A very busy Sunday, with weather that we try not to swear at.. more SNOW, as we plough through it from our friend Ginny's car on our way to Church...after all we are on our way to church...where we joined about sixteen people - then back home in time to have lunch with our sweet little twerp Finley, her mom Brianna, and grandmom Valerie....which is always such a delight especially that little sweetie...who charms us both ...though whenever anything happens to Finley i.e. she falls, or hurts herself ...poor Mac gets so wrought up - trying hard to figure out who or how or why she is crying. Thankfully he didn't dwell on it as he can get so upset trying to see "The Why"which is always hard for him...so after they left....i dutifully tried to explain why we were going to go to the advance poll in our building.
Rather a sad problem as in the past politics the why and how of politicians and the ins and outs of Quebec politics especially , would be Mac explaining everything to me...in any case - we did vote...after we left the polling station he said, 'now why did we do that."...So, again I tried to explain, which was kind of difficult as i had to discuss just who we were electing - names that really didn't ring a bell, except by saying Pauline Marois ..which did..or seemed to....but of course we don't put an X by her name but by the name of the person who represents the party of our choice...NOT PQ...but on and on I droned about WHY...we did vote, who votes etc etc...till I was boring myself...then I realized, I might as well just shut up...in five minutes he'll forget all about it...and of course he did...
This is something I sometimes forget (ha) and that is, just how long he remembers...for example when we went down for our nightly walk around, he said, 'i guess everyone is eating in the dining room' ..."no Mac we were there already for dinner..." it's 8 p.m. everyone is probably in bed or watching t.v., it's dark out there now, see..."oh have we had our dinner'...and so it goes..life is all right now...in this moment...which is at times kind of strange...in a conversation with my friend Kathy...she thinks it's wonderful that i can live in the moment...but actually I don't have a choice..so that's it...so there is no use getting all het up about anything, it's kind of good...on the other hand it does sometimes backfire as I get wrapped up in the moment, and forget to get ready on time for future activities..in fact we were planning (or I was) planning on Mac and I going for dinner in our dining room...which starts at 5:00 p.m. it was already 5:00 when i noticed the time...and so no preparation i.e. explaining to mac time for dinner...as we rushed downstairs...so no wonder he didn't remember - and that's the way life is ...for us anyway.
So if I'm not there for him in the moment...life is completely upside down...and that's what's just happened he is out of bed, wondering what's that clicking and where is janet..well here i am clicking on the computer so must get to bed and stop the clicking. now is the moment to sleep..g'nite.
Sunday 30 March 2014
Thursday 27 March 2014
Thursday, March 27, 2014... Where are we going.......
"Where are we going"...that's the question Mac asks every day, we could be going to the bathroom, out for lunch or just to bed...especially to bed as at that time, he is usually a bit disoriented and not sure where we are, but as i've mentioned before he has improved in many ways, or should i say, learned to just accept things as they are', the following paragraphs were in answer to an email to a friend which tells it like it is...
we've been here one year this month...and now we feel like (or i feel like) I'm home, so it will be that way with you too, eventually.
Yes it's sad to see the decline in our mates, but every day I'm thankful he's still here and I'm so happy he is able to walk, although really slowly..it's still wonderful in so many ways as he enjoys everything, the sun, the sky, the lake,going out for tea, or brunch... comments on this and appreciates ...I remember how he was such a person to stay in,in daytime... unless we were going skiing ..always had so much to do on-line and for various things, i.e. historical society...helping others with income tax...etc...etc.(for sure i'd rather he was like that still ), but since it can't be; we .now enjoy each day in slow motion, but each moment is precious..since, I'm not sure how long it will be when he won't be able to walk, I try not to think of that...as that is our most important occupation each day, 2nd to that is listening to cds and music...Remember how we used to do both these things i.e. walk and listen to records when we were teens..well hey we're back there ...ha.
my person for mac will be here. this week, .Debbie - the clsc has raised her time for me to 6 hours a week, 2 days 3 hrs each...but we'll see how that goes. my nights are not always as good as mac is a restless sleeper and sometimes up and around and can get very agitated... although yesterday a.m. was his agitated time, wouldn't eat brekkie,and would not cooperate for getting dressed, took about 2 hours to get him back to norm....cajoling and speaking softly and loving, which is sometimes maddening, but it works."
