Potential Discharge

I was reading some past blog posts and it has been a year since dad was discharged from a 3 week stay at the hospital.  One year later, he's been in the hospital since May and over the past few weeks we've been in discussion with the transitions workers at the hospital regarding his discharge to a care facility.

My mom and sister-in-law and dad had a meeting with Kelsey from transitions services at the hospital on the 1st and she said they anticipated dad being assessed at an SL4 level.  SL4 is Designated Supported Living Level 4 where the need for unscheduled personal assistance is frequent. There are 24 hour onsite Licensed Practical Nurses and Health Care Aids and an on-call Registered Nurse.  At the meeting she gave them a list of subsidized SL4 facilities and the next steps were for dad to have a formal assessment done while we checked out homes and gave them our top 3 choices.

Unfortunately there are no SL4 facilities in the town where they live and that's the only place dad wants to be.  He and my brother toured two facilities this week on Monday and Tuesday - one of which is about 20 minutes away and they both said it was very nice.  My brother spoke to transitions yesterday and gave them the names of their facility choices.


What to pray for... that the first care facility with an opening is the one dad wants and that dad continues to be cooperative with the health care team and moving into the care facility.

What I'm thankful for... my brother and sister-in-law and everything they do for dad.

No News is Good News

Dad is doing well but still in the hospital.   I haven't heard anything about a discharge date.  His family doctor went on stress leave so mom had to try and find a new doctor to take dad on as a patient.  Family doctors taking on new patients are hard to find and they can pretty much pick and choose who they decide to accept as patients.  She had an interview with one last week - with the doctor being the one doing the interviewing - and told me yesterday he agreed to take dad on.  Praise God!  With dad's history and current health issues I thought it would to be difficult to find someone so this is good news.

What to pray for... guidance and wisdom for the health care team that takes care of dad.

What I'm thankful for... the health of my children.

Robin Williams

Robin William's widow, Susan Schneider Williams wrote an article this past week for the Journal of the American Academy of Neurology.  I would actually call it a story more than an article.  It is very well written and although I don't know her, I'm proud of her for sharing their story.  Robin Williams was not diagnosed with LBD until after his death.  She talks of their journey with LBD and although I hate that my dad has this stupid disease, I'm glad that he was diagnosed before he dies.  Along with giving startling insight into LBD, it also talks of the amazing man that Robin Williams was.  I've included the link below.  

The Terrorist Inside My Husband's Brain

Update

Just a quick update.  Dad has pneumonia again and has been sleeping most of the time.  I'm not sure where things are at with the blood clot.  Will keep you posted.

Update

Dad has another blood clot and is on blood thinners again but seems to be doing okay.  Over the past few months doctors have been adjusting medication, removing some, adding and/or changing the dosage.  He said they have him on a new one that is really helping with his dreams.  We've been texting more again and have talked a couple of times this week.  He sounds really good, actually the best I've heard him sound since probably before he went back into the hospital in May.  Still forgets words and loses his train of thought but just sounds more like himself.   Still no talk of him being discharged.  He did say one of the meds he is on requires daily bloodwork though so I would think he will be in for a while still but who knows.  

What to pray for... continued trust in God's plan and for my newphew - he broke his collarbone yesterday so please pray for a speedy recovery.  

What I'm grateful for... I received a text from dad yesterday that was very uplifting and supportive and it made me feel like I had my dad back - reminded me of how things used to be and while it did make me a bit sad, I also see it as a gift amidst this stupid disease.  

Family Reunion

We are off to Edmonton this weekend for a family reunion on my dad's side.  Dad is still in the hospital and will not be there.  I have mixed emotions about this.  This is the first time in 23 years we have all been together and everyone will be there except him.  Being in the hospital made it an easy decision because he just isn't well enough to be there but I am relieved for my mom.  I know dad would love to see everyone, especially the kids, but it would be stressful to have him there.

