Monday, August 26, 2013 which one is cheaper....

Have mentioned before how much importance Mac attaches to $$$$, which I guess is normal if you are not too sure of just what is going on etc.  How would he live, where would he go, these are thoughts which would be normal for anyone who is unsure - hasn't a clue  - and in his case, doesn't know if he even has $$$$.   So yesterday after a lovely day at the market day at isle St. Bernard in Chateauguay, courtesy of Valerie (who drove us there and back) plus the fun of being with Brianna and Baby Finley ...we arrived back home happy and ready to settle in.  Although we had plenty to eat during the day, i gave Mac a choice of two different light suppers, soup and salad, or soup, corn on the cob and salad...his answer ....which one is cheaper...Try to explain that it's already in the house...we're not paying...well finally the message got through, and he made a decision....

So no matter how I try, it's difficult to spend money, especially HIS money...today we were able to enjoy time at the lake even though it looked like rain, it's always a treat regardless of weather, today's mist over the lake with the sun peeking through two blue-grey clouds, gave us a reason to leave a bit earlier than usual and go for groceries...Well Mac decided he would wait at the restaurant area, again, "no don't want anything don't spend your money i'm not hungry, but I'll just wait here"..so since we had just eaten muffins which i paid for at the 'Teapot" (seniors club on the lake) figured he would survive.  Of course he was fine when I arrived back, but today there were no samples at IGA super market, usually I take the sample rush to him and give him the sample and continue shopping, thus he is not sitting without me for too long as one could practically have a meal on the usual samples...

 when we were leaving he was - noticeably bothered..- then he said, 'you know, what would happen if you didn't come back, i said, well I always do - I know i didn't get samples to you so I guess it seemed kind of long...Well he said,  i don't have any papers in my wallet, don't know how much $$$ i have, - right away, i thought, he is right...what if I fainted, or fell or whatever... we discussed this and he was so understanding of his own problem...and of course mine.  When we got home, we went over the contents of his wallet, and realized his ID was not really correct...his old address, so i made him a new ID, I believe I can get him a special bracelet which he and i agreed would be good; in case he ever got lost somehow...this I will check out tomorrow with the Alzheimer's Assoc.   And of course we were back to how much would that cost, but he got over it...as he realizes cost is not the problem here. 

In any case he mentioned how he had been away didn't know about these things - also harked back to not having any knowledge of how or when his mom died...so besides telling him about that, and how maybe i could get some papers from that time showing this i said, you know we have to live in the moment, as your memory is so so short.  You probably don't remember yesterday, we were at isle st. Bernard...oh yes he said...the baby was there, Finley, she was bounding all over the place...so there she is again, the memory maker, the little miss marker in his life...what a blessing, and hey she doesn't cost us a cent...hurrah, - g'nite..

Friday, August 23, 2013 So how was your day.???....

Lately i've been writing about the abberations or the odd stuff that mac does, or doesn't do...but of course the day does have 24 hours and much of the time is spent happily walking talking, eating eating eating...oh o.k. we do too much of that but it doesn't show on Mac, just on me....so just to give an example of the happier moments of today.   Mac was all keen at about 4 o.clock to have dinner in the dining room...so decided o.k. let's eat there, even though we had our friend over for a fairly big lunch of quiche, salad, rolls, strawberries and yogurt, cookies..

.Dinner in the dining room is at 5, food is served around 5;30...so we usually sit with our 2 seat mates, Alice and Edith, but Edith was absent, so just Alice...and Mac seemed so happy to see her...and while we waited to be served turned to her and said...So how was your day???   I could see Alice was just delighted to tell him...usually she is a bit crabby and has much to say about staff that is negative, but not today...turns out she had a really good day.  Mac couldn't have been happier as he listened and commented...she had a brand new wheelchair..better fitting, and smaller, easier to manage;  another good thing was her daughter had sent her lovely large pictures...of herself and her beautiful home in Vancouver island with a view of the pacific ocean right in her back yard practically...and last but not least...Alice had managed to have a wonderful sleep last night waking up at 5;00 a.m. instead of 3;00 a.m. for a change...

