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The Day My Dream Sank

Boating and Dementia

By Michael Ellenbogen, Living with Dementia

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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. The thought of owning a boat again never left my mind and I kept looking at boats 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 boats 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 in that way.

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 has 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.

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.

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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 was not being as sharp as I use to be

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 meantime, 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.

Sequencing is important to follow or I could damage the boat

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.

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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.

Here is a Dementia Chats Session when we talked about decision making and Michael shared with the group more details about deciding to purchase a boat or not.

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Dementia Complicated By Abuse

On Alzheimer’s Speaks Radio This Tuesday, August 30th, 2016

2pm EST, 1pm CST, 12pm MST, 11am PST and 4pm London Time

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Harry Urban lives in Pennsylvania and was diagnosed with dementia of the Alzheimer’s type, over 12 years ago. He founded a dementia support group on Facebook called Forget Me Not and started the United Against Dementia initiative.  he also writes a blog at MyThoughtsOnDementia.com.  Today we will discuss abuse and dementia.  This is a very complicated and dangerous situation when it occurs, no matter what type of abuse it is.

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“Ask the Expert”

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Dr. Sonia Mosch, PhD., Clinical Neuropsychologist for the MN Wild (NHL Concussion Program), will be at the HealthStar booth for “Ask the Expert”

Come Out To The State Fair – August 29, 2016

Dr. Mosch performs neuropsychological assessments for individuals concerned about the onset of Alzheimer’s and other dementias. If you have questions concerning the brain, now is your opportunity to “Ask the Expert”. Dr. Mosch will be available to discuss:

  • The purpose for assessments, general methods, and uses in diagnoses of dementia versus normal aging;
  • What to expect if you are referred for a neuropsychological assessment due to dementia concerns/symptoms;
  • Recommendations that may arise from a neuropsychological assessment; and,
  • Other questions fairgoers may have regarding Alzheimer’s and dementia.

“ASK THE EXPERT” to be held August 29

from 10:00 AM to 11:00 AM in the

East Crossroads Auditorium/ Health Fair 11 Bldg.

(Corner of Dan Patch & Cooper).

Dr. Sonia Coelho Mosch, PhD. ABPP-Cn, LP
Board Certified in Clinical Neuropsychology

Staff Neuropsychologist for the MN Wild (NHL Concussion Program)

Also affiliated with Noran Neurological Clinic

Want to hear more about Dr. Sonia Mosch?

Click below to listen to an interview with her.

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Dementia Chats Recording from Aug. 23rd, 2016

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Voices of Those Diagnosed with Dementia

Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia. All sessions are held on the 2nd and 4th Tuesday of the month at 11am EST, 10am CST, 9am MST, 8am PST and 4pm London time.

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Alzheimer’s Speaks Radio Talks –

The Science Behind Alzheimer’s Disease

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Thursday, August 25th, 2016

2pm EST, 1pm CST, 12pm MST, 11am PST and 7pm London Time

This Thursday, we will have Dr. Gary Tong with us who is a physician, clinical researcher and leading expert in the science behind Alzheimer’s disease. Dr. Tong serves as Therapeutic Area Head for Dementia for Lundbeck US, an affiliate of Lundbeck, among the world’s only global pharmaceutical companies focused exclusively on brain disorders.

Get involved in a clinical trial:

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NIH

     Brain Health Registry

 

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Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia.

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Voices of Those Diagnosed with Dementia

Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia.

Enter The 4th Tuesday Of The Month – Click Below

Join from PC, Mac, Linux, iOS or Android:   https://zoom.us/j/725969648

Or Dial: +1 646 558 8656 (US Toll) or +1 408 638 0968 (US Toll)

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Alzheimer’s Speaks Radio Live With

Gus Noble with the Caledonian House

Tuesday, August 23rd, 2016

Live at 2pm EST, 1pm CST, 12pm MST, 11am PST and 4pm London Time

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New Award-Winning Residence for Those with Alzheimer ’s Disease
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State-of-the-art assisted living residence on Scottish Home campus will offer compassionate, effective memory care following ribbon-cutting on July 13.
 