Mom had a meeting with the doctors last week for an update on where dad is at health wise.  His doctor at the hospital said he is not ready to be discharged.  As far as I know no timeline for discharge for discussed, just that there will have to be another meeting to figure out what happens when he is ready for discharge.  He can't go home and this will be hard for him.

What to pray for... I have really been struggling with my depression and have not been in a very good place these last few weeks.  Pray also for peace of mind for my dad, especially over this weekend.

What I am grateful for... my friends.

Update(s)

 June 21th (ish) - My brother received a message from the doctor dad was admitted under.  Dad took a turn for the worse and had very low 02 levels and they couldn't get it to come back to normal levels.  They ran some tests to try and figure out what was going on.  Mom went to the hospital on the 22nd to see dad and talk to the doctor.  He had pneumonia and mom said he was very confused and couldn't remember the last 2 days.  There was discussion about moving him to the ICU but because dad has a DNR they decided to keep him where he was.  It was touch and go but he made it through the weekend and called on July 1st to say hello, sounded tired and it was a brief chat.  At that point they said he would be in the hospital for another month.

July 13th - Mom texted and said the nurses noticed fluid in dad's lungs again so he was back on IV's.  My brother and sister-in-law went up to see him but couldn't wake him.  Mom went up on the 14th and said he seemed better and they visited for about an hour.  Dad texted this morning and told me that the chest infection was back, I asked him if he was up for a chat but he was too tired.  

With everything going on I would think he will be there at least another month from now but I haven't heard anything definite.

What to pray for...  Trust in God's plan.  I walk almost every morning and that's when I do my praying, but I don't find myself praying for dad to get better because there is no better and I don't want him to suffer.  Lewy Body is stealing his life, it's stealing his mind and it's stealing his happiness... so every morning when I walk I just tell God I am trusting in His plan.

What I'm grateful for... my kids are happy and in a good place right now.

Long Story Short... and an update

When mom and dad were here my dad went through our bathroom and took some pills.  I noticed they were missing on the Sunday evening and asked him about it.  He told me where they were but things did not go well and he was very upset that my mom knew about it.

Dad is still in the hospital and not doing well.  He has been sending a few texts - which haven't been nice.  I asked him on Wednesday to not text me at the moment and that I wasn't angry or punishing him but that I needed a break and will continue to pray for him.

Thursday morning he sent one of my daughters a text that a bit on the darker side and my husband and I felt was not appropriate.  My husband talked to dad on Friday and told him it was okay for him to text with the kids but he needed to keep it light.  That night my daughter got another text from dad that was very upbeat and encouraging - I'm glad he sent that because she was upset about the earlier text.

What to pray for - grace for everyone involved, that the communication stays open between family
and for my girls.

What I'm thankful for - my husband and support from friends and family.

Update

Dad hasn't been doing too well these past few weeks.  This afternoon he called 911 on himself because he wanted to be admitted to the hospital.  As far as we know he is currently in emergency.  There are some contributing events preceding this and I'm hoping to find the mental energy to write about it at some point.

6:15pm - hospital called my mom and dad has been admitted.

Prayer requests... peace for my mom, brother and sister-in-law and that we can try to see God's presence in all of this stupid mess.

Life Sentence

My sister-in-law posted this on her Facebook status tonight:    

"Imprisonment in one's own rapidly shrinking brain is how a doctor described it to me. I wouldn't wish Dementia/Alzheimer's on my worst enemy. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are. Patients can eventually become bedridden, unable to move & unable to eat or drink. There will be people who will scroll by this message because Dementia/Alzheimer's has not touched them. They may not know what it's like to have a loved one who has led a battle against Dementia/Alzheimer's. For all the people I know, I ask a small favor. If you know someone who has battled with Dementia/Alzheimer's or is still struggling copy and paste to support victims & families affected by this cruel illness as there is no cure and there are no survivors! Hold your finger on the message to copy it, then paste it on your page. No tagging or sharing. Do this on behalf of all caregivers who love or care for someone with this disease.
Thank you."

