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.

Back Home…

Okay, so the CT scan showed that she has COPD… likely what I suspected except that apparently the shirt factory would have been full of small fabric particles.  I still want to add asbestos to that list.  Anyway, she is on inhalers and she is actually doing quite well.  I say that with a lot of hesitation because as we have already experienced, it could end any time.  She is finally getting the hang of the inhalers, I believe, but that’s got to be hard at her age and in her state.

She came back home on Monday afternoon and though she’s still sleeping a fair bit she’s back to walking on her own.  She’s even washing again!  Will probably never make it back to her basement apartment (and probably doesn’t even remember it exists) but maybe part of the problem was the lack of oxygen to her brain… one never truly knows!

She’s also eating better and Friday night she was very grateful for all of us and she started to cry.  She was so thankful that she had a wonderful family to look after her and in such a bad state.

But mom still needs more help.  And every time she gets a nurse in it’s someone new so before she can leave, she has to give an update about what’s going on.  So that’s pretty crazy.

We’re into baby step mode.  We have to wait and see where all of this will take us.  I know she will not improve as far as the dementia is concerned but will continue on that downward spiral.  Maybe it will slow down at least.  Maybe just a little bit.  I’m not, in any way, getting my hopes up.  Maybe, despite the continual snow fall, I’m just trying to find the silver lining…

I hate to use army terminology there but grandma is now on her second tour in hospital.  She’s at the other area hospital this time.

Her doctor made a house call Tuesday evening and rediagnosed her with pneumonia.  Started her on antibiotics.  Wednesday morning she did great in the morning apparently but by the time I saw her at lunch she was really down–she ate like a bird and was mumbling.  Thursday morning my mom was all concerned because every time she walked she got all shaky and short of breath.  I was trying to assess her via text message!  Anyway, went over and told mom to call the doctor first.  Turns out the doctor said to take her to emerg.  So off they went.

The chest x-ray didn’t show pneumonia and the doctor was ready to send her home except that she couldn’t get up and walk at all (physio had brought a walker) and he told her if she can’t walk, he can’t send her home.

So she’s been in since Thursday.  Once more we have treks up to visit.  They did a CT of her chest on Friday which indicates (to me anyway) that they saw something on x-ray, or it concerned them that they saw nothing on x-ray.  BUT, the nurses won’t give the results because the doctor hasn’t seen the results.

She again wants to go home and doesn’t understand that she has to stay.  Unfortunately this time, we can’t even give her a reason why she has to stay.

I’m concerned because they did the CT.  She never smoked, but her father did I believe.  She worked in a shirt factory so a lot less in the contamination department but there could have been asbestos in there for all we know.  So we wait yet another day…

Yesterday they moved her to a ward and she kept asking who all these people were when we were up last evening.  And the numbers in her mind seemed to multiply.  By the time we left she was talking about having to put in bunk beds!  I feel badly for her not understanding… not having the ability to understand what is happening to her.  It’s difficult to even imagine what that would be like.

Home and Resting…

Grandma made it home on Tuesday.  She was brought in my patient transfer.  She was so glad to be home she cried.  And then she slept!  She has done a lot of sleeping.  She’s not doing all the exercises she’s supposed to be doing and she’s eating like a bird.

I guess this is a 30-day trial and then CCAC will reassess and see where things stand.  I guess if things haven’t improved in that time then the application goes in for long-term care.  It’s a stupid system.  Yes, I used the ‘s’ word!  But it is, seriously.  My mom met with CCAC twice at the hospital and twice she was told to bring a list of nursing homes.  STILL the application has not been processed.

I know I am an RN and I shouldn’t put down my own profession but these decisions are basically being made by bureaucrats who probably can’t remember the last time they provided hands-on patient care let alone being the caregiver for an elderly and sick relative.  How can they even begin to try to make appropriate care arrangements?

Anyway, mom has help in the mornings to get her out of bed.  Physio, or Occupational therapy are going in once a week to try to get her going again.

She’s been home since Tuesday and everything wears her out.  She has a meal, she goes to sleep.  She does her exercises (when she does them) she goes to sleep.

It’s not much of an existence.  And really that’s all she’s doing.  She’s just existing.


