Tuesday, January 29, 2013 Do you like this job???

It looks like sundown syndrome is now sun up as well.  That was the question Mac asked me as i was putting his coffee on the table...Do you like this job??  Kind of good that he realizes I do some work around here, but not why, so my answer was, yes I like this job as I really love you....he said, ' I think you are nice too, but you seem to work very hard'...Well i explained - not that hard i do have a cleaning lady every second week..and with that the subject was dropped as he went into early days mode - and St. Henri.

it's interesting that the bully who came to his street when he and others were playing hockey on the road...was his subject again, the story rarely varies,  This big kid comes along, new in his neighbouhood and starts to push him around...the other kids seem scared of him, and actually Mac himself was a little frightened as he was much bigger, but he got up the nerve and gave him a good punch or push..and the boy took off - while all the kids were laughing and saying good or bravo...as most of the kids he was playing with were French...

I remarked how interesting it is to see how bullying in our growing up days stays with us even till we are old...the memories stay ..and the memory of how happy he was when he popped that guy ...we then talked about the present time where bullying is talked about in the media and among our friends...but then abruptly the subject was changed to  "more coffee please' and looking at the news paper, we continued with gun control and how awful to have guns in the house....

And so the day went on, managed to go for a longer walk - around two blocks - and even to the nearby Zellers..and although he wouldn't take a shower today he has promised to take one tomorrow, if only to have me tell the ClSC,  NOT to send anyone to sponge bath him this week. 

This evening was a bit of downer time, as he searched his memory, for family, for friends and for someone to phone him,  I got 4 calls in a row, as many friends are wondering if he will be placed, how do i feel, and how am i coping; it's very sad and rather heart breaking, not to have him know ME, but he somehow does feel safe and happy with me, and I am happy to be with him, but it's my memories that are hard to take, they are my souvenirs but they cant be shared with him, i'm not really in HIS memory...and i guess i just have to live in my own memories and among my souvenirs...and try to share them, but when they can't be shared then it's - well it's very very sad...but must live in the moment, so i'll sit with him and watch t.v. and cuddle, that's the only way ..g'nite.

Monday, January 28, 2013 No i don't remember

When i ask Mac if he remembers various times, as for example, did you remember the great birthday party you had yesterday..wow the family gave you such nice gifts...the answer 'no i don't remember'  ..when this happens I usually try remember the food???  All the family, hey what a crowd eh?  "no I don't remember', then when I mention Finley, the great grandbaby...OH YES, she is such a cutie ...And she certainly is, she seems to know just how much he loves her, and she will reach out her little hands to him, hugs him, lays her head on his shoulder, and says AWW..  Well how wonderful for him, an how wonderful to see...so at least this he remembers in his recent memory bank,

But as we walked around the block in the snow today...hurrah, we did get out at last..we were starting to get cabin fever here.....he remembered past days way way back with his friends in St. henri..and mentioned a few names..but i was there or with him in those days, and he can't place me there at all..kind of odd..but then it's his memory, not mine.

I did mention a couple of songs - like when we broke up and got back together...nat king cole had a neat song for us which was.  I'll never say never,  never again.  Tonight I asked if he remembered and started singing half of that title ..  and as usual he was able to finish it... and then added ...and blah blah blah...well, guess that ended that memory session... he said..yes time for bed...are you coming..but then his eyes closed and he was off in dreamland..hope he has good dreams, then i will have some too...and hey maybe he'll have a little dream of me..must see if he rememabers that song tomorrow..g'nite

Thursday, january 2013 Where do you live?

Well that, believe it or not, is the question of the day, where do i live, usually it's where does he live, but I was able to tell him I live here at present.  Then of course, he talks about the confusion he lives in and how he has to figure out how to get to his other house.   We worked on that for some time, think he may be thinking of our little house up north.  So we went over some pictures, showing how high the snow is up there in other years, and of course this year,  well, look out the window...and how cold it is we sure can't go to your other house Mac.  Thankfully he agreed, just feeling the wind and cold as I brought in the mail was enough to turn us off from the thought of even going to the bank and grocery store.  Tomorrow's another day, so we will see then.

