Spiritual Aspects of Dementia

[Padraig]

It's a funny old world

The more I learn of conventional society the more I'm grateful to have been left to make my way alone in this funny old world. For all intent and purpose I should have been a good Catholic, but I have nothing to do with it.
My earliest memory was waking up in what I came to believe was an orphanage run by about ten nuns. There were in excess of 160 male babies and children up to the age of ten. NHs have a better ratio. Once we reached age ten. we were transferred to an adult center run by Christian Brothers till age sixteen. In those institution there was every imaginable form of abuse against the young men who would now be considered children. But then we provided free labour for the religious orders, working on the farms and workshops turning out goods for sale. At age ten I was able to make and repair clothing and later I worked on the poultry farm: never tasted chicken and had two eggs a year.
During my time there I witnessed deaths, some violent but never shed a tear, I was fortunate as I knew no different. Once I was released into a strange new world I chose to forget my stolen childhood and moved from that God forsaken land called Ireland. Not until I was in my seventies and caring for my wife was I to discover the reason I was in those Institutions. I had a criminal record for begging at the age of two and was sentenced to 14 years detention. They were called Industrial Schools and latterly are recognise as child labour camps. Whatever family I'd came from chose to just plain abandoned me. I was left emotionally barren, uneducated and physically underdeveloped and left make my way in the world.
On reflection I can't begin to describe the tremendous benefits I've derived from such a background. There is so much to appreciate in the time we are allotted in this world. In my case there was little time to waste in achieving the many goals I set my self and was able to retire by age 54.
Best of all I thank God for providing the strength of mind and body to care for my wife on my own at home for her final five years. For me it was a privilege, an honour, humbling experience and the most rewarding time of my life.

 

[rjm]

Padraig, a funny old world indeed - and a treasure that your wife was able to get such goodness out of it

 

[kingmidas1962]

I'm not a religious or particularly spiritual person, as far as I'm aware.

I think that there is no REASON why bad things happen to good people, and good things happen to bad people - they just do. Sometimes life does not seem fair, sometimes it does.

Sounds a bit bleak when I write it down like that!

I don't feel persecuted or that I've done anything wrong, or that I 'deserve' (or don't deserve) the things that happen to me - they just happen.

My mum is always talking about 'blame' or that things are her 'fault' even when they are out of her control, and it just serves to make her unhappy ....

 

[Delphie]

I found your post incredibly moving Padraig. I'm sure you don't want smpathy, so I won't offer that, but I hope it's ok to say that I admire you very much for creating a good and loving life out of such a cruel beginning.

 

[Chemmy]

Well, Padraig, it's maybe taken much of your lifetime but at last the chickens seem to be coming home to roost...

 

[jackwilson]

im with padraig completely on this, i also was baptised and educated in catholic schools but now i am without religion, my dad and his 2 sisters were also bought up by the christian brothers in ireland from an early age, he 'escaped' at 15, the stories i have heard about the horrific deaths of babies and children in their care are worse than any horror film, the abuse and neglect subjected from these 'do gooders' dressed up as people working in the name of god to these poor children who didnt have a voice to be heard should never be forgiven or forgotten as far as i am concerned.
to watch my 63 year old husband suffer with dementia and try and accept that there is anything spiritual in this is way beyond my comprehension. to watch someone we love with this cruel disease and try and see anything good in it is unbelievable

 

[Big Effort]

Hello Padraig,
I am Irish, luckily I grew up post this carry on, and it doesn't bear thinking about. Your life and accomplishments have been the ultimate triumph over adversity. Religion has a whole lot to answer for..... but your story highlights what the human spirit is capable of rising above. My father was a prisoner of war under the Japanese, he was one of a few who survived the ordeal, and once he was out, he too focused on making the most of life. I wonder if we, the priveleged and pampered generations, are capable of such courage, leaving the past behind and making a real success of life. Good for you. Hugs, BE

 

[Isabella41]

On reflection I can't begin to describe the tremendous benefits I've derived from such a background. There is so much to appreciate in the time we are allotted in this world. In my case there was little time to waste in achieving the many goals I set my self and was able to retire by age 54.
Best of all I thank God for providing the strength of mind and body to care for my wife on my own at home for her final five years. For me it was a privilege, an honour, humbling experience and the most rewarding time of my life

Padraig to hear you speak like this is truly humbling. You could just as easily have turned bitter and taken a very different view point. You appear to have made a success of you life and your early life was no hinderance to it. Others may have chosen to follow a different path and end up in a poor poor me victim mentality to the extent they live their lives still enslaved to the instution that abused them.

the abuse and neglect subjected from these 'do gooders' dressed up as people working in the name of god to these poor children who didnt have a voice to be heard should never be forgiven or forgotten as far as i am concerned.

