Monday, December 30, 2013 Hey, jesus, it's freezing out here....

And so it was, but we were well dressed, and the only place Mac said he was cold was around his neck so, after fixing his scarf and his zipper up to the top, no problem...but no way was he was going to enjoy the sun on the snow today, so after getting on with our little errand we returned home...shortest walk ever, 30 minutes total...

 Since he had a kind of shaking up on Saturday, thought i better listen to him and get home, as Saturday was a great day, not too cold, snow was melted on the sidewalks,so  i guess I got carried away, and went too far...decided we should go to the lake and over protests from Mac, we did...but on the way home he not only grumbled but was breathing loudly and protesting...by the time we were a block from our residence he was stumbling,  almost falling down ..i'm sure people thought he was drunk or something.....luckily a couple were getting gas at the nearby station, saw our predicament, i was holding him up..so i asked them if they could drive us to the residence...which we could see from where we were, they agreed, and .finally with much shoving and lifting of his feet, we got him in the car and in about 4 minutes back into the residence...

that taught me a lesson, no pushing beyond his desires...From now on if I want to go to the lake and he doesn't, I'll arrange somehow to go on my own...and leave him with someone at home...he is not the same  gung ho guy in the winter any more.  Even with the big A he always prided himself on walking no matter what the weather...guess those days are gone.  So I listened to him today as it was really cold and soon we were home, and cosy in our own space....but then  sundown arrived and he was wondering just when he had to leave this place to go home...following that  he was listening to music on the radio with his eyes closed, I was happily receiving a book i had ordered - when he got up and asked if he should go down to get me two books...he was kind of sleep walking and talking...this he got over soon...and we were able to eat supper and the evening progressed really well...but here are some past episodes

last night he was saying 'where is that guy, he is always here, i said - who knows, guess he is gone...let's brush our teeth...no but where is he...you know the one i mean....answer by me,  no don't really, but if you saw a guy here maybe he'll be back...'yes he is here all the time with me...then i twigged and said are  you talking about janet..yes yes said mac..well I said, that's me..oh thank god - thought you were gone...then when he brushed his teeth happily, went to bed and after taking his meds - said...so good you are here, thought you were gone...this at about 10;00  later at about 10;45 i'm getting in bed, he is still awake,  waiting,  and saying are you sure  you are janet...yes so i held his hand as he was going off to sleep, then took my hand away...'i think we should hold hands all night. he said.'  i replied ..no but I'm here, and want to turn over and sleep...so as  you can see this made my sleep a little uneasy...what happens when i'm not here.

there is  a new man lilving on the 2nd floor his two sons are here almost every day trying to adjust him to be able to stay on 2nd floor,

  it's wonderful to see their devotion, but just learned that their mom died in january of a stroke, so the real caregiver has gone and the sons are kind of playing it by ear, but are frustrated...want him to  have a preposee take him down for lunch etc, but he is on pureed food also does not start conversations..they want mac to be with him to talk - but mac does not usually ininiate conversations either..also we do not go down for meals, only about 2 times  a week..they are on to the staff constanty saying if preposees can take care and bring down the others on other floors, he should be able to go down for dinner etc too..i understand where they are coming from, and that is why i keep mac with me...  Sooo my only problem these days is worrying about how he will be when if i'm not here....

 

Guess i'll just put those thoughts away, relax and just do the best I  can..it's  time for bed, g'nite

Thursday, December 26, 2013.....Who sent us that card....

We are still getting cards and today we got one with a letter - Mac noticed and asked who sent it, well it was from an old friend - actually a girl whose parents and mine were close - so she was more like a cousin...and since she put us up to date about her life, I thought i'd just copy and paste my update to her in this blog, so for those of you who know all about us, this will be kind of a bore, so you can just stop now...

 

Hi Anna,

Just received your Christmas card and letter putting us up to date with your life , thanks so much.  I can't recall if i sent you a card - hope so - keep busy with mac so not always on target...Although..this move has been a good one for Mac and I, as you probably remember he has Alzheimers and here we have help in so many ways , i.e. an aide gets Mac  ready for the day and another gets him ready for night..and there is a nursing staff if necessary, meals etc, although i do most of our meals  we do go to the dining room about twice a week..

 

Somehow i seem to be going all the time, if I'm not washing clothes, i'm getting him ready to go out for a walk - baking, or visiting , going to doc or dentist etc.but the big thing is walking, which he is not keen to do in this weather, actually I'm not either i'd rather be skiing, but walking is so good for both of us..we don't go too far before we are both enjoying the cold fresh air -if it's too cold there is a shopping center nearby, he needs the walk, it stimulates his brain, actually mine too.  In these cold days it's great to come home to hot chocolate and cookies.

 

We love the ambiance here in lachine, not too far from the lake - it's heavenly in the summer...Sundays Mac and i walk to our beautiful St. Stephens heritage church (it's anglican) and really tiny about 40 pews in a stone bldg. 191 years old...he still does not like church but sits in the back quietly with me-too cold for him to sit outdoors which he did in the spring, summer and fall.  Christmas eve service was lovely and for once the church was filled up.

 

The people in the church are so so caring, .  of course we can't walk there in this weather,from our home here on 32nd to  church on 12th,  but someone usually come for us and brings us back.  Wednesdays we go to a study group,  mac does not participate, but sits and listens, once he said at the end...so much blah blah, and so little thought....which on some days is  so right.

 

The Seniors club -  The Teapot is on the lake at the bottom of our street...has a special bus to take seniors  shopping once a week,we have used this a couple of times - there's  a fun group of people and many different activities...we get there about once a week - this January there is special dinner for those whose birthdays are from Oct. to Jan.  Mac's bd is in jan. so we will probably go ...we already knew people here in Lachine, before we moved so that was, in a sense,  a really easy choice of location. 

 

There are also activities in our building, yoga, exercise class, bingo, oko - a kind of bingo with cards - music therapy with a neat guitar playing man called Richard, a library, birthday party day once a month...mac is not into these activities,except the music,  actually i'm not keen on bingo either..but we do the exercise and also at times  yoga but i prefer to go to yoga at the Dorval Community center.  .i have a respite person who looks after Mac - once a week - usually Tuesdays - have different functions i attend such as Book Club, Alzheimer's support meetings, and visit with friends... 

 

So that's about it for how we spend our days...our family had a great time this christmas, we are about 28 people with all the grankids and their boyfriends and girlfriends, plus i think you know we have a great grandaughter, Finley, who is really precious...We get to see one or another of the kids every weekend, either we go for dinner or they come here, and with so many in the family we always have a birthday to celebrate besides the usual holiday celebrations

 

Living with someone who has Alzheimer's is a challenge , but as I always say, rather be with Mac then without, so this is the best situation for us...there is a 2nd floor for those whose case is too hard for a spouse or partner to manage..and although i know it's there and may have to have Mac there some day, i'm not at that place yet - and live in the  hope it will never happen.  Mac is humourous and mostly fun to be with, of course many times  out of it, cranky, miserable,not always able to express himself, and definitely needs care, physically and mentally, but still loving and lights up my life, so that's it for this Christmas...

 

bye for now...love, janet  

 

 

 

Monday, December 23, 2013 There is a peanut....

What on earth could have made Mac wake up  or sleep walk and talk - saying There is a peanut, with nothing in it...we must get it....."  nothing i could say would make him stay in bed, he was out to get that peanut...putting his slippers on and yanking all the covers off the bed, (while I'm yanking them back on and saying, pleeeze pleeze get back to bed)....finally he got  back in, only to get up again, this time more urgently, "we must get that - the peanut has nothing in it and it's going to burn' - 'not to worry, it won't burn - i said with an edge to my voice..but that of course doesn't get through to him in this state, and so it went up and down from the bed....blankets on blankets off.  This all started about 11;00 pm. continuing on and off till 3;00 a.m.

I've been trying to think of what causes this business - i.e. sleepwalking and talking...one thing is that our preposee who got him ready for bed last night came in - most agitated ...pouring perspiration and showing me her soaking wet shoes socks and edges of her slacks...apparently a man in Tower A. sat on the toilet and - BROKE IT....causing water etc. to flow all over the floor...she and a nurse quickly took blankets and sheets towels and whatever they could to try to stop the flow...till finally they got someone - apparently a handy man, the janitor not on duty Sunday night....and so there she was practically crying..saying she had 7 more people to get ready for bed after she finished with mac - and her shoes were soaken....Well lucky for her we wear almost same size shoe so i lent her my runners and socks...put her's on the baseboard heater to dry....so this was the scenario before bedtime...so perhaps he was feeling the agitation - who knows...

This evening, while trying to get someone - mainly another preposee to help my friend the one with all the infirmities - i.e. rheumatoid arthitis, can hardly move with her shapeless hands and frozen inplace legs - in her wheelchair) there she was poor Muriel  sitting in her own excrement for about 1/2 an hour till fnally got someone there - total time one hour i managed to ask the night nurse. while running around for the preposee .for some idea of what I should do.re mac's problem....he was completely unable to give me any kind of idea other than to suggest i give him an adivan..sic  ...so i said could he bring one to me before bedtime, - yes he would...well it's now 10;05 no adivan and mac is in bed and sleeping...so guess i will phone but i'm wondering if I should take a chance ...i'd like to know just how it reacts with the kind of meds Mac already takes before bedtime..

We have been reading about the abuse in elder homes, but it seems to be everywhere and i think it's partly because the places do not have enough staff...my friend muriel told me she had a harder time getting bathroom help at the lakeshore General Hospital...apparently in this place it happens but not all the time, but there it was par for the course...yikes...