Trying to explain to the nurse that i want to see the doctor, became a lesson in patience, as she screens all requests, and decides - as i tried to tell her - i don't want sleeping pills, but something to make him stable at night so he won't be agitated in his sleep. She did get to the doc who came to see Mac when I was out.(darn) Debbie said he just asked mac how he was and has provided me with a prescription which should help apparently..i'm always afraid of pills and the side effects, so depending on just how he sleeps in the next few weeks i'll see. I will have to be desperate...to use them as i feel he has enough meds...
Anyway, that's the questiion still today "Where are we going, " and we are going, for our usual walk, and since it's a nice day we'll go to the lake, go to "the teapot' for lunch...continue our walk, till it's time to return home to see Glenna, our daughter who will be here for dinner tonight. We're so fortunate that our children are still in Quebec and we see all of them on a regular basis..important to keep reminding Mac that we do have kids, although he never believes they are our children, but he can feel the love and that's what's important.
So where are we going..we're going out..bye now..
Friday 21 March 2014
Friday, March 21, 2014 Oh that lttle twerp....
Yesterday, knowing that our daughter Glenna would be coming for dinner in the evening, I wanted to go over the names of our kids and kind of get him prepared to know or kind of know Glenna...So starting with - 'well you know we have five children, now adults, right/?" Answer by Mac, "you may have five kids, I don't" So just continuing on, I said, well there's Leslie, you know him eh?? "yes," then Gaye, he answered "Gaye,, yes'
Valerie, you know - she is the mother of Brianna, and our great grandbaby...- Finley...you know Finley...he replied, Finley, oh that little twerp..' ...well i just burst out laughing, and it still makes me smile and giggle, when i think of it...We continued on with Valerie, Glenna, and then Maureen, he seemed to be okay with hearing the names, but did not want to say them...so changed the subject..
Then when Glenna came, she was very good,she was working on our Cat Mischa, who being a long haired lazy cat..gets all kinds of knots and mats in his fur...so she was brushing him - using the electric razor on the big mats and generally causing the cat to be miserable and meowing..afterwards as she was just combing his fur and petting him to let him know she loved him...Mac got me to one side and said, "who let him do that, does the office know she is here"..and even when I tried to explain, Glenna was our daughter, a girl, and she was doing what was really needed to be done...Mac was not accepting that...'he has to stop - he should go, he should not be near the cat'...
Finally when he saw the cat was o,.k. and Glenna was actually having the cat purr and be friendly, he let up on his anger...I mentioned to Glenna, that he also had a little wine at lunch with our friends that were here for lunch, so that must stop, as i find that he does seem to become agitated and can show anger for small things..after having wine, .so that's a no no for sure...Actually my friend poured the wine without asking as mac always has his gingerale in a wine glass, so she was just doing it for everyone...i should have taken his glass, anyway, that's what I will do next time.
So in any case the little Twerp, Finley was here this evening, and as usual was her cute self, Mac enjoyed watching her, and even tried to pick her up, (too heavy for Mac). Later after she left, I mentioned how he had called her a little twerp the other day..."no i didn't...well not today I said - well he didn't remember that she was here today..and also didn't remember 'twerp', but that's the way it goes...at least he knows he loves her...and will enjoy her next time when she comes...and I will keep the memory of that sweet little twerp for sure....
Our life so is still great because of the little twerp and all of the family, not to forget our friends...and the people here...Stephanie his preposee tonight said to him - have a good weekend, see you monday...and he was so happy to say...Thank you...and have a good weekend...so that goes for the reader too - have a good weekend....g'nite.
Valerie, you know - she is the mother of Brianna, and our great grandbaby...- Finley...you know Finley...he replied, Finley, oh that little twerp..' ...well i just burst out laughing, and it still makes me smile and giggle, when i think of it...We continued on with Valerie, Glenna, and then Maureen, he seemed to be okay with hearing the names, but did not want to say them...so changed the subject..
Then when Glenna came, she was very good,she was working on our Cat Mischa, who being a long haired lazy cat..gets all kinds of knots and mats in his fur...so she was brushing him - using the electric razor on the big mats and generally causing the cat to be miserable and meowing..afterwards as she was just combing his fur and petting him to let him know she loved him...Mac got me to one side and said, "who let him do that, does the office know she is here"..and even when I tried to explain, Glenna was our daughter, a girl, and she was doing what was really needed to be done...Mac was not accepting that...'he has to stop - he should go, he should not be near the cat'...
