February 27, 2015 Where are the kids???

Where are the kids??Can you gather them? I found you but I can't find the kids. Can you get them and place them in one place ok if you want. If you can't find them what the hell will e do. How many do e have, five you say, Les, Gaye Valerie Glenna and Maureen are they in order. Can we round them up, find the .
I kept trying to explain, but no way...I was jotting all this in shorthand, I've never seen him so upset about the kids.
He then continued, saying, you ran away but I found you. Then I realized what was causing his concern. This was the first time I had tried to save time by putting on my coat hat and boots before taking him down to the 2nd floor. When I got him in a chair with "the gang" - as he calls the people who sit around in the solarium, I said, ok I'm just going to the grocery store, I'll be back stay there. Then I kind of scooted out. Usually I bring him down, do not wear my outdoor clothes and say I'm going to go grocery shopping, and then scoot, but I guess he thinks I'm in the building somewhere, and when he saw I was leaving him - coat hat and everything on, it may have somehow made him think I was running away.
So on and on he went, so sad to hear him saying "Think, should you run down the road and get them I said, "mac, they are big now, they are in their own homes. - but no. he says, Can't we just quickly get them...how many can come. We know them, can't we go home and get them. You say we have five right.so he starts counting one two three four five. and saying their names on each finger, Les, Gaye, Val, Glenna Maureen" You say they are not little kids now.. There is a big hill, they are probably there can you catch them look around. So I was getting upset myself, and decided to go along and said. Look they will come - don't be sad.
On Sunday Briana will come with baby Lachlan ..but no - HOw many do we have did you say - don't just sit there, find them..I should go in the car and get them...What day is it today...I said Friday..Mac said,oh I thought it was Sunday...oh they are probably in school...I thought it was Sunday.Mac continued saying, so I had to get them.
Then I decided to go along with that. and said, o.k, Mac it's Friday, not to worry they are in school, so relax...we'll see them all later...and guess what, he did, he sat back in the rocking chair where we were sitting and calmly said, oh that's good.
I've often felt so terrible for the lady who goes around calling Gerald and another time Murielle, Carole . Thinking how awful her kids never ever visit. But, maybe she thinks her kids are missing, perhaps I'll try telling her they are in school, it might work.
Yet as I write this, I have such a sad feeling, how lost he is and how much he loves his kids, if one could see the panic on his face and how he was so wrought up thinking - "where are my kids"..well, hope it doesn't happen again, but I'll stick to - they are in school, saying they are grown up, and have their own homes doesn't always help the situation.
So the day finished on a happy note all was well in his world...but the usual story of where he lives,, i.e. St. Henri, and how he will visit his mom and help her still goes on and on, till he comes in this apartment, pets the cat and settles down, I put on some jazz cds, he holds my hand as I dance around to "If you ask me I could write a book" and that's just about what I'm doing.
So then I

Friday, Februrary 20, 2015...Get away....get out of here

Well that's a change from last blog. Went down to see if Mac was up yet...he was not. Opened the venetian blinds, let in some light and asked if he wanted to get up. "Well yes", he said...So off I went to get the preposee to help get him dressed.

By the time I could get her, they are really busy in the morning, she really was pressed for time, but came anyway. There he was walking along the hall quite happily - bare feet, hospital gown, and all. So we walked him back to his room, but he said, hey, it's o.k. I'm up. Well with the preposee kind of rushing him, and my saying well you have to get dressed first..it got into a real argument, with the preposee trying to just ignore his refusals, and my trying to explain he had to get dressed first, then it became a free for all, where he just pushed and struck out at us, then really hard at me, saying, Get away, get out of here..BITCH.. AND the next thing I know I was flat on the floor, and twisted my knee.

Well lesson learned, I will leave it to the preposees when he doesn't want to get up, and if they want to leave him in bed so be it.

This all ended ok...that is, once he was dressed, I was exhausted, and teary, but we were holding hands and happy to be going upstairs to the apartment for some breakfast and coffee. The rest of the day, was also fine, and getting him to bed, was a cinch...So that's it.

