Some thoughts on Dementia, Alzheimers and the End Stage of our Journey

“Deep into that darkness peering, long I stood there, wondering, fearing, doubting, dreaming dreams no mortal ever dared to dream before.” ~ Edgar Allan Poe

Recently, my friend Catherine contacted me to ask about her grandmother Phyllis, also known as Little Nana. Her Grandad has already passed over, and Little Nana is in a nursing home. This is what Catherine wrote:

My Nana is in a nursing home and has been for a while now. She can’t walk and so is hoisted in the air as they change her nappy which is degrading and I know she hates it. It makes her cry. She hates them showering her. She hates all of it.

Now dementia is taking over and she knows it. Some days she is great and others you can’t understand what she is saying. And she knows it. She keeps hiding/losing her hearing aid and so now she can’t hear at all. Sometimes she yells at people we can’t see, although once she told my mum (who I’m not close with) that Grandad was there but he wasn’t saying much. She tells me she is frightened but doesn’t know why. She says it a lot. I think she is frightened of dying, but without her hearing aid in, she can’t hear me tell her that there is nothing to be scared of, and that Grandad and others will be there to help her.

I sat on my bed tonight and cried as I told my Grandad that I hate seeing her like this. She is sad and defenceless. She’s scared and terribly sad. She gets confused and doesn’t understand what is going on. I asked Grandad to please take her peacefully in her sleep as it is too cruel to let her lose her mind first. It breaks my heart to see her like this, even in her moments of clarity she is still so sad.  Do you think he heard me? Do you think he understands that it breaks my heart to ask him to take her more than my heart breaks watching her slowly fade from her memory? Am I a bad person to ask this of him? I’m just so sad for her.

I asked Catherine for permission to share her letter, and my response. Many of us have been, or will be in this situation at some stage in our lives as carer or patient.

As a psychic, over time I have come to hold a different view of what happens to those experiencing dementia, or a loss of cognitive function and connection to the world as they age, or their health deteriorates. This is not just restricted to the elderly. What I am about to say can be experienced by someone during deep trauma or illness, and at the final stages of their life, no matter what their age.

Catherine, you are not a bad person to have these conflicted feelings about Little Nana. No-one likes to see their loved ones suffer, and it is a terrible feeling to be so powerless at the face of that suffering.

Your beloved grandmother is in the end stages of her life now. I know that she is losing the things that have defined her to herself, and to others; her independence, her ability to communicate, to problem solve, and to function in the way that she did before this decline.

I also understand this place from a personal perspective, having been there myself. Ten years ago, when my own health, motor skills and cognitive function were in serious decline, my husband was advised to place me in a nursing home, as it was expected that I would continue to deteriorate, requiring round-the-clock nursing care.

What was it like for me to be in that space? I often forgot where I lived, I couldn’t walk properly, I had lost the ability to read and write, and I could no longer function independently.  I was angry and confused. I felt helpless and depressed, and I raged against this nameless thing that was eating the life that I had known. I hated where I was too. I was frightened, and lonely and sad.

But not all the time.

Sometimes I was here. Right smack-bang in this life, and engaged with the world around me. At times I was miserable. At times I was more myself, and happy just to be in the moment.

Sometimes I was totally absorbed in a rich inner world, or a place that I accessed through my inner world. This place that gave me great comfort and great insight. It was a place that made total sense while I was there, but which I struggled to explain once I came back into my body. Even now it comforts me to think of it, although all I have left is a feeling – no images, no information, nothing concrete at all – and I retain the understanding that in that place I could travel backwards and forwards along the timeline of my life, and beyond my body’s current limits.

Little Nana is beginning to connect into that space too. There is much work that she can do from that space. Spiritual work, work for the growth of her soul. Much healing happens in this space; forgiveness of self and others, understanding of our life events. Little Nana’s physical body will become less and less important to her. She will become less distressed about herself and her situation. Engaging with this world will become less and less important too. She will live with one foot in this world, and one in the next.

Some souls move from this world to the next quickly, some slowly. Each of us has the experience that our soul most needs.

Some years ago I sat with my grandmother in hospital during a serious illness that nearly claimed her life.  For months she walked between two worlds – the third dimensional world of the living, and the world of those who have departed.

During that time, my grandmother, who was always the most polite and well-mannered person I know, would sometimes hurl abuse at the nursing staff, and swear with words I hadn’t realised she knew. She’d become violent, even as she became frail. She was not the person I’d known, and it was distressing to watch.