Finally when he saw the cat was o,.k. and Glenna was actually having the cat purr and be friendly, he let up on his anger...I mentioned to Glenna, that he also had a little wine at lunch with our friends that were here for lunch, so that must stop, as i find that he does seem to become agitated and can show anger for small things..after having wine, .so that's a no no for sure...Actually my friend poured the wine without asking as mac always has his gingerale in a wine glass, so she was just doing it for everyone...i should have taken his glass, anyway, that's what I will do next time.
So in any case the little Twerp, Finley was here this evening, and as usual was her cute self, Mac enjoyed watching her, and even tried to pick her up, (too heavy for Mac). Later after she left, I mentioned how he had called her a little twerp the other day..."no i didn't...well not today I said - well he didn't remember that she was here today..and also didn't remember 'twerp', but that's the way it goes...at least he knows he loves her...and will enjoy her next time when she comes...and I will keep the memory of that sweet little twerp for sure....
Our life so is still great because of the little twerp and all of the family, not to forget our friends...and the people here...Stephanie his preposee tonight said to him - have a good weekend, see you monday...and he was so happy to say...Thank you...and have a good weekend...so that goes for the reader too - have a good weekend....g'nite.
Saturday 15 March 2014
Saturday, March 15, 2014 Laporte Street, i remember ......
Had to get this in my blog right away, how exciting, Mac has not been reminicing for a long time, hardly ever goes back to the days in St. Henri, in fact can't remember the last time he talked about remembering anything, so a red letter day. We were at the Atwater Library..a young woman, Liz, asked us to come to do a Virtual Memory Box..She met us at the Alzheimer's Cafe, where she spoke about her project. I inquired, and she said she would get in touch with us about this project and she did.
This Virtual Memory Box, is a way of getting A. patients and caregivers to talk together with Liz about the pictures and memorabilia they have - she then asks them to sort throught the articles and pictures and decide to arrange them in a way that they can be presented through a kind of on-line movie...As usual I put the ideas i had plus the planning of the pictures off to a rather late time, i.e. last night...so threw whatever i had around in an envelope and today, off we went to the Library - using Transport Taxi...
Well the memory part obviously worked, as when we were sorting the pictures and talking to Liz about the pictures, three of which I pointed out were taken on Laporte Street...Mac livened up saying...Laporte Street, I remember, going down those stairs.- he pointed to the picture - ..then, there was a train nearby, and on the street i would go straight straight down to the end and there was my school...It's not there anymore"...What school?? said Liz, all excited, and he tried to remember so I interjected Louis Evans...then Liz said, "this is terrific, I live in St. Heni..on St. Jacques near Descourcelles...how happy Mac was to talk about st. Henri, as he launched into a story he used to tell quite frequently...but certainly not for the past year...and that is how a big bully who was French came and started blustering and pushing ...then Mac said, we were all like family on the street, even though my family was practically the only English one, we all were friends ...and when I punched the guy who was pushing me, he ran away...and even the French kids were happy...he was not from our street.' Well he repeated this story in several different ways about three times...
Then Liz showed him one of the pictures, one in which he and I are celebrating my High School Grad night. We were at the Normandy roof - which used to be the top of Mount Royal Hotel, a fine wine and dining room, considered one of the finest in Montreal at that time..we thought we were quite the adults, in fact I had my long hair cut and curled for the occasion. Liz said do you know who these people are...Mac answered A boy and a girl....so that's how she labeled it. He talked a little more about his mother being in St. Henri, and although we tried to get him to respond to the pictures of his sisters he took some interest, and only seemed to respond a little to the dog in the picture. I said that dog is your mom's dog, Lady..do you remember Lady, well he said "I am trying to remember, but it was a long time ago."
Whenever he can't remember,that is what he always says ...and so after that he was not as keen, but the whole process was fun...and it was as if he woke up from a long sleep and had a real perky conversation, that excited both us and him...and he smiled and reacted in such a positivie way, it literally made my day...and for Liz, the excitement never left....and though she and her boyfriend tried again and again, he was not responding quite the same, but before the memory leaves me, i want to report it...here in the blog...we're home now and it's time for supper so - a bientot...
This Virtual Memory Box, is a way of getting A. patients and caregivers to talk together with Liz about the pictures and memorabilia they have - she then asks them to sort throught the articles and pictures and decide to arrange them in a way that they can be presented through a kind of on-line movie...As usual I put the ideas i had plus the planning of the pictures off to a rather late time, i.e. last night...so threw whatever i had around in an envelope and today, off we went to the Library - using Transport Taxi...
