Spiritual Aspects of Dementia

[justsosad]

For those of you who are spiritual, I'm just wondering if any of you have thoughts which lend a spiritual perspective to going through dementia. Are there any spiritual lessons to be gained through the journey of either the care giver or the victim?

Or do you have any spiritual perspectives related to any aspect of dementia which helps give you strength, or to make sense of the whole cruel dementia experience?

As a spiritual person, I try to look for the spiritual meaning, or the spiritual lessons or purpose behind everything in life, but I'm having a very hard time doing that in this situation (watching my wonderful, amazing mother whom I adore being destroyed by dementia, and assuming the role of her full time caregiver). This disease is so horrendously cruel. My mother was a kind, generous, selfless, gentle, positive, GOOD person who worked so hard and made so many sacrifices all her life, without ever giving it a second thought, nor a word of complaint, and made it all look so effortless, always with a big smile and happy disposition. SO admirable all my life! She inspired all of the very best of what there is in me. How could this happen to HER?! She does not DESERVE this! These are the questions I am tormented by every day, and at times it comes close to testing my faith. I so desperately want to be able to see and understand some deeper spiritual meaning in all this, so at least I can try to come to peace with it. But I just havent been able to find the spiritual perspectives I am seeking. If anyone has anything to offer, please share your thoughts, insights or perspectives.

 

[lilypad]

Take heart

Let me tell you what happened to me 40 plus years ago. I was lying in bed next to my husband settling down to sleep but still very much awake, when a beautiful voice spoke to me. I had the knowledge but this was not spoken ,that it was Gabriel. he/she told me that the gospels were true and that the nature of God was that he had put all his being into creating life on earth. That he was a part of us as we were a part of Him. Therefore every experience we had he shared; that there was a plan and that evrything was going according to plan. I questioned this regarding the state of Africa and was told that it caused Him a great sadness. I was then given pointers that I would recognised through my life to prove what was said was true. If you would like to contact me I am willling to tell you more. So yes accidents happen which is as distressing to Him as to us all but the end result will be worth all the tribulations

 

[missingmom]

great resource

For those of you who are spiritual, I'm just wondering if any of you have thoughts which lend a spiritual perspective to going through dementia. Are there any spiritual lessons to be gained through the journey of either the care giver or the victim?

Or do you have any spiritual perspectives related to any aspect of dementia which helps give you strength, or to make sense of the whole cruel dementia experience?

As a spiritual person, I try to look for the spiritual meaning, or the spiritual lessons or purpose behind everything in life, but I'm having a very hard time doing that in this situation (watching my wonderful, amazing mother whom I adore being destroyed by dementia, and assuming the role of her full time caregiver). This disease is so horrendously cruel. My mother was a kind, generous, selfless, gentle, positive, GOOD person who worked so hard and made so many sacrifices all her life, without ever giving it a second thought, nor a word of complaint, and made it all look so effortless, always with a big smile and happy disposition. SO admirable all my life! She inspired all of the very best of what there is in me. How could this happen to HER?! She does not DESERVE this! These are the questions I am tormented by every day, and at times it comes close to testing my faith. I so desperately want to be able to see and understand some deeper spiritual meaning in all this, so at least I can try to come to peace with it. But I just havent been able to find the spiritual perspectives I am seeking. If anyone has anything to offer, please share your thoughts, insights or perspectives.

I have found a book that has been immensely helpful in this area. Embracing Dementia: A Call To Love by Ellen Marie Edmonds.

 

[justsosad]

I have found a book that has been immensely helpful in this area. Embracing Dementia: A Call To Love by Ellen Marie Edmonds.

Thank you for that recommendation - I looked it up on Amazon and am going to order. Thanks again.

 

[justsosad]

Let me tell you what happened to me 40 plus years ago. I was lying in bed next to my husband settling down to sleep but still very much awake, when a beautiful voice spoke to me. I had the knowledge but this was not spoken ,that it was Gabriel. he/she told me that the gospels were true and that the nature of God was that he had put all his being into creating life on earth. That he was a part of us as we were a part of Him. Therefore every experience we had he shared; that there was a plan and that evrything was going according to plan. I questioned this regarding the state of Africa and was told that it caused Him a great sadness. I was then given pointers that I would recognised through my life to prove what was said was true. If you would like to contact me I am willling to tell you more. So yes accidents happen which is as distressing to Him as to us all but the end result will be worth all the tribulations

Thank you, I would like to hear more about this. I will PM you.

