My wife has been diagnosed with MND-ALS + FTD

[Deety]

Oh Dave, my heart goes out to you and to Julie. This is just so awful. I'll be thinking of you both, for all the good that does. I remember when we were waiting for the diagnosis and we kept saying "maybe it'll just be cancer or a tumor," because even then we knew it would be a cleaner death. Now, I'm just aghast at what this disease is capable of, and other people really don't get it.

 

[affected]

I hope you find a place of acceptance soon.

I can say that Chris had a very peaceful and dignified death. I knew he was at end stage 4 days before he was taken. An incredible calm settled over me that I had not felt at all during the whole time leading to then. I was able to give him very effective palliative care in those last days and it was the first time he was also at peace for years.

This forum is all about support, and this is your thread, so you rant however you need to. The turmoil is perfectly normal - we never want to lose them, and yet we don't want them suffering. That creates a strong paradox that we struggle with.

Peace to you Dave

 

[Dave Kerwood]

Hi Tillie...

I have bee told (and read) many times that the end is peaceful and coupled with Julie's FTD she simply does not know or understand that she has any problems or that these problems are terminal, so, I am grateful for the latter, Julie not knowing anything... I know this seems rather bazaar... How could someone not know or understand this but, for Julie it is a blessing in disguise.

Well, another day is about to dawn, nothing planned for today at all, well, not as of yet. Going to play it by ear and see what happens.

Dave

 

[Dave Kerwood]

I may be posting some good news with regards to Julie's eating and calories later this afternoon (after dinner) as I have had a few ideas and it seems to be going well today... I won't say any more otherwise I may put the kibosh on today's work / plans.

 

[Dave Kerwood]

Thursday 17 December 2015

• 257 Kcal - Hot pureed toffee & apple pudding - (Breakfast) - (NEW)
  
  300 Kcal - 125ml Ensure Plus
  
  135 Kcal - 40ml Pro-Cal Shot - (NEW)
  
  312 Kcal - Hot pureed bacon sandwich - (Lunch) - (NEW)
  
  300 Kcal - 125ml Ensure Plus
  
  150 Kcal - 40ml Pro-Cal Shot - (NEW)
  
  732 Kcal - Hot pureed Cauliflower & Broccoli bake with cheese sauce + Hot pureed lemon sponge & lemon sauce pudding - (Dinner)
  
  605 Kcal - 100ml Fresh double cream + 40ml Pro-Cal Shot - (NEW)
  
  - - - - - - - - -
  2791 Kcal - Total
  - - - - - - - - -

((NEW) = Never tried before until today)

I knew I would get there in the end... Small breakfast is better than none, small lunch lunch is better than big and the big dinner stays as it was (with more encouragement).

TA-DA!... Success at last...

 

[Dave Kerwood]

Julie has gone to bed... my dinner is sorted... Decided on a cold can of 'Corale Ravioli' but not just any 'Ravioli'... Ravioli made with egg pasta with minced beef filling in a rich tomato sauce.

 

[affected]

well done Dave

They can become even more sleepy if the amount of food is increased, don't be alarmed by that - the body needs to adjust and because digestion takes so much energy for a PALS they often will nap more.

Usually after an adjustment they get to use the calories, but of course only in a comparative sense ...

hope you enjoyed your canned food, sounds like it's a favourite

I must go dig up some sweet potatoes this morning as I've finally eaten the last of last summers pumpkins ...

 

[Dave Kerwood]

Thanks for the info Tillie, I never thought of that.

Julie does sleep well at night (6pm - 8am) of late (believe it or not) but never naps during the day.

I awoke early as usual, been watching TV for the past 3 hours (since 2am, again) which is not a problem as I have sort of gotten used to it. In this time I have also been thinking, thinking of Christmas, moving, our packed up and boxed house (ready for moving) been like this now for some 3 months and I thought, what the heck, let's unpack this house and stop here, then I thought Bathroom is upstairs, we to have a toilet downstairs but no bathroom, so I am back to square one again.

This house has steep stairs (very steep and narrow with small landings top and bottom) so a chair lift won't work... Anyway, nothing to do with Julie, just rambling on... Sorry...

I were thinking about all the lovely Christmases that we have had together, the great times, the stockings full of presents, the noise, the food, the smells, the fun and then it hit me... This year is going to be a very quiet one indeed, OK, have a few coming around on the 26th for dinner but Christmas day is going to be so different (I love Christmas by the way)...

So... I know Julie and I agreed, as we did last year, to only buy a couple of small presents for each other but I am going to do a secret 'Santa's sack' for Julie. Julie is in Day Care on Monday so this will be my day to go out and fill the sack.

On Christmas morning I will get up as usual (2am) dig out and build the large glass dining table (Yep, that's been packed for months too), set it up for Christmas dinner then I am going to put Julie's 'Santa's Sack' which will be full of presents at the foot of our bed and wait until Julie wakes up and finds it. I will have to remember to wrap all these presents in the cheapest Christmas paper that I can find (paper that tears by looking at it) as Julies fingers are really struggling now as she is unable to open a letter or any type of packaging now.

This year, Julie is going to have fun... and I am going to enjoy watching her have that fun too...

 

[Atsugi]

Sounds like a good plan. You're doing well.

 

[affected]

so lovely Dave xxx

 

[Dave Kerwood]

OK... It happened again...

Went to the local GP surgery this afternoon to get Julie her flu jab (injection)

Julie was with me and the conversation went like this:

Dave (me) - "Hi, we are here for the flu Jab"

Receptionist - "Is it for you or your mother"

Dave (me) - "It is for Julie who is my wife"

- - - - - - -

REALLY? - We have been going to the same GP surgery for 17 years...

 

[Atsugi]

So sorry. I've seen that lots of times.

 

[Dave Kerwood]

So sorry. I've seen that lots of times.

But... I would have said "I'm so sorry" if I were in this situation, nope, nothing the next words that came out of her mouth was:

"and What's her date of birth?"

Absolutely no emotion whatsoever...

 

[Atsugi]

Glass half full answer: The receptionist was so embarrassed, she didn't know what to say, so she went back to the script.

Glass half empty answer: What an a***ole!

I'm often asked if I'm a glass half empty person. I say no. I figure the glass is cracked and leaking.

 

[affected]

The glass is always full, it's just that some of it is full of air

That was an awkward moment Dave, sorry she didn't handle it well!