Gone :-(

Many months have gone by since I typed in here.  My mom took a drastic turn for the worse and it seemed every day was worse.  It all started when they removed her daily sitter that watched for her trying to get out of bed.  It was like 10 minutes into that shift that the nurse found her on the floor.  She was never the same since.  Started having seizures, etc...  I am considering going after the hospital.  Not because it will help my sweet little mom, not because I want money...  but because this kind of thing should never happen to anyone and changes need to be made.  I'm still thinking about going after them.  My mom died quietly in her sleep on June 12th/2015.  I went home the night before for the first time in a long time.  She was stable when I left.  I kissed her good night and told her I'd be there in the morning again and that I loved her.  I gave her a hug.  I don't know if she heard me or not or felt the hug.  I got a call at 6:40 am  It was like she waited for me to go home before she went.

Prepare to lose some friends.

 Seriously.  And I mean real friends, not aquaintances.  Friends are those that you know have your back, that you can trust and rely on.  The rest are aquaintances.  I don't use the word "friend" lightly.  If you can count the number of friends on your fingers, you are rich whether you realize it or not.  But..  when you take on a demanding and time consuming responsibility of taking care of a loved one that can no longer take care of themselves, you are going to lose those friends.

And you can't blame them either.  You're no longer available, for whatever.  Your social life is gone for the most part and once things really get worse with time it will be gone completely.  You rarely have time to yak on the phone even any more.  Slowly they will dwindle.  No one wants to be the one always calling and asking "how are you doing" and then having to listen to all the shit that is going on in your life.  I hate to say it but even the good stuff begins to get boring to listen to because before you realize it, your world revolves around your loved one you are caring for and that's all you know these days.  So that's all you talk about.   Love your friends but please don't blame them if they drift away and keep in mind they still love you but they can't cope with your life choices.  Others in the same position as you will understand but for the most part, it's as hard on your friends as it is on you but with you it's a choice you made.

I can probably count my friends on one hand these days.  Ones that I talk to, ones that listen to my dribble, ones that step up to the plate when I'm losing my mind because too many things are happening at the same damn time and it's spinning out of control.

Right now I can say thanks to Ravinder, Elsie & Kim.  All three of these ladies have stepped up above and beyond for me recently.  Ravinder who is my right hand with my business and takes care of my dogs while I'm at the hospital for hours on end.  Elsie for running around and doing errands for me whenever she can and for taking my sick dog to her vet appt..  And Kim who stepped up and took my sick dog for me and kept her for days until she had to go back to work.  And even now she peeks in on her at the Vet and walks her.  I am so grateful to have Kim back in my life as my friend.  I kind of lost contact with her for a while.  I'm also a lot older than her but even so, she's comfortable with me.  Having these 3 ladies in my life makes me a rich woman.  And a very thankful one.

long time again

When I took this blog up I had all the right intentions, I really wanted to get it done.  But...  with taking care of my mom and it becoming more intensive, work and my own shitty health (I did 6 weeks over the holidays in hospital myself) and then my mom's health issues as they grow more often and more difficult, I simply don't get to this.  Especially if I want just a few moments to myself now and then.  Sometimes I just like to read the news or catch up on facebook where a lot of my family is so I can see what they are up to these days or the few friends that are there.  If I didn't do that I would be so out of the loop it would be ridiculous.  Anyway.. I finished one post and will try to work on another.  LOL good thing no one reads this because they'd never come back for more since I never have time to type.  I met a man who wrote a book about taking care of his wife who had Alzheimers and it goes from the start until when she finally passed away from it.  I have a copy of his book.  He must have written it afterwards, there's just no way he did it while taking care of her.  People don't understand how time consuming this kind of caregiving is.

A multitude of names...

Let's see now...  I'm Vivian, Chuck, Mother, Mommy, Mom, Sheri, Viv, Kathleen, Dorian, and many others.  I'm having a good day if she can remember my name at times.  Be prepared for this.  You may not think much of this but when it happens to you it's shocking.  Not only is it shocking but it downright hurts.  You are the one that cares for them 24/7 but they can't remember your name.  :-(   You'll get over it or past it and it will take time but I guarantee you, every time your loved one remembers your name it's a moment you'll remember. :-)  These times go in spurts with my mom but they happen.  I've also experienced once when she didn't know me at all, not my name nor did she recognize me, and it was crushing.  Later that afternoon though I heard my name called :-)

I'm not sure what to do any more...

I wrote this about 3 or 4 weeks back but put it aside in a draft until I had some time to finish it.

