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Dementia in Springtime

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My Dad, on one of our hikes (2009)

My Dad, on one of our hikes (2009)


Loving Dad at every stage

Each of the four stages of Dad’s dementia changed his personality a little, and I find myself missing not just ‘healthy Dad,’ but I also miss each expression of who my Dad was along the road of his illness.

The middle stage brought by far the biggest changes. He lost awareness of his illness and had terrible outbursts of anger almost daily. But he could also be very sweet, loving and self-sacrificing in his own way. He appreciated beauty, loved people and cherished hopes for the future.

Surprisingly, it’s this expression of him I miss terribly. He’s in the hospital now, the disease so advanced that he doesn’t notice the change in seasons. Some days this is too heartbreaking to bear.

Dementia in Springtime

Spring and summer bring vivid memories of my Dad. He was so antsy, he always had to be active.

So every day we went for a long walk, and we’d comment on the blossoms on the trees, and all the flowers we spotted along the way, and the different animals we saw, like a family of ducks or a stray cat. Each discovery filled him with joy.

This was after his first, life-changing seizure, the one that ushered him from mild dementia into the thick of the most chaotic symptoms.

At times it was easy finding distractions for him and other times it was nearly impossible. But I could usually rely on a walk to keep him in a calm, happy mood. Thanks to his stamina, we’d often walk for hours, consuming his nervous energy and relaxing him for a time. He was always delighted by the things we saw and the people we met on our spring and summer walks.

These days I can’t walk outside without grieving that he isn’t by my side. I can still hear his comments about the landscaping we came across and about his dreams for the future. I miss seeing his face light up with joy and his insistence upon petting every dog we passed and telling every young child how cute they were.

Springtime at the Hospital

I see him in the hospital now, where he’s been for a year. He can’t talk anymore and barely makes eye contact. He’s too weak to spend more than a few minutes standing up from his wheelchair.

Whether he recognizes me is doubtful. And my heart aches that I can’t talk to him like I used to and that he can’t dream about the future anymore.

He took his last spring walk in 2010, when he was too sick to walk faster than a shuffle, with Mom leading him by the arm. It was too challenging to change his shoes, so he walked in his slippers, barely aware of his surroundings.

I spent 2.5 years building a new kind of parent-child relationship with him during that time, and 1.5 years as his full-time caregiver so Mom could work. So while I find myself missing ‘healthy Dad,’ of course, I also miss the Dad I got to know mid-way through the illness.

I suppose when he passes away, I’ll miss my Dad in the advanced stage too. Now, at least, I can still hold his hand and I can tell when he’s happy, hug him, and tell him “I love you” and, when I’m lucky, I might even hear him say, “I love you too.”

I’ve been missing him for eight years now. But I especially miss him in springtime.

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When Disability Comes to Church

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My life was turned upside-down when our church isolated my parents as Dad’s dementia became obvious. I wondered why there wasn’t an outpouring of help and compassion, and it didn’t take long for me to turn these questions on myself, wondering why I too haven’t dedicated my life to helping and showing compassion to those around me.

I’ve since come to the realization in my own spiritual journey that fearless and compassionate care ought to have come naturally to me as a Christian, by the very nature of having God’s supernatural love living inside me. I should have been a conduit for God’s love to reach others around me who were lonely and in need. What did I really mean when I told myself I believed that God loved us, that I loved God, and that I loved others?

God’s love is not passive; it takes action, it does not exclude, is not timid, and is not afraid or reserved. By definition, then, neither is the true Christian. And by this definition, my heart has belonged more to myself than to God for most of my life.

Since coming to this realization just one or two years ago, my heart has undergone major re-construction, and I find my priorities refreshingly rearranged. I used to think it took sacrifice and benevolence of heroic proportions to show significant acts of kindness toward others. These days I can say that an others-oriented lifestyle comes much more naturally when my heart is *really* in the right place… I thought I was dedicated to God all along, but one look at my self-focused lifestyle should have given me a clue to the contrary. As Jesus Christ said, “You will know them by their fruits.” (Matt. 7:16)

Scripture spells out the authentic Christian lifestyle in all the clarity we will ever need. But as my life shows (and I know I’m not the only one), our selfishness is capable of constructing the most creative song and dance around the Bible’s instructions of how to love our neighbours. It also doesn’t help that our churches rarely mention the very real consequence of failing to follow these instructions (see 1 Timothy 5, 1 John 3 & 4, and the book of James). So it’s too easy under these circumstances to live a selfish life, all the while believing oneself to be living for God.

The good news is that God will change our hearts if we sincerely want Him to. And once we’re in that place, we will have ‘eyes to see and ears to hear’, as it were, the urgent cries of people like my parents and others. This need to hear and respond wherever help is needed, is expressed by many authors as well. The following list of books is a small collection of many that are trying to get this message out:

Caring for the Mental Ill in Faith Communities
In a Strange Land…..: People with Dementia and the Local Church by Malcolm Goldsmith
Increasing numbers of people now suffer from Alzheimer’s and other forms of dementia; this book explores the experience of dementia and offers guidelines and practical suggestions for family and professional carers, and local churches.
– Synopsis from book cover

Resurrecting the Person: Friendship and the Care of People With Mental Health Problems by John Swinton
This is a profound book that addresses issues of mental health within the context of the Religious Community.

It is academically well referenced, socially relavent and further it helps to explain why Churches by and large are not addressing these elements of our general society without necessarily just unilaterally condemning them as uncaring and unfeeling. The assumption is made that many would respond better if they were aware of the issues and equipped better to address them.

