I'm new on here. The reason I'm here is that I wish to share my experiences of caring for my wife. My story is a 'one off', for that is what I was referred by the medical profession. I removed my wife from a Nursing Home when she was well into the so-called end stage. That was in April 2003. She could no longer move nor speak. In addition she weighed around 77lbs, had bad pressure sores and other problems.
So upset with the way she was looked after I chose to care for her on my own, rejecting all help. By June I had to summon a doctor to visit her. He advised that I not hold her hand over night, as she was likely to pass way when I visited the bathroom or made a drink.
This is a long story, but to cut it short for now, she lived another four and a half years. She passed 12/12/07. I have kept all relevant medical records, made videos and took photos. This evidence show the changes that took place in her condition. By the time she passed she was about 130lbs.
The illness started when she was 61 yrs of age and by the time she passed she was 73. I was then 76 and we had been married 52 years.
Many people asked me to write my story and this I have done and it is due out shortly.
However the story could not just be about Alzheimer's because it is generally accepted that no one person can care for a loved one alone 24/7 365 days for almost five years. I was capable of doing it due to a background totally devoid of love or family up to the time I met a young teenage factory girl. She showed me the meaning of unconditional love. The lease I could do was to return that love. I've been blessed and privileged in so many ways to have lovingly cared for her.
Now I wish to share my experiences in the hope of helping others.
Padraig

Please post the title when the book is released, I'm interested in reading it and I'm sure others are as well.
Thanks!

Padraig, your story is very poignant. Your wife was very very blessed to have you in her life. Thank you for sharing.

Mari

Please come back and let us know about your story! I'm very interested in reading it.

I still get so very touched and encouraged by the spouse's, especially the men, who care for their other half, soul mate, loved one, unconditionally until death do you part.

Some of us women could only hope and dream of having such a dedicated, caring husband.

I intend to keep my mom at home with me for as long as I can hold up and she does not require hospitalization.

Thanks for posting your story, it has given me a renewed strength to keep going.

Looking forward to the more detailed story, as you feel comfortable with.

This is such a touching, loving story. I'm glad you found each other.

No one can say when our time is up. Only God knows.

Iris L.

Thank you so much for sharing your story. You are truly one of the special, devoted people on this planet.

Please let us know when your story is out.

I'm very moved by the responses to my post. Many may ask why am I different? Well there are too many ways to list here, but here goes with just a few facts. In 2006 whilst caring for my wife I started writing about my early life. I snatched moments while she slept.For the very first time in life, I discovered through the Irish Freedom of Information Act, (passed in 1998) that I had a criminal record! As a two year old in 1934 I appeared at Dublin DC in front of a Judge Cussen charged with 'receiving Alms'. I was sentenced to be detained for 14 years, to be served at two Industrial Schools. My name was changed in order to break all contact with family members. Suffice to say that the secrets of these child prisons was exposed to the world in May of this year. The Ryan Report into the child abuse that took place in these 'schools' took nine years to compile. The report can be viewed on the Net, just enter Ryan Report, or Artane where I served my final six years. Be careful ladies if you are thinking of looking it up. Be prepared to be shocked beyond belief.
On my release at 16yr old, I knew nothing about the outside world. I was unaware of the fact that there was a difference between boys and girls, I'd never spoken to one! Birthday and Christmas presents I knew nothing of. Should anyone try to touch me I knew to back off, if anyone tried to touch me, for I knew it as an intent to hurt. Children were used to work for free, the younger the better.
I was one very lucky person to find a very beautiful young girl who took me on for life. Is it any wonder that I would not do every thing in my power to make her happy. Whilst caring for her I consider myself very fortunate to gleam an insight to the daily life of so many women. There were times I found shopping, washing, ironing, house cleaning and cooking tiresome, but then with a wry smile I'd remember how my wife Jean like so many women had done it for years!
My first book is called 'Lonesome Stray' and I now know that it's not very well written, but then I was not educated. My new book which is better written I expect to be out by the end of the month. It's called: 'Dare to Dream.'
I've achieved much in life and was able to retire aged 54. My greatest achievement was caring for the love of my life, the girl who was my salvation.
There is so much more to come. Thank you all once again.
Padraig
Padraig

Padraig, I am sorry you had such a rough and unloving childhood. You wife saw something very special in you and you in her. I know caregiving can be hard on people. But when it is done with love the job(I hate to say burden, because if you love the person there is no burden) takes on a whole different light. You actually see all this LO did and you wonder, could I do it as well as they did.
I am sorry for your wifes passing, and I also look forward to reading your second book

Wow, And I thought my childhood was pretty ruff.

