Anna Rosemary and Alzheimer’s Disease

hands

image from my cell phone camera

I work with dementia patients for my job. I would like to share this touching story with you that happened last year.
I have an old woman with dementia in the unit that has severe disorientation of time and place. I will refer to her here as Anna Rosemary.

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Anna Rosemary is a sweet lady. She cannot put her words together to make any sentences that make sense. She expresses emotion clearly through facial expression, gestures and the volume and tone of her voice.

If she is sad then she cries. If something amuses her, she laughs. When she sees me she always smiles.

Sometimes when i get to work she looks at me and says “thank God.” which means I have not seen you around, I am glad to see you back.

I stopped to talk with her one night. She likes to talk back and forth. She listens and she responds but her words do not come out the way she wants.

She says to me “I feel like I am cuckoo.” I was surprised at this because it had not occurred to me that she was aware that there was something wrong with her brain.

I repeated it back to her to make sure I had understood her. I said “Anna Rosemary. do you feel like you are cuckoo?”

She said “Yes. I am trying to figure myself out.” I was amazed at the clarity of this sentence. I must have taken a huge amount of effort for her to force her brain to put that sentence together. That shows how important it is for people to communicate their feelings to another person.

I gave her a hug and told her that her brain was being a bit cuckoo and I did not know why. I told her that I still knew her and loved her. I could still understand how she was feeling.

I told her that I feel a bit cuckoo sometimes too. Something happens with our brain sometimes. But that she was still Anna Rosemary.

She hugged me and said “it is hard” I asked her if she felt it was hard to put her words together. She hugged me tighter.

I said to her, “you still know love. You still have a beautiful heart and know what love is.”

“You don’t have to keep trying so hard right now to put the words together. You are full of love and I love you.

She and I stood there and I held her and kissed the top of her head.

Anna Rosemary hugged me back, and felt comforted, as did I.

She stopped worrying about putting her words together for a while and took my hand to walk with her into the living room area. We just walked together , holding hands for a while in silence.

Sometimes there is more love in silence than with a lot of talking. If she can still love people and needs to be loved then love itself must transcend the basic functions of the brain.
Love and the need to be loved is more powerful than the rational, cognitive parts of the brain.

Even when most of the brain is not functioning properly, love is still alive and thriving.

The brain is the ruling organ of the body. It controls every function in the body, including language processing and speech.

But even with all of those functions damaged, the capacity for love is in tact. There is something very special about our ability to love.

Rosalie Died from Dementia…Trigger Warning Death and Dying

tw-sign6 trigger warning

I kissed a dead body tonight.

No, it is not pleasant.

Yes, it is disturbing.

And yes, your feelings at this moment of either disgust and horror… or morbid curiosity… are perfectly normal.

I pulled down the sheet that was covering her face. People cover the faces of dead bodies, because looking at death is disturbing, sad and disconcerting to most everyone, even if they work in healthcare.

I looked at her face, to see if it had any resemblance to the face that had smiled at me so many times.

It did. It was her face… but now… the life had gone out of her.  My Rosalie. My dear Rosalie lying there motionless. No longer really there. It was just an empty shell that her spirited, affectionate soul used to reside in.

Her eyes were still open a little. No one had known they were supposed to close them. I was not there when she died, or I would have done it.

The nurse aides working in that unit must not have known about the eyes, although…the nurse who examined her to confirm the death, should have known. She just did not care enough about the dignity of the patient to take one minute to close the eyes.

The eyes must be closed, very gently, with your hand. You gently brush downward over them, with your open hand and they will usually close …for the last time. But if this is not done within the first fifteen minutes, then they get stuck open, which is very disturbing to the family.

I don’t know what it is.. about the open eyes of a dead body that is disturbing to people. Perhaps the fact that the eyes seem to be staring at some. Or perhaps the knowledge that those eyes are no longer attached to a functioning brain that can process what they see.

They say that the eyes are the windows to the soul. Therefor if there is no soul residing in the body, what are the eyes windows to? Something other wordly? Have the eyes now becomes windows to death itself?

Perhaps that is what people feel.  The eyes of a dead person that were once the “widows to the soul”  are now windows to death itself.  Most people do not want to look into those windows, for fear of what they might see.

No one wants to believe that death is a reality, except  for some. Some  who have contemplated taking their own lives. Some who have had close brushed with death. And some others…

Even those people who accept death as part of life,  would have trouble looking into the eyes of a dead person. Are we all afraid of what we might see?  What secrets do the dead eyes hold that we are afraid of?

Well, I did look into her eyes and saw……

Nothing much. Just no life…

No one had arranged her body position either. For those of you who do not know…hopefully most of you…the body must be arranged into position within a half hour or so, of the death. Usually the arms are placed across the chest, in a cross, with the hands near the shoulders, like a cross shape or an X.

You can also arrange the hands in a position that looks natural and comfortable. What you do not , and should not do, is just leave the body in a random position. It should be in a position that looks like they are sleeping peacefully. In a relaxed sleep position, a person has relaxed arms and hands.

Once rigamortis sets in, the body can no longer be moved into position, without damaging the limbs. It is best to take care of all of these things right away, but the nurse just did not bother to do it. There is a lack of dignity in that.

So, I kissed her and told her I loved her and said good bye. I was done with what I wanted to do and tried to leave the room. I can tolerate that much, but I do not like to watch the body zipped into the bag. I find it very disturbing.

Yes, I said disturbing. Me..the one who kissed the dead body today…has a line … a boundary…of what is too disturbing, even for me,

But yes, the moving of the body off the bed onto the stretcher and then the zipping of the bag…Yes…very disturbing.

But I went back. …I don’t know why, but I did.

I went back into the room and not only watched the body being removed from the bed…but I actually assisted him in lifting the body and moving it.  I wanted to ensure that she was treated with the highest level of dignity possible.

