Friday, July 19, 2013 Are we going upstairs now...

Last night getting ready for bed, mac said, 'are we going upstairs now..."  perhaps that's from the days when we were in our house and the bedrooms were upstairs..who knows...I often wonder just how much of the past is still with him.  One thing for sure, he is much more at ease, happier, and so at home in our apartment here in Lachine...this we noticed as we came back from the lake.  He was fine at the lake, but home for sure is here.  The worry of if I should drown is not a factor, ha.  Actually that is not really funny, as he watched me constantly while i was swimming - so guess it's better to swim closer to the deck, although i love to swim to a destination like the raft...But these are all minor problems compared with his uncertainty and nervous behaviour at the country last year...so for sure it must be the effects of having good care and a definite routine every day here in our new home.
Some of the neat things we do that give us such   good times are sundown walks , this is such a beautiful place for walks, i don't know if i mentioned that we walk to st stephens and back on sundays...although i like he united church, somehow st stephens church and the welcoming people have found a way into our hearts..(mac sits out in the garden while i am in the church).

 

.Then there are the great people at the Teapot Seniors Club in lachine, just yesterday we were  on the teapot bus to atwater market ....so as you can see we (mac and i) keep busy...and happy- , although i could wish that mac were back to his old self where he knows his past...this is not going to happen, and i'm not about to wallow around and make life miserable, theres too much fun to be had just the way we are..

 

When we were at Atwater market, we stopped for tea and a lovely lunch at the primier moisson there, while i was picking out our food, mac and a couple of elderly men got to chatting, he was so happy, telling them, he used to live not too far from Atwater market..in St. henri, t..and the three men were great...one especially told us how St. Antoine used to be the main shopping areas and that St. Henri...was the downtown of montreal, way before Eatons or Simpsons  etc were established...well this really made Mac's day....

 

Today was a quiet one, just a bit of shopping as we walked in the mall, outside it was a scorcher...but still a happy day as we watched a beautiful sundown from our bedroom window, and now speaking of bedrooms, i have to get the cat settled, and myself...can't believe mischa sleeps with us these nights...how did that happen...g'nite. 

 

 

 

 

Sunday, July 15, 2013 Who do we pay to stay here???

We are so lucky we have been able to go up to our country cottages, it's been 4 times now..a real treat - yesterday, our son Les, wife Jane, daughter Rosemary, and boyfriend Malachy as well as Mac and myself had a ball, wonderful food - and the wonderful sweet velvet feel of swimming by our raft..I can never explain this but the water by our raft, as well as by the island is just precious..and each time I swim I just love to let it flow around me and even taste it...it's just such a heavenly experience - for me - I know the water lilies, the mushy bottom and sometimes the deer flies, drive others crazy..but the water lilies are beautiful, the mucky bottom always makes me think of my cousin Bessie, who used to say, I bet that stuff is great for a facial, bet a mud pack would get rid of all our wrinkles, well i've never tried that , but for me it is a smooth treat for my feet....

Now though Mac just enjoys just relaxing on the deck,no more swimming for him -  he used to be the man who put out the raft, who pulled out the weeds, who made sure the deck was in order, who replaced the strips on the deck chairs, checked all the water stuff, boats wind surfers etc for holes...so it was rather sad to hear him say...:"Who do we pay to stay here???"  When i told him it was all ours, we paid for it long long ago....he said, wow this must have cost something,  then he said,  must tell janet, have you seen her - she is my wife"  .....hello, mac I replied, I'm janet, i'm your wife, and I'm enjoying being here with you my husband," he started to laugh, he said, "gee this is crazy, I  am so confused, but anyway, so you are janet, that's good.'

Well it is still good, we came home to our little apartment, quite happy, and preparing to go up N. again, how terrific is that, we'll be going tomorrow.   He seems to be quite relaxed about it, and allows us to help him over the rough ground, and enjoys just being there, as he seems to enjoy everything we do....as long as we're together....

