I have been away from blogging for quite a while now, this is due to my wife’s (Julie) diagnosis of Early Onset Frontal/Temporal Dementia. This is not the protein type of dementia but has been caused by the dying of the Frontal/Temporal lobe due to a lack of blood, which has been brought on by Anti-Phospholipid syndrome. The lupus side of things are in remission and the dementia is now my focus. I will keep the blog name and address as the same as it is still about my life as a carer and she does have Lupus.
So what has been happening, well as you can imagine lots of trips to Perth to see one *ologist or another. Last time we went up we actually saw a Hepatologist and found out that there could be something wrong with her Liver, which is going to need further investigation, so we will add that to the list.
The hardest thing at the moment is coping with what I am seeing from Julie, the forgetting of simple things like using the tv remote. The forgetting what she was saying part way through a sentence. The forgetting about a movie or programme she saw just a day or two ago. The constant tiredness, the lack of personal hygiene, the lack of energy and motivation.
Now that sounds like every hour of every day is awful, but it isn’t these are just the worst of things that happen over the days and weeks. I am now seeing a Psychologist for counselling, to work out some coping strategies that will keep me sane over the remaining few years. My issue has been that I am not Superman even though I try to be.
This will resonate with any carer as you want to make sure that you do everything in your power to help the one you love. When you get something wrong then you are critical of yourself even though it may not have been your fault. You constantly think of things that you have done and try to imagine how you can do them better. Losing sleep because you are thinking of tomorrow and the day after and what you need to do.
What are you not doing, thinking and looking after yourself, the end result will be you will drain yourself and have a breakdown, then who is going to look after your partner – that is not meant to add another problem to the mix it is just the reality of not looking after yourself.
So what have I been doing, well I have booked us 10 days away over Christmas to visit Melbourne, flying business class and staying in a swanky hotel. Now just looking for things that someone with a disability can do easily.
The other thing is I have started an Ebay store, so that things I get from auctions, garage sales etc can be sold on and give us some pocket money. Of course I have let Centrelink know about this, but as long as I keep it to 25 hours or less, and don’t earn more than $304 a fortnight it will not affect the payments I get.
Well I am writing this at night, and after an hours counselling it can take it out of you, so I am off to bed to put into practice some of the things my counsellor told me.