Thursday 30 January 2014

January 30, 2014 There is always this gap......

Last night ...'  we had just picked up our mail, and i mentioned to him  that it was from revenue "Quebec'  - and also mentioned it was income tax time .  Then when  we went in to say goodnight to our friend down stairs near the mail boxes she asked how we were and what's new etc... and then...we spoke about income tax etc....and    that Mac used to do the income tax for the whole family, plus some  our friends, and also was a volunteer to help people at the CLSC who didn't know how to do their income tax..' with that he really perked up ... The words "income tax' is  i think is what spurred him on to saying "there is always this gap....he was searching for the more words and came up with ' I really know there is something i do ...and somehow i can't put my finger on just how and what i should know; it's strange and i know there it is there...



Our friend Muriel looked at him and said ...'oh'...and he continued until he had repeated the same words over and over..so decided time to leave, as she was beginning to look too sad, plus it really was time to go upstairs.



.tonight it was "where are the others and when i said, we're IT  you and i...he was looking around, and saying now where is Janet..  my wife...Well that was news...as he doesn't always associate the word Janet as his wife's name, so i was happy to say, i'm janet your wife....Oh that's good says mac...well it sure is..

we've had a great day, and i reminded him, it was sunny we went for a walk right down to the lake....we've had tea and carrot cake at the Teapot...(our local over 55 club).  It was such a change after the grey and cold windy day yesterday...we could have stayed out forever...but then we really bundle up...I make sure we're warm, and we take our time, and walk slowly and enjoy.  BUT  sadly he didn't remember the day, and the fun we had - the jokes he just says off hand - that make me laugh ...when we returni remember none of them.  (damn)



My friend reminded me of one the other day, apparently i said to him "mac you have lost your memory, that's your problem...he answered, 'memory - what's that'///  and so it goes...we have to live in the present, in the moment and sometimes it's not easy...but there it is...so g'nite...

Friday 24 January 2014

January 24, 2014 How did we get here....

Today the old question came up again, "how did we get here??" asked mac, first thing before we even had our breakfast....this question along with, "have you seen my mother"  'i don't have any money,"  "where will i sleep tonight"??  i guess are the 4 most commonly asked questions by Mac...as his memory is such that those questions are so important, and so they should be, imagine, never knowing where, how, who and why you are in a place.  So i always try to make sure to answer them no matter how many times he asks, and of course 'how did i get here', could be brushed off, by saying "by car',  but i would hate that answer, and so i tell him the story ...."we moved here a few months ago from Chateauguay, we had a mover move our furniture here, and our children, Les, Gaye, Valerie Glenna and Maureen ...all helped to set up the house with our furniture, and then les drove us over here in his car....'  that usually settles the question, occasionally he wants to know 'why did we move',  the answer is simple, we had stairs in our house - and had to go up and down constantly, so this way we have an elevator...and my knees are now much better, and you will not fall....' , this settles that question too...



But tonight he asked," are you going to make sure my slippers are there???"  This as he got into bed, which made me kind of nervous...as a couple of nights ago .....he got up, put on his slippers at 2;30 a.m. and walked around searching for a way out...i managed to convince him to go back to bed, but then he was up again, putting his slippers on the wrong feet, and practically tripping along...and i could not convince him to get back to bed...he was on a mission of some sort  had to get out...and while i was wondering how to get him back to bed, and at the same time, thinking should i phone the emergency # to get the night nurse up here, yikes, he managed to get to the front door, and out in the hallway....in broad daylight he gets lost...but in his dream like state, he was quite confident..tellng me go back to bed, leave me alone - go away....i'm going out....



so there I was bare feet  in my nightie, with the cell phone in my hand ...trying to remember the special # to call...as I trailed after him, - also not wanting to talk too loud and wake up the neighbours, and at the same time, loud enough for partially deaf Mac to hear me...'saying come back, and mentally saying what the hell is that number...finally remembered.  and called - no one came....did it 3 x...by then we've walked around the hallway...mac contemplating the elevators and trying to open them with his hand...trying the fire escape doors, with me pleading him saying go away...looking here and there trying out peoples apartment doors, but deciding no  can't go there...and then i said 'you know you might as well do this in the morning, there will be more people and we can go out with them....surprise, he agreed and readily came back to bed...although by then it was 3;30...i had been whispering - pleadng, talking louder, and freezing....and vowing to myself that the people in charge were going to hear from me in the morning...



