Thinking about grandma…

When we lose loved ones they are never far from our thoughts and our hearts at any time.  Sometimes we think of them more and sometimes we wish they were still here for advice or cooking help!

My mom had surgery two weeks ago and I think she wishes her mom was now here.  Sometimes I wish that as well.  It’s sad when we wish we could be surrounded by loved ones and they can’t be here physically.

I finally finished my first non-fiction book about hysterectomies and I always copied and pasted each of these blog entries into a Word document and they are sitting there, unedited for the time being.

I have been thinking about publishing it with, perhaps, some in between memories and thoughts, not necessarily in order, as a book.

Does anyone think it might be of value?

I always blogged in order to help others who are struggling with loved ones with dementia, perhaps it would be an additional resource for future families.

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The Finale

Hello Everyone…

It has been over a year since I wrote last.

The day after I wrote last, my grandmother passed away.  My mom, my uncle and I were there when she went.  We talked to each other and to her despite her essentially being comatose.

It was 11:25 when she stopped breathing and we called the staff into the room to confirm.

We spent time together that afternoon, the family gathering at my parents’ house.  My brothers and I were asked if we wanted to speak at her funeral.  One brother and I said yes.

I went home and started to write what I was going to say.  We went for the first visitation Friday evening and I suddenly wondered if I could do it.  I didn’t know, emotionally, whether I could stand up there and risk breaking down in front of everyone to say what I wanted to say.  My brother told me if I couldn’t, he would say it for me.

I thought about it all night.  The next day I was filled with hope that I could get through it.  If I broke off to shed a few tears, everyone would understand.  That’s what everyone said.

I was shocked by the number of people that came that afternoon.  I was grateful to some, but questioned others.  But the message was the same.  All these people had cared for my grandmother and were sorry to see her go.

My words were filled with my memories of her.  I shared most of the good but did manage to share some from the bad times as well.  I did have to stop once and then when I returned to my seat I cried quietly while my brother spoke his words and also broke down and at one point I thought I would have to be the strong one and go finish for him.

We spent time together, we shared stories together.  We missed her and had a cake for her on her birthday.  We missed her at Christmas.  We started a New Year without her and we mourned her more on the first anniversary of her death.

Grandma played a profound role in so many lives.  Many will never be grateful but her family will be forever and will miss her.

Goodbye Grandma.

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Quite some time…

It has been quite some time since I wrote last and not because I didn’t want to but because I wanted to have enough that it was worthy to speak!

Last time it was Christmas and everyone was worried about grandma and how she was going to react to dinner, four kids running around and the rest of us talking, loudly, sometimes.

She did well.  She sat and opened her gifts and there were very few issues.

Since then, she has continued to decline.  I have seen her on several occasions since then and it’s always been interesting.

Once more, in January, and the worst snowstorm we’d had in a while, grandma ended up going to emerg.  The home staff thought she was having a stroke.  She’d had difficulty eating and walking.  Mom texted me at work, then, eventually, picked me up.  “Here we go,” was all I could think.

Once in emerg, she was totally ignored! Talk about a let down! She was on a stretcher, in the hallway basically ignored considering the fact that she had come in for a stroke!  I was there until a little after 4:00 because my brother came in to see how everything was going.  He drove me back to work so I could get my car. My mom didn’t get home until about 8:00 I believe it was.  A doctor finally showed up, said that nothing on initial exam indicated a stroke but that he wanted her to have a CT done… the next morning.

So mom had to go, pick her up, take her down to the hospital, sit in emerg again and wait… at least it wasn’t quite as long.  So they went, she had the scan done and went back to emerg where they were told that she’d had a stroke and she’d had many before.

A new course of medications were prescribed and, so far, she hasn’t seemed to have any further problems.

We went one Sunday evening and my parents have become accustomed to taking their now single dog along to visit.  So we took grandma into the library where we were alone and we could close the doors and let puppy off her leash.

We talked to grandma, as best we could while puppy sniffed around the room, came back to make sure we were still there, let grandma pet her and then carried on… for 20 minutes.  That’s all it lasted!  She got up and she wandered to the door and she said that she wanted to see what was out there.  So my mom took her back to her room.  That was the end of that!

The last time I saw her was Easter Sunday.  We’d had our Easter dinner on Saturday to accommodate schedules and my mom was even more hesitant about having grandma because of the kids and her recent behaviour.