Well the memory part obviously worked, as when we were sorting the pictures and talking to Liz about the pictures, three of which I pointed out were taken on Laporte Street...Mac livened up saying...Laporte Street, I remember, going down those stairs.- he pointed to the picture - ..then, there was a train nearby, and on the street i would go straight straight down to the end and there was my school...It's not there anymore"...What school?? said Liz, all excited, and he tried to remember so I interjected Louis Evans...then Liz said, "this is terrific, I live in St. Heni..on St. Jacques near Descourcelles...how happy Mac was to talk about st. Henri, as he launched into a story he used to tell quite frequently...but certainly not for the past year...and that is how a big bully who was French came and started blustering and pushing ...then Mac said, we were all like family on the street, even though my family was practically the only English one, we all were friends ...and when I punched the guy who was pushing me, he ran away...and even the French kids were happy...he was not from our street.' Well he repeated this story in several different ways about three times...
Then Liz showed him one of the pictures, one in which he and I are celebrating my High School Grad night. We were at the Normandy roof - which used to be the top of Mount Royal Hotel, a fine wine and dining room, considered one of the finest in Montreal at that time..we thought we were quite the adults, in fact I had my long hair cut and curled for the occasion. Liz said do you know who these people are...Mac answered A boy and a girl....so that's how she labeled it. He talked a little more about his mother being in St. Henri, and although we tried to get him to respond to the pictures of his sisters he took some interest, and only seemed to respond a little to the dog in the picture. I said that dog is your mom's dog, Lady..do you remember Lady, well he said "I am trying to remember, but it was a long time ago."
Whenever he can't remember,that is what he always says ...and so after that he was not as keen, but the whole process was fun...and it was as if he woke up from a long sleep and had a real perky conversation, that excited both us and him...and he smiled and reacted in such a positivie way, it literally made my day...and for Liz, the excitement never left....and though she and her boyfriend tried again and again, he was not responding quite the same, but before the memory leaves me, i want to report it...here in the blog...we're home now and it's time for supper so - a bientot...
Thursday 13 March 2014
Thursday, March 13, 2014 I"m confused tonight.....
Actually, that's what mac said last night "Im confused tonight...' just as I was crawling in bed with my good book...so I answered ..."I'm just going to be here reading my book, so, why don't you close your eyes and try to sleep, in the morning you will probably be o.k. If you can't sleep and still feel confused - we can talk about it but try closing your eyes first"..Really didn't think that would work, but surprise it did...But even though he did not discuss that in the morning, that is, he didn't say he was confused..Mac did try to figure out why he couldn't remember some particular thing (which i can't remember now - ha)...so I just go into my usual litany, you have a memory problem, it's called Alzheimer's, and it means you don't remember ...so we just live in the moment...right now is what's important...what we did yesterday was great, but what we do today will be fun too, so let's just live for today...
Right, what's on for today...replied Mac...Well today we have to take Mischa for grooming...He is going to get all his mats and knots cut out of his fur...Paul will drive us..hopefully. But look out at the weather it's blowing - and there's lots of snow...Not too long after that conversation, Paul phoned and all was well, he would come soon and take us - and he did...Now poor Mischa has no fur on one side at his hind end and not too much on his rear either...but he wasn't unhappy...and it all took 10 minutes..The drive there and back was not too bad either. The snow though high was cleared away on the road, and the sun was fantastic, so beautiful, just the way Mac loves it.
We also went to the teapot for lunch, where a lady spent a good part of her lunch watching Mac - she had told us friends were coming and so we couldn't sit at her table, turns out her friends didn't show, ??? When Mac eats he is not always careful, sometimes drops food, and instead of using his fork uses his fingers...so she was intrigued or maybe disgusted, but who cares...we sat with a nice couple of women and Frank the driver of the Teapot bus...and i tried to avoid looking at her looking at Mac, - anyway, most people are friendly, helpful, and understand...so really it's not a big problem - or not so far..No one has commented on the fact that he and i go in the ladies room together..and that's another good thing...but i always wonder why Mac never comments, but he just goes along happily, into the bathroom with me- never notices that no men are in there with us only ladies...so there we have another so far so good .
