Merry Christmas!

Another Christmas has come and gone.  It was a nice Christmas.  We spent Christmas eve with friends after church and then had supper with friends on Christmas day.  Talked to mom on Christmas day but not dad.  He has been very tired from the new medication and sleeping a lot.  As far as I know there haven't been any falls for a bit and things are going okay.  He sent me a picture of himself last week and he looks like he's been in a bar fight!  He walked into a door jam and they (they being mom and dad) think he broke his nose... combine that with the other cuts and bruises from his falls in the hospital and he's a mess.  Mom volunteers at the food bank and the weeks preceding Christmas get quite busy.  She was there for a few hours one day last week when dad decided to go for a walk and on his way home he fell and scraped himself up - mom has since told him he cannot go for walks without her.  There are a lot of hills where they live and it's quite easy for him to lose his balance going down them.  It sounds like mom is doing okay and she said it has been okay having him at home because behaviour has changed and he's not so angry but more weepy and scared.

We are going there to visit this week.  To be honest I am a bit apprehensive about the trip.  I hope dad's doing well so that the kids get some good time with him and have good memories of their Grandpa.  We are hoping to take the girls skiing one day so that would be fun.

What to pray for... our upcoming visit. As I was typing I got a text message from my sister-in-law. She said dad isn't doing very well at all right now.  Please pray for safe travels, that dad is better and for grace and patience all around (maybe a bit more so for me).

What I'm grateful for... our friends, our church, that my children are healthy and for Jesus' birth.

Thank you for reading.  Merry Christmas and Happy New Year everyone!

Tech Support

Dad was discharged yesterday and is home!

He was originally supposed to go home on a day/night pass Sunday but the doctor on call wasn't comfortable with the night pass so he went home Sunday afternoon on a 4 hour pass.  Mom spoke with his regular doctor Tuesday morning who said that dad being in the hospital was starting to become so upsetting that he felt it was time and better if dad was home.  Mom texted and said "that doctor is so nice ....gave me his personal phone number... Which he said he "never" gives out! Gave us both a hug when we left and I honest to God thought I saw a tear in his eye!!"  I asked her at what point she was supposed to use his phone number but she hasn't replied.

Other good news... dad's email and Netflix aren't working on his iPad and I'm his tech support so he's texting me again!  Since my last post I had continued to text him every day with no response.  Yesterday I asked him if it felt good to be home and I got a "yes".  Asked him a few more questions, got a few more one word responses and then today he texted about his email and Netflix.  Told him I would call but he said to call later tonight as he was just laying down for a sleep.  

What to pray for... that dad does okay at home and for my mom as she starts the caregiver role again.

What I'm grateful for... the doctor taking care of my dad in the hospital.  

Update

My mom went to the hospital today.  She spoke with the doctor and they started dad on a new medication to help with his nights.  One of the symptoms of Lewy Body is REM Sleep Behaviour Disorder which involves acting out dreams, sometimes violently.   Dad has been having bad nights and mom said he had a gash on his forehead and two cuts on his face.  The initial dose was too high so they are cutting it in half and depending on how it goes, he might go home on a weekend pass.  The visit itself went good, mom said dad is weepy and scared.  And that makes me so incredibly sad.  I had a not so good afternoon and evening.

Dad and I are still not on "texting terms", well, at least he's not.  I sent him a text a few nights ago just to say good night, tell him I love him and that I'm praying for him.  Yesterday I sent him a picture of my middle child with her first track medal and the events she competed in.  I heard something in a new TV show last week (Chicago Med) that resonated with me... that you need to look past the disease and remember that the person you love is still there.  That is what prompted me to text him.  So, keeping that in mind, I will text my dad even if he doesn't text me back.

What to pray for - my dad.

What I'm grateful for - as stupid as it sounds, the psychiatrist in Chicago Med.

2 posts in 4 days!

First of all, thank you to those of you who have emailed or texted.  Your kind words, support and prayers mean so much to me and I am very appreciative.