Jack: I agree that what happened should never be forgotten however unforgiveness only leads to a bitter root growing up within us. Forgiving someone does not mean we let them off the hook so to speak. Nor does it mean we set them free to go on abuse more.Jesus when speaking to the woman caught in adultery told her her sins were forgiven but he also told her to go and sin no more. Forgiveness always costs the giver much more than than the person who is on the recieving end but it also sets the victim free to move on.

In my own life I have suffered some pretty horrific abuse. I chose to forgive. It wasn't easy but it means my abuser no longer has any power over me.

Isabella

 

[Chemmy]

Forgiving someone does not mean we let them off the hook so to speak. Nor does it mean we set them free to go on abuse more.

Noble words, but forgiving sins without penalty (which is what seems to have actually happened) is what allowed these problems to continue in the first place. If the institution concerned stopped sweeping it all under the carpet, thereby allowing the abuse to continue, the rest of the world and his wife might have more respect for it and yes, maybe , just maybe, Padraig, Jackwilson and all those other poor souls out there would then be able to forgive.

But if they didn't, I'd understand.

 

[Padraig]

Here's looking at you

When I first entered the free world I went in search of something, though I knew not what. Most weekends and holidays I took off to different parts of the UK and stayed in B and Bs or the local YMCA and visited local dance halls. It was on one such visit to a small mining town in Co. Durham that I was to meet a young teenage girl in a dance hall that was to change my life forever. I had found a place that felt like what I imagined was a real home.
The first time I was invited to her home; a two up two down with a family of her two brothers and two sisters I experienced a richness of love and security that no money can buy. Years later I understood when she had AD why she wished to 'go home.'They took a stray in from the cold. Best of all that young factory girl took me on in marriage even though all I had to offer was a dream. The dream was of a home in the countryside where children would be free to express themselves in mind and body. When I bought our first house she asked if it was the one I dreamed of; not quiet I told her.
A couple of years later I found my dream: a large six bedroom house set in a number of acres in wooded countryside. In addition there was a two bedroom cottage plus out buildings. All our nine grandchildren spent many happy hours playing in the large orchard and down by the river. Some of them stayed with us for over a year. Not a penny was owed on the property by the time I retired to enjoy our grandchildren.
Sadly the dream came to an end when my wife had a fall and broke her arm; part of our Alzheimer's journey. She went into hospital and returned home in a wheelchair. For a while I cared for her but found I could not maintain the land, houses and care for her and felt forced to place her in a NH.
That proved to be a total disaster for both of us as she gave up the fight to live and I spent 8-9 hours each day at the Home feeding and helping her and other patients. The answer was simple; to downsize and move to a four bedroom house at the edge of town and make it fit for purpose. So began the final part of our AD together. Why would I allow a stranger into our lives no matter how well intentioned. Family kept their distance for they knew that Dad; Granddad did things his way.
One can't help but smile to discover that there was yet another twist in the tale. Two years after my wife's passing I'm diagnosed with advance stomach cancer. How lucky am I? It might have occurred whilst I was caring for her. Who knows what the road ahead will bring us; more surprises or challenges?
I've had a wonderful life of success in work, sport and best of all a loving family.

 

[Coletta]

And Padraig still goes for a regular run!

Isabella I like what you have written.
I think the spiritual lessons to be gained are for the carers, and I like the words of St, Therese below, to which I aspired during my caring time.

Caring gives us many opportunities to show love; to develop (more) patience, be kind(er), to not complain either inwardly or to others, to do the things you don't feel like doing.
......Love is eternal........The greatest of these is love.

My MIL was a wonderful lady and I knew the 'theory' but I still wish I had done better at times! It is so much harder where there has been a troubled relationship, but I believe that this could be an all the better opportunity to 'store up treasure in heaven'.

A very good question.

Coletta x

 

[Isabella41]

but forgiving sins without penalty (which is what seems to have actually happened) is what allowed these problems to continue in the first place.

It really depends on what one counts as penalty. Nowadays it seems to be that pain is measured in £'s. That confuses me. How can giving me £500,000 recompense someone who has had their childhood stolen and who suffered unimaginable horrors. I know the Courts feel duty bound to offer some remedy in law but money does not seem a suitable remedy.

If I may be allowed to look at it from a spiritual prospective. The bible tells us "vengance is mine says the Lord". There have been many instances where it may have looked like someone has more or less gotten away with their crimes but it is later discovered the suffered much in body - perhaps the developed a very painful condition that just refused to respond to medication - which totally puzzled the doctors. Of course from my perspective of faith I firmly believe that how we act in this life will determine where and how we spend the next one.

