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Journey's end

mickyhugh

Registered User
Jan 13, 2008
4
london
Hi Padraig.

I was banned from this website in the past; and it was no loss to me; but for you my friend I would walk to the moon; to let you know what a hero you are to me; you are truly the only inspiration I have had, or ever received from this site and any other site.

I was an angry man; looking for answers, and guidance; and in you I found it; and only you alone.

You will remember mickyinlondon; I am he; and I hope at least these forums moderators allow you to read my post to you; before it’s deleted.

Rita is my Jean; so you understand more than most what I am trying to say to you; but I lack the ability to say it correctly; or even to be acceptable to the moderation that restricts many people from truth on this site.

When I heard the news from others about Jean; I cried for you like you were my brother; Padraig I am so sad that this has happened, but I know your courage and stamina is beyond almost everyone; I know; you are a true man amongst true men; so many men take the easy option; but you never did.

From knowing you just a short while; you gave my so much hope; and no-matter what others say; you are the true hero on any forum; to me; and in my honest opinion.

These are a very sad time for you, but know this, others will take the tough road you took; and you lead the way for those like me, with your courage and devoted love for your girl.

We may never meet again; but you alone; I will never forget; thank you for showing me the way to go, and the true love to give, to those we love so dearly……..Micky.
 

currywurst

Registered User
Jan 29, 2006
46
Hi Padraig

I have only just noticed this thread and I wanted to say how very sad I am to hear of the loss of your wife Jean. I have gained an enormous amount of inspiration from you with the dedication and brilliant care you have given Jean and it has helped me know that the decision to carry on caring for my mother at home is the right one.

May I wish you my very best wishes for the future, kind regards, Jan
 

merlin

Registered User
Aug 2, 2006
139
Surrey
Hi Padriag

I also have just noticed your post. May I also add my heartfelt sympathy and admiration for the way you coped. You were an inspiration to me when I first joined the forum and helped me fight the system and get something done.

Now it is your turn to look after yourself.

Merlin
 

Lonestray

Registered User
Aug 3, 2006
236
Hereford
Love them all the more

Not everyone is fortunate enough to be capable of caring all the way for a loved one. It was my background, circumstances, physical and mental condition, plus most af all an inspirational love made it possible and rewarding.
Micky, for me there was no option, when you love someone, it's all the way. My bigest concern was, outliving Jean and so I worked hard at keeping fit. She was my purpose for living. Most people experience love from the day they are born from a Mom, Dad and/or family member. That's accepted as the norm. I was 21 before I was to experience what it was to be loved, or allow anyone to touch me. Back then I was one wild lone stray. To experience love for the first time was life changing and inspirational. As you can see I'm not special or remarkable, love is. My life reflects that, for how else could a boy let loose in a strange world survive. Jean's love inspired me in sport (repesented my country), at work, I was able to retire to a large country house at age 54.
Though she's gone she's still deep in the heart and soul of me and will no doubt be the inspiration for me to get on with my next book about our lives. All the proceeds of 'Lonesome Stray' go to the NSPCC. It's my hope, that our experiences with Alzheimer's will shed a little light on the mindset of myself and that of Jean, which may in turn be of help others.
It is of comfort to me knowing that I did all I could to allayed all Jean's fears during the End Stage years.
My best wishes to you all in your caregiving, consider more your loved one's hurt, it will ease your hurt.
May your God go with you. Padraig.
 

mickyhugh

Registered User
Jan 13, 2008
4
london
Hello Padraig.

For me there is no option either; I have to outlive Rita as well; or like you knew so well; it would mean a NH for her; as it would have for Jean.

You say you are not remarkable; love is; I ask you to remember this; you honoured your love, you cherished your love, and you never betrayed your love; to me this is remarkable in a world of selfishness of so many that only consider themselves and the easy way out.

Like you; I cannot betray my girl, or let her down; now that things are not easy or perfect; my girl will die at home with me; and with her knowing love and security to the end.

I guess we are both born fighters in our own ways; and we do not suffer fools lightly; knowing you did me a power of good; now I fight in a different way; I fight for Rita; just as you did for your Jean.

Rita is doing just fine at the moment; and with force, and threats of publicity, I have secured all the medication I wanted for Rita; which I was denied before; with a year of much the same tactics, I have sorted out and collected all her dues, from every source; and against lawyers etc; and without the demanded power of attorney, or any other power that came my way; this I was told could not be done; yet I did it by using my computer to fight; pounding the life out of those that stood in our way.

OK; this may not be the proper way, or the polite way; but we both know, ‘’Padraig’’ that nobody really helps us; we have to do that ourselves.

This is why you are special to others like me; you did it; and you did it alone; against all the odds; and against all those that think they know better than you; and you were not capable in their opinions; and your Jean was safe and secure to the end.