I'm sitting in the waiting room at St. Michael's hospital again.  I'm just not sure what to do any more.  My family Dr says that mom is having Lacunar strokes.  I didn't understand because I've seen her have strokes before and I don't see symptoms of them now.  He told me that these types of strokes don't necessarily exhibit the regular stuff like a dipped lip or eye, a weak limb, slurred speech, etc.  Kind of like "silent strokes".  He said the only way to detect them is via a ct scan and I told him that she had a ct scan about 6 weeks back so since he works for St. Mike's he was able to bring it up.  He said there was a comment on it that she had a lacunar stroke.  He said she may be having more and that's why we are seeing the things we are seeing.  She is very agitated at times.  Downright combative.  She's never been like that in her life, it's the complete opposite of what my mom is.  She is a sweet little thing, always has been so this is very weird and difficult to understand.  She has these times when she's completely normal then all of a sudden, like a light going off.. she just shuts down.  Stops talking completely.  It's like she's looking right through you.  It's bizarre.  Times she will not be able to find the words she wants.  She uses the wrong words or something that isn't even a word. 

Today she was agitated.  This morning she would not let the psw at the nursing home get her into her wheelchair.  She was very suspect of Michael even though she knows him well.  He's always there every weekend she goes on the Friday we take her in.  She adores Mike so her remarks to him this morning were really out of character.  He explained to her that he was putting her in the chair so she could go home and her disposition changed completely and she allowed him to move her and put her coat on, etc. 

At home she seemed to settle down some and drank a bit of her liquid diet.  When her afternoon psw came at 12:30 I had to go out for a bit and before I did I told her Christina would change her and give her her medications.  She said ok when I told her where I was going and that I would be back soon.  Next thing you know though, about 10 minutes after I left Christina called me to tell me mom wouldn't let her change her at all.  I had her put mom on the phone and I told her Christina had to do her job and change her and she should let her do it.  She said ok and I found out later after a bit more debate she finally let Christina do it.

I got home at 2:30, my caregiver relief left at 3.  Mom was ok until about 5:00 or so.  That's when I heard her bed squeak and I went in and checked her and there she was with both legs somewhat over the railing on her bed!  I asked her what she was doing but she just looked at me looking confused and said something that didn't make sense.  I moved her legs back on the bed and told her she had to get herself back up the bed which she did.  I told her I was going to have a nap and she should have one too.  She said ok again and I left her room.  Next thing you know, I hear her bed squeak yet again.  I go back in and again she's trying to get out of the bed.  I tell her to get up the other end again and I wanted her to have a nap.  That I was going to nap and wanted her to as well.  She agreed.  I should have known that was too easy.  I laid down for a few minutes but thought better of trying to have a nap so instead I went into the kitchen to do a few dishes.  After a few minutes I went in to peek on her again and omg...  I almost shit.  There she was, at the top of the bed.   I don't know how to explain this...

She has a hospital type bed.  So there obviously are railings that we must keep up all the time.  Her bed is at a height for everyone that works with her.  Easier on everyone's back.  So the top portion of the bed has no rail because that part is for her head and shoulders...  then there is the railing but with this particular bed the railing isn't all that long so I purchased ones that slip under the mattress and those are suppose to stay in place due to the weight of the mattress.  Not so but they work somewhat.  Anyway, the head of the bed is up some because she needs it up all the time due to her back.  And there she is..  I swear I wish I had a picture because I'll live with the sight of her the rest of my life.  She's got herself slid out of the bed between the raised top and the beginning of the railing.  She is literally holding herself almost straight as a board.  Her feet are but a few inches off the floor!  Almost like a gymnast.  It was unbelievable.  I had to lift her and move her backwards back onto the bed.  I told her to please stay there!  Have a nap!  I stayed for a bit and she seemed calmer again so I went to finish my dishes.  A few minutes later, I swear..  not 5 minutes went by I finished the dishes and I went back into her room and there she was... on the floor !  Sitting on her bum about half way down the bed on the floor. 

At this point she's very agitated again and I'm telling her I have to call an ambulance because she fell and she starts yelling at me she doesn't care and starts to scootch herself down the bedroom floor on her bum.  I quite honestly don't know where she gets this strength.  I don't get it.  I had her weighed just yesterday and she's down to 39.4 k's... about 87 lbs and she has the strength of a full grown healthy man.  I didn't want her to hurt herself.