The primary thrust of this book builds upon the theme of working redemption and resurrection into the lives of those who appear to be among the most ostracized and alienated within our society; namely those suffering from profound mental illnesses such as schizophrenia, bi-polar disorder, manic depression and cyclical depression, although it is by no means limited to those and in fact the general principles brought forth could be applied in other areas as well.

Intentional relationship building is a recurrent theme here, especially with those who may lack the resources, abilities or opportunities to reciprocate or indeed, may even repell or reject such overtures. The theme of Christ’s focus upon those who are poor, outcast and without the ability to respond in kind is suggested as a reflection of Christ’s ministry through his Church which must be intentionally fostered and inculcated rather than just expecting that it will happen spontaneously.

A very insightful discourse upon the nature of schizophrenia introduces this book, whcih seeks to dispel the stereotypes common in our society which sadly are reflected in our religious communities too. The theme of institutionalization which (necessarily at times) spirits these sufferers out of sight and thus out of mind is looked at and placed in the context of the need for those sufferers to build to the highest possible context of their resources and abilities toward participation and expression within the community of the Church…
– Review by Bart Breen, at Amazon.com

In the Shadow of Our Steeples: Pastoral Presence for Families Coping With Mental Illness by Stewart D. Govig
Help relieve the frustration, exhaustion, and isolation of family and friends who are supporting loved ones with mental illnesses!

From this book you will gain sound direction and guidance in helping family members who are caring for a loved one who suffers from mental illness. You’ll find many avenues of care and counseling that will greatly enhance your ability to lend support and encouragement in situations where the burden of care seems too great for only a few individuals to lift. In reading In the Shadow of Our Steeples: Pastoral Presence for Families Coping with Mental Illness, you’ll find your options increase tenfold, and you’ll become a better symbol and resource of faith for these unique families.
– Synopsis from book cover

To Love is to Listen: Growing Your Church and Your Faith Through Personal Visitation by Ray Schroeder
God’s love is shown when we listen with concern and understanding to another person, face to face. People long to feel that they are understood and valued by someone else. Jesus said His disciples would be known by this sign: that they love one another. God is calling the people of the church today to go into the community and listen-to visit in people’s homes and at their workplaces and show the love of God in person. This book will show you how to do that, and in the process you will grow in your faith and understanding of what it means to live the Christian life.
-Synopsis from book cover

All Manner of Disability in Faith Communities
Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds
As parents of a son with disabilities, Thomas E. Reynolds and his wife know what it’s like to be misunderstood by a church community. In Vulnerable Communion, Reynolds draws upon that personal experience and a diverse body of literature to empower churches and individuals to foster deeper hospitality toward persons with disabilities. Reynolds argues that the Christian story is one of strength coming from weakness, of wholeness emerging from brokenness, and of power in vulnerability. He offers valuable biblical, theological, and pastoral tools to understand and welcome those with disabilities. Vulnerable Communion will be a useful resource for any student, theologian, church leader, or lay person seeking to discover the power of God revealed through weakness.
– Synopsis from book cover

Human Disability and the Service of God edited by Nancy L. Eiesland & Don E. Saliers
A living religious tradition continually reassesses its practices. In our contemporary situation the task of reassessment must attend to the presence of persons with disabilities who are increasingly taking part in public life and therefore in the worship and work of the churches. What questions, insights, and perspectives should be advanced if people with disabilities, in all their diversity, were placed at the center of religious life and education? (…) Congregations are challenged by these writers to re-envision their actual practices of communal life and worship. This collaborative work shows that the “service of God” as liturgy and as communal accountability can deepen and mature only as the diversity of human capabilities is honored.
– Synopsis from book cover

Including People With Disabilities in Faith Communities: A Guide for Service Providers, Families, & Congregations by Erik W. Carter
The only available practical guide on how to include people with disabilities in religious communities. Erik Carter’s interest in this topic has been an abiding part of his research, and he is one of the leaders in discussion inclusion and faith. This book addresses how faith communities, service providers, and families can work together to support the full participation of individuals with disabilities in the faith community of their choice. Topics include: rationale for including and supporting people with disabilities within a faith commuity; the importance of collaboration among faith communities, service providers, families, and individuals with disabilities to establish and maintain supports; specific ideas for including individuals with disabilities and for developing a network of religious groups, service providers, and families to make faith communities more inclusive.
– Review from Amazon.com

Disability Advocacy Among Religious Organizations: Histories and Reflections by Albert A. Herzog Jr.
Gain insight into the importance of advocacy for the disabled within various religious and secular organizations.

You shall love your neighbor as yourself. (Romans 13:9) Through the years, religious organizations have worked to fulfill this biblical mandate. Disability Advocacy Among Religious Organizations: Histories and Reflections chronicles the progress of different ministries’ advocacy for the disabled since 1950 as they worked toward fulfilling this mission. This enlightening history of several religious organizations’ efforts charts the trends in advocacy while offering readers insight into ways to assist people with disabilities both within religious organizations and in society. Issues are explored by drawing upon numerous documents, communications, and in-depth reviews of the advocates’ work.

This book draws together in a single volume the stories of various religious organizations and their struggles to advocate for the disabled. Because of society’s tendency to isolate and fear them, special needs individuals such as the mentally and physically disabled have long found it difficult to be accepted, understood, or to receive proper care. However, ministries strive to be advocates for all of their members and their needs, including education, treatment, and appropriate legislation. Disability Advocacy Among Religious Organizations: Histories and Reflections recounts the steps organizations have taken to focus on ending isolation and fear through inclusion and appropriate care of members with various disabilities. These historical accounts examine the depth, breadth, and on-going need for disability advocacy in religious organizations.
– Synopsis from book cover

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