A time to reflect

[Lonestray]

I've not posted for some time as I've been very unwell, plus I feel there is so little for me to contribute.
Shortly it will be three and a half years since my wife Jean passed away in body. As I reflect on our final years I can say that I have only one regret and that is to have put her in a Nursing Home for a while when I did not believe I could support her at home.
Now I read a lot about being a carer: I'd like to know how one defines a carer? I've always considered myself as a husband. Though I spent up to 9 hours a day with her in the NH, I had ceased to be her full time carer; though I fed her and changed her pads. The happiest period was when I removed her from the 'Home'; stopped all medication and told everyone to go away and leave us alone.
When I first took her home I went on the internet for the first time, looking for anyone one that had decided to go it alone. It was in the hope of sharing information. It was a US site I found, and was informed that what I was attempting was impossible. None the less when I explained that I was managing on my own I was invited to share our story. This I did and passed on countless tips on every aspect of Alzheimer's I learned.
Though Jean was incapable of speech or movement I thank God for the almost five final years we shared as one. As for communicating; 'yeses' and 'nos' were with a kiss. A response to my kiss on the lips was a 'yes' and 'no' was met with a negative return kiss.
How lucky am I not to learn that I had gastric cancer till after her life? I have a lot to be thankful for as she inspired me with her love. That word I'd never known the meaning of till I met her. So I leave you with my favorite song: "Always look on the bright side of life."

 

[Amy]

Posted this song on the Music Thread for you Lonestray. It is a favourite with my 17 year old son....in facthe has said that if he dies before me he wants it played at his funeral!!!!

Love Amy

 

[Coletta]

New (ly) inspired

Hi

Im new and attempted to write last night but then my, rather long, post disappeared when I thought I sent it! Not good on the computer Im afraid, so Ill keep it short this time in case it happens again.

Lonestray, your post was, to me, the most inspiring I have come across since I started regularly reading a couple of months ago. The way you communicated with your wife moved me to respond to your wonderful caring. You say .....I feel there is so little for me to contribute.... Well, you have inspired me to carry on caring for my 96 year old mum in law who has been living with us for the past 10 years, who has lewy body alzheimers, is registered blind, and hard of hearing, as well as being very frail and strugggling to walk, getting lost indoors, and often is calling more or less continuously, especially for her deceased family. My husband is an only child, and we only have one son who doesnt live with us. All my family live abroad, so we do not have anyone to help us, and we had started to think, maybe it's time to be looking at care homes.

LITTLE TO CONTRIBUTE!!...You have shown that love conquered to keep you going till the end. I will try and remember you when I have my difficult moments and impatience sets in that ...of all the gifts, the greatest of these is Love.
Thank you Lonestray - from a newbie you have inspired with your story, to try and be a better carer. I am so sorry to read of your ill health and am sending you love and best wishes.
Now - will I be able to get this posted?

Colette

 

[Padraig]

Coletta, I was deeply moved by your post. I'll never know what it is to lose a Mum, Dad or a family member as I grew up as a 'nobody's child' in the Irish Institutions where children were sent by the courts for strange offenses.
In order to progress in life I managed to blank out the first 16 years of my life. There was shame and stigma attached to having spent time in those places, plus I was totally ignorant of normal life in the outside world and uneducated. It was an exciting time discovering new wonders like celebrating birthdays, Christmas presents and parties. Though I had witnessed death of fellow inmates they had little effect on me as I was devoid of emotions. They were the lucky ones as it brought an end to the daily suffering of all forms of abuse.
It was not until the final years of my wife's life that I started to research my background. Initially it came as a shock to discover that I have a criminal record from the age of two. I was sentenced to 14 years detention for begging.
Like every thing in life it's two edged. Researching my past has proved to be very disturbing and in a way it was as well to have kept the memories buried till now. I've just completed my story and it will be published this month. The story I've uncovered has both shocked and amazed me.
When I first met my wife and she inquired about my family and told her there was no one. She thought it very sad; but I explained it wasn't, because I'd never have to suffer what I considered to be the unimaginable emotional pain and hurt to lose a Mum or Dad.
Life has a way of teaching us, and in my case, it came when our youngest daughter of 15 was knocked down and killed by a careless driver. For the first time in my life I discovered the devastating emotional effects of losing one of our own flesh and blood.
I've been truly blessed by having Jean come into my life. Her gift of love removed all the cold hard edges that were part of me. As I said to her at the end; " You can rest now, you were sent to me, now you have completed your task and made me whole." Time and love are our riches gifts to give.

