Feeds:
Posts
Comments

I really wish the CCAC workers had to actually deal with their own family member(s) because I can bet they would want something done really fast!

Yesterday, grandma hit my mom.  My mom has said so many times that she didn’t think grandma would ever hurt her despite my warnings.  The biggest question I ask myself now is what do I do about it?  Nobody seems to want to listen, or make an effort to do anything about it!  Do I make another attempt to call or fax the doctor?  What else can she do?  She could start the antidepressants which might help some.  I know she seems to be in the throes of another bladder infection but how many excuses does my mom need to make?

All of grandma’s behaviour still has me wondering what she was like as a child… was she spoiled because she was the only girl?  Her father was her favourite and she told my mom that she and her mother didn’t get along well when she was young.  Again I wish my great-grandmother was still here to ask.  Again I wish that I was a wiser thirteen-year-old and could have thought to ask then.  But at thirteen you don’t think of the adults around you getting older.  You don’t think of them falling apart like this… especially grandma as nobody else in the family had Alzheimer’s.

So I find myself in a dilemma, wondering what to do.  My mom can’t keep going through this and my mom can’t keep making excuses.  Bladder infection or not, I don’t care.  This behaviour is hiding beneath the surface and with each infection she has, it seems to take another chunk out of her brain.

The new home opens tomorrow for admissions and I so wish that she’d be one of the ones going.

My mom didn’t send her to the day program today because of the bruises she has.  She almost fell twice going through the sliding doors so has bruises from hitting her arms on the door frame, then later she hit my mom who, in turn, reached out and grabbed her hands to stop her from doing it again.  Grandma’s skin is so thin that she bruises that easily and my mom didn’t want them to think she was abusing her… they’d know by now if that was the case, she’s been going for a couple of months now with no marks.  Sometimes s**t happens and most medical staff (I being one of them) know that.

But it’s so hard to day-by-day watch her recede into the unknown… to become someone we don’t recognize and vice versa.

It’s incredibly sad and nobody will do anything to help.

Experiment…

It’s been a while, again, I know!

There’s always so much to tell but yet so little.

Grandma had another bladder infection which sent her off the rails even more than usual.  The not-so-unusual but unusual-to-us that came of that was that she doesn’t seem to have come back around, it’s like it fried another part of her brain.

She has been wanting to leave, again.  So Thursday evening my dad suggested that we let her leave; follow her, but let her go out the door.  So when grandma said she was going to head home my mom just said “whatever, go, goodbye” and grandma proceeded to walk out the door.  My dad slipped his shoes on and headed out after her, staying a bit of a distance behind.  I have to add in here that she is extremely poor on her feet.

It was about the time for my daughter and I to leave anyway so we got into our SUV and followed behind while my mom got into theirs and did the same.

I ended up passing the situation and she did pretty good until she was about a small block and a half away from the house when she stopped the first time at one of those phone/cable boxes that appear here and there on people’s boulevards.  My dad ducked behind a tree at the last minute as grandma leaned on this thing trying to catch her breath and looking around.  A moment or two later she was off again but staggering quite badly.  I had gone ahead and turned around initially and come back, meeting mom on the other side of the street who was concerned grandma was going to fall and break a hip… an unfortunate possibility and one that would not actually teach grandma a lesson.

She made it the length of that street before she had to stop at a fire hydrant and lean once again to catch her breath.  By this point I had quickly circled around and come back and my mom had parked and was getting out and asking grandma if she wanted to fall, break something and end up in hospital.  Grandma was in tears.  She said that she thought she just had to walk a block and she’d be at Columbia St.  We can’t really relate anything specific to Columbia St. other than it was the northern most border of our city way back in probably the early 60s.  From there she would be able to walk a very long long block and be “home” if that’s where “home” was in her mind… good chance it was.

So we have a better idea what she’ll do if she walks out.  The biggest concern being a fall or someone else watching us following this old lady and calling police!  Always a secondary but potential problem because grandma certainly can’t tell them who we are!

All fingers are crossed that she gets into the home when it opens at the end of this month.  She needs to be there.  She needs that kind of care and mom needs the mental break or she’s going to break.  This entire thing has almost broken my parents apart.  Much more and my dad will be sleeping on the couch, the house will be for sale and I will be spending Christmas’s in two places!

Can I get out?

Grandma has become incredibly restless again.  She wants to leave, she wants to go “home”.  However, she can’t tell us where “home” is.

I don’t expect her to.  As I have said before, Alzheimer’s patients tend to have hallucinations and delusions so there are in their own little worlds, usually based on some memory or a time frame that they can’t tell us about because they don’t know who we are or we are made up to be part of that world.

And when I use the term “world” it’s not Star Wars it’s the fact that they are in a different time and place than we are.  We live in the real world in real time… they have regressed to another place and time.  It’s like when we had imaginary friends as kids–for a time, we resided in our own little world.

But they do it because their minds are telling them this is what they see and they can’t differentiate between old and new or that times have changed, vehicles look different, because they are seeing what they want to see.