He then went on to say how good the dinner was, pork chops done just right, mashed potatoes, turnips, and to start beef noodle soup...plus the finish...mac's favourite...sugar pie..(just for the record being a veggie, i had goberge salad and tomato juice)  .So as we left the dining room he waved and spoke to the people who spoke to him, and was completely happy with his life...but the piece de resistance...was our fantastic walk on the lake with the sun going down sending the most beautiful rays across the lake and through the leaves in the trees...all he could say constantly, was... this is beautiful, and it certainly was...

So back to our apartment and our usual little goodnight chat with our neighour downstairs...where he was the first to admire her new hairdo...and then told her about the sun down on the lake...when the girl Stephanie who prepares him for bed came for us..he said, ...have to leave but we'll be back...and surprise, when Stephanie said, 'well have a good weekend, i'm off till monday...'  he said 'oh i'm going to miss you'...well
Stephanie was so pleased...she turned to me and said, "hey did you hear that.." 

For mac  life is beautiful today...and so it is for me too..g'nite.

Thursday, August 22, 2013 This is a real puzzle......

 a busy day - we actually went to a neat shopping center by adaptive transport...bought a couple of gifts for birthdays coming up, did some food shopping, then sat and waited for the taxi....which was supposed to arrive at 3;00...but didn't arrive till 3;40...since we were there well before 3;00...the wait was anci for mac, he was actually wanting to just walk home...which would have been too far.  Sooo ended up having to leave him to pay for a phone call to the adaptive transport place (forgot my cell - good lesson here for me) I could see him and the taxi if it showed while I was on the phone....This caused me to be rather a basket case...#1..it was past time for mac's usual toilet time  #2 he could walk away somewhere to see if the taxi was coming and get lost....so after some time when i finally could speak to a real person...i could hardly talk, but the person was very good and told me he would switch to option 2...don't know what option 1 is, but option 2 was he would phone a taxi and get it there to us pronto...i was to just hold on...and just while i'm holding along comes our taxi, i could see through the window the taxi driver waving to mac to get in...mac sitting with 2 big bags...didn't seem to respond..

.I started to bang on the window, but that was useless, (so decided to ask the man who had been sitting nearby  having a friendly conversation with another man who had just left)...and in my broken french asked if he would tell the man on the phone all was o.k...well i could forget that... the man brusquely waved me away, and when i appealed again got up himself and left..so decided to just hang up...figured the transport man would understand, and ran out just in time as the taxi guy was about to leave..talk about a basket case I was so relieved that mac was o.k.i was near tears...   lesson here, always make sure to have my cell phone.....

This was not only upsetting for me, but for Mac too...who was trying to decide - who is who in this scenario, is this woman who is trying to get us home, his sister, his friend, just who is she..he was fairly quiet the rest of the day, and though he ate supper, he said, This is a real puzzle, do you know just where my family live;
We are here in this building, but should i be going somewhere else to be with my family...you are not my family....Where is my mother...

So since supper on and off -i.e. saying goodnight to a neighbour, mac's preposay getting him dressed and then back to putting the puzzle together, our two families, mine and his, i.e. our parents our sisters - his brother etc...are gone...right?  he will answer  yes that's right...now we have our own family, we are married, do you get that?   No...says mac, where is that family that is ours...Well we were married and now we have children, they are grown and have their children...what??? say's mac, that's not right why do they not live here...and so on and so on.  We go over it again and again. 

Mac is now in bed, he wants to wake up and do a diagram, and have it all explained that way... so when i kissed him goodnight - saying ...goodnight my husband,  he chuckled away...no,  he said, thats a joke right????  I just answered..well we'll do some more on that business of family tomorrow, in the meantime, i'm going to do some work on the computer and then I'll join you ...so thats what i'm going to do right now...join my husband, and thats no joke.....g'nite.

Wednesday, August 21, 2013 Where is the rest of it...

One of the features if you can call it that, of Mac's illness is that at times he seems to see quite well, picks up his pill no problem...other times he cannot see the pills, even if i put one in his hand...walking up or down stairs, clearly a perceptual problem, and a dangerous one as he is never too sure ...so we avoid stairs as much as possible.  Writing, reading, watching t.v. are all part of the past with some exceptions, in the case of watching t.v. as he does listen at times and seems to see some of what is going on, someone singing, perhaps, but shows, even children's shows which are animated used to be o.k. but they are out now too...so we listen to music, and this is still a part of his day, especially at this time from 8 to 9 listen to jazz on cbc f.m. 

