Mom's Dementia

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Last week I did something that I have never done before in my life. I fed my mom.

Of all the things I imagine doing with mom, feeding her is not on the list. Taking her out for lunch, having coffee with her, giving her a birthday gift, sharing a laugh together, it’s easy to imagine these activities, but not feeding her.

For the past dozen years, her dementia has slowly taken away her ability to reason and to remember. A number of years ago, she forgot how to make a pot of coffee. The condo association insisted that we disable her stove to prevent a fire. About four years ago, the four of us kids moved her into assisted living for her own safety. None of us are in a position to have mom move in; still, that hurt to move her into a “home.”

Since that time, we have had to move her two more times. We hated to do it. We read the literature about how older people grow more disoriented with each move, but she couldn’t stay put either. She wasn’t safe in the condo, so we moved her to a room in assisted living where she had considerable independence and where she could keep Maggie, her cat. Then the staff started finding her outside, disoriented. She had to move again to a place where they could keep a close eye on her. Maggie moved in with my sister when mom made that move.

Four years ago we put her name on the waiting list of a good, Christian home for people with dementia. We knew the time was coming when she would need a locked unit and intense assistance. When her name came up, we moved her there. It was God’s timing because mom needed the level of care they give.

Named after the Good Shepherd, mom’s new place has staff that respect the residents and treat them with dignity. Nursing and dietary keep a close eye on her mental and physical state. At a care conference last week, they even showed us kids a graph of mom’s intake for the past month broken down by breakfast, lunch, and dinner. All three graphs show a sharp decline.

Little wonder, lately mom’s been refusing most food and liquid. She’ll eat and drink only if someone feeds her; she insists that she’s full. Decreased intake of fluids and food shows that she is in an advanced stage of dementia.

The first few years of my life mom fed me, first from her breast and from a bottle, then from a spoon. Not that I remember, but dad didn’t do day to day care for babies, and I didn’t die. Mom must have fed me.

I felt awkward putting food into her mouth, raising a coffee cup to her lips. I did it, because it’s a very, very small way to thank her for all that mom has done for me. Not that I'm bragging; out of the 21 meals mom sat down to eat last week, I fed her one of them.

It hurts to see mom so helpless and needy. We know her end is near. I thank the good Shepherd for his loving attention and care for all of his sheep, including mom. Someday soon, mom’s family will have to say good bye to one of his sheep, and he will welcome her warmly into his green pasture.

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I'm sorry Mark, God bless you

Guide

kelib, thanks for your concern.

Thanks Mark for posting this touching post. I'm sorry for you and your family about your mom's condition, and I said a prayer for you. But thanks again for sharing this. I believe it is through moments like these that sometimes God shapes us profoundly. Henri Nouwen's image of the Wounded Healer always sticks with me at times like these. We can heal others through our own personal wounds. Blessings.

Guide

Dementia runs strongly in my mom's side of the family. So of course I wondered over the past few years (with dread) whether this might be the way I'll spend my final days as well. As mom's dementia has gotten worse, ironically, I have grown less concerned about experiencing the same end myself. With the help of some medications to calm her anxiety, she has been amazingly content and good humored most of the time. She's in a good Christian place where people genuinely care for her and the other residents. She is comfortable overall. Sometimes it seems that the biggest discomfort with the dementia is not experienced by my mom, but by we who love her. Maybe, if we took our cues from her, we would be less anxious about it as well. Could that be one of the blessings that God is bringing through this decline in my mom's life - a way in which the wound of seeing my mother's decline has brought me just a little more trust in my heavenly Father? Maybe.

Mind you, I'm not saying that God allowed her to get dementia for my sake. Not at all. But I wonder if this is one of the collateral blessings that God is bringing to mom's family through her dementia.

Mark you are so correct. My disease has brought many blessings for my family and me. They are hard to see at first but consider how many fathers get the chance to be envolved with their kids that our work draws us from. You are looking at the right reality as your mother is being claimed by the Lord. Mark, Thanks for sharing,

Hi Mark, thanks for bringing this up, it seems still a bit of a taboo, even though there are many suffering from dementia, not to speak of all the relatives, like you, who are so closely connected with it. My oldest sister, in Holland, had a form of it, it took 5 years after being diagnosed, We from over on this side of the pond witnessed only a fraction of it. Unfortunately it had some bad effects on her close family members to this day. When I was reading your article I remembered hearing a song on the radio, ordered the cd, which I can't find at the moment, it is not a christian song but so, so compassionate and fitting I found. It is on the net, the artist is Shirley Eikhard, the songs title is "Emily remembers", Strength and blessings from the Lord, John.

