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Today is mom's birthday... 
Started by CDP
17 Apr 2020, 10:10 PM

My mom died 6 months, 5 days ago.  She died <suddenly> from a rare disease, Creutzfeldt-Jakob Disease.  Symptom onset to passing took 8 weeks. She was healthy. She was 61.  It is a disgusting and horrific disease. My sister and I stayed with her 24-7 from the moment she was admitted to hospital until she took her dying breath.  17 days in hospital. To watch her painfully die was traumatic. We felt woefully under-supported as she progressed with the disease. Here, 188 days later, it still feels so unreal, so raw and it has been an extraordinarily challenging time.

Losing mom was tough enough.  As I stated, she was healthy (running circles around her grandkids, working 3 jobs, gardening, painting, etc) and 8 weeks later gone.  She left no will, had some significant financial difficulties needing immediate attention and my brother has really struggled (mental health, threatening, aggressive behaviour), magnifying the difficulty of it all.  My parents are long divorced. Being the oldest child, I have taken on all of the responsibility - funeral, sorting out immediate and pressing financial issues (mom's property was about to be seized), conversing with medical staff regarding mom's care, improvements and recommendations (since it is so very rare), preparing to converse with medical surveillance to document her progression and health history, navigating legal to obtain the authority to manage mom's estate (still in progress), managing my brother and the damn list just goes on.  I am so tired. I feel so broken.

For the last 6 months, I have been rushing around problem-solving and putting out fire after fire.  It feels like I haven’t even begun to really grieve for my mom. Today is her birthday. It is also my daughter’s birthday.  I am pretty good at masking, putting on a smile and navigating work and life. Yesterday and today have proven to be more difficult.  Yesterday, I broke down and cried like I never have before. I sat on our back deck and cried and cried. I figured I’d take deep breaths and return to watching a movie with husband and daughter.  I couldn’t do it. I moved to the bathroom and sat on the floor and sobbed and sobbed. I don’t even know for how long.

I’d be remiss if I didn’t acknowledge the immense support I’ve received from my family doctor and the therapist she recommended in her office.  I don’t know how I might have navigated this without these two. I am so very grateful.

Today is so hard.  I am trying to be joyful for my daughter’s 11th birthday.  ...paint a happy face. But, it really hurts to not have my mom alive today.  Reality is starting to seep in. Mom and I had a challenging relationship. So, grieving for the loss of my mom is compounded by grieving for the relationship we weren’t able to build and never will.  I just quite simply miss my mom. I am typically a very organized person, and remain so, but am feeling overwhelmed with estate and family struggles.

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18 Apr 2020, 5:11 PM

Dear CDP
Grief and sadness are so big and overwhelming aren't they. They take over our world especially when it gets complicated - with unresolved issues of finance and relationship. 

In an article on this website Grief  Fred says, "....the nature of relationship with the person who has died is a key variable (in the way we grieve) We may spend a great deal of energy questioning our role in the relationship or have regrets about what has happened. ...you may not only be grieving the loss of the person who has died...but also the loss of the opportutnity or hope that things would have changed or be resolved. It is like a double loss.... Sudden and unexpected death usually adds a layer of trauma. This kind of death may prevent us from doing or saying the things that are important." 

Anniversaries, especially first anniversaries after the death of someone we love, can be so difficult. I imagine when your daughter was born on your mom's birthday - that was such a happy day. My nephew and great nephew were both born on my birthday and that has made me feel so happy. Hard then when that birthday is another reminder of your loss. 

Was there a way to honour your mom yesterday? Perhaps in your time alone in the bathroom you did that very thing. You honoured her with your tears and sadness. 

Thinking of you today CDP


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Reply by CDP
19 Apr 2020, 3:59 AM

I did try to do a couple things to honour my mom.  Each and every Saturday I take to social media to raise awareness about CJD.  I've put together photo collages entitled "The face of CJD", infographics and more.  For mom's birthday, I found a lovely prairie photo and incorporated a photo of mom (a collage I designed using all the photos I have of mom to make a photo of mom).  I then scrolled the words across the image...

"Happy birthday dear mama.  I feel your absence most today... enduring your birthday without you."

On the right fringe of that image, i placed 3 additional images.  The top image is of my mom and daughter digging into birthday cake together, when my daughter was very young, and one of the few times mom made it here to visit.  The second image is simply a cake with "Happy birthday mom" written in the middle with icing.  The third and final image is that of my mom and her dad sitting on a fallen tree together in black and white.  Mom was about 13, I would guess.  My sister and I foudn this old image in mom's photo albums when putting together a photo collage for mom's celebration of life in October.  When I returned home, I found a local photo editor that did a great job of cleaning up and sharpening the image. 

I donated money to Alzheimers in mom's memory.  While she did not have Alzheimer's, in Canada this is one organization underwhich CJD falls.  There is a research team at the U of A as well, but I wasn't organized quickly enough to send the donation there.