All this to say  it was kind of funny when he was going to bed, yesterday, i passed him  his handkerchief and he kept spreading it out, saying "where is the rest of it...'I kept answering it's all there ...then I said - look it's your hanky...oh -he said  and then with a chuckle , i was thinking it was a flag....When something happens that's so kind of way out there,and kind of bizarre, he always just chuckles, and never says....'why am i having these sort of thoughts or in some cases as when he thinks there are more people....these hallucinations....i just gloss over these things...but i sure wonder

Today had a few friends drop in after our day out....which by the way went so well, he was in a good mood, and the woman from the clsc was also very happy...then Mac looked at me after she left and said, well what do we do now, go home???  I answered ...well actually we are home, this is our home...my 3 women friends all did a kind of double take, then just continued to talk.  Though at times these abberations bother me, they do so much less- especially since they don't bother him, he just goes along with my answer and is quite content, i start to think, gee does he wish we were back in our house...well no...it's just that ,now, no matter where we are...he really doesn't know where he is...

So obviously his real connection with reality, is ME...and it was never clearer than today...our friend who sometimes stays with him  - called, and while talking about various things, brought up the point that she found that Mac is not keen to eat lunch - until she tells him,  Jan prepared this lunch especially for you...then he says...oh jan made this, o.k. and sets to and eats it all...so even where food is concerned, it really has to come from the stable source in his life...Well since this is the case...i.e. I'm his reality..at times this is so sweet, but it also can be disconcerting, tiring and sometimes just too much pressure so I'd better stay well, and get enough sleep....so...g'nite.

Thursday, August 15, 2013 You are a liar......

After yesterday's sad scenario, happy to say this day was much much better, enjoyed the wind on the lake whipping the waves into foam, making us think of the ocean..it was fun, and of course the chocolate milk shakes on the way home ...made the ending of the day almost perfect, except....

Sundown syndrome strikes again, while i was making dinner, mac was sitting with a furrowed brow - which means heavy thinking time....so once everything was almost ready, i suggested we get washed - then sit down...well 'no way...i'm doing some thinking here, and am wondering why you are here'...well we've gone through this a few times, but not lately, so my stock answer in reply....' I'm your wife and that's why..', I've got some news for you says Mac...you are not my wife....My wife is Janet...so i put up my hand and said,  yup that's, me..."you - whoever you are YOU ARE A LIAR....even though i know it's the disease...that line always gets to me..I reacte, and say "i'm not...it's true etc etc...'  and he does the same as usual...who said so, and how can  you prove it...and how come I've never seen you till now.....this is almost like being in the old t.v. series "the twilight zone'...

No supper for me, I'm not eating with a liar...said mac, so I sat down and started eating myself...then asked if he would like to just go downstairs to the mail box which is right outside the door..to mail a card...Well says mac, i'm not going anywhere with a liar...So, i quickly decided to leave him alone, and go...he would have a weird feeling by himself, and may accept company, liar or not...Well sundown syndrome had hit our building in a big way...one of the residents who usually loves to just walk around - not allowed out has a special bracelet...had gotten out...two orderlies, were out trying to get him in...as I was going out...then once that session was over, i came in and another one who is not allowed out just charged right through the doors...all bells started ringing, and two more responders rushed out to get her...as i was going on our floor i noticed the same lady i saw on the way down, going round with a grocery push cart still walking around and around,  so when i came in called downstairs.  shortly thereafter heard them taking her to her home...so I casuallysaid to mac...gee people are really having a hard time settling down tonight...  must be catching, so think you should have your supper what do you think...'Well why not says mac, since you are finished, don't have to be with you....when he had finished, i said, one thing you have to do with me is the dishes....We always do dishes together....and he did them...and i just casually said..and we usually go for a short walk now...and so he did.......we dropped in to say goodnight to our friend...all was well...and his preposay, came in and all was normal,   'hello he said, we're just about ready for bed'  tell the truth, I was ready a long time ago,

And that ended his episode, hope it's ended for awhile, g'nite zzzzzzzzzzz

Wednesday, August 14, 2012 your days are numbered.....