The truth was, she was very ill, and not in her right mind. What happened to her happens to many of us when we are ill, losing our cognitive function, or dying.

Sometimes she was in her own little world, and sometimes she was completely engaged with people we could not see.

Except that, as a psychic, I COULD see, and I came to understand that my grandmother wasn’t just going crazy. Something else was happening.

Many times, I watched my grandmother’s physical aura become dimmer, and the monitors would show a decrease in her vital signs.  Then my grandmother’s etheric aura – the soul’s vibration or essence – would gently disengage from her body’s centre and move a few feet upwards from the bed, so that it was still connected but only just.  At these times her face would light up and she would often speak to her mother, brother and other family and friends who had passed over.  A great calm would descend upon the room, and when her etheric aura settled back down into her body once more so that her aura was fully re-integrated, she would sleep deeply and peacefully.

My grandmother’s doctor and a number of the nurses would tell me that she was delirious but one gentle nurse held this old lady’s hand, and soothed her brow and told me she had seen this many times when someone was near death.  That they began to see and move into another world beyond this one, sometimes even experiencing great emotion as they made restitution or communicated with souls they had not seen for many years.  Always they talked about deceased people, never the living.  “Just help her make up her mind”, said the wise nurse.  “Let her know that it’s okay for her to go if she wants to.”

In the end my grandmother turned the corner and her health improved.  She later remembered nothing of her experiences, but also no longer feared death.  That was a significant shift for her.

So, how can we help our loved ones in this time of losing the self they have been in this lifetime?

We can look after their basic human needs, with compassion and kindness. We can offer comfort, and keep them safe. We can manage their pain and their medical conditions. We can keep loving them in the moment, for who they are now, as much as for who they have been. This is a time where, more than ever, our loved ones need our ongoing love and acceptance. Our being in this space helps them, and helps us too.

We can reassure them that they are safe, and that it is okay for them to leave us. We can tell them that we love them, and we can remind them that their life has mattered and that they have been of value. We can tell them about the things they have done that have shaped and helped others. We can share happy memories and tell them our latest news. We can share new moments of being together. We can hold their hands, brush their hair, rub soothing creams into their skin, eat a meal with them, and help nurse and comfort them when they move beyond conversation and into that space where we cannot follow.

Two extra things stand out for me. The first is that those suffering dementia, or who are asleep or comatose, can still hear us on some level.I know this because one of my clients who was in a coma for several months, remembers her brother and sister sitting with her, reading to her, holding her hand and talking to her. Telling her how much they loved her, even as she remained unresponsive. She has enough specific details for all of them to believe her to be telling the truth about that time.

I know this because I remember my husband holding my hand and reading to me and telling me silly stories, when I was too ill to walk or talk, and too ill to let him know that I knew he was there except by squeezing his hand. Even then I sometimes thought I was speaking or squeezing his hand but all of that just happened in my head and poor Ben had to keep going, not knowing that where I was, I was interacting with him…

The other thing that stands out for me is prayer. Last year I spoke at length with a young man who had crossed over after he had suffered a violent and traumatic death. The dead man’s mother had prayed for him, regularly and often in the time after his death, and the young man told me that he felt every one of those prayers and the prayers helped him come to a good place in himself and to be calm and resolved.

Prayers are heard by those who have crossed over. Please be assured of that.

We can never begin to understand all that happens within a person, in the place that we cannot reach. That is part of the enduring mystery of life.

One thing I do know.

Love matters. Kindness matters. Compassion matters.

It may not feel like these gifts are enough for your loved ones, when all you want to do is restore them to themselves and take their suffering away. So you see, your loved one is teaching you too. Giving you the opportunity to learn new things. Growing you in ways you might not have imagined.

All of life is a beautiful lesson, where we are sometimes the student, sometimes the teacher, and often both at once.

Keep loving. Be love. Be your loved one’s advocate, and their voice when they have none. If you cannot be with them, send them kind and loving thoughts. Talk to them in your head, which is, after all, a kind of prayer. Trust that there is a part of them that will hear you.

Love your family and friends, no matter what. They are not their illness. They are not their behaviour. They are not just what’s visible to you. They are souls, who will endure and keep shining, just as you are. So live from love. That’s how we connect. That’s the most important thing of all.