 

[Coletta]

Dear Padraig

Now it's my turn to be deeply moved (again) and even almost overwhelmed reading your life story. The last couple of lines are a beautiful testimony to your wonderful marriage.

Thinking of a two year old being sentenced to 14 years detention and life in an Institution brought the tears to my eyes. I also can't think of anything worse than to lose a child - what a hard life you've had! (The Irish author Lorna Byrne comes to mind. She wrote 'Angels in my hair', followed by 'Stairway to Heaven' unputdownable books which I think would be very comforting to read for people who have lost somebody close. Have you heard of her?)

I'm interested and very pleased for you that your story will be published next month - a great achievement and I would love to read it, as Im sure many others would too. Please let us have the details!!
Love and best wishes
Coletta

 

[Padraig]

Sorry Coletta, can't say I've heard of the books you mention but will look them up. As for mentioning my book I don't believe I'm allowed to on here.
We were a very lucky couple to have had 52 years married and best of all she supported me in my sporting career which kept me fit both mentally and physically.
Must cut short here as I have a visitor. Most days I see no one and go days without speaking so I'm sure you'll forgive me.

 

[johnpatcarl]

Hi pardraig i hope that when the time comes for me to make the same decisions, i have the courage to do so, my wife has her larynx removed so she cannot speak and communication is so difficult, as the dementia takes hold it is going to get more difficult. I have heard about the institutional abuse that took place in ireland and it sickens me to the core that it was allowed to continue for so long is an absolute disgrace and the way that it was allowed to be swept under the carpet for so long wthout being adressed should be a source of shame for those responsible and never allowed to be forgotton for i believe that by doing that it put them in the same place as the abuser. Incidently you did not have to be in care to be abused my father was a gambler and alcoholic and i was systematicly beaten every weekend when he invarably lost his wages, strangely enough he never beat my eldest sister or younger brother so perhaps there may have been an issue with the milkman, guess i will never know now. Have you heard the saying as an excuse the abused becomes the abuser i have and speaking for me nothing could be further than the truth. I hope you are being treated for the cancer thank you for your post i found it truly inspirational
you take care john

 

[Padraig]

John, may I say that the lack of a conventional upbringing allowed me to find my way in what I saw to be an unconventional world. Yes I'm often listening to the statements "that children from a background of broken homes and abuse go on to inflict abuse and stand no chance in life." If there was one thing I observed and experienced as a child it was that the Religious Orders who were my guards were not to be looked up to, but rather to be avoided. I bear no hate towards those people, rather I feel sorry for them. Somewhere along the line there were children too and their training was sadly wrong. They taught us nothing, but did trained us well. I can still spout Latin like a parrot, but haven't a clue of its meaning. That also applied to English words in the Ten Commandants. Imagine as a 7 yr old learning parrot fashion; 'though shall not commit adultery!' I never did come across 'a-dull-tree'!
Those early years afforded me a drive and determination to prove to myself I was not a nobody. In spite of what many might consider considerable achievements in work and sport (represented my country) and retired from work at age 54, I now know I'll never achieve a sense of self worth. That was taken from me in the first few years of life and that's OK.
John, I pray that you will have the strength to care for your wife. You'll never know till you try; I found strength I never knew existed. In fact one of our grandsons has discovered my latest secret and informed me by email. It went; "My Dad smiled the other morning when he spotted you out running the at 05.00hrs."
Though I'm in pain most days and nights I'm afraid of not being able to care for myself. So I hit the road at 04.30hrs five times a week, like the song; 'I keep on running' to prove I'm alive.
By the way this "After dementia" should be a rich source of information from people who have been "there and done it." Sorry for such a long thread.

