With respect to a family's response to an alzheimers/dementia sufferer - first, I will say, that home / with loved ones - is the best place for one suffering from alzheimers - especially if the person's first language is not english. There is comfort in familiar faces, foods, culture. Nursing homes, even if they look immaculate, are usually seriously understaffed (with no one to feed patients, wash them properly). Patients end up miserable, tied down in wheelchairs/restraints - and for those whose first language is not English - isolation/lack of proper care rec'd for lack of understanding between staff and patient. I found that alzheimers patients revert back to their mother tongue,even if they know English.

Caregivers must have support network in place - their own church community and CCAC (Community Care Access Centres) can help. Caregiver's spirituality is definately challenged as well. If for example, the alzheimer's sufferer was abusive to their family, who are now called to be their caregiver, God will work miracles of forgiveness and love, through this person's suffering (if those who were hurt are willing to cooperate). Caregivers who have pent up unresolved pain and anger issues, will suffer if they choose to care for one who has hurt them. Caring for one who has hurt you in the past, can be God's way of healing as those previously hurt, learn to forgive and love the ones who may have hurt them. Its a process. It takes time and God's grace to be able to walk alongside an alzheimer's sufferer. Daily prayer - petition, thanksgiving, praise, song - is in my view absolutely essential.

A close friend's mother has advanced Alzheimer's. They can't talk anymore, so they dance. They listen to music, and they dance. Even though there is no recognition left, there is still a connection. To me, as long as there is connection, there is spirit and something is happening at the very deepest level of our being, beyond our own consciousness. Eventually, all our brains are going to die, but I believe that Spirit or Mind or whatever remains & is our connection to one another and to God.

Klaatu - if you are wondering because you have a loved with one Alzheimer's, I'm so sorry. It's a hell of a disease.

Actually, no, Aurora, that was not what motivated the question, but thanks very much for your contribution and for your kind thoughts.

I had the pleasure last year to journey in an accountable manner with many men and women who were in various stages of dementia. In those places of silence and prayer, I was gifted with humble reminders that my own inference/assumption of what is wholeness was greatly lacking. In one particular encounter, I sat with a man with whom I had done so many times during the course of the year. All visits up to then had been silent with prayer. On this particular cold and sun-filled prairie day, I was blessed with seeing the Other - he turned to me, looked me up and down, paused and then said, "I am glad you visit." And with tears present, he retired to the place where he had been .,, I place I still am unclear about, but one where he was aware nonetheless ...

Klaatu
My Mom died last week and she had alzheimers. In a nursing home for the past 16 months or so, rarely did she recognize anyone.
Regardless of that she could remember a lot of hymns and Christmas carols and loved to sing. She was a member of her UCC choir for over 50 years so I guess that part stayed with her.
So I think she did retain some sense of spirituality.
Great post

My dad had alzheimers for 10 years and I have been with others also afflicted. He was not a pious person for most of his adult life, although he apparently was as a child. Years before his illness, he painted the "Sacred Heart of Jesus " and he "conversed" with it in his nursing home room (very last years). A priest would visit him weekly and my dad understood the significance of being nurtured by Jesus in the Eucharist,so much so, that one time he kissed the hand of the priest in thanksgiving. I would pray the "Our Father", "Hail Mary". "Guardian angel" prayer with my dad, in his native tongue. He understood all these - even when he did not know who I was.

In another instance, I was visiting a nun at another home, who was in advanced alzheimers. She would only make sounds, not words. But when another nun started singing a hymn, the afflicted nun started singing perfectly - words clear -and then she reverted back to sounds that no one could understand.

Music is very powerful, especially for those who have a foundation in faith (during youth). Singing spiritual hymns and listening to musical performances( especially with children), uplifts the spirit, praises God in pain/suffering and brings joy to the heart.

Animals (therapy dogs/cats) also bring affection to those suffering with dementia. Many, but not all dementia sufferers, talk to the animals, pet them, cuddle them, and smile as well.

I would say that if one works with Christian alzheimer's/dementia patients, give them hope with prayer (praying with them); singing hymns; reading the Word of God with them (to them); and have a priest bring them the Sacraments, Minister to them by sharing God's beautiful creation (visits to the park, therapy dogs); not to mention the obvious - just be with them, feed them, care for them, pray for them - love them. I know it's excruciatingly painful to watch someone you love suffer through alzheimers. Look at them and see the Face of the suffering Lord Jesus. God bless.

As a youth, I spent much time with elderly people. The ones I knew, their bodies were well, their minds were fading. We learned what stimulated each one. That was what we talked about. I learned to read the same "See Dick run" primer for years. A retired school teacher "taught" me to read over and over again. IThere were times we sang or they told me old stories. There were also times we just stared together. I guess the best we can do sometimes is "just be". It is like our creed, they need to know what we need to know. "We are not alone".

I'd never thought about this subject until this thread. I don't know much about Alzheimer's, save for a beloved uncle who had it briefly before succumbing to congestive heart failure. I would phone him and we would talk politics and religion, the bond that often was the fibre of our long distance kinship.

