Tag Archives: World Alzheimer’s Month 2016

Life is fragile

Thanks to DAI member Maria Turner-Hauer for highlighting this quote on Facebook today… it is a timely reminder to us all, and a worthwhile post for our daily blog series for World Alzheimer’s Month 2016 #WAM2016 #DAM2016

Live every day as if it’s your last, just in case it it.

Be grateful for what you have today, tell those you love that you love them (often), and be kinder than necessary as we usually never know what someone else is battling with.

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Dementia and religion

ken-clasperDAI member and friend Ken Clasper has been writing a blog for many years on his experiences of living with Lewy Body Dementia. A recent one on how dementia may affect a persons religious or spiritual life was very interesting, and we thought it worth sharing here.

Thank you as always Ken, for your terrific insights, and willingness to share them with the whole world.  #WAM2016 #DAM2016

Memory Problems and Religion

By Ken Clasper, first published on 9 September 2016.

“The other day I was having a conversation with an elderly clergyman.

We were discussing various things, and then I said that I no longer attend churches because the services are all so very different.
He questioned what I meant by this, not pushing his views, but he was interested in my reasons for giving up my religion.
I say giving up my religion!
But I am still a Christian, even though I never attend a church service these days, and as far as that is concerned, I like many thousands of others are still very religious even if we no longer go inside a church.
It’s a long story I said, but it started around 12 years ago when I realised that my memory was going.
Until this time I has always been very religious, and as a boy in the church choir, I would attend three services perhaps each Sunday.
As an engineer I would go to church, but I would carry a pager for emergencies, and would leave the service if it went off.
How ever 12 years ago I started to forget how to do my job, something which shocked me, and I got very distressed because I did not understand what was happening.
All of my electrical training was disappearing, and it felt as if a virus had wiped my memory completely.
I was then very ill with Pnuemonia and my memory took a hammering again.
One day I went to church and realised that I no longer remembered the Lords Prayer.
I was totally devastated at this, and try as I might, I just could not remember the words.
When you forget the things like this, that you learnt as a child it can be very upsetting, and even worse when coupled with forgetting his to do your job.
After trying for a few months, going over and over the words, I started to get to grips with it, and I felt really proud of myself.
However the next time my wife and I went to church I realised that the words of the Lords Prayer were totally different?
But I said I will push myself to go in the hope of getting the words right.
But then I heard that the church used a different version of this Lords prayer at every service, and to make things even worse, there were occasions when they would sing it.
I had learnt to sing and follow music as a child, but now I find it difficult to read the words while following the music.
As a boy chorister I remember singing Handles Messiah in Durham Catherdral. This was done by our own church choir, the Cathdreal choristers and another choir.
I vaguely remember this, but now I am unable to sing properly, and unable to read music.
In a vane attempt to sort things out, because memory lose, is something that thousands struggle with, I spoke to the local priest, but he just shrugged his shoulders and said that he could do nothing about it.
I then said, what about all of the elderly congregation with memory problems, people who attend every week, and pay your salary.
But I got no answer. So obviously the elderly and those with memory problems are nothing to do with the church.
To add insult to injury,  I was once accused of staying with the past and not keeping up with modern times.
But we were taught the original  forms of service and prayers as children, yet here it was being thrown out with the bath water so to speak.
….
Had it not have been for my daughter telling me about voice activated computer software, I would not be using a computer to keep myself active these days. “

Go to his blog to read the full post…

 

Note: Ken’s blog was forwarded to a chaplain friend of DAI’s in Australia as we felt it would be of interest to him. He felt it might be helpful to send us this his response, which I have shared below.

