Spirituality and Religion for Caregivers and a Treatment Option for Dementia

autumn-woodsspiritual-ponderingsspiritual-jesusspuiritual-pathspiritual-wisdomspiritual-warfarespiritual-sky2spiritual-muslim-mosquespiritual-kwanzaaspiritual-hanukkah-giftsspiritual-giftspiritual-flowerspiritual-canglespiritual-buddhaspiritual-american-indian1

spiritual-reaching-lostBorn again Christian, Christian, Catholic, Jewish, Native American, Sikh, Buddha, yoga, mysticism, Muslim, Kwanzaa, meditation, prayer, cosmic power, aheist, hell, fortune telling, aboriginal, horoscopes, cults, demons, religious and others. These are just some of the words we think of when the word spiritual is mentioned.

There is an old expression. Never argue over religion or politics! Without being argumentative, please leave some of your thoughts in the COMMENT section regarding the questions below. Hopefully this will be helpful to all of us in many different ways.

We are taught that a person is ‘normal’ if there is a balance between his/her social, occupational and recreational life. Others feel that the element of spirituality and/or religion should also be part of an individual’s life and it also needs to be in balance with the above mentioned aspects.

  1. What do you think about this statement?
  2. Do you think this is a necessary and core element in the treatment of demented individuals and their caregivers?
  3. Do you think it’s too late to be concerned about the demented inidividual’s spirtitual state? Are their different aspects or types of spirituality which should or should not be used in their treatment?
  4. Do you think this topic should be included as part of this blog?
  5. Or do you think we should just cut the crap and leave this religious/spiritual stuff out?

Thanks……..David

You have the option to remain anonymous when you LEAVE a COMMENT.

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18 Responses

  1. Spirituality and Religion for Caregivers and a Treatment Option ……

    Never argue over religion or politics! Without being argumentative, please leave some of your thoughts in the COMMENT section regarding the questions below. Hopefully this will be helpful to all of us in many different ways. ……

  2. 1.
    I don’t particularly like the use of SHOULD but I do feel strongly that religion, religious beliefs, spirituality, honesty, integrity is part of our life and permeates every aspect of it and indluences us in our everyday decisions.
    2.
    I do not see it as a treatment in the sense of medication but I do believe is helps both the person with dementia and the caregiver. If we take it at its basic level we are talking about love whether we call it religion, beliefs etc and with love we have the hope to continue to our destiny and with love we can cater for our partner, freind, parent, grandparent. Without love it must be horrendous. I hate advertising but I do continually quote one advert: L’Oreal: because your worth it. Love makes everything worth while and love helps to make everything tolerable.
    3.
    This is like asking if it is too late to love. For me love is not only for life but is eternal and love is our best preparation for eternity.
    4.
    I don’t know of anything more important than love, religion, spirituality or whatever you want to call it. Of course a blog is a blog and it is up to you what to include but for me it is a must.
    5.
    I think I have answered this in 4 above. Of course i know not every one agrees but for me without Love there is nothing and Love, religion, spirituality is not just nothing.

  3. Hi David,

    I recently had a news story about dementia and spirituality on my news page, so I thought I could write what I said there here on your comments board as well as it is sort of on the same topic…

    My comment was in relation to this news article:
    http://www.2theadvocate.com/features/34112654.html?index=1&c=y

    I don’t know what others’ experiences are with regards to dementia and spirituality, but this article talks about some people’s feelings that dementia does not defeat spirituality in the dementia sufferer. I know that being the person watching the progression of the disease and no doubt often if you are a person who has been diagnosed with the disease, the seeming cruelty and unfairness of it all is enough to shake anyone’s faith however.

    Nonetheless, reading this story did cause me to recall what Dad used to do when he was in the Catholic care home for three years (ironically his roots were that he was originally a Northern Irish protestant – but he’d never been much of a religious man in my experience anyway, no doubt because he’d seen the trouble it had brought to his home country). Often when I would come to visit, we would walk together around the home. At this point Dad could no longer talk to me, and I could only guess at what he wanted me to do or understand by his actions and reactions. So when we would walk, I would let him lead, either holding his arm, or following him.