So she decided to bring her home on Sunday instead when it was just the five of us.  Much quieter for her.  Mom had signed her out for 3:00 however someone let her go to church which let out around 3:20.  They were back by 3:30.

My daughter and I, while we waited, sat out on the deck because, despite the ice storm we’d had three & two days before, it was all gone (including the tree in my parent’s backyard) and was a glorious 17 degrees (C).  That’s where they found us when they arrived.

Chairs were brought out of storage and there we sat.  I don’t know if she knew me at all… I never really get to know that.  She acts like she recognizes me but it ends there.

On the other hand, she knew my daughter but asked five times where she went to school.  She couldn’t place the school any of the times she was told and couldn’t remember the name of the school she went to either.

Not even an hour after she got there she got up and said she better get home.  Her parents would be looking for her.  Mom had to tell her that she was staying for supper.  She was concerned that her mother didn’t know this.

I had to pretend that I called and told them.  She was happy with that for a while and my mom got her through the cooking of food by bringing out an album she had put together of many of my grandmother’s (likely my great-grandmother’s) old photographs.

We made it to supper and through supper and mom sat her back down to finish the album.  Though it was only 6:00 and mom said she’d bring her back at 7:00 it was time to go.

That was the last time I’ve seen grandma, again.  My mom gets there as often as she can but it’s depressing for her too.  Grandma only seems to know who she is when my mom and dad go together, otherwise my mom is my grandma’s childhood friend.

She is also obsessed with the fact that her parents won’t come see her and she can’t seem to find a phone to call them.

I don’t think there is ever a dull moment with a dementia family member.  It’s always concerning though not knowing what’s going to happen next.

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Merry Christmas!

Well, it’s been a while, probably about as long as it’s been since I visited grandma last and wrote about it. 

My mom has been visiting during the day and that’s great because why not?  She has the time to go.  This Sunday, upon my arrival at the house, mom said she wanted to go see her and I jumped at the chance to go.  I explained that my two visits to date, both in the evening, were really not great experiences and that I’d love to go during the day before the sundowning happens.

Since my parents had to put down their Golden Retriever almost two weeks ago, I suggested taking along their little pug as pets are allowed, and encouraged.  Grandma did live in the house with both the dogs.

So off we went on the adventure!  She’s doing well though the visit left me feeling a bit Twilight Zone-ish! She knew me! Yay! And my mom & my daughter. She even knew my dad when he got there a bit later on asking where he came from & if he’d been there the whole time!  She didn’t, however, know the dog.

She also said she’d spoken to her brother & her mother. See what I mean?

When I said I’d see her Friday for Christmas she was delighted but asked if her mother knew. We all gave a resounding “yes!!”.

We’re bringing her home on Friday around 4:30, I believe, having dinner at 5:00 and opening gifts.  Hopefully that will keep her mind occupied but we have decided that when she says it’s time to go home, we will pause what we’re doing and home she will go.

Fingers crossed for a nice evening with her.

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Settling in…

I’ve only been to see grandma twice in the six weeks or so that she’s been in the home, the last time this past Tuesday evening and she was more settled than when I saw her the first time.  She didn’t cry when she saw us and she was sitting in the common area watching a movie with her room mate.  They are getting along well now despite rocky beginnings.

She sat me down next to her and we watched some of this movie which happened to be a Christmas movie mere days before Halloween but that’s okay.  It was cute and had dogs in it, one that could talk, so they were all finding it very amusing despite nobody (including staff) knowing the name of it!

This is a good thing and helps put the mind at ease.  She’s safe, she’s secure and she has staff there that know what they’re doing and can help her with anything.

My aunt and uncle finally came for a visit last weekend and went to see her.  She knew my uncle and they were there for quite a while.

I also got a chance to see my grandma’s room as we moved in a dresser for her clothes.  She has pictures of all of us labelled with names and who we are.  We’re making it more of her own place now.

On the other hand, my mom has been cleaning out her stuff.  She has sent some clothes to me that I just raise an eyebrow at! Some of it’s okay, mostly tops.  I’ve washed some of it but other stuff, like skirts, I will never wear for multiple reasons.  Her furniture has mostly gone already so it’s a bit of a shame really.

