A Wish List – Bereavement is not contagious

During our Grief Group Wednesday night, our facilitators gave us a copy of a Wish List that they had come across a few years ago and have been sharing with theirs groups.  Many of us found it really great and quite applicable.

Not all will apply to everyone, but many do apply.  For example – taking/getting them out.  This will help many, but not everyone.  Each individual is at a different stage in their grief and will know when they are ready to do certain things.

For anyone who has lost someone close, you may find it quite helpful also.  We wanted to share it with you.  The author is unknown.  There are some different versions out there, but this is the one we chose and like.

 

A WISH LIST

  • I wish you would not be afraid to speak my loved one’s name.  They lived and were important and I need to hear their name.

 

  • If I cry and get emotional if we talk about my loved one, I wish you knew that it isn’t be because you hurt me:  the fact that they died causes my tears.

 

  • You have allowed me to cry and I thank you.  Crying and emotional outbursts are healing.

 

  • I will have emotional highs and lows, ups and downs.  I wish you wouldn’t think that if I have a good cry my grief is all over, or that if I have a bad day I need psychiatric counseling.

 

  • Being Bereaved is not contagious, so I wish you wouldn’t stay away from me.

 

  • I wish you all the “crazy” grief reaction that I am having are in face very normal.  Depression, anger, fear, hopelessness and questioning of values and beliefs are to be expected following a death.

 

  • I wish you wouldn’t expect my grief to be over in 6 months.  The first few years are going to be exceedingly traumatic for me.  As with alcoholics, I will never be “cured” or a “formerly bereaved”, but forevermore be recovering from my bereavement.

 

  • I wish you understood the physical reaction to grief.  I may gain weight, lose weight, sleep all the time or not at all, develop a host of illnesses and be accident prone, all of which are related to my grief.

 

  • Our loved one’s birthday, the anniversary of their death and the holidays can be terrible times for us.  I wish you could tell that you are thinking of us and them on these days.  And if we get quiet and withdrawn, just know that are thinking about them and don’t try to coerce us into being cheerful.

 

  • I wish you wouldn’t offer to take me out for a drink, or to a party, this is just a temporary crutch and the only way I can get through this grief is to experience it.  I have to hurt before I can heal.

 

  • I wish you understood that grief changes people.  I am not the same person I was before my beloved died and I will never be that person again.  If you keep waiting for me to “get back to my old self” you will stay frustrated.  I am a new creature with new thoughts, dreams, aspirations, values and beliefs.  Please try to get to know this different me – I’m the one who’ll be here from now on.

Author Unknown

Bereavement - loss of child

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When what you prepared for isn’t what’s happened

I know it seems like forever since I’ve posted. Life has been busy with Patrick quite ill. He is on his 2nd admission since January and we are now heading into week 7 of this one. He is not looking at being able to go home till some time after the end of May.

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

How did you start your day? (updated)

First video blog! 🙂 They will get better I promise! 🙂

London Drop Zone 2012Click the ^above^ picture to watch this blog post!

Have you ever thought about what exactly you do in a day?

Have you ever thought about how easy your life is?   Easy you say? My life easy?

Take a moment and think about what you did this morning when you got up and started your day.

You got yourself out of bed – you went to the washroom – you brushed your teeth – you had a shower – you got dressed – you made coffee/tea – maybe you had time to read the paper or check emails before jumping into your car and heading to work, the gym, shopping or where ever.

Does any of this sound familiar at all? I’m positive some of it applies to many.

Now…imagine this…

You’re lying in bed awake, ready to get up.  But wait…you can’t!  You have to wait for someone to come help you get out of bed.

Perhaps you’d call out to someone to come help you…but wait…you’re not able to speak.  Maybe you use an augmentative communication device to speak for you, you might be able to use it to help you get someone.

Now…someone has arrived to help you get up.  Maybe they even need to help you get dressed.  Perhaps you need help using the washroom.  If you need help for these things, you’re going to need help in the shower as well, right?