I read of love etc, of forums such as this, each with their own interpretations; but you are the only person I know that understands what that means; you are the only one that I see that honoured it to the end; and in your Jeans heart; she must have felt that love always; and in that; you are justly a hero to me; and undoubtedly a life long hero to your Jean.

Maybe people like us are a pain to others; but we bare no shame, nor tolerate failure, we do as we know is right for us.

Since I left here long ago; I have used you as my guide; I have changed the way things are done; and nobody touches Rita now, without me saying so; she has amazed her doctor, and her friends with her ability; they all thought she would be beyond help by now; yet she seems even better than a year ago; and I think this will prolong her life no end; but even if it doesn’t, the quality of her live is better now; than it was.

This is why you are special to me; you gave me hope; where there was none.

And like you with Jean; I will see that Rita remains surrounded with love and security to the very end.

I am very proud to have known you, Padraig; may your god also go with you; I also think our God, is the same God.

Take care now; rest now; and look after yourself……Micky.
 

Lonestray

Registered User
Aug 3, 2006
236
Hereford
Going it alone

Micky,
The reason that I came on the internet some 18 months ago, was to see if I could find someone else who had made up their mind to go the full AD journey with their loved one. I'd hoped to either learn or share experiences. When I'd failed to discover anyone doing what I was doing, i. e. spending every day 24/7 from 04.40AM to putting her to bed at night. Every day had to be the same, just like looking after a baby, only babies talk or cry out plus they progress. Except for visits from our daughter for a chat, I saw no one, but I was happy. I had an other human life in my hands, that's an awesome thought.
The down side is now, I live in isolation. Today I've been up early, had my run, cooked lunch, and with no one to talk to, I become restless and just had to go out and walk. Now I understand what it must be like for people with AD. I've seen so many walk the corridors in the NH, just like toddlers unsure on their feet. Only with our loved ones, their fighting the loss of spacial awareness, and like children it's the time for falls. Caring alone is major life changing, but when it's over tere's no help. Strange there's help for ex-prisoners to adjust. But then maybe not, as some sufferers consider being put in a NH is like prison. The only differance he pays a fortune and comes out in a box. The prisoner is well fed, housed and clothed free of charge and sometimes out cured!
I'll be 77 this year and the years of the caring experiences has left me scared of growing old in this society. I'm more aware now
of the fears that confront those with AD, the fear of being 'put away'.
Who's going to listen to an old person like me? Young ones are the professionals and experts. They read, talk and write a lot, but when they are old, another lot of young ones will come along with all the answers! It saddens me to see the lack of understanding between the generations.
Micky all I want to do is to let my years of pratical experience
be of some use to others. For those who wish to go it alone, please don't be like me, accept help with housework cooking etc. Keeping a loved one at home can be done, but not for everyone.
I wish you all well in your endevours. Padraig
 

mickyhugh

Registered User
Jan 13, 2008
4
london
Hi Padraig.

I know your feeling of now being alone; your job done after so long; and your loss of Jean after a lifetime of love and care.

But; there is no need to live in isolation; but a very good reason to now look ahead; and to making and finding new friends.

I have a little private forum called just that; ''Friends'' and I would like you to join it, if you wish to; we are small in number; but it will grow in time with people that just want to be and have friends to post the odd post too; I think it might help you to adjust to your life now; like when you are feeling alone, and blue, just to talk to others about anything you like.

We are not anything to do with any kind of health issue; we are just a few friends that respect each other; talk and say what we are doing; everyday sort of things; and never any conflicts of any kind.

I think it will be good for you just to know that others are still interested in you; and would like you as a friend.

If you wish to join us; the address is below, it should open direct; but if not, copy and paste it in the browser; if you have any trouble let me know and I will sort it out; that is if you do want to join us.

I will activate you as soon as I see your name.

I personally hope you do join us..Micky

http://friends.freephpbbforum.co.uk/
 
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Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
I think it will be good for you just to know that others are still interested in you; and would like you as a friend.

Dear Padraig, there are a lot of people interested in you here, and many friends.

I'm sorry you're feeling so low. Jean was such a huge part of your life for so long, there are bound to be huge gaps when you feel so alone. The feeling won't go away, ever, you will always miss your Jean. But try to mix with people a bit more, join a club -- but only when you feel ready. Don't try to force things.

And post on TP whenever you like, you're part of our family. Join in the threads on the advice forum, you don't have to stay here, unless you want to.

You have so much to offer.

Love,
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I'll be 77 this year and the years of the caring experiences has left me scared of growing old in this society. I'm more aware now of the fears that confront those with AD, the fear of being 'put away'.