So here's where things are at as of today... dad is still in the hospital and we don't think it's going to be until Christmas.  Sigh.  My Uncle went up to visit dad on Thursday and took a picture of the board in his room and at that point it did say he was certified until December 25th at 10:40am.  Really?  A Christmas morning discharge?  That's just dumb (and I really wanted to say retarded but apparently I'm not supposed to say that anymore).  Mom went up Sunday to see him and said that has been taken off the board and that he is also allowed to sign himself out to go down for coffee for 30 minutes stretches.  The visit itself did not go well, dad is very resentful towards her and she left after 10 minutes.  He was texting her afterwards and said, "You want a war the war is on".  Mom is not confrontational with him but he is so bitter and she is the easiest target.  She always says that she's okay with him taking his anger out on her and that she can deal with him being angry at her but I would think it takes a toll after a while.  My heart hurts for her (and the fact that my heart is actually feeling something is a good thing too!).

The doctor called my mom today and basically said he knows dad tries to bluff/lie about things.  He asked if mom would be willing to take dad home again and she said yes but that this would be the last time.  He agreed and said he would support her at any time.  They are keeping him for now to get a psych assessment and they also want to get his night terrors/dreams under control before they discharge him.  She said he is going to call her next week again and touch base, see where things are at... so it sounds like dad will be in for another week for sure.   Once again, praise God that dad was admitted under the same doctor this time around.

What to pray for?  My mom, brother and sister-in-law - for patience and grace through the hospital visits and for my dad as well, that God would soften his heart and start to take away some of the anger and resentment.

What I'm grateful for... my husband and my friends.

Thanks for reading.

Update - Prayers Needed

My mom called me Wednesday morning.  She woke up to the RCMP banging on her door at 4:00 in the morning.  They had dad in the back of their police car. They had been receiving calls about a man causing a disturbance - walking up and down the street, yelling and hitting stop signs with a hockey stick.  Turns out it was my dad.  Mom told them he has Lewy Body Dementia and said they were very nice and understanding.  They brought him into the house - mom went upstairs and by the time she came down he was gone again.  She looked up and down the street and couldn't see him so she called 911.  Within minutes they were at the door because they were getting disturbance complaints again - she told them he was gone again and that she had just called 911.  So they went out looking and finally found him laying in a snowbank around 6:30am.  Said the only reason they found him was because they heard his cell phone go off.  Dad was being less than cooperative and they were unable to restrain him so they called in EMS who sedated him and brought him to the hospital.  He spent the day there (sedated as he kept trying to leave) and was admitted.  He has since been certified by the doctor (which means he has to stay there) and when I spoke to the nurse yesterday she said he is not allowed to leave the floor without a family member and would be there until at least Christmas.  I would rather hear that from the doctor and just hope that it's true.  My mind keeps going back to the last time this happened when we were told he was not going to be discharged and he was.

The God moments... I texted my dad around 6:30 and I believe it was my incoming texts they heard when they found him.  He was also admitted under the same doctor who was overseeing him 2 1/2 years ago!  I had said to mom when she called, "It's too bad he couldn't get the same doctor as last time." God is always erasing doubt and I know that whatever happens, He is walking with us through this journey.

Wednesday was a bad day for me - I cried like I haven't cried in a long time... which resulted in a horrendous headache and I ended up staying home for the day.  I spent the morning listening to worship music, reading my bible and texting with my sister-in-law.  She was honest with me about how my dad has been doing over the past few months.  Her text read, "He hasn't been in a good place for a long time.  Good days are still bad days.  It's daily,  noticeable to strangers. Eyes closed leaning against the boards at hockey, giggling & smiling at the floor, getting lost in crowds, wandering on his own when he clearly shouldn't be.  Things are developing & changing all the time. This is a roller-coaster & somehow we have learned to tolerate more & more."  What to say?  This is the most information I've gotten about dad in months.  I asked her if she would be my source of information through the next little while and she said yes, although she may paint pictures I don't want to hear and she would be brutally honest with me.  I told her I want brutal honesty.  I am very grateful she is a part of our family.

Where things are at:  Dad texted me Wednesday night like everything was fine.  Said he figured mom was mad and that he was feeling fine.  "Lewy and dreams.  Oh well.  Glad everyone understand."  Seriously???  I told him it wasn't just a dream and if his dreams start taking him out of the house in the middle of the night then that's a pretty serious problem.  He said "enough",  I said good night and I haven't heard from him since.