Today we walked all the way to chuch, where he sat out in the garden waiting for the service to be over...he may have lost his memory, but the memory of NOT attending church is still there, and as he says he hasn't lost his intelligence, and so believing in spiritual things is NOT his thing.  But he says, "it's o.k. for you, "and he would rather walk with me than to stay home waiting...and our walk there and home along the lake is fabulous, it takes us about 45 minutes ...but on the way back, with stopping for lunch, and to enjoy it under the trees, it of course takes much much  longer..sometimes the rest of the day....and the walk always seems to give Mac the opportunity to see and think and talk, which is wonderful, it also seems to encourage his sense of humour..last week when we were walking a busload of kids passed by, and one yelled, "hey old lady and old man",,,i repeated what the kid said,  to Mac, and he replied,  quick go back and get that  little bastard... then we just laughed - i guess you'd have to be there to see how funny it was...

But funny or beautiful, or just ordinary, we're still happy to be alive - and as Mac always says, still healthy...hummm......g'evening...

....

July 10, 2013 We're lucky we're healthy....

The following is my answer to a friend's email...

 

yes, this is the day after the special DAY my bd  although as far as i'm concerned this is my special day, my special month and hey why not my special years...all of them, as we all know that life is precious so if we have health and can enjoy it, why then it's Absolutely  Special right.?

 

So far we are both healthy as Mac always says (it's so sweet of him) as he always says "isn't it sad to see "(whoever it may be, in a wheelchair, or obviously handicapped)," we are so lucky to be healthy"...this he says as we walk, talk and enjoy all the wonderful things that are within our view.  This morning it was the little forest glade behind the condos - called park St. Louis Village...as we sat watching the fountain of water and listening to the cardinal ...a man walked along with a cane - and again there was mac enjoying his health.   as he himself,tried to get up slowly and with such a problem from the bench we were sitting on.This always takes me by surprise, he doesn't seem to see his own health problems, or perhaps he just doesn't want to ...which is great..he enjoys.

 

Right now he is trying to explain to his visitor from CLSC, how important it is that this man help his fellow mexicans...the man is Mexican and works for CLSC visiting people like mac.  i stayed in for the most part of his visit as we have been having such a hard time with these people...i am trying to get CLSC to send me the same person every week so that Mac can get used to the person and think of him or her as a friend.  Instead, mac considers them a real pain in the neck and always trys to tell them he doesn't need anyone with him, he is capable of staying on his own.  He chuckles away saying "this is so silly to have someone with me when i'm perfectly able to take care of myself.   Today's person is such a nice fella, Arthur, last week's guy William was really fearful of him and said, ' he hates me etc..wants me to leave - this when i came home ...so today decided to just stick around, went downstairs for about 30 minutes to talk to the director of this place, she wanted to confirm that everything was o.k. and it is.  In fact i can leave Mac on the lock down floor with the nurse and the people there that are not able to be what they call 'autonmous' or i can leave him in the Activities room with the Animator - who usualy has a large group playing oko  a form of bingo..or some other card game...in which - for sure he will not participate.

 

now that he and Arthur are having such a good time conversing,  i'm hoping they will send Arthur again, but i'm not counting on it, and of course can't count on mac's mood either.  With me his mood is always pleasant as he is happy when I'm here, and not so when i'm gone...  i hear them now talking about English and French and how mac can't speak French very well now...so right, i'm improving he is soso.

 

Well that's the way it is these days...See you are enjoying; filling up the bucket or whatever with your list of what you have or will have done ..Since we live day to day or enjoy moment by moment...the list of these moments goes through my mind as i settle down to sleep at night...and since i started this email  early this afternoon and am only finishing it now - 8;30 p.m. Can say ALL moments were fantastic...by the time Arthur left at 4;00 p.m. they had decided mac was helping him with his English by conversing with him...and of course for mac this was great and they were hoping to see each other again...what a relief that is for me....then we .did our usual trek to the lake between showers...lucky we were in the shopping center next door when it rained...then enjoyed a beautiful day at the lake - meeting and greeting familiar faces, then home for dinner -  and now it's time for bed...saying what a red letter day..with an added plus as of today...mac and i can travel anywhere on the island of mtl. yippee he has a para-transport pass and i am his  caregiver..or whatever and have to be with him..- how super - g'nite...