“This makes interesting reading to me.
It is a bit of a re-mind-er of some of the battles I have had on the same theme. I always used the ‘old’ familiar version of the Lord’s Prayer and other common worship liturgy when doing services in Aged Care – and especially with people with dementia in so-called ‘memory support units’. I found that the poetic resonance as well as the known words helped, or seemed to help, people connect into a more meaningful experience of worship. (I now have some questions about worship per se.)
I think that the writer touches on something important.
This is the desire to connect with the emotional, affective and experiential aspects of his (former) faith practice. While there is clearly frustration at not being able to remember things from his past religious practice, the essential component of that experience is perhaps still valued and known to him. It is unfortunate that so much emphasis is placed on getting the words right and in the right order when it really is all about a sense of being able to ‘rest in’ the comfort and care of what those words are attempting to express.
When the actual words are lost to us, the meaning that they impart at a deeper, more spiritual level may remain. Yes, people with dementia forget or do not have the format available to them anymore but the vehicle to the deep things is in the pathos, rhythm and mood of the language. It may not be enough to say that remembering precisely no longer matters, but it has always been the case that the experience has been the transforming thing. How often are we moved by worshipful music and choir renditions in languages we do not know. It makes me wonder if in fact the writer may find something in deliberately joining in or listening to worship that is in a language that has always been totally unfamiliar – Fijian choir harmony or old Latin?
The other side of all this is the way nearly all Judeo-Christian story has revolved around memory. I think the church did a good job once by re-telling it’s story in familiar liturgy and readings but with all the ‘smoke and bells’ and ‘theatre’ accompanying it. That way it was a total sensory experience. With the constant trend towards using only relevant more modern language the nuances of the craft of worship forms has been lost – or weakened.
It is time that the churches recognized the limits of didactical approaches with their dependence on perfect memory (even quasi-legal) and re-discovered the value of sensitive emotional and experiential forms. (Worship forms should be designed around the people not the leaders.)
The writer may be helped by an approach that looks at this as just another change in his life. We go through many changes – cognitively, socially, emotionally and mostly get through them with a little help from our friends and family. I am guessing, but even though changes in the past may no longer be a clear memory, there is a lingering awareness that we have lived through many changes.
This has all been a bit long-winded, so the nutshell version is: go for the feeling, it has always been what has given the ‘facts’ their relevance and vitality.”

Understanding Aphasia

For our daily blog series during World Alzheimer’s Month 2016 #WAM2016, we are adding this short animated video, which give a very reasonable insight into what Aphasia is and how it impacts those of us with dementia or other brain disorders (e.g. following a stroke).

Aphasia: The disorder that makes you lose your words – Susan Wortman-Jutt

Remember me, by Mick Carmody

Remember Me

By Mick Carmody #DAM2016 #WAM2016

Remember me I am the one who used to be here
I am the one who you spoke to without fear
I am the one who you listen to but do not hear what I say
Remember me I am the one you used to love now for which I pray

Why don’t you call, why don’t you talk
You avoid me when you see me when you walk
This cruel disease robbed us of love and friendship that we used to share
Back then you used to care

Remember me because I am still here
I am told that you do no longer know what say
Simply start with, hello, is what I hope and pray
Remember me please remember me

Thank you Mick Carmody for sharing this wonderful poem, and for the story below for our continuing series of blogs for World Alzheimer’s Month 2016, themed ‘Remember me’.

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“Remember me my old friend, before I was diagnosed we were so close, sharing everything in our lives as one. We were as close back then.

You know we used to share everything just like good friends should do. We no longer go on picnics with our families and kids, or do you all go and not include me.

All my old workmates avoid me at all cost, now that they know what caused my strange behavior and that I could not remember anything I had or had not done.

Now my phone, my car and my life all sit idle because nobody remembers me. Out of sight, out of mind is what hurts me the most.

I look at my mobile phone contact list which says two hundred and fifty three in total of I call just three. That is my mother, my wife and me.

I have been diagnosed with a type of dementia which affects the two frontal lobes in my brain. I can still talk, walk, run, play and have fun.

Remember, I am still here I am still me. I am still the same person as you knew back then. The way I act and speak are still the same. My brain is the one that is causing the problems, you see I   have an incurable disease, there is no cure, something is eating away at my brain but hopefully it will be years before I am affected so much that I cannot walk and talk.

I may knock things over and drop other things to numerous to name but I can still hold a conversation with all of the guys who used to come around without notice, because you all are considered part of my family.

You avoid me when you can, I presume that is because you are scared about what to say in case I dribble or say something that may embarrass you.

Even if you did have to speak to me I would imagine that you would be looking around to make sure that none of our friends saw you and your face would be blood red.

Back then I believed that we all cared about one another and for one another, how wrong was I?

There is one thing that you don’t see and that is that I AM STILL HERE I AM STILL ME.

I am told you do not know what to say, how about starting with HELLO.

REMEMBER ME, REMEMBER ME “

By Mick Carmody, Copyright 2016                                                                                

“Living well with dementia”, by Jeanne Lee

Just love me, by Jeanne Lee
Just love me, by Jeanne Lee

We continue to share members stories and other topics related to dementia for World Alzheimer’s Month 2016 #WAM2016 DAM2016, and it is wonderful to hear from some of our members who have lived for more than 20 years with dementia.

We thank Jeanne Lee, one of the original members of Dementia Advocacy and Support Network International (DASNI), whose leadership DAI has followed, for sharing her story with us today.

In spite of the changes in cognition and health, many have lived and continue to live much better with dementia than the public perception of how it is of life with dementia; they have thrived with and beside dementia, and chosen not only to die from it.