Lastly, my daughter and I love attending the Calgary zoo.  We are members.  On a few occassions, mom accompanied us to the zoo.  So, given the current pandemic struggles many businesses are facing, we made a donation to the Calgary zoo in memory of mom.

Today, I tried to continue to honour mom.  Mom was always an avid gardener (amung so many other talents); green thumb!  I try very hard to have a garden in Calgary's challenging climate and environment.  I have a relatively large garden space in my back yard (though quite small to our farm standards!!) and have a couple garden plots at the local community garden.  I had started cucubmers and peppers already (my tomatoes died!).  So, today I started (more) tomatoes, pumpkin, watermelon and squash.

The day prior to mom and my daughter's birthday was my birthday.  I received a self-watering planter.  Tomorrow, I plan to continue with my start to spring gardening and will no doubt keep mom on the brain the entire time. 

I desperately miss my mama.

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23 Apr 2020, 7:52 PM

Dear CDP
What beautiful tributes to your mom. Thank you for sharing. 

Sometimes reading the stories of others who have similar experiences can help along the road. Lilbear started Will I ever really get my mojo back  in 2013. 

What did you plant?

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Reply by CDP
04 May 2020, 2:56 PM

Thank you for the suggestion to read through other posts.

I continued to plant plenty of vegetables and flowers.  I will have an abundance - good opportunity to share, I hope.  Everything is indoors for now.  Not out of risk for frost for a couple more weeks, at least.  Though the weather has been tempting of late.  Enough so that I've moved my work (laptop etc) outside most days.  It's raining today.

Gardening has become tough the last week or so... It is usually my happy space, but I'm finding it difficult as it reminds me so much of mom.  Too much going on right now...  Still battling estate (no will - working through the courts, sorting out finances, finalizing grave markers and the list is neverending), my brother is being a signficant challenge (mental health - locked up in mom's home refusing entrance and to leave) and I just lost my teaching position for the fall.  It's very overwhelming.  The last 7 -8 months have just been a continuous battle.  Sure could use some rest, some positive stuff and ... well, I don't know exactly.  Some relief.

Spinning... scattered... tired.
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Reply by eKIM
26 Jun 2020, 1:39 AM

Hi CDP.  I read your posting and it reminded me of my own struggles when my mother passed away many years ago and my sister passed away last year.


I still reflect on the “unresolved issues” that occurred with my mother and my sister when they were alive.  It can be a lifetime challenge, but it doesn’t have to remain negative.  Love and forgiveness of others and ourselves is a wonderful exercise in personal growth.  Even through tragedy, we can become finer human beings.  I have been working on, and I continue to work on this wondrous dynamic.


I see several very positive steps, CDP that act as markers on your grief journey.  First is the fact that you have reached out for professional help.  These professionals are highly trained and know what they are doing.  If you find a good one and you feel comfortable with them, stick with them for as long as you need to.


Another thing that is positive is that you are telling and sharing your story here on VirtuaHospice.  While there are professional people here as well. However many people here on Virtual Hospice are people who are on their own grief journey. 


Even though they may not have the professional credentials, they have life experiences that have led them to a place where they have found a way to lighten their own burden by helping others lighten theirs.  Don’t ask me how this works, but it seems to work, at least in my experience.


Telling one’s story can be a cathartic experience.  We somehow feel a wee bit better after unburdening our souls through the spoke or written word.  Also, when we feel the compassionate care of others who are on their own journey, it buoys our spirits by reminding us that there are good and kind people in this world.  And that we are not alone.


The “good” cry that you experienced was (I believe) a very necessary part of your grief journey.  Don’t be surprised if it occurs again and again.  Experts tell us that keeping one’s feelings bottled up can have harmful emotional, psychological and even physical consequences.  So you did well in “letting it flow”. 


Keep checking back on this site from time to time, CDP.  No one can “fix” things but we can be a companion for a while on this journey that you are on.


In the very best sense of the words, I wish you Love, Joy, Peace and Patience.


- Ekim

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26 Aug 2020, 3:31 AM

It's been a few months since we chatted CDP - I hope life has settled for you a little bit. So many losses - your mom, your work, your happy space. Along with responsibilities for the legal work, your brother's welfare and day to day living. How are you doing? Can we help?

A new member JustineS started Grief in the early days this evening. Her mom died August 6. My husband used to sing an old song, the first lines being, 'Grief is a knot that is hard to untie.'  The words come to my mind often when I think of loss and grief. 

Take care both of you,
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Reply by CDP
08 Sep 2020, 9:01 PM


In the thick of things still...  I spent 6 weeks this summer with my sister cleaning and fixing mom's house & farm.  Accomplished.  Managed to sell the farm, as well.

