Tuesday, February 26, 2013 Did we have supper?

That was the latest question before going up the stairs tonight to watch t.v. at 9;30..did we have supper???; .eating is our special events of the day, so it's important for him to know.   It's amazing how fast a day can go when one has those three events,  breakfast, or brunch, snack time and supper...between those events, there is our walking...this we managed to do when we came back from study group at the church, normally i leave him with our Helen, but  , Helen is no longer our suupport girl for Mac...she has tendenitis and will no longer be working for the clsc till this clears up, but sad to say, we'll be living in Lachine and on to a new suppport person.

For approximately 2 more days we will have Clare, luckily she worked for a moving company at one time, and has given me great tips on packing for moving - so tomorrow this is what we'll do PACK;  At first Mac was very sad to be without Helen, but I must say that the Alzheimer's group have neat people that work in the role of respite for care givers, and Clare was able to stay with Mac without too much of a problem, although after having Helen for almost two years, it was even an adjustment for me.  So if you are reading this blog Helen, you are missed and we surely appreciated all your help and loving support.

Now, Mac is busily checking his wallet,  a nightly procedure, checking his change and making sure all the doors of the house are locked, the cat is in, and that I am getting my act together to get to bed -   I must say that these daily routines,  marching around the house to music, going for our slow walks on a good day like today , the reading of newspapers, doing crossword puzzles together, doing the dishes, this is important  and seems to keep Mac ticking...and his mind working, not only working, but fun; and  as he just said now o.k. end of the fun and games, time for bed  and he is saying it again  so o.k. already, g'nite

Saturday, February 23, 2013 okay that's enough...

If you have been following this blog, whoever, you know that we - Mac an I, almost had to be away from each other.  We were thinking of a long-term Facility for Mac, and since there was an opening coming up, the Social Worker suggested we start by having him stay at a holding place in Laprarie till he went to the Chateauguay Foyer; where I would visit him every day.   This turned out to be the best thing that could happen as we, or I discovered that I couldn't live that way...I and my two children who were with me, realized we couldn't leave him there, and I for one was a basket case.

Now each day as he is home here with me, is like a gift.  We still do the same old things, read the gazette together, or I read and he listens to stuff like Dear Annie, we play with our Cat - Mischa, we do the dishes together, listen to music, fold sheets - (do washing every day, at least i do), and march around and try and dance to Rock around the clock and other fun cds.  BUT, each day, I sit on his knee an cuddle, and he loves it, and then he'll say okaiy, thats enough...don't want to overdo it, I'm too valuable, or stuff like that...and it's such fun.

Soon we'll be moving to an assisted living place, and Mac will still be with me till he can't, and then he will be in the same building as myself, and this way, not too far apart.   My friend was saying that the doctor for her mom who has Alzheimer's said, that Alzheimer's is a Care giver's disease....well I know what he means...and it is such a heart breaker, but right now, my heart is full and happy and so, good night...

Monday, February 18, 2013 We are moving????

The one thing we have learned with all this concern regarding Mac, is his strengths and not only his strengths, but OUR strengthes, the strength of a family all pulling together.  This is family day in Ont. maybe in the rest of Canada, not sure, but for me this has been family weekend and without a doubt our family - Leslie, Gaye, Valerie, Glenna, Maureen, their spouses or consorts as mac used to call the; and of course grandchildren, and the real little star Great Grandchild Finley have all been there to support us through our bit of trial and sadness.  The trial being to move mac to a holding place until such time as an opening was available at a long term facility.    We ended up being absolutely sick about leaving him there, and as I mentioned in the last blog, we couldn't and leslie - went back for him with maureen, and apparently said, ok. Dad put your coat on we're going home!!!...how wonderful for mac. 

Now we have discovered through looking at various residences with longterm facility connected that he is really not ready for such a place..he is able to carry on conversations, and although he doesn't walk well, he is walking and talking at a stage that is too advanced for most of these places, and this i had not realized, thinking he would meet others at the same stage and be in a safer environment for him and a less hectic time in helping him for me...well...what we did find out is...