We have a new resident whose two sons are so caring, and they were telling me that the nurse would take their dad's blood pressure every morning for about a week the first week, now he doesn't  bother...they wanted to know if mac had his done...'No - but then they never did in the first place..their dad is on the 2n'd floor, and really wanting to go home...his name is Tony...they want Mac to be a friend to Tony...it's not working at present..but will try again tomorrow.  The son said to me 'I love this guy (his dad) to bits, and can't stand to see him alone with all the people staring in space on the 2nd floor...'  well that's the way, both Tony and Mac are but we talk to them, don't leave them alone, and I know to many, Mac must appear to be just a body sitting there..because that's the way I felt about Tony, till i started to try different questions and wait for something to make him pick up and take note and then answer  -

This is such a sad situation...I hear more and more disheartening stories...and I'm so wondering how it must be for those who do not have the wherewithall to put their loved ones in a place like this where we do have help-it's not the same for everyone...Tony for instance is in a wheelchair, can't eat solid food, is in diapers, but is fairly perky....others can walk, but can't talk, can eat anything and others have to be fed...and so it goes..but
 all have the big A...all have families..but I can only notice about 5 families out of all the people with the big A. here that come on a regular basis and talk, walk, and try to stimulate their loved one...i remember when my cousin at 90 had the big A.  I thought when i visited, well not much point in coming - she really doesn't know me, well now I know better and it's so important for their morale, and one can really see a difference when a person takes their time - talks normally and demonstates some interest in the patient with A...as certainly our table mates at dinner have gotten more response from mac than anyone, and with some really kind of insulting comments, but i guess it's better than being ignored...well - not going to ignore Mac now myself, will get to bed and hope the darn nurse does not come with the pill and wake me up....g'nite..

Friday, January 20, 2013 I'm not hungry.....

Because Mac rarely knows what time it is, or if it's time to get up, go to bed etc....he was not the least bit interested in going to the Christmas Party Dinner given by the staff of our Residence...The Floralies...Could easily understand this as he had a fairly busy day, starting with going to Raymond...his barber of over 40 years...then shopping with me at the Grocery Store...each of these activities is,  for Mac, a mixed blessing...anything new - i.e. getting a haircut...is upsetting..and he always says..no way...Going to the Grocery store can be overwhelming when it's crowded and noisy...Christmas music etc...but once he was involved in both these activities, he was fine. 

Raymond his barber not only drove us to his home where his barber shop now is, but conversed with Mac - which is so good.  As Oliver Sacks says - people do not consist of memory alone, people have feelings, imaginagion, drive, will and moral being...thus Alzheimer's disease does not stop a person needing what makes him feel happy and contented...he needs contact with friends and family - and to feel secure and comfortable..Raymond certainly does that for Mac...and he also drove  us to the grocery store and picked us up, as it was so windy and snowy...and although Mac never really knows for certain who I am...yet as he get's in the front seat of the car, he always says,  Jan, are you there... to make sure I'm in the back seat...this always makes me wonder...but certaily it is security for him that I am there....

So at 5;00 p.m. when I told him, hey let's go it's the turkey dinner party..."I'm not hungry..it's time for bed..."...well no it's only 5:00 p.m. he couldn't believe it...but fnally he did see his watch and the digital time, so agreed to go down to the dining room...There too he was so secure..sitting with Edith who taunts him and says, look you got your food all over your napkin.. one would think he would hate that..but NO, he laughs and tells her "watch it..i'll get something all over you'...chatted with the staff and I just realize again  how much this place and the people in it are so good - not only for Mac but for many of the residents...

Later we had a great party..with an entertaining singer and loads of dancing...staff were terrific dancing with people who looked like they would rather be asleep. but once moving to the music...they revive and enjoy..we for sure really enjoyed, in fact I danced holding mac's hand as he sat and moved his feet as did the man next to him who also held my hand.... Many of the regular non ill  and non- physically handicapped people and visitors were there, singing in both languages and dancing...  Till Mac said to me...'ok it's enough' it was and we happily went up to our apartment, and for a change...Mac didn't think we were on a train..knew where his bed was and is now peacefully sleeping...so time to join him in slumberland..a great day.g'nite.

Monday, December 16, 2013 It's bloody cold.....

And so it was, mac said it like it was - really cold, as we went out for our usual walk, but didn't get too far, as although the snow has been cleared off the sidewalks - the really good thing about living on a busy street - the snow gets cleared pronto...Mac moaned and groaned about how cold it was on his face...actually the sun was great and he was dressed so warmly the only place he could feel the cold was on his nose and eyes, as i had put the scarf up high and he had a helmet type lined fake fur hat....of course i was also dressed warmly and really enjoyed the short walk...but that is all it was - to the shopping center next door and back.

This was a stay in or a nothing going on day, but with Christmas cards and buying gifts i thought at last I could concentrate on trying to see if mac gets it..Christmas  ...that is...Well it's hard to say...as he certainly joins in when i sing Christmas Carols, and even makes fun of them...i try to see if talking  of Christmas when he was younger would trigger some memory, but no, that seems to be really gone...

Watching a little boy smile for the camera on Santa's knee...this usually would bring some comments, but he just said 'cute"  and then come on....we don't want to be here all day...so i'm finding his curiosity and his interest in what's going on is slipping away, and the only thing still there when we walk is his love of the sun......how beautiful it is...this is also the case here in the apartment....the new little tree all covered with ornaments and tiny lights....does nothing for him, the cards and the decoration in the hall, again no comments...but the sun going down making the sky all shades of pinks and rose...that drew comments as it does every night.....and in the morning as well as he eats breakfast...

A typical day today, with giving him directions to the bathroom and helping him when he needs it, answering his comments on who lives in this house, and who owns it, and isn't this Chateauguay, and wouldn't it be good to be in St. Henri..and of course the usual, I don't have a cent...i wonder where i can get some money.looking for his mom..visiting our friend who is feeling much better,  to say goodnight, and watching 'the voice.' in fact listening to music most of the day...is about the best stimulus ...but it's always a delight when he does reacte and say appropriate comments, and so when we were at our friends room, i was yawning....he said,  o.k. let's go time for bed...' i was thrilled, an absolutely on target thing to say...and so it is time for bed.....for sure now...g'night.

Saturday, December 14, 2013 I'm so sorry.....

Reading the gazette these days is almost impossible - just never seem to be able to do this, but tried today and although i didn't finish the article it is so meaningful and i will get back to it...all about one woman's struggle to keep her husband in the hospital, he is suffering from the big A. as well as other problems and the hospital want's to dismiss him...she mentions how it is so hard she has had him home for 3 years and talks about the difficulties as one can't tell what may happen next, and especially in the sundown syndrome, she is so right.  Yesterday's little scenario started about 3;30, kind of early but it was a dull day although we did get out for a walk the sun seemed to leave about then...and sure enough so did Mac's recognition of ME.....

He decided he wanted to leave the apartment and search for his wife...so I went along with this, and as we went downstairs on the elevator, I tried to convince him that hey, that's me, I'm Janet your wife, but he would just laugh and say "cut it out....you are not Janet', and so as not to antagonize him, I just said, oh well I thought i was...and we continued down to the lobby...where he waved or kind of salutes different people, and as we approaced the little enclosure where people sign in, the receptionist gave her usual big smile, and waved - saying "Hi Mr. Mac", and he gave his usual salute...and said "I'm looking for my wife'  she kind of laughed and said pointing to me "she is your wife',  he looked at me and just laughed...i said, - "he doesn't think so tonight'...with that Elena, stepped out of the booth, walked around to him and said. with her hand on his shoulder  she said 'Mr Mac,look at me,  you know me right?   he said "yes'   she added, "Do you trust me',  he said "sure', she said, "Well - this is your wife, Janet.  She helpes you, She loves you, Do you believe me?"  With that he said "yes, turned to me and said - with a kind of sheepish grin  "I'm so sorry'...and as we walked away with me giving a thumbs up sign to Elena - he said, I think I was in a deep sleep and didn't wake up till she talked to me loudly...I guess I'm crazy...I said, well no   then said,   hmmm"well maybe just a little, and he said   "hey wait a minute....there' and we both laughed...

This kind of scenario ended so happily, but it's not always the case, sometimes he cries as he mourns his mom, even tonight he was saying "did you see my mom',  i said, "no not lately'   that seemed like a good answer as he replied, "me neither, i thought i saw her, I wish I could find her",  I agreed and mentioned it would be nice to see all our families, our sisters and your brother...then he added and my Mother...finally i was able to bring the conversation to "yes and to be able to play hockey again, remember your skates went to Leslie...''oh did they...then we went to Lacrosse, which he just loved, so then he thought  "hey maybe I will fool around with the lacrosse stick this summer,  I answered, sure why not...

We then managed to have a light dinner....and he couldn't believe it was dinner time, , Well what did we do all day...  Couldn't believe he had been with me at our friend Dorothy's.  "Don't you recall watching me swim in her pool...'no way- 'yes way..."well how did that happen, how did we get there...and so it went on, as i told him how we had a wonderful lunch - more like a dinner - he had sliced lamb potatoes lovely cream of zuchini soup...(just a note here her chef at her residence is great, ours is well ours makes edible food, her's makes a super deluxe dinner) but i still like our apartment and location better, so one can't have everything, and anyway, I like to cook...but getting back to mac's memory...his day had disappeared into who knows where...but thankfully, he is still here and now peacefully sleeping (hope)...so better check that out - g'nite.

