Tuesday, December 11, 2012


Lilian with me - Dec 2010

As the disease progressed over the last couple of years and I started losing my ability to do housework, we employed my formerly part-time house worker as a full time housekeeper/cook/carer.  Lilian now takes great pride in her newly acquired cooking skills and she lovingly cares for me during the week. Nowadays this includes helping me in the bathroom and getting dressed.

My 64 year old husband, Johnny, runs his business in Stellenbosch, does all the shopping and cares for me after hours and on weekends.

On occasions when Lilian is on leave or ill I've made use of a carer supplied by a nursing service.  When Lilian phoned early this morning to let me know that she’s ill, I immediately contacted them.  Unfortunately the carer I previously used was not available today, and they had to send someone who knows nothing about me, MSA, or my household.  Johnny had several appointments and couldn't wait for the substitute carer to arrive to show her the ropes. 

When she arrived the nurse introduced her to me.  I showed her my bell and told her that I would ring when I needed her.  Nothing too complicated I thought, until I needed her and rang…and rang…and rang…getting no response from her where she sat reading a magazine.  Not a good start!  After I found out that she was introduced to me by a wrong name, I started to doubt whether the nursing service knew anything about her or her abilities to care for disabled patients.

I wonder how others in similar circumstances handle situations like this?  Do I need to write a manual on “How to care for Sonja” so it can be handed to the uninitiated when they come into my home?  Are my expectations to high?   

When I was diagnosed the idea of someone caring for my most intimate needs some time in the future freaked me out.  At that stage I even disliked showering and getting dressed at the gym. 

Getting naked in front of strangers is now no longer an issue.  Who knows what I could've done if I was able to combine this new found ability with my previous ability to dance! ;)

Photo supplied by Laurette's photography


  1. I'm now on my fourth carer and yes, I wrote a brief essay on my needs and the disease. It gave us a starting point. I purposefully left the MSA parts vague and tried to refrain from words like neurodegenerative. I noticed that the carer has reread the piece a couple of times, and subsequently, has formed numerous questions relative to our relationship and the MSA. Always enjoy reading your page.

  2. Thank you for reading, commenting, and your tip on writing an essay Tommy. I most certainly don't want to be labelled as a difficult and unreasonable patient, but carers need to comply to certain standards. The agency send another carer this morning and I'm very hopeful that she'll do a much better job!

  3. Sonja,

    Thank you for writing about this topic. Sometimes our friends and loved ones think it is great because we are not alone but if no one is answering our call we might as well be.

    Hugs, Brenda

    1. Brenda, I don't know if others can ever understand the anguish when I wait here alone in my bed for a stranger, who knows nothing about my current state of disability or MSA, to come and care for me. When the agency then sends a incompetent person with no common sense, it makes matters much worse. Hugs

  4. I think a little notebook of sorts would be a great idea for those days that a new caretaker is needed. Those days may be few and far between, but it can be an awfully long 8 hours if the person is clueless.

  5. Sadly, we found it was not only the non professionals who weren't up to the task of dealing with MSA, but the agency nurses also. It was more than a little frightening because every agency would assure us their nurses has been screened and had to pass in house proficiency testing before being sent to a home. Even more sad, it wasn't an occasional nurse or an occasional agency, it was almost every single one. I would feel so guilty trusting my husband's care to people I knew weren't qualified or responsible, even with them there I wouldn't leave my husband for a second. The agencies would tell me I was "too fussy". How can you be too fussy when the person you love has MSA? Mary

  6. Thank you for your comment Mary. This month I once again had to deal with an incompetent substitute carer from an agency. I was shocked to hear that she had no training. She was scared to handle me, which resulted in me being scared to be handled by her. I am not a fussy person. It's high time for a standard to be set for carers in South Africa. Regards, Sonja


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