That by moving to a residence with a facility for long term care, is that they can provide me with help - we will live in a safe and lovely apartment, NO STAIRS, HELP AT NIGHT AND MORNING and as well Mac and i can stay together until such time as he just cannot ...how terrific, so we have found the place or we're pretty sure we have.  Today, Gaye and I confirmed it, over the weekend, she maureen and I travelled around looking for just this solution.  Finally going back to the first one we looked at... - the one that mac's barber had recommended couple of months ago.  as a matter of fact he will be the Barber there, he has been Mac's barber for over 40 years. 

We were lucky in that they had two apartments available....and today we decided to take one, of course this will take some time, and we have been talking about it all day....with Mac saying...We are moving???  where WHY, etc.  over and over.   he will soon know it for a fact as we're thinking of moving in March....So, be prepared LACHINE, HERE WE COME.....G'night  p.s. must get someone to put a picture on when we're there, or learn to put one on myself...

Friday, February 15, 2013 We just couldn't say goodbye

A fast blog to let anyone who read this know that i am ecstatic, i'm waiting for my son les and my daughter Maureen to bring Mac home.  We tried to see if he could settle and i could settle too, with him being in this respite place...  WELL IMPOSSIBLE....

It is just not for us....we have decided to have someone here at nights to look out for Mac and myself for that matter.  and so there is the answer for now...in the meantime, i'm crying cause i'm happy....cried all night because he would be going, hid my tears and we took him, but inside i realized one we were at the place, forget it...Mac was miserable and angry, and would say things like, look , if you don't want me anymore, let's go home and discuss it and then if we decide it's the best, you go your wayi and i'll go mine..

obviously, he didn't realize and no matter how often i said ..no no, it's because i'm too old to be doing everything, and you fall, and you are not well etc etc..but that would go over his head...anyway..bottom line, i  couldn't stand it either, so now i'm just waiting to have him home and back in my arms again, even tho i was to be there every day, it's something that just can't be done by us...coz we just couldn't say goodbye.

Thursday February 14, 2013 Valentine heartbreak

Woke up this morning to see mac getting out of bed to go to the washroom, and then, and as he started to walk, suddenly fall over backward; luckily his head missed two sharp corners and landed on the carpet...lucky, but not so lucky, as he couldn't get up.  We had to have our neighbour in to lift him back to bed...but the WAKE UP call for us was very clear.  This could have been much worse..he could have broken something, , but instead, its a different sot of break, let's call it heartbreak which it is..........

We are going to have to go to a respite place tomorrow until he can be placed in a long'term facility..it's gotten to be too much..and therefore, the memories will i hope go on  as we cointinue our very sad journey in two different places.  Just yesterday, Mac was looking at his mom's picture and said, when will she be back...and then realized she would not be back, his sadness as he mourned her loss was unbelievable and the tears for both of us were shared....because we were together.....

This loss is harder to bear as it is another form of loss, the togetherness that has always been such a blessing for us..no matter what we were together ...well as much as possible I'm going to try to be with Mac and so
tomorrow will start a new episode in our life, not together completely..but as much as we can be...we have had 6i0 years so I'm trying to be brave...please have us in your prayers and thoughts...g'nite

Monday, February 11, 2013 Who are you?

Going to bed these nights hold a mystery, what will it be tonight, will I be up at various times to make sure Mac remembers where the bathroom is, the toilet etc...or will we be awake having a conversation ..about where the cat is sleeping, where the other cat is, even though we only have one, and perhaps how long ago did his mom die...and as in last night....Who are you?   Of course, my reply, Janet, and I'm trying to sleep it's 2:45 a.m.  "  Well you are not Janet, says Mac, you are an idiot if you think i don't know that?   In fact you are stupid."  

The language gets a little more abusive, so i reply, "look if we are going to discuss things let's do it in the morning, '  Well grumbling and grumbling Mac walks around saying no way, we have to get this straightened out...But i persist in saying over and over, "we'll have to talk in daylight it's too dark now and I can't think  - I'm half asleep, so get in bed. "   Finally he gets in bed and goes to sleep, only to wake me  up about 4:00 a.m. quite happily, saying  - don't bother, it's o.k. just getting back from the bathroom...YIKES, and there he is all fine, so is the bathroom ...