I realize not everyone who has a husband or wife with A. is as cheeky, but I think that given the situation, most people are helpful...We met another woman with her husband there, he has A. as well, but she has a person (paid) to help, she just can't manage on her own- finds her husband too hard to handle..tells me how much he wanders away from her and may get hit by a car etc. Funny though when we were there the person who wandered the most was the woman, talking to others and wandering around, leaving her husband to stand with the paid person..in fact she was giving people a poem.
This is it; Alzheimer's Request
Do not ask me to remember, don't try to make me understand,
let me rest and know you're with me, kiss my cheek and hold my hand
I'm confused beyond your concept, I'm sad and sick and lost
All i know is that i need you to be with me at all cost
Do not lose patience with me,
Do not scold or curse or cry
i can't help the wayi i am acting
I can't be different though I try.
just remember that I need you
That the best of me is gone.
please do not fail to stand beside me,
love me until my life is gone.
Well that's why she was running around, it is a sad but true poem,
For one thing it makes one remember that the person with A. is the one who needs sympathy not the caregiver...we're the lucky ones, we are healthy... But I must say, that for Mac, he needs sympathy, but at the same time he does enjoy or seem to most of the time. As long as we try to work on his confusion, or explain as much as possible what's going on he tries to go with the flow, and i really admire him for that.
Have to thank eveyone for their thoughts and comments on my blog, especially those who have sent me videos and ideas for videos thanks so much... here's one comment
"I was just reading your blog, and I just had to write back to you. I'm so impressed with both of you! You're obviously both working hard and getting well-deserved results! Caring, motivation and patience accomplish a lot. Others in a similar situation who read your blog will surely benefit. I'm sure the book version will be a best seller!
Sasha is bored looking out of the 11th floor window. She needs more stimulation. So, every day
she watches her bird and mouse videos on my computer. She loves it! She will sit on a chair close to the screen and focus for 30 minutes! At supper time she takes a break to go eat and then returns to the computer. I entertain myself by watching Sasha. This could be an equally enter-taining activity for your whole family: you, Mac and Mischa. Go to U-tube and type in either:
Feeding the Birds or Videos for your Cat--Red Winged Black Birds. Let me know how it turns out.
Gotta go,"
I have to go to, Mac will be waiting, I know...he doesn't sleep soundly till i'm there,so g'nite...
Right, what's on for today...replied Mac...Well today we have to take Mischa for grooming...He is going to get all his mats and knots cut out of his fur...Paul will drive us..hopefully. But look out at the weather it's blowing - and there's lots of snow...Not too long after that conversation, Paul phoned and all was well, he would come soon and take us - and he did...Now poor Mischa has no fur on one side at his hind end and not too much on his rear either...but he wasn't unhappy...and it all took 10 minutes..The drive there and back was not too bad either. The snow though high was cleared away on the road, and the sun was fantastic, so beautiful, just the way Mac loves it.
We also went to the teapot for lunch, where a lady spent a good part of her lunch watching Mac - she had told us friends were coming and so we couldn't sit at her table, turns out her friends didn't show, ??? When Mac eats he is not always careful, sometimes drops food, and instead of using his fork uses his fingers...so she was intrigued or maybe disgusted, but who cares...we sat with a nice couple of women and Frank the driver of the Teapot bus...and i tried to avoid looking at her looking at Mac, - anyway, most people are friendly, helpful, and understand...so really it's not a big problem - or not so far..No one has commented on the fact that he and i go in the ladies room together..and that's another good thing...but i always wonder why Mac never comments, but he just goes along happily, into the bathroom with me- never notices that no men are in there with us only ladies...so there we have another so far so good .
I realize not everyone who has a husband or wife with A. is as cheeky, but I think that given the situation, most people are helpful...We met another woman with her husband there, he has A. as well, but she has a person (paid) to help, she just can't manage on her own- finds her husband too hard to handle..tells me how much he wanders away from her and may get hit by a car etc. Funny though when we were there the person who wandered the most was the woman, talking to others and wandering around, leaving her husband to stand with the paid person..in fact she was giving people a poem.
This is it; Alzheimer's Request
Do not ask me to remember, don't try to make me understand,
let me rest and know you're with me, kiss my cheek and hold my hand
I'm confused beyond your concept, I'm sad and sick and lost
All i know is that i need you to be with me at all cost
Do not lose patience with me,
Do not scold or curse or cry
i can't help the wayi i am acting
I can't be different though I try.
just remember that I need you
That the best of me is gone.
please do not fail to stand beside me,
love me until my life is gone.
