Update - nearly 2 years in

It is soul destroying to watch the symptoms of this heart breaking diagnosis. I completely understand how lonely you feel, there may be other people around you but the grief and exhaustion feels overwhelming. My husband lived 17 months after his diagnosis, his cognitive function fluctuated but he was still fundamentally the same person and it was only in the final few weeks that it deteriorated. I know that I was lucky in that respect but watching the person you love go through this is so difficult.  The guilt of wanting it to end verses not want to loose them is all consuming. 

You are doing an amazing job, I think that the conversation with your kids will happen, take all the Macmillan help you can get. Hold on to the small memories. 

Sulubee

oh Jobo, I just want to reach out give you a hug. So much of what you said resonated with me. It all sounds so similar in many ways to how G was. It's so hard seeing the changes in them. There was no reasoning with G for the last few months of his life. 

I also understand what you mean in relation to timescales. We were initially told G had 12-15 months and in the end that proved to be 38months and one day.  Having an inaccurate timescale can be soul destroying but I'd be careful of trying to hide the seriousness of this from your kids and father-in-law. You know the situation best and what they can cope with hearing but I've always found honesty was best, even if it is hard to hear, especially considering the changes you're seeing. Kids especially Google so don't be surprised if they already half know.

Please remember that this group is here for you. We get it. If there's anything I can answer for you, please ask. I worked from home up until the week before G passed away so I get the work challenges too.

Please also recognise that you are doing an incredible job - everyone on this journey is - in very difficult circumstances. 

sending you love and light and hugs and strength.

love n hugs

Wee Me xx

I'm so sorry Jobo, it's so cruel.

Glad to hear you've got the support from the Macmillan folks. Don't forget to take care of yourself too. Try and take breaks when you can and hopefully you've got friends or family that can provide emotional support because you're dealing with a hell of a lot. 

To echo WeeMe, you're not alone and this group is here whenever you need to share with people who have been there and can properly empathise just how bloody difficult this is.

Sending hugs

Chris

Your story seems very similar to mine although I'm not so far down the road.My husband (56yr) was diagnosed in May 2023 so 17 months,of all the things I notice it's the short term memory and personality.

We were in the pub today and was chatting and he was saying he's never been given a long term prognosis (time frame), I've lost count of how many times I've explained to him we have, whether that's denial or memory or both.

At the moment he works but sometimes I wonder how as at times as he can't seem to figure out very simple things such as altering apps on phone and yet somehow he can work on multi million work projects.

We are obviously lucky at the moment that he can work and to the untrained eye would appear everything is fine where that really isn't the case.

On the note of steroids it made my husband quite grumpy and he wouldn't stop eating although he doesn't seem to put on any weight, he's not on them at the moment.

He has a meeting with a consultant next week, he's latest scan showed slight changes so will see.

Your not alone Jobo 

Thank you :)  we are now under the local team so have a lot of support from macmillan which is good.  I have gone from trying to make memories to just taking those small moments in time like going out for lunch when we can.  Its hard as he rarely remembers what we do :( & I want my memories to be good ones.  So sorry you've been through this too. xx

Thank you so much, I've been reading your story and what an amazing job you did.  It definitely sounds very similar in terms of physical and mental changes.  I definitely feel like hes getting worse with his memory and he repeats the same thing a lot!  I feel that the time is right to tell the kids more and also his dad but I think he is in denial and thinks he will be able to beat it.  I am hoping that the macmillan nurses will be able to help us with this. He is so stubborn!  

This morning a friend of his came over and was telling us he is going on holiday to Vietnam, my husband said why can't I do that?! I an go away and do things like that! Honestly he cant find his way back from the loo when we go out!  Anyway suffice to say we wont be attempting going abroad again!  

Thank you for the hug, its most appreciated :) 

XX

Thank you.  Sometimes it just feels overwhelming doesn't it? I am trying to just take it a week at a time if I can.  Family and friends are great but as you say no one really understands unless they have experienced it and just how all consuming it is.  I honestly feel like I am living with a different person which really makes me so sad.  I am trying to make some time for myself, just having a bath and getting half an hour definitely helps.  I sometimes just feel like I am living in groundhog day!  

Thanks again, I appreciate it xx

Hi 

Yes definite parallels!  I was 51 and my husband was 57 when he had his seizure and was diagnosed.  I think I kind of mentally prepared for looking after his physically but the moods and personality changes seemed to come out of nowhere!  We went through a horrible few months where I was at breaking point, they've changed some of his medication which seems to have stabilised things a bit thankfully as he really wasn't nice to be around at all, accusing me of all sorts!  Your husband is doing well to still be at work, I can totally relate to being different with other people too, he seems to save his moodiness for me! 

Good luck with the consultant appointment, fingers crossed for you.

Hugs 

xx

Oh Jobo, looks like we're on a very similar course of events. First visit back to get bloods this week, so we'll see how the platelets count is.

The personality change really seems to be the hardest thing to deal with that's for sure.

We made the decision in the summer holidays to tell our 9 & 10 yo kids what the (eventual) outcome will be without giving a timeline, a lot of tears that night for sure, but they then couldn't do enough for their mummy once it was all out in the open. It helped that they didn't need to go back to school the next day though.

Unfortunately my wife is the stubborn type who doesn't seem to want the help - I get that given the independence side of things must feel like a rug being pulled from beneath her with the immediate loss of driving, mobility issues, word switching and general frustration & upset each and every day, but I sure wish she'd be a bit more open to help!

It's very difficult with the independence thing...my husband keeps getting moment's when he thinks he will get his licence back and I have to remind him it will be after treatment and maybe not at all.

I also found when my husband was initially on steroids after he was first diagnosed which made him stubborn and moody,he isn't on them at all now and he's moods improved dramatically.

Hug x