My wife has been diagnosed with MND-ALS + FTD

[Deety]

Dave, I think about you and Julie a lot. And I hope you are able to take care of yourself a bit over the holidays. (While my husband was away overnight with his college friends, I slept. And slept. And slept.)

 

[Dave Kerwood]

Thanks Deety...

I dream of sleeping but that is not an option for me even when I do get a break...

My head / brain is in control of me, I don't mind as I am getting sort of used to it now. A problem before is now sort of normal.

Thank you of thinking about us, it means a lot, especially to me.

This forum has been my savour, I feel that I can say anything (within reason) and I will not be condemned...

 

[Dave Kerwood]

Today is party day. I have been invited to the dementia day care centre to mingle with the staff and 'clients' from 1:30pm until 3pm, apparently there is some entertainment and tea / coffee is provided.

Julie is happy (or will be when I remind her that I am coming to the centre when she wakes up) and tell her that today she returns back home with me in the car rather than the mini bus.

Today is also the first anniversary of Julie's diagnosis's. Can you have an anniversary for a diagnosis, or is that going too far?...

Dave X

 

[affected]

I hope the party is lovely for everyone, but especially for you and Julie.

I guess you can have an anniversary - my Chris was already gone before that first year rolled around ...

I can understand that there is no point going back for appointments regarding the FTD since they can't do anything to treat it. One less thing for you to keep organised about really, and one less thing for Julie to be apprehensive during. It's not like one day it was going to sink in for her, so giving that away seems very fair.

 

[Dave Kerwood]

I am nervous with regards to the little party to be honest, I don't know why, Just am...

We are very lucking to get a year and am hoping for another one, I'm always optimistic...

Yes, the FTD appointments, well from now on in, are really a waste of time as nothing can be solved and like you have said, one less thing for Julie to be apprehensive about.

This morning I dug out the large glass dining table (which was at the back of all the trillions of large / heavy packing boxes) and have sorted out the dining room so it fits, I had to loose a sofa though... Julie came down this morning and her eyes opened wide whilst she clapped with Joy... We are finally ready for Christmas...

 

[affected]

well done getting the table done!

let us know how the afternoon goes, I would be a little nervous too.

 

[Dave Kerwood]

Julie is going to have so much fun this Christmas as up and until 20 minutes ago there was going to be no visitors for Christmas day so I was not going to cook a Christmas dinner for myself, was going to wait until the day after (UK holiday) when Son and is girlfriend are coming for dinner.

Well... Just had a phone call from Son saying that they will be coming for Christmas dinner now, so I get to cook 2 x Christmas dinners (both days)... Talk about leaving it to the last minute... I think the turkey, beef and pork will defrost in time....

When I tell Julie this news at her day care she is going to be sooooooo happy indeed.

 

[Dave Kerwood]

Back from spending 1.5 hours at Julie's day centre. They had an entertainer on, the entertainment was an Elvis Presley entertainer... Everyone loved it (me I had to bite my tongue and really try hard not to burst out laughing)

The folk there (all had dementia) absolutely loved it and I could see that it brought back so many old memories. Julie got up and danced with everyone. I got pulled up by a really old lady and all she did was hold her hips and gyrate from side to side for the entire song at me.

All in all, a day to remember... One sad 'Elvis' song nearly brought me to tears, it was not the song, it was the fact that my Julie was there with all these lovely people, some barely awake, some could not stop talking, some were in obvious distress and the rest were completely oblivious to the fact that they were there or why they were there

I felt honoured to be there. I wonder if they do accept volunteers, I must ask after the holiday break... I were, quite literally, so proud of all the staff there. My Julie and all the other folk there were well looked after and I could see it in the carers eyes that they loved their jobs, paid or unpaid...

So, thank you Care2Care... You really do care and mean so much to so many folk that would be left on the wayside if you were not there to help.

 

[affected]

I'm so glad you went, it sounds like a wonderful afternoon for everyone and as sad as it is to think Julie has to be there, you know she is in a great place.

Are you thinking you might volunteer there after Julie is gone?

Now to your cooking, you do have a busy kitchen time for a couple of days!

 

[Dave Kerwood]

Morning Tillie (it is here, 04:00 something)

I like waking up as I always have a message from you to reply too - Thank you...

Yesterday was the best day (for me) so far in a very long time, it was but only a very brief visit but I am still thinking of it this morning. So sad and so happy all rolled into one.

Yes, exactly what I am thinking with the volunteering role as I know that I can make folk happy as well as helping folk like myself by giving them a break too. The day centre was exactly as I would have imagined it to be like but a million times better.

I never got to chat to everyone, the one person I wanted to chat too but didn't was a gentleman in a wheel chair (Stephen Hawkins type wheel chair) who I was told had the exact same problems as Julie (ALS + FTD) and was obviously far more advanced than Julie was, hence the reason I nearly lost it yesterday afternoon.

Christmas... There was me thinking that Christmas day in out house would be ever-so-quiet this year, the first quiet Christmas ever and then things changed. Julie and I are absolutely over the moon now. This Christmas is going to be the best one ever Christmas.