Well that's why she was running around, it is a sad but true poem,
For one thing it makes one remember that the person with A. is the one who needs sympathy not the caregiver...we're the lucky ones, we are healthy... But I must say, that for Mac, he needs sympathy, but at the same time he does enjoy or seem to most of the time. As long as we try to work on his confusion, or explain as much as possible what's going on he tries to go with the flow, and i really admire him for that.
Have to thank eveyone for their thoughts and comments on my blog, especially those who have sent me videos and ideas for videos thanks so much... here's one comment
"I was just reading your blog, and I just had to write back to you. I'm so impressed with both of you! You're obviously both working hard and getting well-deserved results! Caring, motivation and patience accomplish a lot. Others in a similar situation who read your blog will surely benefit. I'm sure the book version will be a best seller!
Sasha is bored looking out of the 11th floor window. She needs more stimulation. So, every day
she watches her bird and mouse videos on my computer. She loves it! She will sit on a chair close to the screen and focus for 30 minutes! At supper time she takes a break to go eat and then returns to the computer. I entertain myself by watching Sasha. This could be an equally enter-taining activity for your whole family: you, Mac and Mischa. Go to U-tube and type in either:
Feeding the Birds or Videos for your Cat--Red Winged Black Birds. Let me know how it turns out.
Gotta go,"
I have to go to, Mac will be waiting, I know...he doesn't sleep soundly till i'm there,so g'nite...
Tuesday 11 March 2014
Tuesday, March 10, 2014 Someone is looking for me....
Tonight while speaking on the phone, Mac sent me a visual message, he made the sign of yak yaking with his hands, in other words - stop talking on the telephone. So, I took the big hint, told my friend, Mac wants me to get off the phone, so speak to you later...When I hung up, he got out of his chair, and said, Someone is looking for me over there" he pointed to the window behind my head..'they are wondering where i am...Well i answered, i'll tell them when they call, that you were very tired, and wanted to get to bed.' That answer, seemed to be the right one, and so onward to brushing teeth, washing and getting his pills eyedrops and finally he was in bed, he was so tired his eyes closed immediately..
Looking back on his condition, I've been trying to decide just where he is in the scheme of the various stages of Alzheimers...and i'm finding that in many ways he is much better, although he does get very tired, needs to rest - especially when we walk in lots of snow..which i guess makes sense, walking through snow with big boots is not exactly easy for elderly people, so in his condition it's even harder, plus the fact that his perception is not always good, i.e. stepping up and down at curbs for example is often a problem- especially when snow has not been cleared away..but on the whole, he has a much much more relaxed attitude to everything, including walking, he is not so stiff or afraid.
The usual line about having a big gap in his memory - i.e. things seem to be there, but he can't grasp them...this no longer seems to haunt him. Now for sure, since I'm mentioning it, it probably will ..but there are quite a few differences that seem to be a positive difference.
Disturbing jolts of his body, especially during the night, no longer seem to happen, he has been sleeping whole nights through..approximately 3 or 4 nights a week. During our walks, he does not comment too much on what he sees nnow , but still can mention the main ones..such as the men who are bald but go out in freezing weather without a hat...kids who go along the street with their coats wide open..people who are obese and his favourite - little kids who march along so happily in their snowsuits this last one makes him laugh..and really enjoy. So we still live i n "the moment" but our moments of discussion are fewer and further apart. He still puts on his boots -after not being able to for approx one year...this, for me, is a godsend, as it used to be such an effort and would tire me before i could put onmy own boots ..his new boots from Gaye and Val, are especially great - with velcro binding.
He has no interest in reading, looking at pictures, t.v., or movies, but he is taking a bit of an interest in youtube items that people send, today's was how starlings by the millions all turn and move in the same direction, seemingly one leads but who would know which one..they all land at the same time etc...sometimes it's to do with music...or animals, kittens etc..these he enjoys..but still the main interest is listening to music. jazz or classics.
Today was the monthly birthday party..a girl sang in French (mostly) with a man playing the accordian..interesting to see that Mac would do the same as he does at home when listening to music..he closes his eyes - and moves his head, sometimes his hands or his feet in time to the music and really enjoys.. So far so good, as apart from walking outdoors...and indoors and of course eating....this is the one real enjoyment.This is great as we still can go to concerts, symphonies and so the Arian Symphony coming up Sunday will be something we can both enjoy.
