2014 Review

I was supposed to do this entry to coincidence with one year in our new house. But as you can see it is 2 months late.

On the 7th of January we had to have Leoni our dog put down. She broke her right back leg.

Now to try and continue where I ended last blog entry.

My helper came back to work in September. To be honest since then it has been a living nightmare. She constantly forgets, doesn’t concentrate. Is more focused on home time and money. I am just a means to a financial end. If the one that covered for her when she was pregnant wasn’t related to her, she’d been fired already. So yes I am looking for a replacement with the much needed empathy and compassion required to be a care giver. The good carer helps on the weekends. We’d love to have her full time, but she works elsewhere in the week and the other issue of being related to current helper.

As I mentioned in the previous entry winter wasn’t going to be fun. Well it was not, I was cold a lot even with my aircon. The problem was largely caused by the passage to the bathroom off my room. Towards the end of winter we finally solved the problem by putting a curtain over the entrance to the passage.

I continue to play Command & Conquer Tiberium Alliances.

I have been working on a new skin for a forum of which I am a member. It is a IPB version 2 forum. So it’s a lot of work to design a responsive skin since most of the html is 10 years old.

Some people have suggested to me that I consider writing about my life. I have been thinking about how I would do that, considering it will have to be dictated and then someone would have to transcribe it.

With all the power cuts towards the end of last year and at the start of this year. Friends gave me a ups which they weren’t using. It is able to run my pc for 8 hours. As well as protecting my pc from power spikes. It has been a tremendous help.

Lastly I should add, my physical condition has worsened in the last year. Needing full-time help at night isn’t far off. I sleep on my back and left side, turning onto my left side has become increasingly difficult. So we’re currently thinking about how a night time caregiver might work and how that would affect the help I need in the daytime. We had a trial run on Easter Saturday night, it went well. But the usual problems of who and how to pay are probably going to block doing anything about this.

First four months in Howick

It was a very first difficult month, my room is really small. Making it difficult to find a suitable position for the wheelchair when helping me. I got a new 3/4 bed on Tuesday (13 May), my double bed just took up too much space.

Also the basin is far too low for me, which means I need more help.

Not to mention having to shower now, since there is no bath. It takes hours for my body temperature to normalise after showering.

I finally got Adsl on 19 March. So I had to use 3G for six weeks.  The connection was fast usually in 10-14Mb range, but I only had 20Gb for the month.

And to top it off, we waited until early May for the buyer of our house to pay transfer! 13 weeks after we moved. The first we knew about a problem with the transfer was 4 February, 4 days after we moved! So we have to ask the question, why did the lawyers doing the transfer wait till then to inform us. Considering most people pay transfer up to 6 weeks before occupation date. We’re still waiting for the buyer to pay the occupational rent owed.

For the first two weeks our dog kept my mom awake at night.

Frustratingly, as we suspected all along, it was confirmed in mid April that my helper is pregnant, despite all the denials! Which as most of you will probably realise is a major problem for us. My helper brought someone else and spent the last two weeks of April attempting to train her. Now that she’s on maternity leave, we saw how poor a attempt she made. My mom and I are having to slowly train her. Which is a frustrating mentally draining, repetitive task. By the third week she was virtually trained. The replacement has done a far better job and has shown how badly my helper was doing the job! We heard today (1 June) my helper had a baby girl yesterday.

Winter isn’t going to be much fun for me, even with an aircon. My room is a thoroughfare and my door is left open far too often. Even now in early May the temperature change has been difficult.

The move has helped the stress levels in some areas. But the additional things I need help with (mentioned above), have increased the strain on my mom.

2013 News

It’s been a long time since I posted. Since I made the choice as far as possible not to focus on the negative aspects in my circumstances.

Johan, my stepfather died in March. As a result of this and several other factors my mom has sold our house. We will be moving to Amberfield (Howick, KZN) in the new year. The unit is much smaller so we’re downsizing a lot, selling a lot of stuff, mostly for way less than they’re worth. Moving to Amberfield isn’t my ideal choice, but with my care needs, I have no other option.

Late last year I was sponsored a new wheelchair and Roho cushion by the Muscular Dystrophy Foundation. Unfortunately, I couldn’t adjust to the chair. Recently someone from CE Mobility came to see me, and after evaluating me has made suggestions for customizing the chair, which should hopefully make it more suitable.

This year a pastor from my local church has been doing bible study with me. It’s been a tremendous help since I went many years without meaningful group study.

