Saturday, June 29, 2013 Where is my fork?

Today for a little bit of a change we decided to eat in the Residence Dining Room..we do this on an average of  once every second week..I have found that Mac seems to enjoy having all the people he kind of knows - sistting at the various tables.  We usually sit with a 92 year old woman and her friend who is in her late 80's the 92 year old is in great shape - always helps a couple of people with early A. - one espcially who often forgets the way back to her apartment, this 92 yr old checks out if this lady wants to be taken back to her apt.  always saying the same thing...she can't remember where she lives...so i take her to her home.  There are others in the same position as this lady, Mac for sure never remembers where we live, has a vague idea but is dependent on me - and often when i go to do the wash - the laundry room is right across the hall, he'll say - don't get lost, a kind of serious joke...Soooo

When he was eating dinner his fork was right on his plate...he started to pick up a spoon to eat...the 92 year old said arnt you going to use your fork??  mac answered 'where is my fork"?  This is not uncommon for him, he can't seem to see a spoon or fork in his plate..and it's almost as if he is joking, but he is not.  His visual perception is off - plus his memory of if he had a spoon or fork is also off base.  He also is not able to write at all, I used to kind of encourage his visitor from CLSC to  kind of have mac write his name or try to follow lines...now tonight at dinner - when he said where is my fork...a kind of light went on in my head...that is probably why he had such a hard time with his visitor last time, and also with our friend who often stays with him when i go out.  They have been trying to get him to write, or just draw a line, or tell them about pictures, give the name of our cat etc. 

These are now all impossible, so i'm going to really have to put a new program in motion for his visitors (as I call his care givers)  and that is- to put cd's on, talk about music, let him listen is the music loud enough - too loud etc.   and  have the person just talk about himself or herself  and perhaps ask his opinion on simple things, i.e. which do you like cats or dogs...discuss sports they may like - also try to go for a walk in the little park in back...i had been wondering why he has been saying 'i am useless, I'm a dud' this also happened after we went to our lawyer's office Wednesday, there the lawyer kept insisting that he write his name...again this is impossible - mac cannot do this.

So we see mac's  memory,and  his perception certainly are disappearing but his sense of humour remains; and when he couldn't find his fork, he managed to joke about it, when he couldn't follow the conversation and comments he said, ' so many words, but how much wisdom"  this really set us laughing...although..
 in a phone calls for example with Les - les asked to speak to Janet...mac said she is not here..that set me back in my tracks.as i was right there...and even tonight, he said 'i wonder where janet is"...i put up my hand...'i'm here,'  He looked at me and laughed and said, "are you sure you are Janet'...when i answered, think i'll look in the mirror and check, this  made him laugh..so the laughing, the humour and best of all, his love are still there, so i'm going to concentrate on that and not think about tomorrow but enjoy the now...a tall order but i'm going to have to do it ...so g'nite

Wednesday, June 26, 2013 When will you be back...

Going away for respite or time for myself always causes a problem of some nature, but if i can control the timing it can be handled fairly well.    the question i always hear when i'm going  is 'When will you be back?" Really it doesn't matter as it is always too long away, and always the reason to leave is forgotten and so although today his visitor or respite person told me he was not a happy camper while  i was gone, the good thing he is always happy when i return...also often   forgets  that i was away. 

Actually leaving Mac always causes me to be sad as well...it is rare that i leave feeling - hurrah, i'm on my own..but it does happen if i can manage the leave taking well...and he is fairly content.  Today i decided to go down right in our building and talk to one of the ladies who is quite "with it" so to speak..as so many are not - but something she said caused me to leave feeling sad but for a different reason and that is...what many people feel when they come to a place like this....a residence - ie -  where support has to be given to the residents. 

This woman was talking about her family..apparently she had lived far from her 4 children for over 40 years but when she suffered heart problems from a stroke, they wanted her to move closer to them.  Thinking that this was a really lovely way to show their love, i assumed that they then visited her often...well what a shock...seems one of her two daughters cannot visit, just too tired doing volunteer work with Alzheimer patients in a hospital...the other cannot visit too often as she drives to work and on her weekends she doesn't want to drive....her son lives too far away and is not well, and her other son....are you ready for this...can't visit, as he hates to see his mom in a place like this...Thankfully this woman is well adjusted, has many friends here and enjoys the activities...and being catholic gets spiritual support from the priest and mass every Wednesday...