Who's going to listen to an old person like me? Young ones are the professionals and experts. They read, talk and write a lot, but when they are old, another lot of young ones will come along with all the answers! It saddens me to see the lack of understanding between the generations.
Hi Padraig

I'm hoping that you realise that in Talking Point there are very many people of all ages who listen to your experience and wisdom.

One of the things we actively encourage is the understanding by the new and existing generations of professionals of the experiences of those who know about dementia.

Relating experiences here is a powerful way not only of helping others who are in the same boat, but also of making those experiences more widely understood in society as a whole.

The power of TP is for those new to caring for someone with dementia to have a variety of experiences opened to them, so they can decide which best suits their own needs and those of the one for whom they care.
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Padraig
I am a little ahead of you in this awful journey,and a little older.
You may recall that my darling Peggy died in July 07.
I had kept her at home for 13 years but she became desperatly ill during the last 2 weeks of her life.
We were told that if she did not go into hospital she would die anyway,so what choice did we have but to cling to straws.
She went into hospital,but after a week she decided she had had enough and checked out.
I am now alone but still helping out on TP amd hopefully helping others to cope.
I fill most days on groups furthering the cause of older people and in particular dementia sufferers.
The climate in this country is definitely towards asking groups what the patient wants,even goverment now is moving this way, and the move is away from telling us what we want,
you and I can influence change with our experience.
I am assured that my experience of working in the NHS,and my caring for Peg can be useful to others.
Although my journey is over there is so much that I can do to try and assist others.
Padraig
Stay with TP and pass on your valuable experience,you can help so many people to get through their journey.
Best Wishes
Norman
 

Lonestray

Registered User
Aug 3, 2006
236
Hereford
Imagine

Over the years I've seen many short commings in our local NHS. This morning I received a letter addressed to my wife inviting her to take part in a survey of service users who're in contact with mental services from the NHS. 'You have been invited to take part in the survey because you have been in contact with the mental health services'. They wish my wife to tell them how well the services work and how they can improve it!
There are 57 questions, question 56, How is your mental health right now?
The three final questions: Is there anything good about your care?
Is there anything that could be improved?
Any comments?
They even want to know which of 16 ethnic groups she belonged!
Can you imagine how I feel? I shall give thoughful consideration as to what my actions will be. I'm begining to sound like them.
One thought springs to mind, regards to any other comments? Answer: Stop wasting money on writing and posting large amounts of paper. Get off your bottom, get out, meet the people, look and listen. Lastly try looking after someone for a week, on a disability living allowance of 70 something £s a week. Padraig
 

towncrier

Registered User
Oct 14, 2007
41
Lancashire
still on the journey

I am sad to hear of Lonestray's loss and hope he can now find some peace and happiness. I hope his experiences will become widely known and lead to a better future for the rest of us who are living with our own or others' decline.
I have received and just filled in a questionnaire about mental services in my region, the North West of England. I have also added an excerpt from the journal I am keeping of my experiences and my patient's. Here is a little of what I have written to them:-
It would be wonderful if the NorthWest Strategic Health Authority achieved its declared "ambitions to develop world class mental health services." One way they might find out what is needed would be to read the experiences of others like myself and Jim on the Alzheimer's Society's website's Talking Point forum. I am seriously suggesting this in an attempt by me to make a positive contribution, despite my now almost completely negative and hopeless feelings.
It seems to me that there are too many teams of social workers with separate functions, all working away at following guidelines and initiatives and creating and circulating paperwork, but in many parts of the country, including my local authority area of Rochdale, actual performance is abysmal.
Although I am extremely tired I do not intend to keep quiet about my dissatisfactions. Currently I am trying to decide how to go about getting these aired at the most productive level.

I really hope that those of us who have been given the runaround and less help than we need from social services will continue to shout out and publicise the shortcomings. I am currently considering going down the legal route, and thank people who have sent me private messages of advice.
 

frederickgt

Registered User
Jun 4, 2005
124
92
Hornchurch,Essex
Padraig

I am sorry to hear of your loss Padraig,it so closely resembles my own,Anna was in hospital,I thought she would be safe and well cared for there,how mistaken I was,I used to hold her hand,and she would at times squeeze my fingers,at the end it was the only way we communicated.How i wish I had staid with her that last night instead of returning home at the end of visiting hours.God Bless you for the care you were able to give your wifeI wish i could have done more.
Fred GT
 

frederickgt

Registered User
Jun 4, 2005
124
92
Hornchurch,Essex
Padraig


Dear Padraig,I wish I had seen your posts earlier,things may have been different,I admire you for your courage in the stand you took.My anna collapsed on the floor at home and I couldnt lift her,that's when I called the ambulance.
I am an 80 yr old disabled veteran,so I had to let her go to hospital thinking that there she would recieve the care she needed.
How wrong I was,she wasnt fed unless I was there to feed her,she was unwashed,had nappy rash,bed sores multiple briuses when she fell out of bed.I asked totake her home,the consultant said I wouldnt be able to cope,I replied that I would do my best,and that the dare would certainly be better than she recieved at the hospita.Oh if I could have forcibly removed her,she went steadily downhill ubtil a week after her 74th birthday I got an early morning phone call to sat she had passed away now I am desparately lonely and missing her dreadfully.I hate that hospital.Be warned people.
 