 

[Miss Merlot]

No.

I am an atheist (anti-theist) and humanist.

I don't feel there is any spiritual dimension at all to my current situation.

What I have perhaps learned is that I have far more reserves of care and compassion that I would never have otherwise thought possible, and that in and of itself has value.

But no, beyond that further on a spiritual plain it does not go.

 

[Big Effort]

I am certainly not religious in any sense.
Dealing with Alzheimers has put my back to the wall in several ways. Do I think there is a spiritual benefit/lession/point in the Dementia Journey?
Astonishingly, well it is me who is astonished, dealing with dementia has made me really look into my beliefs - I am still an athiest, but I am gaining such insight into my life process that it is positively exciting.
For my psychology degree, my thesis was about moral competence. The exciting discovery I made was that moral competence is a learned skill. People with few opportunities to flex their moral competence muscles remain with the morals of a four to ten year old. [You shout at me and I'll shout back at you etc].
I am currently working on a private theory that Spiritual IQ is also something that we can learn and develop. For me it certainly isn't inborn. But having my back to an Alzheimers Wall has forced me to develop areas of my brain that were dormant, one of those being the Spiritual Domain. And while I have no time for religion, I certainly like what I find within me.

One person who does have amazing breadth of knowledge in the spiritual domain is Deepak Chopra, and his book "How to know god" was inspirational. He talks of the seven levels of god, and I finally understood why religion and god as flaunted in the two dominant mono-thetic religions does nothing for me. Christianity and Islam cover just the first two levels of god...... but it is levels 3 to 7 that are mind-blowing. And it is here where I am doing all my exploration.

So is there a lesson/point/spiritual meaning in walking the Dementia Journey. Yes. Yes. Yes. And I am glad I am on it.

Thank you for asking this question. Do post your views and findings. If we are to develop our Spiritual IQ, dementia is the perfect testing ground!

By the way, Mum has Alzhiemers, 86, and takes comfort in Christian beliefs. Alzheimers hasn't taken that away from her yet. It is a comfort to her.

Keep posting and keep questioning. All the best, BE

 

[justsosad]

I too am not "religious". But over the years I have become a very spiritual person. Big difference between being religious and being spiritual in my view.

Was baptized Catholic but have never been a church goer, and I disagree with a lot of the views of the church. Yet, I have become a very spiritual person, not through teachings of the church. And not because I was "seeking". But because, from the time of early adulthood, through all the years to where I am now (early 40s), there have been experiences in my life that stunned me into realizing that there is much more to our existence than meets the eye. Amazing, fascinating things have occurred in my life over the years that basically woke me up and awakened the spiritual being within me, quite by accident.

Over the years, I came to discover nothing occurs by accident in life, and everything ultimaitely seems to have a purpose - even the very worst of what we've gone through. Usually you cant see it at the time, but years later you'll look back and say, "okay, I see what that had to happen. I see why things had to turn out that way". So i've gotten into the habit at looking at every struggle I go through, trying to identify the purpose, or lesson, or deeper meaning to come from it - in other words, what is it that makes this experience or hardship necessary in my personal development or life's journey? With experience, I've become pretty good at being able to stand back and take something really valuable or positive out of every situation, no matter how difficult, so that I'm able to say, 'Yes, I really needed to go through that experience in order to get somewhere better.'

But watching my mom's life being stolen from her by dementia... watching her being ravaged by this thing.... This is the one time in my life where I just cant see the point. I can't find the good. All I see is heartbreak, tragedy, cruelty and suffering. I cant find any beauty in this at all. Sure, I'm discovering strength in myself I never knew I had. Sure, I have become stronger and tougher than I ever thought I was capable of. Whoopie for me. What about her??? How in the world can I look at her suffering and believe that there is anything good to come out of this for her? I wish I could look at this and understand that it is a necessary part of her spiritual journey, but I'm just not making that connection. How is dementia anything other than the most cruel punishment for her? And she didn't do anything to deserve it!!! I just wish I had some insight that would allow me to look at what she is suffering though, and have some spiritual understanding of it, or see some spiritual purpose to it. Otherwise this just looks to me like a hideously cruel and very undeserving, undignified end to a life well lived (but filled with hard work). My experience thus far in life has taught me that there is ALWAYS deeper meaning and purpose beneath every bad situation. But I just cant see it in her situation. And that is very troubling to me. Sorry for the ramble.... again, any other thoughts or insights anyone has are appreciated, whether you believe there is a spiritual purpose to everything or not, whether you are spiritual in nature or not. Just trying to make sense of this all. I guess it all comes down to me needing to have an answer to one powerful question, What did my mother ever do to deserve this and why is it that she has to suffer through something so hideous??? Everyone's life has to come to an end at some point, I get that. But this is an exceptionally cruel and punishing way for it to happen. And again, thanks to all of you who have commented.