Guess who told me that...none other than dear mac...he cannot stand to stay with the person from CLSC, and really I truly feel responsible for these words....We were having a lovely time chatting with our grandson in town from Calgary, and his mom...when at 1;30, along came the woman to stay with him when i was planning to leave.  This will never happen again, big mistake...even though i told him i'd be going out soon, he did not take it in, and for all of us to leave at the same time, well poor Mac "lost it"

His memory is the pits, but he remembers that he will not be left, he wants to go out on his own, or be left on his own, and that's that....he was angry  - frustrated, and was physically aggresive, to me...and according to the lady from CLSC, she will definitely have to report this...also when i phoned home twice to tell him i was coming home, after one hour away...he said...you come home, and boy your days are numbered....my friend who was driving me home could hear this and was really upset..but I knew it was the frustration, that causes this anger..and he would once i was home, forget all about it...This is exactly what happened...after discussing with me that he did not want me to leave without him..would not on any account have someone stay with him...he soon was able to be distracted..and on our walk said...i seem to have slept a good deal this afternoon,   well...really???  But did not go there.  just left it be...but definitely we've got to change our method and for sure never have any one in visiting and then leave...somehow i will work out a better way...

This is not the greatest day for sure, I'm not sure just how i will handle next Wednesday, as for sure i am going out and for a longer time....I can put myself in his position, and have to think how I would want to be left...a few clues happened when we were talking, he said,  i can understand that someone needs to be here to answer the phone, because i can't...also...he mentioned that I need help in the house now and again, so with that in mind ...maybe we can work out a better scenario..as anything would be better than today, g'nite.

Tuesday, August 13, 2013 Where do we go now.....

On our rather quick walk home- wanting  to beat the rain - that's the question mac asked, where do we go now?? Hello??  We had a lovely long walk, had a light supper at our little restaurant and then there we were on our way home; kind of surprising, as this walk i.e. along the lake is something we do just about every day, and then we go HOME, so guess, this is one of the sundown syndrome features..where are we and what are we doing, .but i must say he has improved in this respect that i had almost forgotten the signs of change that come right around that time...keeping him walking, talking, meeting people, and enjoying baseball games, and in some cases soccer games has been keeping the weird and sometimes sad moments that overtake him at sundown at bay...but since that was the only out of context question, i guess he's doing o.k. at sundown time.

One of our new friends here just died on Friday, have not heard how or why, but added to a couple of other sad bits of news, another friend just got the diagnosis of ALS yesterday, she has always been a shaker and mover,  told me the news today as she came to pick up my baking for a bake sale...plus another  friend's lovely dog finally had to be put down...i know can't think of a dog in the same context, but altogether sad news.  These bits of news seem to go over mac's head, he may say - how old was the person and if it's as it is in the case of the person who died, - 84...he says, as he did,  well he's old, he's had a good life.   i say to him well you've had a good life your 83...this doesn't mean a thing...Mac just does not, really get that he is old...and judging by all the compliments he got today, after his hair cut and beard cut...i guess it really doesn't matter, but it's sad he is  unable to share my sadness...he just goes along happily,maybe that's a good thing.

The barber was feeling bad, and said  - "he and i used to discuss so many things when  i cut his hair, but that's all gone" - it's strange some people can get mac to talk away, yet many who used to have great conversations, with him, like the Barber, are stuck trying to get him to converse, and all mac will say is yes, or no....i really don't know how to change this...he and I are together constantly, so we have our quiet times and our talking times and it's just easy  - but of course listening to him at times;as he forgets his train of thought, can't think of a word, or stutters;  being sad, not knowing where he is, and becoming completely frustrated, unable to eat properly  spilling things, having toilet accidents etc...these are all part of the big A....as i call alzheimers  and naturally it's hard, not devastating as it might seem but at times breaks little pieces of my heart but  -  for me a good day is when just one or two of these incidents take place...and so today was a good day...., and i'm looking forward to a good night...I am so happy he is still alive ,  still kisses, hugs and loves.to joke at my expense, and still tells me he loves me, so that's enough..g'nite.