Guide

John, what a touching song. Not many popular songs are written as odes to people with dementia! Ms. Eikhard gives a beautiful gift to all of us who have a loved one with memory loss.

In the spirit of sharing, here's a link to a Parade Magazine article from yesterday's issue, "Unlocking the Silent Prison." The main point of the article is that research has shown that people with dementia find written communication much more useful/memorable than spoken communication. For example, one person wrote on a note for her dad, "We are going to the doctor," instead of just telling him. The written note made it possible for him to comprehend that they were going to the doctor, and he didn't repeatedly ask where they were going because he knew. I'm going to try this with mom. 

Mark, glad to have passed it on, it's a song that keeps on giving,drawing tears as well. Thanks for the link to this article in Parade magazine, it blew me away reading the results of this study trying such a simple solution. Would this be something we can post somewhere in this website? it seems like such a useful tool. I think that I will print up something for the older people (of which I am not a member, for another 7 months!, I do co-organize the meetings for them though, but that's another story how I got that job one and one half year ahead of schedule). Greetings, John.

Guide

Great idea. I just did.

Broken link fixed, sorry about that!

John and Mark,  I was pondering on your stories about your loved one's dementia. It struck me that there may be a hidden blessing in this. My grandmother was in a dementia state for 8yrs. but considering how much she must have hurt, maybe the Lord was being kind by removing her reality.  I know it's painful to watch, I believe Jesus meets his believers that suffer.

Thanks Guys for sharing

Ken

Maybe so Ken, and no doubt that the Lord is right beside them, sometimes we people can have funny thoughts about God's love and nearness when someone is "Crazy" as we used to unkindly call them decades ago. But, boy, if you hear stories of Jews that were in concentration camps and saw what was happening around them, and then as the disease progresses, backward in their memory, they remember this as if it is in the present. I deliver to a nursing home and a lady in a wheel chair sat there crying, I asked what the matter was, she said, they are not going to shoot me today? Wow, is that a shock when you hear it, makes you near cry.

Guide

John, I never thought much about how one could reexperience life from one's younger years as memories regress. Could bring horror (as you describe) or joy depending on what is stored away. Also, could bring a questioning of one's salvation, if one's memories regress to the time before one received Christ. John Swinton has written an outstanding article reflecting on what it means to be a person when one loses more and more memory. He says, "Persons are not defined by what they do but by what they are, or perhaps better, as David Keck puts it, by whose they are.3 The paper develops a practical theological critique of contemporary notions of personhood as they relate to the experience of dementia and argues for a revised understanding centred in God’s commitment to human beings which is not defined by doing but by being with and for the other." (John Swinton, "Forgetting Whose We Are: Theological Reflections on Personhood, Faith and Dementia" Journal of Religion, Disability, and Health, Volume 11, Issue 1 April 2007 , pages 37 - 63)  The whole article, which can be found by searching for "dementia" at the Journal of Religion, Disability, and Health, can be read for free, at least until the end of November. 

Hi Mark, I can tell you some of what it feels like, it is scary and isolating. But so far Jesus is there with me. The other thing you may want to know is that scary parts don't stay because you forget. Everything is in the moment of what you are doing. God takes care of you but it is not easy. It is harder on my wife and kids who have to compensate for your lack of memory and social skills.

Ken

Thanks Mark, I better get going on it!

Mark -- First of all, thank you for all you do for people with disabilities and for bringing mental health out into the open with your posts and articles.  Unfortunately, our church didn't do much with the disabilities Sunday.  I had some initial ideas to share with our pastor, but I ended up struggling a lot around that time and never shared them.  You wrote the following in an earlier post:  "John, I never thought much about how one could re-experience life from one's younger years as memories regress. Could bring horror (as you describe) or joy depending on what is stored away. Also, could bring a questioning of one's salvation, if one's memories regress to the time before one received Christ."