What if you couldn’t eat anymore?  What if you could, but it wasn’t recommended you do, due to health risks it would cause if you did.  Imagine being fed through a tube in your nose or your stomach.  Not being able to taste food anymore!

Those a just a few thoughts for you to think about at the moment.  Stop and really think about it.  What if that was you?  How would you feel?

Now let’s see, based on the above questions, let’s surmise that you aren’t able to walk, so you would likely be in a wheelchair.  (Let’s make a little side note here that there are many types of disabilities and not all of them require use of a wheelchair or other assistive devices).  Let’s also assume that because you can’t eat orally, you have a g-tube with which you get your nutrition.

Did you walk to your car or to work or the gym today?   There are literally thousands of people who weren’t able to.  Have you ever thought about getting around in a wheelchair?   Think about some of the places you go and take a visual as to how accessible they are?  Are there ramps?  Automatic buttons for the doors?  That are in reach?  Are the doorways wide enough for your wheelchair?  Are the things you use everyday within reach for you?

Seems like a lot to think about so far doesn’t it?

On the other side of the coin so to speak, what if you were the one who was helping that person everyday?   Circumstances are different for everyone and every situation it’s true, but suppose you had to get someone else ready to for their day before you could get started with yours.  Oh wait, this is how you start your day.

What if you were the parent and this was your child?  There are thousands of families that do this everyday!  This is their life!

How would you cope/handle things?  Do you think you could?   Without complaining?

Imagine all the things you will have had to learn and the all the things you’ll continue to learn.  All the Doctors, therapists, nurses, teachers, suppliers of equipment and things your child needs.  All these people remember are multiples!! In other words, there are a number of doctors/specialists, there could be anywhere from 1-5 therapists, multiple nurses and teachers and a limited number of suppliers for your equipment and supplies needed.

Think about work.  Is your boss wonderful and patient enough to let you answer those calls from the school where you might be needed?  How about all the doctor’s appointments and tests/procedures your child may have?  What about the hospital stays?  Staying 24/7 at the hospital with your child because no one knows your child like you do!  No one there would understand your child’s communication either.  Who is the best advocate for your child?  YOU!!

watch the video for the rest….

Here is the link for Easter Seals Drop Zone 2013 🙂

http://my.e2rm.com/personalPage.aspx?registrationID=1810209&registrantPreview=1

Thank you so much!!

Reality – Let’s Dwell on the Now!

So I decided to write this while it was still fresh in my head.  I really should do that more often, but it all ends up being said in the end regardless, so it’s ok.

Today was a check-up appointment for Patrick with Nephrology.  This is the second time in a row I’ve come out of an appointment with information I didn’t have previously.  I am known to ask questions of the doctors and nurses, and they know I will continue to ask questions and talk to them till I am comfortable in my understanding and knowledge of whatever the issue is.  It looks as though I will need to start asking more detailed questions about reports, tests and scans.  I have also requested all clinic and hospital reports for the past year and all scans since 2005.

Let me start by saying that the update I’m about to give, may not sit well with many and I will emphasize repeatedly that we are/everyone is to dwell on the positive aspects of this information.

Without going into extreme details, I will begin with a bit of history that perhaps some don’t know or didn’t realize.  One of the ‘symptoms’ that typically goes with Patrick’s diagnosis of Meckel Syndrome, is polycystic kidneys.  This means that it is common for the kidneys to have and/or be covered in cysts.  The cysts get so bad that the kidneys end up having problems functioning and eventually shut down.  When Patrick was born, no cysts were detected or found.  A few years ago, a few started showing up on his ultra sounds.  There were only about 3 in total.  There had been no real issues with his kidney function…till about 4yrs ago.  It started to decrease.

In April of this year, we found out Patrick was in Stage 2 Chronic Kidney Disease and his kidney function had decreased to 60-65%.

Now, let’s jump to the present.

The appointment this week has brought some more information to light and also given us a bit of a reality check about this issue.  We’ve always known his kidneys were and were going to be an issue, but it’s always been tucked in the back of our minds as there hadn’t been any major issues and he was being managed well to look after them as best as possible to prolong them as much as possible.