Actually I had a similar experience during the week when he was soaking wet and didn't want to be changed. This happened when he was already up and dressed, I wouldn't want to say the preposee on duty was clueless, but she said "I couldn't change him, no clean clothes". Well as I pointed out, no not in the top drawer, those wet clothes were from the top drawer, the second drawer had two more pants and tops...Oh ...so then she decided o.k. I'll change him, no preliminary talking, no English - not even his name. All the aforementioned words by her were in French. I pointed out she should at least say, his name and perhaps, ok. Mr Mac..it's o.k. No, she said, I don't speak English at all..All this was being said in French, of course, with Mac, pushing her and saying blah blah blah. I took his hand and tried to say, we're going to change you, the next thing I know he pushed me with both hands and boom I landed on the floor. But, she was able to change him...should point out that she is a large person, so he was more intimidated than he was with the smaller lady who was with him this morning.

Actually today, both she and I were battle weary by the time he was dressed this a.m. and we both decided it's not a problem to leave him till he is ready..what the heck, he's not going anywhere special...

Live and learn, and now I'm off for a warm bath with Epsom salts to heal my wounded knee...g'nite.

Tuesday, February 17, 2015.. You are a wonderful girl...

I'm putting that heading in for the record - wow, take it while I can, the advice of my friend Celia. Actually, Mac has kind of reverted back to his days of wondering how he can pay for everything. The only problem is now he really cannot read, so trying to show his bank statement is useless. I had to tell him about fifteen times how it is that we can pay for everything. Where the bank is, where he worked, how he had a pension etc etc. Added to that I also had to repeat what day it is over and over. Finally I kind of lost it, and said, "you will just have to trust me, I'm telling you the truth. You were able to have a pension, you had a good job at CN and now everything is taken care of - plus Les your son is your financial advisor; he has helped us to manage our $$$ so there you have it.

Believe me I didn't say all that in a nice tone of voice, so it was so sad to hear him say.."Gee I really don't have all my beans"... I think he was trying to say "I don't have all my marbles". :I'm really a nutty guy"...I melted completely, and felt so awful for losing my patience...told him how lucky we were that he was so good at his work and that he did well in his day etc etc. Then he said, "I am so sorry, you are a wonderful girl"...well he is a wonderful guy, and a sweet husband, and I must remember that.

Actually I wanted to make sure I put in the blog that he had a blood test, and will have some more tests, and must find out why...I guess it's just for his medical record. He is eating well, and walking fairly well - still has his moments of anger, thankfully, not as often as in the past...and as one can see I'm still having my moments of impatience..so better change that attitude. Tonight the residents on the 2nd floor were really "off the wall " so to speak, and I'm wondering if it's a full moon, thankfully, it did not effect Mac to hear the screaming, crying, and the yelling for mama mama...I wonder how the lady who used to be o.k. on this floor was finding it tonight with that noise, amazingly many of the residents just ignore the behavior of the others, which is unreal, as it certainly effects me when I'm there.

Anyway, I will remember my compliments, and coming after Valentine's day, it's going to be my valentine for this year...g'nite.

Saturday, Valentine's Day, February 4, 2015..No, no, no....

Ten-thirty a.m. Mac is still lying in his bed, he is dressed, but when the preposee tried to get him to go to breakfast, it was no no no. There it is the up and downs of this disease..she said he was so aggressive and tried to punch her..yet yesterday he was so fun - and so it goes..one day up the other day not so UP.
On the way down to see him I passed one of my neighbor's apartment, the door was open as her three children were moving her stuff out. At first I thought oh no another one gone, but apparently she is no longer able to look after herself, and is moving down to the second floor. Her son said it was a hard decision.
Yes, don't I know how hard. My friend and support person in the Alheimer's Support Group is also going through this, her mom is in the midst of moving to a room in the residence behind ours, this one is really almost hospital-like. The residents live in one room and the floor is managed like a hospital floor..with one room serving as a kind of lounge. She was never able to get up in the morning, most days she would stay in bed till three o'clock in the afternoon, then want to stay up watching t.v. till very late. I find that if Mac can be in bed asleep early in the evening, mornings are much easier, don't know hat happened last night as when I left him he was sleeping, it was eight thirty p.m. Perhaps there was a ruckus and noise later that kept him awake..in any case I'll go down in a bit to see if he wants to have a little breakfast.
The past week he has been, for the most part, fun, easy and even joking, when I said to him as he was walking away from his chair..where do you think you're going, he said, "I'm jumping over the fence" and laughed.