I am an adult survivor of some pretty nasty childhood sexual and physical abuse.  The abuser was a much older close relative who was very messed up when he returned from the war in Viet Nam.  He admits what he did so there is no question all of what I remember happened.  But, he is like many of the other veterans of that war who returned “messed up” or on drugs or addicted to alcohol.  I was quite young when he came back home and the abuse lasted for years.  I have Post-Traumatic Stress Disorder and Depression.  When you talk about not thinking about how a person can re-experience life from one's younger years (like the person who was in a concentration camp), you also need to think about people with PTSD.  Experiencing "flashbacks" and having recurring memories that sometimes include actual physical feelings (not just emotional) are a symptom of PTSD.  PTSD isn't talked about much in the first place because it is a MENTAL illness and there is still A LOT of stigma out there -- even in churches which SHOULD be a SAFE place for people with ANY type of illness.  Also, many people only think of PTSD happening to soldiers serving in active combat.  PTSD is very common among survivors of childhood abuse, both physical and sexual.  In certain types of individuals with a family history of mental illness (depression for example), even the death of a loved one or seeing a car accident in which someone dies and surviving natural disasters or something like the trade center collapsing on 9/11 can cause a person to develop PTSD.  Rescue workers and police routinely receive counseling following a disaster or terrible accident.  A nephew of mine is a deputy sheriff in our county.  Also one of my brothers was the first on the scene of a terrible semi accident and all the witnesses were included in group therapy to avoid them developing PTSD.

I've been in counseling for quite a long period of time.  I can thank God that the childhood memories were stored away in my memory until after my children were in high school.  I was able to raise my children to high school age without having those awful childhood memories to deal with.  There are specific circumstances that caused my brain to block the memories out until about 30 years after the abuse ended.  Even now, years after the first memories came back (originally triggered by a situation I was in as an adult that gave me the same inner feelings as during the abuse), I still have flashbacks and new memories of “episodes” occasionally.  Being in very stressful situations (or just having a lot of stress) can bring setbacks and some people with chronic PTSD relive these awful events of our lives over and over again.  It is very likely the person who abused me had PTSD himself when he returned from Viet Nam.  There is a high level of PTSD and depression among our servicemen and women and veterans today who are serving or have served in the middle east (or previous wars).  It used to be called "shell shock."  We need to continue to pray for our soldiers and veterans!  It is also important to realize that PTSD can be a result of other life situations beyond war.  I have been in counseling with one of the top doctors in the state that specializes with PTSD resulting from childhood sexual abuse as well as pastoral counseling.  I have been able to forgive my abuser, but I still cannot be near him because it is a trigger and causes setbacks.  I also remember that the abuser was really a "kid" himself and that he did not want to go to war – he was drafted and went to Viet Nam at the age of 18.  The things he went through and saw there were horiffic and awful.  I pray for him since his own life has not been easy.  Other older relatives tell me the abuser was a totally different person when he came back from Viet Nam.

I think as we pray for people who experience dementia and physical disabilities, it is important to remember that many people in the US today (and in the CRC and also RCA churches since I’ve been a member of both) have gone through past life experiences that still cause a LOT of pain in our lives today.  PTSD wreaks havoc with relationships – sometimes that also includes relationships within the church family.  Some are caused by stigma, others simply by lack of trust on the part of the mentally ill person or the other person involved.  The most important thing is to let people with mental illness, as well as physical disabilities, use their gifts to the glory of God – we need to feel accepted and loved.  Often, we know what is best for us even in the midst of our struggles.  People need to show THEY BELIEVE IN US because we can't always believe in ourselves or our abilities.  We need to at least be given a CHANCE to succeed in church involvements, activities, and responsibilities.  We can handle involvement and responsibility most of the time and we need to be accepted even if we need to back out of something for an episode of MENTAL illness just as someone with a physical illness would be accepted.  Mental illness is caused by physical changes in the brain.  Our illness when it flares up at times should be an acceptable “excuse” just like the flu or a diabetic having low blood sugar.  We take medication for mental illness, just like diabetics take insulin.

It is extremely difficult for people with mental illness, especially survivors of childhood sexual abuse, to trust ANYONE – even God at times.  We may not always be perfect and may not be as capable as we once were or it may take us longer to do things.  At times, we may need special "accommodations" like people with physical disabilities, but we are the SAME people we were before we developed a mental illness.  Many of us still have the same skills and talents – gifts from God.  It may just take us a little more time or practice, we may need to receive communication and instructions in WRITTEN form (like you mentioned with your mom's dementia), or people calling or doing extra little things to help us remember.  Mentally ill people need to be given a CHANCE.  If things don't work out, someone else can always be found to finish what we tried to do or do it next time.  My pastor has told me many times that he cares about people more than programs.  That is important for all of us to remember -- whether or not the people we are involved with in church have any kind of disability.

