Monday 9 January 2017

2017 - will be a big year i think

I have been thinking about time lines lately, and when Mum was diagnosed and how long had symptoms been there before things got bad. I will endeavor to write it all down to serve as a reminder

The week before Christmas we went out for lunch with Mum and Dad. He suggested a place, and it seemed nice, but not appropriate for mum.  He had been there within the last 6 weeks, and still didn't grasp that the food was unsuitable considering her abilities and needs.

She needs to eat something simple that can be eaten with a fork or spoon now.  Instead this was a place where it was platters of dips and pates, and breads and miscellaneous stuff. She was so confused. She didn't know what to do with what, there were so many things on the table, she wanted to touch everything. In the end, dad had to put all the bits of finger food in her mouth with his hands. He had to put the dip on the bread and feed her like a one year old. She didn't know what goes with what, and got dip on her fingers and under her nails. It was humiliating for her.  He obviously doesn't think about choosing a place that has a simple array of foods. A single bowl, a single fork or spoon is what she needs. If given a knife and a fork, she just taps away at the plate without a clue what to do. Take the knife away, and she can eat independently with little help. If there are lots of things on the table (sauces, condiments, extras) that causes confusion. She doesn't know what is hers, what is shared and what is somebody elses.

Then last week, they came to visit us for the day. He didn't bring her tablets, so she missed her lunch time tablets, got agitated, and was in pain, and it couldn't be remedied. So the visit was miserable (again). She was in tears and they ended up leaving. I'm not sure why he thinks it is ok, at this point in the game to be missing lunch time tablets and delaying them for 5 or 6 hours.  Of course she is going to get confused and agitated when the drugs wear off, and aren't topped up. To leave the house without her pain tablets and her lunch time and afternoon tablets is very obviously going to cause upset for her, and then more drama and work for him in the long run.

She obviously is struggling to toilet herself and needs assistance with that.

The time has come when she needs to be in permanent residential care. Dad is unbearable. Friends and family are dropping like flies, and he continues on. He doesn't understand that everyone is burnt out from this, and that is why they pull away, he takes offence to it. He doesn't understand that people don't visit as much because it's not anyone's idea of fun to spend time with them. It's purely obligation and guilt and pity that drive people to visit. If he lets it go on too long, he will wake up and have nothing left.

He sent me a new years message that said "looking forward to a better year this year".  I wonder if he is blind to the facts or trying to block them out.  The facts as I see them are; this is quite probably going to be the worst year in his life to date.  This is going to be the year that he will need to make the decision to put mum in permanent residential care.  And then once he makes the decision, he will have to decide to either lie to her in order to save her some of the anxiety and stress leading up to that date, or decide to tell her the truth and deal with the consequences of that. Then he has to actually go through the process of putting her in a home. Then he has to go home alone and deal with that, think about what he is going to do with the rest of his life and proceed to mourn, grieve, visit etc. It's going to be horrendous, much much worse before it gets any better. Bleak.

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