Date
August 07 2019
Written By
Barbara Karnes
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"One Lone Tear", Dementia at End of Life

"One Lone Tear", Dementia at End of Life


Comments

Ruth (Reed) - August 09 2019

I wanted to quickly share my grandson’s message to me when my mom died. My daughter and her family lived out of state and thankfully had visited my mother just before she lost all memory of us. Even tho he was only 5, he remembered her and was very interested in all of the talk while we were traveling down our “dementia road”. After I call my daughter to let her know about my mother, she told the kids. My sweet grandson said “ please call Gramms and tell her that Grandma will only pass one time. She won’t have to worry anymore”. I thought about that so much. His insight was amazing to me. We had caring staff at the nursing home as well as our hospice team. Now I am a hospice RN and I love being able to encourage my clients and families to embrace the time they have. Thank you so much for sharing your wisdom.

Judy Spencer - August 09 2019

Hello Barbara. Thank you for your good work. I can’t tell you how valuable it has been and I refer to your booklets often when talking with Patients and their families. So many family members will feel they have to “stand watch” and be there when their loved one expires. They are often exhausted and barely able to cope. I tell them, "your Mom is the boss. She may decide to slip away when you are not in the room in order to protect you. This could be her way of taking care of you one last time. You know her better than I do. Is that something she would do? " Often, they will smile and say, “she always was the boss. That sounds just like her.” Every family is different, but this seems to help.

Megan - August 09 2019

Sadly, in the hospital setting, the word “expired” is said out loud and typed into patient charts. I also felt shock the 1st time I heard it. A MD asked me, “What time did the patient expire?” So blessed to be a hospice nurse where patients are people and not room numbers or diagnoses. Peace to all.

Barbara - August 08 2019

Hi Carol, We have limited control over the time that we die. That means we can chose to have someone with us when we die or we can protect a person by dying when they are not there. You are right, that control can also be used to make it easier to leave those we love. Blessings! Barbara

Carol Alix - August 08 2019

You and others say that the dying wait until we are out of the room to leave to help us from the pain. My best friend died in 2013 from cancer. She was in hospice for 35 days. It was a slow and gradual decline daily. Susan had said to me early on, to not have her husband stay at the hospice center when I knew it was time for her to leave. Let him go on home. Susan said ‘it will be harder for me to go if Larry is here.’ I remember her words and it makes sense. Perhaps the dying just can’t let go either and when loved ones are out of the room it allows the dying – - to depart in peace.

Barbara - August 08 2019

Hi Louise, thank you for sharing your experience as your mother was dying. When will we who work with people learn that words matters. They convey meanings so far beyond the definition of the actual words. Of course you all would go to sleep after the exhausting, stressful days that you had as a family. Going to sleep certainly did not show a lack of love or grief, no guilt needed for your actions. Let it go and hold on to the gift you gave your mother in her last days. My blessings are with you and your family. Barbara

Barbara - August 08 2019

Hi Stacy, thank you for sharing your experience with your Nanny as she was living her challenge with dementia. She was fortunate to have her loving family support her during that time. Blessings! Barbara

Louise - August 08 2019

Barbara, thank you. I’m a social worker and have worked in hospice care (now work with people with dementia and their loved ones) and I’m so grateful for your posts. I can relate to staff that say things that are not helpful and have a lasting impact. When my mother died my three sisters and I stayed with her the last three days of her life, when we brought her home to die. She was agitated the whole time, and we were treating her agitation with meds, but it continued and none of us were sleeping. She died on the third night, and the coroner came for her body, leaving around 3:00 a.m. We called the hospice answering service just to let them know, but we handled things on our own. We were exhausted from her care and the emotions, and we went to sleep, waking just before 8:00 a.m. to a phone call from the chaplain. He knew she died in the wee hours but he “knew you certainly wouldn’t be sleeping, given that your mother has just died.” I’ve never lost that comment. Even though I know we were physically exhausted and relieved for her, that she was no longer agitated and most definitely needed to sleep after 72 hours of no sleep, his comment always made me feel so guilty. I know it’s not rational, but it is there.