Not sure what part of the news got to him as i missed much of the news tonight; but when he was getting ready for bed he stated...The people of Quebec have got to have their rights..and I agree with them..after all they are a minority in Canada and they must at least have Quebec and therefore it has to be French.  I was really amazed at how well he said all this, as he is having speech problems along with everything else, but he has always been a strong advocate for French people and was a strong PQ supporter in Rene levesque's day.  i said well 'while you are at it, support "the idle no more' campaign, no one has been more suppressed than the Native people in Canada, even Amnesty International is there for the natives...so we both agreed that Chief Spence was wise to stop her hunger strike, and as I left him in bed; thinking well, is he ever on target, he called me back and asked...now where do you sleep??? o.k. he did pretty well there for 10 minutes so that's it..i'm going to where i sleep, right with him...g'nite.

Wednesday, January 23, 2013...Where can i get the train?

The days are starting to be just like the nights, in that Mac has  very little idea of just where he is..but he does know that he has to GO...problem is he doesn't know just where.  This afternoon, he was trying to figure out just where he had to go, and then it was, where can i get the train.  This problem lasted for about an hour, and finally i decided to put on old music with train motif...Got an old calendar with train pictures, put on Chatanooga Choo Choo, and we proceeded to shuffle to the music around the house.  Me hobbling with my sore knee (think my torn miniscus is back) mac doing his usual shuffle and shake routine.

Finally as we settled down, i found an old CN pensionners newsletter.  This was a godsend, he loved hearing about what different pensioners were doing ...and so we continued reading and talking about his days in CN, and just where all the trains go - who drives them, and he seemed to forget how much he wanted to get to the train station.  Then as i received a couple of phone calls, he proceeded to go downhill, mood wise, again, so managed to phone Gaye, our daughter (on the q.t.) and said, Gaye phoned she want's to speak to you.  Well that cheered him up and they had a good conversation.  Later did the same thing with Glenna, and from then on, the day went much better, his appetite was great and he enjoyed his dinner..

Tonight we had our good neighbours over, husband and wife, Lorraine and Rolf, Rolf helped him up the stairs to watch t.v. and so he was content..as we watched the news...now comes the hard part..going to bed, he is always wakeful at different times during the night...so then comes questions which can't be answered as they usually connect to something that he is dreaming about..sometimes it gets to be a bit hairy,  - i try to sleep in the other room, but then can't sleep for listening to see he is getting up, i'm always afraid he may fall down the stairs...and so it goes...i get back in bed with him.  But the weather outside is frightful, and the bed seems so delightful, so I'm going to bed, g'nite.

Sunday, January 20, 2013 Wonder where they are now???

Harking back to his days in St. Henri is one of Mac's great obsessions, sometimes he says "well guess I'll go home now, have you got the car here?"   To him some of those times when he says this, he means St. Henri, other times I'm not exactly sure where home is, and usually I can get him to understand that he is home - right here in Chateauguay, on Montcalm street.  Today he was looking at his picture - the one where he is playing Lacrosse, that is a favourite picture and a favourite game for him...and while looking at the picture he said, Wonder where they are now??  Then surprise, he started to name a few of the boys in his gang...

Remember, Dickie Rae,  Bob Painchaud, Freddy Hogan, Joe La Prestie, Earnie Jelly, The McQuaig family, Joe Taillon, Jim Stacey -  and on he went, with names, and at times I would say the first name he'd say the last and vice versa, it was quite fun, until he asked that question...Wonder where they are now???  Well we do know that many of them are now no longer alive, so I was hesitant to go there.  He said, - guess some of them are no longer with the living, but it was fun being in that gang.  We had a great time - and Lacrosse was a great game, and now it's all over...

When he started to look a bit sad - thinking there was no one left for him to see, i mentioned our family, and that we just saw son Les and our daughter-in-law last night...'did we?"  yes, i replied.  he said, 'But, there is just you and i now..I said, well we also saw Valerie, our daughter - Brianna our grandaughter, and dear Finley our great grandaughter, on Friday..Well again Finley saved the day...his face brightened up as he said, she knows just what she wants, she can scoot around so quickly, she is so terrific.  Thankfully her little face is in his mind and that way he comes back from the brink of depression. 