Sunday, December 8, 2013.. you're looking a bit fat....

In answer to the emails i received re; my bad day, here is an answer to one that kind of covers how it is now:

Thanks for your emails, i have been meaning to reply and in one of your emails you mention that you wonder how i get time to pee....so true..and when i do i take my book in with me....don't get time to read the newspapers or books until mac's in bed, it's crazy as he really doesn't push me to give him attention, but i feel he needs to have attention otherwise he sits and veges and i need to feel that he is in the here and now.so i try to read him stuff, hold his hand and dance to the music we listen to, especially the blues at night on cbc...hardly watch t.v., tho try to see the big bang, as its one show i get that's kind of fun...

 

What's kind of sad is he doesn't really feel any kind of link to mandella, and we used to support the ANC by buying badges...and contributing to the cause, we still have a badge with mandella's picture when he was young with Free Mandela, and another with Combat apartheid,in two langages on an ANC flag...

 

Though he is aware that our friend from downstairs that we used to visit for 15 min every night is not there,  (she is in hospital still and now has pneumonia) strange though he always says - he is not in his room, i say, mac,  SHE is not in her room. then he says oh yes she's a lady...sometimes he really gets the gender of people mixed up.....especially if they wear pants - have short hair,  even myself, he will say you ARE a girl right?

 

Anyway, i am o.k. now but it was sweet how he would say every 5 min after i returned  'what happened'   i'd tell him and then he'd ask again, until I said...o.k. i'm fine, no more saying "what happened...'just hug me and then we'll have some flat ginerale'

 

Right now i can't have anything sweet darn....as i've just had a root canal yesterday..and my mouth is still sore,   well it's 10;25 p.m. - will hop in bed and read my book...Brother I'm dying by Edwidges Dandicat...haitian american writer...2 of our people for mac are Haitian, but since they read only in French, they can't borrow the book....

 

Well did hop in bed, and just finally falling off to sleep when mac woke up with saying its 757, i said no it's 12:30...then realized as he started pounding the bed, that he was asleep - or sleep talking and up but not "with it"

That continued as he kept saying "Jesus, then jesus christ and over and over, and then if I said look things look better in broad daylight, lie down and try to sleep, he'd say WOULD YOU SHUTUP...so decided i would and finally he lay down - went back to sleep and I lay awake till after 3;00 a.m.

 

But all was well today, a glorious sunny one, so we went for our walk for an hour in the sun...with mac fairly on target,...and after dinner tonight so on target that he said   'hey you're looking a bit fat..."  well guess whose in trouble now...ha.

 

So the person that's looking a bit fat, will jump in bed with skinny, and hopefully skinny  won't be taking the lord's name in vain in the wee small hours  or fatty will be upset..g'nite. 

 

December 6, 2013 Friday...... Sure that's o.k.....anytime...

We have had a week of ups and downs as usual but it's unusal to be ME who has the ups and the downs personally, so it was kind of good of Mac to say, Sure that's o.k...anytime...when i told him "look just for a change I'm going to leave you on the 2nd floor this morning, Richard (music therapist) will be there with his guitar...'Well where are you going',  "I'm going for root canal work at the specialist is that o.k. with you...Sure that's o.k....I'll be back before lunch...Mac's answer, 'anytime'...well that was a nice change and I actually left him quite contentedly sitting with a group of A. patients downstairs all with their eyes closed, waiting for Richard...of course when I got back he wasn't so happy, but got over it fairly quickly...especially when I gave him his favourite these days...hot chocolate, made with milk and coconut milk...Don't know if I have mentioned this before but coconut is supposed to be very good for Alzheimers, some say it makes a big difference, well i have noted such a big difference, but anything that will help to increase his abilities, true or not, i'm trying it out.

Along with a sore mouth I have had an uneasy tummy...since Tuesday when i went to an Alzheimer Support meeting at the Alzheimer office (this is a meeting we support people attend,) my group meets every first Tues of the month...I managed to get my respite person Debbie and there i was on the 191 bus on my way, when all of a sudden, for no good reason that i could think of my mouth started to fill up with water and boom up chucked into my hand...ran to the bus driver who didn't have anything but a piece of brown napkin, so i grabbed it, said do you have a garbage..'hey he said take that away i don't want that near me...so i stuffed it in my pocket and boom up my tummy reacted again...so busdriver was near a bus stop and he stopped and i got off and whooped it into a little snow bank...got back on the bus...the third stop for the same thing, i said, to the busdriver ...o.k. i'm not getting back on, and off he went on happily without me, There i was this side of nowhere and I felt i was throwing up my whole insides....

Just then a lovely looking blonde lady drove into the parking lot at this nowhere place, she saw me throwing up but drove on in, so i followed her and when she stopped i ran up to her car saying, what street are we on, i want to phone for a taxi...She said through a closed window 'GO AWAY'  well not only did i continuoe to retch, but now I'm crying as well...as i stumbled along to the next parking place when i saw her go into a building s I followed her, saying "Please help me."   She just screamed, NO, and where is everybody," we were in a small porch, that had code punch thingies..so i walked out, coninued crying and retching, she came out and i said, through my hiccups, "never said this to anyone before, but you are a B----h..."....and i tried phoning my daughter Val...and while i spoke to her or was trying to,  a man in the next office  of a building saw me and said, 'it's o.k. lady, I'll call a taxi for you...wait there...'  well what a nice Black guy he was, he brought me a roll of toilet paper while i continued my throwing up of nothing...he gave the address, I was on a kind of service road of N otre Dame st. W. and that's when i met an angel in disguise as a Taxi driver.

He held me while i threw up nothing again, helped me and my toilet paper roll into the car...and quietly said, o.k. relax, where are we going, i cried my address out to him - wiped my face and leaned back...then i proceeded to hear two lovely stories that distracted me completely from myself...This he said when i told him how super he was to help me like that...he said,  did you hear about the wonderful animals - think they were monkeys or guerillas that helped a little baby in the jungle..and even brought her up, as her parents had died there...'no i said, - he said...look on the internet...then he continued with a story about this man he said maybe yiou know the name  'jesus'  i didn't answer, as he just kept talking  saying , this man was crucified but the jewish people don't do that on the sabbath, so they took him off this cross, his friends put him in a kind of a grotto, where they thought he was dead, but he wasn't he got up the next day and walked out...he showed some people his hands with nail holes, and they were surprised.  BUT, he didn't stay there, he went across the sea, to india, where he lived the rest of his life, his name changed, just like me  my name is Marabek (think he said) but people here don't pronounce it properly so my name is changed ..anyway, you can go to the city he went to in india (forget the name)  his gravestone is there with the two names....

By then i was back at my place, and quite amazed at the stories and could actually ask how much i owed him.  he said what it was, and i paid and then said, 'what religion are you anyway, he said, well i celebrate all the religious holidays of all religiions, but i am Muslim....(though i don't really follow the religion), i said, I think  you do, you are a muslim angel...and as we shook hands and said goodbye..he said, remember all the religiions lead to the same God...

Well when i came in the apartment, Debbie and Mac surprised to see me, i just hugged mac, and said, I'm sick...but i'm getting better, and how lovely to have Mac hug me and say 'hey what happened'...

Monday, December 2, 2013...Now I feel better....

We are having a busy time of it, going to our house in Chateauguay, to make sure we have things given to the right people and bringing home what we want.  Fortunately, Deb, our homecare worker and friend has found many thing she wants there, so that's great.  Managed to get stuff to the St. Vincent de Paul, check out Communitaire Chateauguay to pick up what's left - all this while Mac is saying can't we just go, what do we care - but now i'm seeing why ... he really is tired and what is more coughing....he could hardly stand up at 8;30 p.m. and was practically asleep on his feet.  So once we got him in bed, he said, 'now i feel better...so now I feel worse, as I'm hoping he is not getting anything - especially not the flu..as he refused to take his flu shot..which is a first..he always took it before.  That's one  of the problems with living in a seniors residence where many of he people are not in tip top shape...and ambulances come and go....

This is what i wrote to put in my blog yesterday....

well another downer -another friend here not well.... i mentioned last night to my friend Muriel in transition room, that Dec 1 i would bring her a little gift , a small table wreath with a candle in the middle, and when we get together in the evening for approx 15 - 30 min before they put her to bed, we will feel christmassy talking by candle light.  This afternoon went down to check her out and tell her the candle light conversations would begin monday night as we would probably get home too late from the birthday party for daughter gaye. -

 

Was so sad, to fine she is back in hospital that makes 3 x in 4 weeks....she has tummy prblms can't seem to hold down her food....she has pains constantly - rheumatoid arthritis,  can hardly scratch her ear or move her hands- sleeps with her knees up as she can't put them straight...it's awful. but  her mind is great and lovely...and i'm praying that she will be well, but 87 and so many health problems it's an uphill battle for her.

 

So here it is the night we were to have our candlelight conversation...well it probably,would not have taken place anyway, with Mac  so tired...but who knows...he hates it if i'm doing something he can't really partake in, like playing a dice and card game - which i did at 6;30 p.m.  i try to get him involved as its a very simple game..but no way, he just sat and sulked..and then at 7:30 when we left he just steadily went into sleepy mode until he finally got in bed.  saying I'm so happy to be with you, don't leave me, i feel safe when  you are here...i said i haven't been away from you for one minute all day.  You had supper with our friends in the dining room, had a great time, and we are now in our apartment...so relax and enjoy your bed.  he said, yes i sure will...are you coming to bed,

in a bit i replied....just going to answer emails but forget that....

