Mum looks so unwell

[justwantmymum]

Haven’t seen my mum since Jan; agreed with family I’d get this term of uni out the way and then pop back to see her. She’s 150 miles away. Age 57, frontotemproal dementia.

New care home offered to put her on FaceTime, she smiled once but the rest of the time she was sort of slumped to one side and just staring into space, face completely blank. My whole stomach dropped. She didn’t look so unwell last time I saw her.

My sister wants to visit her but she hasn’t seen her for a year, severe autism and learning difficulty; she phoned me earlier upset because mother’s day and ‘I don’t want mummy to die’ and fucking hell. Managed to calm her by saying mum isn’t dying right this moment.

I haven’t a clue what to do about it all. Wide awake and wishing I could rewind time and take it all away somehow.

How awful for you all to be dealing with this so young. I am older than your mum and have felt the same about my own mum but it is heartbreaking to think of someone so young going through it - and to think of someone the age of my kids having a parent in that position.

I see my mum every week - she is in a nursing home - and I don't really notice the deterioration until I look at photos of her. She might smile and say the odd thing - it's like she knows how to start a conversation but can't carry it on. She will say "Oh - you'll never guess who was here last week" or "I've got some news for you" but nothing more. For me the biggest shock has been the deterioration in her motor skills. Her left hand is curled into a fist and bent against her chest and now her right hand is going the same way. She just uses two fingers and a thumb to pick up sweets and put them in her mouth.

It is a horrible disease and so unfair.

Frontal lobe dementia is awful. It can make the person devoid of all emotions and motivation for anything. Staring into space is quite typical. I’m so sorry you are all going through this, it is a horrible disease.