The top sports people were envariably head boy or head girl. You achieve when you are an all rounder. 

If you think you can run around with your friends doing shit after school or go out every weekend to clubs and bars.. Then don't even bother thinking about university. You might get there but you won't make it and if you do, you will just be average. Business looks at the top students at schools. They mark them for hire then already. Some will pay university fees, give bursaries. Those students are ready for success and deserve it. They get it as well. Don't bother telling me that these students are mostly white. They aren't. We see it when the top 20 come out each year and I saw it at my sons school. It was 2 out of 20. 

Half the students drop out of university in the first year and then another lot after second. It takes commitment and everything you have. 

Success is up to you. You need to decide how you want your life to be. 

  NATIONAL / EDUCATIONSA students not prepared for tertiary education, says study

Students are ill prepared for university

07 AUGUST 2017 - 17:09 SUTHENTIRA GOVENDER

Picture: THINKSTOCK

Not being happy with your study choice and failing schools standards are some of the reasons South African students have given for feeling unprepared for tertiary education, according to a new study

This revelation is contained in the latest PPS Student Confidence Index survey conducted among nearly 2‚500 students in fourth year and above‚ pursuing qualifications in engineering‚ medicine‚ law or accounting.

According to the survey‚ less than half those surveyed felt prepared for the transition from school to higher education institutions. This represents an 8% decline from 2016‚ and marks the first time in three years — since the survey was started — that the percentage has dropped below 50%.

Motshabi Nomvete‚ PPS spokeperson, believes the implications "of this lack of preparedness is no doubt contributing to the fact that 47.9% of university students do not complete their degrees as determined in the latest [2015] report by the Department of Higher Education".

She said there needs to be more engagement by the corporate sector and professional bodies with government on school curriculums to ensure the divide between secondary and tertiary education levels is reduced.

Prof Labby Ramrathan‚ based at the University of KwaZulu-Natal’s school of education‚ said the school-to-university transition "is a complex phenomenon that has many facets". "The emotional facet of being prepared or not for this transition cannot be used as any substantive argument for the high rate of dropout from universities."

Ramrathan said the drop in percentage of students being ready for tertiary education "is related to the confidence in being able to access their study programme of choice and this is, I believe‚ what may have resulted in their lower levels of confidence in transition from school to university".

"There are a number of studies that have pointed to‚ among other [things]‚ being admitted to programmes that were not the student’s first choice as a reason for high levels of student dropout. Students have the potential to succeed‚ but there are several factors, including institutional‚ personal and academic‚ that contribute to the high rate of student dropout‚" added Ramrathan.

Another education expert‚ Prof Wayne Hugo‚ said: "At the heart of it lies the following problem: school standards are struggling to keep up to scratch for university level study."

"Universities accept students who they know are not university-ready because they know the school system is struggling and so they put in all sorts of foundation and assistance programmes that help the student," he said. "By the time it comes to actually graduate‚ the openness and support has come to an end and the student must display full university standards. By then‚ some of our students have caught up ... but those who have not experience a rude awakening."

Hugo added that the Fees Must Fall campaign had "a terrible physical and psychological toll on students and lecturers alike‚ resulting in an increased divide and less energy and commitment".