 

[gringo]

I too was brought up a catholic, but now have no faith. It seems to me that there is an element of, first make sure you know what you’re looking for, then make sure you find it about all this.
Faced with this dreadful disease and it’s ravages, I would dearly love to believe in something. Come with me into the CH. and see the wreckage of humanity, and tell me what possible purpose is served by all this.

 

[FifiMo]

Hiya Justsosad,

It is interesting that your beliefs and spirituality are being challenged due to your mum's dementia. I have a few things to offer you, based on my own experiences, that you can perhaps ponder.

My sisters and I often discussed my mother's dementia and her ending up having that disease which would dictate her final journey here on earth. We noted that my mother had learned that which many advocate that we should do and that is to live in the present moment. Her deteriorating skills meant that she no longer considered the future and her memory problems stopped her living like most of us do, by reference to the past. For her, every day was new. Every day was as though she was experiencing things for the first time. Occasionally she would remember someone else's name but on the whole she lived in the moment and even then sometimes in a world that was beyond our reach. It wasn't always good, she suffered from hallucinations but even them her lack of memory of the previous days events often served as a kindness. Allowing her periods of relief before the hallucinations started again.

So, in a way, the suffering of the dementia was often ours and.not hers. So is there a lesson there? Are you seeing your mum's suffering only from your perspective? Yes it is a horrible illness, but is that judgement being made by you on the basis of your suffering and what you know your mum has lost. Is your mum aware of all these horrible things as you are, or does she live each day within the bounds of the skills that she still has? Is there a lesson for us which might be to stop and see things from other people's perspective. Is the lesson maybe to show you how to live for the present moment. To learn that there can still be joy without us having to always have our reference point in the past? To get there and join her, you will have to shed all your preconceptions, your anger, and open your soul to share that present moment with her, in the pure innocence of the moment.

There are other lessons too. How about trust. Being so vulnerable that your whole existence is dependent upon you putting your trust in others to care for you and keep you safe. Can you contemplate you abandoning all your your protections and laying yourself open to whatever may be. You can experience this if you are brave enough to try it out. Take a blanket and go sit in meditation outdoors one night. If you are near an area that is out in the country, away, from all the trappings of home such as street lights etc this is even better. Sit on the ground with your blanket around you and meditate. Experience how your senses all become intensified, how distrusting you are about your safety. Become, if you can, at one with your surroundings. Become part of nature again. Sit as an equal with all the other living things around you. That is how trusting your mum has to be and she is giving you the lip chance to learn from her experiences.

To be continued, if you wish me to, or just tell me to stop here....

Fiona

 

[21citrouilles]

I'm a spiritual person, and my faith too has been severely shaken by this. I feel the same as you.

Fiona has offered us wise words as always.

 

[gringo]

Fiona, my experience is a little different to yours.
My wife knows she wants to get out, to go home. Home I think means somewhere where she was happy and safe, where we lived a different life together.
There is a notice inside the carer’s office. ”They won’t remember what you did, but they will remember that you made them happy”. In other words, they recognise that there is a there is a residual memory, and the converse is true , they will remember something that made them unhappy.
Every day, I visit, I see people who are so distressed, who don’t know what has happened to them, but are obviously very unhappy. The carers do a remarkable job, trying to bring comfort, but some cannot be reached, and all they can do is see that their physical needs are attended to.
Of course much of the unhappiness is ours as we observe the deterioration of our loved ones. But it’s still suffering for all that.
Because we know that there is no hope of recovery, that death is the only release, I think we carers, for partners with dementia, are marked as others are not.
I just long for the time when the suffering for both of us will be over.