This is Jeanne’s story…

“Living well with dementia”

By Jeanne Lee

“This is a story of a mother of five plus their partners, grandmother of 13 and great grand mother of 4. A wonderful best friend and partner and many friends and family. That’s me and I count my blessings many times everyday even with the diagnosis of Alzheimer’s and with many symptoms of PPA.

I am writing this to wake up the world to our cause to be respected for who we are and what our diagnosis says on a piece of paper or on a computer. Too many years doctors’, scientists’,speakers’,and everyone who thinks they know everything about what WE live.

When will the big money for speaches be spent on thee experts who live 24-7 with it surrounding their every moment. When will every organization having to do with Dementia be required to have these experts on Boards which are deciding our lives. Deciding to put all money into the cure that is years away instead of taking care of us now. How many of us can afford to get to an International Conference which Is All About Us. For gods sake who belongs there.

I am one of the few still fighting after 21 years diagnosis. I survived attempted suicide, 3 years being put in mental institutions for depression, writing a very successful book; Just Love Me. My Life Turned Upsidedown by Alzheimer’s. I also was a member of 9 national and international Alzheimer’s groups on the Boards of 3 and traveled the world on my soapbox.

Wake up world all; we want is Respect.

I had a note from a sister in dementia “What Would a Day All About You Be Like”

To make this short I just completed a six week Vacation all about me. My Family made it all possible and I truly wish all these Buddha Moments for every person touched with or by dementia. A special mahalo to Vern my partner in care and best friend for wanting me to have this treatment and love.”

Copyright: Jeanne L Lee

“The day my dream sank” by Michael Ellenbogen

Screen Shot 2016-09-04 at 6.30.27 AMMichael Ellebogen is a member of DAI, and has been a long time global advocate for change. He has shared his story of living with dementia with us  here, including the frustrations of living with cognitive disabilities. Thank you Michael for allowing us into your inner world for this series of daily posts for World Alzheimer’s Month/Dementia Awareness Month 2016 #WAM2016 #DAM2016….. This is his story.

“My name is Michael Ellenbogen. I am a writer, husband, and father. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways.

When I finally received my diagnosis, of Alzheimer’s, it was a relief to have an answer that explained the symptoms I was experiencing. I had heard of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.

Alzheimer’s disease has impacted so many aspects of my life like my career as a high level manager, but I was surprised by how it has impacted my hobbies. Not that I had many. I used to love boating and tinkering with electronics but I can no longer do either of these things. Electronics are not forgiving, and if I make a mistake the projects can go poooofff when I touch the wrong component. This has happened.

I have tried to take up new hobbies such as golf, but learning new things is difficult. I could not keep track of the ball. It took me much longer to tee off then others, and I felt too much pressure when I was slowing down the people behind me. I would love to play golf but at my own speed and without all the pressure.

I became increasingly frustrated. Not because I have Alzheimer’s, but because of the disparity and stigma surrounding this disease.

Let me explain. Everywhere I turn, I hear or see something related to cancer and HIV. The government contributes 18.7% of the NIH research budget to cancer, 9.9% to HIV, and Alzheimer’s receives only 1.5%. This leaves me with one question. Why? There are so many more people living with Alzheimer’s than HIV, yet we receive so much less funding.”

And here is Michael’s story his frustrations with how dementia has impacted his ability to enjoy boating, one of the loves of his life…

The Day My Dream Sank

“I have been a very lucky person. I have had the opportunity to own 5 boats in my life time. The last boat I had was sold because my wife and I had no time to use it because of our jobs. That was about 17 years ago. I really did not have the time again due to our work schedules.

Then came my diagnosis of Alzheimer’s disease (AD) in 2009 at age 49, after struggling to get a diagnosis for 10 years. Because of that I was forced to retire. That thought never left my mind and I kept looking at a boat but I had the fear that I would decline in another year or two and would no longer be able to control a boat.

I once had great skills and could easily control a twin-engine boat and move it sideways into any position I wanted. That requires lot of knowledge and multitasking. I was fairly sure I would not be able to do that anymore because of my AD. Over the years I kept looking at a boat every chance I could and I just had this dream to buy another but I was so afraid of the added limitations that have been placed on me. Then I realized that the two years were now 4 to 6 years and while I did decline it was not as bad as I thought it would be. I guess I am also lucky there, if one could look at this dam disease.