.BUT, this confirmed my own thoughts about how many feel about various illlnesses - but especially Alzheimers...i have one friend who flat out told me, i would never want to be in a place where you are - another friend whose husband has the big A but still lives at her own home - with help - tells me that many of her friends will only visit when her husband goes to the day center...others have told me many friends never visit anymore...it's as if they feel A. is catching...and they fear being near the person with Alzheimers...in my  own case i have a person who tells me knowing how mac used to be, she can't take seeing him like this it causes her to cry...so she will, of course never visit anymore...

so I've learned how hard it is for family and friends to support and visit the couple who are in our position...to see all this every day, among many of the residents here, who by the so many here don't even have anything wrong, just are old and at times a bit infirm...never visit or have visitors

the same friend who told me she would not want to be here, also when asked if i could bring my husband when she invited me said No...then when i went (i thought it was because we were playing scrabble and he would be bored) she said to me 'gee i felt bad to say no to you' actually i said, ...he really can't visit as he cannot take all the stairs to your apt.  (no elevator in her building) But now i don't want to go through making her feel bad, so forget visiting with that one anyway. 

Thankfully, there are the inspiring residents, who may only have a few visitors, but enjoy like the woman with the 4 children who do not visit...the woman with rheumatoid arthritis, who can not move - always in the same position, cannot read or turn pages of a book, but who is such a pleasure to visit, never complains, and appreciates her son who visits every day...maybe that's why she is so up...another son never misses a day yet - his mom is so ill and complains most of the day...so there are also inspiring visitors....and residents...and I'm learning to realize we are certainly not all alike, and therefore will try to take a page from the inspiring residents, and inspiring visitors...and for me the most inspiring is my own husband, who for the most part has hung on to his sense of humour...is still loving ....and loves me so much that the question, When will you be back....should make me smile and be happy that i'm loved and so much so - he wants me back.  g'nite

Saturday, June 22, 2016 What happened???

This morning we deviated a little from our normal routine so I could go to the inhouse hairdresser for a bit of a hair trim...and since i thought Mac should at least have his second cup of coffee..brought that down to the hairdresser so he could drink his coffee while he waited....All went well, and as we were going back to our apt. on the elevator I had my purse in one hand and the empty coffee cup in the other therefore was NOT holding mac's hand..but normally that should not have been too important...and so as I walked off the elevator on the 6th floor and continued on to our apartment, i turned to ask how he liked my haircut...and shock...no MAC!!!

Well i raced back to the elevator door and looked all around the 6th floor and realized, he probably didn't get off the elevator...so  tried pressing the button in hopes that the one he was on would come up, no luck so zoomed down on the one that did come up...raced to the main desk to see if anyone had seen him get off the elevator, Elena the wonderful receptionist..said, go back, take the elevator and stop at each floor.This was  awful, i'm claustrophobic in elevators at the best of times but with sick feeling, and almost in tears looking for mac, i took an elevator (there are only two in our tower) stopping at the first, the second the third, and finally the fourth, when the door opened there he was...saying to me "hi what happened',  well, talk about happy days...i was so happy i was crying...i had visions of him just staying on the elevator and going up and down but i guess someone got the elevator to come for them on the 4th, and he just stepped off - WHO KNOWS, cause he doesn't ...

.learned a lesson there actually the second lesson, as i let go of him to carry a couple of items to the cash in the super market - thus not holding his hand, and when i got to the cash turned around - and no mac, but calling his name at the top of my lungs giving everyone within the area, i guess an idea some little kid was missing, imagine their surprise when i spotted him in the cheese dept...and raced over and said, quietly this time, come on mac i'm at the cash....."oh that's where you were, i was looking for you"

So life is, never boring, today,  we had to go to the Vet with the cat....i had to run around and finagle him,  the cat that is, into the cat bag ....saying, wow Mischa, stop giving me problems,  Mac added 'yes she has enough problems with ME...well that's o.k. rather be with both problems, mac and mischa, than without...so g'nite.

Thursday, June 20, 2013.....I'm just a nothing.....