 

[Coletta]

Dear Padraig
Im pleased to see somebody else has been inspired with your post as I was. Hope you had a good day today.
One way of finding out if you are allowed to mention your book is to just mention it and wait and see. (I want to put a wink here but the icon keeps going where its not wanted -again! Having trouble with computer skills). Otherwise, I expect there are ways and means of letting us know.....?

Johnpatcarl: I'm so sorry to read of your wife's illness and your troubles in your past. Wishing you strength and courage to endure.
Love and best wishes to you both.
Coletta

 

[Padraig]

Book

Coletta, I've sent you a PM with the information, but in case you have not got it or it's not reached you as you suggested here goes title Lonestray Survivor; Publisher; LuLu. It will also be in E books.

 

[johnpatcarl]

john, may i say that the lack of a conventional upbringing allowed me to find my way in what i saw to be an unconventional world. Yes i'm often listening to the statements "that children from a background of broken homes and abuse go on to inflict abuse and stand no chance in life." if there was one thing i observed and experienced as a child it was that the religious orders who were my guards were not to be looked up to, but rather to be avoided. I bear no hate towards those people, rather i feel sorry for them. Somewhere along the line there were children too and their training was sadly wrong. They taught us nothing, but did trained us well. I can still spout latin like a parrot, but haven't a clue of its meaning. That also applied to english words in the ten commandants. Imagine as a 7 yr old learning parrot fashion; 'though shall not commit adultery!' i never did come across 'a-dull-tree'!
Those early years afforded me a drive and determination to prove to myself i was not a nobody. In spite of what many might consider considerable achievements in work and sport (represented my country) and retired from work at age 54, i now know i'll never achieve a sense of self worth. That was taken from me in the first few years of life and that's ok.
John, i pray that you will have the strength to care for your wife. You'll never know till you try; i found strength i never knew existed. In fact one of our grandsons has discovered my latest secret and informed me by email. It went; "my dad smiled the other morning when he spotted you out running the at 05.00hrs."
though i'm in pain most days and nights i'm afraid of not being able to care for myself. So i hit the road at 04.30hrs five times a week, like the song; 'i keep on running' to prove i'm alive.
By the way this "after dementia" should be a rich source of information from people who have been "there and done it." sorry for such a long thread.

pardraig don't you dare appologise for thread you put it so eloquently, i grew up in what can best be described a deprived area of birmingham in the fourties and fifties and had very little education not the systems fault but my own although i suspect it was geared up for turning out factory fodder the last thing on my mind was educating myself and my biggest regret is that i never realised it when i was young enough to do something about it, my brother in law had a similar upbringing to your self and i used to have a workmate who was the same all three of you seem erudite and to have been educated to a far higher standard than myself so at least you have that not that it is any way a form of compensation. I find it asonishing that you hold no malice i doubt that i would be so charitable although i would like to think i would, there is enough hatred in this world without me adding to it. My wife had cancer of the oesophogus when you say cancer of the digestive system is it any way related to that. It is a pleasure for me to chat to you you have given me food for thought i just hope that when the time comes for me to take the same decision you took i am both phisically and mentaly able to. About the running i have had one knee replaced and in bed last night the other one locked i have been told that there is nothing more that they can do with that one so it looks like i am going to have two new knees yes you are right the product of a mispent youth!!!, you take care john

 

[Tender Face]

Padraig/Lonestray – it is great to see you posting and to know you are still running!

Both to you and to John ..... the idea that the ‘abused go on to abuse’ is fallacy – sure, some do – because they have never known any different and don’t find that someone or something internally or externally to break the cycle. In my experience, a lot of ‘abused’ (in different forms) go on to another extreme ... over-protectiveness (which isn’t always a bad thing!) Amidst that great spectrum, comes many of those who rise above their experiences ... who have more sympathy, empathy and understanding in their little fingers than most others have throughout their body.

They can have great creativity, determination, a sense of justice that comes from the heart, not from anything ‘taught’, an ability to be independent, to challenge in appropriate ways, especially to nurture others and to have the courage to tell their own stories so others may never go through the same – coupled with ‘forgiveness’ - makes for awe-inspiring people.