As things get done and life slows down, I do find it harder and harder.  I tend to thrive on being busy, but have been so frantically busy (14 hour days for 6 weeks), I am compelled to rest.  My mind doesn't oblige.  Now, I think, the grief is really setting in.  Putting out fires for the last year and now as I slow, it becomes so much more real mom is really gone.  You'd think weeks of being in her home, without her, would hasten that reality.  I did wake each morning hoping all had been a terrible nightmare, only to realize as I entered her home, it was too quiet and she had infact needlessly suffered and is gone.

While I still have my amazing doctor (and I tell you she is absolutely fantastic!!), I no longer have the counsellor I was seeing, and haven't had anyone since June.  My doctor moved clinics and this counsellor does not serve her new clinic.  I'm on a wait list...  October, I was told.

Thanks for checking in.  It is beneficial to write...
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Reply by eKIM
09 Sep 2020, 3:25 PM

It’s nice to hear from you CP.  Even though you don't have your counsellor anymore, I hope that we – here at virtualhospice.ca - can be a comfort to you.

I would imagine that accomplishing all the work at the farm must have been emotionally difficult.  But at the same time, I hope you feel a sense of accomplishment and that you are proud of yourself.

“Keeping busy” is a grief coping mechanism that many people use, but some people over-use it to the detriment of their health. 

I hope that you are able to slow down a bit and recuperate.  Your family needs you – healthy.   

It’s interesting how time and generations cause us to see life differently.  In my case, I had a great mom but my dad, well – “not so much”. 

When I got married and had children, I realized that our parents can teach us what to do – sure.  But they also provide us with valuable lessons in what not to do.

Through the example of my Mom, I have become a very loving, dedicated parent – at least that’s what my kids tell me, anyway.  Lol

Through the example of my dad, I have realized that alcohol and infidelity can ruin everything.  Thank God I have been able to avoid both.

I didn’t mean to make this posting “all about me”.  I just wanted to share with you how through examples (good and bad), my parents have helped me become the best “me I can be”.

My daughters are all grown up.  Now it’s grandkids for me to fuss over. 

Your 11-year-old daughter is lucky to have you as such a kind, tender and loving mom.

She is learning much about love, observing how much you love your mother. 

How you successfully (and you will) pull through will be an important life-lesson for her.

Your love and dedication in raising her will be a great honour and dedication, and one of the sweetest things that you can ever do for your mom. 

She’s looking down, smiling – even at me, this perfect stranger – saying, “Thanks for reaching out to my baby, eKim.  I was talking to your mom over on Cloud 9 and she told me what a good boy you are.”  My mom is a real chatterbox.  She’ll talk to anyone, anytime, anywhere – even on the “other side”.

- Love, joy, peace and hope.

- eKim

Ps, Yes, I did tear up writing this.  It always happens when mom taps me on the shoulder like this.

Pps  You said, “It’s beautiful to write.”  Yes, it is CP. 

It is cathartic

Everyone needs healing of some sort.  All of us.

It is self-edifying. 

Through the laying out of our own words, we learn things about ourselves that we “knew” but somehow we “forgot that we knew”.  It is amazing how far this hidden self-knowledge can bring us along our path of healing. 

Sometimes we think that all the answers lie outside of us.  Perhaps we would do well to remember the message given to Dorothy in the Wizard of Oz,  “You had the power all along, my dear,”

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Reply by CDP
09 Oct 2020, 5:08 PM

Quickly approaches the 1 year anniversary of my mom's death, Monday, October 12, 2020.  I am not certain which is worse, the reality or the nightmares.  Since mom's illness was nothing short of horrific, the last few weeks before her death were met with significant suffering.  I cannot escape reliving these days of terror as we lost mom bit by bit to hallucinations, violent outbursts and needless suffering.  My sister and I did all we could and more to try to engage nursing staff to adminiser timely medication, keep mom calm and comfortable.  Ultimately, we failed.  There's a delicate balance between squeaky wheel and outright annoying.  Perhaps we should have been more annoying; afterall, we were mom's only voice, her only advocate.  There are so many things I could have an should have done differenty in those days preceeding her death.  There are so many things I should have done differently as we lived our lives; bad choices, detrimental decisions, stubborness and fear. All regrets.  How can I possibly forgive myself when I see so much wrong?

This is so hard.  This is not me.  I am supposed to be strong, decisive, confident.  This is not me.  I had a memory of mom's illness trigger a panic attack.  I never believed I would or could experience such a thing.  It was terrorizing and painful.  Two days later, I am still so very sore.

I am normally very active, and continue to be.  I just don't enjoy the volleyball, kickboxing and workouts.  I do it anyway.  I know it is good for me.  But, I cannot shake this bitter cloud of guilt, dismay, regret...  I try yoga for the stiffness and for the meditation, the mind.  I find if I do something too slow, or too quiet, these terrible thoughts and visions of my mom pop in my head.  As long as the yoga flows, I am ok.  Quiet breathing and meditation is right out, at the moment.  I suspect, in part, all of this is due to the impending anniversary.  My hope is that this eases after the anniversary.  It is exhausting.  I am so lost.
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