 

Monday, July 8, 2013.. Do you live near here?

Was just thinking as we returned home from a beautiful long day at the lake here in lachine, that the today and yesterday were almost perfect, no big problems, just very minor stuff.  Also, thinking it's the walking when we walk and talk, it's super...BUT, then tonight we had to have the Sundown syndrome or whatever they call it, which started with, i never see bank statements, something has to be done - this is the first one i've ever seen, - and no matter how much i went over the fact that he sees them every month...it was no way...so finally tried and succeeded in changing the subject...saying 'let's go down and swing on the garden swing' so that kind of stopped him in his tirade, and so even though it was getting late, we went down to the garden swing, and while we were swinging, he took me by surprise. by saying 'do you live near here'......Well yeah - we live together my name is janet Mcconnell, Really said mac, that's so strange, you must be a different janet...well then he kind of chuckled and said, really ...you are not THE JANET...I live with...  where do you live?   With you right here i replied...well, that kind of threw him, and he sat looking at me...so i said, think we should go to our apartment now..it's almost time for mary to come to get you ready for bed....Well he kind of humored me and came up to our apartment. 

 

looking at the funiture, he decided that well...this is really my furniture, this must be where i'm living now,  wonder when i'll go home...

 

This always gets to me after awhile and i start to feel a bit sad and near tears when we got a bit of a surprise when we heard someone knocking on the door

The person that interrupted my kind of talking and getting mac oriented was the assistant head nurse.....he is shawanda Singh..a very handsome, 6ft 2 or so east indian ...he said that we are or mac is now his responsibililty and that he will be visiting us just to make sure we are o.k. approx 2 or 3 min every day....at about 8;30...just checking...i'm so happy as i often feel isolated in my situation  i do have access to the head nurse and the director here is a real doll. Louise Benoit, but i'm not keen to bother people, but with this arrangement, every day.....it's just to make sure..and if something occurs  well he is right there to help. 

 

Also he asked my age, when i told him hey, my bd is tomorrow i'll be 81 he said....you are  a very healthy looking 81 year old, and a great example of how one spouse can really keep up the morale and cognition of a person with Alz for approx.. 5 -  6 years..(they have all mac's stats) apparently mac is doing so well for the state he is in.  (Shawinda or Sean as he said he could be called,  has also been in touch with the preposees who help mac every day)- they told him we walk etc.  I said, well, this is my choice, we are married 61 years and we're almost in the same skin so to speak..he said - wow, that's lovely i'm going to go home and see how my wife feels, about

 that...hmmm.

 i wonder what he thought i meant.

Anyway, having him will be  a lovely birthday gift....g'nite...

 

..

Friday, July 5, 2013 This must all be a dream.....

Breakfast time and a depressed Mac said, 'this must all be a dream, i don't know who i am - where i am, i think i should just jump off the wall'  The mood changed as the sun shone in, and the breakfast strawberries and rhubarb sauce did their magic...but it took time and effort, but it was worth it to see the change.  The following is my answer to an email -where my cousin speaks of her connection with a 90 year old woman with the a form of alzheimers - dementia ..and how it effects the family and their lives....

Thanks for your lovely comments...it's so true how the disease makes spouses, close relatives and children feel in a sense betrayed and completely unappreciated - i have many friends who are going through this and it's heartbreaking for them...i have been through several scenarios through the past 3 years..where mac loves me beyond any love any where and then rejects me and acts like i'm some kind of ogre, swears at me etc etc. 

 

 just yesterday when i met a fellow sufferer - her mom has the big A. and had just told her to 'bugger off'"  if you knew her mom  and could see her it is almost funny if it wasn't so devastating to my friend....her mom never swore, and also she is lovely even now, but she has off and on times - this was her off day...mac has his as well, another friend says she feels divorced but not divorced, half the time her husband  rejects her and won't even know or speak to her, the other half he's crying that she never visits him...

