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

Image from the Dark Writer

Image from the Dark Writer

“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.

Image from The DailyPedia

Image from The DailyPedia

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.

Image from Pane Andov

Image from Pane Andov

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.

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

  1. A beautiful post, most thoughtfully conceived. Never feel guilty for the feelings that we have, and know that all our wishes, dreams and hopes, as well as our worries and fears are known, understood and soothed as much as possible. Spirit is around us all the time, and never judge us, the way we judge ourselves, so just relax and feel what you feel. Your emotions are perfectly valid, and after the fear comes the peace.

    Patients with dementia do feel humiliation, just as everyone does, and that may be part of their growth. If they have been very independent, or very nurturing, it may be part of their soul’s choice to experience being cared for, to learn to accept care from others. But often, patients will come out into a child-like happiness which is like the last rays of sunshine at the end of a long day.

    Prayers are always heard. Be comforted. xxx 😀

    • Fran, agree with what you’re saying about growth. I know that the experience of being dependent has been part of my own journey. I’ve been told I had a past life as a ‘walk-in’ (which I’d never heard of until then) to the body of a 90-something stroke victim. A number of people have commented on my ‘fierce independence’ in this lifetime, and I was told this is a reaction to this walk-in experience. Apparently I chose/accepted this assignment because I had never been old enough in any of my lives to be that helpless. A part of every soul’s education, to be the helper as well as the helped … apparently a lesson I’m still integrating 🙂

      • Looks like I can only reply here, not below 🙂

        Isn’t life interesting? Makes you want to see the syllabus 😀

        Just wanted to add a PS that I realized Nicole is both the helper and the helped in this life, perhaps almost equally. That must be unusual …

  2. Beautiful, poignant and resonates deeply as my mother-in-law’s body declines with Alzheimer’s. I have been here with my dad, and I am convinced he was aware of me to the end. In fact I read to him from his favorite author through his last night, telling stories in between about all the magnificent things he had done in his life. Live in love…and yet, one misses in love too.

  3. Thank you! You help so many Nicole. I am truly greatful, you have touched and taught me so much. I hope you know how important and apreciated your work is to many. xo

  4. Are we still meant to love the soul when the person was a toxic self centered cow (for want of a more appropriate word)? Don’t know if I can do that 😕

  5. Reblogged this on katywaltersreviews and commented:
    I too am caring for my mother who has vascular dementia and Alzheimers. They say it is advanced but we still have precious moments together. Some people ask me ask how can I bear it. to which I reply that every moment she is alive is precious to me. it is the moment that counts. I visit a lot and have her home with me as well for the day or evening. I do her hair and make sure she has pretty clothes in bright colours which she loves. I listen to her hallucinations and share them with her. I enter her world and we do have some fun at times. I never correct a wrong memory or remind, but just listen and then share. Tonight we had egg and chips and baked beans and oh yes, her glass of wine. . Tonight as I left her at the residential home she was carrying some knitting I had managed to get her to do, she was so happy. maybe she will knit some more who knows, but what does matter is she was delighted and happy in those moments. When I look at her, I do not see pain, or grief, I know I am losing her and it is something I have to over come for her sake. That way is to pick up those dropped stitches without her knowing. Yes there is some crying in the shower, and a host of things I will not mention; suffice to say, in trying to ease her world I eased mine. The only heart breaking time was when my sister passed away some months ago. Although my mother was not aware of it, I just sat with her and shared her presence as I grieved for my sister.
    It is hard and it does break your heart at times,but there are ways to cope as I said.

    May God protect you and your loved one.

  6. Thank you, Ms Nicole, for such beautiful words. This means so much. I even understand a little more than before, about my Nana and about you. . Amazingly, I am lost for words but filled with gratitude and a sense of comfort and calm.
    Thank you! Much love and blessings to you and your soul ♥ xxx ♥ ♥ xxx ♥

  7. Your writing has definitely shifted my perspective and given me much to ponder about. Thatnk you for todays wisdom; it will stay with me forever X

  8. Beautiful words to help explain what happens.
    I have two vivid memories (some of the rare few vivid memories I have) with my beloved Nana, who in the end had severe Alzheimer’s. The first is watching her having a very animated conversation (in Sicilian) with her father, tears were involved and it felt like she was ready to go home and he was allaying her fears. The second is the following day holding my Nana’s hand, stroking it and telling her it was okay to go, we’d muddle through and it was okay, she had done enough for us all and she was loved. She passed shortly after as I continued to hold her hand. It was one of the most amazing, saddening and profound experiences I have been a part of.

    Thank you for talking about it, as for our society, it is still one of the few areas that are not openly discussed and yet we all are touched by it. xo

  9. Dear Nicole,
    I noticed you just don’t have the time to respond to all the comments. I just wish you would contact me @ kathryn.newsyneighbor@gmail.com. I publish a magazine in Alberta, Canada and I would love to print some of your blogs!! You are an inspiration to many and your illness is something which should be shared – we have ticks in our area too.
    I don’t even remember how I found your site but I have found that I look forward to seeing Cauldrons and Cupcakes when I sit in front of my computer each day. You talk about it being fall there and just now we are starting our Spring. We are worlds away, you talk about snakes on your roof and I have squirrels and jays in my yard – I cannot even image a snake in my yard. To share your blogs in my magazine would be awesome. I hope you see and respond to my request. You may view my magazine at http://www.thenewsyneighbour.com
    Have a wonderful evening – oh, but it is probably morning there!

  10. What an amazing post! It swelled the compassion up fully in my heart as a story of such pure wisdom and insight. Thank you for sending this to us!!

  11. Great post Nicole. I remember when I flat-lined twice, in ICU for a week, and in/out of conscious I can recall conversations and words spoken and unspoken. I ‘knew’ who was in the room and I could feel their loving. Honour the moments and allow the love in your heart to comfort you too.

  12. Dear Nicole, another beatiful post. I work in an acute health setting, seeing many people severely ill after having suffered a stroke or in a delirium. More and more I was wondering “where they were”. I was so hoping their mind would wander of to a better place. Your post helped me a lot. Also saw a part of a documentary on delirium. The passing away percentage post delirium is very high, even in the years following the delirium. They are working hard to tackle and avoid a delirium in hospitals. But maybe it’s an issue on another level. It goes way beyond our scientific approach. If only everyone could see it that way…. One day I hope, one day….. In the meantime I am happy to read your words as you put words to my thoughts. Thank you again. Next time when I see a patient in this state I don’t have to doubt my thoughts. I know they are real. X

  13. Oh Nicole, your post comes to me with such synchronicity as always. Thank you for changing the way I am taking care of my Mom. Your wisdom shared again, changes my life for the better. Thank you for being you, for helping us all along this lifetime by sharing your experiences and your knowledge. I am blessed to have connected with you. Thank you xo

  14. Thank you for sharing this beautiful account Nicole – again I find it comforting to know that prayers are heard by those who have crossed over. Also good to know that memories shared with loved ones in their transitional space uplift their souls. xox

  15. So wonderful as always learnt a lot …
    Been at the half house for a week no internet …really loving catching up .
    Cherryx

  16. Pingback: Supporting Your Loved One at the End Stage of Life | Cauldrons and Cupcakes

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