Someone asked me to give them information that would help caregivers for an article. So, I wrote the

Michael Ellenbogen

I will give you a bunch of bullet points and if interested we can speak about the ones you would like to know about so you can write the article.

 

 

You must be come a detective if you want to become a good caregiver.

 

Need to learn to think outside the box

 

Expect the worse of thinks and if you are surprised you did not educate yourself enough.

 

This dises is like going down a curve road and you need to be prepared of what a head to stay on track and it will not be easy

 

You will be surprised that most time you can find away to still communicate if you are wiling to change and learn new ways.

 

Don’t delay to take over what your partner use to do. It will not only create stress for you but the person with dementia.

 

This dises is far worse than you can imagen. Just imagen that you are going in reverse from an adult to a child again but you still have the knowledge on how things should be done but no longer capable of doing it.

 

Don’t argue about things like are not true or they remembered incorrectly.  

 

If you are going to have an angry face or tone expect it 10 times worse from them.

 

Make the environment safe, quite and plenty of light.

 

Person’s temperature will change constantly so you will need ways to adjust for that.

 

If something does not work like showering there are many reason why it will not work. There is definitely a solution at you try to figure out why. Temperature, embarrassment, touching the person, lighting, stability, fear of water. Make it a fun time by adding music. An not what you like but what they like and at the right volume which can change from one day to the other.

 

I hate the word sundowning. You should try to satay focused all day at 110 present to just get buy through the day. You would be burnt out by end of day.

 

I also hate the word wandering. I have always liked to go for walks and explore. Why would I change later on?

 

If something triggers a negative reaction you need to understand the person history and role play with them to figure it out. For example a person who was in the hospital was near the elevator and every time the elevator bell went off he became combative. In his early days he was boxer but they did not know that. So he did what he always knew to do. Trust me there is a reason for why they do some cray tings if you can figure it out.   

dayn2nite2

Oh!  Blame the caregiver.  Great.

Michael Ellenbogen

This just proves my point. A smart person knows that they don’t know it all and would be grateful for this information.

jfkoc

I do not know who is writing the article but thank you for sharing your reply. 

 I, for one,  wish I had been aware of these things. Just knowing them would have made the day's better for me and my husband. 

Iris L.

Michael you are right.  Caregivers need a lot of education.  As someone once said, there is a huge learning curve.  Most new members join with the same questions and concerns.  I get the impression they are waiting for their LO to "admit" to having dementia and to ask for help.  They become frustrated and often angry.  That's why I focus on pointing out the anosognosia.  Dementia is not like other disease conditions.  I believe that once caregivers understand the reality of dementia, they can change their perspective and approach in a different way.  They can become pro-active instead of reactive.  They can learn what they need to learn and go forward with more confidence.  

Iris

jfkoc

Iris...agree...caregivers can use all the education they can get and the information from persons here with cognitive challenges is one of the very best resources. 

Sundowning....there is much written on its relationship to circadian rythm.

Wandering...perhaps has as much to do with boredom as it does exploring

Iris L.

Jfkoc, I think wandering has to do with more than boredom.  PWDs leave their home and no longer recognize the building or the street.  They cannot retrace their steps.  They get lost inside their own homes because they no longer recognize the doors or rooms.  Family members understand that PWDs may no longer recognize people, but they seem to have a hard time understanding that PWDs no longer recognize a lot of things.  

This actually happened to me while I was driving, but only once and it was at night.  I was driving down a familiar street but I did not recognize anything.  I kept driving until I came to the mall, which I recognized and then could get myself home.  PWDs who get lost may simply hope to keep driving until they come upon something they do recognize, but they often never do. 

Iris

Stuck in the middle

I am not writing an article, but these bullet points would certainly make a good start if I were.

Michael Ellenbogen

I believe you are right about that. As I was riding my bike a few weeks ago I tried to stay along the water for fear I would get lost. I know I may not recall how to go backwards if I went to fat off the path because of recall. It was hard enough to keep track which way I had to go along the water to go back from were I cam from. That is the reason I hated using my boat. I could no longer remember where I was and it the water is very hard to keep track of what was once so easy for me. I was afraid to leave the canal.