Paddy – and John – be proud! Be immensely proud!

Love, Karen, x

 

[johnpatcarl]

Hi karen/colleta in many ways i have gained from my experience i do not drink or gamble i have to my knowledge never hurt anyone in my life. I find it incredible that i am saying all this i would never have been talking about this three years ago i have had a bout of severe depression and since i came out of it i am a changed person the last time my dad hit me i was lying in bed listening to my mom screaming so i went downstairs to find my mom had blood running down her face so i stood in front of her and told my dad not to hit her he punched me and i said to him you will not make me cry this time, that was the last time he ever hit me or my mom i was fourteen at the time and i never cried again until after i had the depression thinking now i guess i saw not crying a sign of strength and crying one of weakness. The first time i cried as i say i got myself out of the depressed state and looked for ways i could manage margarets dementia that brought me to this website from there i got the adress of my local alzeimers branch and went along to the monthly meeting, there i met our rep i could not get margaret to stay longer than 30 minutes she was becoming very agitated so i had to leave early on the way out our rep yvonne came out with us and said to me that if i needed her she would be there for me and arranged an home visit and i could feel the tears starting to come and gave me a hug and i felt a few more tears come but i held myself together until i got home later that night after i got margaret to sleep i did myself a cup of tea sat down and the floodgates opened i must have cried for a good half hour. Since then i seem to cry over the silliest of things, i have been crying writing this i think it has stirred up a few memories. Pardraig i am sorry i have hijacked your thread i wanted to say so much to you yesterday but margaret gets upset when i do not give her my full attention so if its ok i will post to you again incidently i have put a thread called margarets story about the oesophageal cancer.take care john

 

[Amy]

Don't know what to reply John


(((((((HHHUUUUUUGGGGG)))))))

Actions speak louder than words.

Love Amy

 

[Padraig]

Karen, That is a beautiful post thank you. It was a bad night and I'm suffering to-day.
As I reflect on the final years of showing my deep love for my wife I find it very hard to believe I managed what I did. Since I've been on my own I've just about managed to do the daily chores about this four bedroom house. I've not got down on my hands and knees to scrub the kitchen, hallway and bathroom floor as I did when looking after my wife.
I'm attempting to adopt the same mindset I took in those final years; just to live in the NOW and treasure each moment. I can't say it wasn't tiring but the rewards are still with me. One of the nicest memories is of the afternoons after pushing her for a long stroll. I'd lay her on the bed and lay beside her; her head on my chest; I'd lift her hand across me and we both fell into blissful sleep.
John, my cancer was/is gastric and I had the whole of my tummy removed. My survival was touch and go and I spent more than a week in intensive care. It is nine months since the operation and the strange thing is I find there is, like Alzheimer's, I find no support. I first started asking about my loss of weight and the constant pain. The answer was always the same; "You've been through major surgery" ; like I should know what it feels like.
With regards to holding bitterness towards those who wronged me, I've long since learned that it can only be destructive; better to pity them for their limitations.

Can I leave you with this thought. Whilst out walking on a warm summer's day, I was passing a roundabout and traffic was building up. I observed a chap driving with one hand hanging out as though holding the door. I shouted: "Please use two hand to drive safely." His response was a whole load of angry expletives. What could I say, with people looking on. "I can see you can't drive safely. You display a limited vocabulary to communicate." That left him dumbstruck as passerby's laughed.

 

[Coletta]

Dear Padraig
Well....nothing happened!! and now we all have the details of your book. (smile should be here)!! I looked in the 'private message' but couldnt find anything, probably due to my lack of compputer skills. I shall be looking out for your book, as Im sure there will be others reading your post.

I had to smile reading about a-dull-tree and made me remember my cathechism days, taking turns standing in front of the class and having to recite it parrot fashion. Being instilled in us as children, it does remain with you throughout life and good for us though.

Tenderface: your comments to Padraig and John - I couldnt have put it any better, and yes, they should be so proud of themselves.

Johnpatrick: You say you cant understand why Padraig doesn't hold malice...remember, the Lord says....vengeance is mine. These people are to be pitied for what they have done, and love conquers, as Padraig has shown.