 I'm kind of tired now as well so guess i'll take my book in there and join him, g'nite.....

November 28, 2013 Friday..... Are we going to bed now...

mac gets very tired by evening and tonight at 7;30, asked, are we going to bed now...for one thing it gets dark so early he starts on his sundown syndrome problems at 4:30, in fact today he started it when we went for our walk, saying...it's bloody cold, I really think i should go home to Montreal. No way would he believe he was in Montreal..but he did add, well my mother was near here though, she was working here...i find he is starting to make up stories - as his mom really never worked anywhere...plus he told his cousin (on the phone),Janet was here for a visit, she was working nearby...oh really?? So it does get a bit eyeopening these days... Although yesterday's trip with the Teapot group to Target and out for lunch at Scores he was fine, he loves company - that's for sure.

Since i have so little time to do this blog, or in fact read books - write emails, though i spend time on phone calls when i can...last night, he fell off the chair, while i was on the phone thank God he was able to pick himself up by getting on his knees first...this is the third time he could do that, he could never do that when he fell at our house in Chateauguay, the neighbour always had to pick him up ...so that's an improvement...

the rest of this blog i will put in a couple of email replies to give the answers to some questions friends have asked. this was my response o a friend who phoned him...
Mac was so happy after he spoke with you, it kept up for some time, and he just
loved talking about you and what help you gave him....i showed him an old
pic of you myself and mac - retirement pic, he said, oh that was long long
ago....i'm sure he doesn't look like that now..i said, just a little older
just like us...he said, well he is such a good guy.. and you are....

just a quick note to thank you for your 'advice', it's always good and always accepted, many people including the people that can make it happen, the CLSC here have suggested Mac go to a group..we have tried to get him there, but he will NOT, he has never really been a joiner...he likes to be a leader...when i leave he just sits and sulks and gets furious...my friend says to make it happen one has to leave him there for a few times, problem is i can never get him to go ...right now he is in a bad mood and not too happy with his prepose who is getting his p.j.s on...he has his sundown moods...sometimes the time goes by and hes just fine, tonight is not one of those times.
it is so much simpler to just walk, enjoy and do various things with him although it does get tiring...i often long fo him to be able to discuss politics and events going on, but it's not going to happen...i do tell him what's going on, but it goes over his head...
well he is on his way back and wants to watch t.v. and then bed...so gnite and thanks for your support love you
and so i do love my friends and love mac, so must join him in bed...g'nite.

Saturday, November 23, 2013 I thought I saw my mother working....

With sundown happening so early, we now go through the scenarios with Mac thinking 1. he has no money, or 2. he has lost all his money...or 1.  he wonders if his mom is still alive, or 2.  he'll say 'I thought I saw my mother working....I try different answers to the questions re; his mom, but the safest is to go along with him when he says he thinks he saw her..but the hard part is when he seems to be quite able to take the news that she is NOT alive..and he does, take it, but then perhaps the next day, he will not even ask, but just sit quietly crying, saying, I dreamt of my mom, but I know she died and no one told me...

The first part the being broke, no money...well that at least is always a winner although he can go through saying how happy he is to find out he has money in the bank, and now he knows how to get it if he needs it, and also he has money in his wallet..the only thing is that 5 minutes after his happy feelings about (a). he has money in his wallet,( b.) he has $$$ in the bank, is,  he then forgets - we go through it all again..this can go on for one hour..and then there is the unhappy thought, that hey maybe you are not telling me about my money, maybe i cannot believe you...At times i then lose it, and we get into a kind of argument, and i raise my voice this can make a scene that can go round and round getting nowhere..........till i finally realize stop the noise, and just say, ok Mac, I'm taking a break from all this, i'm going to sit in the hall, you sit in the front room and we'll talk about it later...Hello, it works, so now i'm learning to just postpone stuff if it gets too out of hand...saying we'll look into it - good idea. we will check the bank tomorrow.

Sometimes there is no answer that can please, and it has happened where he is totally frantic...yelling and wanting to go to his own home, his own place...and wants me to get my car or a taxi and take him...this is unnerving...so I have a call in to the doc..and have been giving Mac his pill earlier -which the doc has not called me back, about this, but so far it's working.

So I'm putting in these sad scenarios but there are still good parts of the day, morning, and early afternoon, when we walk, mostly in the building, till one oclock, and then no matter what the weather, we are OUT, i'm looking for ways to have him enjoy,other than walking and so far music is the only way...we do crosswords, or I do and he listens and says that crossword puzzle is too old, one cannot find the words anymore, but sometimes we click on a word together...he is at the point now, where he cannot read, write, and only sometimes enjoy t.v. pictures, so...i've tried something new, and he seems to enjoy...that is reading poetry, i've started with simple poems by Christina Rosetti, and we'll see how we do...so onward and upward...

Of course if it seems that my life is totally all Mac, of course it is and it isn't, I do go shopping, visit people have company, talk on the phone, go to yoga..(all with mac, except for 3 - 4 hrs. a week) and there are other parts of my life that do not get into this blog as I want it to be mostly  Mac's memory...so his memory tonight before bed is that he has new p.j's...they are so great he thinks he should wear them in the day, he ended his day, by having me phone Gaye to thank her for the lovely gift of p.j.s  - his preposay, thinks he was in the best mood ever because of these new p.j.s so think I'll go to bed now and see how well he sleeps in them...g'nite

Friday, November 21, 2013 you do all the work.....

While putting things away and trying to make our place tidy this evening..mac said, you do all the work around here, i hope they pay you...Well that was a bit of a surprise, so glad he noticed ...but I replied, well you help...oh yeah what do i do -- well I said, you carry our bag of laundry to the laundry room, you dry the dishes, you help to feed the cat.  With that he kind of brightened up, and so on we went to the elevator and down to the dining room for dinner..  We manage to go about twice a week, which he enjoys and i'm beginning to think this might help us to get over the hump of "sundown syndrome'...which at times can get really out of hand. 
On the way down he was keen to talk about his money or lack of, and this recurring theme happens just about every evening..thankfully by the time we get to the dining room he is distracted and manages to forget, but not too long after dinner  he is on the same page, it is either his money, of which he certainly has enough i always hasten to tell him, and to show him...but it's never enough and the conversation can spin on and on, till I'm just about ready to drop...or it's to talk about his mother, and is she dead or alive and why didn't I tell him, why do I hide the information etc etc.  It did little good to talk about the super phone call we got before going down - my cousin phoned from California...and he had a great conversation with him and also with his daughter, there was no distraction, as he hardly remembered the phone call...

Tonight i just about had it, and said so..'look that's enough, we go over this every night unless someone is visiting us, and I think that's it, stop, we will talk about this in the morning, when I'm brighter and have more patience to go over it so many times....surprise, that helped he said, o.k. and was o.k. with going to watch t.v.  so sad though that we cannot talk about the politics in Canada, and the scandals going on in our Government...i heard this joke and it would have made him really laugh in the past..so I tried it, - said, the new program title for mayor Ford  is "The Big Bong".. he just looked at me..and I just laughed and said, well you had to know a bit about the mayor and his drug problem...oh yeah he said that guy is always on t.v. well that was a step in the right direction.

 His sense of humor though is still there and when the preposay said, as she finished getting him ready for bed..."now you are a new man'   he said - and now you are quite a liar...she laughed and just loved it...said you are so funny ...and he is..he even managed to joke a bit when I got home from yesterdays day out and the day before - imagine i was able to get out for two afternoons without too many problems...I had prepared food, and some activity - helping Debbie with the laundry...and the dishes, making lunch later so this could happen..so that's the good news.  Was going to make a kind of graph so he could see the time passing, but he can't really read or understand even pictures so that was out.

It's a challenge, and especially so as when I am home he is beside me like a lost puppy, as even now he is waiting for me, so must go, i've typed this at record speed so i know there's many errors...but wanted to get it down....g'nite.

Saturday, November 16, 2013 Did you grow up in St. Henri.....

A spectacular day....warm, sunny, almost unbelievable in this month of what my elementary school teacher used to call NOWONDER, as it seemed that it was always awful and therefore so was our work, ...but not today, it was cloudless, blue and beautiful so  after Mac and I went to a Christmas Bazaar, we walked all along the lake - t'was super...the ambiance was such that as we strolled we enjoyed everything, the cute dog with his coat on, standing up in a cart being pulled along by a guy all in black leather on his  motor bike radio blasting  cool music...children pushing their scooters, and teens walking hand in hand, and of course oldies like us...walking hand in hand...when out of the blue, Mac said, Did you grow up in ST. HENRI??

Well, no i didn't, i grew up in Park Extension, mac said, well i grew up in St. Henri, i said, "I know",...oh - how did you know?  he replied..  So then I went into our usual ....how we met at pine beach, how he saved the day for me, by giving me my sweater, when I ripped my bathing suit geting out of the rowboat...then driving me home to my friend's home on lakeshore road...on the bar of his bike...we then tried to figure out, or I did, our ages at that time..can't believe it...I was 15 he was 17 ...i remember that day and that summer, and i thought i was really mature..ha.  Mac said, you remember everything so well...then I go into the other litany...how he has lost his memory, much like a person with amnesia...so i am trying to remember everything for him...and as usual he says...well do you remember my mother...I thought i saw her the other day...

