|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