Friday 28 February 2014

February 28,2014 Friday.... Will this go down now....

Just gave Mac his bedtime eyedrops and tucked him in, then  he said 'Will this go down now"...he either thinks that the bed he is in is on an elevator, or on a train, or anywhere but in a bedroom.   So i explained to him  as i usually have to do, that we are in an apartment, it is stationary does not move...and not to worry, i'm coming to bed and we'll wake up in the morning have breakfast and all will be well....

How really important it is to let him know that he doesn't have to worry, he is alright, but how sad it is to see the many disoriented and upset people who have the big A, struggle to try to figure out their lives...Tonight when we went down to visit and say goodnight to our friend muriel, one lady was trying to bring herself and her wheelchair into the room we were in...saying there was a meeting..Muriel pointed out that the lady was much more settled these days, that in the past she was a terrible person, always looking for a fight and upsetting everyone. 

This is so often the case that at times - especially in the beginning of the big A.  many affected  are trying to make head and tail out of their lives and are so frustrated and angry..wondering what the h. is going on.  sometimes they hallucinate and think others are after them, and /or perhaps they are due to go to a meeting, - where is it, who is going etc...why are people looking at them in a funny way...



Getting older is no joke when one is not well, but how awful it is when it combines with Alzheimer's disease..I'm so thankful that for the most part both Mac and I are healthy...and he can see the problems of others and try to be helpful...i thought it was so sweet of Mac to say to Muriel as we were leaving...'well did you have a good day, you don't feel sick today..' as so often she is unwell, and though not suffering from A she has so many other problems  that having a day free from pain is not ever going to happen to her...so i'ts neat to see Mac remembering and being kind, but would he be that way, if he didn't feel stable and cared for himself, I really don't think so..

Our life is so intertwined with real heros or that's the way I think of them...today we heard two girls who were sharing our Adapta Taxi..they were both mentally handicapped, had big problems with their speech...apparently they were coming home from their job...and as one left the cab..they both said to each other "see you monday, love you"...this said with difficulty and a kind of hiccup laugh...i thought, how super that they are friends and love each other..those are the heros in life, and especially too their families, as i noted the door of their homes were partly open as they were getting out of the cab and the driver said in both cases, 'there's your mom waiting for you'...we all need support and love...and no matter what language we speak, and what our ailment...basically that is what will keep everyone going and healthy, someone to care about and love...basically that's what everyone says, and today we could see it clearly..so that's it for today...g'nite.

Wednesday 26 February 2014

February 26, 2014 Wednesday Are we the only ones here....

Dinner time, we have had a busy day, that is after I returned from having 3 hours of respite...today it was going for lunch with friends ...but I find that if Mac stays in all day, he is bored and does not sleep well.  So freezing wind or not, we're up for going out for a short walk,so off we went to check out the shopping center next door, buy cat food and do some people watching..

Mac always finds it amazing how we, who bundle up, wear scarves, warm lined hats, and mitts etc...see kids walking with no hats, their coats wide open and seem to be oblivious to the wind and cold...so there he is saying look at that kid, he has to be nuts, so he is quite observant...but then at dinner time, we sit down to eat, and that's what he says....'Are we the only ones here??? " Well yes Mac, we are, sometimes we go downstairs and eat in the dining room with others but tonight, we're having dinner here in our apartment.."



It's sundown time, at this time of the day he forgets so much, he really doesn't realize it is an apartment...he doesn't know where the bathroom is, and then when he leaves the bathroom, he has to be shown where the bed room is, but he takes all this in good stride, even has a chuckle at himself...which really endears himself to me so much...and speaking of being an edearing person....



Today as I was looking for some files..i found an old looseleaf and flipping through it i found this - how strange..... I wrote it many years ago when i had a terrible fall, I broke my shoulder, arm and wrist all at one go...               it is called .....the caregiver, ..and that was Mac...it was so strange to read that  now that i'm the caregiver...



                                            The Caregiver



                            He is the good left or right arm

                             The careful helpful soul

                              The shoulder I cry on

                               The news and town crier

                               The baker the charmer

                                The lover the mother

                                The roles that  intertwine ..