Information this week has told us, Patrick’s kidney function is now 50%.  He also has more cysts on his kidneys.  The bigger Patrick gets, the harder it will be on his kidneys.

The Doctor told me that when his function gets to 30%, we will begin having talks about what will be the options for Patrick and what will be in his best interest.  A number of factors will come into play at that time, so it’s not something that can be discussed to much this early on.  The Doctor also mentioned that sometimes it is good to begin to discuss some of these things now, as it is generally more difficult in the ‘actual’ moment and our judgement can be ‘clouded’ sometimes in those types of situations.

They are managing him as best they can, as I mentioned, to prolong his kidney life as long as possible.  Some of the things they monitor are his phosphate and potassium levels, his blood pressure, his meds and a few other things.  Patrick’s ‘numbers/levels’ are good at this time under the circumstances, and that’s a great thing!! It means he’s being managed well!  Let’s keep that in mind!

Not to put a damper on things, or to sound morbid, but to a degree the reality of the situation has been brought a little closer to the front of our minds now.  The reason being, if his function continues to decrease at the rate it is now, we’ll be having these talks within 2 yrs.

But let’s try not to dwell on the future too much at this moment.  Patrick is a happy boy!  He loves school and being around his friends and family!  He loves to do crafts and bake!  He loves going for drives and music!  He’s an amazing young man!  He’s doing better and being looked after by the best people!  His numbers are good at this point as mentioned previously, so again, his health is being managed well at this time!

 

How can you smile not smile at this guy?

 

Minimize admissions – maximize quality of life

A quick update.  I’m sorry I won’t be going into it all right now, but I am just too tired and need to get to bed.  Patrick’s respite workers are finding it tiring when here as well.

Patrick is being admitted tomorrow morning to hospital.  A Shunt-o-gram is being done and the idea is that during this admission, the G-Tube and possibly the 24hr EEG will be done as well.  This admission will likely be approx 2 weeks, give or take a few days depending on how everything co-ordinates.

Trying to do as much as possible in an admission to prevent the back and forth between hospital and home.

A lot has gone on and been talked about and discussed yesterday and today and I will try to update when I have time while in hospital with Patrick.  I really need to go to bed now.  I still don’t have everything ready for tomorrow!

We welcome all thoughts, prayers, support and hugs and thank you for them as well.  Visitors are especially welcome to come see us.  Message/text/bbm or call to find out what room we are in.

Goodnight my friends, tomorrow is a long day, be in touch soon!

 

Are you ready to talk about it?

The talk.

The talk no one likes to discuss or have.

The talk no one ever seems to be ready for.

How can you prepare for something that makes so many people uncomfortable?

Let me again say, no one is expecting Patrick to not make it through surgery.  We’ve been told it’s rare that children die on the table.  This is still a conversation many people must have at some point or another.  It’s particularly difficult when it’s your own child.

Patrick’s father was up for the weekend to see him (for those who don’t know, we are divorced, he sees him fairly often) and we had a couple conversations regarding what the other thought regarding resuscitation.  Not an easy conversation.

What do you do?  What do you say?  Many thoughts and questions come to mind.

Some will say he has been through enough.  Some will say he’s always come through.  Some will want the chance to say good bye.  Some will ask would he still be Patrick after?

Some family members have shared their thoughts with us already.

How many of you would be able to make that choice for your child? Do you think you would be able to tell if your child is suffering or not?

Could you make the decision selflessly?  It’s difficult as a parent, because that’s not the way it’s supposed to be!  Your child is going to outlive YOU right!?

We haven’t come to a decision yet.  I don’t think either of us are ready yet to do so.  I want to speak to the Doctors once they have the plan and get their thoughts on everything.  I want to have as much information as possible about this before making that decision.

What we do know is that since Patrick’s last cranial vault expansion, his health has not gone back to was it was prior to that.

We are NOT looking at this and expecting a negative outcome!  We are NOT planning on saying goodbye!

We DO have to be prepared and accept the reality of the situation and make decisions in the best interest of Patrick.