Stacie Inman - August 08 2019

As I read this letter, I was shocked at how the nurse notified the family of the death and her comment about the lone tear. Barbara, thank you for validating my shock and surprise. People don’t expire, licenses and permits expire, people die. As a hospice social worker for almost 33 years, I have witnessed that lone tear so very many times with a patient. I hold the memory of my sweet mother’s tear as a message of comfort that she was being met by my dear Dad and others that had died before her and were welcoming her home as well as a goodbye to my brother and I and our families that she would miss us and her earthly life, but that it was time to move on. This letter was another reminder that we must continue to offer on-going education and support to staff that care for our patients, to their families and to our hospice team members. Thank you for all that you do. I will be ordering the How Do I Know You booklet for our staff and families. The Gone From My Sight is in our admission binders and I reference it with my families at each social work visit.

God Bless you,
Stacie

Jacque Morgan - August 08 2019

My step-mother passed July 8th. She had been dealing with Dementia for quite a while. She went into emergency on June 30th and when I got home from being out of town I immediately went to the hospital. Because she couldn’t speak we had no idea what was going on. We found out her sodium levels were at 180. On July 3rd they spoke about hospice. I had her brought to my house and my sister and I cared for her until she passed. She had actually been breathing “fish out of water” since the 1st of July. We were so grateful to have your book “Gone from Sight” because she was exhibiting the same behaviors. God truly blessed us to be with her when she passed and our hospice team was absolutely wonderful. My sister lovingly dressed her and put makeup on her before the mortuary came to get her. She was 81 years young (6/25/38 – 7/8/19) and was a non-judgmental, kind, and loving step-mother. She will be missed.

Susan - August 08 2019

I have 20+ years experience as a direct care volunteer with hospice. That final tear can be a gift, if the family has a handkerchief, or I provide one, you can catch and save that tear,

Stacy - August 08 2019

Ms. Karnes, I cannot express how much you have helped, not only scores of people, but me and my family. My Nanny passed in January and for a year we (4 cousins, an Aunt, and myself) took care of her. We are all mostly mid forties and this was the first for most of us, a first of lots of things. A first being with a dying person, seeing each stage. Nanny had dementia and at night she had sun downers, we never knew what we would have to deal with when it was our turn. She would want up in the middle of the night and sometimes would throw things, look for things, then when she was not mobile she would scream all night. It was a hard time but also we made it also made so many memories that we will cherish forever. One night she told me old stories that I was able to write down. I can still see her sitting there telling me of her childhood. Your blue book was read so often then and was such a help. I would also read every comment people would make, just searching for help. After Nanny passed, I reread the blue book and could see each stage so easily, that at the time it was occurring could not see. You have a gift from God. I also want people out there that is going through the same things that time does pass so quickly and they are not alone. Thank you again for your books and teaching. I just gobble up every word. What a blessing it is to know that death is just the next stage of living and not something to hide from and not talk about. Even though she has been gone a year I still like to read about death and passing on.
Thank you again Ms. Karnes.
Stacy

Anne - August 08 2019

Thank you for this, Barbara. I was with my husband of forty years and happened to have a very knowledgable hospice team helping me. They turned me on to your booklets and that helped me to understand what was going on.
I hope you keep on writing so we can be educated on death and dying. I have given many of your booklets to people and they have been grateful for them.

Joanne Ciampi - August 08 2019

I thought your response was a good one, and I agree that the nurse should not have made that comment. Maybe she was new to hospice? I am happy to say that the nurses and social workers I work with do a great job of preparing families for their loved ones death.

Diana - August 08 2019

Dear Barbara,

You always have such wonderful thoughts and experiences that you so kindly share.

I will always be thankful to you when my Dad was in the dying process and I sent you an email. You responded immediately. I was in such pain and you were so helpful with your thoughts and words of knowledge and wisdom. I will be forever grateful.

Thank you for sharing,
xoxo
Diana

Sue Beabout - August 08 2019

Very good comments! I also had a grief attack about not being at my husband’s side when he died! He had Alz too. He was home, and I had given him his meds at 5 am. I knew he was close from the blue booklet. But I went upstairs to take a shower, etc and when I came down, he was gone!
Both my grief counselor and my spiritual care counselor told me that he didn’t want me there to protect me!
I am thankful to you, Barbara, for your wisdom and gentle explanations, and totally agree that they are more in the next world than ours. I’m thankful to my counselors as well!

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