There is a real difference, these days, his mind  so often mixed up as to who  am I  - where we live, - where is his family,  where are my sisters, BUT  at the same time, he is doing things he couldn't do, i.e. going to the toilet easily by himself, putting on his slippers, - taking off some of his clothes, and physically going up and down stairs carefully, but much better than ever...even getting out of chairs and putting items away all by himself...I am astounded and think gee are the meds finally doing this or what...but then we have the conumdrum...physically he is significantly showing improvement, but mentally, he is really not in tune.

Yesterday, I tried to prepare him for the concert we were going to at Bourgie hall, to hear symphony and great italian composers, plus a great soprano..he was all happy, until we started to get ready..  Wow, no way was he going, and no way could he go in someone's car.  Thankfully I started doing all this at 12;15 we were leaving at 1;00...so by the time our lift came he was swearing under his breath, but getting in  the car - hurrah.  All the way there, and even once in the concert hall, his tone was threatening, and he was very very upset...

Finally he allowed me to help him take off his coat when he saw others doing the same...So when the music started, i just turned away to watch the performers on stage to my left...Mac sitting at this point quietly on my right...I allowed myself to get wrapped up in the beautiful soprano voice ...when tapping on my shoulder, i hear mac quietly saying...she sings like an angel...this is wonderful...and that's how the rest of the day proceeded, wonderful...and as if there were no problems at all, Mac said on the way home, when is the next concert???

Who knows what will happen tonight...he has already asked me - while we were having tea with my friend Susanna,  "Hey do you know where jan is,   i said 'yes - here I am...he said   no no, I mean Jan McConnell...

This is the story of Alzheimer's - and this is the reason and the hope of why there has to be more research and they have to find a cure....This scenario is repeated by so many and so many caretakers, are really on tenderhooks, and pining to see and know their loved ones, but more important, so many Alzheimer sufferers are completely alone and wondering all by themselves even in a crowd.  Forget the fallacy that they are in "happy land", that is not the case, maybe sometimes, but certainly this is not mac's experience.

Although music is the best, and so that's what he is doing now, listening to music, and i'm going to join him
bye now..

Friday February 8, 2013 When did my mother die?

Another day of researching the brain, or I should say mac's brain, he was trying to think of the day - was he there?   How come he can't remember?  It's my mother i should remember..This is the saddest thing as one of the support team member's pointed out, that each time they do remember who - usually a mom - died the mourning starts ...and the sadness can continue.  Happily mac did not go into a blue funk about the fact that it was at least 55 years ago, i mentioned that he certainly was there and brought up some of the family that were at the funeral and what he did etc.  which seemed to please him and make him believe that he did remember.  So he looked at her picture and decided that she certainly was a good mother and how happy he is to have had her in his life.

Thinking positive is what makes the day for us, and so we decided that having a cat like mischa is great as he steals our chair every time we move, so that keeps us hopping, also having our gold fish always needing more food, that keeps us busy, and of course making snacks and being happy we are not out in the storm.  We were able to place the thoughts in mac's mind as he chattered on about a small house that we own, of course he is talking about the house on the lake.  He said remember we were there, we slept there and we loved it, is that my house or your house.   It's our house, well now who is looking after it in all this snow.   I said well Terry Woods is clearing the snow off the  roof, but remember Arnold used to do that.  OH OH Arnold of course, and on he went about our wonderful handyman,Arnold,  now no longer alive...

So really it was a day of positive outcomes in his mind, in his manner and in his abilities..getting up from chairs, getting in and out of the bathroom without help, having a shower and not worrying about tripping out of the tub...and wonders of wonders, going to the bathroom last night at least 5 times without me  hurrah..one thing about taking meds for this cold I was just too tired to move and lo and behold i didn't have to.  Well how is that happening, is this going to continue for a while, certainly hope so.

So now to take my neocitran - in bed, read my book, and hopefully have another great night - and there is Mac waiting...so g'nite.