You also wrote about how remembering previous life experiences can affect a person's faith – and someone's belief that God loves them.  I struggle with that almost every day because sometimes my brain doesn't always do what I want it to do.  The devil is in there working to win my soul.  Deep down, I know I believe what the Bible says and know God still loves me – I believed that my entire life before the memories came back.  Sometimes it is even hard to read the Bible or anything for that matter.  I know I believe and need to trust God, but I still have doubts.  I asked Jesus into my heart in second grade because of my Sunday School teacher that year.  Please let your Sunday School teachers know how important they are in the lives of their kids!  Thankfully, I have a few close friends and family who are reminders of the good things in my past and my life now or who help remind me if I get discouraged.  I will forever be grateful to my current CRC pastor, who has helped me and my family tremendously with faith and relationship issues.  He serves our congregation with amazing dedication and works tirelessly.  He is always providing scripture passages and I know he is a constant prayer warrior for all of us.  He sometimes repeats the same scripture and reminds me of God's promises over and over again.  A survivor of child sexual abuse needs to hear this more than one or two times as we face the ups and downs of our mental illness.  I am thankful he is willing to take the time to do this.  His wife is very supportive as well and I consider her a caring friend.  They both accept me the way I am.

I do think the CRC should consider offering pastors more training in helping adult survivors of childhood abuse.  When I first went to the CRC website, it was encouraging to see there was an actual “department” concerning Abuse.  It was discouraging when I read that mainly that department is there to protect pastors or other church leaders (or church councils or the church itself).  I realize having structure and policies does protect the church children, but it is much more common for abuse to occur outside of a church setting.  I wish there would be more literature and inservice training to pastors, church leaders, and congregations about HOW TO SUPPORT child abuse survivors.  It would be nice to have more faith-related resources available geared toward adult survivors of sexual abuse as well.  Many people (including in my own church) have an abuse history, but are afraid to talk to anyone or seek help.  It took me a long time to talk openly even with my pastor.  He is a pastor, God's representative, but yet I struggled for months afterward worrying about what even he thought of me.  Often, especially in cases of incest, the victim carries that secret knowledge within themselves because of shame and fear of what people will think.  However, it’s amazing... if you share your story with a few other church members, you will find that many others have been touched by the same kind of pain I went through in their childhoods (even within our small congregation).  Everyone’s “story” is different, but all of us felt or still feel the same feelings at times – and the same stigma.  Childhood sexual abuse is much more common, especially in “upright religious families” than most people like to admit.  I grew up in a very strict Christian home as did the other church members I've talked with.  I think more support needs to be given to the people who work with survivors/victims in our churches, other than just teaching pastors/church leaders how to protect themselves in a church setting or telling them about legalities involved.  Ninety percent of childhood sexual abuse victims were abused by a relative or friend (someone they knew).  It is important to keep kids safe at church – but it is also important to help abuse victims and survivors regardless of whether or not the incidents occur with a church leader or at a church/parsonage or outside of church.  Parent education is also important -- and I wonder if it might even be helpful for children to learn about "safe touching" and keeping themselves safe from strangers in a church related setting instead of just in school (public or Christian schools).  Not all parents find it easy to discuss these things with their kids.  A Christian perspective could be very helpful for some families.