 

We were out for dinner last night with friends - mac decided he couldn't eat had a funny tummy, and he could'nt talk to me either, in fact wanted to go back and sit in my friend's car...i just ignored the remarks, told him just sit here at the table and close your eyes, you don't have to talk to anyone or be friendly..and then i proceeded to sit him at the end of the table near the wall, then sat beside him.... ordered enough food for myself that would feed two..chatted to everyone easily, (although i could see some of the men were a a bit perturbed that i was ignoring mac) i just make it my business to enjoy, even if he was not, i can't let it overcome the two of us....anyway, by the time dessert came along, i said - mac I can't finish this would you like it...well he just lapped it up (chocolate mousse)..happily..

 

Then, .i said how's your tummy..are you still feeling ill, he said 'when did i say i was ill, what do you mean about my tummy'  he then proceeded to talk to people at the table, smile and joke...in fact here is one...AT the dinner i was given some talcum powder - called sweet night or something,  ...i said, o.k. mac tomorrow i'll have a lovely shower - sprinkle on the talcum get all sexy and hop in bed with you...his answer with a big smile...hummmthink i'll be in Toronto tomorrow....later when we were leaving someone said,  hey shes got that sexy talcum powder...and mac answered, yeah i'm heading home to bed fast...See, how different he can be...it's really a crazy thing that this plaque does to brain cells, and i go through different moods and scenarios all day long.....i could give you at least 4 diff funny and sad scenes from today, but i won't bore you...so all this to tell Glenn,he is so fortunate that he only has this happening so late in his mom's life..my friend has the disease and is only 65...it's hard to see her going downhill with her mind in a fog...it's awful..

 

anyway, you are caring and can really get your mind into how it must be for the sufferer...and it surely must be hell not to know exactly what's going on in one's  life, when  its' so hard to see your loved one  completely out of touch with reality...ooh for a cure..xxxjan

----- Original Message -----

Wednesday, July 3, 2013 Sure, that's okay....

On a beautiful morning walk through Village St. louis park, with shady trees, little ponds, and water sprays, little board walk bridges, and benches for two situated at scenic spots....apparently this used to be a golf course - was taken over by condo developers who did a great job of using green space to advantage...Mac and I wandered through this sort of woodland glade, admiring both the walk and the condo gardens - with mac talking all the way, about old times, he could vaguely remember, where he thought he may see some of his family, how he would love to see his mom...and eventually when we went through his history - always ending with his job with CN...i thought i would venture into how this conversation showed his memory loss, and how important it is when I go out in the afternoon that he have someone to stay with him...Sure he said, that's okay.  Wow how easy that was...

Well, after a snack at home and the time drew near for his home support person..hoping it would be someone other than the person who is not happy to be with him....i mentioned well as you know i'm going to go to a meeting, and you will have a visitor....well on came the man who said 'okay' with a different face, voice and answer...NO WAY ...YOU GO OUT THAT DOOR AND I GO AND DO NOT COME BACK...  just then knock knock...and i answred with a prayer that it would be somone other than William, but there he was...Good Afternoon Gordon....he said, which i thought was nice and friendly not too overbearing...the answer was...hello, what are you doing here....and went steadily down hill into swearing, and yet, how sad when mac said...Get my clothes i'm leaving.  I replied, see Mac you can't remember where your clothes are so please, just relax, go to sleep, or watch t.v., William will just do the same...he won't bother you....i'm going.  Well mac proceeded to go with me along with William, so i said choice down stairs with Elena who will speak to you ...she is our friendly receptionis...no way said mac...and he was really belligerent. and pretty nasty, obviously scaring William...  So at floor two, (lock down floor), i said bye to William got off and mac followed...luckily the nurse who runs the floor was right there.  i explained to her that mac would have to stay there...i would be back in a couple of hours   (This option had been given to me when we first came here- i preferred mac to have his own place but this couldn't happen today)...i left with him calling me "Bitch  wait till you come back...."   I checked in with Elena downsairs and told her i would phone later to see how things werel

Well to make a long story short...by the time i returned, he had forgotten his tirade, wanted to know where i went...happy to see me, and from there the day and the mood went steadily uphill.  out for dinner at a restaurant with friends..well he couldn't eat..but that's o.k.  just relax, stay cool and i'll save you a dinner for later or tomorrow..by the time dessert came along he was cheery..saying...have you seen janet...yep...here i am and for sure as you can see i'm still here, and ready to join him in bed...g'nite.