I also read your post about toiletrolls - well Im in exactly the same position with my mum in law. It seems there are many of us in a similar position. Mum blows her nose and passes me the tissue to dispose off. On a good day I can see the funny side of it.

Love and best wishes to you all.
Colletta

 

[johnpatcarl]

Pardraig i know you do not want compliments or indeed need them i am in awe, i have a cleaner that comes in twice a week and i do not know what i would do without her i think that taking over the housework was my biggest chalenge i never did the cleaning not because i would not Margaret said i could not do it well enough so sorry to hear about your opperation i have been there with margaret it was touch and go for her too she spent ten days in intensive care she has had some bowel transplanted and now her throat is bowel it has to be dilated every three months so she can swallow you attitude is spot on. my brother in law hails from dublin and after one of his workmates give him an irish joke he said to him i realy thought that was funny pity it had to come from a thick englishman i realy miss him he died of an aortic embulism about ten years ago now i can honestly say i loved him more than my brother or sister and i just know he loved me you can tell the first time i ever heard of william shakespear was when he recited a verse from one of his plays i must have been eighteen at the time. sorry i have gone on hope you feel better this afternoon put your feet up sod the housework. john

 

[Padraig]

Johnpatcarl, I left Ireland in the late 1940s and have seen many changes in the UK. I've referred in one of my books how there was a notice outside a pub in Grantham :"No dogs or Irish allowed." To-day there are so many people with Irish names: Sean, Liam, Colleen etc. The odd thing is some are unaware their meaning: John, William and Little Girl (a term of endearment) like Seaneen when a boy is little.
I'm only Irish because I was born there and have an Irish accent. Often I dread being asked where about in Ireland I'm from, for I know little of that country. None the less I see the funny side of many of their sayings like the look on a child's face when told: "Shut your mouth and eat your food." I see and use humor in my story to shine through the dark clouds.
It may sound strange but I never shed a tear during my incarceration: 'boys didn't cry'. When were were beaten we snapped and barked as we backed off. The touch of an adult only meant abuse. When we were grown up at ten were were transferred to a bigger camp were we started work. The children who I refer to as 'Nobodies'; we were mixed among boys who had parents that visited them once a month.
The first time a number of us 'Nobodies' watched one of those fellows being beaten we howled with laughter to hear the strange cries: "Mammy Daddy."
Somehow or other pride is something I can't feel it's somehow wrong. Our children and Jean saw me break down and cry for the first time when our daughter Karen was killed. I fell apart and it was a big shock to our son and daughter. In fact our son told me that his sister was very concerned about me falling apart after Jean died. It didn't happen. Unknown to me they chose music for both of us at the funeral. For Jean a favorite was: "Lone me tender" by Elvis. For me it was Nat King Cole's "When you fall in love."
Coletta, I'll keep you informed of when the book is published. I wish you all well.

 

[johnpatcarl]

Pardreig i don't know where that came from i have never told anyone about my childhood, i had a snippet of the conditions you lived in from my brother in law he would not talk about his childhood i guess he did the same as me and locked it away in the back of his mind. i just know that i lived a life of luxury compared to you, and it is a credit to you that you are the man you are today. as you must be aware there is a large irish community in brum i swear this is true i thought ireland and england were the same country well into my teens most of my friends had irish parents and i am pleased to say i never saw any signs like that and with a name like john patrick there must be a bit of irish in me my nans surname was grogan. it has been an absolute pleasure in talking to you i am so glad i have had the chance to read your story you have made me feel ashamed i recently had a weeks respite did it do me any good i do not know i am having another one the end of june they tell me the plan is to keep margaret at home for as long as possible i said the time i would have her in care was when i felt that they could look after her better than me and to be honest i doubt they can yet but she is looked after very well and it gives me time to catch up on the jobs i cannot do when she is at home i was only going to write a couple of lines so i will not bore you to death i hope you have a better night tonight if you do not mind i will pop in occaisionaly to see how you are all the best john

 

[sunny]

what a fantastic uplifting post. Fortunately I always tend to look on the bright side of life, always have hope I always will.