    Quite regularly however, he would take me to the care home chapel, (this a man who I had never seen go to church, except for weddings and funerals) and when he would walk in he would go straight to the pulpit area (is that what you call it?) and stand right in front of where I assume a priest would give his sermons from, turn himself to face the pulpit and then just look at the statue of Jesus on the cross directly behind it. He would do that for a couple of minutes, and then I would go to pull him away so that we could carry on with our walk, but he would firmly stand his ground, just looking at Jesus.

    So I would stand with him, and find myself contemplating Jesus as well or I’d say to him, ‘Would you like for us to pray Dad?’ and often when I did say that, he would allow me to take him towards the seats, and we’d sit for a while in the pleasant quiet and calm of the chapel, and I would pray for God or Jesus to look after him, even though I don’t go to church either, except for weddings and funerals. I figured it couldn’t do him any harm, if I prayed anyways?!

    So I don’t know if this article is right, that dementia doesn’t defeat spirituality, and I don’t know if Dad was really wanting me to pray, or if he just liked the calm and quiet of the chapel and found the statue of Jesus intriguing, maybe he just liked the routine associated with the room, as I assume that he was taken there by staff and other religious family members if sermons were held? Perhaps he just like the fact that I would shut up when we were in there!? But I do know that when I did sit with him in the chapel, that all the anger, the hurt and the sadness that I felt towards ‘whoever’ had done this to him, ‘whatever’ had allowed this to happen, used to fade away for a bit, and it made it easier for me to feel the beginnings of acceptance, when Dad was so calmly sitting beside me, gazing so serenely at Jesus….

    So I guess in answers to your questions above, I guess…if it works for you, go with it, it causes you more anguish than peace let it go for a while, afterall I think if there is a God and he made us the way we are, he would completely understand if we are angry and hurt with him for a while about this whole dementia thing, I’m sure he’ll forgive those who stray for a while or longer in the face of such a condition. As for whether this topic should be included in this blog, why not? So long as it doesn’t force religion down people’s throats, but leaves the topic open to discussion, it could bring comfort to both those who are very spiritual, it could help others find their spirituality once more, and for those who don’t think spirituality is necessary, they could then posts their arguments for that as well.
    Regards,

    Natalie
    ~:o)

  4. It’s your blog and you get to decide what you want to write about. I however will not discuss, debate or argue these issues with anyone. You start with a bad premise, stating a fallacy by giving a definition of “normal,” and then go on to presume on behalf of everyone else. Arrogance or bad writing, I’m not sure.

  5. I think the spiritual should definitely be a part of the plan for both persons with dementia and their care-partners. It should be defined on an individual basis according to the beliefs of the individuals involved. And, definitely, the spiritual needs of people with dementia are important at any stage of the illness. Regardless of a current disability, each human being is fully human, with needs for spirit and love and connection and these should be met and the individual cared for. For most people, I suspect, these needs are paramount and are, often, neglected in the medical community and the policy planning of politicians. Thank you for bringing this up as a topic.

  6. Well David, I think that anything that can aid in keeping a person connected to this life is worth doing.

    To some people, religion is a healthy part of their life, to some it isn’t. Where ever the patient and the family finds comfort that is wholesome and fulfilling is okay by me.

    As a psychiatrist, you know better than I what works. However this blog seems to be very therapeutic to you.

    What do you think of nutrition? Do you think that maybe the body is somehow not absorbing the nutrition that it needs? I wonder if heavy metals may a role in some forms of Dementia and perhaps even Alzheimer’s. Could distilled water help?

    In any case, you have helped at least one person and that is me. I do not have dementia, etc myself but I do work with people who do. You have taught me to have more empathy for them and to treat them as human beings with feelings not just things.

    As for myself, I have found prayer quite useful and calming. I cannot begin to tell you all the times my prayers are answered.

  7. David, you bring up an important point, and I hope others will give you feedback as well. In my world, spirituality, not religion, are paramount to life. How we feel about our current life, and the life to come, are topics which need to be dealt with BEFORE the mind is no longer present. When dementia rears its head, the time for spiritual thought is over. It is then when the feeling of spirit needs to be addressed. What is spirit? We can use words like love, acceptance, non judgment, non violence, etc. Caretakers can do this through their words and actions. Music and movement which touches the soul can be introduced, if it has not already. People feel/experience even when their minds are in another world…so, should you bring this up in your blog? I would think only as it relates to experience, not to mind. Mind brings in ego, and everyone believes that their belief system is the correct one. A marriage of breath and life IS spirituality. If religious ritual has always been in a person’s life, then this pattern may bring comfort in times of chaos. David, maybe if you bring your thoughts and feelings forward, others can reply.