I've just finished reading Brain on Fire, a memoir about a woman reporter for the New york post, her brain caused her to have a month of madness the reason for this was something really rare, but now - especially since her case, more and more people are being diagnosed with - autoimmune encephalitis - apparently as well, many still are being misdiagnosed as many neurologists are completely unaware of this condition...in any case in one part of the book she states 'the brain is resilient it can create new neurons and make new connections..."How wonderfl it would be if mac's brain could make new connections..but apparently in the case of A..a plaque covers and reduces the brain... i'm beginning to wonder if somehow this new or seemingly new diagnosis and cure could help to find a cure for the BIG A...would that ever be wonderful.
Well, before someone wakes up - namely Mac - and starts looking for me, I guess I'd better get to bed..so g'nite.
Looking back on his condition, I've been trying to decide just where he is in the scheme of the various stages of Alzheimers...and i'm finding that in many ways he is much better, although he does get very tired, needs to rest - especially when we walk in lots of snow..which i guess makes sense, walking through snow with big boots is not exactly easy for elderly people, so in his condition it's even harder, plus the fact that his perception is not always good, i.e. stepping up and down at curbs for example is often a problem- especially when snow has not been cleared away..but on the whole, he has a much much more relaxed attitude to everything, including walking, he is not so stiff or afraid.
The usual line about having a big gap in his memory - i.e. things seem to be there, but he can't grasp them...this no longer seems to haunt him. Now for sure, since I'm mentioning it, it probably will ..but there are quite a few differences that seem to be a positive difference.
Disturbing jolts of his body, especially during the night, no longer seem to happen, he has been sleeping whole nights through..approximately 3 or 4 nights a week. During our walks, he does not comment too much on what he sees nnow , but still can mention the main ones..such as the men who are bald but go out in freezing weather without a hat...kids who go along the street with their coats wide open..people who are obese and his favourite - little kids who march along so happily in their snowsuits this last one makes him laugh..and really enjoy. So we still live i n "the moment" but our moments of discussion are fewer and further apart. He still puts on his boots -after not being able to for approx one year...this, for me, is a godsend, as it used to be such an effort and would tire me before i could put onmy own boots ..his new boots from Gaye and Val, are especially great - with velcro binding.
He has no interest in reading, looking at pictures, t.v., or movies, but he is taking a bit of an interest in youtube items that people send, today's was how starlings by the millions all turn and move in the same direction, seemingly one leads but who would know which one..they all land at the same time etc...sometimes it's to do with music...or animals, kittens etc..these he enjoys..but still the main interest is listening to music. jazz or classics.
Today was the monthly birthday party..a girl sang in French (mostly) with a man playing the accordian..interesting to see that Mac would do the same as he does at home when listening to music..he closes his eyes - and moves his head, sometimes his hands or his feet in time to the music and really enjoys.. So far so good, as apart from walking outdoors...and indoors and of course eating....this is the one real enjoyment.This is great as we still can go to concerts, symphonies and so the Arian Symphony coming up Sunday will be something we can both enjoy.
I've just finished reading Brain on Fire, a memoir about a woman reporter for the New york post, her brain caused her to have a month of madness the reason for this was something really rare, but now - especially since her case, more and more people are being diagnosed with - autoimmune encephalitis - apparently as well, many still are being misdiagnosed as many neurologists are completely unaware of this condition...in any case in one part of the book she states 'the brain is resilient it can create new neurons and make new connections..."How wonderfl it would be if mac's brain could make new connections..but apparently in the case of A..a plaque covers and reduces the brain... i'm beginning to wonder if somehow this new or seemingly new diagnosis and cure could help to find a cure for the BIG A...would that ever be wonderful.
Well, before someone wakes up - namely Mac - and starts looking for me, I guess I'd better get to bed..so g'nite.
Tuesday 4 March 2014
March 4, 2014 Tuesday I have a question for you.....
Tonight while i was cycling away on the stationary bike in the Activities room, Mac was watching me with the furrow between his eyebrows, which means - deep thinking. Sure enought, when i got off the bike (big deal i stay on for about 5-10 min) Mac said, "I have a question for you..." I usually get a bit anxious as it could be something that makes us have to talk all night in circles...re; his mother, his money, his bank account...but tonight's question was...You are a girl - right?? Well that's easy, yes, for sure, i answered. 'Well then, said Mac..we have got to stop being together'...Why, was my reply...For one thing, he said, I'm not married and I really don't know you that well ...people will be wondering about us.."