It's really amazing how these themes stay with him just about every day, the good thing is that where he used to cry when I'd say, Mac, our moms are gone now...we are the oldies, you are 83 I am 81...he now replies, oh yes you're right. Then he always says,  Funny, though I thought i saw my mom, right in the place where we live.  When we returned back to our place, i realized, he is right, there is a lady, who resembles his mom that sits downstairs every day...so I went over closer rather than just waving hello, and said hello to her..and Mac said hello, .after we left i said to mac, she looks a little like your mom, don't you think.   He said,mmmm no I don't think so...oh well, tried.

As long as we are together, and as long as i'm always in good mood - which is really necessary, he is fine...he can't stand to see me sad, or cross...so it works two ways, as if i'm o.k. he is o.k. he can sit for quite some time, waiting as he did today at the bazaar watching the people, i sit him well back, he can't stand too much noise, feels that he is necessary, as he holds my stuff, and knows that way I'm sure to come back to him...and as I leave the same little refrain follows me, 'don't get lost:...Now i have to work on this theme, that is, to make it clear that I have to go out sometime by myself...and he should relax, and know that I will come back...maybe I can give him some task,  dry dishes ???or something that he does anyway, but that is the only kind of thing he does besides carrying my laundry to the washing machine...this is my big problem, leaving ..and i have to be out Tues and Wed. of this coming week...maybe leave him with some pictures to show debbie and explain...if he can.. as well as the dishes...

one funny thing that had me laughing today, i was helping him as usual with his clothing when he was in the bathroom and my cold clammy hand touched his warm bare waist...he jumped and said..."hey', i said oh sorry my hands are kind of cold...he said.."darn right, don't touch me anywhere else down there o.k.'...well hey i don't intend to...and we both roared i guess you'd have to be there....oh well, i take my laughs any way i can...I need them.

So time to watch t.v. for a bit...i wish he could follow the story, but he tries,  i'm on computer early tonight and he's waiting, for me to answer my emails here...so bye for now.

Wednesday, November 13, 2013......I'm hiding.....

I've decided that the happiest time in Mac's day is bedtime...for although if the sun is shining getting out of bed is fairly okay, bedtime seems to be a safe and happy occasion. In fact, starting around 8:30 p.m. he is keen to brush his teeth, wash and by then he already has had the preposay who has got him in his p.j.s so he is kind of champing at the bit to hop in...i kind of try to keep him up, by encouraging him to play with the cat...watch the news, but these are only very peripheral distractions, to the main attraction, the BED...so by 9:45 he is getting tucked in, tonight as i was tucking him in, he was smiling and all of a sudden he pulled the blankets over his face...I said hey what's going on, he pulled the blanket down and with a big smile, said 'i'm hiding' ...well i just cracked up, he looked so happy and it was rather fun as we both laughed as i gave him his eye drops, which is almost the last thing that has to be done, the other two things are his pill and his patch..(meds for Alzheimers disease) then the very last thing is his kiss or should I say kisses goodnight...

These days i'm concerned about his going to bed too early as we have not been walking as much (freezing and damp) and therefore, his sleep is not as deep, and his being awake in a dream can be a real pain. last night he was looking for some items under the blankets,then had to get out of bed to look under the bed, finally he gave up, when I said, I think you will find them in the morning in broad daylight...well o.k. he replied, and thankfully fell off to sleep again.

I'm also concerned about how he sticks to me like glue, which is okay as I enjoy having him with me - and I know he feels relaxed knowing all is well, jan is there. BUT, I do need respite, and at this time I only have three to four hours a week without him...He comes to yoga with me on Tuesdays, and watches as I do yoga, or closes his eys and relaxes, he comes with me on Wednesdays to our study class at the church..also.with me shopping or Teapot activity...(senior's club) The social worker feels, i should really try pushing him to a Day Center for A. clients like himself, apparently they all protest but after a couple of weeks, they look forward to this activity...i have tried, but he really hates the idea and protests
loudly and vigoursly, i may try again...will check out which days they have.

It's amazing, every one thinks he is so wonderful and quiet..and he certanly is as long as he is with me .they don't realize how he can be loud and threatening when he is not able to be with me ...in fact when it has happened in the activity room, the people there thought he was fooling...little did they know...Last monday i took my 3 hour outing - had to rush out of the apartment, with him yelling and following me, and Debbie our caretaker, yelling bye jan have a good time...Once the door was closed, he knew he could not go out in the hall, even there he is lost...so he proceeded to sit and glare at poor Debbie, as she tried to interest him...in t.v., looking at pictures, finally she left him put food near him which he ate...but would hardly communicate...not a good situation.

Next Tuesday - is my next excursion, must must try to have it a more relaxing and pleasant experience for all concerned..but how..will give it some thought...but for now, must get some sleep myself, and i know who is going to be happy I'm there, and i'll be happy too..g'nite..

Friday, November 8, 2013 Does she have any family....

Altogether a fairly good day for mac, not necessarily for me as I have other problems in my life besides Mac, such as getting all kinds of stuff accumulated over 50 years out of the house that we (hopefully) have sold, also making sure of the power of attorney, mac owns the house - i have to sell, so there are few glitches here.  That's one of the sad things about this disease - we cannot share problems as Mac's memory is so short that even when we are packing stuff in our home, once we have returned here he forgets that we have even been in chateauguay, and that we own a house.  Yesterday he heard me saying his name on the phone, asked what that was about, I told him well i was mentioning that you own the house in Chateauguay, well that caused a little fracas, "no way, i don't own a house, well i replied, with me you were in that house 50 years...a stunned face as mac turned to me and said, impossible...but then I digress as I wanted to say how he was today.....

He was super, joking, as we walked in a freezing wind to the bank, walked back home through the mall nearby and then later, looked forward to the fish and chip dinner we were to have in the dining room....i have mentioned before our table mates, 95 year old Edith and 93 year old Alice..but at another table nearby sits one lone but happy lady - she is or looks sharp, jokes and talks with us and every Friday has her beautiful white hair done at the beauty parlor here in the building...But at the end of the dinner, she always looks a little wistful and quickly the 95 year old Edith jumps up and says do you want me to take you home...'oh i don't want to disturb your after dinner tea...Edith always says, no problem, i'll come back for it...and off the two of them trot...Edith very very slim and spry leading the taller lady along...When Edith came back i said, Rita, that's the lady's name, is always walking she certainly knows her way around the little park in the back and around the lobby...Edith replied that's as far as she can go, otherwise she would be lost.

i was surprised to hear Mac say..'Does she have any family???  and he was so on target as that is so correct she is always alone...Edith said, her family live in Switzerland or somewhere, and she does not have any visitors at all..  Well she is always keen and never seems to mind - i added...Edith said, she would be lost though if i didn't take her home - she is never sure of where she lives...i said quietly to Edith on the side,  neither does Mac..well she right away turns to mac...Do you know where you live/  mac said, 'well I'm not sure, but I guess I would go thruogh a few doors and find our place...I could see that Edith was quite shocked...but that didn't stop her from saying as he got up from his place and started brushing all the crumbs and stuff he gets all over himself...You are a little baby, I'll just have to spank you if you don't stop messing your self, and with that she started brushing him off...Mac said, "be careful or I'll pop you one...she answered and I'll pop you back and they both laughed happily...

This is how it is, he loves the people here and can take all kinds of guff from them.especially from Edith,..we visited Alice later to give her the number of a local dentist...and he was so happy to do this, he thinks of this place as one big home and everyone part of his life...sometimes when we are eating dinner in our apartment, he says, are we the only two here...he loves the ambiance when walking around the building waving and talking to everyone...so since we had no where special to go to for any length of time ..he was a happy camper all day in this big home...so .hurrah and  g'nite.

Wednesday, November 6, 2013 I'm leaving when she comes...

It's kind of a damned if I do and damned if I don't.  that is, saying i'm going to a meeting and Debbie will be coming to visit while I'm gone...should i say that a couple of hours before i leave to give him time to digest, or will he simmer all the time we're walking....or should i just wait till Debbie comes and let him know last minute...last time i did it at the last minute, big mistake, he was hostile and it was not a very good day for either Debbie or Mac...Decided to tell him when we were out on our morning walk, by the way the weather was super, (is this november?) kind of a big mistake for me, as our walk was ruined.  We saw all kinds of lovely scenes, childen playing, a beautiful big dog wanting us to pet him, Fantastic  fall coloured leaves, trees with their leaves completely gone but berries covering the branches still - what kind of a tree i was wondering to Mac, well no way would he look or comment....over and over he would just say, i'm leaing when she comes...

Finally he would not walk beside me, furious that i would not go along with his comment plus he said he could stay by himself, he was not a baby...It didn't matter that i pointed out that no it has no way anything to do with him not being a man, but that at this time he has to have help, his memory is gone - and if he left he would get lost...so sad to see him marching off by himself and then stopping at the end of the path in the little glade we were in, not knowing whether to go left or right...this happened over and over..as he marched head up and stiff, i would casually go and give him a little steer and he'd quickly march on ahead...again..till we were home..

Well of course, i still went to the meeting, which was all about MEMORY...although i could probably give the talk, it was good to reaffirm what I've learned, for instance, Dementia is not the same thing as Alzheimeers, Dementia is the umberella term, Alheimer's is one of the 6 different forms of Dementia, although the speaker from the Memory Clinic at The Douglas hospital gave the names, and i thought i would remember  ...sad to say, i don't except that in some cases such as memory loss from stroke, and one other - the memory can possibly be regained, but in the case of A...no, the plaque that grows on the brain is what causes the memory loss, and the brain shrinks...