Today by way of distraction, i tried to play cards, to draw, or paint, to play checkers, etc.  but there was no way, the only kind of interest is music, so using music, we have been brightening up the day with walking to the beat of Rock Around The Clock...Johnny be Good ...and Boogie...He was great this evening listening to Randy Backman's Vinyl Tap..and then to some great music by Mozart..so it's on to the T.V. news, and soon it will be bed...Hopefully he walked around enough (in the house to the music) to give him a better night's sleep, which means a great night for me...last night was not the greatest..but that's the way it goes. 

Should also mention his phone calls, i try to get friends or one or two of our children to talk to him  - in case there are other's reading this who also have someone in the family with the big A.  phone calls even though they may seem very one sided are so appreciated...someone actually is talking to me; says mac.  Called Glenna to wish her a happy birthday, and asked her to speak to her dad.  Well that was also a happy few minutes for him; as was speaking to Maureen our youngest..  hummm maybe should get someone else to say goodnight to him besides me....well  mischa the cat will have to  do...so g'nite.

Friday, January 18, 2013....Hurrah hurrah hurrah!

and another hurrah, Mac was such a happy camper today...sitting on his chair in the lovely hot shower - we washed his hair, and he scrubbed away, and just almost lapped up the hot water as it fell over his head...All this because last week he had a man from the CLSC come to give him a sponge bath.   This has to be done in the kitchen as  apparently the man does not want to be responsible for Mac going upstairs - as Mac's very shaky on the stairs..  

This same man, Ghysline, was supposed to come today - not only to give a sponge bath, but  this time he was going to wash his hair - in the kitchen sink, don't ask, we don't have a spray thingie  ...So somehow as i said, I got mac in the bathtub safely, and out, and as he said it was heaven in the hot water shower...then I called to cancel the man...Well the man didn't get the message, and just showed up at one oclock today.   He will come again next Friday, and depending on my energy, will see what i can do to hear Hurrah hurrah hurrah again before the guy gets here.

In my last blog i spoke about how we laughed so much, well scratch that;soon after he was in bed,  all the bogie men came to bother him.  Poor Mac jumped and wrestled in his sleep, talked constantly, and at one point yelled and got up..and continued yelling.....so that was not fun, and certanly we didn't have a laugh, but I did manage to quiet him eventually, and got him back to sleep...

This is the problem with the disease, Alzheimer's patients have more and more problems at night...starting with the sundown syndrome where they do not know just where they are. and as we all know the problems grow with time rather than lessen.   This month as mentioned before is Alzheimer's month, i attended the Alzheimer's Cafe at the Atwater Library,  it was packed as Joe Schwartz spoke on the myths and facts of Alzheimers Disease...didn't know that Alzheimer was a doctor in Germany who discovered the brain pattern of a woman patient of his, and was the first to realize that the brain was gradually changing the way the woman was seeing the world...his research became the focus and the reason for the disease being called Alzheimer's.

Joe Schwartz, mentioned many other facts and myths, but the two main points i brought up were not addressed.  i.e.  WALKING...i have found that along with the meds that he taked about which prolong the disease but does not cure the disease, Walking - does so much for the brain as well, not only for the speech and the language, but for the body, physically...and since we have stopped walking so much, I have found the change almost dramatic, in speech, in language ability, and in physical i.e. getting up and down from chairs etc.  I know this would happen eventually, but the change was rapid after we stopped walking outdoors.   I have now started a new regine...a march - I put on great music, and we march around the house, do exercise.  i.e. i do, mac, gradually lifts his arms to about his waist level and down once or twice.
Anyway it's fun...The other point Joe did not address, is the fact that much is being discovered about
head injruies and concussions,  when I asked him about that he had no comments...

He did say that it is not necessarily true that family members will definitely get Alzheimer's i.e. hereditary - but said that it seems that less educated people are more prone to getting A., on the other hand it is not proved and that maybe with education comes better nutrition, and physical well being ...this in my own estimatiion is really not a factor, as every one I know that has the big A.in my own circle of friends  is very well educated but - i do believe the fact as he pointed out we all live longer and therefore it is one of the things out there and so to prolong it, do crossword puzzles, play chess, and speak and study  another language...i guess that's why i seem o.k., i've been constantly trying to speak and learn French...ha.