The thing is, my aunt never told me he had Alzheimer's. Every once in a while I would get a hint that perhaps a little senility was creeping in when when we would be talking about Paul Martin and it became clear he was speaking of the father not the son. But, we talked of Iraq and terrorism and religion with great clarity.

What to make of this? Treat these precious people as before, engage them in their passions and be with them. I love all the advise Prazgod gives in his post.
Singing, animals, visits, all good things.

What I read also in these posts, are people whose own sense of spirituality has been challenged then grown through their experiences with Alzheimer's victim. God does act in ways mysterious to us, but perhaps I will choose to believe these people are gifts to us to help us in our spiritual journey of witnessing other's journeys and living the way.

PrazGod you raise some very important considerations - language/familiarity being two that strike me at the moment. I think such considerations are balanced by the capability/resources of the caregiver. There comes a point in some dementia situations where an institution is better prepared/capable of caring for a person than is/can an individual. As you fairly challenge PrazGod, all decisions/support should be approached intentionally through reflection and prayer.

Blessings.

I can only speak here from my personal experience and observation. Alzheimer's sufferers are usually elderly (70 - 80+), though once I met one who was in his 50's (already placed in the nursing home with advanced alzheimers). If they have a surviving spouse, who is their age or older, and have no children to help them, it may be impossible for them to keep an alzheimer's sufferer at home. On the other hand, they may also not have the financial means of placing them in a nursing home. So many factors are involved in this. Is the person wheelchair bound? Can they do self-care? If not, can an elderly spouse assist them with 24 hour care on a daily basis? Does their home have a wheelchair accesible washroom?

The physical, emotional, and spiritual stresses of caregiving are incredible (and that is assuming they were a loving couple to begin with). It's bad enough to watch someone you love become like a child, who doesn't even know who you are. It's extremely isolating and painful. This is why being grounded in Christ Jesus is so very important. Nursing homes are not necessarily better. Miserable places - people just waiting to die. Choose a good Christian nursing home (one is in Milton). No matter how you slice it, it's very tough going. I personally would balance the tears with Christian praise/worship music or whatever you can to lift your spirits and give you strength.

As for language issues in a nursing home- this happened. Walking by one of the rooms, I heard a man repeatedly yell "boli" (don't know how to spell this right). In Polish, "boli" means - "it hurts". So I went in and asked him "where does it boli?" I then told the nurse at the nurses station. She had no idea whatsoever that he was in pain, was expressing it. So if you are going to place a loved one in a nursing home and they don't speak/understand English - make sure staff speak the mother tongue. Otherwise - don't do it. A lot of people suffer in silence.

Another important issue - holocaust survivors with alzheimer's relive the horror and have flashbacks. Nursing home staff should be trained to deal with this. I think Baycrest? in Toronto is.

klaatu

Hello,

You asked?

Is there a person still in there?

Yes, there is still a person in there. The problem in general terms is our extremely limited understanding of what makes a person compared with the thinnest sliver of knowledge we have about what individual's experiencing Alzheimer's actually perceive.

In some respects the individual with Alzheimer's has a bit of an edge on us with respect to spiritual experience.

They can relive times and places and events of great significance in their lives and experience the awe and grandeur as if it was fresh. They have no control over anything just as they did not have all control first time around.

Then there is the other side of the coin

They can relive some of the most brutal and traumatic memories of their lives over and over again also, as if it is fresh and new.

The greatest difficulty is that there is now no common frame of reference through which we can communicate with the individual so afflicted. Our understanding of time is not their understanding of time, our perception of events is not their perception of events and the layers of meaning we have varnished past events with has coloured our understanding of what really happend. Their memories lack that particular manner of refining.

We should not underestimate the power of presence for these people, even if they are uncertain about who is present and how their visitor might deeply love them.

As the angel was present with Shadrach, Meshach and Abednego in the fiery furnace so are we as we come alongside the person with dimentia. We become present for them as they walk, as if for the first time, through ancient hallways of distant memory.

They may never be able to tell us how much they appreciate it or even if they don't appreciate it and even if they do it might be hard for us to realize that in that moment the distance between realities is nil.

After my 95 year old great-aunt had a mini-stroke and recovery she experienced very mild dementia. Most frequently confusing me with her brother whose name I share. We would have very difficult conversations because she knew the script and I was improvising. I was also a teenager and did not have anywhere near the experience dealing with dementia that I do now.

What I noted was that if I read the expression on her face and reflected what I saw I did not need to supply any dialogue--she new both of our lines for that particular drama. What I provided (and I have no way of knowing how historically valid my portrayal of great-grampa was) was a loving, accepting and comforting presence.

What I took away from that meeting apart from a deep sadness that I really had no idea what we were talking about and that it was a part of her history significant to her was the young woman she was that I never could have met outside of a science fiction story.

I was taken back to the Kingdom of Fife shortly before she left mom and dad and set sail to Canada with her borthers and sisters and I saw the sparkle of an attractive Scottish lass full of life and love and joy. For a moment I, rooted in the 20th century was the key to another time and another place that she cherished so much.

Moments later we were both back in her tiny room in the retirement home she lived in and she struggled to remember who I was.