  8. I think for many it is very important. The on-line LBD caregivers support group of which I am a member has several stories to illustrate that:

    There is the lady who dresses up with jewelry every day in case that is the day the Lord calls her home.

    Ron just told us his mom asked to have the minister come, and he “translated” for her as she told the minister she was afraid to die. The minister was able to lead her to trust the Lord for her salvation so that she no longer was afraid. What a blessing to face death unafraid.

    My mom looks forward to visits from the minister and their talks. She regrets that she can no longer see well enough or concentrate well enough to read her Bible. She misses her friends from church back home, and often speaks of looking forward to dying and going to heaven, where she will have her brain back and can think and walk and be reunited with my dad and friends who have gone on before her and be with the Lord.

    Sometimes a person may think the person with dementia no longer thinks about such things, but they may very well want to talk to someone and just can’t express it well, or need someone other than a family member to talk to.

    Linda Gurganus

  9. Dr David,
    I believe there has to be a balance between social, recreational, occupational
    and spirtitual Just my thoughts, but who determines what “normal” is.

    One can get into major disagreements about religion and when one is still
    “normal” enought to remember what one has heard and been taught. Is
    it too late? I really don’t know, here again some will think yes others
    will think no. I would have to try and get thru to the person and let God
    help with the understanding. Probably one would know if the person
    understood what was being said. I say that in reguards to the post from
    Ron in the LBD caregives group. According to him after the minister
    left his mom was peaceful, where before she was not. So we do what
    we feel God is leading us to do and leave the results up to him.

    You give us lots of food for thought, for me I would love to see it be
    a part of the blog, but that is just my opinion. My faith gets me thru
    each day being the caretiver for a 91 year old sister. Some in the
    group may feel differently, and that is ok. I just know what I believe
    God told us to be witnesses, not judge or jury. He will take care of
    that.

    I so appreciate your being here and giving us insite into your feelings
    and what we need to do as caregivers to make it as easy for you
    as we can. I printed the caregivers points, even tho I knew, I will
    leave them where my husband can read them each day.

    I had a sister that was 82 die in March this year from complications
    of LBD and the 91 year old that lives with us and LBD. A sister 66
    died in 2003 from amyloidosis. I remember reading somewhere that
    demendia was amyloidosis from the shoulders up.

    So I have already told my family “I am sorry if I get the disease,
    you will have to deal with it because I can’t help it”

    Do take care

    Jayn
    in S GA

  10. for many people spirituality is an integral part of who they are. I think the discussion should be a part of your blog. My Mother (has LBD) may lose track of many events and other things but her belief system is firmly a part of who she is. Belief should not be pushed on people but it should not be denied. if they want to talk or pray they can if they they shut it out that is their decision.
    Sharon

  11. Religion is a very large part of our lives. We want to worship according to what God wants us to believe. hence we read and study the Bible, we pray, and we talk about it. I feel going through this daily routine is good for all time, as we need Gods spirit to sustain us, and give us answers. We need his love. The ill person may not be able to communicate his thoughts, but he knows prayer, and can feel the closeness of God by the above means as part of our daily routine.
    Imogene

  12. David, your latest entry certainly triggered many intimate responses.

    Without a conscious and constant understanding of realms beyond reason I could not function as a compassionate caregiver. Blessings, mmc

  13. My spiritual practise informs, reflects & is a piece of how I approach my human condition including my Alzheimers. It enables me to do so peacefully.
    I have found that one of the consolations – even delights – of the early days of the early phase of Alzheimers for me was progress that I made after several years of zen meditation & yoga. Staying in the moment helps anchor me when I want to go rummaging in the past. Seeing the rising & falling, gathering & disbursement of all things gives me peace. I have fiound long periods of unstructured meditation more difficult for sometime – I “go into the gray” . So we have restructured my practice to take that into account.