                                 The heart  ever mine                         



then i go on and get even more soppy



                                 To feel love, compassion and tenderness

                                   the quiet response to my helplessness

                                 To appreciate this man at my side who allows

                                   my every wish to be his command

Well this surely was an eyeopener ...so how could i not be patient and kind...as mac was obviously so there for me... today when he said..."you know you are so kind."..I could answer "well you were and are kind too."

we're kind to each other...why not....be kind... g'nite..

Friday 21 February 2014

February 21,2014 Do we put our coats on......

The rainiest day ever, but we were heading out to have Mac's haircut..he never knows is it still raining, is it cold, is it outside, is it inside..where are we going..even though i told him several times..and then do we put our coats on...for sure and away we went in Raymond's car.  Raymond is Mac's barber, and has been for over 40 years...he still tries to get into conversation with mac, but there isn't much remembering there, and it makes Raymond sad..but he is the one who is responsible for us living here at Floralies - Lachine...



For the past 15 years or so Mac has been going to Raymond here in lachine - prior to that he connected with Raymond at CN station, where for many years Rayimond had  his barber shop, Mac was his favorite customer and so Raymond has continued to be the man who makes Mac look so terrific...one day when he saw how mac's memory was deteriorating he suggested that we try the Floralies....i forgot about it until we were searching for a place (desperately where we could stay together with help...and only remembered when we (Gaye and Maureen and myself) were just giving up on trying for a place that i could take on the lakeshore, Chateauguay not having anything of that nature..only a placement where he would be alone, and i would have to visit each day...not an option.



So it was kind of memory lane day as we discussed how long Mac had been going to Raymond, Mac and I continued talking about that when we came in the our front door, the radio was still on to entertain our mischa while we were gone, and there we heard Beethoven's 5th... i asked Mac, do you remember that piece and do you remember how we were so thrilled many years ago when we heard the montreal symphony directed by Zubin Meta   and the wonder of seeing a live orchestra doing that....SURPRISE,he said he remembered...and so that was terrific.  So long ago, the Montreal Star promoted the symphony by having Dollar Concerts at the Forum...mac who is listening to jazz right now, has always been a jazz fan, and he became a great classic fan through those Dollar Concerts, even more so than myself.  I love classical music, but can't remember the different symphonies, or who the composers were...this was never a problem for Mac, along with knowing the jazz greats  he also knew the Classical greats...and so hurrah, although he didn't remember Raymond ....hardly remembers who i am...he knew Bethoven and the 5th symphony...but then what a wonderful composer...in fact what a genius...i told mac Beethoven's  father took poor ludwig  out of school at eleven....mac said..he didn't need school he had his music...so true



Well it was a wonderful memory....and now we are enjoying another great...Frank Sinatra...so maybe I'll check and see if he remembers our jazz days or maybe I'll just leave him be and let him enjoy...and i will too...g'nite....

Monday 17 February 2014

Monday, February 17, 2014 I'm really worried....

Mac was really his old self, no change especially at sundown time...both yesterday when i returned home from Florida and today...'I'm really worried...i don't think i could get a job now, do you?? "  I have no money, what will I do...'  and as usual my telling him that he didn't need to work, he was 84, plus he had a pension, CN were really good employers, and his pension goes directly into the bank...'oooh better get to the bank tomorrow..'   well no, i inform him, they keep your money safe etc etc...and we go through the same hoops and whistles, till fnally, he says ...' well i was ready to jump in the river, thinking i was lost - no money, and could never beg on the street, how wonderful - i have money"  



This is so sad, as each night - well practically each night - we go through this over and over, while we eat dinner.  If we eat down at the dining room, he saves all this sadness for later, and also the fact that he would love to see his mother; but I try to head him off at the pass, and speak about something else and distract him ...tonight i had to say o.k. let's not go through that over and over, i'm liable to become i mpatient...'well yes - i'm so lucky I have you to help me...and he gives me a lovely hug...and it's amazing how he realizes that he is lucky to have someone with him to explain it all..he even says...'i'm not alone, I have you'...and it reinforces my understanding of why he is as calm as he is most of the time...it's so important for me to keep my cool and repeat and repeat the same thing...as he sure needs reinforcing constantly, but it can become wearing, but I do tell him..'o.k. time to change the record..'  etc.  he laughs and that's kind of good, and of course taking him down for the mail - talking and walking...does do the trick most of the time.



