I had originally been crafting a blog post entitled “Caregiver Learning” which included quotes and insights from my reading about dealing with someone with cognitive decline. Being an avid learner, I was reading about being a primary caregiver to someone with dementia, at both moderate and advanced stages.
I had not yet gotten to fully embrace the advice to “If they think they are right, let it go. Even if they are wrong, as long as it doesn’t truly hurt them, let them think that they are right.” And the corollary advice of, “Stop correcting them and learn to say, I’ll look into that for you” versus arguing the point. I was dealing with her frustration of memory loss, accepting (me trying to) personality changes, and learning about paranoia (and the pain it can inflict verbally). I had hoped the stimulation of the Assisted Living facility would be good for my mom – both mentally and emotionally.
That learning focus changed dramatically this week, as I shifted my focus to end-of-life care. And now, I am focused on the to-do steps after death. My niece suggested I take the time today to write a post to help me process what has happened.
My two Facebook posts this week (captured below) summed up an insane 6-day period of time. On the day my mom was to be released from COVID quarantine at her Assisted Living facility, she experienced a severe health crisis. Within days, we were on end-of-life care with Hospice.
Making the decision, recognizing my mom’s often voiced wish to NOT do any more major surgery, even life-saving (and yes, highly risky, long recovery period, low post-surgery quality of life) surgery, was one of the hardest things I have ever done (she was unable to make the decision at that point). Realizing that all the plans I had for her living near me were never going to come to fruition was (is) heart wrenching. She actually lived just 24 days in her new apartment, with 10 of those being in quarantine.
But, having family and friends rally around for her final days provided me with so much support. Our new friends here in Florida reached out with offers of whatever we needed (from housing relatives to providing food to driving folks to the airport to helping me un-do my mom’s apartment to just being a sounding board) – it was overwhelming, what we would have expected only from lifelong friendships!
- FB post 1 on sharing my niece’s post (one of the proponents of the referenced kitchen table debate): As we (my family) heatedly discussed over dinner the pros or cons of being on Facebook (half of the table isn’t on at all!), I realized it is a way to share key life moments. As my niece mentions (post attached), it’s been a crazy & unexpected & highly emotional 48 hours. My mom unexpectedly had to enter hospice to manage end of life care. Having both my brother & sister with their key supporters (my SIL & niece) arrive within 36 hours of the call about my mom’s unexpected situation was overwhelming, in a positive way. Having local friends offer beds, rooms, even a camper & then fill my fridge with enough food to feed us for days continues to bring tears to my eyes, in a good way. This was certainly not the plan I had for my mom’s move to Florida. But the support I’ve gotten from everyone has helped me so much. Yes, the love is tangible!
- FB post 2 (and email to many): With a very heavy heart, I am writing this note to let you know that my mom (Esther) passed away yesterday evening. In her final moments, she was surrounded by those whom she loved and who loved her so much – J & B, L & D, and me & T. J and L, with their respective loving support, arrived here in Florida within 36 hours of hearing of mom’s unexpected health crisis and need for end-of-life care. We were all able to be with her in her final days, letting her know how much she was loved and the positive impact she made in this world. Per my mom’s wishes, there will be no funeral, no obituary, no memorial. However, should you feel inclined, I am sure she would appreciate a contribution to Hospice – either Suncoast Hospice or your own local hospice. The staff at Suncoast Hospice in Pinellas Park treated my mom and us with kindness and compassion, making sure my mom’s final hours were spent in as much comfort and dignity as possible. To those who have already reached out to us, your support in these final days lightened the load for us in so many ways (emotionally and physically). Thank you for that.
As I process this unexpected final good-bye, I need to focus not only on the practical next steps (I am executrix & trustee), but allow myself to grieve about what will not be and remember the woman she was before the cognitive decline.
RIP Mom.
And, as my niece so wisely suggested, this has been therapeutic!
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I’m sorry to hear of your loss and so comforted you and your family got to be with your mom during her final hours. My love and memories help you in the difficult days are ahead.
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My thoughts and prayers are with you during this difficult time. Give yourself time to grieve and find peace.
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Pat, my sincere condolences to you at this sad time. Thank you for sharing with us with your usual grace.