Lonestray

Registered User
Aug 3, 2006
236
Hereford
When will it ever end

Dear Fred GT, Reading your post reminds me so much of the number of times in the past six years my wife was addmitted to A&E. Often I was asked if they should resusitate her. The first time I was asked was a good six years before she died. So often I was left with the impression that the medical profession, when confronted with an AD patient in the end stage, could see only one way out. I have talked a number of times on TP about, taking control. Once I did oversee or take control of my wife's care, both our lives were the better for it. To seperate a loved one from their carer/closest being, on arival at hospital, is like seperating a baby from its Mother. In the begining, I had to fight to be with the attending Doctors, but in the end they began to understand the benefit of my presence.
It hurts and saddens me to think what so many frightened souls must feel when in a strange place, being parted from the one person they are safe with, then find strange people messing with them.
Our son-in-law removed his Mom from hospital three weeks ago and took her to her home. He arranged round the clock care with hospice staff for her. Early this morning she passed away in her own home. He came home from work in the Czech Republic to support our daughter as my wife was dying, now she's there for him. Each lost their Mothers in a matter of weeks.
The most frustrating thing for me now is, trying to put over what I've learned. Time and again I'm asked what help did you have caring? When I say none, it's "What about your family?" I did not want anyone but me to do everything. In caring for Jean 24/7 year after year I consider myself to have been very fortunate in so many ways. It was a very happy and enjoyable experience and I could not help but learn so very much about the illness, plus about both our mindsets. Yes every one with AD is different, but are we not all? AD patients have a lot in common. Why should my experiences not be passed on, I looked on the bright side for both my wife and my self and found it. Padraig.
 

roger1941

Registered User
Your loss

Hello Padraig
I just read those moving words about your loss and I add my sympathies to the others who have written.
In a way I am glad to be able to write this to you after what seems a long time following your bereavement.
I speak as someone who has lost two partners in a short space of time and both experiences remind me of how other people can view bereavement.
The problem sometimes is that once a funeral has taken place others move on with their agendas and assume that we do so as well. This is not the case. In some ways the worst is yet to come and sometimes we look in vain for others to talk to about our loved ones. Even to mention their names in conversation can be difficult for others to accept. To talk about those times when the grief seems to come from nowhere and completely overwhelms us need acknowledging. Such feelings do go on for a long time even years.
In our LGBT carers group there are a number of us who are bereaved and we do things like trying to phone each other before a weekend (weekends are often the worst time) just to make sure that we have plans; we try to remember special anniversaries and phone each other; and are happy hear our loved one's names mentioned and to talk about them.
We former carers have many needs and sometimes people assume too readily that once the pressures of caring have gone, then all is ok.
Best wishes
Roger
LGBT carers group
 

Lonestray

Registered User
Aug 3, 2006
236
Hereford
Hi Roger, thank you for your kind words. Yes you're so right, I feel so alone and it's such an effort to go through the motions of living day by day. Though we have a son and daughter, plus 9 grandchildren (all grown up) the one person who's always there for me is our daughter. She visits me when she can and phones to see how I'm doing. I well understand not seeing the grandchildren, they have their lives, it's their time. Jean will always be with me. There are our (not mine) children, grand children and great grand children. Having grown up alone, then being accepted into her world, I'm back again where I started. I feel very much like the stray I started out life, only I'd learned what it meant to be loved. This is a cold loneliness, no more the touch or hug of a loved one. Once our children and grand children had grown up, I could no longer hug them.
On the 1st of this month our son-in-law's Mom passed away in her own home. Now that both our daughter and husband have lost their Moms in a short period of time, I'm hoping that their grief brings them even closed. At least he took his Mom home for her last three weeks. I'm off to the funeral tomorrow.
I wish you all well. Padraig
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
This is a cold loneliness, no more the touch or hug of a loved one
Dear Padraig,

What can I say that others haven't already said..you have experienced love ..and loss..

Some words from my schooldays come back to me..maybe you won't appreciate them at this moment..I hope they won't upset you..in this "virtual" world it's difficult to know...

"It is better to have loved..and to have lost..than never to have loved at all.."

Your love shines through..I admire you..

Love Gigi xx