BUT, when i got Mac back to bed and was putting the phone back on the hook, realized, i forgot to press 'talk' after i dialed...oh well can't remember everything...and the emergency was all over anyway.....



so the idea of slippers, and where are they when he asked, gave me a good idea....move the damn slippers so he can't get them on, .., although last night was great, he slept all night...but one never knows...so maybe if he can't get the slippers, and decides to follow up on whatever his dreams say, trying to find his slippers may slow him down - but who knows....this is one of the signs of  the big A. they can move in their sleep - their hands or even their  bodies, Mac is a good example of that....  while healthy people or people without the big A. are not able to do that in their sleep....and most people do not walk in their sleep if they are healthy...So think i'd better get to bed and get some sleep just in case I'm required to do some night walking...i need my sleep ...so g'nite...

Tuesday 21 January 2014

January 21,2014....Shall we ......dance

Around 9;00 p.m. after a rather busy day Mac is as usual very tired, and as he stood waiting to do whatever he has to do before bed, he looked around saw me and said.. 'well shall we," and of course i waited to hear him say go to bed, or brush our teeth...and he said DANCE!!...Well that was a surprise, and took me back to the days of when we would whirl around the house with one or the other of our many grandbabies, and that's what we would do and sing...Shall we dance, on  bright cloud of music, i would just love to see him dance aournd with the baby and we'd sing and dance all over the place...so i asked him - do you remember that song, that we used to sing to the babies and dance to it...He looked a little perplexed and then said, 'well yeah, hmmmm," so I started to sing the last line.."on a clear understanding that this kind of thing may happen shall we ....and he sang out Dance, shall we Dance shall we Dance...it was so much fun to see him really get it.



Actually we've had some really up days, and of course the down moments as well, but mostly up, as he has enjoyed a couple of warmish days where we've been able to go for a fairly long walk, - walking, how important that is, i wish i had brought that up today at the Alzheimer's Cafe, where we went to hear a specialist in research of Alzheimer's  , and whose name has promptly escaped my mind at the moment, it was a really good meeting - many questions and only some answers as the big A..is such that more and more people are aging and more and more people even at a young age are getting that dread disease....and when mentioning prevention, he listed Education, Activities, physical Activities, Socializing, - maybe then i should have stressed 'walking' . 



In any case he said that of people who are obese, smoke, have diabetes at least 50% will get dementia...Dementia being the umberella title for Alheimer's disease (which is the leading form of dementia and accounts for 50% - 75% of all cases0 Vascular Dementia is the second most common and other dementias include Vascular Dementian lewy body Dementia Frontotemporal Dementia Creutzfeldt-jakob Disease and mixed dementia (usually Alzheimer's disease combined with Vascular Dementia)



After listening to this i'm sure everyone there was a bit worried and then to add to the worry the specialist pointed out that memory loss can even be caused by over the counter meds such as muscle relaxants, yikes i take that...plus such illnesses as sleep aneepia, or whatever...and concussions etc etc...if we weren't worried before we went there i'm sure we were a bit when we left.  But it was understood that these memory losses could be prevented and even aleviated by peventative measures..even by drinking some red wind - hmmm....apparently...but he didn't give the dosage..



Anyway, after the lecture and the listening to the pianist , eating delcious fruit, cake and drinking coffee or juice, mingling with people - some of whom we now know...we met a person from the A. association who is interested in having the Alzheimer's patients and caretakers do a virtual  memory box project..sounds like an intriguing idea..which we will look into later...altogether though an interesting day..Mac at these type of activities is rather leery of someone perhaps taking our coats, our wallets? hmm...as we mingle with others so he wants to make sure and sits quietly taking care of them, but  somehow he does attract others and therefore even sitting there we did get to talk to others like himself or perhaps not quite as far along in the disease as he is..but almost ..and one person who is a daughter of a lady in our building...she is involved in a 'preventative research at mcgill  for those who may possibly have A in their future - because of their relationship to a person with the big A..' since her mom is here, i will be able to find out more about this later.



Mac after we were home forgot all about this meeting, and as usual lives in the present...i wanted to record it all as i'm sure there will have to be a cure and it will have to come soon, so this record of someone who was so so "with it" and now is no longer on top of things...won't be able to be cured but how we live and try to keep memory or memories...i'm sure will be of interest - so 'shall we dance....??  or shall we just close our eyes and go to sleep...g'nite

Tuesday 14 January 2014

Tuesday, January 14, 2014 No it's not my birthday....