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Sending you lots of love at this difficult time. It must have been a terrible shock. Do allow yourself time to grieve as much as possible. How heartwarming that so many friends and relatives have been there to support you. Xx
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I’m so sorry about the loss of your dear mother. That she was surrounded by those she loved must have been a great comfort. Remember to take care of yourself in between taking care of others. Virtual hugs from the west coast.
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Dear Pat, so sorry to hear of your mothers passing and what you experienced. Our best laid plans are sometimes just that, plans. I hope that sharing your experience brings you comfort.
With deep sympathy, Linda
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Oh Pat, I’m so sorry to read this – my sympathy to you and your family. Take care and grieve in the way and the time you need to.
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My deepest condolences, Pat. Losing one’s mother is so hard under any circumstance. Unexpected loss has complications all its own. May you find peace and comfort from your loved ones and your many happy memories of your mother.
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Condolences Pat. You clearly did a lot to help your Mom in her final years. Be kind to yourself going forward, especially with the executor duties. It’s a tough job, even when you’re not grieving. Tracey
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I am so sorry for your loss. I lost the love of my life in December.Your post hit home. Thank you for sharing your story. Sending you healing and peace.
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I am sorry for your loss. God bless you.
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Pat, I’m so sorry for your loss. Words fail me at times like this, I’ll just say I’m glad you have family and friends surrounding and supporting you. Sending you peace & comfort.
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Pat, my kindest regards to you & your family at your mother’s passing. We think we’re going in one direction & in a heartbeat, we’re headed in another.
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I am so sorry to hear this. Losing a parent is never easy. I’m so glad you’ve had such comforting support which I’m sure will continue. Hugs and prayers.
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Pat, I am so sorry for this turn of events. Prays for peace and comfort for you and your family during these difficult times. May all of you remember the wonderful times and find ways to smile and even laugh as go through the memories.
If there is anything I can do from up here please let me know. Hugs to you all!
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I am so sorry for your loss. You have a wise niece, wonderful friends and a caring family. You are, in my words, blessed in so many ways. And, because you may forget this piece, your Mom was also very blessed to have you as her daughter. You gave her a good death, a generous gift. Take care!
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My condolences Pat, take care of yourself. All the best, Tony
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Pat, I’m so sorry. I’m glad you had the support you needed. It is comforting when you know you are surrounded by so many people who are supporting you.
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I am so sorry for your loss, but I am grateful your new village stepped in and that family was there for each other. Having been down the path of dementia I know it’s very difficult, so the only blessing is that your mom and your family didn’t end up on that path for years. Give yourself time to grieve before and during the list of to-do’s. Sending you a virtual hug.
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Oh Pat, I’m so sorry to hear this. I know you had such wonderful plans in place to care for your mum in the years ahead and to make the time as easy for her as possible. This is so sudden, but I’m glad you had the support of so many friends and family to help ease you through it. Sending much love (and a warm hug) to you as you process all of this and re-imagine the future now that your lovely mum has passed. xx
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I am so sorry for your tremendous loss.
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Pat, I am so sorry. As you already know from my blog my husband died last fall from Primary Progressive Aphasia, a rare form of dementia with early onset. Consequently, your post hit home. You wrote so poignantly about your loss. Your love and care for your mother is obvious. Thank you for sharing your story. You are in my thoughts. Sending you love and light. Kathy
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Pat, I am deeply sorry for your loss. I know you were doing all within your power to improve your mom’s remaining time on this earth. As you stated, the most important thing now is to remember who your mom was before her cognitive decline and celebrate that woman as you grieve her passing. Blessings.
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Blessings to you all. It doesn’t lessen the sadness, but eventually I hope you can rejoice in your mom’s avoidance of a long decline. I just lost my sister (we’re in your mom’s generation!) You might actually find a small comfort in my take on that on franjohns.net. Meanwhile, give yourself TIME with the executrix duties and grace for the care and love that you & all the family gave your mom.
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Pat, please accept my condolences on the sudden loss of your mother, as well as on the unenviable task of caring for her through dementia. Odd timing for me because I am reading a book about looking at dementia through a (Christian) spiritual lens, because in part someone I am close to has been diagnosed with cognitive impairment. The brief thoughts you shared in this post are helpful to me personally, for that I thank you. Again, please accept my condolences. Michele
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Pat – My heart goes out to you and your family on the loss of your mom.I hope you feel comforted by memories of love and warmth. May she Rest In Peace.
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