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Caregiving Comes To An End.....5+ Years
Posted: Thursday, May 9, 2019 10:52 PM
Joined: 5/2/2016
Posts: 35

     Greetings, Fellow Caregivers:

It has been a while since I posted anything, and I'll not get long-winded here.  My caregiving duties came to an end on November 10th, 2018, 6 months ago tomorrow.  This business of grieving/mourning is compounded by the toll that 5+ years of solo full-time caregiving has taken on me.  I imagine that this is, and has been, the case for others as well.  It is said and written that grief and mourning can deplete a person, and I am finding that to be true.  And when one is already depleted, or empty, from intensive caregiving, the emptiness can be acute.

I write this to encourage anyone else in such a position to keep the faith, don't do anything  irreversibly harmful to yourself, do what you can to take care of yourself today, and allow time to pass.  Time takes Time.  Cry when you need to.  Sob when you need to.  Withdraw when you need to.  Then wipe your nose and eyes, and do the best you can that day.  The path gets softer and more manageable as time passes. We get breaks between the waves of grief and pain.

Know this, fellow caregivers, that our work is, and has been, sacred.  We pay a price, we don't get paid in material goods, but the payoff can be peace of mind and heart that we rose to the occasion and saw our duty through to the end.


Shalom to you all,


Posted: Thursday, May 9, 2019 11:28 PM
Joined: 4/1/2014
Posts: 4821

Aaron, saying a prayer for your dear mother and for you. Your words are powerful and true. Take care and enjoy life.
Posted: Friday, May 10, 2019 10:44 AM
Joined: 5/2/2016
Posts: 35

Thank you, Tess.  I presume that your posted picture is you and your Mother.  She looks like a sweety!  My own future is uncertain, as I have nothing to go back to.  Years of solo caregiving have changed pretty much everything.  I do endeavor to view this as a blank canvas, though, where anything is possible one day at a time.


Eric L
Posted: Friday, May 10, 2019 11:37 AM
Joined: 12/5/2014
Posts: 1050


We know that my MILs dementia battle is marching on towards the end. We moved in with my in-laws 7 years ago for a "temporary stay" that became permanent. Shortly after we moved in, we found out that my wife was pregnant with our 3rd (surprise!) so we decided to extend our stay a little longer than we planned. A few months later, my FIL was diagnosed with pancreatic cancer, so we decided that our exit would put off indefinitely. At the same time, we noticed that my MIL was having a few memory issues. My FIL passed in 2015 and MIL was diagnosed right around the same time.

I told my wife last night (in addition to being parents) that we have been caregiving now for the better part of 6 years. Our daughter just turned 6 and my wife was taking her dad to chemo while she was pregnant. Right after he dad passed, our focused shifted to her Mom. It's kind of crazy to think that we have been caregiving since my daughter was born.

My wife told her brother last night that it might be harder with their Mom. Now, my wife wasn't particularly close to either to either parent, but I don't think they ever really got to properly grieve with their Dad. We went from her Dad's passing straight into caregiving for her Mom.

Anyhow, I'm just rambling..
Posted: Friday, May 10, 2019 12:57 PM
Joined: 10/9/2014
Posts: 641

Thank you for your words of wisdom.  I do marvel at hands on caregivers.  I did that for a short time and it really took a toll on me.  It took me a year to recover.  I'm now 5 years into my LO being in MC. Still the enormous responsibility is incredible.  

It sounds like your journey was very intense and profound. I am sorry for your loss, but, relieved that your mother is now at peace. I hope your health is improving. People rarely understand the enormity of the situation.  Take care of yourself. 

Posted: Saturday, May 11, 2019 10:46 AM
Joined: 9/5/2018
Posts: 38


Thank you for your thoughtful advice and articulate message.  My journey lasted 10 years and my loving partner passed just days before your Mom.  It was six months for me on May 4th and I spent the day crying and mourning as if it had been yesterday.  As a sole caregiver the toll it takes is enormous, but in retrospect I wouldn't have done it differently...not for him or for myself.  We caregivers are a special breed and now that my journey is over, I am reaching out to others still on the path offering advice and support.

Blessings and peace to you Aaron...your Mom was fortunate to have you.



Posted: Sunday, May 12, 2019 9:52 PM
Joined: 5/12/2019
Posts: 1

Eric L wrote:
"....but I don't think they ever really got to properly grieve with their Dad. We went from her Dad's passing straight into caregiving for her Mom.

Eric L, I'm brand new here and was just looking through the forum to see where I fit into this path I find myself in and saw your comment. My husband and I were brand new "young" empty-nesters, both early 40s. We spent last year traveling in an RV fulltime for my husband's business. We came down to spend some time with family for the holidays last year when my dad had a TIA while on the phone with me. That turned into a hospital stay which led to a cancer diagnosis (he had been dx with non-Hodgkins Lymphoma and colon cancer earlier but was then dx with Sarcoma which had already spread rapidly.) We stayed to help but he died exactly 1 month later. My mom's memory had been declining over the last 6-7 years but the focus had been on my dad's care for the previous few years and my parents resisted getting her dx and treated even though my siblings and I encouraged and then started to really push. Once my dad passed, it was obvious my mom could not live alone. So our holiday visit turned into moving in as of Jan. I started working on an official dx for her and got her to Mayo Clinic where she received a preliminary dx of moderate AD. We are supposed to go back for the full testing end of July. She has declined rapidly from that Feb dx. From what I am reading, we are getting into the moderate-severe stage all ready. 

I am in awe of what you and your wife took on, with a baby and for 6 years. I don't know how long this path will be for us. We are definetely well into the progression and I feel so behind the "8 ball", like we are trying to play catch up in overtime but what really got me with your post is your comment of not being able to really grieve because the care-giving duties began right away. I'll add that 10 days after my dad passed, my MIL also died from kidney failure. They live 3 hours away from my mom so my husband and I spent most of that 1st month apart, care-giving separately as he helped his dad until his sister could move in. So to say I understand not being able to completely grieve because of care-giving feels like an understatement. 

Now I'm rambling but thank you for helping me see I belong here. 



Posted: Monday, May 13, 2019 12:21 AM
Joined: 5/12/2018
Posts: 54

Aaron, what a beautiful post, thank you for sharing.  I hope that your path will be bright with your new adventure ahead, whatever it may be. Prayers to you and all our LO's deceased. 

This journey becomes so lonely and even now with all that is trying to be done in this country to help those caregiving at home it just still  is not understood by many.  I especially liked your comment "rose to the occasion" because I know this is a special job, one of my hardest and yet most fulfilling.  My mother watched me grow as a child and now I watch her age and do child-like things and I'm happy I can be here to help her like she helped me. 


Posted: Monday, May 13, 2019 9:16 AM
Joined: 3/8/2018
Posts: 770

Ainbinder wrote 

Know this, fellow caregivers, that our work is, and has been, sacred.  We pay a price, we don't get paid in material goods, but the payoff can be peace of mind and heart that we rose to the occasion and saw our duty through to the end.

Thank you for sharing this, condolences on the loss of your mother 

Johns baby girl
Posted: Tuesday, May 14, 2019 11:06 AM
Joined: 2/26/2019
Posts: 56

Thank you, Aaron.  I needed that today!  I wish you Peace.


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