Due to stigma within my former church and even sometimes where I attend now in the CRC, I have doubted my faith and beliefs at times even more because I felt stigmatized by members of my church family.  These were/are CHURCH MEMBERS that have said or done hurtful things.  If a person doesn’t feel safe 100% of the time in a church setting, why would we ever feel safe anywhere else?  Safety is extremely important for people who were abused as children.  The actions of a few seemingly "uncaring" church people, impacted my faith tremendously more than anyone outside a church setting could.  My pastor and a few close friends (church and non-church) continue to keep my faith from dying completely.  I have been fortunate that my pastor has sought out educational opportunities and reading so he can better help me and others like me in our church.  He has been wonderful and some church people have been also – if you get to know people and share, there is much more in common (including hurtful experiences in our past) than most would realize or admit.  One in four girls will be sexually abused before she turns 18, 20% of these are under the age of 8 when the abuse takes place or starts.  There are 39 million child sexual abuse survivors in the US.  Sixty percent of pregnant teenage girls were victims of child sexual abuse.  (As Christians, we need to keep this statistic in mind when we choose to make judgments about these girls!)  I am including links that provide a lot of good information and statistics that are really scary as we think about our own children and grandchildren.  Ninety percent of all child sexual abuse is committed by a family member or by someone else the child knows.  Most often they are parents, siblings, uncles, nephews, cousins -- and this includes Christian families.  The websites are: RAINN (Rape, Abuse, and Incest National Network) found at http://www.rainn.org/get-information/types-of-sexual-assault/child-sexual-abuseand the Darkness to Light website which is http://www.d2l.org/site/c.4dICIJOkGcISE/b.6035035/k.BDE1/Home.htm.  There are many more helpful and legitimate websites as well.

Mark, thank you for all you do on the network and for supporting people with ALL kinds of disabilities.  I find comfort in many of your posts and those of other individuals in the disabilities area (and other posts as well).  I have been a reader ever since the Network was started (in several areas not just disabilities).  I apologize for writing so much here.  Perhaps these thoughts have been building inside for a long time.  It took a while to build up my courage to post because I am also kind of afraid of people I don’t know, especially men and especially what people think of me when they find out I was abused AND that I have a mental illness.  My self-confidence has also taken major hits.  And I, like most victims of sexual abuse, am afraid to share my past even though I am constantly told “you were the child and are the victim, the abuser was an adult and a Christian adult at that.”  I guess I felt safe writing this here since I can remain anonymous. 

Most of all, I want to praise God for bringing me to the CRC church I am a member of now.  I’m not sure where I would be (if anywhere) had I not “found” my current pastor and church family by searching for church websites in my community.  Pastors, please keep your websites current and make sure you sound welcoming to people from ALL walks of life, especially show the LOVE of God through your website.  That is what drew me to contact my current pastor and then visit his church.  The website did not sound judgmental at all, but stressed acceptance of all people and God's love and grace, which is what I really needed to hear.  They said what to expect -- and that they didn't care if you didn't come in a suit or dress -- they just wanted you to give their church a try.  They acknowledged they, too, are broken people and make mistakes, but that all of us are forgiven by God's grace.  I especially thank God for Jesus who came to earth during this Christmas season to be the true Good Shepherd.  I thank God for my current pastor and for all the pastors who work so hard to care for their flocks like Jesus would.  I also thank God every day for a husband who has stuck with me after the memories and mental illness started, even though my illness makes his life difficult sometimes.  I know he struggles at times with some of the changes in me since the memories came back.  At times life isn't easy for the spouse and children of a person who is mentally ill and also happens to be a survivor of childhood abuse.  I honestly think in some ways, it is harder for the family of a chronically mentally ill person than most physical health issues.  Physical issues are often "cut and dried" after trial and error with treatment and a lot of medical research.  The human brain is one of God's most amazing creations, if not THE most amazing.  It sets us apart from all other creatures.  No one really totally understands how a person's mind works or why we sometimes have the thoughts we do.  It's important to remember to pray and care for the spouse and family of a mentally ill person, too.

Guide

B, thank you so much for your comment because it helps me and others get a deeper understanding not just about you, but about others too who are living with PTSD. For churches seeking to minister to people with PTSD, the Calvin Institute of Christian Worship has a fine collection of resources including some ideas for worship ministry and suggestions about use of the lament psalms. See http://cicw.cc/search/results.html?q=PTSD&btnG=+

Also, I just read an insightful blog entry by a Christian who has dealt with depression and is frustrated by the "happy gospel" presented in so many churches. See https://laurelville.wordpress.com/2010/12/08/lifelines-and-the-happy-gos...

Mark

Thanks for sharing B. Mental issui's are the hardess thing to deal with and most who suffer , do so in silence as you say. Feel free to talk any time, I to have many mental issue;s to as a result of brain damage from MS. I feel your pain from abuse too. We don't have to hang our heads or take the back seat when it comes to life. I am very open about my limitations and if I get negative feedback I confront it on the spot. Most people care but are don't know how to help. I found you need to accept who you are and if that isn't good enough for your peers that;s there problem. B , I'm praying for you and I hope you stay in contact

Thanks

Ken