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My very active and dignified father has had two strokes and is in a coma. My mother, who is a very self-absorbed individual, decided that it would be fun to take pictures of my dad to show him when he is better so we all can laugh. I was appalled and refused to use my cell phone in ICU to do so. My younger (44) brother did, however. My older brother, who is one of my father's physicians, does not know about this yet but will not approve either. I tried to stop the incident but could not. I feel that my father's privacy has been invaded and am very upset for him. He will not find pictures of himself in ICU on life support amusing at all if he does come out of the coma and can understand. My older sister made no effort to stop mother, either. I think the pictures should be destroyed and would like to know if anyone thinks I am over-reacting. These pictures were not taken to comfort someone. They were taken to use later for people to laugh at with my father ( who is 84 and will not be amused). Thank you for your help.

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Maybe that's where the 'weeping willow' came from.. hmmmm
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I had a side thought to my post about how I use video and photography in hospitals or other difficult situations. For me, it serves a purpose to document to myself, to witness that I hung in there and stood by my mother, no matter what. I may never show these images to anyone nor play the videos back, but I know what I know and have proof of what we went through.

I've heard too many stories, and experienced first hand, how caregivers are trampled on, shoved aside, cut back, blamed, taken advantage of, called names...Well, if only "they" knew how hard it really was, the sacrifices. These people don't want to hear how hard it is. They would avert their eyes if I dragged out these photos and videos.

But it is important to me, anyway, to have a witness to what it took. When I was just 6 months in to sole caregiving (seemed like an eternity at the time!), my storyteller friend Laura Simms...well, she knows a lot. She works with boy soldiers, refugee orphans. She teaches storytelling to Romanian gypsies, she worked with the NYC school district after 9/11.

She perhaps got tired of listening to me whine and emailed me a story to post on her website. "The Tree that Absorbed Tears." In the story a young woman was newly married. After a short while, the woman's mother came to visit, and the new wife cried to her mother that her husband was cruel and beat her.

Given the culture, there was no way for the wife to leave her husband, nor for the mother to help her. But the mother gave her this advice. "Go to the forest and find a tree. When you can get away, visit this tree and cry into its branches, tell the tree your troubles."

When the mother visited again months later, her daughter looked more at ease and not so distressed. "Has your husband stopped beating you?" No, replied the daughter. She brought her mother to see the tree, the tree that absorbed her tears. And it was dead.

As soon as I posted the story to the laura simms website, Laura threw the story out for discussion to the Healing Storytellers email list. The dead tree drove half the storytellers crazy. If they told the story themselves, they'd change it. The tree would turn into compost, daffodils would bloom nourished by the daughter's tears. There would be birds in the branches and a rainbow too.

This drove the others of us mad. "You are taking away the value of the woman's suffering. The tree was witness to the reality of her pain. Her suffering was so great, it hurt not only herself, but killed the tree as well! She has validation that what she suffered was wrong!" And so forth.

Laura mentioned that there was a tribe in Africa where every one of their folk stories ended "and everybody died." Oh, Laura is the adoptive mother of Ishmael Baeh, author of "A Long Way Gone, Memories of a Boy Soldier."
somewhere on the site is the tree story.

So back to photography and video of difficult situations. Although there ARE people who KNOW what we are going through, most don't want to hear it, witness, be reminded. Certainly my deadbeat sisters don't want to and actually relish that I am suffering. Really. The photographs are validation to myself that this is hard stuff I'm facing, and I'm doing it. I have proof on little SD cards.
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From a third-party point of view, mine, the situation sounds pretty dire and your mother doesn't seem ready to accept that your father is likely going to pass away soon and/or that he'd likely not have the cognitive ability to "laugh" at the situation afterwards. Maybe she can't accept "taking photos of him dying," but can "for a hoot."

I think photos of the dying or deceased are appropriate for many. My father takes photos of us and wants photos of us at the grave site of my mother. I find it uncomfortable, but he gets comfort from it. And I have looked at the photos later myself, because I do miss my mom at times. It's a different feeling than looking at old photos when she's fine and healthy. I guess the graveside photos are a reminder of closure.

Showing your concern over this as you do, I think your father is lucky.
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naheaton has the right idea. I take photos/videos of my mom in the hospital all the time now, mostly when she is conscious that I am doing it. I share them immediately with her, and delete the dorky ones. Many are posted on my Facebook page as "Mom's ER Adventure!"

