She is 31 years old, a mother to 3 year old twin girls and a 7 year old son, and a wife. Her husband John suffered a traumatic brain injury while water skiing two and a half years ago. She is his full-time carer.
5:00 – 5:30 am - check to see if John needs changing, hoist him to the bathroom if needed. Change the sheets if they are soiled.
6:00 am - girls are awake! Change diapers and sheets if they are wet. Start on their breakfast.
6:30 – wake my son. Iron his uniform, and make his lunch.
6:50 - set the girls up to watch cartoons and have a bottle.
7:00 - Help John up - he cannot bear weight, so needs to be hoisted to the shower commode and wheeled into the shower. Turn shower on. He has significant paralysis and cannot wash himself or his hair, so I do it.
7:10 - check the girls
7:20 - help John out of the shower - dry him in his commode chair and hoist him in to his wheelchair where I can help him to get dressed.
7:30 - hound my son to hurry up and finish breakfast and to pack his bag.
7:45 - help John to put his shoes on - he has a lot of trouble, but prefers to try to do them himself. Start John's breakfast and meds.
8:00 - after the kids are dressed and John’s breakfast is organised I wait for the neighbour to arrive - she waits with John while I walk my son to school with the girls. John shouldn’t be left alone.
8:30 - quick hello to the school parents and teachers and head home to relieve the neighbour
8:50 - clean up from breakfast. Begin washing
9:30 - neighbour calls to tell me she was concerned when she waited with John this morning after she saw him forcibly try to poke his eye with a folk. I reassure her that we know, and are now only giving him plastic spoons to eat with - and that the Dr is aware of this.
10:00 - take John to the toilet. Help hoist him there and back.
10:30 - John is sick - this isn’t unusual. He has digestive problems. Hoist him back to the shower to clean and change his clothes.
11:00 - give the girls a snack and help them into bed for their nap
11:30 - call John's psychologist and see if there have been any cancellations and if we are able to get into see her sooner. Call Disability Services and see how John's application for home assistance is going (that we have now been waiting for over 18 months for)
Noon - John's physio arrives - help hoist John onto the yoga mats and assist in the muscle stretching exercises. John doesn’t like this so it takes a lot of motivation to get him to cooperate
1:00pm - get the girls up and then make their lunch and John's. Give John soup with a spoon and offer to feed him.
2:00 - clean the girls up and set them up in the sand pit for a play. Help John back to the toilet.
2:20 - realise I'm out of milk and phone a friend to come and watch John while I run to the shops and post the mail. No one is available; I cannot take the girls out with John unassisted, so I’ll just have to wait.
3:00 - wait for my son to arrive home from school. Start on homework, afternoon tea, and help him get ready for Scouts. Read school notes - read letter from the school counsellor who thinks he is anxious and would benefit with more one on one time with his mother. Sigh. Bringing the washing, finish making the beds, defrost something for dinner.
3:45 - Check mail - try not to notice how many overdue bills are building up on the kitchen bench. Take mental note of advised landlord inspection date and quickly work out in my head if I can arrange for someone to help me with John and the girls so we can be out of the house.
4:00 - make John coffee - and turn on the TV for him - call neighbour to watch John while I take our son to Scouts. She politely asks if I could leave the kids instead and take John with me.
4:10 - coax John into coming out to take our son to Scouts. His chair can’t fit in the car, so we use a hoist to help him into the passenger seat - but he finds it uncomfortable and doesn’t like to travel.
4:45 - help John out the car, and make him another coffee. Clean up the tub of talcum powder the girls have dispatched though the dining room.
5:00 - bath the girls - wash and dry their hair and set them up to watch cartoon while I fix dinner
5:30 - while cooking John is sick again. Quickly keep an eye out for girls and help hoist him to the shower, change his clothes and clean his chair.
6:00 - call around to the other parents at Scouts to see if someone can drop my son home as I can am too late to get there - thankfully someone can.
6:40 - dinner - I feed the kids first before helping John - though he’s not hungry tonight. Get my son to shower and finish his homework, and do one-on-one reading with him.
7:00 - read the girls a story and tuck them into bed.
7:30 - check emails again. Write replies - all information I’ve written 100 times before to 100 different people who are involved in helping me to get some help with John.
8:00 - clean the kitchen from dinner. Get my son to bed.
8:30 - help John out of his wheel chair on to the sofa and watch TV
10:00 - help John into bed. Fit him with incontinence wear for overnight, attach sleep apnoea machine, turn. Put John's TEDs on his legs. Put the bedhead high enough for him to be comfortable, with the tray table in reach. Turn on baby monitor.
11:00 - I go to bed, alone in the room next door - as John's bed is too big to fit in the bedroom he is in the living room. Switch on the baby monitor.
12:30 - One of the girls is awake. She is coughing and needs her Ventolin puffer.
1:00 - John calls through the baby monitor, he is sick again. I help him with the hoist and change him.
1:50am - I go back to bed, knowing it will only be another hour before I'm needed again. And I wonder how much longer I can do this every day.
Are you a carer needing support, or do you know someone who does?
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