Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

22 March 2012

'Fishing for the Words'

An Elderly Couple, Jan Gossart, painted 1525-30

The other day I posted Day of Prayer for Dementia here and on Association of Catholic Women Bloggers. (A few of us priests were invited to join). The same day SherryTex posted Fishing for the Words on the latter. I am reproducing it here.

My dad has Alzheimer's.  

We don't talk about it much if for no reason other than, it hurts.
He is still Dad. He will always be Dad; but the shell of him is being slowly stripped away. Word loss creep first led to fewer letters. I've saved them all. When he visits, we get to eat together, to share the chaos that is my life and laugh a bit, sometimes it overwhelms him --which is reasonable; they overwhelm me sometimes too.

Alzheimer's is brutal and it's ongoing and it makes my heart howl sometimes when I know he's fishing for the next word, the next thought and they all get away. When my grandmother had it, I remember I did what I could to joke it away whenever possible, and I could usually make her laugh. "You always get to go new places. You always meet new people. You can claim you met anyone you want to and impress because we'll never be certain and neither will you." We had a good laugh about that as I helped her get her "doll face" on, she loved for me to draw her eyebrows.

Even late into the disease, Coco and I could still laugh a bit at this hard thing; one time she came into the dining room saying "This cereal tastes terrible." I looked at the silver tray she'd filled with granola and salsa. "Yes, I bet it did." I deadpanned. She smiled at me, she knew it was a bit of a rub. The ability to joke at it took some of the razor edge off, but this time, I can't laugh.

It's too close, too near, too sharp and too soon. Even though it's been ongoing, it still feels like a hard slap whenever we get to a new barrier of "we can't." and that's made harder by being only able to walk in spirit with my folks on this road to the cross because we live so far away.

Dad's still here and sometimes, he's really still here. He can sing with his son if his son coaxes him along and he loves his grandchildren fiercely. He knows the mass and he tries to read things. Sometimes he can.
He still laughs at movies and enjoys company and wants to participate and Mom fiercely takes every opportunity to bring him to those places and people he loves as often as possible.

So today, I am grateful my brothers and sister and I wrote stories about our dad back in 2007, capturing his habits, loves, and our favorite memories.  Now a days, I can read it and have a mental snapshot of some of the wonderful things my Dad is and always was; because Alzheimer's can make everyone else forget what was wonderful and magnificent and beautiful about a person over time, as they are less able to be present and witness to others. It is then that those that love the person who has Alzheimer's must do the remembering.

Christ understood how we remember, by analogy, by familiarity, by meals, by ritual, by words. I at the very least, am not a linear thinker and as such, can tell you the lyrics of a song but not which year the song came out. It gives the impression of someone who jumps from thought to thought, because in reality, that is how my brain operates, in lots of jumps and arcs, very little of my thought process is a grid.

I miss the hooks to old jokes and puns and memories that Dad by citing six thousand books (all of which he had read and I should read by the way) in a single conversation would prompt. I have to prompt them myself to recall his teaching me how to tie knots for a boat, to play poker and make a pina colada. He also cultivated in me a love of Catholic writers that continues to deepen to this day but that seed took a long time to germinate. When we drove across country in a car where only one side door opened when I finished graduate school, he had me read City of God aloud to keep us from growing bored on the road. I told him that sometimes the tone felt like Saint Augustine would walk through town, see something that ticked him off and go back to his room to write it up as an op-ed. He laughed. He'd send me books and articles hoping one day I'd be caught on fire by the stuff. It took, but it took the better part of the past 20 years and now, it is my bed time reading and I wish I wish I wish I could really share it with him.

I can remember him chopping ingredients for gumbo and thus the gumbo recipe. I can remember him strumming the guitar and singing, I've taught some of those songs to my children. They don't always get why I love the song "My old man's a sailor..." but that's okay, hearing their voices evokes his voice; and I get a lump in my throat at church when I hear him sing; it would make me stop singing to listen, but then he'd give me a glare as if to say, "Why aren't You singing?" because that's what we're supposed to be doing at that point.