Yesterday my parents took her to the trailer so they could cut the grass, look after the gardens, check in, etc. and they came home around 3:30.  That’s when grandma went into the backyard and when she came back into the house she asked my dad if she could get through the gate at the side of the house… No.

Then she asked him if he would move the wood at the front door so she could go out… No.

You live here.  This is your home.

No it’s not.  I need to go home and make dinner for my family.

My mom complains and tells my grandma that she’s been told a million times that she lives where she does and she’s not to go out the front door.

I know my mom says that out of frustration more than anything.  But it’s frustrating for me because it’s as if she doesn’t know any better.  She can tell her two million times and it’s not going to change anything.  If you’re telling her when she’s in her “world” it’s not going to go very far.  The times she’s lucid and you tell her, it’s going to disappear because she no longer has the ability to process and keep that information on file, nor does her brain know how to access it!

This past Thursday there was an “incident” with the babysitter.  It should be reported but it’s not going to be, for the time being.  I ride a fine line between being a health-care provider and a daughter and my mom has to realize that sometimes those lines get crossed when it comes to her expectations.

I have written a letter to CCAC, I just have to edit it and run it by my mom before I send it.  Something needs to get their attention and something needs to happen.  She needs to get on the short, short list!

It’s frustrating when you get left on your own to deal with these things!

What a Change…

The week grandma spent in respite went really well for my parents.  They went to the trailer and enjoyed themselves immensely.  It was like another world.  A different world.  The world the way it should be.

Grandma also did quite well.  The staff apparently love her and think she’s so cute.  Hmmm… insert large question mark here!  How does someone who causes so much misery at home be that sweet elsewhere?  Is she bitter in her lucid moments?

When she has been at home though she’s driving my mom crazy.  She basically expects my mom to sit there and just watch TV all day.  If my mom naps grandma does something to wake her up and then says “it’s about time you woke up!”

My mom also moved her bed upstairs to an empty bedroom.  Before she went to respite for the week she was bitterly complaining that “they had her sleeping downstairs so that if someone breaks into the house at night she’ll be the first one to be murdered!”  Sometimes it’s hard to believe what comes out of her mouth.  It’s also hard to believe that roughly 50 years ago this is a woman who more than likely never locked her doors!  Not at night, not when going to work or church or out for the myriad other activities!  It was just not practiced!

She is always calling my mom “mummy” now for everything.  My mom serves her breakfast and gets “thank you mummy”.  It goes on and on and in some ways, it’s creepy!

As for the week-long respite–she thought she was at another Christian Endeavour meeting!  Insert huge eye roll here!  But she did, apparently, have an episode one evening when she was insisting on going home to see her parents… it was a relief to know that she did that because it helps to cement the disease in my mom’s eyes.  It’s hard, sometimes, for me because I understand it better.

I’m glad my dad looked up the disease.  He did define it quite well the other night… it’s as though a thick substance (think tree sap or something else gooey and yucky) is poured onto the brain and it seeps through all the cracks and crevices we associate when we think of the anatomy of the brain.  It prevents communication between all the brain cells and various parts of the brains… it doesn’t allow the synapses to fire properly.  As I said in a previous blog, hallucinations and delusions become common because the person gets the “picture” of somewhere near and dear to their heart, in grandma’s case, church, and then the brain can’t tell them that this is a memory and so they think that is what they’re seeing so that is where they are!

it reminds me of Harry Potter when in the first book Mr. Ollivander, the wand maker, tells Harry that the “twin” to his wand gave him that scar and that He-who-must-not-be-named did great things… terrible, but great.  It’s like Alzheimer’s in a way… fascinating disease but horrible!!

So now my mom is “stuck” with her until July 31 when she gets a weekend respite again.  CCAC has made no contact whatsoever, not even for an update.  Can’t even be bothered to ask how things are going, nothing!  My mom finds it difficult to call them because my grandma is always there and, despite being deaf, hears every word!  I might have to fax off yet another letter!

Well the first weekend went beautifully!  She was teary at drop-off but apparently settled quite nicely.  They went on a short bus trip for coffee and a doughnut and apparently she played the piano and was quite at home.  I, however, was shocked when I arrived at the house on Monday evening.  I didn’t know what to expect really and I was on the verge of expecting just about anything except when she said she just got back from a Christian Endeavour conference in Toronto!  I was floored!  I was trying so hard not to laugh as I asked her how that was and she said it was wonderful!  Truly shocking!

Her mind seems to be stuck on church and, it seems, these Christian Endeavour events.  She went every year to wherever they were held.  When they came here, she helped and played the piano.  I can see the links but it’s incredibly difficult to keep up sometimes!

So the next round is a week-long stay starting June 29.  That will be wonderful for my mom!  On top of that, every Sunday starting next week, she will be going to the same place for the Day Program from 9:45-2:45.  Not a lot of time, but enough for my mom and dad to get a few things done around the house.

I can’t say whether this is progress or not because I have no idea how things are going with getting her into a bed at a home.  At least my parents are getting a bit more of a break.  Something finally gave somewhere along the line!  For that I am thankful.