Breakfast over, Mac all dressed and having a second cup of coffee, I'm trying checking the phone book to find where a Vet is in this town of lachine, so that Mischa can get his shots....when Mac says - i'm just a nothing...I can't do anything, .his head is down, his eyes are closed....This is so heartbreaking....I quickly run over to him and say, what do you mean...you are great, you've done so many things...'no no, i'm not good for anything, i should just jump out that window...'   Well this is not a new story, but it has not appeared for quite awhile and really sets me back...he continues to get into a blue funk,   So i say "look you are fine, except for your bad memory, you are able to have a good life...look out the window at the lake we'll go for a walk over there shortly....

Well no he was not to be swayed, he was a failure, had nothing and worth nothing...until i went over the facts...you are a father have 5 lovely children, they all have great kids, and you have $$$ in the bank. Well that brightened him up and we were able to have a good conversation about how he got his $$$...where he worked, and so as we went over his life, and pointed out that not many who live to 83 could say as much..."Wow says  mac, are you telling me i'm 83....yes and I'm 80 going on 81, we're old fogies....but we can still walk, have friends over and enjoy life'...he perked up, but i wish i could put his face on camera when i said,  and we have our little Finley...she is right here, as I showed him her pic on our fridge...'how old is he now said mac with his eyes shining...16 months i replied or maybe 17 months.....i can't believe it - she runs circles around us....she is so terrific...and he looked at her his blue eyes bright and shining...and when i said, we will see her today.....well as i write this i have a lump in my throat....and tears in my eyes...

it was just wonderful, he picked up and was so happy, in seconds....how did a sweet little baby do this  - without even knowing it - she has made such a difference to him, it's remarkable....he said, she will come with her little finger pointing at me and try to say Granmac...i said, yes that's right...so we should pick up our socks now and get on with the day...

.i don't remind him we have exercise class, as he always goes in with a dour look, saying look at all these old loonies, but then he gets into the act and enjoys doing the exercises - which we do on a chair....to the music on great tapes of Frank Sinatra and other oldies...and with other oldies...so these two oldies will get going  bye for now....

June 16, 2013 Father's Day...where is eveybody....

We celebrated our Father's day yesterday....so today mac was saying 'where is everybody, so we will meet some of the friends here in the building when we go for dinner in the dining room - in the meantime;-yesterday...

We had a wonderful day - with all bringing food that was terrific, and conversation that was fun so good for us all to connect - and of course especially fun was seeing our little great grandchild Finley....mac has no difficulty remembering this sweetest baby.  Funny it just so happened that at one particular time all five kids were sitting near their dad, so decided that was the time to give him their father's day cards and gifts...but just before that i had given my house keys to my son in law so he could go to our house and fix a cabinet door that was hanging off...i felt that it didn't look good as we are now selling our house...BUT, this put mac into a real tizzy worrying about him having our key especially since the key to our apt was on that ring.  So all while we were saying oh look, what neat pants, hey look your favourite shortbread cookies etc.  all he could concentrate on was when was Bill  bringing the key back etc. so finally Mac finally had  the key and all was well.  This was kind of sad for us to see  but as one of the kids usually say 'it is what it is' and we all concentrate on where he is at this time of his life and enjoy what he enjoys...i.e. the baby, his food, the weather and also let him chat in his own way. 

 

On the way in to our apt. we had all kinds of bags to carry,  i was trying to get him to hold one of the bags but finally as he was having a problem to hold it, i was able to put it with the bag i was carrying, so he said 'o.k. junior will not have to carry anything'  not so funny but his tone and how he said it  sent my daughter Gaye and i into a peals of laughter and a funny hilarious mood.  mac sometimes says things in such a funny sardonic  way, he always had a kind of off base  and weird sense of humour, and still does...which i  love. 

