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Posted: Friday, March 25, 2022 9:27 PM
Joined: 8/11/2021
Posts: 57

So it's been a week since my Dad died of this wretched disease. The day before and the day of his death I experienced the most searing raw pain and grief I have every experienced in my life. It rocked me to my core, brought me to knees and I couldn't imagine sustaining that level of pain.

Enter the day after, numb. Sad and monotonous numbness, literally I feel like a Zombie. And yes I listened to Floyd's Comfortably Numb and it is my leitmotif right now. Functional, going through the motions, comfortably numb.

I have some observations and I wonder if you all have experienced similar...

First, death is highly transactional. I mean wow, a whole industry I never knew existed. It can be so easy to lose yourself in the minutia of all it takes to wrap up someones entire life in transactions. From the mortuary, to the obituary in the paper, to the lawyer, to the bills, to the MC, to the complaints you need to file because of conduct unbecoming a caregiver, to the estate and the courts and the wills and FedEX oh my, to WTF else crawls out and needs your attention to distract you from the huge gaping hole in your life.

Second, the people. If you ever wondered who your people are when the chips are down, this is the time they show up and they don't leave. They don't leave when you ugly cry, they keep calling/texting/showing up even when you know you're supposed to say it's ok, when it clearly isn't. It's family, it's friends, it's people you barely know in some cases or lost touch with, whose fierce unwavering loyalty and support is the gift in this whole awful affair.

Then there is the void. Right now it doesn't hurt, because... numb. But the first few hours of my day were always dedicated to Dad. I got up early handled the emails from caregivers, phone calls to doctors, bills, hospice, nurses, lawyers. And the best part was a Facetime call with Dad. That is all gone. My purpose these last two years was showing up everyday to honor this man however I could. It had become my identity. Hi my name is L&L and I'm guardian for my Father. And that void is so big and I look at it and think, just wow...  I'm glad I'm numb right now. 


Posted: Thursday, March 31, 2022 10:50 AM
Joined: 9/10/2021
Posts: 569


and yes -  'an industry' is one way to put it.  please don't let it overwhelm you.

and adding - anyone going through all this mess - figure how many 'certificates' you need, and then get about 5 more.   yeah, 'stuff' just seems to comes out of the woodwork.


Posted: Wednesday, April 6, 2022 2:11 PM
Joined: 4/1/2014
Posts: 5213

So sorry for you loss, Love&Light. I hope things are starting to calm down for you and the numbness is being replaced with the knowledge you did a good job taking care of your father's needs during his long illness.

 I noticed those very same things you observed and I tried not to take anything personally. I was disappointed in a few of the hospice caregivers, but the wonderful ones were the only ones who mattered to me in the end. Thankfully mom had made funeral arrangements with a very good mortuary and bought insurance and everything was handled beautifully. We are a small family so mom's estate was easy to deal with. I guess that is a lesson to us all, make your death dealings as easy as possible for the family by making arrangements now. Thank you for sharing your observation with us. Take care!

Posted: Saturday, April 23, 2022 8:44 PM
Joined: 8/11/2021
Posts: 57

Thank you Susan and Tess, your words helped.

It's been a month since my Dad died. I am feeling less numb, but there is certainly a baseline of melancholy that I function on top of. I start to really feel sad when I need to handle his financial affairs like bill paying and details with the house sale.  I try not to spend too much time doing those necessary but loathsome tasks. 

I look at my favorite picture of him everyday and try and remember him being happy. This is very hard to do because the last year he was not.

I'm trying to do something really nice for myself every week, an exercise in self care. Like this week, I went and got my hair done (it's been a year...) And now I look like I've spent the last month on a fabulous Caribbean island. Instead of actually what I've been doing.

It's all so odd. There are huge swaths of time and conversations I don't remember from this past month. The shrink says it's because my brain is protecting itself. And I'm thinking, yeah I hope so and it's not that stupid apoE gene kicking into high gear.

Mostly I am tired. Hopeful just a little, because of the glimmer of spring and the easing of pandemic restrictions. But mostly, tired.

Posted: Tuesday, April 26, 2022 8:40 AM
Joined: 12/21/2018
Posts: 1442

It's been 3 weeks since my dear husband Jesse died. I can relate to so much of what has been said here. Sometimes I am numb. Sometimes I have extreme sadness and physical pain. I am lost. I am empty. 

Yes, death is an industry. Jesse wanted cremation with no service, so it was straightforward. Alas the funeral home still managed to over charge me and I haven't had the energy to deal with that.

I have been isolating a lot. So many people have called and texted me to let me know they are "here if I want to talk". But what is there to say....Jesse is dead. I feel like my heart has been ripped out of my chest. I am beyond sad....that's about a 3 second conversation. This week I made a point to reach out to some of my closest friends. It helped more than I expected. 

I am trying to incorporate healthy living into my days by eating better and doesn't make me feel any better but it seems like a reasonable thing to do. I am starting a garden in our backyard. Its a distraction. It fills a fraction of the time that I spent hands on caregiving.

I've reached out to the hospice chaplain and am looking for a local therapist. I feel like I am just checking the boxes of what to do. I am fumbling through my days. 

I miss Jesse desperately. At the same time, I am beyond grateful that Jesse is not suffering another second of dreadful Alzheimer's disease.


Posted: Monday, May 2, 2022 9:46 PM
Joined: 8/11/2021
Posts: 57

LadyT, I don't know if this an option for you, but I called the 800 number and they connected me to a grief support group for caregivers. It has been very helpful as the other folks have such relatable experiences going through this journey of grief.