What is also wonderful is I've had a great respite week, the vacation was super and if i knew how i'd post some pictures, but the picture i'd really love to post is that of my daughter Gaye with Mac....she went ahead and handled every emergency, had to change a whole bed and him at night...had to  discuss what she was doing sleeping in the front room at night - and other happenings, also in the middle of the night...45 min one night, and sitting down with him to explain other things - also at night...I guess about three nights or so, she would just go ahead and just do it...What a gem; I'm so lucky,  this has been such a break, and I'm sure some one who loves him so much, of course,  has to do the right thing ....



Now, must say, we went out for a walk in the sun and wind after I returned home at about 3;30 p.m. and I hate to say this, he FELL, on the corner right on to the road as the snow was lumpy and when he heard the sound of the kind of music that goes with the light turning red of all things (that's when we CAN cross the street) he kind of jumped ahead of me and even though he had my hand he went down.  Believe it or not he turned over on the road and got up on his knees and with my help right on to his feet...and forgot all about it when he got home...but I sure did not, and I was a basket case, with butterflies going around in my tummy for some time..but he is no worse for that, and today we did a walk and all was well..so onward and upward, (especially upward) g'nite

Saturday 8 February 2014

February 8, 2014 WHO ARE YOU???!!!...

Yesterday we were on our usual walk around the building after going out on a stormy windy day we were sort of just meandering. Sometimes Mac sits after we walk and watches as i ride the stationary bike in the activities room but as i was deciding was i up to doing that, a wife of one of the residents came to us and said hi. We stopped to chat, and I kind of thought was she remembering the night before at dinner in the dining room. Sure enough she was, every day she comes to see her husband who has the big A, and usually stays for dinner...her husband is a tall kind of boisterous man full of jokes - often off-colour ones...in any case at dinner one of the ladies was wailing in a kind of baby voice...when all of a sudden her husband in a loud voice yelled at the poor lady..SHUT THE FUCK UP!!! Well that kind of put a damper on things...and later I could hear the nurses - servers and preposees saying...the poor lady, she is sick...he is awful..

When our preposee brought it up when she came for Mac, I reminded her - he also is sick, he has the big A..she just looked at me completely uncomprehending....Apparently this wife told me the same thing, she said, I'm so upset..everyone here feels so sad for the ladies who are physically handicapped and in pain, but don't they feel for my husband. He would neve say things like that before he had A. he would be so helpful and sympathetic...she said I feel rather lost trying to tell them.. Her husband is 77, she is much younger..anyway, she said you are so lucky with your husband, he seems to be so quiet..

Well Mac has been exactly that, sweet, quiet, cooperative and as my daughter Maureen said after she spoke to him on the phone. 'Dad is so good this evening, he is on-target, happy and answering so well" I agreed, he is so much better these days ..i also went on to tell her how well he has been for the past few days...this seems to be my downfall, for last night..just as I was getting into bed, about 11:00..Mac got up, saying "the game is over, right?" I thought he was joking, and meaning - time for bed..I said, right, do you want to go to the bathroom...

No way, says mac, I have to leave now and go home the game is over...I'm going home..SOO that was the start, on and on he went with me saying, well the game isn't over, you have to wait till tomorrow..it will be daylight you can go then..this continued for some time and the yelling by him was just as loud and just as obscene as he told me to get the hell out of his way, he was going out..didn't care if it was dark. and didn't give a s..... Finally realizing that in this state he is stronger and louder than me, decided o.k. time to try the emergency #.. How terrific, it worked...a few minutes later, the male nurse came in..