Padraig

You truly are a remarkable man. Even now with advanced stomach cancer you don't appear to have a hint of the 'poor me's' in your voice. You choose to see that while this is not good news it would have been worse news if you still had your wife to care for. You are the perfect example of someone who prospers in life in spite of their circumstances. Too often we read in the media today of someone who shouldn't be held accountable for x or y as they had a hard start in life. This makes my blood boil. Just because someone has been vile and downright cruel does not mean the 'victim' should soak up their tormentor's abuse and churn it back out in whatever guise they choose under the auspices of "I don'y really know any different".

Living in Ireland I've met other Padraigs who made successes of their lives despite their early years being extremely horrific due to institutional abuse. I have however met others who although the abuse happened perhaps 50 years ago are still in effect living the abuse day by day as its all they ever talk about. Their tormentors are no longer around but the victims choose to stay in victim mentality and so allow themselves to remain shackled to their tormentors.

Isabella

 

[Chemmy]

It really depends on what one counts as penalty. Nowadays it seems to be that pain is measured in £'s. That confuses me. How can giving me £500,000 recompense someone who has had their childhood stolen and who suffered unimaginable horrors. I know the Courts feel duty bound to offer some remedy in law but money does not seem a suitable remedy.

That's not what I meant by penalty. Those perpetrating the abuse are seemingly not being held to account even now unless the press gets involved. Getting the sack and prosecuted (as would happen in private sector employment) might have been a bigger deterrent and given those who were abused some closure.

You might feel they will get their just deserts in the next world, Isabella. However, those of us who do not believe in a next world would really like to see some justice applied now.

I'm intrigued by your

very painful condition that just refused to respond to medication

comment. That sounds like vengeance to me. I admit I find it hard to see how you find that comforting.

 

[CollegeGirl]

I've read this thread with great interest but have refrained from posting up until now because ... I don't really know what a spiritual person is. What does that mean? Forgive my ignorance. I suppose if I don't know what it means, then I'm not one .

I always struggle with questions like these. I think I'm a bit of a hotch-potch because although I'm not very religious, I think I do believe in God and admit to having prayed when I was at my lowest, and it helped me. But I also believe strongly in fate. I also believe that there is something more than this life, but don't know if that's an actual belief or just wishful thinking. Whether there's a heaven or an afterlife or something, I don't know what I believe really. Yet I'm a very practical person, too, and fairly pragmatic. I'm also a deep thinker, a worrier. Disagreements I can forget about and forgive any argument, but if someone hurts me, really hurts me, then I find it hard to forgive. I'm not a vengeful person under normal circumstances but I think it would depend on the crime. If someone hurt one of my children I might feel very differently.

I've no idea what this mix of feelings makes me .

 

[Padraig]

Isabilla,

You are correct when you say that so many victims find it impossible to let the past go. What's done can not be undone, but lessons can be learned. Sadly I receive too many Emails of late with reference to the suffering of victims of the Magdalen Laundries. Many allow the experience to continue to ruin their lives with hate and bitterness. No matter what bad experience we may have had there is always a positive aspect to it.
When our 15 year old daughter was killed by a dangerous driver, one might ask, what could have been positive outcome was there? The answer is best explained by an early conversation my wife and I had when we first met. She asked about my family. When I informed her I never had one growing up, she remarked "That's sad." My reply was: "No it's not." "Why would you say that?" she questioned. "Because one day people with parents will have to suffer their loss and I can't begin to imagine the pain and hurt they will undergo." There was I believing I was immune to emotional hurt!
Now I ask; "Why are people in so much pain and hurt over a person they love so deeply." My answer: because that person has given so much of themselves to enriched their lives with love and compassion. In the case of a parent they will have molded you into to the person you become and you will always be part of them." What if a partner or parent left you devoid of happy memories? Would you be so heart broken? I briefly met my birth Mother at age 16 for the first time. There was no bond, but no bitterness. In later years I just felt sorry for her and hope she had no regrets. Loving parents and partners would never wish their grown-up children or partner to suffer on their account, but rejoice in the fond memories they shared.
Sorry I don't post much these days due to painful attacks and trying to get on with writing 'our Alzheimer's story'.
Coletta, yes I'm still running, I find it far easier than suffering the painful attacks.

 

[Chemmy]

I think it makes you pretty normal, CG

I was like you until about twelve years ago when my daughter did an AS level in Philosophy of Religion and I start reading around the subject too.