How do you think you would/will cope?  What things would/will come to your mind?  How difficult do you think it would/will be?

We’d love to hear your thoughts/experiences.

 

 

 

 

Improving Quality of Life

Many of you are wondering how the meeting with supportive services went this morning.  Here is a bit of a run down of what the plan is and what’s happening.

 

Let me begin by telling you, it was decided this morning’s meeting would not cover any of the difficult palliative issues at this time.  Those talks will happen, but today the priority was pain management and quality of life concerns.

Patrick’s pain seems to be managed fairly well with the medication he’s on.  He’s taking Gabapentin and Valproic Acid.  He doesn’t complain of headaches as often as he had been, which is good.  Tylenol is being used when needed to help take the edge off at least.  It really doesn’t do much for him honestly and thankfully is not needed as often at the moment.

As for quality of life, fatigue is making Patrick’s not so good.  He is awake and alert for periods throughout the day, but they don’t last and he tires easily and quickly and falls asleep.

What is causing the fatigue?  We wish we knew.  The Doctors wish they knew.  Could it be the meds?  Possibly.  Could it be the increased pressure in his head? Sure.  Could it be the seizures?  Again, it’s a possibility.  The fact is, he has been like this before when seizures and medication weren’t in the picture.  Both the seizures and the meds won’t help it indeed.

It’s so difficult to write so much out and so that many will understand.  It’s easier to inform verbally, but I will do my best.  I have considered doing videos instead of writing for updates, I may still, we’ll see.

Fatigue is causing issue and concern with eating and drinking.  He’s so tired, that it’s taking 2-3 hours to get through meals and drinking.  Tiring, not only for him, but for the caregivers as well.  The decreased alertness and increased sleepiness while eating and drinking can become a serious health and safety issue for Patrick.  Not being awake enough to chew and swallow properly can cause him to cough and choke and potentially aspirate.  Chances of pneumonia increase with aspiration, something he can’t get.  We’ve been lucky thus far, but he does cough alot when trying to eat and stay awake enough.  He wants to eat, but it tires him so much.  It’s alot of work to co-ordinate chewing and swallowing, something many of us don’t realize or think about.

A consult for a feeding assessment is being done as well as a recommendation that Patrick have a G Tube put in.  The G Tube will not be to replace his eating, but to help.  He will still eat what he wants and can, but in a 20-30min time period.  Anything after that will be done by the G Tube.

By doing this, the hope is to improve his quality of life, even if just a bit more and hope that it preserves some of his energy and that maybe his awake/alert periods could possibly start to become longer.

A social worker is going to be asked to become involved as well.  As I am usually the one who looks for information and resources for most things I need to know, I’m so tired, I’ve not had the energy to do a whole lot.  As Lisa (support services person) told me this morning, she has no doubt how tired I am (you just have to look at me) and that I am doing a great job and being a great advocate, but it will be nice to have someone else involved who can advocate for me/us and do that extra stuff for me.  Looking for information and resources.  A little reluctantly, I agreed.  Social work is apparently going to get me more information on Kids Country Club (their website is down), a respite for children who are technology dependent and medically fragile.

I hope to hear from Neurology next week regarding the 24hr EEG.  My thought is now that with them deciding to put a G Tube in, it would make sense to co-ordinate the two since he will be in hospital 4-5 days with the G Tube.   Hopefully this will be done sooner than later, so this surgery can get done and he can start recovery and get better.

Lisa did make a point of saying that no one is thinking he will not make it.  The reality of it is though, this a very big, complex and complicated surgery and the risks are great.  Everyone needs to be prepared for ALL the possible outcomes.

I’m tired and can’t think of the rest at the moment, so I will sign off and update again later.

I did get a call this afternoon though from Neurosurgery Clinic saying they wanted a CT today/tonight or tomorrow for Patrick.  He’s having it 730am tomorrow morning.  I’m off to bed to get some sleep.

Goodnight my friends, thank you again everyone for your kind thoughts and prayers! HUGS!