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Happy New Year 2021 to everyone; may this year bring us all some peace, hope and comfort!! After 6 months of only reading other threads but not posting myself; this morning I find myself in need of your thoughts, experiences and/or support with the issue of when to tell mom its okay to let go.


I don't think she's hanging on to anything at the moment but during the last 15 years, my mom specifically asked me to tell different terminally ill (3) family members it was okay to let go - 2 of these were via speaker phone and the 3rd was in person; in all 3 cases within moments of me Telling our loved ones that their immediate family members would be okay, they're all thriving in their lives because of the love and support they gave them (etc...) and that their job was done; all 3 of them passed within moments.


My mother is in the end stages of Alz dementia, in a MCF, I caregive for her daily for 4-8 hours. She's ambulatory but a full assist. She is on hospice. She's sleeping more, and talking more and more frequently about being tired and seeing her folks as the days go by; although I don't think she's holding on right now, I want to do my best to make sure she knows its okay to go when she's ready. She has tried to articulate some seemingly unfinished business, but I assured her we (sibs and me) were taking care of everything. It appears to subside however, I can't be 100% sure!


Please help me navigate this issue as I do want my mom here but not if she's only hanging on for us! I also, don't want her to feel like I'm telling her its time to go either. This is very difficult!


I hope this makes sense.


Thanks in advance for you thoughts!!


HAPPY NEW YEAR 2021!!!

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My dad passed away with hospice care this past summer. Though he didn’t have any dementia I can relate to some of your story. He was so very tired of his health issues and often said he didn’t want to be here anymore. His body had worn out and he didn’t want the struggle any longer. We had some of those talks, about seeing his mother and his wife again, about his life experiences, and us saying goodbye. The goodbye talks were incredibly hard for me. Others in our family told him it was okay to go. I just told him I didn’t blame him for wanting to go and understood. Not sure there’s a difference there. I think it’s fine to say all this, honestly not sure how much a person near the end processes it. Guess we won’t know til we’re there ourselves. I wish you peace in this, don’t assume the end is either near or far, it can be so unpredictable.
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Floridagirl6 Jan 2021
Thank you so much for sharing, it is greatly appreciated!
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My disabled 18 yr old nephew came to live with my Mom 6 yrs before I had to take her in. My sister had died 12 yrs before. He never knew his father. My Mom lost her Mom at nine and her father was never in the picture. So she always had a soft spot for my nephew and his disabilities made her worry about him.

She was in a NH on Hospice actively dying. Everyone had gone in to say Goodbye but my nephew. We went to visit. He sat next to Mom and held her hand. He told her he would be alright and said Goodbye. (I told him not to say "see u later") 20 min after we left, Mom was pronounced.

The nurse told me she has seen it before, the hang on for that one person. She has asked families "Is there someone who hasn't said goodbye". Once the son lived out of state. She suggested that the sibling call him, put the phone to the parents ear and tell them goodbye. The Nurse claimed that the patient passed not long after.