I am so glad that she got in and that she is where she is.  Yes, it’s a new chapter for all of us and I do hope that she gets some quality of life back before she’s taken from us.

So far, I think it’s pretty good!

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Readjustment…

On Friday September 18 my mom and dad moved grandma into her room in LTC.  It’s a beautiful facility and the staff are great.

My mom has been unwinding but having to sort out her entire house at the same time! A week after grandma moved out of the house we moved my brother back home except he’s going to take the basement apartment.  Get back on his feet, save some money.

I think mom is still adjusting.  She commented that she could actually come visit us Wednesday evening, except we are at the barn until at least 6:30 if not later.  She is readjusting to just being able to up and leave the house!

I finally went to see grandma Monday evening.  She cried when she saw my mom and said that she was just about to ask someone for a phone to call her mother to see if she could go home.  She wanted us to come to her room to pack her clothes.  I wanted to see her room but a sign caught my attention and I said “they’re having a sing-song!”  My mom was grateful that it was starting moments later and we got in line and followed to the library for singing.

But my daughter and I never said goodbye as we excused ourselves to find a bathroom and felt it might be best to just stay put.

My mom ended up leaving grandma in the bathroom because she was taking so long.  I had wanted to go for a short time (45 min-an hour) and we ended up being there an hour and a half I believe it was.

According to the staff though she is participating in activities, she’s eating well, so she’s not missing us.  We need to go some afternoon before the sundowning starts.

I won tickets to see Chris De Burgh this past Friday night and mom came with me.  I think she enjoyed herself.  He sings a song about memories and I think it brought a tear to her eye.  He started off by saying he’s been spending more time in nursing homes and that we should all revel in our parent’s and grandparent’s memories.  Unfortunately, for us, it’s too late.  They are all gone.  I was 14 when my great-grandmother died and I would never have thought to sit down with her and record her memories and thoughts.

Now it’s too late with grandma.  Even more unfortunately is that this really did come out of nowhere because my great-grandmother had no issues with her memory and neither did my great-uncles.  We don’t know about my grandfather as he died too young to know if he would have developed dementia or not.

So take the time with your older family members and record some of their history.  You never know when you might want it!

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A Bed!

CCAC finally got off their behinds and went to work!

The new home, the one we wanted, is admitting two residents per day, per unit.

CCAC called my mom last Wednesday, finally, and talked to her.  This was the first chance my mom had to tell them what has been happening, including having been slapped.

That seemed to light a fire!  Thursday they called back and finally the call came from the home on Friday… they have a bed for grandma, you haven’t toured the place yet, can you come this afternoon for that tour?  We’d like to meet her.  She even gave us the room number!

So we went for the tour, with grandma, who thought we were there for an open house.  She thought it was lovely and looked like a hotel.  She even asked if there were any university student who stayed there…  This is what I mean.

My mom, though, was, and is, devastated on one hand.  She is worried because she said she would look after her mom forever.  I pointed out that, really, she is looking after her mom forever!  It is in grandma’s best interests to be in a home.  They’ll look after her there.  They’ll see signs of bladder infections even before we can.  They will wash her everyday (much to her chagrin!) and she will get an actual bath once or twice a week!  Maybe she won’t get bladder infections anymore at all!

So it took a lot and grandma’s behaviour so far this weekend I think is helping to compound it… making my mom realize and see that this IS for the best.

And the place really is beautiful.  It’s decorated nicely.  They seem to have taken everything into consideration including a small area that families can book ahead so we could have Christmas there if we wanted to (though that’s probably already booked!).

She checks in on Friday morning.  I was debating taking the morning off to be there for my mom.  My dad said he would too so we have to discuss that.  It’s going to be hard for both of them and you can’t make grandma realize that she’s there because it’s for the best.  That she needs care that we can’t provide.

Yes, she will be missed sitting her chair but we can speak at normal volumes, we can discuss other things.

My daughter and I had some major devastation happen in our front yard.  Someone set fire to the dollar store in the plaza next door on Friday afternoon.  We had to get our pets and ourselves out for the night so we went to my parent’s house.  It was in the paper yesterday morning and she read all about it.  By last evening, when we saw it on the news, she said she knew nothing about it.  It’s so very unfortunate and sad.

Onto a new chapter…

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Something’s Gotta Give…

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.

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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!

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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!

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