Sunday, August 11, 2013 Do i take these to the bank....

Such a surprise to hear that question  Do i take these to the bank??? This,  as he took five 20's and one 10$ bill from his wallet...I replied - well no, you got them from the bank to spend - right???  'oh that's what they are for - said Mac... Well what about these cards ...medicare, bank card, opus card..etc... Well that is so so hard to hear, Mac has always been such a financial wizard, knew evey cent, added everything in his head, and always even recently asked how much things were, even if he couldn't really understand, knew that $$$ were important...and a big bone of contention was that he never saw his bank statements - even when i showed them and wrote a note to show that i had done so - putting the note in his drawer so he'd see it the next month when the statement came....but now or lately - it doesn't mean a thing...although he still keeps his wallet in his pocket and likes to know just where it is at all times...he may change but it's another door closing....so many doors of his mind  are shutting down...

So being here right now listening to michael Kaeshammer, playing boogie, and every few minutes i jump up and dance around him...and we both have a good laugh...is helping - helping me mainly....this is so necessary as i could cry and i'd rather laugh....So staying on course, enjoying our usual activities, like today's walk with Gaye, was great, and watching the para-sails or kites  being manipulated by the super guys out on the lake, doing spectacular jumps and somersaults it was such a pleasure...gotta love summer - sun water and the breezes  we surely do - this is our life, and at the same time our life-line...

I see the people on the second floor, who really come in being the same level as Mac, but then as they stay, here; they soon end up in wheelchairs, and sleep the day away...few visitors, and although they do get care its hurried and certainly not one-on-one...he certainly can't be on the third floor, which are the ones who are autonomous, they walk - talk, and enjoy, but are unable to go out...well mac is somewhere inbetween, but with me...he can do most everything, shop, talk, walk, and enjoy ...it pains me to think of these people watching us as we go out - they wish they could go too...but they know it's impossible and there is no one to take them ....Then there are the physically handicapped - with wheelchairs - canes etc...their minds are good but bodies are not...they feel the same way....

So all this to say, enjoy your health - and do your best to help those who are in poor health its' the best gift you can give them...your volunteer time - even for an hour....actually it will give you pleasure too.  well there's the brat cat mischa...yelling at mac and i for food,....his nightly snack, also.mac wants me to feed the cat....
so ..g'nite.

Wednesday, August 7, 1013 hey, joe we're over here!!!

Adaptive Transport  has been so good for mac and i...we've been out to the west island, we've been to the doc's, and  to mac's favourite place...St. Henri...just a couple of days ago, we had such fun with our friend Carolyn, and there surprise, mac remembered where he was...at first... no...we were walking along St. Antoine right near his home, but all of a sudden, even though Carolyn and i were mentioning St. henri spots he would know....the firestation, park, etc...when all of sudden he said,  We're in St. henri,  so smiling at each other Carolyn and i marched along with him to the park...there he revived an old friend and the memory of how all the gang he hung out with would wave a hanky, make out that their friend was kind of out of it..as they would stand on park benches..and yell 'hey joe we're over here!!!...and shy Joe, would say  "shut up you bloody fools"....we were not there at that time, but we could picture the whole scene, as Mac laughed and enjoyed this memory of his gang and his friend joe.

What a pleasure it is to have Mac able to enjoy memories, but not only memories but  nature, music, friends, family that is the real enjoyment - yesterday transport took us to our daughter's home - sitting out in her back yard, he took in her place, asking where are we...and no it didn't sink in, but being with others and being included is so important...even though he usually sits quietly not seeming to pay attention.   But when we returned home, and were talking to a resident here, he was able to say how much he enjoyed going to his daughter's home...yay!!

But, today, he had to have a person from CLSC, stay with him while i had 3 hours to be with friends on my own, - well that's no fun....he made it clear in no uncertain terms, that he must be able to go out by himself too...how i wish he could...no matter how i tried to explain that this is impossible, etc...it was no go..until, about an hour ago...he said  hmmm   'where is our bathroom now, I forget"  so pointing the way, I said, see mac, how important it is to have someone here for you...Well, said Mac,  I agree, you are right...Will he remember this next Wednesday....hmmm we'll see...