 

speaking of which I have discussed mac and his ways with a friend whose husband is in the same position,  she called me just last week and we talked again, about our husbands... it's kind of strange these conversations i seem to have..with women and a couple of men, who have moved their husbands/wifes into a safer and more helpful place to live, they then visit periodically i.e. either once a day every couple of days or weekly...since placement was definitely what i had intended to do with mac...they of course, always ask why i decided not to do so. i tell them two things, one...if the positions were reversed, and i were the one in his position, how would i feel being separated - and two, and the most compelling reason is that when i did try to do that, i.e. bring him to a separate place, when i walked back in my house...it was completely empty for me...it was not my home, my home is where my husband Mac is, and so...where we are - is HOME.  it means that being with him means more to me than the house, the place, and the people where i lived ; we had a fun and good life there for 50 years, but it's time to move on,

 

  he is still without a good memory, does not understand for the most part what's going on, thankfully he is still fun to be with, walks with me every day, enjoys my cooking, and we have made friends (though for him old and new friends are new friends every time we meet) here in our building, also we still have a social life with friends and family.  This is sort of disconcerting and kind of puts the people we meet who have separated from their spouse in a position where they feel they have to explain and explain, but as i told them, everyone is different and every case is different...and also when things get too hard for mac to handle for the most part and where he needs more attention than i can give...then he will be moved to the second floor (lock in  area) and i will be able to go down several times a day to make sure he is o.k.  But as i always say, this is my choice and though it's not perfect, it's the best thing for us...and also a few others that we know.

 

So now it's on to dinner in the dining room with our new neighbours...g'nite.

 

 

 

Thursday, June 13, 2013 You are not JANET

Tomorrow is a special day, special in a couple of ways, the first being that it is our 61st Wedding anniversary, the second is that we're supposed to go up north for the day.  Two things that i've always enjoyed but it's kind of hard to enjoy the first one - i.e. our wedding anniversary when Mac doesn't even believe we are married...Tonight he said, what's your name?  I told him - Janet - no says Mac   You are not janet...that's my wife's name.   So to just get off the subject of my name, I asked him his name, -Gordon or Mac ..he answered quickly.  Right i said and you are going to bed now with me, I'm Janet...Well, said mac, if you say so...i guess you are, how come i was away from you and didn't know you.    We went into our usual discussion on his memory loss...

This is usually the case when he wants to know where and how come he never sees his mom, we talk about memory loss and how he can never remember when his mom died as he has this problem  memory loss -

I have found that to be perfectly honest - that he is fine, except for his memory - seems to make him feel better about the whole deal....because even though he has lost weight, sleeps a good deal, cannot focus on reading, has no interest in newspaper and hardly any interest in the news, does not know his kids - how many he has or his grandchildren, with the exception of Finley...he never questions this or feels sad about it, so we concentrate on what he likes, the lake, the beauty of nature, the fabulous light through the windows of our apartment because there are so many windows...our cat, mischa - and the love hate relationship he has as the cat is not a cuddley cat, in fact licks mac's hand and then bites; in fact he really does seem to like me as a stable person...one he depends on....

Since tomorrow is our anniversary, i'm concentrating on what he said to the person who stayed with him from the CLSC, when i returned from my time out yesterday...because when i came in the door, he said,

OH GOOD, THERE SHE IS, AND TURNED TO THE WOMAN - WITH A SMILE, SAYING - THIS IS MY WIFE....the woman who was looking a little frantic, said, yes - isn't that good now you don't have to worry, she's back.....

So he knows the real me....i'm his wife, and always will be there whether he knows janet, or at times doesn't i know him and that is what counts....so it's happy anniversary for us  and we're celebrating in my favourite  place, yay we're going to the lake, g'nite.

Monday, June 10, 2013 The speckles are really beautiful

We have had some great weather especially today, and so while walking and talking Mac said 'the speckles are really beautiful'...Well that took a little while to figure out...but then i followed his gaze as he looked out over the lake, and realized, the sparkles...the sun makes the lake have sparkles on the waves and truly it is beautiful..but i kind of like the word he thought up, speckles....this is happening off and on, as he has to search for words....sometimes it's so difficult that he says 'oh to hell with it" and drops the subject he was trying to talk about.  Familiar words fade away and come back for example when i said hang on i'll get  your kimona, he said 'what's a kimona'  - he hears that word every morning, but today it was out of his memory, so that was his word speckles, and also the ducks were hisseling, don't know what that was supposed to be, but also kind of like that word too....