Before I went to Julie's day centre yesterday I wrapped up all the 'Secret Santa' presents I bought for Julie to which I am going to place at the foot of her bed on Christmas morning. I went a bit too far as I managed to fill 2 large 'Santa Sacks'. I did wrap them all up in the same cheap paper so that Julie can be able to rip the paper off easily...

Tomorrow is going to be so much Fun...

I will wish you a happy Christmas now Tillie as it is not that far away for you now, although it may not be all things considering, but I would hate it if folk not wish me a happy Christmas after Julie has gone... Are you doing anything special over the festive season?

Dave X

 

[affected]

So lovely that you have had some brightness in the past 24 hours Dave, you deserve every bit of it! And family for xmas and enormous amounts of presents for Julie to open and find delight in. I love the image I have in my head of what you have painted

To be honest I'm struggling with xmas this year. I was fine and made plans that I thought I was happy with but the past week has been tough and I'm feeling the loss of many things.
It's strange but by the second xmas without your husband everyone has just gone on to do their own thing and I'm no longer the centre of the family. No not everyone I shouldn't say that, others who understand ALS give me great support and never forget.

Anyway, I will be up a little earlier than usual (I'm usually up around 5) and will be at the koala care centre where I work voluntary by 7am, to do all the treatments for the sick koalas.
I'm also treasurer, so then I will do a little bill paying until a few other volunteers arrive at 9.30 and we will clean all the runs and feed the sick/injured koalas. Normally this would happen at 1.30 pm but on xmas day we do it early.
Then some of us will meet in a big herb garden just behind the care centre in the university grounds and share a lunch.

I dug up a big lot of sweet potato this morning and made a lovely salad with them, and cooked some ready for dinner boxing day as my youngest son arrives that afternoon. He is vegan and is teaching me to make a great sounding dish!
Boxing day is my regular day to work all day at the care centre so I will be back there again.
My son's girlfriend will come on Sunday morning and we will all head up to the gold coast together and have tickets to see the new Star Wars movie at one of the big cinemas (our little country ones don't have the best screens). We will do lunch and make a day of it.

So a quiet one for me, but I just haven't got the ho ho ho in me this year so it's best, as I won't feel like I'm trying to be what people may want, I'll just be doing my own thing.

It's actually going to be a cool xmas for a change, often it's sweltering but not this year so that's a plus.

You made me smile to think that you know you wake up to find a message from me. Isn't it wonderful to have the support of people who get it!

 

[Dave Kerwood]

I cannot begin to imagine what each holiday means to you Tillie, but I will know at some point.

You, as everyone here has to 'do Christmas' in the way that works for them and not doing someone else's Christmas, if this means crying, laughing, working, doing whatever to get through this time then so be it, if it works then it works.

I am luckily enough to be able to celebrate Christmas 2015 with my lovely wife, who know if we will get another and or another, I don't know so this is why I am going to make this Christmas ever-so-special for Julie, you, on the other hand have already lost your Chris and have to muddle through the best you can and by the sound of things you are going to be one very busy lady indeed.

If you don't mind, I will send a Christmas greeting on Christmas day, which will be hours after your Christmas arrives, to say that I am thinking about you at this time.

I do not believe in dropping folk when things gets worse (or better)... Once a friend always a friend and if I may say this, I consider you a friend even though we have only exchanged a few messages...

PS... I am not a stalker LOL..

Dave X

 

[Dave Kerwood]

We are ready for Christmas....

The only sad part is, everything on the table Julie cannot eat... But it makes her happy to keep our day the same as always even if we have enough chocolates to last until next Christmas.

< Dave, that site requires a password to see the image -- Mod >

Dave X

 

[affected]

Thanks Dave, and yes make your xmas day with Julie the absolute best day you can, for both of you - what a wonderful memory you will then hold forever.

Because Chris really had behavioural FTD he was fully aware of everything in his warped way. So he knew when his last xmas came along and he planned the presents he gave to everyone and they were macabre and one of the girls ran from the room crying with a screech.
He became increasingly morose in the week leading up saying he knew it was his last and that he was dreading the day.

He spent much of the day crying and it was very difficult for us all to help him or have a nice day and we all knew it would be his last. I so wish I had a last xmas with Chris memory of a santa sack and him gleefully opening many presents and being delighted.

So I am comforted that you have been able to go all out to give Julie a wonderful day of gifts, surprises, family and treats. I celebrate that with you!

I will be checking in and of course will check your thread You are discovering that we are family here, it's a wonderful thing, a light in the darkness

ps any man would probably stalk my new avatar at least ... bwahahahaha

 

[Dave Kerwood]

Turkey is in the fridge defrosting for the 26th Dec, Beef and pork has been successfully defrosted and is back in the fridge... Panic over.

This afternoon I have been on the 'Red wine' because it is Christmas Eve and have put on so many Christmas songs for the both of us, Julie is happy and gets up to dance (in her own way) and I join in too (I absolutely cannot dance but Julie loves it)

Today, here, it is 15:35 and I am danced out but Julie keeps on going... I hate to think what our neighbours are thinking right now...

Got to go as "When a child is born" sang by Johnny Mathis is playing and Julie wants another dance...

Christmas Eve is the best ever so far...