Some Memory loss is normal when one ages, and the different ways of helping the mind to remember, are of course - crossword puzzles, learning a new language, exercise particularly exercise where one breaks a sweat..-though all sorts of physical movment is good especially - walking - which was the reason the doc thinks Mac is still going strong, as many at his level of memory loss have many physical problems - he does have a problem with speech, and movement but usually it would be worse if it wasn't for the walking....

To keep memory it is important to use and think about  foods  such as those that are recommended , - coconut, vegetable greens, less root veges such as potatoes as the starch in the potato turns to sugar...apparently there is a type of dementia, sometimes called  diabetes of the brain, or a vascular dementia..caused by high sugar intake, it is .also  important to control weight...take Vitamin B12
Risks of having the big A. if it is in the family, is 5%...

The ways of helping those who live with A. -to lessen the stress  suggetions were to meditate,   take time
for yourself, share the burden with family members, go to support groups or a group, ...

well all this was very helpful, and of course the socializing was also on top of the list, and that is what i did with the people at the meeting which took place at the Teapot (seniors club)..it was great to discuss and meet and greet others - we all were pleased to know that it was common at our age to forget words,appointments, even what day it is or date, and of course names...i didn't mention that my mom said that forgetting at a late age was not my problem apparently i was forgetful at 10 years old, so hey maybe I've improved...

To make this long story short - mac was apparently upset when i left and continued off and on, not because i was gone,but he couldn't fnd his wallet, and said he thought the workers here had stolen it...immediately when I got in the building Debbie and he rushed to tell me, the solution was fast, up we went to the apartment and i showed him where he always leaves his wallet...hurrah, that made him so happy, so problem solved, and a happy camper was there for the rest of the day..even over the sundown syndrome time.  so speaking of time, it's time for bed..g'nite.

Sunday, November 3, 2013 I must have been away....

I have been writing this blog for some time, and it goes under the name of Mac's Memories...in the beginning we were able to talk about his memories, and some were so vivid to him..it was a pleasure  Now  gradually these memories are really fading, one last wisp is that he knows that he grew up in St. Henry, and of course his memories of his family, are also very very vague except for his mother, which he always thinks is still alive...

...As i've mentioned before he really does not remember his  own family, or for that matter that he is married to me and that we have children..If I walk ahead of him and someone should get between us, he would easily follow that person.   In terms of knowing where he is even in our apartment  which is mostly one huge room, with nooks a  hallway, bathroom and bedroom he can get lost...so as a kind of therapy not only for him but for myself as well i've been telling him the story of his children and how we had five children. Obviously i can tell him the same story over and over and he will repeat the same thing.."really i have five children, I must have been away from them...

/And so i start with our oldest - Leslie, show him a present day picture of Les, and say, see he looks like that now...then show him pictures of Les as a baby, other pics of les with his sisters..but they don't seem to interest him, until I include him in the story...


Just tonight - I said to him, how funny it was when you came to the hospital to see me after Les was born, you walked into my hospital room and kissed me and said, so how are you now.  I said "well I'm so happy, you must be happy too,  you got your wish"...My wish, what do you mean - i said, well you now have the baby boy you wished for.  What!!!, the baby is born, and with a big smile and tears running down  your face, you wanted to see baby Leslie right away...so we both went to the nursery and looked through the glass at our baby. you said,  gee he's cute look  he has black hair and looks like your dad...  Then you said, I have to phone my family and let them know...well what a shock, when you phoned they all said, we know we called the hospital, she had a baby boy...how come you didn't call us before...seems the doctor told me later that he called but no answer, but you said - no way, but perhaps i was sleeping - anyway that's the story i tell him and we both laugh.  Mac then looks at Leslie's picture and says really, it's strange, I'm sure I must been gone for awhile at that time...

and then surprise, Leslie phoned...and again Mac told him he was away a long time - and when les asked did you walk today...he asked me, yes I told him we went for a long walk from church at 12th ave, to our home at 32nd,...and that's how it goes, macs memory is now my memories of him, which he surely loves..

 i can tell him that  story again and probably will, but for my own sanity, I will go on and tell him more little stories about our children or about himself ...i have found that it is helpful in the sundown time, dinner and later, to talk to him about our day, what we did this morning, as he sure wouldn't remember - i describe how he used to be such a good skater, or whateve comes up in my mind about his past.....it keeps him grounded and  seems to make him happy and less agitated less worrying about his mother dying, or where we are and in particular this feeling of loss that he seems to have at that time...and the feeling also of an anger that can't be explained.

He is happiest going to bed, i guess it is a "safe place"  and that's where he is now, so time to join him, g'nite.

Friday,November 1, 2013 Jan she's not here ....

"When you are old the wind is always in your face" picasso.....well i read that quote somewhere and have quoted it to Mac on so many occasions, as he can't stand the wind...but for sure he got more than a faceful today...although it was a warm wind it was vicious and almost tore our clothes off, pushed us and shoved us all along the path to the lake...That's right we headed for the lake as the Teapot place for seniors is there and that's where we were having our feet 'done"  ..toenails, etc...all against Mac's wishes..but in the end he was happy with the results..and as we trooped along - again in the wind - planning to go to the pharmacy and then the IGA grocery store..Mac let out some really great lines..like 'this is a bugger, it's more than a bugger, its Christ jesus  I don't know what it is, but it's the worst wind ever....

When we got to the pharmacy to pick up our meds we couldn't get in, the electricity was out and doors couldn't be opened...when we arrived at IGA, no problem, and so out of the wind, and picking up our groceries, i asked mac, to just stay with the cart near the frozen foods, while i raced back to the fish counter...just then, pow all the lights went out...so scuttling back in the dark, i grabbed his jacket and said, 'it's o.k. it's me'...lucky for me it was he ...ha..anyway, after about 15 - 20 min, the lights came on...people were frantic at first and mad as they were not allowed to leave ...understandably, they could take whatever and just go...but all turned out well...by then though we had enough - so we took a taxi the short distance home as we didn't want to battle with the wind plus groceries..

After discussing how good our feet felt after having foot massage, and all that stuff, with our daughter Gaye on the phone, she then spoke to mac, then I guess asked to speak to mom, he never knows who that is, and perhaps she said Jan, and I heard him say "jan- she's not here...she's out there or words to that effect.  So I told Gaye, he really doesn't know me...as jan. or for that matter any name.  But. sometimes I'm janet...back when he first met me, that is what he knew me as ..but sometimes janet doesn't register either...what does register then...as for sure he always wants ME,i think,  is the feeling that is between us...he knows it's there, and as i said to the nurse one night...we're under the same skin...and we are..

I so often feel for him and wonder how he must feel, not knowing where his family are, not knowing who they are, where is his mother, how come I know she died, how come he does not know this...why does it happen that he can't remember things from 5 minutes ago...where are all the people that he sometimes see in this building...so often he will say before he goes to bed, "i guess all those other guys are gone eh?"  i always say yes - they have gone to bed, so we should go too.  he said that tonight as well, and I answered that way, and it's true, we should go to bed, and that's where i'm heading, to be with him because although he may not know me, i sure know him, g'nite...

Thursday, October 30, 2013 We're not married..no way....

As usual when we walk, especially around dinner time, Mac wants to go through his life history, where is his mom, is she dead, and where is his bank account...then when i told him, he asked, 'how do you know...for one thing we're  married i replied...He looked like someone shocked him completely, "we're not married, no way"...well we've gone through this scenario so often, but i managed to distract him direting his attentiion to  looking out the window at the trees, and the breeze and changed the subject - we were walking around the building we're in, he didn't want to go out...too cold and windy he said, so o.k. we're  trying to walk inside, as walking is the only solution i find to his sleepless nights, or i should also say mine, as he can go back to sleep after checking out the front room, or the windows, or whatever, in the morning around 3:00 a.m.(which he did last night) ..and then .i'm lying wide awake...

He is still a feisty guy and has lots of questions about all kinds of things, and still has a fun streak, but when i read something today...a quote from B.B. king,  which was, " the beautiful thing about learning is nobody can take it away from you...well sorry B.B. but the darn A. disease can take so much learning away...which is tucked into our memories...

But. on an p side, we were at Mac's barber today, he has had the same barber for over 40 years now...they are great friends...Raymond was feeling a bit sad mac doesn't remember him and trying to make up for it, Raymond started  talking about his family and how he retired from his barber shop in CN station, when suddenly Mac said, hey I kind of vaguely remember CN, and working there...when was that...well just a little thing like his saying that cheered both Raymond and myself...we launched into when and where he worked, but it soon all faded away...but we all manged to feel good, and enjoy the sun  ...as we continued on with our day Raymond taking us on our way..he is so great he does Mac's hair in his basement barber shop, picks us up and brings us back...and as he did he remeniced about how mac used to be so on-target with politics and now with the elections going on in mtl. soon...he wished Mac could talk about that...but that's a thing of the past...

Yesterday, .Glenna managed to get him engaged and  happy too by showing him his degree from Sir George  and putting it up here in the apartment...he seemed  to understand that...and enjoy the fact...so guess learning in different ways is
how we will continue our life, and  the fun of just enjoying what's going on now is what is important...like listening to dear Ella, as right now  he is tapping his foot to Mac the Knife..

today's quote by victor hugo says it all, "Music expresses that which cannot be put into words and cannot remain silent.....g'nite

Saturday, October 27, 2013 I have to press these buttons...