So I shut her bedroom door and she started to scream at me :-(  I called 911.  I didn't know what the hell else to do at this point.  By the time the ambulance got here she was full blown delirious and wasn't making much sense.  The police came with them.  This isn't the first time.  Turns out that if someone is unstable they will send the police too because they (paramedics) don't have the power to force someone to go to the hospital however the police do so at times they call the police to attend if they think someone needs to go but won't.  And this is the case for my mom these days.

To make a long story shorter... turns out a lot of this behaviour was due to another bladder infection but somehow in all this they lost her OHIP and her hospital card.  I called the hospital patient advocacy the next morning (I got her home @ 2:30 am after a very strong dose of antibiotics via i.v.) and told them what happened.  They finally called me back the next day.  Turned out the paramedic had it!!  over 2 weeks later the supervisor showed up at my door at 10:30 pm with the cards.  Thankfully.  That OHIP was a nightmare to replace since she can't go get her picture taken.

Update:  It turned out one of the paramedics put her OHIP in his pocket and it went home with him.  Several weeks later his boss got it and brought it back to me with an apology.  I was happy to see it, I really didn't want the extra work of getting her a new card and all that goes with it.

It's not 9 - 5...

Dementia/Alzheimers is not 9-5 however agencies that are out there to help you for a fee or even those that offer volunteer services do work only 9-5 for the most part.  Psw's work later but there is no such thing as caregiver relief after 5 or on weekends and most services stop at 5 pm.

When considering bringing someone into your home to take care of, do your homework first!  Line up friends and family that can help you during the hours after 5 pm.  You are going to need it.  Don't ignore it or think it will all fall into place down the line because it doesn't. 

Pre-caregiver lessons are really needed!!!

Tonight I responded to an email from an agency worker I've got to know over time.  She knows how difficult things are getting these days and is trying to find me more help or even just knowing she is there and is trying to help and providing support by listening is significant.  So.. tonight I wrote her this:

 omg my early evening/nights with her are getting so difficult.  I believe on top of everything else she has "sundowning".  The timing is about right.  Her confusion gets worse.  She gets agitated, words slurred or making no sense at all or just a jumble of wrong words.  Sometimes no matter what I do I can't calm her or for the life of me understand what she is trying so hard to tell me. 

It's getting so hard that 3 weeks ago this Sunday I called my family Dr and gave in to give her an anti-psychotic.  He thought it was a good idea and had brought it up a couple of times.  She gets so agitated and has hit me several times and bit me a couple of times.  She kicked her night sitter in the tummy too :-(  The poor lady has a hernia so it hurt her but thankfully she understands.

So I wait for the medication.  I ended up in the Dr's office yesterday and he actually thought I could be having a mild heart attack and after an ecg and blood work for enzymes we talked about my mom and now he announces that he talked to the elders clinic (which I have absolutely no faith in at all - matter of fact I barred anyone from their services to tend to my mom in hospital or even consult on her case) and they him they don't think it's a good idea and they prescribe melatonin, wonderful.... an over the counter pill that isn't covered either and will do NOTHING to help the situation I'm dealing with early evening/nights.   I'm bleeding money these days.  I have depleted every cent of my savings as it is.  Anything else comes out of my odsp cheque. 

You know..   they tell you to take your elderly parents home, age at home...  what a load of crap.  What they don't tell you is there is no help there for when you really need it.  All services pretty much go 9 - 5.  Well someone better tell the dementia/Alzheimer patients that they are only allowed to act out during those hours so us caregivers can have some sleep and get our stupid floors washed and cupboards cleaned and dishes washed.  My place looks like a hurricane hit it because I have no time.  To do dishes I do 2 or 3.  Turn the water off, listen for her, go into her room and check on her (she forgets she can't walk and falls out of bed), then I can go do 3 more dishes and so on and so forth. 

No one tells you what to expect, they just let it hit you in the face as time goes by and you are shell shocked.  Never in my wildest dreams did I ever think this person I am living with now would be my mom.  No one prepared me for this, no one even uttered a word it could come.

Seriously..   there needs to be classes for this.  Classes to take complete with video of these kinds of things BEFORE people take home a sibling/parent/grandparent.  Like prenatal classes, we need pre-caregiver classes.  If I had the money I'd start them myself.  Hell, no one even trains you how to change an adults incontinence products.  It's nothing like changing a baby, even an active baby.  Adults are a hell of a lot stronger and when they say no.. they mean it!  There is no holding onto a 15lb kid to do it.. they are full grown and I'm telling you, when dementia hits, they are bloody strong!  I can't believe how strong she is at times.