  14. Who we are, in relation to our Loving Creator, is an important part of each area and stage of our lives. My mother, diagnosed w/LBD in 2007, is now bedbound, and disoriented in many ways. Since, as a young woman, she believed in Jesus Christ’s death, burial, and resurrection for her salvation, she is now often comforted by hearing the Bible read and by listening to hymns. We are profoundly thankful for Seroquel, which manages most of the hallucinations, yet there are times when it is God’s Word that calms her. Listening to the Christian songs and reminiscing with her about the words of the songs, is a wonderful tool to redirect her thoughts and brings up many happy memories that bring her comfort and peace.

    Thank you, David, for your blog and for your courage. You have given me insights and concepts that are making me a better caregiver and, in turn (hopefully) providing better care for my mother.

  15. D, it is never to late to think about the spiritual condition of any person, demented, in a coma, half-dead in an accident…..remember the hearing is the last to go. When you are hanging between life and death, you are so open spiritually that is the best time to ask the Holy Spirit to reveal Jesus to the unsaved person. We are 3 parts, body, soul and spirit….but the spirit and soul are living eternally…..either in hell or heaven……….the body dies….after that the White Throne Judgement for those who have rejected our JESUS! GLORY BROTHER….PREACH IT !
    Keep it balanced and keep it real………….

  16. On the one hand I disagree with some of your questions, feels like organized religious-type questions. On the other hand I do believe that there is something greater than me, than all of us. I don’t try to define it, I experience it, feel the spiritual whisper and flow around me and through me…when I get out of my way.

    My father’s dying also gave me a different perspective on what lays beyond this world that we live in. One of the last days of my dad’s life, I passed by his room to do some laundry. I saw what I thought was my partner and my mom standing by the foot of his bed, I dropped the laundry off and went back to help. There was no one there. I asked my dad if there were two people standing at the foot of his bed, he said “more.” I said I wonder why they are there, his response, “to help.”

    We had previously talked several times about the “light” he saw, he said, “it’s getting closer.” I wish I could of seen it too…he said it was beautiful.

    I’m not an organized religious type person, however I am forever grateful for those spirits of people (or whatever you want to call them) he had known and loved coming to spend time and talk with my dad and help him on his journey.

    Some may say they were just part of the hallucinations, these conversations he had with the people he saw the last several months. Love comes in many ways and forms. I believe these spirits were there to help him feel not so alone, I know he found comfort in having them around.

    I do know that I hope those spirits, including my dad, will be there for me when my time comes.

    For me, I believe the spiritual part is already taken care of, if I let it in and let it be. It is most definitely not a “treatment,” it’s taking time and space to acknowledge the love and grace.

  17. First of all thank you. My father has strong indications of Lewy Body & Alzheimer’s
    and he is using Sinemet and Seroquel which helps keep him more mobile and sleeping
    regularly. I tried playing music at sundown to quell the agitation. No type of music was
    really working until I found traditional hymns which he could recall from his upbringing
    all the way to present day in a Presbyterian Church. We are constantly reminding ourselves
    to be grateful for our blessings, to have faith that the Lord will provide, and bringing to mind
    the memorized version of Psalm 23. An important part of our routine is church on Sunday
    and we make sure that Sunday is a day of rest. I look to Jung’s idea of the “transcendant
    function” as a guideline on how to apply the higher order workings of the human brain
    to compensate for loss or impairment in lower order brain function, and then I look to
    the evidence that as the brain matures it gathers all the experience and training it needs to
    be prepared for wisdom. Wisdom is almost always linked to matters of Spirit.
    Also, neurotheology, positive psychology, evolutionary psychology, and social neuroscience
    all point toward the pro-social and life enhancing benefits of spiritual practice.
    So my vote is a resounding yes.
    God bless you and thank you again for your dedication to this blog. It has helped me and
    my Dad in countless ways as we meet the challenges of life in Lewyland.

  18. David dear,
    Thank you for such a great topic that brought such interesting and touching responses. So much of the responses echo my feelings of faith, love and hope in taking care of the one I love with AD. Without my faith and trust in our Creator, all of what I am facing would be for naught. Because of my faith I know my God will be there thru it all and will never give me more than I can handle. He said, “I AM all that you need”, and I believe Him. May God continue to guide you in your blogging and bless others on the way.
    Dorie

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