Many times he seems to realize he is kind of a prisoner, and this is the case with many of the residents with the big A. They wish so much to see their own home, their mother (funny, never their father)and often try to go out of the building. Those that can walk around on their own to a certain degree, wear a type of bracelet, which causes the doors to lockdown if they do try to get out. For some of my visitors this is off-putting and they kind of cringe - but I think having some sense of freedom is a blessing.
I could leave Mac on the second floor all day, but walking, talking and seeing different locations even if it is in the building gives his spirit a lift, just as listening to music, and of course eating sweets.
When he lost his appetite after his operation, making the food sweet by adding a bit of maple syrup, ketchup or a sauce helped kick-start his appetite. Now food is no problem, but again this is also not a given, this is on and off as well.
Not to forget, the memory of how to do so many things is being lost, i.e. chewing, swallowing, tasting, in the way of food. Remembering how to sit down, how to stand, how to walk, what is the toilet for, when do I need to go, how do I pull down my pants etc etc. This is my dilemma, I must keep those things in mind as when he is ON, I take it for granted that he can do all these things, but as the months go by each activity becomes a thing of the past..so this blog is a help, it goes back to a time when he could and did much more...and seeing the other residents on his floor makes me know that in time he will not even be as able as he is now..
Simone the 90 year old little singer on his floor, was singing the most appropriate song at suppertime last night...un jour a la temp mon Jesu, I'm probably spelling this wrong, but it means One day at a time , one day at a time, that's all I ask sweet Jesus, one day at a time.
So now to get on with this day...one day at a time...

Monday, February 9, 2015, No, I don't remember...

Do you remember St. Henri? "No I don't remember? That question is usually answered in the affirmative by Mac, so I was surprised by his answer, I had taken out some pictures to while away the time while we were having tea yesterday, and I usually like to start on a positive note by showing and talking about his days growing up in St. Henri. But, it didn't dampen the day, as he loves to talk about his early days even if he doesn't quite understand or contribute eventually some things do click. When Debbie was with him on Friday, she was delighted to tell me how lucid and on-target he was, apparently he as able to remember my sister Ellen, my brother-in-law Chuck, and people in the past. She was so happy to inform me as well,that he was positive, in a good mood and a pleasure to be with that day. I must remember to tell her that this information should be given to me in such a way that includes Mac in the conversation, rather than to talk about him as if he is not there when he is right with us. This is a common occurrence I find with most of us when dealing with patients, children, and some elderly people. It's as if they are on another plane and can't hear.
This also happened last night when the Nurse informed me that I should try to be with Mac this morning at around seven a.m. as Mac had to have a blood test. With Mac right there he explained as if Mac was not there that the nurse had tried to get a blood test done earlier in the week but Mac put up too much of a fight and it was impossible. He suggested I be with him for this which would probably help. I turned to Mac and said - well tomorrow you will have a blood test. I'll be there I hope you will cooperate. Mac just laughed and said "maybe".. Well, that is a possibility but doesn't necessarily follow that my presence will help. In any case I spent last night tossing and turning to be awake - dressed and cheery for seven thirty this morning all to no avail. When I got down there Mac was still in bed, and the nurse on duty, Marie Annie, said "oh no he will not have the test today, I need to get a smaller needle, last time he was too agitated if I use the same type of needle he could break it, I must speak to Carolyn about this." Carolyn being the Head Nurse. So I said, well I'll go back to my apartment, I was told by the Assistant Head Nurse I should be here, so please let me know when you get the smaller needle". She apologized and so here I am blogging out my frustration.
There are many little frustrations to be dealt with and it's such a good thing that I have been away and am, hopefully, more able to deal with them in a good mood - ha. Seeing Mac had two med patches on his back when it clearly states on the information with the meds that this is dangerous and it must be absolutely clear that only one patch should be used at a time, was another problem last night, I duly told that nurse and he wrote it in the book...and apologized for whichever preposee was negligent in that case..and so it goes..the good thing is I am here and I really wonder about all the Alzheimer patients in all the facilities including this one who never have anyone on their case- it can be really depressing.
Changing the sad tale of woe to one on a happier note..Yesterday Valerie, Briana, Finley and our new great grandchild Lachlan came to visit. I put little Lachlan, now four weeks old, on Mac's knee, Mac was just delighted, he laughed and really it was adorable, the two of them, Lachlan and Mac stared at each other and it looked like Lachlan actually smiled back at Mac. What a pleasure and what a great memory, not perhaps for Mac, but for me, and that's the memory I'll keep as I start the day...bye for now.

