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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.

My aunt and uncle did spend the weekend and they’re not running through the door with tail tucked between their legs but they do fully understand what’s going on and the state she’s in.

I did get a response from the letter I wrote to the doctor~we connected on Thursday and she needed to talk to my mom to get our case manager’s phone, well, extension number.  She was going to call and tell this case manager that there is absolutely no way that my grandmother is in any way capable of making the decision to go to a home.  Or any other decision for that matter.  The doctor also connected with my mom and they had a good talk.  She informed my mom that the evaluation she requested to have done independently~grandma failed that “test” badly and should not be getting a say.

So now we wait.  I have no idea if a successful call would have been made on Friday but I doubt it.  I guess anything is possible.

As for grandma, well, she’s just hanging in there.  Saturday my dad called down from the trailer to see how things were going and grandma didn’t even ask where they were, she was just concerned about where the dogs had gone… however, when they got back and I let the dogs into the backyard, I heard her ask my aunt whose dogs they were!

Then later on she sat down and said she’s getting old and that my aunt and uncle had wanted to walk somewhere just up from the church and they went on that walk and it took a lot out of her.  She was so glad that the dogs were understanding all day.  Earlier she had asked them to not expect too much of her and they laid down.

So it’s been an interesting few days and an enlightening day today.  I don’t know who I was and I’m not sure she knew who I was.  But that’s okay.

In 2001, things were really bad between my husband and me and I was having issues with a cough and a wheeze.  I was sent for a chest x-ray and a Pulmonary Function Test with nothing found and the doctor gave me an inhaler to open the passageway.  It worked.  I split from my husband in 2002 and things settled down.  I haven’t needed that inhaler in years~it expired in 2009~and now, every time I’m at the house, I suddenly have that cough and wheeze back~stress???  I think so and if I feel that way, I can’t imagine how my mother feels!

Really?

All I can say is “WOW!”  The system we have here, sucks.  Period.

My mom is barricading her front door so that she doesn’t have to worry about grandma up and walking out.  If she goes out the back sliding door she exits into a fenced in backyard with gates that are locked.  So she can wander, in circles, around the pool but she’s not getting out!

It was suggested that we label all her clothes to assist with her being identified if she does wander off… this has been done.  It was also suggested we get her MedicAlert (I’m thinking any other medical jewellery would suffice) as well to assist in safely returning her home.

But I still can’t believe that the CCAC can be so stupid!  It’s as though we are lying!  Like we are making it all up!  Like my daughter and I don’t have to sneak out of the house at the end of a visit to try and save grandma from either wanting to come with us or looking to leave a few moments later.  We just do it… because it’s FUN!

Monday my mom had not one but three fights with grandma because she wanted to leave.  The last one was right after we left.  My dad went to the front door and took her coat away from her and told her she wasn’t leaving.  “You can’t tell me what to do” was the reply he got.  It reminded me of a 5-year-old stomping her feet and saying “you’re not the boss of me!”

Yesterday, the babysitter was there for the afternoon.  At one point my grandmother told her that if she didn’t shut up she’d slap her!

None of this goes up the line to CCAC… as a health care worker myself, I know that this person, should not feel unsafe.  Perhaps she knows grandma well enough now to know that grandma doesn’t have the strength to do so, or she’s familiar enough with disease to turn the other cheek.  Either way, it’s not right!

And I believe grandma is literally in her own little world.  I think her life now is like one big hallucination.  If she can walk out the back door, into the backyard and stand there and look across the pool like her mother’s house is there, she’s got some weird stuff going on in there!

My aunt and uncle are coming for this weekend so my parents can get away and open the trailer.  It will be extremely nice for them to be able to get away without having to take grandma along with them.  My daughter and I will be going up just for the day on Saturday.  I’m going to the beach… ah, I digress!

I am debating on sending a detailed letter to management at CCAC–IF there is a manager!  Someone higher up!  Someone who might listen but I won’t hold my breath on that!

This is just a nightmare. I really do understand that my grandmother is not the only the one in our community who needs a bed and I understand that there are only so many beds but I still can’t believe how badly all of this has been handled.

I’d like to actually go to the newspaper but perhaps that’s a veiled threat I can insert into my letter!

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