It's on zoom and really lovely with 2 therapists who help lead the discussion. 

Posted: Saturday, May 28, 2022 8:20 PM
Joined: 8/11/2021
Posts: 57

Month 2.5

This weekend I've set a deadline for myself to scan the photos for my father's memorial service and prepare his eulogy. Our family is meeting in the Caribbean to celebrate his life and lay him to rest with his parents in mid June. I've literally been trying to do this for the past month and I just cannot bring myself to complete this emotionally heavy task. 

Sure there are shortcuts, like just letting the algorithm in G Photos compile all the ones of him from facial recognition… that could be enough for the slideshow. But that’s not how my Dad did things. He did them right or not at all. And because I’m his girl, that’s how I’ll do it. I need to be thorough, and find his favorite pictures, the ones where he’s cradling us as babies and happy and young. And the ones where he was on the job with his crew building big things and owning his world. I still can't pass a Manitowoc crane without a severe ache in my chest. And the ones where he’s at the parties, eating cake and standing in front of the sunset. There are so many sunset pictures of my Dad.

These moments in time, these slices of a happier life contrast so severely with the last two years of his life. The elder abuse by his wife, the ‘behaviors’ that resulted in endless medication changes and side effects, the falls and hospitalizations, him being so lost that he yanked my arm so hard it still hurts. 

I can easily handle all of the minutiae like the house sale and the probate and all the bizarre stuff that comes out of the woodwork when a person dies. But this, this thing of summing up someone’s life in photos and in a speech that accurately represents this man and his place in this world, in our lives. It’s daunting and it’s frankly impossible to do.

Posted: Tuesday, May 31, 2022 3:54 PM
Joined: 4/1/2014
Posts: 5213

Dear Love&Light, it sounds like there is a lot good life to celebrate at your father's upcoming service. It is called a celebration of life because that is what it should be. Find all the things that brought your father joy and include them. At my mother's funeral service I asked people to remember her great meals and beautiful cakes, her sweet and loving ways, her laughter and her tight hugs .Perhaps the pictures can show his life's work and you can concentrate on the man he was to his family, friends and community. Was he is the service? If so ask for a color guard to honor him that day.

 I wish you a sunny day in paradise. Re,member your father will be there with you to hold you up.

Posted: Monday, August 15, 2022 11:40 AM
Joined: 8/28/2021
Posts: 62

Love&Light wrote:

 "Month 2.5

I can easily handle all of the minutiae like the house sale and the probate and all the bizarre stuff that comes out of the woodwork when a person dies. But this, this thing of summing up someone’s life in photos and in a speech that accurately represents this man and his place in this world, in our lives. It’s daunting and it’s frankly impossible to do. "

I lost my mom a year ago and my dad 3 months ago. My brother lived near him but my sister and I live out of state. I've taken care of everything online for a few years (bills, making Dr appt, medication, et). I visited for weeks and months at a time for the past 4 years. I'm a daddy's girl. I'm sorry you're doing the "summing-up" all alone. You're right, we can't possibly sum up their whole life. Remembering and honoring them will happen for the rest of our lives. Almost immediately after dad passed away I saw him (in my mind) and he was SO happy! He was happy to be with mom again. He was enjoying a freedom to move that he'd missed for years. Sometimes I think, I should have told him this or that. Then I remember that he can hear me now. Or he knows my thoughts? I don't have to regret what I did or didn't say. I can just tell him and Mom what I need to. At least, that's what my faith in the Lord tells me.
You're in my heart!

Posted: Thursday, August 18, 2022 3:42 PM
Joined: 8/18/2022
Posts: 4

Dear L&L 

" But this, this thing of summing up someone’s life in photos and in a speech that accurately represents this man and his place in this world, in our lives. It’s daunting and it’s frankly impossible to do."

OMG yes!!!!  We just had my father's services Aug 5 & 6 and I kept thinking the same thing!  I tried to give a speech and even said - "how am I supposed to sum up my dad standing here? I could talk about him for days and not scratch the surface!"  

Not to mention you are trying to organize a lifetime of thoughts/feelings/stories while your brain is at its most fragmented.  We got through it and it was lovely, but once it was over it was like I had been run over by a semi ... now all stuff is done, now what?  Oh yeah, feel that's what!

Now the picture boards sit in my mom's basement, the slideshow sits on a harddrive, ashes sit on my dresser, pictures need to go back into frames, everyone traveled back to their homes and somehow the world keeps turning.  It is all so surreal!

As far as what you said about the people - "It's family, it's friends, it's people you barely know in some cases or lost touch with, whose fierce unwavering loyalty and support is the gift in this whole awful affair." Absolutely 150%!!!  

And the tired ... the word "tired" doesn't touch on the level of exhaustion that comes over me!  I have 2 young kids (7 and 3) and work fulltime, I know I need to listen to my body and take care of myself, but when?!?!  Everyone asks how I am and the first thing out of my mouth is "I'm tired, I just really tired!"

Thank you for sharing - I am finding a lot of support in your posts today and hope you are finding your way.

Martin Robbins
Posted: Wednesday, September 28, 2022 9:32 PM
Joined: 6/11/2022
Posts: 58

I wish I knew you better, then maybe I would know better what to say.

My mother passed Monday.  I was her primary caregiver in home hospice for nearly two years.

I wish you peace and endurance.