So... what to pray for?  That God will give the doctor's overseeing my dad discernment.  Peace for my brother as he visits dad and strength for everyone involved.

What I'm grateful for... God.

The Elephant on Facebook

This was Dad's post on Facebook yesterday:

"Another visit with my mom. Some say it is my dreams but I'm not to sure about that anymore. No matter what this kind of visit during the night I can live with. Dam I sure miss you mom and I really like your night time visits. They do not scare me, they make me so very happy.  Mom always asks about my brothers. She tells me how beautiful her Great Grandkids are and how proud she is of our kids. She wishes she could be with us but being with Dad is all she has wanted for so many years. I have never talked about this before but you need to no how mom is doing." (just a side note that he did tag his brothers in the post as well - I took their names out for privacy).  

I commented on his post, said I thought that was awesome and thanked him for sharing.  To be honest, I didn't know if I should comment on it at all - it's kind of like when someone gets cancer and you don't know what to say or if you should say anything.  The illness is the elephant in the room... or on your Facebook feed.  And it's just as easy to hide someone on Facebook as it is to avoid them in life.  

But then dad texted me later in the day quite angry that nobody had responded to his post.  He said he was disappointed because the people that mean so much to him hadn't even "liked" it.   We texted back and forth a few times and I also got the sense for the first time that he is angry at being sick.  A death sentence he said.  It makes me so very sad that my dad has to live knowing what is happening to him and how it's going to end.  

So what's a person to do?  I myself have hid many people on Facebook... and none of them are sick and dying.  I know dad puts some out there stuff on Facebook and it can get annoying at times and that hide button is just so tempting.  Really, it would only take a few seconds to drop down and click on it... the same amount of time to click the "like" button... and only a few seconds longer to make a quick comment.   What do you say?  Honestly, I don't know.  But I also never would have realized how important it was to my dad to have someone comment on his post. 

What you can pray for... that my dad's hallucinations continue to include his mom and are not bad (he has ones that he won't talk about).   

What am I thankful for?  My text conversations with my dad cause when he is texting, it's generally a sign that he's doing better.  

Wedges

I feel like dad's illness is driving a wedge between mine and my mom's relationship. It makes me sad because for some reason she just can't open up (and I think, in re-reading that sentence I just had a realization about why I need to process in my head before I blog it). Two years ago when Dad went through a big decline and was in the hospital it was very stressful - and being far away almost made it worse I couldn't do anything other than make phone calls. Mom has admitted that she doesn't share a lot because she saw how stressful was for me and doesn't want to burden me. I have told her that it is worse for me not know how dad doing because makes me feel like I'm left in the dark. Dad is not doing well right now from what I can gather. His texts are scattered and mixed up - he sounds like Yoda, which I mean in an endearing way because you really do have to find humour or else you will go mad.  We talked the other day and he wanted to make sure how much loves me an the kids - and to make sure that I tell them that cause if things keep going the way they are he doesn't know where he'll be.  I cried when we got off the phone but reigned it in because if I think too hard about it, about the fact that dad is dying, that he is still aware of what is happening to him and what will happen to his mind and body... if I think too hard about that I think my chest is going to explode and I won't be able to stop.

Balance - Physical and Mental

Yesterday was my husband and mine's anniversary and, I just heard on the radio yesterday morning that September 19 is also National Talk Like a Pirate Day.  I was out shopping with my middle child to get her first pair of track spikes yesterday and we did not hear one person talking like a pirate... but she was very excited to get her first pair of spikes :-)

My mom phoned tonight to say Happy Anniversary and when I asked how dad was doing she said not good.  She said she definitely notices a decline and the bad days are becoming more common.  His balance is not good and he has fallen 5 out of the 7 days this past week.  I asked mom to keep me updated on how dad is doing... she said she just doesn't want to worry me or stress me out and thought that my sister-in-law and I talked about things...  which we do, just not an awful lot about dad.  I have been trying to text with my brother more to keep in touch with him but he's not really the detail type and isn't really forthcoming with any information.  In saying that, I do know that he's not doing anything deliberately, he's just never been very chatty about stuff.   