The ducks were doing that yesterday on our way to church, we walked along the lake took us about 45 minutes to get there, but rather than leave mac i suggested he come with me.  He is not keen on church, but as i pointed out, he forgets so quickly just where i am, and since he can come with me, he might as well...why sit there getting angry wondering where I am  when he can be with me..

 he agreed which was great  i was kind of concerned as i was also going to leave him around dinner time,  to see The Rolling Stones (t'was super by the way)...and would be away all evening...a first - can't remember the last time i was away at night... Deb his caregiver for the night was great, and so when i returned home at 12:30 or so, his one complaint was about the cat, he was kind of upset, and i guess worry about the cat was his way of getting some of his frustration out, he was sure the cat would get out of the house somehow.  Deb said he also was concerned that the bed and that room was janet's  so she couldn't stay there..hey that's fine with me. and Deb.

So it's back to normal, this evening, we had a birthday party concert in the Activities room listening to a woman sing with a karoke machine , and it will be back to yoga lesson in the morning...never a dull moment for us oldies so must get to bed, g'nite.

Wednesday, June 5, 2013 The house will fall apart....

We have now been in our new digs exactly 3 months today...and in reply to an email from my cousin who said she thought we were doing the best thing for ourselves considering our situation I answered;

Too true it's great that we live here...although my friends back in Chateauguay seem to think that's not always the case, and are sure that i must miss the house - back yard, sun porch etc.  Well in some ways i tell them yes true, especially we loved sitting out in the sunporch every morning,  watching birds in the trees, especially cardinals,  haven't seen one since i've been here...then we'd go off for a walk, it was always soo peaceful and quiet...

 

Well it's not like that here but we can have it three ways....we go out and there are trucks  lots of people,  cars  ...horns.....lights  that's the 32nd st  way,  behind us going out the back entrance, it's a small park, peaceful and quiet, and small tiny birds very  few people passing by, ...as well we can be almost private as not many people take advantage of the back yard here with the garden swings  - so we go to the three areas at different times depending on our  mood...the trucks cars kind of thing are when we are going to the lake, we have to pass that one block,  then we're on a quiet street down to the lake, and of course the lake, that's the best.

 

Couple of nights ago, Mac woke up with one of his bad dreams, actually he doesn't really wake up  talks and walks kind of in  his sleep, and kept me awake for almoat two hours with saying the house would fall apart if he went back to bed.  Wanted his dinner, swearing that he had to do something,  and so on and on in a bizarre fashion, Finally got him back to bed and he went back to sleep immediately, i was not so fortunate and stayed awake most of the night thinking when will it happen again.  I had stopped the visitor (nurse)  who checks us in the night, but decided o.k. time to put that back in the agenda, also got a phone number to page the nurse just in case...so I sure don't have that in Chateauguay, so therefore a benefit for which i'm really thankful.

 

in a way i'm  thinking of every contingency; .i have found thats  the best way to meet the unexpected.  

 

Had  Mac's  visitor today from the ClSC, and was free to join my friend for an afternoon tea and discussion yea!!  A man visitor that was great...he seems to be very funny - Asked him if he wouldn't mind  speaking English. as Mac's French isn't the greatest ..he said, 'no problem - that will be just 25cents more.' 

 

Returned from my respite time - as it's called, and was met by Mac and his new friend, both very content...so hurrah for the CLSC - Social workers, and especially for Respite care givers....g'nite.

Monday, June 3, 2013 Sundown Syndrome - my wife has gone

This missing me, or not remembering me, and thinking I have died seems to be part of evening problems, as this is what he told the girl who helps him in the evening...my wife has gone , she died or just walked away...poor Stephane his helper,  tried so hard to get him to remembe ME....after awhile he decided that yes it's a memory problem and since I say i'm his wife, he might as well accept it, as he definitely likes me...and therefore, he's sorry he makes me so sad...tomorrow who knows..as this disease can make him so UP and so DOWN, and definitely does a number on me...although I'm not alone with this problem and one thing for sure I am not alone, I'm with him and rather be with than without...and that's the bottom line.

