Real stories

Mark's dementia has advanced but I'm hoping to bring him home for Christmas

'Things have changed a lot'

Things have changed a lot since you last visited and filmed us. Mark's Frontotemporal dementia (FTD) has advanced quite significantly and it's been quite rapid.

He's lost a lot more of his functions and his ability to do different things.

He's responding less to things as well. It's got harder to look after him at home, it's got increasingly difficult to give him the care he needs.

He started to need 24/7 care, so I took the decision that it was time for full-time care in a specialised home.

So Mark has sadly moved into full-time care now but it's a wonderful place and he settled extremely well. 

The staff are just amazing and the place is lovely. He just seems so calm and his needs are met.

William and I have started to rebuild our lives now and do the things that we couldn't do before.

Bringing Mark home for Christmas

For Christmas this year, I'm really hoping to bring Mark home for Christmas Day so that we can spend a bit of time at home together as a family and have something to eat, play with William's toys and then take him back when we've had a few hours together.

It's a bit different to our usual Christmases. But I'm hoping that we can still spend it together.

This year William's actually really looking forward to Christmas because it's the first year that it's really had meaning for him (he’s four-and-a-half-years-old). He's enjoyed going to see Santa and has written a letter to Santa too.

William does ask about Mark a lot and he enjoys going to see his daddy, so I think he'll be really pleased that he can come home for a few hours at Christmas. We can just spend that time together.

It has been difficult for William. He's found the transition strange, but he's adapted really well and quite quickly, as I think children do. To start off with, he thought that we were moving as well and that we were all going and then he was very confused why I wasn't cooking Mark's tea.

He'd ask if I was making dinner for Daddy as well, and who was going to make Daddy's dinner.

But we have a routine and we go and see him pretty much the same time every week, so William expects that and he looks forward to it.

Hopes and fears for the new year

I've got lots of hopes for the new year, and of course there are lots of fears.

The fears are that Mark will continue to deteriorate at a rapid speed.

It is extremely rapid and week-by-week he's different, so we just don't know how long he's got left and we don't know how he's going to change over the next few weeks, few months, so that that really is fearful.

I don't know whether it's going to happen in the first few months or later on in the year, but you know, I know something will happen eventually.

That is the progressive nature of dementia, I think.

But I just hope that I can continue to see Mark and keep him where he is because he's so settled. It's such a lovely place and they make us welcome when we go as well. So it's like a home-from-home and we feel comfortable and we can go when we like.

I hope that if Mark's settled, William and I can start doing new things and making new memories.

Raising awareness of Frontotemporal dementia 

New Year's is like a countdown because you know that the next year is going to be worse than the one before and the one before that, so it's not like a fresh start and new beginnings. It's just a countdown to what's going to happen next, how he's going to deteriorate.

The Mark you saw in January, February time (in Caroline's previous blog) is so, so different to Mark now. So you've kind of been on that journey because it's a fast journey.

I'm pleased I've been part of the 'Ultimate Vow' project with Alzheimer's Society to share our story because what I really wanted to do was to raise awareness of Frontotemporal dementia in younger people.

People didn't understand, people don't know about it.

It's often misdiagnosed and I just wanted to put it out there and say 'look this is real'. This does happen to people our age.

It's also just so that people can have that awareness, like when Mark was out and about and you'd get the funny comments and the funny looks and it was really unpleasant.

I just wanted to raise that and hopefully people will fund and donate. Ultimately, the main thing is to do research and to find a cure.