Mom and dad have been down the past two Thanksgivings but she said that they can't come this year.  I told my husband the other day I wasn't sure if dad would be able to come here again.  I wish we were closer so that we could spend more time with him when he's good.  It makes me sad that my kids don't have any grandparents in the same city.  Mom and dad go to all of my nephew's practices, games and tournaments and I'd be lying if I said it didn't bother me.  It's nobody's fault but I get angry.  I get angry and I get jealous.  I love it here.  Our story began here 17 years ago when we got married and there have been so many chapters added since then.  Our friends, our Church, my husband's business is established here, my job and the kids are rooted here.  Maybe not so much our youngest... but the girls, my oldest in grade 10 is finally coming into her own and it would break her to leave our life here.  Our roots are deeply planted here and I can't imagine living anywhere but here.  

What to pray for?  My mom as she cares for my dad.  For patience and grace and that she can find some peace for herself in this stupid disease that controls both of their lives.  For my dad and his health, his balance - that he doesn't fall down the stairs at home and seriously hurt himself.  

What am I grateful for?  I am grateful for today.  For the first time in a very long time I actually felt happy and content this afternoon and it felt so very good.  Praise God for helping me to slowly take down the walls around my heart.  

Thank you for reading.  

The Title-less Entry

Whenever I sit down to write a blog entry I end up staring at the "Post title" for at least 5 minutes.  Usually I end up starting the post and at some point just fill in the blank with a title.  I sometimes feel that it should be this insightful title that will inspire one and all to read... then send them on their way inspired and ready to face the world.  Or maybe at least one person :-)


Dad has had ups and downs over the past few months.  I don't hear a lot on my end and I'm sure there are a lot of moments I'm not aware of but there have been some texts and facebook posts that are upsetting.  I've noticed his memory getting worse, losing train of thought mid sentence or just not remembering what something is called.  He can get very confused and at one point didn't remember my mom had gone to Radium.  I talked to him on the phone, helped him remember where she was and told him I thought he should stay in the house and not go out.  2 days later I got a text from him telling me mom was home and she had been in Radium.  We have had some good visits though and in June we were all able to get together for a supper to celebrate my mom's 65th birthday... and Dad's too as he and mom share the same birthday - he turned 64.

As I re-read that last paragraph I feel the need to address something I said.  When I say I don't hear a lot of my end I don't intend it to sound mean.  To be be honest I'm not quite sure how it makes me feel that I don't hear a lot on my end.  I can't say that it makes me sad or angry or feel left out.  There is a selfish part of me that is just fine being 6 1/2 hours away and living my life.  It's easy to go about my life not hearing the struggles or bad moments and not having to deal with any of it.  And maybe I'm being too hard on myself, maybe it's not selfish and is a normal reaction but I'm just willing to admit out loud that I sometimes feel relieved that I don't have to deal with all the bad crap.  I guess what makes it hard though is because I don't know how things are going, how Dad is or has been doing is that it is very easy for me to sit here 6 1/2 hours away and judge my Mom.  I hear that she has gone to visit her friends and get angry because I don't think Dad should be left alone... and I did talk to her about this - those of you who know me know that I'm fairly open about how I feel.  She said that she doesn't want to stress me out, that she saw how hard it was the 2 summers ago when Dad was in the hospital and everything was so bad and she doesn't want me to have to deal with that again.  I can appreciate that but it still makes it hard - though not harder than having to live with Lewy Body on a daily basis.

What to pray for:  My mom in her role as a caregiver.

Catch Up

March... April... May... and we're halfway through June.   The kid's sports have been keeping us crazy busy but things are starting to wind down.   One week of school left, ball hockey is done tomorrow and track next week.   Big news in our house is my oldest daughter starts drivers ed training on the 29th!  Hard to believe that she could have her learner's license a month from now. 

Mom and Dad came here for Easter the first weekend in April.  The visit went well and Dad was doing pretty good.  It was especially nice to see him with Jeremy (who is 8 now).  Grandpa taught him how to play quarter football and they spent a lot of time playing and making bets.  After they left Jeremy changed his name on his iPod and called himself "the master of quarter football".   Every time they come here I think it's going to be the last time he's able to travel here but praise God we've had 3 visits over the past few years!   I am just so grateful the kids are getting to spend some time with him while he's still good.  The older they get the more they will be able to remember their Grandpa.