 

That is why I love GPS in my car. Without it I may have had to give up driving. 

I also do not plan to change my ways. If I get lost someone will find me but I will live my life. I have notified all polise in this area about my condition and cary a metal tag with all of the information needed to get me home safe. The key is just not to panic when it happens. 

Iris L.

Michael, you don't have anosognosia.  Most PWDs do, and when they get turned around, they don't know to ask for help, they just keep going and wind up in the woods or somewhere hopelessly lost.

Can you pay attention to landmarks?

Iris

Arrowhead

Very good information. While reading it, I had the following thoughts: 

Instead of telling his people to think outside the box, Walt Disney told them to think that there is no box.

A curved road and a rollercoaster.

My wife doesn’t have sundowning, she has sunuping. She’s worse in the morning. She can still change course during the rest of the day so I’m always prepared for it.

My wife tried to leave home several times a day every day for a year and a half. She wasn’t “wandering”. She knew exactly where she wanted to go and had a good idea on how to get there.

Stuck in the middle

Glad you can get out safely, Michael.  So can I.  Everyone cannot do that.

A friend of mine, with AD, mistook a neighbor's house for his.  The door was locked, so he forced it open, damaging the door.  He did not look like a disabled person.  He looked like a muscular construction worker (which he was).  Had a terrified occupant decided to shoot him, an ID tag would have been helpful in informing his widow.

Your list should contain one more bullet point:  When you know one person with dementia, you know one person with dementia.

Michael Ellenbogen

Iris I never know what I can remember. I remember the stupidest thing but things that are important I cannot seem to remember them. When we travel I could not even remember which bus I had to get back on or peole part of our group  and that was very scarey when you are in anther country. I also loss my sense of direction which use to be so great and never needed a map or chart. So the answer is probably I cannot remember the landmark as I can easy get it confused with some other one.

mommyandme (m&m)

Could there also be an interest in how caregivers can take care of their own well-being while caregiving? Or maybe it’s only specific in respects to providing care for the client/patient.

Michael Ellenbogen

If they follow some of those ideas it will make their lives easier. That is the point of the article.

Iris L.

Michael Ellenbogen wrote:

If they follow some of those ideas it will make their lives easier. That is the point of the article.

Michael, I'm glad you wrote these words about making the caregivers' lives easier.  I have something to say to you.  You say that you can't remember landmarks yet you refuse to stop biking and going wherever you want to go.  Fine for you, but what about your wife who I'm sure worries about you every time you leave home.  One of my "nots" from my thread on the I Have AD board is I will not be a burden to my family.  I would not like to have my family worry about me every time I left the house.  

Frankly Michael, what you describe sounds very anxiety-provoking to me.  I always stress that safety is a priority to new members.  Of course, most PWDs are more compromised than you and I.  But we have to be safe too.  What you do is between you and your wife.  But consider how you are going to advise the readers of your article how to enforce safety for their own PWD?

Iris

Michael Ellenbogen

You are right Iris about the added stress to her but if she was smart she would think ahead and insure I had a GPS or other tools that could help if it would bother her that much. Trust me my caregiver is one of the problems just like many others. I never said she was perfect. An for me I will continue to live life no matter how challenging it is and how much extra stress it brings me. I cannot become a hermit and let this disease take over my life. I will not burden my family say you know when I reach the later stages I have ticket out of the world so I am doing them all a big favor. Doing all of these things has allowed me to no progress as fast as I should have.  I am now convinced that all the steps I have been talking is drastically reducing my decline. What is said it will never be able to be proven because it would help so many others if it was.

I will die doing the things I love to do. And my wife knows I will die a happy person. 

At first all of thiss is stress but I slowly over come it after awhile. I am doing so much more after doing this move. So pushing myself works.  

Michael Ellenbogen

 I should add as I see the same things happen to all my dementia friends wo are big advocates. The will to live is very powerful.

Iris L.

Michael, you are truly a Dementia Pioneer.

I was told by a psychologist to push myself.  I am pushing myself.  I think that is keeping me going too.  