I show her the photos on the back of the camera and explain what they are doing to her. There are many photos of Mom and nurses mugging for the camera, with little devil horns, too. I also take video, which I can also show on the back of the camera.

However, for the benefit of doctors and nurses, I have also filmed Mom's delirious/combative episodes compared to her usual cheery self. I got so tired of repeatedly acting out Mom's (occasional) reactive behavior (in front of Mom!) for every new ER doctor/nurse (seems like we got a new one every hour!) When they saw video of her congenial self, they rallied more quickly to help her. Mom was someone worth saving. Usually in less than a half hour, Mom rallied.

I have not shown Mom her stressed out behavior videos or photos. Oh, to help with the never ending stream of CNAs and nurses and doctors, I made up a sheet with a few photos. In one column was a list of her Stressed out Behavior, in the other column, her usual behavior. You don't know how this helped connect the staff to mom and bring in new people quickly. It was very effective. I had several sheets printed out and made sure that new staff members had read it. They scanned it and put it in her records also.

One of the Alzheimer's Project videos follows a couple over some time. The husband had Alzheimer's. The cameras were rolling in the nursing home as a few family members and one nurse stood by his bedside. They filmed the exact moment he died, and the wife falling apart. Do you think the wife now regrets that? I don't think so. I think it is a testament to the

A few other people on this board use photos and videos a lot. I wouldn't go so far as to say using film is a way to make caregiving into an art form (my friends say that). However, using photography so much in a journalistic way as well as a SMILE way...this puts my frame of mind a step back from the situation. I am also something ELSE rather than a stuck caregiver. If I have my camera, my mind has a "where's the charm in this situation" mode. This intention actually puts a LOT of charm in our lives, and we have many moments worth sharing with the world. The photography stuff also helps Mom pass the time in the ER and gives her something to focus on rather than staring at ceiling. It does turn it into an adventure that we're documenting.

However, the original post coma situation had an obviously bad effect all around. This was a possible death situation, and at that point was no laughing matter. If it were Mom lying there, I would have taken photos in a more journalistic way, showing caring nurses, etc. IF THEY WOULD LET ME.
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If this is a coping measure for your mother, because she's scared he might die, then taking a picture isn't that big of a deal really. But if she carries on and on and keeps wanting to take a pictures of him, then there is something else going on I think. Anyway, shouldn't she be in the picture with him? I mean if my husband was in a coma and might die, I think I'd want one last picture of the two of us. Maybe kissing his forehead, or touching his face. Something to look back at and remember after he was gone.
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No, you are not overreacting! I'm appalled. How would your mother like to have pictures of her in such a conditon? I do hope that you can talk her down from this strange "high." Is this unusual behavior for her? Is their marriage basically good? Maybe this is an emotional twist, like someone laughing during grief, a reflex of sorts. I like to give her the benefit of thinking she may be in shock. Otherwise, it's hard to understand her "humor." Bless you for sticking up for your dad.
Carol
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I think we all feel your pain and sense of betrayal. For those of us who have been mocked, discounted or treated with less than respect know that it is a bad feeling indeed, so you are completely justified in your feelings. I just hope that you will give it some cool down time - speaking in haste or anger can hurt rather than help. Just focus on your relationship with your dad at present, and try to let it slide for now. We all have to bite our tongues from time to time, especially with those who do not think about others feelings.

Everyone handles stress and illness differently. What might be distressing and "gallow humor" to you, may be their way of hoping he will "get better and we can all laugh". Each to their own. Ask your brother what he thinks. As a doctor he has probably seem alot of different coping behaviors, and might have some insight. Certainly none of us on this board can really tell not knowing your family or the situtation.

Seeing someone in ICU is usually not a good event. But try for now to get through what is going on with your dad, and put it in perspective later. When tempers run high when people are sick it is always better to give the benefit of a doubt and keep the family together during tough times. When my mom was in the ICU many years ago on New Years we all had a toast with apple juice and took pictures (with the nurses blessing). To this day when I look at the pictures in the album I see that we weren't being frivolous, or silly - and it is a lasting memory of what we went through. My mom recovered, and actually did get a kick out of the pictures later.

Hang in there, be kind to yourself.
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