Life as a Carer to Merv and Melanie. Merv has Huntington's Disease. Big Bad Harry represents the things that come our way which we are unable to change but need to deal with. Some comedy and thought provoking comments and ideas.
Tuesday, 13 May 2014
Hit and Run
Monday, 12 May 2014
Wheelchair Headache
Merv's OT rang and asked how the recent wheelchair on loan is going? I missed the call and listened to the message. I had pushed the chair into a corner of the bedroom last week and simply forgot about it. I am glad I missed her call! Today I took the chair apart and put it in the boot. It fits well. Both the large wheels can be removed and the handlebars have a release button and can be pulled down making it easier to fit snugly in the boot. Too easy. Merv sat in the chair after we arrived at the local indoor markets. Our first stop was one of the many cafes and the wheelchair's footrests easily pulled back to allow comfortable access to the table. After an hour in the chair we returned to the car and within a few minutes the chair was pulled apart and in the boot of the car. Then came the bad news. The chair is wider than the one we borrowed last year and does not fit through our bathroom door! Even without the self propelling rims the chair resisted all attempts to enter the bathroom. Though the turning circle is better than the last chair we tried. Can we just ask for a chair not so wide without causing Merv discomfort?
| Comparing wheelchairs at home |
Sunday, 11 May 2014
Mother's Day
| Mum and her three daughters today |
Saturday, 10 May 2014
Not Another Holiday
Thoughts crowd my mind. I decide I need to do something about it. I send an email to the travel director. I begin to form a plan in my head, there is much to work out. It is essential to make it work and I start crunching the figures, ringing respite centres and sorting out the dates. It all works except for one. I am unable to book Merv into his regular respite places. It is the same week as many carer retreats happening in October. I don't begrudge anyone respite and I understand and have experienced many carer retreats over the last four years, they are always good; sometimes confronting! What am I doing? I had suddenly decided I wanted to complete the Cape to Cape track this year instead of next year. I have completed two thirds of the track with only the remaining one third to go. I emailed the director of the tours and she admitted stage three is booked for this October but probably wont go ahead next year. I don't particularly want to complete the final leg by myself. Today I took the bull by the horns! I have put my name down for the final leg of the track in October, I have the funds available. I don't have respite for Merv and I will be away for three weeks altogether in October. There will only be nine days between my already booked respite for a fortnight and my Cape to Cape walk. I am feeling rather selfish. Life is full of issues which keep us awake at night and disgruntled during the day. Hopefully I will find a way to justify it!
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| Cape to Cape Walk stage 2 |
Friday, 9 May 2014
Money Pinching
| Ellie |
Thursday, 8 May 2014
Wheelchair Funding
Since August we have been pursuing Merv's
wheelchair funding. The only hitch has
been the decision of which wheelchair to purchase! The first wheelchair we tried was a Glide, the
Malvern Star of wheelchairs.
Unfortunately the cost of it was frowned upon and the OT returned to us
to find us a cheaper version. The
cheaper version was brought to our door by the OT and a another wheelchair
rep. We tried it at home and disputed its
effectiveness. Merv said it was not a
comfortable chair and I was not happy with the too large turning circle. There is ten centimetres difference in the
length of the two chairs we are comparing. I am not happy with this
difference. We meet again with the OT
and yet another wheelchair rep. We are
happier with the chair he presents to us and we have the use of it at home for
one week. We have yet to make an
informed choice. Mel's health is my only
priority today. She is improving each day.
Wednesday, 7 May 2014
Mel Comes Home
Mel is asleep in her room. Messages have been sent to family and friends. We are all glad she is home. Her infection is much better but we don't why and how it happened. There have been a few projected suggestions from medical staff and others. One doctor suggested the infection may be due to her diabetes 2. It is a possibility, I would like to explore this a little further but not today. I need to rest and just do all the things that need doing. Mel has started her home oral antibiotics. Once again I am Mum, nurse, and doctor. Merv as usual is concerned about his daughter and he reached out and held my hand this afternoon. He was just letting me know he cares and wants me to rest now.
I am planning a little fun tomorrow and a trip to McCafe for drinks and low fat treats. Mel's hospital visit wasn't life threatening or life changing but it still impacts on an otherwise run of the mill week.
I am planning a little fun tomorrow and a trip to McCafe for drinks and low fat treats. Mel's hospital visit wasn't life threatening or life changing but it still impacts on an otherwise run of the mill week.
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