My friends today, said to me keep your chin up, you are doing a great job, and we're thinking of you....well I appreciate their concern, for of course it's not always fun and games...but it's my choice, and for me it's the best choice...how gratifying it is to have these moments, of seeing his enjoyment, his happy times, even tonight as we watched a ballgame over at the park, and he said, that was a good game, how super a fun way to end the day, and now it's bed time...so g'nite.

Sunday, August 4, 2013 oh yes i remember Westminster Central....

This is the story of mac's memory, and let's face it now it's getting to be for sure - non memory.....but tonight when we were saying good night to our favourite resident here at Floralies...Muriel...we got to talking about her younger days, and just what fun we used to have - what sports etc.  Turns out, that Muriel was quite a bandminton player in her day (she is 85 or so now)...and in passing she said, we used to play badminton at Westminster Central united....Well that perked up Mac's ears....'oh yes i remember Westminster Central United Church...', she was so surprised, but really...he should remember that...That is where we were married....

But sad to say, he remembered it as he used to go when he was very young...with his mom...and although i reminded him we were also married in that church, he really didn' respond...just said, oh yes I vaguely remember that.  Muriel was surprised he remembered the church, but then anything about his very early days often strikes a chord...and that is one....

I asked him if he remembered leslie being christened in that church, and he said Leslie???  Well reminded him leslie is our son, but as we could see, he was getting anci, worrying that he didn't remember, so both Muriel and I talked about non memory stuff...and then decided it is amazing what a small world it is...there are so many connections that she and i seem to have...its almost uncanny...and it makes Mac happy to hear our connections, and in this way we are in the present, my connections are his, and all is well.

living in the moment as we do, it is still wonderful to hear him as he says 'Wow isn't this beautiful,' and what to him is so beautiful???  The sun as it peeks out from the clouds...so it warms us both...and now to bed, and enjoy the warmth of his smile,  g'nite.

Saturday, August 3, 2013 Do i have to pay fo this coach....

So many nights just before bed, Mac kind of thinks we're on a train...or we're in a coach on a train, and last night he said "do i have to pay for this coach....', well I've set him straight on that score several times now, and often i wonder what makes him think we're on a train.  Our bedroom is certainly smaller than the one we had in our house, but not that small....but certainly speaking of trains, i wouldn't mind being on a train and going on a vacation somehwere.  I said that to Mac, but no way he sure doesn't want to travel...we received an email from a friend who is planning a trip to ireland - her husband has memory problems as well has had a couple of strokes,  and so i was surprised and this was my reply

 guess Tom is able to walk, dress himself and is toilet conscious....These things are all off and on with Mac, in fact dressing himself is hopeless, walking starts slow but by end of day of walking is great, toileting, well that's been a kind of on again off again ...and it's often good luck rather than good planning that we're near a bathroom  it's amazing how i have no compunction now about going into a ladies or mens (with him) whenever the moment commands....Brushing his teeth washing ....well o.k as long as i'm there, luckily the people we have to help us do that part evening and mornings, during the rest of the day - i take over. Talking, is o.k. not always able to think or get the correct words he wants, when that happens he says..oh to hell with it...but he enjoys the passing scenes, and others,  loves to be with people...  Sooo with these things in mind I'm contemplating a short trip (with him) to the nearest ocean, i'm just dying to see the ocean again  not sure if this will take place, but your email is encouraging me...Will you have someone along to help you or is this not necessary.

i really think though the idea of travel should be on the back burner, as one of the things i didn't mention, is that Mac has no memory of where the bathroom is in our own house, how would he cope  in a hotel or how would i cope without someone to help morning and night...there are so many things that Mac cannot do now - but these are the things he does enjoy, music is the mainstay of his life at home, and walking is his life outside....i was pleased that he could still get enjoyment watching baseball...watching soccer and kids playing basketball, and any kid playing, rollerblading, etc...  dogs, cats and now watching the men  wind surfing with large para kites
and of course he still loves to eat, but handling food can be difficult, and his visual perception sometimes makes the experience less than enjoyable, as he doesn't know if he has potatoes, carrots or whatever...all foods now have to be cut up, and so i think i should rethink travelling, but who knows...he is now travelling to dreamland, so i i should at least go there, it's away for sure...g'nite