What are you going to advise the caregivers in your article? To get their LO to keep pushing?

Iris

Michael Ellenbogen

I am not doing the writing but they are send the draft to me soon as I selected about 6 topics for now and we need to speak about it so we can shape the article. I usually don’t do this anymore but this is guy I served with on a great committee who was a caregiver for his wife. He is one that actually gets it. We served to change the medical system in the US on how to bring changes to the ER for those with dementia. Great group of doctors and medical folks.

 

As far as make what I know a recommendation I am not sur it can work. If I was pushed into this by my caregiver I don’t think it would work. One needs to have the will to do this themselves as it is very hard to do and overcome. It may be able to be done with someone who has a great personality and can coach the person at their speed and lot of encouragement.

 

I remember about 10 years ago my Top friend in AA who was also a medical person told me not to do this as It was stressing me out and it truly was. I found myself breaking down. But over 6 months I became stronger and was able to be come one of the greatest advocates for this cause. I still find I need to do some of that today on a few things but its working.

 

There is so much more I can do today then I was able to do just a few years ago. I am so surprised and grateful to be able to find ways to work around these obstacles. 

jfkoc

Michael...could it be that with fewer things on your plate you are more able to focus????

Michael Ellenbogen

I still have alot of balls in the air just more complicated ones even though I slowed down some. That could be helping. I am also enjoying more of life now and enjoy eating and sleeping. Not sure why but so much is changing

Iris L.

Good for you, Michael.  I know I am doing less now than two years ago.  I also know that Covid restrictions have a lot to do with it because I have been isolated in my home like a hermit. Covid is still a big presence in my zip code. But I am going to follow your lead and keep pushing.  I do know that activity is beneficial in maintaining independence.  It's good to focus on what we can still do, not only on what we can no longer do.

If there is room in the article to promote something like a Memory Club, I think that could be useful.  PWDs and caregivers need real life support.

Iris

jfkoc

I wish that the article could be written from the point of view of the person with the illness. Same bullets can be used.

Michael Ellenbogen

I believe that is what it will be. From my view in a caregivers forum. I have the final say on what is published. They are just helping me to put it all together. I am unsure if I am understanding you correctly.

 

There is so much more I would love to say these days but that is just getting to hard for me.  I am always open to interviews with people who can take my words and ask the right questions to create a meaningful article.

 

Sadly I have herd from so many who live with dementia about the issue of their caregivers and I also see that with my own. I never thought I would see those issues because she was involved with many things i was and was also a medical person. So to me that just proves that the issue is many of the caregivers who are stubborn and just refuse to change to make the own lives better. I find it very sad. I don’t know what its called but if things continue this way I may need to look for some one who has my back. I forgot what those folks are called. 

dayn2nite2

You speak about your wife so disdainfully.  It’s really sad.  You have no insight as to our lives and the devastation your disease causes.

Michael Ellenbogen

I have more insight than you could ever image. One must absorb change in life and if they don’t they will sink. You act like you have it harder than us with dementia. We all struggle in our own ways. What I find said is that you think you are more important then the person who actually lives with the disease. Don’t Jude me unless you want to have a real conversation about it so you could trull understand the issues.

jfkoc

"many of the caregivers who are stubborn and just refuse to change to make the own lives better. "

Yes but I think that the majority simply have no idea that help is available.  You get a diagnosis and sent upon your way without even a sheet of paper with resources. An then there are situations where the caregiver really has too much on their plate so the caregiver role is only one of many hats worn. 

 Then one must realize that many simply are not "caregivers" .... The question was asked recently "would your spouse take care of you if  roles were reversed?" My husband would have done anything for me but would never know how to do it. Personalities come into play. 

jfkoc

An approach might be "what I need my caregiver to know and to understand.

Iris L.

Michael, I think it is very important to point out to the members here and to the readers of your article that you and I do not have Alzheimer's Disease, and that we probably function on a different level of independence than the people they are caregiving for.  Anosognosia is real.  Safety concerns are real.  I don't have AD but I follow safety precautions, such as limited use of the stove.  

Iris 

Michael Ellenbogen

Iris are you saying the caregiver has Anosognosia