I'm not spiritual but I imagine it feels as though there is 'something out there' or a search for a 'reason' for why we're here - but, hey I guess I'm not the best person to try and explain that.

Religions have come and gone over the millennia (Greek gods, roman gods, egyptian gods) presumably because people have been seeking out the answer to that same question. My theory is that these various religions were an effective means of the few maintaining control over the many, but that's probably best discussed elsewhere....

I was in Mexico in December visiting the Mayan temples.

The people (mainly thirty-something women) you can see meditating (?) around the base of the main pyramid at Chichen Itza were clearly there for some sort of spiritual experience.



However, according to some, the Mayan calendar was predicting the end of the world on 21 December...but the locals all had their Christmas decorations up, so I guess they weren't too worried .

 

[CollegeGirl]

I think it makes you pretty normal, CG

Phew, thank goodness for that. I always feel a bit wishy washy when I can't define myself!

Like when asked at an interview "what are your strengths and weaknesses?" No idea! Ask someone else! Maybe that's why I've been in the same job for years and years and years and ...

 

[Isabella41]

I'm intrigued by your
very painful condition that just refused to respond to medication
comment. That sounds like vengeance to me. I admit I find it hard to see how you find that comforting.

I have heard of stories of people with conditions that defied medical science. Medical science decreed that a combination of x + y +Z usually elimates the condition from the bost however in this case no matter what they try nothing works. I am thinking of someone specific but this someone was not a very nice person (i'm choosing my words). Now I am not saying this was God heaping a punishment on their heads as retribution for their very serious wrongs but its possible that this what happened.

No. I don't take any personal pleasure in watching anyone suffer. I try to treat everyone (even those who have gone out of their way to be particularly nasty to me) with courtesy and respect.

Lets say going back in time lots of people were sacked and/or stripped of their offices due to their abusive ways. Yes it would have stopped them doing it again in that location but it wouldn't have stopped them doing it again. I can only comment on Ireland but Ireland in my childhood and earlier was one ruled by the Catholic church with a rod of iron. The church's tentacles reached into every part of life and they ruled the people with fear. Generally speaking people who have the tendancy to abuse will always seek out new ways to perpertrate the abuse and keep moving around. That is after all why the CRB checks came in to force. Even they are not totally fool proof as all it proves is that someone hasn't been caught doing anything suspect. You only have to look at how many care workers have been caught in their employment abusing the vulnerable folk they are meant to be looking after to see this.

Even with all this the victim is still the victim. I don't suppose hearing that their abuser hs been fired or that they have been awarded X amount of money is ever going to be enough - after all how could it. Nothing can wipe away the horrors they suffered. They can however choose - with professional help if appropriate- to try to move on as Padraig very obviously has done.

Isabella

 

[lilypad]

Hullo again, Like you I am a carer of a dementia sufferer. I lay awake at night wondering where it will all end. In my first reply I gave you a personal testament. I was and indeed still am a lapsed Baptist who had looked at the contradictary dictates of the church and was very confused. No such things as ghosts. but told to pray to the Holy Ghost. I could go on. Then this revelation made me realise that spirituality is a separate concept from organised religion. There are more things in Heaven an earth that are unexplainable. My vision told me to fulfill my potential and I now have a masters degree in psychology.This was a hard road. First to get a.levels while working as a lab tech, Then a 3 year teaching college course followed by a B.A course while teaching full time and finally a Masters degree. All these things while bringing up a family, working full time and looking after my mother with Parkinson's disease with LEWY BODY dementia. When mum died my husband was diagnosed with Parkinson's disease. Now he has Lewy body dementia also. But HEY we have a roof over our head plenty to eat and no money worries. We take one day at a time and I never attempt anything that I think I cannot complete. I was told it would not be easy but it would never be more than I could cope with, although at times I have come very near to the edge. When this happens I think back. You will find REAL HAPPINESS with My people. I was also told that there are many ways to find .God : different religions take different paths which all lead to the ultimate reunion with the the Supreme Being. God is Love. Love your neighbour as yourself because HE IS YOURSELF. wE ARE ALL JOINED BY AN INVISIBLE THREAD THAT UNITES ALL LIVING THINGS. I CONTEMPLATE THIS CONCEPT OFTEN. This theory of unity is making itself manifest in newspaper articles and in television discussion groups and I think (I knew that 40 years ago. ) I would love to hear from others who experienced similar encounters. I shall be back with further insights

 

[Chemmy]

My theory is that these various religions were an effective means of the few maintaining control over the many,

Ireland in my childhood and earlier was one ruled by the Catholic church with a rod of iron. The church's tentacles reached into every part of life and they ruled the people with fear.

I rest my case, m'lud.