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.  

Never in my wildest nightmares...

I am sitting here, in my mom's room, it's 8:07 pm and I've been battling her for at least an hour and a half.  She continually tries to climb out of bed.  If she does, she will fall a few feet to the ground.  Not the first time she's done this but recently, the past week or more this is a nightly occurrence.  And it's a frightening one.  Twice now I have had to use soft restraints on her to keep her from climbing over.

  I needed to feed our dogs so I left her for a few minutes with her psw while I quickly fed our dogs.  The birds got no food yet though.    I tried to get her to take a small, light sleeping pill but she refused it continually.  I finally got it into her mouth, just a quarter of a pill, but I'm not sure she kept it in her mouth.  I had to push it back in once then I had to leave her with the p.s.w. for a minute to go to the bathroom and I'm not sure if she spat it back out or not.  The psw said she didn't but the girl isn't all too swift.

I'll be back

geez things are escalating so quickly.  I had no idea.  I'll be back to posting on this section as soon as I get some time.  Have a short list of items I want to let you know about.  Things that you would never think would happen to your elderly parent.  Things you have never even considered.  I never thought I'd be in this position with my mom in a million years.  She has gone from a vibrant, driven, community oriented lady to someone that doesn't know my name at times or her name for that matter in less than 6 mths. :-(

Let's talk ambulances.....

huh?  what?  You thought they were free???  lol Surprise!  No they are not.  Every ambulance you take is $45.00   But your parent is a senior...  too bad, it's still $45.00 and let me tell you something.  If you don't pay it St. Michael's hospital will sic a collection agency after you.  Actually after your elderly patient.  Not sure what other hospitals do but that's what St. Mike's does...   They don't realize that seniors on fixed incomes of Old Age Pension and the Supplement only have little left over at the end of the month if anything and that $45.00 means a significant amount of meals for them.  It's food in their tummies.  It's milk or vitamins for their frail bones.  But it's needed more in their coffers. 

A collection agency actually called my home.  I let them have it.  Next thing I know we get a letter, addressed to my elderly mom saying she needs to pay it to the collection agency or else.   that it will effect her credit rating!  She had 7 days to respond to the below letter.....

I responded..  hahahahahaha   I don't have my letter but the end of it told them they had 7 days to respond to me.  I also offered them 2 ways to pay off this $45.00   She could write them a cheque for 1 or 2 $ a month since that's about all she has left at the end of the month and I wanted a receipt for it each month.   Or..   they can sue her in small claims court for it and I'll gladly wheel her in with her oxygen and the media in tow.

Funny..   I never heard back from them.    Oddly enough though, when I paid for her phone last time she was here there it was on the bill but no one said a word about it.

Oh..  just another word about ambulance bills..   I was told that CCAC covers them but when I looked into it what a farce that was.  The co-ordinator wasn't sure and then said it was quite a convoluted system and he wasn't sure.  So now I've stack up 2 more ambulance bills in the last few weeks.  yea!

Now I have started this I'm not so sure where to go with it.  Some days I'm just so frustrated or depressed I need to vent so I guess this is typically what this may end up being.  A place to vent and not drive others as crazy as I seem some days.

I've always been a caregiver I guess.  When I was younger I was my gram's caregiver.  My maternal grandmother.  She lived to almost 102.  Was a little whippersnapper that one :-)  She lived on her own until after 100 believe it or not.  Was requiring a bit of extra care at that point because she broke her pelvis running. Yes.. running.  She bounced back though but at that point my mom had a stroke and I had my first heart attack and I was only 42.  Had my first cancer @ 32.  2nd one @ 38.  And dealing with more crap with it lately.

Oh..  did I mention?  I have a potty mouth and tend to use it more when I'm tired so if you find this and read it and it offends you, don't tell me all about it because you've been warned and after that, I couldn't care less to tell the truth.  You didn't have to continue reading. lol  Oh..  I'm also pretty forward too.  I tend to say what's on my mind and since this is my blog I figure I'll go all out wild.

Anyway, my gram spent the last 2 years of her 102 yr long life in the nursing home across the street from us which made life easier in a sense however also more difficult dealing with a nursing home.

My gram passed away content and the way I hope I go.  She simply told her nurse she was tired and had had enough and she closed her eyes and that was it!  She peacefully passed on.  We both still miss her a lot but we deal with it. 

Now I'm my mom's caregiver and what an experience that has proven to be.  No one.. and I mean no one, gave me even an inkling of what it is like to take care of an invalid.  After almost 10 months in and out of hospital in 2010, at one point I had to put her on a ventilator to keep her going,  they shipped her home with me palliative.

When your mother or father enters a hospital and they try to shove them out before they are ready to go (St. Michael's Hospital in Toronto is very talented in this respect), you need to know a ton of stuff they are not about to tell you in respect to caring for your parent at home.   See the link on the side about St. Michael's Hospital for some of my mom's encounters there.  It should scare you enough to not use that place.