So I decided to look for a used boat. While I found many, I was always afraid to buy them because of the possible repairs needed. That is another problem. I once was able to do most of the work on the engines and keep the boat well maintained. I am no longer capable of doing it for reasons I cannot even explain. I don’t even wash and maintain my car, which was always sparkling clean. Something in me had changed; something that would make me look lazy if you did not know I have AD. I just don’t do things anymore. So as you can see this would create many other issues, but I figured I was going to finally live out my dream. I used to say we were the poor boaters because we had to do all of the work, while many had their boats well maintained and they just came down to enjoy them. That would add a lot to the cost but I knew this was my last opportunity if I was going to do this.

I have been able to find ways to make up for my inabilities. I was even looking for a boat that had what is called a bow thruster. That would allow me to have more control to make up for my loss of skills. This looking went on for years, and I finally came to the conclusion that I would look at a new boat to insure all of the issues would be handled under warranty.

As I tested new boats I found that the high-end boats had technology installed that would make up for my lost skills, and I was so relieved that I now felt very comfortable and all of the issues were now being addressed. But what was great with this new boat is it had a joystick feature. This option allows a novice to look like a professional. It’s almost like playing a game. Whichever way you move the joystick the boat does it all automatically. That is no easy task when you know what is involved. I find the new boats totally amazing. I also now had the confidence that I also knew in my mind that my wife would be able to step in if needed.

I set my sights on 2016 Regal 35 Sport Coupe. After some negotiations I was having very high anxiety and fear of what I would consider the unknown. I was very surprised that my wife was even okay with making such a purchase. When it comes to deals I always got some of the best deals. With all of these issues and lack of commitment it is like being on a roller coaster. One minute I wanted it so bad and then came so many fears and I was unsure of the ones I did not know of. One of my problems is that I can no longer see all of the issues at once but can only think about one at a time.

I finally told the sales guy of the issues and did not go through with the deal. He said if he could resolve all the issues I could take a test ride to see if I would feel comfortable being behind the wheel. They finally came back with such a great offer that I could not refuse. As we had to put things in writing I realized many of the things that made me feel comfortable were not being put in writing. Things that were said were not the same. All this was creating even more anxiety for me. It does not take much to do that but all this started the roller coaster effect and feeling sick to my stomach at times, but I really wanted this boat, so I continued thinking we would overcome all this.

I also realized I was not being as sharp as I use to because I could not keep track of all of these issues and needed my wife to do it who just kept letting them getting away with each of these issues. I was also wondering what I did not know that I did not pick up on. I figured we could work this out by the final signing as I had made my request.

In the meant time we started purchasing many items for the boat as it is like buying a new home in some ways and you need a lot of things. I had forgotten all that. I had made a list of items needed and went into the store to buy them. I came out spending a lot of money and bought many things. Then I realized most of the items on the list were not even purchased. That just created more concerns of my inabilities to get things done right and my wife was not helping as much as I was counting on. I had forgotten how expensive all this was. It was not the money but trying to keep track of all of these things. I just figured I would get over it but seeing them all pile up on my floor was starting to become a bit overwhelming and added to the already existing anxiety.

The night before the sea trail I had trouble sleeping. I had so much anxiety and fear. I even felt like I was going to have a heart attack as I was getting pain in my chest. I finally told my wife and she said we were not going to get the boat. I was so relived and prepared to do that.

But then we saw the boat again at our sea trail and it was such a great looking boat that I had decided to move forward with the deal and take the risk. I kept telling myself it would get better once it was over and I pushed on.

When the captain came on board he started to explain how I needed to do certain thing in sequence otherwise I could do damage to the boat’s electronics. Here is a person who the day before had trouble using the remote for the TV. All of this makes me really question my abilities. Then there were the markers on the water I needed to follow. I was a bit confused and concerned about doing the same as the captain when I was on my own. It did not help that most of the water in the area was low of 3.6 feet at mid tide.

There were some issues with the boat but think they could have been resolved. But then again there were various markers that were being pointed out to me that I would need to remember later so I could navigate safely. In my mind I was wondering how I could possibly do that when I have so much difficulty remembering. Then as I looked around me on the open water I became panicky and scared as I just felt so overwhelmed that I was trying to hang on to a dream that I was no longer capable of doing. As much as I loved this boat and it was the best boat I had ever had for just one week. I had to finally come to the realization that my AD has made it impossible for me to do this safely.

I had such difficulty making decisions throughout all this time, and I believe my old self would have never even allowed me to spend so much money, but all of my executive functions seem to be a mess. I think the lesson to be learned here is that we must learn to simplify our lives, but that is easier said than done because I still want my boat. I realized deep down it has to be this way but it does not make it easier.

It’s times like this when I really hate this dam disease. It has taken away all of my hobbies. So I guess that last boat did not count since I only kind of owned it for a week. This is just so hard for me to accept.”

Michael’s book From The Corner Office to Alzheimer’s is available here.