Thank goodness, he did not have the zipper bag, This particular company did not do that. I was lucky for that. He had a velvet cloth that he covered the body with. It fitted over the body and around the edges of the stretcher. I did not have to hear the zipping of the bag, which brings back bad memories to me, from an incident in my past.

There are more circumstances surrounding this whole thing, which were even more upsetting and in fact , somewhat infuriating to me. The nurses were very callous, lazy and insensitive to me about the situation surrounding her death and the guy coming in to claim her.

I will write that out in another post. I hope that people headed my trigger warning on this post and that no one read this that should not have. Feel free to leave comments or questions about death and dying, if you have anything I might be able to explain.

My Patient with Alzheimer’s disease / dementia is Afraid I will not Find my way Back to Her Again

My sweet lady, I will call her Rosalie, always cries when I leave work for the night. She also gets upset when I leave to go for my dinner break.

I always have known that she likes me there and that she is sad when I leave. But it was not until tonight that I finally realized just why it is so traumatizing for her. Now that I realize it, I can make it better for her.

A visiting nurse came to see Rosalie today. Rosalie took an instant shine to her and  felt very safe with her. The time came for the nurse to leave and poor Rosalie was holding her by her jacket and not letting go. She was crying and begging her to stay.

The nurse and I both tried to reassure Rosalie that she would come back to see her tomorrow. Rosalie said “no she won’t. She has to stay here.”

After the nurse left , I told Rosalie that she would be back tomorrow. Rosalie then said something that has never occurred to me before. She said “No she won’t. How will she find me again? How will she find her way back?”

That is when the realization came over me. Rosalie does not know where she is. She used to have a home and now she does not know how to get back. She does not know where that home is. She could not find it, even if we gave her the car keys and let her go.

She is so lost in time and space that she assumes that everyone else is too. The fact that the nurse happened to find Rosalie today, does not necessarily mean that the nurse can find her tomorrow.

Poor Rosalie feels so lost that she does not think anyone else knows where she is either. She does not understand that other people can find their way home and then back again to find her.

It was a great moment of realization to me. In her world, she is lost. She has no idea how she got to this place where she lives now. As far as she can tell , it is a lost place that no one can find.

Her family does not come to see her, so she must think they are lost and cannot find her too.

So. when she is crying at the end of my shift when I leave, she is truly afraid that I will not be able to find my way back to see her again.

So then, I explained to Rosalie that the nurse and I were good with finding our way home and back to her again. I told her that the nurse had found her way here today on purpose and could find her way home.

I explained to her that I had found my way to see her many times. It was not an accident that I ended up here. I assured her that I know how to get to where she is and that I would never lose my way to her.

This seemed to help.  From now on, I will remind her that I know how to get to where she is.

I will not lose her. I love her very much and will find my way back to her every time.

It reminds me that we all live in different realities. Our experiences form our perceptions and our feelings.

When we try to understand people by looking at their situation from our reality, we cannot truly have full compassion for them.

In order to understand, we have to listen and see that their world is different from ours. That includes the world they perceive in their mind. It is the only reality they know.

People who have been abused, people with PTSD, people with mental disabilities and people who are very poor have a very different reality than others.

It is true for many situations including people who have sick children, people who live with chronic pain, eating disorders, alcoholism and addiction.

In order to have true compassion we have to know that others see and feel things differently than we do.

Namaste,

Annie

Our Capacity for Love

I work with dementia patients for my job. I would like to share this touching story with you that happened last year.

I have an old woman with dementia in the unit that has severe disorientation of time and place. I will refer to her here as Anna Rosemary.

Anna Rosemary is a sweet lady. She cannot put her words together to make any sentences that make sense. She expresses emotion clearly through facial expression, gestures and the volume and tone of her voice.

If she is sad then she cries. If something amuses her, she laughs. When she sees me she always smiles.

Sometimes when i get to work she looks at me and says “thank God.” which means I have not seen you around, I am glad to see you back.

I stopped to talk with her one night. She likes to talk back and forth. She listens and she responds but her words do not come out the way she wants.

She says to me “I feel like I am cuckoo.” I was surprised at this because it had not occurred to me that she was aware that there was something wrong with her brain.

I repeated it back to her to make sure I had understood her. I said “Anna Rosemary. do you feel like you are cuckoo?”

She said “Yes. I am trying to figure myself out.” I was amazed at the clarity of this sentence. I must have taken a huge amount of effort for her to force her brain to put that sentence together. That shows how important it is for people to communicate their feelings to another person.

I gave her a hug and told her that her brain was being a bit cuckoo and I did not know why. I told her that I still knew her and loved her. I could still understand how she was feeling.

I told her that I feel a bit cuckoo sometimes too. Something happens with our brain sometimes. But that she was still Anna Rosemary.

She hugged me and said “it is hard” I asked her if she felt it was hard to put her words together. She hugged me tighter.

I said to her, “you still know love. You still have a beautiful heart and know what love is.”

“You don’t have to keep trying so hard right now to put the words together. You are full of love and I love you.”

She and I stood there and I held her and kissed the top of her head.

Anna Rosemary hugged me back, and felt comforted, as did I.

She stopped worrying about putting her words together for a while and took my hand to walk with her into the living room area. We just walked together , holding hands for a while in silence.

Sometimes there is more love in silence than with a lot of talking. If she can still love people and needs to be loved then love itself must transcend the basic functions of the brain.

Love and the need to be loved is more powerful than the rational, cognitive parts of the brain.

Even when most of the brain is not functioning properly, love is still alive and thriving.

The brain is the ruling organ of the body. It controls every function in the body, including language processing and speech.

But even with all of those functions damaged, the capacity for love is in tact. There is something very special about our ability to love.

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