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Reply by Nouce
09 Dec 2014, 1:09 AM

Dear all,
     This is almost uncanny--suddenly the reality of dementia raising its head. Today while I was at work and a student aide was with Pablo, he called me (I was in a meeting) and was all upset because he couldn't figure out how to get his voice mails. I gave my student-aide the information, and there weren't any voice mails (I had actually put on a message a few weeks ago asking people not to leave messages). When I got home he was very upset because he had tried to send an e-mail to our son in law and couldn't remember how.
     I tried setting up speed dial, but he can't remember how to do that either. Just today everything seems to have gotten worse for him--worry and forgetting and frustration. Will we wake up tomorrow and have it still be worse, or will some rest give him a bit more "presence"?  Oldbat, you're right: "There are no familiar landmarks to guide them, no porch light to show them the way home.  The wind is rough, the waves are high, the night is dark and they are oh, so alone." I try to be here, but sometimes I wish I weren't.
     I did hang some tinsel on our little pot of Norfolk pine.

Nouce
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Reply by oldbat
09 Dec 2014, 3:41 AM

Dear Nouce,

So sorry to hear about Pablo's descent into confusion.  Based on my experience with Karl, yes there will be days when he will come back to you.  Treasure them.  I'm never sure when I go to see Karl, or he comes here, whether I'll be meeting my (almost!) intelligent, charming, handsome husband or my six-year-old son.  I have learned to cherish them both and enjoy the moment that he is in.   

Yesterday, when he came here, Karl managed to channel both.  We had our "senior" moments, when he was able to discuss intelligently what he'd like to do to celebrate "his" Christmas on December 24.  Then he regressed to his childhood, telling me, after I'd given him a tin full of candies, that he felt like he was six or seven and his parents were giving him bon-bons - and then proceeded to recreate that scene.  It was a charming scene and I had no trouble entering it, although I wasn't too sure what role I was playing!

When Pablo is struggling with the present, you will be his guiding light.  When he appears lost in his own darkness, you will be his guardian angel.  But, and I can promise you this, he will never, ever truly forget that you are his loved and loving wife.  

oldbat 
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Reply by Jimmie
09 Dec 2014, 1:33 PM

Cold morning, first one of the winter.  Sarah's in bed listening to Bruce Sprinsteen.  I just reread the latest posts and was reminded again of my good fortune in coming to know all of you. 

That's about it for today - just a little bit of a love letter to all of you for your wisdom, your courage, and your compassion.  Everything else seems superfluous to me today.  Just want to tell you how lovely you all are and wish you well.

Jim
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Reply by frustrated
09 Dec 2014, 3:27 PM

Goodmorning to all my friends out there. Thank you for your advice. Even though this is a very hard place to be it is nice to know I am not alone on this stormy night.

Yesterday I did set up speed dial for Gary. Unfortunately he decided to spend the night calling me asking my why I wouldn't come see him. To night the phone is coming home with me and I will take it back in the mornings when I help him with breakfast.

Jimmie, I wish I could give you a great big hug. You know we all love you for how you are. Even thouogh I don't know a lot about you, you just seem like family.

I wish all of you a good day with warm hugs.
vj
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Reply by Xenia
09 Dec 2014, 5:02 PM

Good Morning All at 9:00 a.m. on the Windy and Rainy West Coast of Canada:

I have been awake most of the night, winds blowing, plants blown over and over all noise from the heavy winds we are having.  Such is the weather report from the Wet Coast.

Just finished giving John his breakfast.  Had to give him his meds and his insulin and then breakfast.  Having a time to keep his glucose levels at 5 as he is not eating much protien even though I put it in the ostorizer, etc.  Had to give him oatmeal and a slice of toast, he ate 1/2 with a lot of peanut butter.  He loves his coffee and drank it all, now he is asleep.

The sad part of this morning is he asked about the nurse who gave him his needle and where was his wife.  He didn;t know where he was until later and thought he was in hospital, still asking what is happening to him.  Then I look after his toilet affairs and clean him up somewhat.  

The aide is coming at 10:00 am and I will help her with his over all clean up.  Have to do a quick job as the hospital bed is being delivered.  Whopee, around here it either rains or pours, nothing simple.  Everything at once and then I am scheduled for a visit from the Palliative Care nurse.  Son and son in law coming over at 10:00 a.m. along with the delivery men to move John's bed and take away my queen size mattress, etc.  Looks liike a busy moving day.  Will have all the neighbours wondering if I am moving.  