 

[Chemmy]

I'm not religious or spiritual, (I come from a science background) and I found that I viewed Mum's decline more as a machine getting old and worn out with more and more of the parts failing over time.

My car is playing up at the moment. Sometimes the heater works, sometimes it doesn't. Some days it starts first time, others it takes about forty turns of the key. Sometimes the mechanic can fix things, sometimes he can't.

So I'm with you, gringo, I find very little positive in getting dementia or indeed other progressive illnesses. I may have gained positive insight about myself from looking after Mum, but I personally find that any suggestion that her illness is part of a bigger plan frankly quite horrific. How that gives anyone comfort is beyond me.

 

[SausagesBananas]

Am with gringo on this too.

I too was brought up a catholic, but now have no faith. It seems to me that there is an element of, first make sure you know what you’re looking for, then make sure you find it about all this.
Faced with this dreadful disease and it’s ravages, I would dearly love to believe in something. Come with me into the CH. and see the wreckage of humanity, and tell me what possible purpose is served by all this.

 

[justsosad]

Fiona

To be continued, if you wish me to, or just tell me to stop here....

Fiona

Hiya Justsosad,

So, in a way, the suffering of the dementia was often ours and.not hers. So is there a lesson there? Are you seeing your mum's suffering only from your perspective? Yes it is a horrible illness, but is that judgement being made by you on the basis of your suffering and what you know your mum has lost. Is your mum aware of all these horrible things as you are, or does she live each day within the bounds of the skills that she still has? Is there a lesson for us which might be to stop and see things from other people's perspective. Is the lesson maybe to show you how to live for the present moment. To learn that there can still be joy without us having to always have our reference point in the past? To get there and join her, you will have to shed all your preconceptions, your anger, and open your soul to share that present moment with her, in the pure innocence of the moment....

To be continued, if you wish me to, or just tell me to stop here....

Fiona

Hi Fiona,

YES, please DO continue. And thank you for taking the time to share your thoughts and perspectives. I would really love to read any other insights you have to share. Even if I'm not sure that all of what you have said can be applied in my situation, I find what you say to be very interesting and worth contemplating. At the very least, its inspiring to see the perspective you were able to take away from your experience with you mother's dementia. In my case, I WISH I could say that the suffering of dementia is mine and not my mom's. That would make this SO much easier to bare, if all I had to deal with was my own pain, and not her emotional distress as well. But sadly, part of what I am struggling with is the pain and distress (both emotional and physical) my mom is experiencing as she progresses deeper and deeper into the final stages of dementia. She is in advanced dementia, and yet, she is very well aware of her situation. I don't know if this is typical among dementia sufferers (she does not have Alzhiemers - the cause of her dementia remains somewhat of a mystery, but the latest theory is that it *could* be an autoimmune disease, so maybe that makes a difference...). She cries frequently, which is of course very difficult for me to see, especially since it is so unlike the person she has always been. My mom was always incredibly strong; she'd been through much in her life, yet I'd only seen her cry twice in 40 years. Once when our beloved dog passed away when I was around 18, and once when I was 3 and she had to scoop me up in the middle of the night as she fled the house from an abusive husband; she wept as she cradled me in her arms on the front lawn, waiting for the police to arrive. Those were the only times I ever saw her weep. But now she weeps regularly, and when I ask why, she says "Because of everything that is going on" (referring to her current state) or "I want things to go back to the way they used to be", or "This is terrible, just terrible! I've lost my mind. Look what I;ve become". Sometimes she'll wander the house (where she's lived for a decade) looking so lost and frightened, saying, "I dont know where I am.... I dont know what I'm doing". I hug her and say, "Its ok mom", and she'll begin to weep, shaking her head, sobbing and saying, "No its not, its not okay..." and then she will just break down and weep. So if my mom was contentedly living in the present moment, if there WAS any joy on her part, regardless of whether she was lost in her own little world, this would be much easier, despite the great loss I'd be experiencing. If she was at least happy or content, or even just oblivious to the circumstances, I could find peace and just learn to accept my own personal loss. But much of the pain I live with each day goes well beyond my own loss, and comes from observing and knowing that she is very aware of what she has lost and is losing, and that she is distressed, frightened and pained by it. She has become like a lost and frightened little child. I try to comfort her and make her feel safe, assuring her that I am always with her, that I will do anything for her, that I will always take care of her, and that no matter what, it'll be alright. But despite how far gone she is (late stage dementia), she *knows* it is not going to be alright, and she clearly expresses that to me. My mother has always had the sunniest, most cheerful disposition, throughout much struggle in life, but in just the last couple of months it seems she's reached her last straw in this struggle, and she seems very, very sad. That cheerful person I knew my whole life who would smile and be positive through anything is gone. Now she is sad all the time, and often weepy. She was being brave through her 4 year decline, and always remained cheerful, but now she just isnt able to smile through it any longer. It seems to me that she's now reached a point where she has given up. Its the oddest thing that she can be so far gone (can not remember how to properly use the toilet, can really not do anything for herself, sometimes cant remember how to eat or how to take a pill, cant remember how to do any activities, cant even focus enough to watch television...), and can often not remember how to speak sensibly other then a few words here and there - - and yet she is so aware of, saddened by and troubled by her situation. Is this common among other dementia sufferers...? Has anyone else observed such a thing with their loved one? Its very much like hidden beneath the outward manifestation of dementia, there is great awareness - she's in there, aware, but she's trapped beneath the dementia. Rather like a coma patient who later reports that they could hear and understand everything going on, but couldn't break out of the coma to convey that.

