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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!

Our CCAC Case Manager (I hate the use of that word in this case because they probably couldn’t manage a bee hive without someone else’s help) ended up making it earlier and did somehow manage to get my grandmother to not only agree but sign to give her consent to going in to Long-term care!!  After a few short minutes of being at the house she determined that grandma was perfectly capable of making that decision!!  Really?  Honestly?  That’s what it comes down to?

The entire afternoon before this little meeting grandma thought she was at church and she started looking for a phone book so she could call her parents to come pick her up. She got so upset when she couldn’t find one that she started to say that her dad would be out to clean the church that evening and she could go home then!  When we tried to tell her that her parents were dead she actually argued, loudly and adamantly, that not only were her parents alive but her father still worked at Seagram’s and cleaned the church.  When told she was 87 years old, she knew that but still thought, despite then being told that her father would be 117 and her mother 115, that they were alive and well and still working!  I know that she can no longer connect those dots rationally but as a person whose synapses are still firing normally it is still beyond difficult to accept that another human being can no longer make the simple connection between her being that old and still having parents that are alive!

The bottom line is, she signed the papers and the application has finally been put in.  Unfortunately, because they can’t be bothered to listen to US (because we’re only with her EVERY DAY compared to their FIVE MINUTES), she is on the regular list which means that the shortest wait time is 337 days.  She should be on the crisis list but nobody listens to me!  I am the lowly office RN who has probably seen and done more than these case “managers” ever will… it’s always easy to push a pencil and listen to the absurdities that the bureaucrats manage to come up with and then somehow manage to rationalize it so that you can put it into “practice” without it affecting your conscience!

So perhaps I’ve moved past the “woe is us” stage and into the angry stage… it probably won’t get me anywhere, until I can come up with another way to get around it but at least it’s fuel for the fire!

I have considered sending that letter to her doctor.  Let her know that despite her application now being in, they did NOT put her on the crisis list.  Perhaps the doctor can do something that we can not… but it’s just an idea yet.

Yesterday she didn’t even know my mom, at least early in the day.  She kept calling her Dorothy after an old neighbour.  I am usually another neighbour up until Monday night when I was asked how a relative was who I barely even knew before she died!  I don’t know if she knew who I was last night or not.  My daughter sleeps over there on Saturday nights and when I called to say goodnight grandma had, at some point earlier in the evening, managed to miss the toilet and empty her bladder on the floor instead.  During my call, my mom had just finished putting her to bed when my daughter and my dad heard her crying… my mom went and asked what was wrong.  At this point, she called my mom by the right name but then went on to say she couldn’t find her baby!

And still the CCAC thinks she’s capable of making a sound decision.  As I said, perhaps they should come over and spend an afternoon, like a fly on the wall, then make that decision.

So we get to go from bad to worse… how?  Well…

Grandma ended up in emergency this past Monday with a bladder infection.  She was downright nasty to some of the staff.  On a happier note, my uncle had come down the Thursday before to help out a bit and it really did help!  My mom and dad managed to get out of the house a few times to get things done and he was a pleasure to have around.  He even went to emergency with my mom.  He did, however, have to go home on Tuesday but told my mom to call him again if she needs him.  It was really great!

But… enter CCAC… I did fax off the letter to CCAC but held onto the one to the doctor.  CCAC did get out for a home visit and an assessment but informed my mom that my grandmother still has to consent to going to a home!!!  We have Power of Attorney, she is completely incoherent (doesn’t know who we are most of the time and doesn’t know where she is) and yet she has to say that yes, she agrees to go to a home.  And what if she doesn’t?  Is the CCAC going to provide 24-hour in-home care to a woman who can’t tell night from day?

My mom ended up talking to the doctor on Friday for some sleeping pills as grandma had to be told to go back to bed at both 11 p.m. and 4 a.m.  She told the doctor about the conversation she had with CCAC and how grandma still has to give consent.  The doctor said that she can’t give consent.  She’s no longer of sound mind!  She said she’d look after the paperwork.  My mom called her case manager at CCAC who totally disagreed.  My mom gave her a piece of her mind and told her to call the doctor!  How much sleep do my parents have to lose?  As an RN, I agree with the doctor–she’s not of sound mind.  She is not capable of giving consent.  She could say yes and five minutes later have no idea what we’re talking about.  These are supposed to be nurses…

Because I work in family practice, and I’ve done the referrals to CCAC for everything from PSW care right up to in-home assessment for LTC, I see that other people are getting the care they need so I know!! 

Apparently the case manager was working on a crisis situation Friday afternoon (gee, another case where someone else is getting better treatment as I consider my grandmother as crisis too) and wasn’t sure she’d get the chance to call the doctor.  I told my mom she should call the doctor back Monday morning to a) see if the case manager had called and b) to let her know that they still think they need grandma’s consent.

So what happens now?  Your guess is as good as mine but it’s not looking good!

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