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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!

I know that many of my posts are sheer frustration right now and I try to limit that but if you have a relative with Alzheimer’s/dementia you will understand… if they are early on in the diagnosis, you won’t understand, not yet anyway!

I have written two letters: one to my grandma’s doctor bringing her up to speed on where things are at and that my grandma needs to be in a home.

The second to our not-so-hot CCAC who has severely dropped the ball!

Backtracking a bit here… about three weeks ago I called CCAC on behalf of my mom and left a message with my grandma’s care coordinator saying that something needs to be done and asking if the LTC application was, in fact, for the short list… well apparently this person was changing regions and someone else would be taking over my grandma’s care and someone would call in a week… no call has ever been received!  According to my sources (and working in family practice you know just about everyone…) this particular care coordinator is still down as my grandma’s!!!  I also found out that across the region there are also roughly 30 “Idle bed” which are usually privates but they are for those individuals who need a bed ASAP.

Grandma has more bad days than good… last evening she was clear as a bell for the first time in about three weeks.  She knew who I was and remembered that my mom and I were going grocery shopping.  She remembered while we were gone and she had a conversation with us and laughed with us and even made a few jokes… but this is so rare that it really does come as a surprise.  Of course the flip side to this is that at 2 a.m. yesterday she got up, turned on a bunch of lights and was making a sandwich when my dad went down and asked what she was doing… she said she’d just arrived home from work and was making a sandwich.  He informed her it was the middle of the night and that people were trying to sleep… it was then that she looked outside and realized it was dark!  So mom had three hours sleep as she also has a cold and couldn’t breathe after she went back to bed.

My mom keeps getting sick and I’m sure it’s because of the stress on her.  She also goes to bed and has chest pains… I figure these are mini panic attacks.  She should get checked out but other than checking her BP I cannot make a diagnosis or treat.

So I have to decide if I’m going to let her read the letters this afternoon or just fax them off tomorrow… if I let her read them then she might not let me send them… someone needs to step up and dish out some hell and my mom isn’t in a position to do that right now… I also know my way around the system a bit better.  When I told my mom I had written these letters she told me that the first thing the doctor will ask is why she didn’t call… her answer… she doesn’t want to feel like a nuisance!  Try to make her understand that she’s not a nuisance!  And trust me, I know there are many out there!  They drive me crazy at work every other day!

I will let you know soon what that decision was.  The alternative is to get my dad to read them.

With each passing visit to my parent’s, we never know what were getting into.  Will she be good?  Or will she be worse than the last time.

On Wednesday grandma didn’t want her coat in the front hall closet because “the people who live in this house might try to steal it” she said.

Yesterday she didn’t know my mom when she got back (babysitter was in for the afternoon) and had spent the whole time just wandering the house.

Last night after I left she told my mom she knew who I was but didn’t say anything because she “didn’t want it blabbed back to her sister-in-law things she said”.

Tonight we don’t go over; we are at the symphony.  It will be interesting to see where things go tomorrow evening then.

I tried calling the CCAC this morning on behalf of my mom and ended up leaving a message for the Care Coordinator assigned to my grandma.  She’s changing regions but she was going to put my grandma’s name down for someone to follow up.

Now this is really starting to tick me off… At the time of diagnosis very little assistance was required and by the time assistance was required, they had to open a whole new file (again the care coordinator had moved on).  That meant having to come out to reassess.  Then mom got a babysitter for one afternoon a week so she could go bowling.  Then she got a second afternoon added when her bowling day changed.  That was steady until January when grandma ended up in hospital for 11 days.  Of course more was offered but by the time the nurse got there in the morning, my mom had already had to get grandma out of bed.  Oh, plus they went on strike between the two hospital visits which created an even bigger gap in the “needs fulfillment” department.

So here we sit, in limbo yet again… what’s the point in trying to streamline things ever?

Our options now are to keep the status quo and see how long this absurd visit is going to take OR take her to emerg and tell them that we just absolutely canNOT look after her at all anymore and they will have no other choice but admit her and we will start paying $55/day for them to keep her in hospital until a bed comes open in LTC.

How is this fair?

Now when we need them most,

The End of the LIne

Grandma has stayed home these last couple of weeks and isn’t doing too badly, physically.  Mentally, she has severely made a turn for the worse.  She is constantly asking my mom about her parents (her dad died in the 50’s, my great-grandmother died in 1988), her brothers, her grandparents; the list goes on.  She took a tour of my parent’s house (with my mom) and was speaking as if was her grandparent’s house, including that her aunt changed the curtains in the living room!

She thinks my dad is some sicko guy who peers into the living room when she’s in bed.  She wakes early and keeps my mom awake.  Poor mom, she’s at the end of her rope.  She can’t move, including going to the bathroom, without grandma following her.  They say that those with dementia go from being the parent to being the child and we are watching as that comes to life before our eyes.

Two weeks ago she came to me and asked if she could talk to me.  She was worried about my mom and grateful for how much my mom looks after her.  She also said that she was so glad that my mom found the husband she did.  She wants us to know that she knows she is sick and that she doesn’t know how much time she has left and that we hope we saw her as the head of our family once.  She is so proud of all of us and grateful to have us looking after her.  She knows she can’t go home and that she has a bed here.  We talked about my great-grandmother briefly because when she was sick we put a bed in their dining room but there was no main floor bathrooms in those old houses so we put a small camp toilet in the downstairs closet for her.  At least now grandma has a main floor bathroom and the living/dining area is closed off with doors so it’s a bit more private for her.

Since then she has severely gone downhill.  One of these days she will either not wake up or she will be going to a home.  My mom (at my continuous encouragement) is going to call the CCAC coordinator and make sure grandma is still on the short list.

My mom cannot go on this way.  She’s stressing and it’s going to cause great health issues for her.  I want to see her out from under that stress blanket.  Maybe she can get the knee replacements she needs and look after herself much better than she is right now with all attention on grandma.

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