Monday, February 2, 2015...Hey stop just stop that....

Well I'm back and all is well, thanks to my two buddies (Debbie and Cecilia)  who did such a great job of looking after Mac..not to mention all the family, Gaye, Valerie, Glenna, Maureen, and Les, each who took time from their weekend to be with Mac.




At first I was very reluctant to let go of him, or even memories of him as I watched others cycling, hiking, walking the beach, jumping or swimming in the surf.  Finally my friend pointed out that really I was "raining on her parade" by talking about how Mac used to do this or  that and how Mac was such a great biker etc etc, and I guess I was rather teary doing so.  When she said this at first it took me aback, but then I realized - she was right, not only was I raining on her parade but on my own.  This was supposed to be respite and I was supposed to be relaxing and at least trying to enjoy myself.  So I managed to give myself "time out" and what a wonderful time out, walking the beach, jumping in the surf (very shallow surf)  and enjoying the warmth not only of the weather, but the warmth of my friend Carolyn, for a few days and then the rest of the time with my dear niece Gail.  Both of whom are caring not only for myself but who love and care for Mac as well.  I also had a great full day with my friend Louise who drove to visit from St. Petes.  How we laughed and talked - shopped ate and drank to our heart's content.  Certainly t'was a great vacation.




Now I'm chugging on all cylinders and finding Mac's sometimes funny, sometimes crabby ways almost endearing.  When he said "hey stop that", and of course taking the Lord's name in vain, and making the air turn blue as the preposee helped get him ready for bed, I just hugged him and said, "you know what, I love you, you sure can make me laugh"..he replied " get outta here, I love you too"..and as he pulled the blankets and sheets up to his face we both had a big smile - he closed his eyes, and that was that,  another day in the booby-hatch as he called it during supper.  No wonder, as  one lady kept saying over and over while we ate, "I'm dying, I'm sick no I won't eat, go away.." all this in French, I'm getting to be better and better at understanding French...and at times when one lady wheels around on her wheel chair screaming au succor  au succor, I find myself saying it also, and in French.  




I received an email with a cutting from the Globe and Mail, about the author and husband of Iris Murdoch who wrote about his wife's dementia, and how she behaved, dressed and talked - this wife was the  wonderful Booker Prize author Iris who ended her life in such a sad state and in this disease.  Apparently some felt that he was doing this without his wife's kind of agreement as she could not approve or disapprove what he was doing.  I answered ...that in effect that is what I am doing and at times I feel that Mac might not like it, but somehow I think it's time to get this disease out in the open, so many hide the fact that this illness is in their family.  They are in denial - try to make out that it isn't really Alzheimers or dementia, but something temporary, just a kind of phase, but it's time to bring this illness out of the closet and push for more and more research...the Alzheimer's society is doing just that.  I'm proud of what they have accomplished so far, and hopefully the break throughs that seem to be happening will make the disease rare instead of something that will happen to one in five people world wide, by 2020 or earlier.




So to quote Mac "where the hell are we going..."  hopefully we are going to do something to push for a cure soon - that's where we're going ..in the meantime I'm going to bed, g'nite.