Anyone who has ever known someone with Alzheimer’s will understand the question I ask.  I was raised going to church and though I haven’t been in several years I feel I am close to God and I pray and I talk to him though, as usual, he rarely speaks back except to give me “gut feelings”.  I digress… so I struggle with Why? quite often.

Watching my grandma in hospital the last 10 days has been heartbreaking.  Medically, she’s well.  The pneumonia and bladder infections have gone.  She was “very weak” we were told.  Tuesday they got her up with the walker and she barely moved.  Wednesday, apparently, she booted it all the way down the hall.  They were going to get her on the stairs on Thursday but Thursday she was “too tired” so they either didn’t get her up or she didn’t really do much for them.  Friday was a disaster.  So she remains an inpatient and we all sit by and wonder what will happen next.

But I find myself asking the question Why?  Why did she have to develop this evil disease in the first place?  Was it because she had such an unpleasant life that it’s best that she not continue to live in that past?  She often brought up her trials and tribulations when we spoke of ours.  For quite some time now she hasn’t wanted to do that.

Last night she told us to wait while she got out of bed and got dressed to go home.  We tried to explain to her that she can’t walk.  That we can’t take care of her because she needs 2 people just to get her from the bed to a commode.  We are not equipped at the house to do that, nor could my mom look after her once the weekend is through and everyone returns to work.  My mom has a bad back and 2 bad knees.  I have a worse back than she and now 1 bad knee.  I am an RN in a family practice because I can’t do the lifting a hospital nurse does.

But she can’t understand that.  And I stress the word can’t because her Alzheimer’s riddled brain doesn’t allow her to understand those things.  And it’s so very frustrating.  Some days she’s clear and understands but others, there is no talking to her.  There can be no explanations.  Walking out of the room leaving her in tears broke my heart but I could have stood by her bedside until midnight trying to explain to her that she can’t walk.

A small part of me (maybe the parent) can’t help but want to tell her “okay, get out of bed, I’ll wait” and then stand by as she falls out of bed… yes, that is a cruel thought and there is no way the hospital would allow it because of litigation reasons but we just get that frustrated.  I can’t imagine what it would actually be like to have dementia and I try incredibly hard to be patient and understanding but, and it’s been said before, dementia patients are like children.  But sometimes we have to let our children take the fall in order to learn and understand.  With a dementia patient you can’t do that because they don’t learn and understand.

Sometimes I can’t help but wonder if she’s given up, in part.  Perhaps she’s forgotten how to walk.  I know of another dementia patient who forgot how to walk.  Mechanically nothing is wrong, but they literally forgot how to do it.  But then a small part wonders if she’s just given up and if she’ll ever come home.

We’ve been in a holding pattern all weekend because physiotherapists don’t work weekends, doctors don’t work weekends, CCAC staff don’t work weekends.  So we’ll see what tomorrow will bring.  I think it would be best if they got her into long-term care right from the hospital.  A small part of me wishes she could at least see home once more but I think that would make it worse.  My mom was already told this week that she requires 24 hour care and that we need to list our top 5 nursing homes.  That’s not a good sign.

My mom got really sick this week.  Flu?  Bad cold? Not sure but she missed visiting for 3 days.  We picked up the visits but my aunt and uncle haven’t shown their face here yet.  It would be nice to have that extra pair of bodies to visit but they don’t deal with illness well.  My uncle actually commended my mom at Christmas for being able to deal with this day in and day out.  Gee thanks.  Not a lot of comfort in light of recent events.

We will see what tomorrow brings.  IF I get the opportunity, I will make more frequent (and shorter) posts to keep this updated.

In Hospital…

Mom found grandma on the floor in her kitchen yesterday afternoon.  Called 911 and they were whisked away.  Hours went by with no news and we finally got what we wanted this morning.  She has a really bad bladder infection with urinary retention and pneumonia.  They’re keeping her in until Sunday and giving her IV antibiotics.  Went to see her this morning and she knew who I was though my parents and brother were not so lucky when they arrived.  She only smiled at them but couldn’t name them.

Mom is out of town for the night so I’m not sure if this was good or bad timing.  My brother and I will be standing watch and going to see her.  My part-time job is interfering but so far I’m not booked too bad and I’m praying it stays that way to give me the chance to do what I need to do.

Here’s praying she does get through this.  She has no weight to lose.

Stay tuned…


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