When a person has Alzheimer's, the first thing to go, are words. They can't remember the word they wanted, the memory evoked won't come into focus, the present goes out of focus and everything is as it isn't. The world becomes a confusing tide of memory, present and unexplained gaps and holes where people and books and ideas and jokes and dreams and pains and loves should be. I don't pretend to be an expert on treatment or care or the long term process or an authority on this of any kind. I'm just his daughter, and I miss his words, his new thoughts, his old puns, all of it.

Part of my present and my past is missing with his memory, like a story he wrote for me in 8th grade. Dad wrote about my very awkward adolescence on an old computer. It was in a word program that no longer exist. So when my modern machine translates it, it becomes gibberish. The story is there, the information is there, it just can't be accessed. I love that story and will have to share it in my own words with my children; but I'd rather have them hold the pages with his words.

Alzheimer's is exactly like that.

I still can't quite laugh, my brain starts to tease about it and I wince. But I know, it is only his brain that is decaying, not his soul and recalling that, fixing on that, it does not ache as much.

12 March 2009

Day of Prayer for Persons with Dementia: 19 March

El Greco, altarpiece, Capilla de San José, Toledo, 1597-99

Day of Prayer for Dementia 19 March 2009
Feast of St Joseph, Husband of Mary
Dementia affects 700,000 people in the United Kingdom


My friend Frances Molloy, the Project Manager of Pastoral Care Project , based in the Archdiocese of Birmingham, England, has emailed me about a Day of Prayer on 19 March, the Solemnity of St Joseph, Husband of Mary, for persons with dementia and those who take care of them.

Frances founded the Pastoral Care Project in 1995 because of her awareness of the unmet spiritual needs of the frail elderly and those with dementia-related illness.

I got to know her shortly after being assigned by the Columbans to Britain in 2000 and became involved with the Project, though to a limited degree. I was struck by Frances's deep awareness of the spiritual needs of those with various forms of dementia, needs that those taking care of them were often unaware of. I was also struck by her deep Catholic faith and genuine ecumenical spirit.

Frances wrote, I was thinking about it and where St Joseph fits in . . . of course he does . . . but how to people who don't relate to saints? I was reminded of when Joseph and Mary found that Jesus was missing . . . yes, he’s missing so much in our lives. But often people share with me, as I’m sure they have with you . . . the fear when a loved one with dementia has slipped out of the house, or moved out of sight when they go shopping, knowing that they won’t be able to find their way back. So Mary and Joseph know what it felt like when someone they loved was missing.

Then there is the missing a loved one . . . ‘If only they were here now I might be able to give them more help’ . . . the sense of missing them just because love makes us feel that way.

All this is the Lord’s work I know because it has come about like a tsunami of the spirit
.

Archbishop Vincent (Nichols) has given it his blessing. Mass will be celebrated in each parish. Each school will pray. And Churches Together in England will promote it on their website this weekend.

Dementia affects 700,000 people in the UK

Two of those 700,000 are John and Bonnie Suchet (sooSHAY). John is a former TV newsreader whose wife Bonnie was diagnosed with Alzheimer's, one of the most common forms of dementia. He spoke about this on TV on BBC Breakfast on 17 February. You can find a link to this on the website of the Alzheimer's society here.

Prayers for Day of Prayer for Dementia 19 March 2009

Prayer for Healthcare Professionals


Written by Reverend Canon Edward Pogmore, Chaplain Co-ordinator, The George Eliot Hospital NHS Trust and North Warwickshire Primary Care Trust.

O Lord we pray for all those whose work is dedicated to the assessment and
care of those who experience confusion and profound memory loss.
For all who work as Healthcare Professionals in everyday care and research
into the causes of Dementia of many kinds.
May they be strengthened in their work of service with individuals, families
and friends.
Through Jesus Christ our Lord. Amen.
Prayer for the bereaved

The Joy of Your Comfort
‘Your sorrow will turn to Joy’ (John 16:20)

Columban Father Pat Sayles,
The Prayer Trust, Our Lady & St Benedict’s, Alcester Road, Wootton Wawen, Henley-in-Arden, B95 6BQ.