Well yes it was, it was Mac's 84th birthday on Monday, January 13, although we celebrated it with family on Saturday, January 11th...I haven't a clue why, but he would not accept the fact that it was his birthday, in fact it was only last night when one of our friend's called and said, 'hey, happy birthday mac, that he said 'well thank you very much'...He got emails and phone calls and of course i wished him a happy birthday..but he'd just laugh or say, i don't celebrate birthdays...so i said it's your birthday you are 84...he said ' no i'm not 84, i said how old would you like to be...he laughed and said 15...well birthdays are just a number so why not choose any old number

Today Alice one of our table mates downstiars..asked us to pick up couple of mars bars for her when we were out, so when we brought her the bars, she thanked us, then said, 'i want to speak to Mac, - so Mac got close to her as she has problems seeing and hearing...she said...Mac - happy birthday...he said ' oh is it still my birthday, and laughed...', i told her it was yesterday, but not to worry it's always nice to hear Happy Birthday...then I had to go back to our apt. to get her some change, left Mac with her...and in a way it's good she can't hear well, as when i came back Mac said, "i wonder what's keeping him, and then he saw me and said, oh there he is...That is one of the strange things...Mac constantly gets genders wrong...it doesn't seem to be based on looks or anything, it's "he" most of the time....for everyone...must check this out....

Another constant is his thought that he is very poor - has no money - and wonders where he will sleep ..today we went to the bank, and i told him here is your bank balance, you are doing very well...'oh this is our bank, and i have money???  Right and i go through the usual routine, you worked for CN, you paid into a pension fund, and now you are retired you receive your pension evey month through the bank...one of the good things when i say that is to see just how happy he is, he smiles and chuckles and says, 'gee that's terrific, i always worry, and think where can I go where will i sleep, i have no money...i love to hear him be so happy...but then I realize how sad it must be to be thinking - where will i sleep ...

I'm not sure if i mentioned that i received a  gift or what i consider a fantastic gift, it is a tape that a friend in Australia, made into an mp3, and sent to us...it is a tape Mac made as a kind of letter as he and our friend owen communicated by tape, talking to each other way back in 1987.    i am so thrilled that owen saved the tape, and there i can hear the man i married, so articulate, so i think, amazingly understanding and commenting on world problems, and happenings of the day...then to comment on local and personal events..t'was such that it made me weep, but i'm still so happy to have this  tape, don't intend to play it again for a long time, but just to know it's there, it's a souvenir i will treasure.

He has  been having some problems during the night with dreams that keep him hunting for things, and talking  moving and very restless ...which of course means problems for me, so since it's not  a sure thing that this won't happen tonight...i'm off to bed, and hopefully we'll both sleep...so g'nite.

Tuesday 7 January 2014

Tuesday, January 7, 2014....Who are you????

We, the readers of my blog, and those who know about Alzheimers Disease are very much aware of the disconnect that happens when someone with the big A..has the sundown syndrome...and sometimes it is really too sad for words, and at other times one can just glide through this time with vague answers to crucial questions like 'is my mother still alive??? or  "think I saw my mother, did you see her", I've learned to answer these questions with " probably though most of our families, yours and mine, have passed on ...' or 'hmm maybe you did see your mom, though no, i didn't see her'...but when Mac asked me today, 'Who are you...'i was tempted to be funny and say, "who do you think, I'm sophia lauren..but of course I just answered, 'janet', and mac, answered, oh yes - that's right...and on we went for our walk around the building...although we actually did get out in the cold earlier, and did some walking and  some shopping at the mall next door...

Can't say enough about how well the sidewalks are cleared and salted here in Lachine..for sure they look after all the oldies around here...and many of them were sitting in the mall, doing their thing, buying lotto tickets and scratch tickets......but we do ours by walking up and down and getting some shopping done...and then congratulating ourselves for bundling up in this 30- weather...

I have been wanting to write about all the positive and seeming improvements I see in mac, since it's the beginning of a new year, time to contemplate...even though two nights ago, he sat at the side of the bed from 12;30 to 2;30..hallucinating and then having to check out the hallucination by putting on his slippers, but thankfully not moving away but just sitting..when i told him please get back to bed, i was told in no uncertain terms to shut my eyes and shut up!!!...he finally went to the bathroom with my help, and was asleep by about 3;00 a.m....one good thing, we did sleep in till 9;00 a.m.