Tuesday, July 2, 2013 I don't need anyone....

Tuesday nights are becoming a bit of a problem for me, as I wonder how Mac will be when I have the respite person Wednesday....I lie awake trying to think of ways to make him relax while I'm away and enjoy someone else to talk to...Tonight while my daughter Glenna was here I tried to explain that when I leave, it is necessary for him to have someone here to make sure he is alright and of course the answer is 'I don't need anyone...I can stay by myself....I can look after myself...Glenna tried to explain that he has a memory problem and cannot be sure to remember such things as turning off the stove element....or if he went out he would perhaps get lost...

I have gone through that scenario hundreds of times so I usually just try to get him to realize he is helping ME, which he is..by telling him I need to be with women at a meeting, or doing other things that he has no interest in, and at the same time he has a visitor that can talk to him, or even he can ignore the person, sleep, listen to the radio, watch t.v. his choice...We have had the same person a few times, actually tomorrow will make it 5 times - but obviously he is not keen on that person.  William, this respite worker, phoned and is quite upset and I think afraid that Mac will get violent..or something.  I asked him why he didn't ask his superior to replace him, apparently she gave him reasons why he should stay with Mac, i.e. he has alzheimers and will not remember him anyway.  William tells me that she doesn't realize that Mac is not like most alzheimer people he is much more aware, and knows even how many times he has been here.  Well not surprising since i mentioned it first thing as he came in...i said oh it's William - he's been here about three times now.

So tomorrow i will phone his superior, he gave me the phone #...I had phoned my social worker as I know and can see that they were not a good match..but my social worker is away..so will see how it works with the woman who is in charge of placing these people.

I know it's difficult for caretakers..I always try to tell them, just be natural, try not to come on with hearty hello's and so on, just be calm...Tell your name calmly, say I'm pleased to meet you.  You are new to Lachine, how do you like it??  Normal questions as you would do with anyone you have just met.  I find that this man, in particular, feels he has to talk loudly  and with a very  gruff voice, and he has an oriental Accent - it may be off - putting, but then...Mac finds anyone who has to stay with him off-putting, so who knows..Lately the woman I pay has also had problems, but again, she tries to talk a little as if he is a child, show us how you can open the door with the key..show us where the elevator is.   I know i would hate that...just treat me as a person who is okay...and know that I have a problem opening doors with a key, etc. and don't ask me to show anyone anything. So if anyone is reading this and has to be with someone with A. just remember they are still intelligent, the only thing is they have lost their memory.

Another problem with not having a good memory, the A. person may forget how to pull up zippers, or just where the toilet paper is, or how to flush...pull up their pants..or at times just where the toilet is .. With this in mind they may not feel comfortable to go to the toilet...may need to go and of course this will cause a problem as well.  I usually try to have Mac toileted, and have him seated with some food...kind of make  this  an event..have some cashews, grapes, cheese, crackers, gingerale, and have the two share it...the respite people always say NO thanks, just had lunch...but they could just wait and eat it later with Mac, will suggest this tomorrow...as you can see, i'm going to go to bed and lie awake with these kind of thoughts ...

In the meantime, we've had a good day with a great walk, enjoyed watching the kids learn to sail in their little sail boats...watched the gulls being mean to each other ...the mother duck being a sweetie and cuddling her 3 little ducks...checked out how many times the sun came out from behind the clouds...talked about the breeze being such a great way to chase away the humidity...smelled the wild roses and decided the aroma from wild roses is better than domesticated roses...then home to a dinner which gave us more than just food but food for thought and conversation...now I'll cuddle up with Mac, and hopefully sleep...g'nite.