Well, that, I knew meant we'd have this conversation for a good part of the night, and I was right....When i said we were married, he laughed so spontaneously that I thought...o.k. it's funny, but we have to be together, so let's get serious here...Sure i said we really are ...no, he said,we are not, and i don't want people talking and looking at us..it's not right...This while we are doing our little nightly walk, and people are looking at us and waving, and mac is waving shyly back..and murmuring see we should not hold hands...stop holding my hand. So i stopped...and tried distracting as we then picked up a pile of mail...stopped to say goodnight to our friend Muriel. since she was not feeling too well, he was able to think about that for a bit...but the conversation continued in this line ..right up to when we were brushing our teeth before bed.
With him saying, o.k. what is your name? it's janet right - but what's your last name...'i answered same as yours, McConnell..then i said, look mac, I have papers and pictures to prove we are married, so please, just stop worrying about the neighbours and the people here...They know we are married, and I have proof..
.well with that, he turned and said, 'oh isn't that's great, good, I'm so happy" end of story.
Well it won't really be the end as it will probably all come up again, but who knows where or when.
.
Another little story today - Mac came with me to an Alzheimer's support group meeting, sat near the group, with his eyes closed...when we were leaving, they all said goodbye and hope to see him again...these 5 people all spoke about the big A. and how it effected their mother, wife, husbands..so I was surprised when he answered, "well you may see me again, but don't expect me to remember what you were talking about, as it was all noise to me'...he said this rather in sperts, as sometimes his words don't come out too clearly, but they understood, and one said, "well you will just have to join us at the table.' That was rather a surprising answer too..as we are supposed to be talking about our husbands etc..but for sure he won't really listen, or I don't think so...
One thing we all agreed on when one of the group reported that a nurse said that when a person with A..acts aggresively and like an Ass hole, (the nurse's term)..they were always an Ass hole...WELL we all agreed that that was entirely unprofessional, and for sure NOT TRUE...
well it's been an interesting , tiring day and my thoughts and writing as usual are going down the tubes...so onward to bed and to my husband...whether he thinks i'm his wife or not..g'nite...
Well, that, I knew meant we'd have this conversation for a good part of the night, and I was right....When i said we were married, he laughed so spontaneously that I thought...o.k. it's funny, but we have to be together, so let's get serious here...Sure i said we really are ...no, he said,we are not, and i don't want people talking and looking at us..it's not right...This while we are doing our little nightly walk, and people are looking at us and waving, and mac is waving shyly back..and murmuring see we should not hold hands...stop holding my hand. So i stopped...and tried distracting as we then picked up a pile of mail...stopped to say goodnight to our friend Muriel. since she was not feeling too well, he was able to think about that for a bit...but the conversation continued in this line ..right up to when we were brushing our teeth before bed.
With him saying, o.k. what is your name? it's janet right - but what's your last name...'i answered same as yours, McConnell..then i said, look mac, I have papers and pictures to prove we are married, so please, just stop worrying about the neighbours and the people here...They know we are married, and I have proof..
.well with that, he turned and said, 'oh isn't that's great, good, I'm so happy" end of story.
Well it won't really be the end as it will probably all come up again, but who knows where or when.
.
Another little story today - Mac came with me to an Alzheimer's support group meeting, sat near the group, with his eyes closed...when we were leaving, they all said goodbye and hope to see him again...these 5 people all spoke about the big A. and how it effected their mother, wife, husbands..so I was surprised when he answered, "well you may see me again, but don't expect me to remember what you were talking about, as it was all noise to me'...he said this rather in sperts, as sometimes his words don't come out too clearly, but they understood, and one said, "well you will just have to join us at the table.' That was rather a surprising answer too..as we are supposed to be talking about our husbands etc..but for sure he won't really listen, or I don't think so...
One thing we all agreed on when one of the group reported that a nurse said that when a person with A..acts aggresively and like an Ass hole, (the nurse's term)..they were always an Ass hole...WELL we all agreed that that was entirely unprofessional, and for sure NOT TRUE...
well it's been an interesting , tiring day and my thoughts and writing as usual are going down the tubes...so onward to bed and to my husband...whether he thinks i'm his wife or not..g'nite...
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