One of the biggest issues for me with moving will be, what internet connection can I get in Howick? Amberfield doesn’t allow residents to have lines laid for Adsl. At present the options don’t look very good, slow, over priced, low usage, wireless options. I am still hoping a solution can be found. But whatever I’m able to get, I’ll probably need help paying for it.

I have done a few online courses in the last year. With the two I enjoyed the most being, Introduction to Systematic Program Design – Part 1 on Coursera Introduction to systematic program design & Metadata: Organizing and Discovering Information.

As I’ve mentioned in other posts in the past, I’m trying to bring my lecture notes from KMBC into the 21st century (font, formatting and style wise). But it is a larger job than I initially realised, it’s hundreds of lectures, far too many to do manually. So I’m slowly working on an automated system, it’s taking longer than I hoped. I’ll have to do a separate post on the technical problems I have to solve to successfully complete this.

I’ve spent a lot of time playing Command & Conquer: Tiberium Alliances this year.

And as those who visit me know, I’ve watched a lot of tv episodes this year.

Latest News January-April 2012

I last posted in September, as I usually say not much has happened since then. I don’t like to focus on the negative, but it is hard not to when I see the strain my mom is under every day. My mom and I have been devising ways to try and lessen her work load. She has shown a friend how to prepare my lunch, which has enabled her to go out and leave me on my own for longer periods.

Frustratingly, there are people, who out of ignorance or whatever you want to call it, think that we exaggerate how difficult it is to provide full-time care for a frail, physically disabled person. Somehow we need to find volunteers who are able and willing to assist with my late afternoon and evening routine. It is during this period of the day that my mom takes the most strain, sometimes having to work until 10 pm, which isn’t easy.

However, we have discovered that even when we have a full-time person assisting there’s no guarantee they’ll stay for more than a few months, the consequence of which is that we have to train up a new person, which is costly and very taxing on my mom. Our situation simply has to change, but as to exactly how we are going to plot the way forward is unclear. We don’t have sufficient funds for a full-time care giver and we still need to find the right person. If the situation doesn’t improve significantly, my mom will eventually crack under the constant strain of having to take care of my every need.

After reading this you should have a clear picture in you minds of what we have to endure on a daily basis and an idea of some people’s interpretations of our situation. We are very grateful to all of you who are helping financially and who visit regularly.

This will be my last post focusing on the negative in my situation (those that visit me will see the situation as it is and for those that can’t or don’t visit me, not much is likely to change). From now on I will try and focus on the positive and on news and events that interest me.

Below is list of a couple of things I have done in the last few months.

  • I have (as always) tried to learn and discover new things in the field of web design.
  • I have done some x264 video encoding.
  • I have been restyling and formatting my notes from TAP (now called KMBC). I’ll post them online when I’m finished.
  • While the weather has been warm and I have the energy, I have been playing computer games, in particular Mass Effect 3.

Lastly, I wish there was a way to properly interact with the computer, beyond typing and voice dictation. I can only type for a short while when I use dictation. After about an hour or so, my vocal cords get tired and accuracy consequently drops.

May – September news 2011

The only news I have for May is, is sad news, on 23 May we had to have our Yorkshire terrier, Bobby put to sleep. He was at least 12 years old (we don’t know how old he was when we got him), he was deaf and blind, he had a lot of pain in the joints in his back legs.

Not much happened in June, other than the start of winter, which as some of you will know, I have a lot less energy in winter.

But, on 26 June at around 3 PM, Johan my step-father had a stroke and seizure, he was taken to hospital by ambulance. He spent four days in ICU, he was then moved to a normal ward for another four days. He has recovered somewhat, but it appears he has atrial fibrillation, so he is having to take it easy now.

As in June, there isn’t much news for July. I continued to work on the website that I’ve been working on for most of the year, albeit at a slower pace due to the colder weather. The other thing I remember in July is two years since my terrible hospital experience.

In August we had some of the coldest days of the year, 10°C or less. Thankfully in the last two weeks it has warmed up, as a result I have probably done more work in these two weeks than in the last 2 1/2 months. Some of the work I did, was on a new template, logo and colour scheme for my blog(again something that I have been working on all year).

In September it was warmer again, but we did have some cold days. On the third it was my 35th birthday, I had a few friends around for tea. I continued to work on my new blog theme, as well a website I’m responsible for maintaining.

To end off, not much has changed with regard to my caregiving situation, my mom is still under enormous strain. Financially things have improved somewhat, but we are still around 50% short each month. Physically and emotionally, I can see the strain increasing virtually every week.