Generally I find when Dad stops texting, things are not going good.  He was really struggling in May and sending random texts about how much he loves us and to make sure we tell the kids how much he loves them.   He was on and off Facebook and at one point had a disturbing post talking about suicide.  We went to visit at the end of May and he was doing fantastic... even managing an almost 2 hour geocaching hike with the whole family on the Saturday.  It's definitely an up and down journey and I know that we don't come close to experiencing what the downs are truly like cause we are so far away. 

What to pray for... my mom, brother and sister-in-law.  They deal with this on a daily basis and need to feel God's presence.  Also please continue to pray for my Dad's depression. 

6 1/2 hours

We are back from Walt Disney World and I had a few good talks over the past week.  One with my sister in law (who lives in Cochrane) and one with my mom.  Generally speaking, my mom hasn't been talking a lot about how things are with dad (I get most info from my sister in law) but mom did share with me on Sunday.  Dad has been going downhill since October.  The main thing I notice when I talk with him is his memory - you tell him something and five minutes later he's forgotten.   Mom said behavior wise he gets angry, stubborn.  She took a trip to Mexico and he does do worse when she's not there and she said she won't be able to do that again.  They went to visit friends in another city and it really threw him off.  I asked her if she thought they'd be able to come here for a visit again and she thought yes, but that plans could change the morning of.  I think about my kids more than myself.  They don't get to see Grandpa very often and when we do, it's not guaranteed to be the Grandpa they know.   Dad has a hard time with depression as well so if you could keep him in your prayers specifically for that I would appreciate it. 

One more thing...

If I haven't posted since March of last year then you all don't know that dad is no longer in the care home and is back at home again with my mom.  He was doing so extremely well - like the best in over 2 years - that mom wanted to give him another chance to be at home and enjoy being home while he was doing so well.  There have definitely been ups and downs and I know my mom doesn't share all the downs but he's home for now.  The care home put dad on the bottom of the wait list and every time his name gets to the top they phone mom, see how things are going and if he needs a room... if mom says it's okay then they just put his name back down to the bottom of the list again. Praying things continue on the way they have been and for strength for my mom as she cares for dad at home. 

2015

Crazy how when things are going good you don't feel the need to update anything.  So, things have been okay.  To be honest being 6 1/2 hours away makes it so easy to detach myself from anything that is going on.  I'm not even gonna try to go back and update over the past 9 months.  I am sorry that I didn't even take the time to blog at least on a monthly basis and will be doing my best to do that this year!  Talked to dad today and he sounded good - him and my hubby had a 40 minute conversation before I got home and he handed off the phone to me.  I actually haven't talked to my dad very much recently - we tend to text more than talk.  I noticed his memory loss - couldn't recall certain words or remember what he was going to tell me.  It's hard because I don't want to finish his sentences for him (when I'm pretty sure I know what he's going go say) but yet it is so heart breaking to listen to him to remember what he was going to say.  He knows his memory is going and that makes it hard.  He sent me a text a few weeks back telling me how much he loved me and to remember to tell the kids he loved them too.  And then he said, "I'm sorry I've gone stupid."  I was at work... and it brought me to tears.  I gotta say though, dad has become quite honest and blunt about most things and pretty much says exactly what is on his mind... which can sometimes be quite funny.  Blessings and curses right?

Started watching a new show on Netflix called "Boss" starring Kelsey Grammar.  He's the main reason I thought I'd watch the first few episodes, what I didn't realize is that he's the mayor of a city and the very first scene of the first episode is his neurologist telling him he has Lewy Body Dymentia.  The bad news is I've only made it through 3 episodes cause it is a very slow moving show.  Nowhere close to Jack Bauer and 24 - whipped through 8 seasons of that show in a 3 month time frame!  Either way, if you're interested in understanding what LBD is like, watch the first bit of the first episode.  They describe it perfectly.

My middle daughter (she's 12) and I had a sad conversation about dad dying yesterday.  Oh how hard it is to lose a grandparent.  I told her it is very hard but she's got one thing I didn't have when I lost my grandparents... and that one thing is God.  And God is there for us all the time.  Prayers are always appreciated and thank you for reading.  Happy New Year and blessings to you and your families.