So i'm going to cut and paste some answers to another email from a friend to put everyone on the same page.....We definitely have moved, we live in Lachine at


Lachine, QC, H8T 3K4   phone # 514-538 3818

Tonight on our after dinner walk, i was just saying to mac we have come full
circle, we started out in a 3 1/2 on Barclay 61 years ago, and now we're in
a 31/2 on 32nd ave  Believe it or not we love our place, i will fwd some
pics of our apt. right now i'm looking out of huge windows all around, where
i see the sun going down leaving beautiful pink, orange and blue sky over
mount royal and the shrine in one window, over the st lawrence river in
another and over lac St. louis in another...it's super...

Mac has alzheimers and has problems with his memory big time, so we need
help, he has great help in the morning and evening, getting dressed etc..i
used to do everything and it was getting really difficult and tiring, also
all the stairs in our old house were unsafe - now we do not have stairs to
cope with and we have meals provided if we wish, i don't, as i do all the
cooking and love it still, but once a week we eat in the dining room, we
love the staff here, and the people we meet...

We have our house in Chat. up for sale, don't miss it, and the friends there
are still in touch with us...at times i miss our sunporch, but hey have
great walks on the lake, used to have to drive to the river for our walk,
but now we just have a 16 min walk and we're at the lake, shopping center
next door with my dentist there as well...library also next door, and a huge
park across the street (behind some great restaurants, ) actually we just
came back from a walk around that park watching volley ball, kids on skate
boards, little children on their little bikes etc. it's super for us two
oldies...

we're 15 min from Gaye in pointe claire, 20 min from the kids in Chat (Val,
les, and Glenna) and about 30 min from maureen in ile brizard....and we see
the kids every week or so..and on fb and phone ....11 grandchildren, one in
calgary that just phoned us yesterday ...and one wonderful great grandchild
Finley she is our star.16 mos.  we were showing her off to our friends from
Australia just yesterday....will send pics soon.

We still have our cottages up n. but gradually kids are taking over for
us...I MISS MY OLD MAC but this one is fun, and loving and i am here mostly
for him and my house in chateauguay is nothing if he is not there and so since he
can't be there, we are here and the best thing is we're Together...

Sunday, May 2, 2013 Where is my wallet???

Well it's the same old song or i should say same old words without the music, where is my wallet?  I think that my mom is no longer living - or is she?  I don't want anyone helping me.  Should we be going this way - isn't our home that way?  Where were you, no you didn't tell me?  and so on...and my answer is always the same, Mac, your memory is very short, i can tell you your wallet is in the drawer, but 5 min later you forget, but that'so.k. so i'll tell you again.  This may sound very mean and to the point, just as when i say your mom, my mom and both our families are no longer with us, we are old now and they are long gone...but we will remember them, your mom used to even live with us part of the time she was ill...we did this with her or that with her...  This usually makes him happy to know that we were there for her...and so our conversation goes on to a better and happier place.. even knowing that he forgets doesn't make him too unhappy as he hears that constantly, everyone seems to say they forget this or that.  When trying to avoid it, or pass it over, especially his mom, this can make him very very depressed and sad, so the technique is to make it part of life, i.e. dying everyone, has to live through this etc.  anyway, so far it's working for us.

BUT, what does hit hard is when he realizes how much he himself is missing, and why is it, and how can it be, it doesn't happen often, and i have found that taking him off his meds, which the doc thought might be o.k. was not, and so after 2 weeks of no meds...i.e. one type, i restarted, and have found so far this is better, and so on we go... Today, was a good day, in fact most days are...but it is wonderful to hear him enjoy and that pleases me...the sun, the sky, the clouds, the lake, you name it, all are such wonders..and today seemed to be an even better one - as we walked around the park across the street, watching children birds, etc  he would say, it's so beautiful here, i like everything we do...

So although so often i feel alone in this strange new life with a husband who often doesn't know who i am, or my name, who cannot follow conversations that pertain to what's going on in the world, who doesn't always get jokes ...misunderstands  situations;it's not all horrible, or bad, I'm still happy,  so that when he does say or do anything that is fun, or comprehends completely i'm delighted.  The main thing is to mingle and talk to others, and that we can do here, when feeling low, i make sure to have dinner in the dining room where we can talk to others...it's amazing how just leaving for an hour and a half to go with others makes coming home wonderful, and to have company - visitors and just be able to have this blog. helps..so onward to another week....g'nite.