We take the bitter with the sweet sometimes.

John

Alzimers is an aging condition that happens when a large portion of a person't brain has been demented from aging. A large portion would probably be 5-10%, more would be very bad. There is still a person in there but that person has been damaged so much that it is a different person. There are people who has Alzimers that were still able to accomplish stuff. There are artists who do their best work when they become senile. Rosevelt has Alzimers when he was in power (way before he was diagnosed with it).

Alzimers changes people wo a drastic point and the person usually becomes pretty useless at advanced Alzimers (not to be mean). A good way to prevent senile behavior is to exorsize your mind regularly through puzzles and other mind games. The Nintendo DS has a game called Brain age that can help. The DS and the game probably cost $250 in Canada tax included. Anything will work though.

killer_rabbit79: "Rosevelt has Alzimers when he was in power (way before he was diagnosed with it)."

I believe you are thinking of Ronald Reagan, who was diagnosed with Alzheimer's. I've never heard that either Roosevelt (Theodore or Franklin) had it.

my mother had Alzheimer's, it was dreadful to watch her decline, I was at a workshop on the disease not too long before she passed away and according to the RN presenting the workshop, there are 67 types of Alzheimer's , that is very scary, and I have no idea which one mum had, but yes there were glimmers of joy and happiness in her eyes when music she liked was being played, or if she danced(and had NO problem with steps), one of the most poingnant memories I have of her is dancing to music from "The Sound of Music" with her and she really was in a "better time and place".

Spirituality and dementia ~ a profound question. First, I must say I believe it is safer to use the term dementia than the name Alzheimer's. The first covers a range of conditions from stroke through oxygen deprivation to the actual protein tangles that characterize Alzeimer's.
My mother had dementia. During the period of her decline I was amazed that my visits to her always brought me a profound sense of peace. How could that be? Unless of course it was the deepness of being in the presence of someone who was living in grace with the most frightening of conditions.
Formal religious practice provided blessed contact for both of us but I am convinced it only works when it draws on long lived practice. Communion was very important to my Mom. She could be sitting, chin on chest, and seemingly anaware of her surroundings until the prayers were said and the bread and juice were presented to her. At that time she became alert and seemed to glow. The communion ritual with my Mom was one of the most profound of my spiritual experiences.

THANK YOU for all of your responses. I will need to take some time (and much re-reading) to digest what you have to contribute.

Lorelei: It is true "dementia" would be a more all-encompassing term (I did use it parenthetically in my opening statement). The reason I chose Alzheimer's for the topic heading is that I thought it would be more attention-getting. As many of you know, a definitive diagnosis of Alzheimer's cannot be made without an autopsy. Prior to death, it is generally done through a process of eliminating other possible causes for the symptoms.

I conduct spiritual programs for residents in three different homes for seniors. Most of the ones targeted for these programs suffer from dementias of one sort or another and are unable to derive much benefit from regular church services. It's estimated that each of these homes has a dementia rate somewhere around 75%.

Our program is called the Spiritual Circle and consists of a 30 minute service built around a theme for the day (friendship, family, meals, etc.). We gather in small groups, 8-10 at the most. Music plays a major role (perhaps THE major role), consisting of the old-time hymns that this generation would recognize. In between, we have discussions on the topic of the day by asking simple questions of those who can respond (some can't). A little Scripture and a prayer complete the session.

The results have been immensely rewarding, for us as well as for the residents. Seeing someone who can't form a complete thought or remember what they just had for lunch but can sing all of the words to Amazing Grace or recite the 23rd Psalm with you is an experience that is hard to put into words. They may forget the whole thing within minutes after we leave, but there was a spiritual connection in that moment that is very precious.

If any of you are interested in exploring this further, we based the program on a marvellous book, "Full Circle Spiritual Therapy For The Elderly," by Howard McIlveen and Kevin Kirkland, a chaplain and music therapist (respectively) in BC, who developed the program over a period of about ten years. In addition to explaining their rationale for providing this type of service and their views on spirituality and dementia, they provide about 75 sample programs.

For further information on our implementation of it, you may refer to this article onthe UCC Web site:
http://www.united-church.ca/seniors/articles/050418.shtm

For those of you caring for a loved one with dementia, there may be insights for you in this book as well. You might find that you can apply some of the ideas on a one-on-one basis. I'm sure Kevin and Howard would be delighted if their program were to be picked up by more and more people. We are trying to spread it around Nova Scotia.

Thanks once again for all of your perspectives. I am always looking for additional insights. I am no expert, just someone struggling to help some very dear people have a spiritual life. For those of you caring for someone dear to you, may God bless you and your loved one, and remember there is always a spirit in there, even though it may be hard to see or to reach.

Some additional reading if you have an interest in this area:

Shamy, E. (2003). A Guide to the Spiritual Dimension of Care for People With Alzheimer's Disease and Related Dementia: More Than Body, Brain, and Breath. London: Jessica Kingsley Publishers.

Jewell, A. (1991). Spirituality and Ageing. London: Jessica Kingsley Publishers.

http://www.dementiasolutions.com/edge/interv9g.htm

Shalom ...