You promised your disciples
that our sorrows would turn to joy.
For you are alive, Lord!
You do not leave us orphans.
Come into my heart
with your consoling love;
Come into my life, dear Lord;
with the joy of your comfort.
that our loved ones,
lost to us in this life
can be found in your loving embrace!
May they love in your love;
May they know your eternal joy
and dwell in your peace. Amen.

A parish prayer

Fr Timothy Menezes, StThomas More, Coventry.

Father of all goodness,
your Son brought healing of mind and body
to show that your Kingdom is here.
In our hour of need, we look to you,
we seek to understand your purpose,
Through Joseph, the faithful and honourable husband of Mary,
you show us care and compassion in adversity,
you give us a model of generosity and care.
We pray for those whose lives we share
and who live with the knowledge of weakness,
whose memory now fades,
whose enjoyment of life’s story is changing.
Make us aware of the needs of others,
of the dignity of life at every stage,
of the collective memory that we own.
Bless those who care for the sick,
who share the journey.
Your Kingdom come,
Your will be done,
in Your good time.
We ask this through the same Christ our Lord. Amen.

A prayer for schools

Healer of the sick,
we ask you to look to your world,
to the people you love.
Create in us a new mind,
so that we may sing your praises
remember your blessings,
and kneel before you in our time of need.
We pray for those whose lives we share
and who live with the knowledge of weakness,
whose memory now fades,
whose enjoyment of life’s story is changing.
We ask for understanding and hope,
that your Kingdom of Justice
will restore all that is lost,
and make us whole.
Be with those who help the sick,
a care often unrewarded,
and those – like St Joseph – who care for others,
a care beyond what is expected,
As you, Lord Jesus, gave sight to the blind,
gave speech where it was lost,
and drove out the power of evil,
give to those who suffer with illness of the mind
the peace that only you can give.
Amen.

Here is the text of a poster, which I'm unable to reproduce here:

Dementia affects 700,000 people in the UK

Pray especially on 19th March
Pray sometime during the day.
Remember families who love dearly, and often find it difficult
to talk about the change dementia brings about.
Remember the professional services and care agencies.
Remember also the people whose loved ones died many years ago.
Some are finding it painful in coming to terms with their grief.
Grief often expressed in these words.
‘If my mother was living now I could care for her in a different way, and another familiar phrase voiced is ‘Did I love him enough? ‘

Pastoral Care Project. St Gerard’s, Father Hudson’s Campus Coventry Road Coleshill B46 3ED Tel: 01675 434035

06 August 2008

'A Joy That Dementia Could Not Crush'

I had two recent posts on Alzheimer’s and other forms of dementia, here and here. My friend Frances Molloy, who founded the Pastoral Care Project, asked me in an email if there was any reference to the spiritual.

Since then I’ve come across a beautiful article on http://www.mercatornet.com/ that does just that, A Joy that Dementia Could Not Crush by Colleen Carroll Campbell of St Louis, Missouri, USA.

The article begins this way:

The frail and elderly have an inherent dignity no disease or disability can erase.

When Ronald Reagan died in 2004 after a decade-long battle with Alzheimer's, pundits across America repeated the conventional wisdom about dementia. The former president was only a "shell" and "shadow" of himself in his later years, they said, and his physical passing was a mere formality, the symbolic loss of a man who had vanished long ago.

Those comments always bothered me, but I never fully understood why until two weeks ago, when I lost my father, Thomas Patrick Carroll Sr, to the same disease.

It ends this way:

A few days before he died, I found Dad sitting in his wheelchair, looking unusually alert. His blue eyes brimmed with tears when he spotted me and his arms opened wide. He smiled and said, simply, "Joy!" It was the last word I recall my father speaking to me, a fitting farewell from a man who lived joy with his every breath, to his very last.

Colleen Carroll Campbell is an author, television and radio host and St. Louis-based fellow at the Ethics and Public Policy Center. Her website is http://www.colleen-campbell.com/ .