Well hurrah for Mac, and now it's time to wake him up - he's having a snooze, it's afternoon, that's why we have a long blog here...and he and I are going to march around the living room and sing...The Engllish live on St. George's St. the French they live in Cote St. paul, but the irish you can't beat for on old St. Patrick St. Every nation has it's treat in MONTREAL..  bye  xx

Monday, January 14, 2012....hey watch that no messing around...

 i just had such fun with mac before  bed.tonight that i decided to go online.....  i thought, darn his hair is so greasy, he must have a shower ..well we got half of him undressed and then he said, no way, i'm not getting in there.  So i put him on the bath chair, but beside the sink and tried to wash his hair with a face cloth...well it was hilarious, and he said one funny thing about it after another, i can never remember the sequence or what he says but i became almost hysterical with laughter..and while undressing him , it was 'hey watch that now no messing around.....

 

Then when he got in bed after his 3 different things, pill  patch and eyedrops, he said now you must leave me alone, stop messing around with me in bed...i know we're married -  - we are married right.  then he said what was i thinking - marrying you???then he makes a sweet face and says, it's o.k. i'm happy i married you.

 

.its so wonderful to have someone who makes me laugh so much.  He then went on to talk about our sweet great granbaby Finley...he said she is wonderful, she knows how to scoot around on her bum so fast, she laughs and is the perfect little baby..Wasn't .she was great last night at the restaurant.?..he remembered - wow!... but didn't remember that he himself was rather out of it, and cranky, and didn't eat any supper even tho it was to celebrate his own birthday.  But that's the way it is, and we who live with the Alzheimer's effects on our loved ones, have to know that we're the lucky ones, we are healthy, and try to be understanding, and helpful - also try to be cheerful and live in the moment..easier said than done.

 

But tonight i feel that we are both lucky, as we have had such a fun evening, and now hopefully a restful night...g'nite.

Sunday, January 13, 2013... How old am I?

Today was Mac's birthday...we celebrated with friends earlier in the day, at that time he asked ..how old am I, and later as family member's  phoned and a couple of friends emailed their good wishes  - he asked again, now how old am I...Tonight when we went to a restaurant to celebrate, with two of our daughters, Glenna and Valerie, plus our little Great Grandaughter, same question...Reminding him that he was 83, was getting to be quite funny, then when we returned home our son les phoned and again that question, guess it's a number one doesn't want to remember, then again, there are some things i'm noticing about this memory.

For example he has great problems getting up from sitting, and it was only tonight when i was on the computer earlier,  I realized, hey, I just about break my arm or my leg trying to help him out of the sofa in the t.v. room,yet, he often comes to see if  i'm on the computer or if i've brought Mischa the cat in for the night.  Now what's that all about, he get's up by himself, so decided to do something about that, so when it was time to turn off the news and get us ready for bed, said o.k. i noticed you can get up yourself, so i'll leave you to it, while i go down and give the cat his nightly snack.   Well up he got and sauntered out of the room, so judging from that, i said, o.k. now while you get your teeth brushed i'll go o.k. 

Surprise, when i came back upstairs, teeth were brushed, face washed, he had done all the bedtime stuff and was starting to take off his clothes -this is usually a big deal, and needs loads of help.. although he did need help, it was much easier and he did quite a bit by himself...

Going up an down the stairs was such a problem, his legs trembled, he was shaky and so i decided o.k. will get help, so had asked my grandson to come and help and i would only let him go up at night for bed and down in the morning.  Well Brandon came over a few times, and guess what...now,  although he is still very slow, he is quite confident, and going up and down the stairs......though I am trying something new, i make him walk around for a few minutes, both before going up and going down.   In any case I have to remember things are never the same all the time ,  so I will not get too excited, but I also asked him what's my name, because  earlier in the evening at the restaurant he said, 'who are you?' so i asked him my name, 'Janet", he said,and then i said,  remember my last name, and he said no, but then said McConnell, now i'm wondering - is this a game - guess not, but it's kind of interesting, so i'm going to try and tap into this ...my friend said when her mom who also has the big A.is angry, it's amazing how much she can do and remember...Maybe he was put off with me and so wanted to do everyithing himself...but then who knows..l  life in the A lane is sad, and at times very frustrating, and I have to watch my own temper...

but it's never boring and at times can be funny.  As when we went out earlier in the week and managed a short walk, i said take nice deep breaths of the fresh air, and he said...'look i do a lot for you , but i'm sure not going to take deep breaths'.  Another time while helping him dress, i said could you please turn around and face me, he said why would i want to face you, kind of insulting, but it made me  really laugh and so did  he, so now let's see what the night will be like, hopefully, i'll get a good night's sleep, so i can laugh again tomorrow, so g'nite.