My GF told her Aunt it was OK to go. She would again see her beloved Gilbert. She passed peacefully.
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Floridagirl6 Jan 2021
Thanks JoAnn29!
My mom always told me that; SOMETIMES people may wait for one person in particular to say goodbye or express something. My Grandmother didn't eat or drink for 14 days, had all her living children (8) by her side, many other family members coming and going daily. Grandma was at her ranch so there was a lot of room; it was basically the hub of our entire extended family for my entire life (although we were the only family who lived out of Texas) we visited a min of 3x a yr throughout my childhood and then 2x yr until Grandma was diagnose. Mom and I then visited every 8 weeks (staying for 2wks ) to Care for Grandma because all the Kids would rotate weeks/weekends and Grandma had a caregiver 24/7 for years, who lived in 1 of the extra bedrooms at the ranch; she had weekends off-and she was like family. I usually traveled back and forth with my mom from Florida to Texas when it was her turn but, I had to fly back early for another family issue...so 14 days in my mom called me and said "we think Grandma is waiting to hear your voice, everyone else has been here and I want you to say goodbye and that it would be okay to go if she's ready, that we will all be okay"
I had just been there for 2 weeks but via speaker phone I did just that... as I was telling her what a great mother, grandmother, great-grandmother, great great grandmother and friend she had been to all of us ( the room got quiet and I didn't know what was happening -so I kept talking)... how if she was ready to go see Grandpa and other family members it was okay, they were waiting for her in heaven and that I loved her now and forever, that I would see her again, I thanked her and recited PSALMS 23. My mother said she had to call me back. When she did; she said Thank You! My grandmother had passed peacefully surrounded by love and family. Apparently she was waiting to hear something I said or my voice; I'm really not sure to this day! Quite emotional to this moment!! Thanks
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As hearing is the very last sense to go when someone is actively dying, it is important for us to be able to say whatever we deem necessary to the dying person, to not only help them, but us as well. Often times it is just letting them know that we're going to be ok, and other times it's just a matter of when they're ready to let go.
On Aug.5th 2020, I was told by hospice that my husband would be dead in 3 days. Well long story short, he didn't die until Sept.14th, and during his long 6 week dying process, I many times told him it was ok for him to go and that I was going to be ok. My children(his stepchildren)also told him it was ok for him to go and that they would look after me, and not to worry. And yet he lingered and lingered, much to the surprise of his hospice nurses. I pretty much didn't leave his side during those 6 weeks, even sleeping next to his hospital bed on our couch in the living room. His nurse finally said that perhaps he didn't want me to be around when he died, which I have heard that sometimes can be the case, however I never really felt that with him, because it had been just he and I for so many years tackling together whatever life had to throw at us, but I decided to run to the grocery store, and told my husband where I was going and if he didn't want to die with me here, now was his chance. Well when I returned, he was still alive. My son(who lives local) and daughter-in-law returned from their annual anniversary beach trip, (which I had told them not to cancel, since we weren't sure when he was going to die)later that afternoon, and stopped by to visit. We knew that his time here on earth was coming to an end soon, and it had been decided early on that when he did die, I was to call my son so he could be here with me when the funeral home came to get his body. So the next morning at 1:40 a.m. when I awoke to give my husband his medications, he was gone. His body was still warm, so I knew that it hadn't been too long since he had died. I of course called my son, and then hospice. I believe in my heart of hearts that my husband was in fact waiting for my son to return from his trip, so that I wouldn't have to face those final moments by myself. He was always sweet and thoughtful like that.
And so I would say to you, say now whatever you need to, to your mom. Leave nothing left unsaid, and just enjoy whatever time you may have left with her. Only God knows the day and time when He will call her home, so just make the most of every day. Happy New Year!
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Floridagirl6 Jan 2021
Thanks funkygrandma59! I agree and we fortunately have had hours a day that we look through pictures and talk about anything and everything but, I've never said "Mom, you can let go..." I've also not felt up to this point that she is "waiting" on anything. She's simply getting more and more tired and the alzheimers is progressing. I read AlvaDeers post and can't stop thinking about it.
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I spent my life as a nurse. I assure you, dying is not as easy as being told to "let go" and making a choice to "let go".
PLEASE DON'T DO THIS.
Every single nurse I know has learned this lesson the hard way with time. I will give you the story of my best friend, C. who cared for her brother who had AIDS in the early times. A hospice RN she cared for him at home. Her last day with him she held him and looked at him and said "It's al right Nick. You can let go. You can go now". And the look of TERROR in his eyes nearly knocked her out. She said he looked straight up (he was unable to verbally respond at this time) into her eyes with a look that said "You mean I am DYING???? NOW??? I am dying".
So no, I vote never on this one. You should sit quietly with her and discuss all your memories you shared, all the love you had together, all the lessons you learned from her. And as to the unfinished business yes, definitely discuss whatever SHE WANTS TO DISCUSS. If she brings up "There is something I want to tell you about when I go, before I go" then say "Yes, please tell me".
SHE GET TO DECIDE is what I am trying to tell you.
I have noticed when this question comes I am more the odd man out. Many here have told loved ones they "can move toward the light". I do not do that. I listen. I have had patients tell me they recognize they are dying but cannot talk to families because of the family denial thing. They talked to me. So if your Mom wants to discuss that she is ready to go, is tired, tell her "yes, I can understand that; I can understand wanting peace now. Is there something I can do for you? Is there any pain? Do you need medicine?"
Our bodies fight to stay alive. WE often are ready to go. That doesn't mean that that pesky pump of a heart won't keep on pumping long after we wish it would stop. There's no off switch.
I wish you luck. This will happen in its own time. Be certain hospice knows your Mom is ready and so are you, and that you want her comfortable, even if the administration of medications for comfort may hasten death by some seconds, minutes, hours.
I am so sorry for your loss. I am so thankful for Hospice, and that you are so caring and loving, and remember, that is what she knows of you now. Your love.
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Floridagirl6 Jan 2021
Thanks for your thoughts AlvaDeer. I'm off to see mom but can't quit thinking about your post. Will catch up again...
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This hits a little too close to home.

Daddy died 17 years ago today. I am usually OK and just mark the day with a calm reflective moment. Yesterday, Dh opted to never get out of bed so I was essentially alone all day. Too much 'alone time' to reflect on how much I miss my sweet dad.