Once again though, it just goes to show that even if we have a bad learning or lack of learning experiences as a child, we can make good choices in life to become good, loving, caring people. So many become angry, bitter, selfish and even cruel as if they are owed something and carry a chip on their shoulders.

I'm glad that you found your sweetheart, love of your life, that could show you, help you how to live properly.

Once again thanks for sharing. Looking forward to more.

You're a good man Padraig

Becky,
My childhood wasn't so bad because I knew no different. The 'Nobodies' I refer to in my book; the ones with no one to visit them. We came to accept no one wanted us. Like the Monty Python sketch of the three men, the man in the middle: "I look up to him as he is superior." Turns to the man on his other side: "I look down on him, he is lower class." Came the reply:"I know my place."
The children that had it rough, were those who were torn from families at age five and over. They would have bonded with siblings and parents. Parting after their parents visits must have been painful. They also got out on license at holidays, Summer, Christmas. The Nobodies were required to tend year round to the cattle and other livestock.
In another way I was lucky, because on my release I discovered my correct name. I had been known as Charlie during my 'stay' and number 11,536. My mindset was to leave the boy called 'Charlie' locked behind those tall cold gray walls.
Mentality and physically I hit the ground running in order to survive. The mental running has stopped, but I'm still running 7 miles every morning at 05.30AM. I've spent a lifetime trying to prove myself in sport and work and somehow I haven't found me!
My wife often said of me; "You're strange", just because I would buy her presents; "Because you are you, why wait for birthdays?" I'm still left wondering why she ever married me. No matter how many times I asked her the answer was always the same; "Because I love you."
Two years before she passed was our 50th wedding anniversary. I had arranged to take her to our daughter's house for a meal. Chatting to her all the while as I lifted her into her wheelchair; strapped her around the waste. Gently I placed rubber sponges I'd made in each hand. As I knelt to strap her feet in the chair I could not resist asking: "Fifty years ago to this very day Saturday, at the church in your village we were married. After all this time would you still take on this stray? Would you marry me?" She had not spoken in years. She struggled with a very great effort, then came a strangled weak drawn out; "Yes" I was left speechless as I held back tears of joy as I embraced her. That special lifetime moment will live with me till the day I die.
We arrived at our daughter's house expecting a quiet meal with her and her husband. She had arranged a big surprise. From all corners came our son his children, our daughter's children. There were nine grandchildren with wives, partners and three great grandchildren. One of the best parts was our eldest grandson was safely back from his first tour in Afghanistan.
My wife Jean has left me with so many riches. I see her face in all members of our family, as I told our daughter: "If you ever feel you miss Mum, just look in the mirror. You are made of her, she will always be with you as you are part of her".
I suspect some will expect that I had help from family members with the caring. I'm afraid to say I was selfish and did not wish to share our precious time together.
It's a funny old world and I've found a lot to laugh at. Maybe I should share some of my perspectives on life.
Sorry to have gone on so long.
Padraig

Padraig
Your wife was so very fortunate to have such a loving husband to care for her.

I'll second jellybeans reply. Your wife was blessed to have a loving husband like you and you were doubly blessed. You found a woman who truly loved you and you both could share your love no matter what this disease could dish out.
I do not blame you for wanting to be selfiish when to came to asking for help. THe love of a good person always helps with the work.

Padraig, well now my eyes have swelled up and are leaking, especially when your Jean responded, "yes", when asked if she would do it all again. What a wonderful love story. I'm glad you were able to make it to your anniversary party.

Sounds like my mom is at the same stage your Jean was at that time, although she still talks, she was always a big talker, but not understandable most of the time. Some days her words and even sentences are very clear and even funny. She still says, "I love you too," when I tell her I love her. I know that this also, will soon be gone. But those few words, like you, will forever be embedded and treasured in my mind until the day I die.

I have several reasons why I have chosen to care for my mom in her home, but mostly I think it's because I want to spend as much time with her as I can, while I can and for her to be the best she can be. Not everyone can do this, it is difficult, but we all do what we can to deal with this slow killing disease. I don't want to miss those few audible words when they come out.

I'm also glad that you do have your family to see your Jean in them. So many here are all alone in all of this.