So I will be off to, perhaps, another Christian Endeavour meeting this afternoon… I’ll keep you posted!

Mom took grandma to see a geriatrician and it was determined that she is entering the final stage (7) of the disease… duh, I could have told them that!  Try as I might I just can’t seem to get anyone to listen to me!  I digress…

Anyway, they went because my mom had asked if there was any point in her staying on the Alzheimer’s meds any longer because they obviously weren’t working and this referral was made.  The short answer is no.  They may no longer work to slow the progression of the disease but they can help with something else–I’m sorry, my own mind has drawn a blank!  They are adding an anti-depressant to it to help with the anger management issue since she threatened to hit one of the PSWs a while back!

So this weekend is her trial weekend!  She goes in Friday and comes home Monday morning!  I think mom is getting apprehensive about it because, well, grandma is her responsibility and what if something goes wrong?  Or what if…? What if????  It’s the biggest question ever asked as we all, more often than not, try to predict our own futures!

All the same things keep going, last night she was looking for her coat so she could go home; yesterday morning she didn’t know either of my parents.  She kept scowling at me last night as I sat there and tried to smile at her here and there so I stopped.

Alzheimer’s and dementia are such horrible diseases!  I don’t know how I want to go but I certainly don’t want to go that way.  As for whether that is now a possibility or not is not determined.  Her mother and both of her brothers were fine.  Her dad died too young to tell.  I question whether her version is hereditary or if it was due to her sitting around most days doing little more than watching TV.  She read books, mostly the bible and devotionals, and she did word search puzzles but nothing that really got her brain working.  I am still working full-time, do Sudoku puzzles, write (novels, blogs, etc), and feel that I am so busy and stressed that I forget things, badly sometimes… I find myself reaching for words; trying to finish a sentence before I forget what I was trying to say; forget to grab things before I leave the house… All I can do is hope that it’s not some early onset version of the disease and that it’s stress and fatigue related.

We all forget things, we all get busy and our minds wander (which I find is most often the case)… is that disease?  Or is it stress on our minds?

We might never know!

In the last two weeks, it’s as though the record has a scratch and the needle just keeps bobbing on the same line of the song over and over… it reminds me of the part in the movie Frequency when Dennis Quaid goes into the murdered girl’s apartment and the record is stuck on the title line of the song Do You Remember (when we met).

Grandma cycles through not knowing who anyone is, where she is and picking on the dogs.  I have to wonder if she picks on the dogs because they can’t talk back!  Of course they can bite.  My concern is that even though they have never struck out before that one of these days she’s going to.

On Thursday evening, my dad and daughter had to go in the pool to fix the cover as the roller had blown into the pool earlier in the week.  It had broken two straps.  Grandma had fixated on the dogs and it was awful.  She was constantly wanting to know where they were and if they made a peep she was telling them to be quiet.  She would tell the Golden Retriever to lay down when he didn’t want to.  When he did, she told him to come here!

When I went outside to find the little pug’s ball, both the dog and grandma followed me outside.  The dog had grabbed one of her chickens which she dropped when I found and picked up her ball.  So I grabbed the chicken and set it on one of the pool steps because my dad needed my help.  The poor dog had other ideas.  She had seen her chicken and wanted it.  She makes this little bark crossed with a howl when she wants something and grandma started to shush her.  I yelled that she wanted her chicken but only got “what’s a dicken?” as a reply.  I finished helping my dad and went to retrieve the chicken from the container under the stairs where it had rolled and grandma says (quite sweetly I might add) oh, she wanted her chicken!

Things went downhill from there.  When my daughter and I left, she was trying to get our poor Golden to go down the basement stairs.  She hasn’t lived in the basement this year (except the first 11 days) and why she wanted him to go down there with her is beyond all of us.  We had told her ten minutes before that he can’t do stairs.  His hips are too bad and he can barely make the two steps up to the deck outside anymore let alone a flight of thirteen steps.

On a more positive side, CCAC returned last Monday to re-evaluate her.  This comes on the heels of the doctor calling to chat with her about grandma’s inability to make her own decisions and that she had failed a “second opinion”.  Of course the CCAC can’t just take the word for it, they have to come out and do their own… however, they deemed her unable to make her own decisions any longer and my mom was finally able to sign the forms for LTC!  The Case Manager couldn’t believe the change!  I was livid!!  There hadn’t been any change, she just failed to see it.  There was no way she could go back to the office and have such a discrepancy between the two evaluations.

However, she did have to take the information she gathered back to the office and work through it to determine the next steps–I guess whether she goes on the regular list or the crisis list… we never heard.

Lastly, I did some research.  Alzheimer’s patients do have hallucinations.  They can picture faces and places and think they are living within that.  Basically the brain starts firing memories that make it impossible for the patient to discern what’s real and what’s not because the synapses are no longer firing normally.

It answers soooo many questions!!

Fingers crossed that this week brings answers.  And I hope they are answers that have Grandma going on the Crisis list.  Grandma goes for a trial stay for respite in LTC at the beginning of June.  It might not be soon enough.

Follow

Get every new post delivered to your Inbox.

Join 217 other followers