Daddy didn't pass until we all were there with him and went around the room, telling him that we would be OK, he could go. I think he needed that, to let go.

I hear enough people relating very similar scenarios, so I know it's a 'thing'.
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Floridagirl6 Jan 2021
Thank you for responding and sharing!
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Being with a LO during their final days is so difficult. What DO you do? What do you say? Does it even matter? I don't know. I do believe, however, that touch is important. That the sound of your voice is important. Whether she has hours or days or longer, she'll know you're there with her. That may be all that she wants.
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Floridagirl6 Jan 2021
Very true. Thanks for your thoughts.
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I have NEVER said “Goodby”.

As an active “believer” that we are all guided by “presence”that surrounds us, I don’t believe I should impose my thoughts about when one departs from this place to the next.

Instead, I consider that a sacred bond between the person who is departing and those who will accompany them.

I would not presume to enter into that “place” because I would not understand it well enough to know “when” was the right or wrong time.

IMO simplest is best. That, for me, would mean not presuming to know the day or hour or moment when a Loved One departs.
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Floridagirl6 Jan 2021
Thank you for sharing your thoughts. Much appreciated!
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I think always saying 'I love you' when leaving is better than "good bye".

I lost a dear friend to suicide some years ago. I had been at a 'girl's night' cabin party with her 2 weeks prior to her death. We both happened to get up in the middle of the night and crossed paths in the kitchen. Talked for a few minutes, and even though I was going to see her at breakfast in like 4 hours, I said "I love you" to her. She got up early and went home and wasn't at breakfast. That was the last time I saw her. Her death was not a huge surprise, but tore our collective hearts out.

How glad I was that my last words to her were that I loved her.
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Floridagirl6 Jan 2021
I love you are always my last words. Thank you!
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My mom was 92 when she passed in June 2019. I can count on one had how many times mom had been sick with just a cold. She even survived the Scalloped Potatoes massacre Christmas 2010. My son and I were very sick from eating them , not cast iron stomach mom. So in fast forward to when she left AL and moved over to SNF she had been to the ER for several times with UTI’s, one for bleeding, and then January 2019 and diagnosed with CHF. She told me, everything is going wrong. My mom was never one to feel sorry for herself..I felt then that her time would be coming.
June 2019, I went to visit and take her eye glasses back to her from being repaired. This was a Tuesday , she was happy to get her glasses back. She was on Hospice by this time. She was in bed sleeping when I came in, and she woke up. She kept dozing off and waking up. I asked if she was tired and she said she was. I told her to go ahead and sleep. I sat there for 1 1/2 hours and prayed for God to take my mom. Mom was never afraid of death, she knew she would be with God when her time came.
She passed that Friday. Her Hospice CNA had been with her for a good portion of the morning. The CNA left to check on another Resident, came back 2 minutes later and my mom had passed peacefully.
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Floridagirl6 Jan 2021
Thanks so much for sharing your story, it was helpful!
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This is such a challenging topic in the whole realm of caregiving and moving on.  I was touched by the passionate and heartfelt responses I've read here, but reading AlvaDeer's always insightful advice spurred thoughts that made me change what I planned to write.

When my sister was segueing toward the end stage of cancer, we did discuss "letting go." She was a nurse; she knew her condition better than I.  I thought that I might have provided her comfort; I really don't know.  She was also tenacious in fighting cancer, was still asking for chemo even when she was dying.  So in retrospect, I don't think our "letting go" conversation was helpful, or harmful.

When my father was ready for palliative care, on his way to dying, I gave a lot of thought to who to bring to see him and who to ban, what to say, etc.   On the last day, when I knew it wouldn't be long, I told him how much he meant to me, how much he guided me in my own life, how much I had learned from him, and other observations on how much I admired him and his ability to adapt, and to be creative, and how he had so positively affected my life. 

One of the nurses told me that patients can still hear at that stage, so I hoped he heard me.   When I thought I had said all I wanted to say, I said good-bye, and left, thinking that with his labored breathing he was just waiting for our last good-byes and didn't want to leave while I was there.

About 10 minutes after I got home, I got the call.  Dad would always call me if I didn't call right away after returning home.    I think he waited the typical travel time, then departed.   I was soooo glad I had said my goodbyes then, and complimented and thanked him for what he gave me in his lifetime.  

Thinking back, I think I made the right decision.

Floridagirl, my suggestion would be to compliment your mother and tell her how much she's guided your life, and how proud you are to have her as your mother, and not mention the departure issues.
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Floridagirl6 Jan 2021
GardenArtist, Thank you for sharing your story and your thoughts! They are much appreciated!
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