Thursday, January 10, 2013 How did I get to have you ??

Actually had a bit of sunshine this afternoon, so saying a little prayer, decided  for a walk, not knowing if it was too slippery or just what out there.  Mac was all for it, until we started with the boots, scarves, jacket, hat etc.  which had him  kind of put off..but by then too late we were committed to a walk.  Then when we attempted the two steps down to the driveway from the balcony, I wondered what I could have been thinking, but we were committed and we did it....Walking was not hard, although looking at big puddles, which Mac thought were huge holes in the road was kind of scary for him especially when cars were passing.  So after one block he said, "we're going back and by the way how did I get to have you?

Well, that was kind of funny, as he said it with a crabby face, as in how unlucky is this, i'm stuck with you.  Ignored the kind of insult, by saying," well you may remember we met at Pine Beach, and you and I really kind of liked each other, and guess what, few years later we then loved each other and got married.  With that he, just looked at me and said, 'really, is that the way it was' - So onward back to the house and back to the steps, but we managed - and when we got in the door - Mac said who owns this place, - and back to those questions, and my usual answers of, we do and yes the whole house is ours. All this while taking off our outer clothes.   We are the only ones living here now, our five children are grown up and married, have their own homes..We'll probably see them this weekend...remember it's Baby Finley's first Birthday party..  Well should have mentioned that name before, as his face brigthtened up. 

So as he sat happily  in his chair, drinking coffee, and having cookies, he said, "I want to thank you, you are a really good girl"  - I said, 'don't mention it, I'm your wife, and love having afternoon snacks with you"  "oh that's right then this is our house, and we are married of course"  ..

.so it goes, his memory is so up and down, the rest of the afternoon was spent in trying to remember the place on the hill.  Finally it clicked with me, he is talking about the cottages up north, and the man he is thinking of there - at first i thought it was our son?, our former handy man,Arnold? " but "no he has a house too..and he is close to me," and then i got the man's name, Bruce his good friend...Almost feel like i've won the lotto, when I figure out who or what he is thinking about. 

We're upstairs now with the help of our grandson, and so i'll join him for the news on t.v.thankfully no more guessing games ..  g'nite.

Monday, January 7, 2013 Who was that person today

Remembering who came who went, who was here and when were they here, part of Mac's bedtime routine, and so it goes.  Today he had a man who delivered a seat to make bathroom use easier, a walker to help him get around and I thought that may be the different person but he said, no - just who was that prson here today, I said, do you mean Helen, 'yes, that it, she is a very nice girl" , and so she is, and we are so lucky to have her.

 My respite person they call her and that is what she does for me, and for Mac she gives a good sense of security...she has been coming now for the second year, how good that is.  The same person is so important.  When i went to my support group, not one person there has someone to rely on regularly, seems the respite person changes, or there is a problem with how they get along.  We, appreciate our Helen, and as Mac says, she is a very nice girl.

We are also fortunate with our family, all who try to do their best to make our lives easier, but sometimes it does get a little hairy and theres no one here except...me...that was the problem when we woke up, first Mac could hardly get out of bed his arms were so sore and weak, then his legs started to tremble and he almost fell down the stairs.  Then he was afraid to get on the toilet, and in fact he was almost afraid to sit down.  So thankfully we have the amazing chair, that he adores and he sat there for his breakfast.  This chair lays him down, sits him up and then almost pushes him up to standing.  Helen calls it his electric chair, which it is.  So that's where he had brekkie.  Thankfully CLSC and social worker came through for me and the man came with his new equipment.

Later in the day he tried out the new toilet seat, with arms on each side.  When he got the hang of it and found that he could use the arms to push himself off, he sang out 'hallelujah',  don't know what Leonard Cohen would think of that, but I laughed out loud.  The only piece of equipment i forgot about was a thingie to help him get out of bed...but i guess that will come soon...These items are on loan, as we know that soon we will have to move mac to a safer environment...so getting used to this thought is hard, but again,  it's one day at a time and live in the moment.  A good day, a good moment so a good night...