Jimmie, I relate to your days and nights as I do with all those whose spouses, other halfs have dementia.  Where is the person we wed or knew a few years ago.  I refuse to look for him as it makes me sad, now I keep in touch with the new John and help keep his anxiety down.  The hardest part is looking into his eyes as they look so bewildered and child like, asking me to do things for him, etc.

Well the wind is getting up there and I see one of my windows is a bit open and will have to close it.

All for now.

Xenia 
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Reply by frustrated
12 Dec 2014, 2:17 PM

It has been a hard week. I feel I am drowning in sadness, lonliness and guilt. I am still trying to adjust to the dementia, the guilt and the empty house. Even with family and friends, I am stil aone. Ok I will throw self-pity in there too.

Hope the rest of you have had better week.
vj
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Reply by Xenia
12 Dec 2014, 2:47 PM

Good Morning All:

Yes, I could not agree more with you VJ, it has been a horrendous week.  Getting the hospital bed in, having John adjust to it, getting things moved around and him being quite sick.  Kept telling him he had the flu as he insisted the cancer was gone, etc.

Then he started having problems with his sleep and waking up half the night, oh yes, also trying to get out of bed.  Waking me and asking me what time.

Well I survived that, good thing I had some down time with the care aide and ran to the locker room with our son and got rid of some Christmas things I will not need any more and can be of use to someone else.  Baked 3 Applesauce loaves for the Legion Bake sale, tried to do some clean up but will leave that to the ladies who come on Tuesday, Christmas gift from our daughter.  Whoppee the base boards get cleaned.

I was having some real bad days especially when John kept calling me someone else, wanting to sell the place and move..sure is a different person from a month ago.  So the changes go,

Winds were horrific last night, scared to look out on the patio.  It is 6:00 am and the wind just slowed down.  I know my planters with small trees rocked and rolled last night.  Wonder how my neighbour slept.  Good thing we are friends.

All for now.

Need a coffee and wish for a good day to all.

Xenia 
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Reply by Xenia
13 Dec 2014, 3:33 PM

Good Morning To All:

Well, it has started more rapidly than I expected, the wandering and waking in the evening, unexpected calls in the night.  Yes, John's dimentia is moving in a suttle and new manner.

Yesterday his lucidity was excellent.  I thought no way he is ill, then it started in the evening, the calling of me, getting up all night to go to the bathroom, why does my finger hurt, how long is this bed and how wide.  I spoke to him at 3:00 a.m., then 5:00 a.m, slipped out to the sofa shortly after 5 and grabbed a quick wink and the lights went on in the second bathroom, he was there, I asked him why, I had to go, yes he did on the floor, but that is a general clean up. Back to bed and fast asleep, it is now 7:30 and I have to give him his meds but will wait, what the heck an hour difference.

I write to you as I was shaken up.  Yes, I expected changes and after reading can understand now that John has vascular dimentintia, from reading Mayo clinic article , will check this out with drs.  He has all the sympstoms a man has with his types of illness, apparently all the ones he has helps him develop dimentia.  His diabetes is also a facctor not to mention the heart problems, etc.   So we carry on.

Have grandson and son in law coming over shortly, they will be taking my queen size bed, mattress and box spring to their home as I have had to change beds to accomodate John;s hopsital bed.  We had full rails on his bed and changed them to half, now wonder if we went too soon as he begins to wander.  Will have to look at a better lock on the condo door.  Fun begins.

All for now.  Take care and thanks again, FRiends.

Xenia 
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Reply by Nouce
13 Dec 2014, 4:27 PM

Dear Xenia,
     My heart goes out to you.For strength, and a tear or a laugh for each moment. I pray for the help you need to come quickly and without ambiguity.

Nouce
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Reply by oldbat
13 Dec 2014, 5:20 PM

Dear Xenia,

So, so sorry to hear about these new developments with John.  Wish I could give you a big HUG in person, but send this virtual one instead.  So glad to hear that you have family to help you both through these difficult moments.  

You are a monument of strength and a testament to us all.

oldbat 
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