o.k. so the good things or the postive things that show me that he is improving in some ways...
he recognizes our building, and sometimes knows to turn into our front area ...he can still handle food with a fork, not perfectly but he is doing o.k.  (cannot use a knife - must have his food cut up) - enjoys music especially jazz..some rock, and of course classical ...actually watched two programs on t.v. lately...and seemed to be able to get the gist of parts of Downton Abby, a couple of the jokes on 'the Big bang Theory...so that's neat as usually he just wants to get in bed and only will listen to a bit of the news...so let me think what else...Well he still knows when to go to the bathroom, though needs help at times ...not only to figure out his clothing, but to know just where is our bathroom  but the good thing is he does go there..he helps to dry dishes....carries the laundry in the laundry bag to the laundry room...helps to hold it open as i load it from the dryer...Still makes some really on-target jokes...which even today had me shreiking with laughter, but one of the bad things about myself, is i am not so good at remembering them...must bring a pad and pencil with me...i won't go into my bad memory...and best of all in terms of mac's memory when we lived in Chateauguay, for two years at least i put his boots on in the winter...now he can do it himself...wow...

latest news is that vitamin E is supposed to be helpful in those kind of areas,  dressing, and undressing..so that's the first item on my list for tomorrow....along with more coconut milk...and the last item on my blog tonight will be how good he is at laughing at himself...looking at himself in a picture , he will say who is that old guy..and I say i think it's you...noo that's me?? and then laugh and say - what an old geezer - so that old geezer falls asleep at 10;00, but then often wakes up looking for me, so this old geezer will join him..g'nite...

Thursday 2 January 2014

Thursday, January 2, 2014 You'll just take off in a car......

As I was giving Mac his bedtime pill and patch..all of a sudden he decided "no don't think I'll get in bed yet", surprise, as that's where he just loves to be at 9;45 p.m.  I said, "do you want to listen to music while i go on the computer then....well yes that way I can check as you will just take off in a car - and leave me alone. " Well that was sad, as that's exactly what I did today for all of 10 minutes,  - surprise he remembered, and kind of connected....actually he always wants me to leave him alone rather than have someone stay with him  - and i do at times but only to go to put clothers in the washing machine nearby in the  hall way, but i guess this was too scary so I won't do it again.

one of the friends through the A. assoc. that meets with me is having big important problems re her mom with A. and so i replied to her email - she and her bro  want to do what Mac and I have done for their parents move to a place like this in Conn. but apparently doesn't seem to be a similar place ...this was my reply

Sorry about your mom, this is so hard on the family and of course
particularly on your dad and then on you and your brother as to just what
can be done ...today my son came to install a door hanging thingie he gave
us for Christmas so that i could put all our boots and shoes on it - taking
up less space.  works pretty well,

while he was here took advantage and went to get our grocery order as mac
has a cold and the temp. is really too low to enjoy a walk....would have
loved to just dwaddle around the grocery store but i was on a time
limit..what a drag running around with my stupid list...then when i called a
taxi they said 15 min wait was the least...so walked home fast and
freezing....but better than having not going  at all i guess...

 this is the problem for my son as well as i could tell that he didn't like
having to make me rush...he said 'will try to do this more often so you can
get some down time ...' but i know it's not about to happen too soon, so not
going to get excited about it, lucky he was here today..anyway...those are
the kind of things the spouses and children go through and that's just a
minor problem, the major ones we won't go into here....

What a sad diseasse this is and how it does impact the whole family..but.on an up note
a friend in Australia sent us a surprising gift...he and my husband used to
send taped comments rather than letters to each other - anyway, he managed to
put a tape mac made in 1987 on an mp3..and sent it to us by email.it is so
remarkable to hear how articulate and amazingly on target and so
knowledgeable about world events, as well as  in Australia canada and the U.S.
mac was at that time  and then ending with our purchases of cottages up north and
upcoming birth of one of our gransons...i just wept inside, but it's a
wonderful gift and certainly a wonderful souvenir of a happier time....

Well i sure hope there is something that  can be done to make life easier
for your dad mom and the family...it's really imperative...

have a happy new year ...enjoy the good moments...

and that's the most important thing for all of us in 2014 enjoy the good moments...even though the memory of my going was not a good one, it is a memory so it shows he can still be on target..as today when the nurse came to take his temp.  he noticed mac's pic where he is posed with his lacrosse stick -in his lacrosse stance etc...and said, " you played lacrosse that game is worse than hockey...'  Mac did not make any rebuttal...which really shocked me as that is a real constant memory - or was - usually he would say 'no way, in lacrosse it's different etc etc...he just said,'oh is that me'.....so in a way - missing me was a good moment...he is in the here and now still...so will be happy to see me come to bed, and i'm on my way...g'nite...