They (the discharge nurses, hospital admin, c.c.a.c.)  are going to tell you every line of bullshit possible to get you to believe you can do this single handed and have the ability to endure the path you are going to follow.  They will tell you that people do much better at home than in a Long Term Care Facility.  I actually don't know if I can argue that point at this time but let me tell you something, one is as bad as the other.  I've had experience with both.  They are going to tell you about all the help you are going to get and the people you can rely on, etc., ...  put your hip waders on folks... lots more bullshit coming your way.

For one thing...  They are going to more than likely require a hospital bed at home if they've been there for an extended time or had a serious illness and are weak.  Could be from a heart ailment, stroke, arthritis..   If you can't afford $3,000+ for that bed (do I sound like I'm kidding?) then you better be prepared to have Power of Attorney and then you are forced to use Welfare.  Actually it is a very smart move to have Power of Attorney done prior to all this so if your parent is still able to be on their own at this point then talk to them about this.  The forms are free here in Ontario via the Attorney General or you can grab one even at your local MPP (Member of Provincial Parliament) office usually.  It's FREE!!  Get out there and get it!  And you don't need a lawyer to fill it out either or to validate it.  You can however go to your bank and ask for a personal banker to help you because it does include both health and financial P.O.A.  Someone at some point is going to probably have to take care of their bills and such as well as make health decisions for them. 

The bed... yes indeed, that wonderful bed.  Don't let them put a roho cushion in it ok?  It's a bubbly cushion that helps prevent bed sores however it only goes in one section of the bed, about a quarter of it, where your tucus goes mostly and that one little insert in the bed is $1000.00  If your parent is on a fixed income they will never be able to pay for the repair or replacement of it.  My mom's lasted less than 3 1/2 years and I'm busting my ass trying to find someone other than myself that can help pay for it to be repaired or replaced.  Never mind the back and forth craziness of the company that makes the damn thing.

If your parent is unable to ambulate into that bed, then you get a hoyer lift.  That's another few grand.  And fair warning, anyone that has to use it hates it.  It's the most uncomfortable thing, if they have back pain it hurts their back like hell because there is no support.  If you have to get this thing be sure to get the smallest one you can, they take up a lot of room!  I mean a lot.  And for goodness sake, don't ever take their word for it that they got you the correct size sling because no one checks.  In regards to my mom's, they sent one that was too large for me and at the time I was over 150 lbs and she was only 82 lbs so imagine how well that went?  We almost dropped her but thankfully the person helping me managed to swing her over the bed just before she fell out.  cripes.. It took 3 times to get the correct size sling for her.   I'm warning you here...  check everything and double check everything yourself.  Read....  do research..  know what you are getting and getting into and it will make this a smoother process for you.

I of course knew nothing and took their word for it.  I can be quite the dumbass at times but I've always learned by my mistakes thankfully.

Then we have the wonderful wheelchair.  They made this tiny wheelchair for my mom, she's only 4 ft 8 inches these days...  over $2500.00 and then there is another wonderful roho cushion in it for an additional $600.00   $600 for her tiny little tucus. 

They will neglect to tell you that there is no help out there at all to pay for the extras either.  Those include adult incontinence supplies if needed (closing in on $400 a month depending on the size and quality and this is one thing you seriously don't want to scrimp on.), creams, rash prevention creams, body lotions (they're skin tends to dry easily in bed), bed pads, you name it, you're going to pay for it.  If they are on a special diet, no help paying for that either.  If your parent is only existing on old age pension and the supplement  there is no way in hell they are going to be able to afford all this stuff themselves.

With that being said.. you are going to have to go to the Welfare Dept. "Hardship Fund".  Isn't that a wonderful name?  Isn't it humiliating enough to need all this stuff without having to go to a public place and tell them?   If your parent(s) aren't able to ambulate there themselves they will make a house call but only under severe circumstances.  You know, it drives me crazy that our parents, the ones that fought the wars, or did the war effort (my mom for instance welded bombers lol) are now having to beg for help from the "hardship fund".  Disgusting.  You have to prove to them that you can't afford this stuff.  If you have a cable bill, that's too damn bad, they don't take that into consideration.  If they are paying something for you, then you shouldn't be using a luxury like cable.  Home insurance either!  That has to go too.  So I'm telling you right now, if your parent has life insurance or home insurance or anything of the likes, put it in your name or pay it once a year by money order so it can't be traced through their bank account and lie through your damn teeth.  Yes..  I said to lie.  They force these sweet people to lie and cheat so they can continue to live with a wee bit of comfort.