Anyway, again Fiona, although due to what I just described, it seems your mother and mine experienced dementia differently, I still find what you wrote very interesting, enlightening and inspiring, and would indeed love to hear more if you would care to share. I do find the perspective you were able to pull from your situation inspiring, even it is may not fully apply to my circumstances. Anytime we see how someone else can pull deeper meaning out of their struggle, its a leaning opportunity and inspiring, regardless of whether we experience our own personal struggle differently.

 

[Delphie]

What little of my faith survived into adulthood has been wiped away by my mum's dementia. If there is a God, and I doubt it, it's certainly not the loving father our vicar used to talk about. In fact I hope there isn't a God, because one that can inflict such horrors on us is terrifying.

 

[Chemmy]

My seven-month pregnant daughter was at my mum's funeral last month and it struck me that this was an example of life after death which I found very comforting.

I look at things scientifically, not in a religious or spiritual sense. Mum's genes were there in her yet-to-be-born first great grandchild and her kindness and compassion and gentleness - our family values, if you like - will be passed on though me and my daughter to this next generation.

Births and deaths are part of the natural cycle of life here on Earth. And I've found by not looking for a deeper meaning, I seem to have been able to accept mum's Alzheimers journey and indeed her death much easier than others. You accept what is, is, and deal with it accordingly on a day to day basis, enjoying the good days, not dwelling on the bad.

Do I sit here now, traumatised that she's gone? Of course not. How selfish it would be of me to have wished her to have to struggle through another day after twelve years of dementia. Death isn't scary if you don't believe in an afterlife; it's the dying process that's the problem.

Those with faith often seem to feel sorry for those of us who haven't. Actually, from what I've read on TP and elsewhere, maybe it should be the other way round.

 

[rjm]

I wish that everyone's journey was as peaceful, loving and trusting as Fiona describes. But when Sharon would pound at her head, yelling at me, demanding to know why she was so stupid - or when she is screaming, her body contorted in anger as she bites her knee or hand until they bleed it is not just my perception that there is suffering. There is an awareness and a suffering of loss that is very much Sharon's. And if anyone has caused this as part of some master plan - shame on them.

Shortly after Sharon's diagnosis, a friend of ours who lives a religious life, gave us a book called "Why bad things happen to good people". We tossed it without reading it. Sharon has spent a good part of her life working with and for people on the lower level of society, many of whom would be considered "bad people" by the "good people". The notion that our friend thought these "bad people" were more deserving of ill fortune than she was infuriated her.

Let us all just enjoy every day as much as we can.

To quote Billy Bragg, "And you have to take the crunchy with the smooth I suppose "

 

[Owly]

justsosad, you might find this little video by Eckhart Tolle helpful. "What is the meaning of mental illness?"

http://www.youtube.com/watch?v=0lagC4l7SO0

He explains that we are all part of the Oneness, all having an infinite variety of experiences both joyful and painful and that the Oneness is still learning something through the experience of a failing mind.