Haven't been doing too much walking these cold days and somehow i'm blaming that on our sleepless nights, or i should say my sleepless nights....Mac has been tossing and tuning, these nights, and also talking in his sleep...which is a kind of problem but wasn't too bad until a couple of nights and especially last night where he woke up and didn't know where he was, and was searching all over the place saying, i have to press these buttons...i tried to speak softly as i know when someone is sleep walking one is not supposed to be rough or loud...didn't matter....as  he continued to walk around the room, and if i said anything, he would yell - 'shut up'   yikes...i was trying to calm him and at the same time wondering...should i call the night nurse ...what would she do...she may be rough..who knows..  So these days I'm looking like a racoon with a black mask over my eyes - sleep ...wish i could...even in the days, he seems to need me to be wide awake, i try to lie down and he says...'are you sleeping ...does the cat need to be fed...the radio needs to be turned off...i guess he feels at loose ends if I'm not on-target.  Anyway, i'm trying to remember what i said that calmed him down last night...as i don't want to have any more problems...or i want to have more sleep....that's the main thing ...

We've been out and about to different places which may be disconcerting for him, and he may feel anxiety which goes into his sleep pattern, but he doesn't want to stay home with anyone, insists on coming with me and then gets a bit jumpy and wanting to return home...oh well onward and upward..

he is still fine in the day and i want to keep the two of us together as long as possible, so will decide to get someone for him next time i have too many places to go in a day..that could be the problem also...who knows...must do that.

In the meantime there is always chocolate....so good afternoon....

Wednesday, October 23, 2013...how does it feel to be married to a......

As i have mentioned so many times when i think things are going so smoothly, they crash, and of course the opposite is true...when it gets really bad, all of a sudden things start to improve...or so it seems  with this disease..but on thinking it over, it could also be a combination of things ... the outward effects of my behaviour, the behaviour of family, or friends, as well as weather can have a good amount of bearing as to Mac improving or going downhill, it's really hard to say. 

For example today we were at our old house in Chateauguay, preparing the house to be sold, or we hope so anyway in the near future..Usually going up and down stairs there with Mac was almost causing me to have a heart attack.  Today down to the basement, and up to the 3rd floor, no problem as long as he held on the railings...other times he can hardly step up a one inch level, so just as his physical behaviour fluctuates so does his mental level.

An example of how he looks at the situation he is in is, sometimes it seems  that he is  completely unaware, doesn't seem to pick up on when people are saying things about him, in front of him, like would your husband like to sit here or words like that  - they behave as if he has completely lost his marbles - may whisper or act kind of fearful.   So i wonder if he really is kind of aware, and just overlooks it , or  as the other day he was going round and round about a usual subject, his pension, how do we, or he live without money, where does he get it etc.  i could answer in depth or briefly, doesn't matter he will ask again as soon as the explanation is over...ending it with "oh i'm so glad you explained, now it makes sense", then he will start the process all over again...

Today he started another 'round ' as i call them to myself.  'how did i get here, when did you arrive here...etc etc.  When I explain that we have been married for 61 years it boggles his mind so much that he doesn't believe it and roars with laughter..how come he will say i didn't know that...then I explained even further mentioning he has lost his memory...sort of like someone with amnesia, i say, you  really have - NO MEMORY.   So he accepted in a way, but then along came the same questions...along with the other 'round',..i think I saw my mother ...and so we were off on another usual tangent, so finally i kind of impatiently said, "look, we've gone over that scenario, let's leave it for now ..o.k.  Then he said....o.k.  by the way how does it feel to be married to a lunatic.  That kind of blew my mind.. "i said stop that...you are not a lunatic, you are great - and  live in the here and now, and try not worry about what happened in the past, talk about  what's going on NOW.  Right he said, because I'm kind of stupid...Again, this stopped me cold...and of course answered you are not....

So this evening I pointed to  his university degree, and his picture of graduation and  retirement  photos and plaques, (Glenna felt these would bolster his self esteem and that I should bring them and put them up in our new apartment) I mentioned this and said i would do this as well as put mine up too....we would put them on the wall...absolutely no comment was forthcoming, he didn't seem to see the significance....yet when i put the book mark that i read to him every morning at breakfast back on the table --, it had fallen on the floor , i decided to read it to him  tonight - he smiled and said 'is that true?'

this is what the bookmark says.  You are Special -  'i can't stop thanking God for you.  Ephesians 1;16

I said; of course - it's true.... o.k. if you say so,  he replied... so he went to bed happily, and i'm here to say truer words  were never spoken, so g'nite

Sunday, October 20, 2013 o.k. let's just stay right here....

Weather and it's many manifestations, rain, wind, sun, snow etc...can really make or break our day...if it is cloudy and rainy, Mac who has a barometric personlity goes right along with the weather,,rain he is rainy and depressed, snow well that's not so bad.thankfully winter isn't here yet...but..as the sun is usually out and as long as we don't have too much wind we can still go for our daily walks...but today it was sunny but deceiving since we've been used to warm weather the cold wind really took us aback...so when suddenly the wind kind of stopped and the sun shone on us Mac said, let's just stay right here...and as we wallked along the wind would make the clouds go over the sun then away, and that was the theme over and over...each time the sun would shine on us it would be ' let's stay here...and he would give a little laugh. 

 WALKING   in my books is still the best therapy - we've been getting reports lately that some have heard that Red wine is good to improve memory for Alzheimer's and of course there is the one we've been using for a few years now and that is coconut oil, and coconut..although i dont always stick to that - and haven't really any proof, i figure it can't hurt so i do cook with coconut milk if i can or coconut oil depending on the recipe...someone mentioned there will be no research on this to see if there is any proof as it won't give the pharmaceutical companies any $$$...perhaps the Coconut Companies can do research is that possible i wonder???

We attended the Alzheimer's Cafe last Tuesday, The speakers - from CLSC and the A. Assoc talked about how  research in that field is now being directed to  prevention...a little too late for Mac, but something to think about for the family or others who may have the big A in their family...  The research is  being done at McGill and through Hotel Dieu.hospital .with a Dr. Gauthier.  The research also shows that only 5% of the people suffering from A  have it because of heredity....but  one of the speakers whose wife has A. spoke about how his two daughters and son were tested for the gene and are fine - they do not seem to carry the gene...this is when the woman who heads up the A. Assoc  quoted the figure of 5%...interesting.
At this time they are looking for people from families with A. to do tis kind  of work. i.e. testing for the gene and prevention..although i'm not exactly sure of how they will do prevention.

Mac was of course, really not paying too much attention, but one of the questions I directed to the woman from CLSC was how much training is required for the person who comes to do respite for care givers.  She answered one year, sppaently if i have a person  - which i do that is a friend doing this work, she can get the training through CLSC.   Respite for the caregiver, who is usually wife or husband of the person with A.  this is one of the most important points as many of the caregivers need care themselves  if they do not take breaks...adding that the breaks should be for at least a week to ten days every six months or so.  Baluchon Alzheimers is an organization to give respite, charging $15.00 a day.  This was news to me and another  surprising thing i learned was that the CLSC evaluation of the person with A. should be done every year..

I'm putting all this down for the record...also just checked with mac if he remembered what we did today...he thought and thought but when i said we went to hear a Baroque orchestra he said.  yes that's right....did you like it???i asked,   Yes,  he said but no additional remarks,   We also ate dinner in the dining room here with our two table companions  Alice and Edith, ages 93 and 95 respectively...they did their usual kind of snide remarks to each other...but it's obvious that they would be lost if they did'nt have each other to talk to or talk about...and so it goes...Think it's time now to do some of the crossword puzzle with Mac, he gives me a word or two or confirms words that I pick, and then it's on to some t.v. and bed, so g'nite.

Thursday, October 17, 2013 I'm leaving this place....

So to add insult to injury the girl or prepose who was on duty this morning was the very one who he hates, along with her was a lovely new girl learning the job...and to top the whole scene of misery she said it was absolutely necessary that he have a shower...After his fall yesterday i warned them she must make sure he is holding on carefully to the hold bars in the bath etc...With much swearing and  threats they did get him into the bath, but I stayed, made sure he was covered, told the girl, 'look he is not fooling, as she would kind of giggle every time he let out a stream of oaths..this is not fun for you for sure i said, but it is humiliating for him, he wants to do this himself, think if it was you ...well the second girl translated and so she tried to say please Mr. Mac, and was a little more careful....The final insult was when she washed between his toes...and it hurt...i said, o.k. look i will do that next time.  Mac said, are you out of your mind..there will be no next time, I'm leaving this place.

I now realize how good the other preposays were, as he would be in and out of the shower, with very little complaint...and i also realize how difficult it is, as Mac's limbs are very stiff,  plus he doesn't try to do any moves without much cajoling, and one has to show him where to put his hands - his feet, his derriere...while he is taking the whole thing as a game as he says..'it's a game here and I'm out of the game for sure'...so between feeling sorry for him, I have to feel sorry for the girls as well, as they are only trying to do their job..in the end he is exhausted and clean....he has now had his breakfast, and is sitting on his fave chair, sleeping..

 I have to do the laundry, which is pretty heavy, and he usually helps me by bringing the bag for me across the hall to our laundry room...looks like that won't happen, i'll be dragging the bag myself ..but we'll see..  Hopefully, as the day progresses, and the sun tries to shine through the clouds, the same thing will happen and his good nature will come through, and we will be able to go to TheTeapot..seniors group...for the lunch they are giving today...

If nothing else, he will enjoy a clean body, lovely washed hair and beard...and i will enjoy seeing him looking so spruce...although sleeping  - so think i'll try giving him a few pokes and see if he can bring the laundry with me...so onward and upward...it's not easy for him, or for me either, but it could be worse...just got an email to see if i would add my name to those already on a list to free some poor guy wrongly put in a Russian prison...Amnesty international...so you see its all in the perspective one takes..so g'day....