He was so calm, as he told mac, No mr. mcconnell, the time now is way past eleven, almost twelve, you have to wait till tomorrow. 'Mac said, no the game is over..and the nurse said "no it's not', mac said, when will it be over..the nurse said, tomorrow morning at ten...you have to go to bed now...and calmly took him to bed...My heart was racing and I decided to sleep on the sofa..and finally just when I was settleing down..Silly Mischa our cat decided to let out a nice big wail...I got up and said - keep quiet, and put him in his basket..then noticed Mac sitting up in bed.

I came to him and he said in a loud frightened voice "WHO ARE YOU??..i said don't worry, I'm Janet..he said "the man won't let me go out"...i replied it's o.k. tomorrow you can go out..just go to sleep now, it's night time... phewww he did..and so finally i did too..

Well, thank god the emergency #, worked and I got help - Thank God..but surely it's time that people realized Alzheimer's is a disease and time to sympathize not just with the caretaker but with the person who has the disease...We are the lucky ones - we are well..they are sick.

This will be the discussion at the next Alzheimer's Cafe..the stress of feeling ostrasized and the shame etc..well I never thought that still existed...but on speaking to the lady yesterday, and seeing what happened last night..now I know this will be a useful discussion, but I'm sure the lesson will be taught to the converted...

Who knows??hopefully people will feel for the person suffering from this disease...and now it's time for our walk, the sun is shining...this will be my last email for a week, I'm going to Fla...lucky me will have a weeks respite thanks to my super daughter Gaye..but I'l be happy to come back to my Mac g'bye for now

Saturday 1 February 2014

Saturday, February 1, 2013 Are we going up now......

On our way to brush our teeth, that's the question mac asked, Are we going up now.??, where i wondered was he thinking of going up to....It always hits me, usually at bedtime just how it must be for him not  to  know where he  is, or perhaps some memory of how we used to go upstairs to bed may have triggered that idea - i.e. to be going up...but also certain items always must be in place in his mind, but sometimes he has a hard time to describe what he means, and so after brushing his teeth and washing ...he tries to get across just what he is missing and must find...so two items come to mind...his hanky, no that's not it...his wallet...right!!!  Don't need to say 'your watch' he  has it on and wants to wear that to bed, - no problem. 



But he has had a really busy day, which of course he forgot as soon as we returned home...but he did remember the reason we were out all day.  Roger Snelling, who worked with him many years ago at CN, died ....we went to Roger's Memorial Service today...so many were there..at St. james united church...and although mac would ask often, where are we going...when i would say to Roger Snelling's memorial service, he always would say..."Oh Roger died, he was much younger than us"..and so he was he was 74 years old and a wonderful friend, Activist  a tireless worker for justice as well as supporter of immigrants - poor people and homeless...he helped to have a micro loan org. for those who wanted to start a business in montreal and needed seed money...- and managed to get so many of us involved in his work...so Mac did not forget his old friend, and for sure I,  who worked with him on subcommittees for kairos..will never forget him either...



Then to return home to find out that one of the members of our support group...linda, informed me by email that the husband of Anne in our group...died on jan 31...he had alzheimers and had also suffered a stroke...the family had been trying to find a place where he could be placed and be safe...Placed and be safe, are the key words...as I meet and talk to many of the people here, in fact just tonight, a resident, Doreen, was crying, she didn't want to go to bed - it was 7;30 p.m. she was also yelling at the preposee "don't put me to bed" in Englilsh, the preposee, a beautiful young one, was answering in french...I have to leave at 8;30, so I have to put her to bed.  i suggested she wait at least 10 more minutes...but how sad it was as Doreen said, thank you dear...she said, I wish my two kids would visit me and tell the preposee what i need - they speak French....but they never visit...maybe they will feel bad when i die...



Well to tell the truth...Mac and i felt bad for her already...but it's not easy,  i realize,  to work with  old people, they are so up and down...and that is natural as their health is also up and down...So for as long as possible, I will try to stay healthy, and make sure Mac is o.k. and has someone with him that knows what he is trying to say, and can help him know where he is going, and where he is...be it up, or down, a hanky or a wallet....and make sure he is safe in his own bed...so now to join him, g'nite.