Then there's the C.C.A.C. oh joy...  The Community Care Access Centre.  This is almost an oxymoron.  If you are unlucky enough to have to deal with this crew, I feel for you.  These are the people that oversee your parent's care if they need a p.s.w. (personal service worker).  A p.s.w. will come and bathe them, change them, help them dress, do their teeth (if you're lucky), light housework for them (dusting, sweeping - again, if you're lucky), sometimes cook some food or groceries.  Now..  C.C.A.C. seems to think that some people only require a shower a week, some lucky buggers will get 2 even 3.  Some people get one hour a day help, some get two hrs a day..  the maximum is 14 hrs a week.  So if mom or dad lives on their own and can't balance well so is unsafe to bathe on their own, god help them if they get the trots and they've already had their shower that week.  C.C.A.C. encompasses many things including your introduction to the Long Term Care facilities in this City.  They MAKE you sign papers saying you want on a list for a nursing home.  They will lie to you, as they did to me and my mom (I was a much more ignorant person back then) stating that you must sign on to apply for nursing home to receive C.C.A.C. help including the p.s.w.'s.   C.C.A.C. also has a co-ordinator that comes into the home occasionally to re-access the situation.  In other words, to cut your hours.  At least that is how the people that they service see them.  They are always scared shitless that their small hours are going to be cut more.  CCAC provides inadequate care time for our families and expect us to take the brunt of it even though we have no training what-so-ever and they basically lead us blindly into being caregivers.  In my humble opinion CCAC needs to be dismantled and redone with actual family members/caregivers building a new organization with the knowledge of what's actually needed and wanted.  I honestly don't know how many times I've been told my mom needs more hours care every day and the utter shock when I tell people she is already getting the maximum hrs available and I'm always afraid she'll be cut back.  It's a constant worry that starts to wear on you after a while.

I remember one time my mom came home still ill from the hospital and our family Dr wanted a nurse to come to the house for the first couple of weeks and check her lungs and b.p.  So, all things considered I said yes.  Well the next thing you know CCAC calls me and tells me this is how it works... oh..  do you have a bp machine?  "yes" I said.. good... so the nurse will come and show you how to take her bp!  I stopped her right there and said "excuse me?"  I know how to take her bp with the home machine but the Dr wants her lungs listened to as well.  The nurse will show you what you need to know.  At that point I told them to forget it, I'm no damn nurse and wouldn't know a good lung from a bad lung and if they thought I was buying a stethoscope they were crazy.  They didn't appreciate my opinion.  I cancelled the nurse and let my Dr know why.  He agreed with me.  Cut backs, always cutbacks and it's the patient and caregiver that pay for it.  One wouldn't mind some of the cutbacks so much if we actually got something for it.

Don't get me wrong, I love my mom with all my heart and I'll do anything for her but if you are thinking of taking care of an elderly parent at home yourself you need to be very prepared for what you are going to do.  You need to know what help you are going to get and what you are NOT going to get and I'm sorry to say, the "not's" well outweigh the "get's".  Be very prepared for burnout.  Oh.. they don't mention that either.  They wouldn't dare.  But it's coming regardless of how strong and able-bodied you think you are to carry on taking care of an aging, ill adult.  Be prepared for depression, both yourself and the one you are caring for.  Be prepared for delusions and even hallucinations.  They very well may come although your parent has never exhibited it before.  All sorts of things that you've never thought of in your wildest moments are going to happen.  And CCAC will not be there to give you the extra hours or help you need.  No agency is really.

This is not to say that there are not any wonderful agencies out there but I find the ones that are are few and far between and are not, for the most part, gov't funded.  Toronto Hospice... amazing place.  Society of Sharing, another great place has "friendly visits".   There are other agencies but they require payment for services and if you are on a limited fixed income you are screwed.  For free services here there is a means test you must pass.

Don't forget, because your parent is old and ill, it doesn't mean they don't want to feel the sun on their face or a breeze pass over them and lightly kiss their face.  So you are going to need to get them out and the more the better. Even in our long and bitterly cold winters, they still need to get out now and then.   If you are disabled yourself, you are about to climb a monumental hill in respect to this.  It's extremely hard to find anyone that wants to wheel around an elderly person and it's so hard to tell them they can't go out today because you have no one to wheel them :-(  You feel like you are sucking the life out of them in a sense, taking away a treasured treat.  You have to be careful who you get to wheel around your elderly parent.  There's an art to it.  It's not just pushing a chair.  The cracks in the sidewalks are not your friend, and neither are the City ramps on sidewalks.  And learn how to push it properly or your back will hurt like hell.

Caregiver relief for you will be much needed however again, if you can't pay for it, there are very few places that can give it to you. There is a means test for this.  And the time is limited.

Get ready to at some point give up your social life.  I quite honestly can't remember when I went out to dinner or with a friend for any given time.  I can't remember the last social activity I did.  I see lots going on around me, in my community, in my City but I don't get the off time to participate.  Even with the small things.  If I can't find a sitter for my mom or if I can't take her with me, it doesn't happen.  Today was a perfect example.  Bloor St was closed for part of the day so the streets were walkable.

Get ready for fear as well.  For the both of you.  Your parent will start to fear things that are the norm.  My mom has for some strange reason developed a fear of the dark.  I have to leave a light of some sort on for her these days although it keeps me awake unless I'm so dead tired I drop anyway.  She has also developed a fear of being left alone for any length of time.  That could be from failing health, she is feeling weaker, more vulnerable.  Not sure but it's there and she's quite vocal about it too.

You are going to take a plunge into an abyss like you've never encountered but you'll do it with love, a resource of energy that you never knew you had and occasionally, when they tell you they love you more than life itself....  you'll know every moment is worth it.  Even the ones that bring you to tears or fear that brings you to your knees when they have a health crisis.

Later...   upcoming conversations include..   ambulance bills..    p.s.w.'s and their training...  respite at the local Long Term Care facility...  and a few other topics that you probably won't believe.