Wednesday, October 16, 2013....If somebody asked me....

The other day when we were walking in the sunshine, Mac turned to me - stopped - and said 'If somebody asked me, Do you kow where you are?   I'd have to say, Christ no...I have no idea???All said with a quite a contented look on his face..I said, "Well you know you are in lachine, right??  '   Oh yeah? and then he was on to other thoughts and quite happy saying how everything was so lovely and warm,  except they should clean up the mess..turns out the mess was leaves all over the sidewalk.   I pointed out how beautiful the colors were, but then sometimes his perception of color is not on target  or his for that matter perception of a mess i other times it's fine...so one never knows...

How aware is he of his  problems?? sometimes so much so  that he cries and realizes that he is in limbo and life is terrible...other times like this morning he was not going to put up with people who dress him, they are all Bimbos...and he will have to go away...or like the night before when he was absolutely livid, so furious that he was still holding his hands in fists after the woman got him ready for bed...saying he felt awful, (she was showing someone new how to do the job...) he was feeling humiliated and was near tears speaking through clenched tears, as he said, 'she stripped me naked in front of the girl" ...

So i stayed in the bathroom this morning and tonight when the preposay came - made sure he was partially covered at all times - but he also had a different girl, one who is really on the ball, kind and makes jokes, talks about her day and his day- this makes it all pleasant.

.the one he hates does it automatically cannot speak English, and seems to smile in inappropriate places - I also reported to the head nurse that he did not like her, but apparently they are very short staffed - also the Director is away, so tomorrow a.m. he will have the preposay that made him so upset back again.. I will definitely be there and will make sure he has me to talk to and the girl covers him when she is not washing that part of his body...just when one thinks everything is going so smoothly  boom it all changes...

One of our neighbours from our old neighbourhood mentioned how well he is doing here, and I said - right, walks better, more on target most of the time, has fewer sundown problems, less aggravated, even though for sure all the time he is only in the moment and really is trying to make the best of the situation..and then i added he fell three times there  but has never fallen here...well today it happened...he was walking into the front area from the hallway, and i was leading the way to the bedroom to put away my purse, when i heard bang..came into the front room to see him flat on his back...thankfully on a carpet so didn't seem to have hurt himself, and surprised me by turning on his side...I was able to get him to get on his knees and pull himself up using a chair i held for him.. Before we came here the only way he could get up was by calling the neighbour...who was able to lift him up..so maybe that's an improvement of sorts, but how he fell, is strange, right on his back, seems he lost his balance.  Apparently this happens and may happen more and more...so must mention this to his doctor.

He got over feeling shaky, and seems to have forgotten already, but I must make sure to be behind him and near him - it gave me such a scare, but for mac he seemed to be more amazed that it happened at all...took the opportuity there to show him that he cannot stay in the apartment alone, as he was complaining about going to my study group with me, wanting to stay home by himself...well that's not going to happen for sure.

We were surprised to see that my friend's mom left her cane here, she has the big A. and came with my friend yesterday for a visit..i suggested he try out her cane, but no way, so i guess he will have to rely on the old cane or the old walker, both of which are embodied in the old reliable - ME...

So he is happily asleep, (i hope) so must check that out, as one never knows ...g'nite.

Friday, October 11, 2013 Do you have a home ....

Thanksgiving weekend is coming up, and I do have so much to be thankful for, but does my sweet Mac...for one thing he asked me yesterday, "do you have a home?"  Each day i realize just how much he is so so in the moment.   He must think, who is that person with me, and where are we, and how do I get money to live, and do i have a home, does she have a home...anyway, that was the question...and so I answered it, 'yes WE have a home, we live together, we are married, and we're going to our home right now to have supper, but before we do we'll get our turkey, it's going to be Thanksgiving and a Birthday Celebration at Leslie's home.

So much information at once, kind of throws him, so he just concentrates on the turkey, and where will we get a turkey...We did do all those things, go for a super walk along the lake in this most unusual and warm fall weather..and as usual enjoy the scenery, the sunken boat, the little babies we see and a lovely surprise - when talking to a young woman with a little doberman pincher (sic)..found out that one of her four jobs is at Air Transat where she knows our young friend Kev, son of our dear friend maureen.  She said she will be sure to tell him she met Jan and Mac...hope she does...as Maureen is not online and lives out west, and so hope Kev will be sure to tell her we're thinking of her, or I am...and so it goes...

A friend - another maureen, was shocked to know that Mac does not know where the bathroom is or anywhere else in this small apartment..as he is or seems to be so on target.  She invited us for lunch last week, where our conversation included mac and he answered and spoke appropriately...able to offer fun suggestions to her other guest ( quite deaf like he is)..and so gave us all ,several good laughs.

So while he deceives others like our last night caller, dear Gail from Fla.  (his neice) when he said - "of course I remember  you" and possibly he does at the time...but she was right on one thing, he was pleased and overwhelmed with thanks for her sweet words which were how much she loved her dear uncle Sonny, and how his part in her life was so precious....but when he hung up the phone...he said 'now tell me - how do I know that lady..so there is no deceiving me as  I repeated, that she loved him and had wonderful memories of him from St. Henri days...and so that helped and then we were off and running about family and of course his mother which can be so sad as he remembers she is no longer living, - at times i can move him into a situation where we remember her without too much sadness...

But sometimes the sadness not only overwhelms him but me, and i couldn't believe my own emotions when I tried to explain to the preposay today, to be slower with him - "say a few words to him and please don't be abrupt and a bit rough...(this one girl seems to make him nervous and saying  he wants to move) - by the way had to try to explain this in French...she is Haitian..anyway, when I was trying to say it the tears started and she completely sympathized and when I showed her how many times I changed him as it wasn't a good night, she wanted to look at what I gave him for brekkie, so sweet, she said, give less fruit..and then gave me a big hug - causing me to have to leave the room, sympathy seems to send me over the edge....therefore, today even before thanksgiving day..i will concentrate on being Thankful, thankful that I still have my beloved Mac....g'day

Friday, October 5, 2013 They are so good here...

They are so good here, says Mac as we walk out the door of our building...and they really are...he so loves to walk through our lobby, wave to all the people that he seems to know are somewhat like him.  As well, the woman at the front desk, where we sign in and out...always asks..'how are you today..Captain or Mr mac...or Blue Eyes...depending on her mood... And  Mac always has either two thumbs up - or says, how am I...who knows.. i don't know...or I'm 100 %, and then her comeback, that's great..I love your blue eyes, or You are the greatest, o r you are # 1...or you make my day....

How can he not feel good in this place, as she as well as the others take great pleasure in waving - talking or just giving us beautiful smiles...I always have a heart filled with gratitude for their caring ways, especially as so many cannot go out ...or even if they do not have the big A  are handicappied in some way that makes walking any distance difficult...i could give so many examples of their caring - sometimes teasing - sometimes so helpful, and always there for us...even to the extent of one of he residents phoning me to see if i'd like her packages of jam she didn't eat at breakfast, or her cookies for Mac...bringing us extra sugar pkgs for mac's coffee (he needs 4 or 5 pkgs in his coffee)...i find this so sweet as we only eat in the dining room about once a week.  The jokes our table mate age 95 said tonight as i was bringing a chair for mac...hey she said, here Mac, sit on my thumb...- he is so comfortable with them...asking how they are, laughing as they laugh and loving the serving girl as she tells him   McConnell, that's a great name, Irish and Scottish...i bet...she is Darlene and a darling ....so can you imagine this

our neighbour along the hall, said to me ' if someone asked you how you liked living here - what would your answer be'...Well of course no problem, i answered, i'd say i like it very much...Mac - what do you think,  he said..'I like living here, theyre good here'...her answer she said..was..maybe some people like it, I do not...the apartment ..(her's is like mine) ...is too hot, or too cold...my food is never brought to me the right temperature or right time...people are not all there mentally....i do not mingle with them, although some are nice...Actually i almost feel we're in two different buildings.. BUT, she HAD to be moved here, she is physically suffering in many ways,  has had cancer of the skin, a broken neck, bad digestion, can only eat meat....suffers from depession ...walks with a wheel chair so she can sit down....no one phones her, she has - she says,  very few friends...So it's all in the beholder - no matter where one lives...health, attitude to life, and of course friends make all the difference.

So when we say goodnight to our friend down in the transition area..we are always so pleased for her, she can't move  must have someone lift her in and out of bed in a contraption that makes her wheelchair  a bit of a pain, she cannot put her feet on foot rests ...she cannot handle a book or a pencil or magazine...can hold the phone between her neck and shoulder and hand, she can press button on t.v. remote...and pick up with difficulty cookies etc...she cannot go to the bathroom ...waits always for someone to change her...BUT in her case a son visits almost every day...her brothers have visited her..(she is 85) they are older..and younger...her daughters live far away, but phone her every second day...Why the difference...She is caring always for others...a happy smile....gratitude for whatever people can do for her...and she quietly fumes for sure, but it's quietly...and then she tries to change things she can change, like how long she has to wait to be changed, or have food remains on a tray taken away..etc.

Well i'm sure we all know that old saying....laugh and the world laughs with you, cry and you cry alone..but it's true...so as the saying these days goes...Suck it in...yuck - don't like that saying..but it works, and we are both trying to live the saying so that we get our share of laughs...when we sometimes have to laugh so we won't cry.....g'nite...