Friday, January 4, 2013 Who takes the cat downstairs?

From supper time on both last night and tonight, Mac has been a bit off target...last night it was his bank statement which he thought he had never seen.... ever...it took a couple of hours to get over that, then it took about another 20 minutes or so plus a phone call from Valerie to convince him that I was who i am...his wife Janet...then during the night he woke up completely disoriented and really angry about something, which he got over within minutes and went back to sleep, hurrah...Woke up in the morning his usual happy self, and so went the rest of the day.  BUT..

At supper time tonight he couldn't remember who would look after the cat.  When would the person come to give him his nightly snack and take the cat  to bed.  After several attempts to clarify that the person does not come over, the person is ME, and I live here; he let that matter drop, until he said - "now  Who takes the cat downstairs...I take him down stairs....stated by myself in no uncertain terms, he said, "oh well that's what I've been wondering about.'   Then surprise, the cat started to wail away....what is this all about I wondered, does the cat understand what we're talking about here...well no

Turns out, we had the sweetest little cat pressed against our patio door trying to get warm..a ginger cat with a little white bib..and there was our big aggressive tiger of a cat hunched up fur upright  hissing and wailing away at the poor little guy...we tried to entice our Mischa away from the door, well, that was a big problem, no way did he want that cat near our patio...so afte awhile we decided, neither cat can get through the glass so we left them be.. i checked the situation out ten minutes ago...and the little ginger cat has gone...hope he remembers where he lives.  ..our cat certainly does, although his master has a problem with that...and may have another place to live in the future ..which is another story...to be continued.

In the meantime right now all is well..and as we in our support group keep saying, live in the moment, and so we do try and so  at the moment all is  quiet, calm and peaceful, so time to say g'nite.

Wednesday, January 2, 2013...Watchout here comes engine #9

These cold days we've not been able to go out for our usual walks...also so many things and events happening during the holiday causing us to have to stay in.  With this in mind  I've noticed that Mac is not walking well, and as far as i'm concerned, walking is the best way for the brain to work well.  It therefore follows without walking  he isn't as on target or up to the mark.  Who knows it may still be the effects of the disease, but  to be sure, decided he should walk around the house.

While  I was taking down the decorations, and having him do some of the work, I asked him to walk around to the kitchen, dining room front room and back..several times going round and round...it got to be quite funny.  First he said, hey do i get paid for this, if so i demand 100$ per round...i said how about a chocolate...then he started to try to boogie as he walked...then became a guide as he pointed saying,  looking right out the window we see a most beautiful day, lovely white snow.  I interupted to say, so it's so nice want to go for a walk out doors...Forget that, says Mac, but then he started to walk a little better and a little faster, and as he came into the living room sang out , o.k. watchout here comes engine # 9...

Well he had me really laughing and what fun that is to see him so into what he was doing, walking I'm sure is the best...but and as i always say there always seems to be a but...When i had finished with the Christmas clean up, we waved goodbye to the tree, I brought down the boxes, fixed the lights so they'll work next year, and did all the sweeping of the pine needles and finally sat down...mac said, well you work too hard.  I said not to worry, i'm going to rest now..he said,  o.k.' then will you go home!!!...'   Well no i replied, guess what I am home.   "oh that's good says mac, not so far to go then. '  well actually that wasn't a joke though it may seem funny. 

Now he is having a good time watching a train movie about VIA rail going coast to coast..sadly i seem to have done something to his hearing ear phones, theyre not working, and so have the damn tv  so loud can hardly think.  Don't know if i ever mentioned, but his earing and vision, is the pits...so probably most people  know that visual perception problems go along with this disease...and his hearing has been quite bad for quite a few years, and along with his cane that rests in the corner , the hearing aids rest in a drawer to be checked out at a later date.

Jokes about memory are rampant on email, and i get a kick out of them, as my memory plays tricks on me as well, but it's kind of different when one sees how awful it is when one truly has a disease that makes one forget  almost everything in life.  Mac mentioned today how sad it is that his memory is gone, I said that is the disease Alzheimers...he said, well guess i'll just be happy that i'm still alive...and i said i'm happy you are too.  so with those words i'll say - g'nite