This is an article about a man filled with faith, hope and love right to the end, a man who was clearly a gentleman of the old school, with a loving respect for others, especially religious sisters:


Even in his last years, after his condition forced my mother to move him to a nursing home, Dad provoked smiles with courtly bows and tips of an imaginary hat to the elderly nuns who stared at him from their wheelchairs. "Great to see you," he'd say, as he sauntered the halls. "You're the best."

Led into a room full of dementia patients, he would find his way to the corner where the most distressed one among them was muttering incoherently. Plopping down next to her, he would whisper, "We're all in God's hands" and stroke her arm until she grew quiet and calm. "I like to take care of people," he would tell me, when he could remember what he had just done.

What a delightful portrait of a person! I remember the Irish-American father of a friend of mine from the Bronx who spent his final days in a nursing home where most of the people were priests and sisters. The old man thought he was in heaven!


Each of us has a dignity and when we recognise that in those who need our assistance we will find ourselves blessed through them. Thomas Patrick Carroll Sr was clearly a blessing, not only to his own family, but to all who knew him, most especially those who were in the nursing home with him.

31 July 2008

'Dementia: the past makes sense of the present' 2

The Daily Telegraph published the second part of Dementia: the past makes sense of the present under the title Dementia part two: unlocking memories through love on Tuesday. This is an extract from a book on dementia by Oliver James. See my earlier post here.

My friend Frances Molloy, founder of Pastoral Care Project in the Archdiocese of Birmingham, England, asked me in an email if there was any reference to the spiritual needs of those with different forms of dementia. There doesn't seem to be a specific reference but I haven't read the whole book. But for us Christians, for whom our relationship with God is supposed to be the most central in our lives, the spiritual and faith dimension of our lives cannot be bypassed.

+++

Just after I posted the above I came across an article by Rosie Boycott in today's Daily Telegraph on the same subject, 'I wish the new Alzheimer's drug had come in time for Daddy'.
It has links to the two extracts from the book of Oliver James on dementia, part one and part two.

28 July 2008

'Dementia: the past makes sense of the present'

Today’s Daily Telegraph has a very interesting article, Dementia: the past makes sense of the present.

In his groundbreaking new book, psychologist Oliver James explains a revolutionary way to care for dementia patients, developed by his mother-in-law. Here, in the first of a two part-series, Cassandra Jardine talks to them both. Read the full article here.












I got to know a little about the different forms of dementia through Frances Molloy, the founder of the Pastoral Care Project when I met her at a Mass I celebrated nearly eight years ago in a nursing home in Birmingham, England, where many of the residents had different forms of dementia. Frances is originally from Rathlin Island, off the north coast of County Antrim, Northern Ireland. I was involved with the Project for the rest of my two-year stint in Britain.

The Mission Statement of the Project reads:

The Pastoral Care Project is inspired by the Christian tradition and is committed to promoting and providing, pastoral, spiritual and religious support for patients, residents, their family, carers and staff within residential and nursing homes or in the individual’s private residence. This ensures a holistic approach to all frail elderly people including those with dementia-related illness.

Frances has a passion for the spiritual needs of patients and has often come across an utter lack of comprehension or awareness of this among those taking care of older people. However, when this basic need is pointed out Frances meets with cooperation.

I have found it distressing at times to meet friends with dementia whom I knew when they were in full vigour. I remember meeting a Christian Brother who had taught me in my last two years in O’Connell’s Schools in Dublin, An Bráthair (Brother) Mícheál S. Ó Flaitile, whom I revered and with whom I had kept in touch over the years. But the last time I went to see him I nearly cried. He had been very active intellectually up to his 80s but then declined fairly rapidly. He didn’t even know me.

But on the occasions when I have celebrated Mass with groups where many had a form of dementia, or where many were mentally ill, or had mental disabilities - three different categories - I have always been very conscious of the presence of the Risen Lord who can touch the hearts of each of us. We don’t lose our dignity, we don’t cease to be an image of God through dementia, through a learning disability, through mental illness, whether temporary or permanent.



Rathlin Island