Wednesday, February 7, 2013 I Love YOU....

Typing this quickly, because we have been having such fun, we've been marching and boogying around the living room to jeff healy's band...such a super record...most of the songs are dixie land style, but when he sang stardust...well mac and I kind of waltzed around - it's not easy for mac.  i guess the memories of that song, which used to be the last song played at our dances at the Club Rendevous, Y...so man years ago brought some flicker in Mac's memory and he said..i love you...and so we still do...

BUT,  About 10 years ago,   i must have had some inkling of what might happen down the road , as whenever we had what I considered an absolutely perfect day, usually up at the lake...i would say as we wended our way home...i wish i could die right now...it's been a wonderful super day...Mac would say - are you crazy, we've got lots more perfect days ahead..let's die when we're old and sick..

Well we're not old or excuse me - we are old, but i don't feel old, but he is sick, and what a sickness this is - where we never know from day to day what more will be gone from mac's memory   We're happy that he can walk around, happy he can get in the car today and go with me for groceries, although he only sits and waits...We are happy that he eats well, enjoys music, loves the sun as it pours into the kitchen and dining area...and follows me around like right now, he is calling up the stairs...are you coming back to me..i say, yes will be there in two minutes.  This sickness that changes his mood from day to day, where he can cry and say where are my family...i miss my mother, do i have kids,  who will tell me...

When i try to let him know we may have to be separated but I will visit him every day, he looks at me like WHY, there is nothing the matter with me, I'm fine.  It, well it can tear my heart apart...but, right now NO

I'm happy, we've been dancing, singing, and saying I love you....Valentine's day in advance....good afternoon

Saturday, February 3, 2013 I don't need him.. he's a......!

We certainly agreed,  Mac and I, that he does not need the man from CLSC to give Mac a sponge bath...This is something I can do, and therefore, we will not have him every Friday.  I called to cancel him for yesterday, but will call to tell the CLSC that unless he can give Mac a real shower, he should not bother to come anymore.  This will make Mac very happy, apparently the shower being upstairs is not a good thing, perhaps the fact that Mac has problems going up and down stairs, this may cause law suits, didn't question it, but I really wanted someone stronger than myself to get him in and out of the shower..but in any case a sponge bath in the kitchen was not the answer for Mac, and listening to him getting really angry about the man plus becoming abusive in his language...well that added some fireworks to the decision. 

This is something one has to avoid when working with people with Alzheimer's, FRUSTRATION, when it is hard to remember what happened ten minutes ago, not knowing just where one is..or even who or what is coming next...it is already hard..so having to do something that is so outside the box, i.e. standing in a cold kitchen almost naked to be washed by a stranger, well I can certainly understand the anger...only problem, the anger is usually directed at the caregiver..and hey that's me...So let's all agree here. for sure.

Then for the caregiver, in other words ...me, i find myself getting all uptight and yelling at absolutely nothing
so it's kind of good when Mac says in a neat nice calm voice..."why are you yelling"...then i think who is the sick person here..and we both end up laughing...When i put myself in his place I think he is a real brick and so very calm most of the time, and also quite humble, well it's really a learning experience all the time. 

We were discussing how and where he lived, as he wanted to go home yesterday around lunch  time, and was quite surprised to find out that he really was home; so imagine my surprise about an hour later when he said, "look let's get something straight here....who owns this house.?   ME, right??  Not you...  he is correct. but i wasn't too thrilled with the tone of things there, but kept my cool, and said, right, but we both paid for it, and who keeps it clean and does all the work ...well he was pretty sharp as he answered, "yes, but that's not the point...I own this house.   Thankfully his attention was distracted when the phone rang, and almost at the same time, who should walk in with the amazing lovely baby, but Brianna our grandaughter with Finley.

Well won't go into the love, the fun, and games we had with the most wonderful of great grandaughters, but a certain great grandfather has been having a hard time staying awake all day today, after trailing that little one year old all around the house yesterday.  So today has been a quiet and peaceful one with sleepyhead mac, and in fact he's watching t.v. and snoring...so g'nite.