Thank you for the warm welcome bowling bun and thira.
So, my dad fell of the roof in 2016, two days after he turned 64. He survived with spinal cord injury at T6/L1, severe communicating hydrocephalus, and significant cognitive impairment. He has, however been assessed as having capacity to make his own decisions though it became clear quite quickly that my mum needed to act on his behalf for everything from phone calls to arranging the home adaptions etc.
His disability impacts him both physically and cognitively. Due to the level of spinal cord injury he isn’t double incontinent and besides catheter changes my mum manages every aspect of I say continence care as he is not capable of doing this himself. He also can’t access the upstairs bathroom or bedroom as he is only ambulant in a wheelchair. This means he has to be moved manually by my mum, whether turning him in bed at night or during the day, or lifting him on and off the toilet. Of course his bowel is not managed well meaning many many accidents a day to clean up. This is all very exhausting for a man with severe brain damage.
As his insight is impaired he needs to be encouraged to wash himself. Carer comes in and runs a basin of water and brings to him and hands him a flannel. Always seems to avoid helping with the commode and catheter bag changes. Accidents on the bed - forget about it. Legs it asap. Spends maybe a maximum of 10 mins helping. Means mum does everything really. Hair washing, shaving, foot care, nails, bum wiping. Takes her all day. He won’t ever go out. He is too afraid of accidents.
He has dysphasia from prolonged tracheotomy and often chokes on food. Always scares us, sometimes needs a massive slap on the back to dislodge the food he’s choking on.
Weird dreams and hallucinations. Gives people different names. Thinks I’m still a child though I have two children of my own. Quite aware of his own loss. Grieves it. Oblivious to our loss and grief. We care for someone who is not who he used to be. Has no empathy, little emotion, extremely libel though. This man is not my dad. My dad died with the accident. My mum lost her husband. He just doesn’t have capacity to be a dad or husband anymore. My daughter can’t bare to be near him. His angry outbursts saw to that. He is very rude to us all the time. Best to just keep quiet and see to his needs.
Becoming OCD about time and objects on his table. Institutionalised i would say.
These are very sad times for us. And full of frustration.
On the upside, we finally managed to pull together enough cash to build an extension that will give my dad a bedroom and a bathroom which will help get him clean and give him some privacy. But it won’t actually change much other than him getting cleaner.
Dad just had a week at a nursing home while the build started. Demanded home early. Told us all we put him there to punish him. Had to Be straight with him. He going back when it’s time for mum to have a break. Like it or no. The care staff did fall short in terms of bowel care Andy that is so importantly with spinal cord injury. One care giver shouted at the nurse demanding how he was supposed to wipe the shit of his arse when he only supposed to wipe his hole. ThAt didn’t go well.