I don't share things via my Facebook status and, well, I guess I don't really update my status at all.  I'm just not big into sharing mundane details of my everyday life on Facebook (no offense to those of you who are) but I thought I would update the blog cause it was nice of my sister-in-law to post that.  Dad hasn't been texting much and he's sounds off when we talk.  He says that they need to make more adjustments to his medication but he doesn't see the neurologist for a bit yet.  It's a fine line because he needs to sleep through the dreams but yet he needs to be able to function and not be falling all the time.  

It seems that the more time that passes since we visited after Christmas the better things seem to get in my life.  It's easier to distance myself from everything.  I don't know how I would live with it day to day like my mom, brother and sister-in-law do but then that's all they know.  Lewy Body Dementia is a part of their normal and while there are curve balls thrown into the mix as the disease progresses, they adjust, re-set and continue on.  So in saying that I suppose if I was living there I wouldn't be able to imagine it any other way but oh God I pray for you to be with them and give them strength because that has to be a really hard normal to live with sometimes.  

What to pray for... my mom will be going on a trip and dad will be staying with my brother and sis-in-law so prayers for everything to go smoothly while dad is there would be appreciated.  Grace, strength and patience. 

What I'm grateful for... my friends.  I don't know how I would get through day to day life without laughing at the most stupid of things. 

V-Day Update

Well I said I was going to make an effort to post at least monthly and it's halfway through February already so here we go!  Yea, and Happy Valentines Day and all that stuff too ;-)

Not much change with dad since we visited.  He had an appointment with her Neurologist this past week and mom said they are going to reduce the dosage one the one medication to see if it helps with his balance but yet still keeps him sleeping at night so he doesn't have the dreams.  She said they should know within a week or so if it is helping.  He has another appointment in 3 months.

Dad called last week and we had a nice chat.  He said he wanted me to know that even though he doesn't see my kids all the time that he is always thinking of them too and loves them very much.  I would have cried more if I wasn't at work.  In texts he is always telling me "make sure you tell the kids how much I love them" and always telling me he loves me.  When I tell him I love him he always says I love you more.

What to pray for.. the medication changes and that dad's balance gets better.  Continued prayers always for my mom, brother and sister-in-law as they deal with this on a day to day basis.

What I'm grateful for... other than his balance things sound like they are going pretty good at home with dad so that's a good thing.   I'm also happy that my kids are happy.  They are all in a pretty good space right now.

Update

It certainly feels like we've been home a lot longer than 11 days.  

Dad is still not doing well.  He's falling daily and his memory is not good.  He had a bad fall down the stairs last week.  Mom texted to let me know. She was out and he called her.  Got a big gash on his face and there was quite a bit of blood but nothing broken (other than his glasses).  She put a call into the doctor who saw him at the hospital to talk about his meds and what is going on.   

What to pray for... for my dad to not feel alone and strength for my mom.  

What I'm grateful for... my friends and the listening ears, prayers, emails, texts and non-texts.  Thank you.  

Thanks for reading.

My Bubble

We got home yesterday from our visit.  I have so many thoughts running through my head but there is a lot I can't write about.  It was much harder than I thought it was going to be.  It's been 5 months since we last saw everyone and dad is not good.  On the first night we saw him my sister-in-law said it was a good night for him and I did see worse throughout the week.  He is forgetful, his balance is off, he walks differently, his eyes look different, his smile is different.   The one thing that hasn't changed though, is 7 card blind and dad giving the kids money so everyone can play (and that makes me smile).  

Honestly, I just don't know where to start right now.  I thought I could get some thoughts out but I just can't.  What I do know is that home is my bubble and I don't want to leave it right now.   

What to pray for... peace for myself.  Peace and strength for my mom.  For dad to know and feel that God is with him.  

What I'm grateful for... safe travels, our ski day with the girls and my husband.