Sometimes the experience changes - the coin flips over - and the person who has always been "in charge" of their life, the one who has sacrificed and worked hard and given so much to others, becomes the one who is now helpless, the one to whom sacrifices are made, for whom others take their turn in working hard and being the giver.

This would be the Oneness saying "enough of that.....that script has run and run and it's time for a new script to begin".

We all have our scripts and deeply embedded ones they can be too. When dementia strikes, the script is wiped. All the software in the hard drive is lost. Everything happens in the present moment and there is no script for how anything is to be done. This is very frightening for the ego which ran its unconscious scripts for 80 or so years. Especially so for an ego which was responsible and sacrificing and independant and did a huge amount of busy, busy, busy - because suddenly there is no longer a script that tells them what to do.

Strangely, it is a very similar state to spiritual enlightenment when kundalini rises to the crown chakra (affecting the brain) and karma is apparently wiped clean. How could that be? Because you have forgotten what your responsibilities and duties and relationships are, so how can there be any sense of 'ought' in what you choose to do? Your slate has been wiped clean.

I wonder if my mum's dementia is to do with kundalini rising as it was accompanied by an activation of Uranus (planet of crown chakra) in her birthchart by the planet Pluto which makes things very intense. She told me, excitedly, that she was seeing fleeting, fascinating symbols rushing into and out of her mind. A rush of energy into the mind and brain that, in its intensity, wiped out many of her neurons and memory patterns. She feels no sense of responsibility any more for my blind Dad who she was always convinced she had come to look after as her life-long task. Now she needs reminding that she is married to him (she calls him sometimes 'our father' as she hears me calling him Daddy). She was the sacrificer and the giver and I think it quite possibly wore her out and somehow, the universe gave her permission to let off caring and being cared for instead. She is now very happy not to be responsible for the money and for my Dad's computer problems and for cooking and cleaning and washing and all that because now a team of carers/family do all these things for her. Astrologically, she also has a strong Neptune and Neptune is the sacrificer but also the one who, on the flip side, becomes the helpless victim and the one that needs rescuing.

You see, these archetypes can flip over and the other side is expressed as an alternative way for the Oneness to 'be' as an expression of that archetype.

Often we don't let our archetypes fully express in all their richness, because we get locked into our patterns/roles/duties, perhaps because we are compelled to do so by other people's patterns and scripts. But the Universal One chooses the moment to free us from something and use us to express something else.

This perspective has helped me, anyway.

As Eckhart Tolle would say, if you can ACCEPT fully what has happened, without resistance or denial or resentment, just ACCEPT 'what is', then help can come. You are riding the wave of the Universe, not putting up a barrier against it that blocks off what It wants to explore and express next.

 

[Isabella41]

I do have a deep faith in God. I do not identify as belonging to any man made 'church'. Churches are buildings made by man. Jesus Christ called his followers Ekklesia - which means a called out group of people. This is the true meaning of church. All through the Christian bible there are references to pain,suffering and dying. There are also references to joy, happiness and life. Everything postive has a negatitve and vice versa.

For many the question is how if God be a God of love can he allow all the suffering that is going on in this world. God is not causing the sufferings. Man's poor choices lead us to suffer much. For example many studies have shown that at any one time there is more than enough food and shelter in the world so that no one ever need go hungry or lack shelter. Yeet because of the selfishness of man many do hunger and lack basic shelter. How then can we say its God's fault. He clearly has provided for us all. Its not his fault if by our selfish natures we distribute the food and shelter disproportionally.

As for illness... From the moment we are born we are all slowly dying. Death is part of life. The bible tells us that all our days are ordained by God. Being a 'good' person in the eyes of those around us is not some defense against why we or our loved ones should not suffer. Jesus is the highest example of someone who suffered much unjustly. Surely if anyone deserved the label of 'good' it was God's only son. Yet he was mocked, beaten until his skin hung off him in strips. He was then forced to carry his own method of excution. He was then attached to the cross by large nails and hung there while he suffocated to death.

I have been through so much in my own life and I have often got discouraged yet each time my faith has been strenghtened and it has carried me in the darkest of days. I can truly say that if I didn't have my faith in God I really don't know how I could walk this road we call life.

Isabella