Nosey person that I am , did you ever reunite with your family after leaving that awful place? Are you still in Ireland?

I'm quite positive that I would like to read anything you have written about all of this and your perspectives on life. You've already been enlightening to me.

Share whatever you need or care to with us, we're listening.

Oh yeah, your running, reminds me of the movie Forrest Gump, run Padraig run. We all do what we have to, to cope with things.

Becky,
I'm only too pleased to share my story. My problem is knowing where to begin.
About my family, yes I did first meet 'the Mother' and a sister. Later I tracked down another sister and the Father. Suffice to say for now, that a strange woman arrived at Artane Industrial school (I have since discovered it was the day before my 16th birthday) to collect me. A problem arose when she asked me my name. She questioned the Christian Brother; "Are you sure this is the right boy?" He asked: "What's your number boy?" Happy to be able to answer: "11,536." She was informed that I was her son. She went to touch me I cowered from her. My only wish was to get hold of the paper cone containing candy she held and to make a dash from the room. She took custody of me totally unaware that I was, unemotionally barren with stunted development levels and uneducated. Because she didn't have a place for me to live, she handed me over to a new found 20 yr old sister to look after me. I ended up sharing one room in a slum building with her and her husband. With-in a very short while I ran away from them and roamed Dublin city streets, till I found different jobs and places to stay. By the time I was 17 I decided to leave Ireland to join the British forces. In order to sign up, it was necessary to have the signature of a guardian. For that purpose I tracked down my Father and had him sign the document that allowed me to join up. He appeared to be happily living with a woman to whom he'd fathered five children. Once I managed to scrape into the lowest level of the RAF I never again had any contact with the Father, Mother or sister. I did however discover another sister with whom I kept contact. None of these family member ever spoke of the circumstances that lead to the break-up of the family. Almost 40 years later, I received a letter from a girl telling me: "I believe that my Mum is your sister!"
The two sisters had not met in as many years and so I arrange for the three of us to meet up together for the first time since 1934. It was in the late 80s when we met at our large country home. That was a very sad painful meeting at which neither of the sisters were willing to be reminded of the past. The younger sister died shortly after without speaking of her past.
That story and others are contained in my new book; Dare to Dream. I'll let you know when it is due out. I'm expecting to learn this week. My early life story is in Lonesome Stray ISBN: 978-1-4343-1201-3. I think if the title is keyed into the search it will come up.
The words I most regret saying to my wife when we first met was my reply to: "Do you not have anyone?" When told I had no home nor knew family, she thought it was sad. My response was: "No it's not, at least I'll never know what the pain must feel like to have a parent die. I can't even begin to imagine the hurt."
Sadly that pain I was to discover one Oct evening when suddenly we lost one of our three children. Our 15yr old daughter was suddenly taken from us, killed by a speeding motorist. For the first time in my life I cried and ran like a wounded animal every day till I dropped down.
There are many lessons I've learned in life and am still learning. I've never accepted conventional life style. Each time I've been told that something was impossible I failed to see set boundaries. I defied a sport's coach by winning two national titles and representing my country. Doctors and nurses told me conventional methods of caring for my wife, but I chose to follow my own human animal instincts.
My motto is always to maintain control of my life. Fear is the enemy, it means someone or something has control. Doctors do make mistakes like the one who amputated the wrong leg of a patient. After the operation he told the patient: "I've got good news and bad news for you." "Give me the bad news." "Sorry, we've removed the wrong leg, but the good news is: we now know that the bad leg can be saved!"
Finally I'll leave you with the news that I'm conducting research into my family background and have so far discovered some unbelievable facts that reveal why no family member would talk of the past. I'm left shocked at the mindset of the Irish/Church State that inflicted so much cruelty on sections of its communities.
I was the lucky one to have found a wonderful, gentle, quiet girl. Asked to describe her; 'a woman's woman' women came with their problems, she was a good listener. Bye for now.
Padraig

Padraig,
Thank you for sharing with us. You have had a truly wonderful life of love that many never know. It does not undermine the early years but if it was a necessary step to take to enjoy that love then so be it.
I too will look forward to reading your books. True life stories are so unbelievable sometimes but that is what makes fiction so believable. Because there are more things that happen than we can every imagine.
Once again welcome and thank you for sharing.
Sheryl

lost my grandmother to alzheimers yesterday =(

quote:

Originally posted by jennabellucci:
lost my grandmother to alzheimers yesterday =(

Sorry to hear about your loss jenna.

Jenna, I was sad to learn of your loss. The only way I can gleam some idea of your loss, is having seen the effect the loss our youngest grand daughter displayed on losing her Nam. Just turned 18 she suddenly became a woman and was a great source of support.
In honor of her she had a tribute tattooed down her spine!
Because we both had a big input in her life, I can see so much of the wonderful qualities my wife instilled in her.
My own loss is eased considerably by the fact that I'm very conscious of the influence she had on my life. We became one. Though part is gone she has left me a better person.
I hope this helps.
Padraig

There is no escaping Alzheimer's of late. This week it has been headline news on TV and radio. Now I receive a copy of the report in the mail of the research by a Professor, on the use of anti-psychotics in dementia. It appears that here in the UK 145,000 patients are being wrongly prescribed powerful medication which cause 1,800 deaths a year! They are ministered for: agitation, aggression, wandering and shouting. At best they are meant to be given for a short period. I mention this because my wife was given medication without my knowledge while in hospital. When I did discover they had given her medication 'keep her quiet', I became agitated, aggressive and started shouting with good cause. She was always a very quiet gentle person. She had walked into that hospital with a broken arm (she'd had a fall) and came out in a wheelchair.
Yesterday the news reported that too many beds in hospitals were being taken up by Alzheimer's patients. They were being kept in hospital far longer than other patients with similar bodily injuries. By the time they were released their mental condition had drastically deteriorated.

My wife was in hospital for a month in 2001, that was six years before she passed away.
So here we are eight years later and they are just learning!
Then the report reveals that 55% of nurses require training in caring for Alzheimer's patients!
All I can say to these findings is; thank God I rejected all 'help', stopped all medication and took total control of my wife's care. There is no doubt that without my action she would not have survived a further five peaceful years.
I've no intention of offending anyone, but I feel great anger when I read about the accepted 'final stage' and loved ones are put through awful suffering. My wife was there; not eating, talking, unable to hold her head up, unable to move and had bad pressure sores. I turned it all around, that resulted in us sharing those extra special five years.
Because of that I wish to give back; in loving memory of my wife all I've learned by writing my book. At the present exchange rate it has cost $,4,200 to self publish Dare to Dream. I've no intention of accepting back any money. If in some small way my story helps others to learn from my experiences, I'll have done something worthwhile in honor of my Jean.
The book is now available Google; Authorhouse.com Dare to Dream. I've used my Name in Irish: Padraig De Ris.
My first story I wrote in 2006 in snatches while my wife slept; published in '07. The response from readers on finishing the book: 'what happens next'. They have the answer now. The title: 'Lonesome Stray' keyed in is enough to find it. I think it's not well written but people liked it.
I intend to keep passing on what I've learned.
How I wish I'd known what I now know at the beginning of the Alzheimer's journey.
There's too much pain in this world.

Padraig, personally, I've said, concerning so many things in my life gone wrong, "I wish I had known then, what I know now." Hindsight is always 20/20. But we always react at the time with the knowledge that we have when things happen. We can only learn from the experience, do better and hopefully help others on the journey to not make those same mistakes.

As far as the psychotic drugs go, my moms doc and myself resisted them, until my moms sanity and mine were in danger. It got to the point of either putting her into a nursing home where she could be watched 24/7 and in a locked up safe environment, in the hands of complete strangers, who may or may not care for her properly, or try a psychotic drug, first Risperadal and then Seroquel. For both my mom and myself the Seroquel actually was a calming medication. My mom who did not sleep for days and was constantly trying to get out and run away, go home, and I could not take her anywhere, for fear she would wander off. With the Seroquel, she became calm, slept at night and we could still go out on trips. It was just for a short time that I had to give her this drug.

As the AD progressed, well she got passed that stage. I knew the drug was risky, but the state she and I were in, the benefit outweighed the risk, and it worked for us.

I'm not offended at all by what you've said. Each person has to find their own road to travel and way that's best for each individual to deal with it. What works best for one, may not be the best way for others.

I'm glad the things you did for your Jean, worked out for you. You're a very compassionate, loving caring man to take such good care of your wife.

I'll look up your books.

Yes indeed, there's way too much pain in this world, but somehow, someway, we survive it the best we can.

"When you feel like you've reached the end of your rope, tie a knot, and hang on."