The Caledonian House, a new assisted living home specially designed for those with Alzheimer’s disease, will offer the best in memory care.  They had their official ribbon-cutting ceremony on July 13 at 11:00 a.m. on the Scottish Home campus, 2800 Des Plaines Avenue, North Riverside. The Illinois Saint Andrew Society, the oldest charity in Illinois, will continue its culture of caring with the Caledonian House. The state-of-the-art residence accommodates 20 residents in a personalized and home-like, yet very high tech design. Even prior to its opening, the facility was honored with the British Consul General’s prestigious 2016 Award for Innovation.
 
“You may be surprised to learn that an organization founded in the 19th Century received an innovation award in the 21st Century,” said Gus Noble, President of the Illinois Saint Andrew Society. “How did we do it? We used our 100 years’ experience of providing quality, person-centered care to build the Caledonian House, a bold innovation where infrastructure and operations are designed to improve the quality of life for those with Alzheimer’s disease and other kinds of dementia.”
 
As well as being architecturally innovative, the Caledonian House is operationally innovative. While standard, institutional models of care employ three different workers for personal care-giving, food service and housekeeping, caregivers in the Caledonian House are cross-trained to provide all 3 services. This holistic approach features consistent resident-caregiver interaction that increases meaningful interaction between resident and caregiver and, in turn, this increases the bonds of familiarity and trust that encourage residents to remain active, engaged and fulfilled.
 
“We have also formed a partnership with Concordia University Chicago’s Kott Center for Gerontology to document the Caledonian House’s architectural, operational and philosophical innovations in order to develop a new model of memory care – one that can be replicated throughout the caregiving community,” Noble added.
 
Taking cues from Scottish and Midwestern architectural design, the new two-story building will look, feel and function as a home rather than an institution. There are no long, disorienting corridors. Each of the Caledonian House’s two floors is home to ten residents, all with private bedrooms and full bathrooms, all opening onto a great room where activities take place by the fire side. At the heart of the home is an open kitchen that fills the air with the wonderful aromas of cooking and baking. The Caledonian House is focused on the future and leading in a vital new model of care.
 
The Caledonian House is located on the Scottish Home campus. This is a unique senior living community nestled in five park-like acres just a few miles west of downtown Chicago. It is part of the first and oldest charity in Illinois, which was established in 1845. The Scottish Home has always emphasized warm community, close bonds between residents and staff, and strong links to family and friends. Both assisted living and healthcare options are available in a warm, loving environment.
 
Our philosophy of one-on-one care is inspired by the comfort of home and the warmth of family.  Research shows that just such an environment fosters the best outcomes for people in memory care.
 
The Alzheimer’s Association projects that, by 2030, 16 million Americans will live with the disease – a four-fold increase that could cost a trillion dollars each year. The Caledonian House is a practical response to this challenge, providing a haven of expert care deeply informed by a century of experience.
 

For more information on the Caledonian House and the Scottish Home, visit www.thescottishhome.org or rebeccadrennan@thescottishhome.org. For information on the Illinois Saint Andrew Society, visit www.chicagoscots.org or call 708-447-5092.

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Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia.

 Contact Lori For Your Next Conference, Training

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HealthStar Home Health Holds Free Memory Screenings at the MN State Fair

Last year HealthStar performed more than 3,200 memory screenings at the fair. If you are concerned about your memory, you are not alone. Face-to-face memory screenings average three minutes and consist of questions and tasks to assess memory. Individuals can take advantage of free, confidential memory screenings provided by HealthStar Home Health, as part of raising community awareness and providing public education on Alzheimer’s and dementia. HealthStar & the Alzheimer’s Foundation of America encourages screenings for adults with memory concerns, a family history of Alzheimer’s disease or those who want to check their memory now and have the results for future comparison. Warning signs of dementia include forgetting people’s names/events, asking repetitive questions and confusion over daily routines.

FREE Screenings to be held August 25 – September 5

from 9:00 AM to 7:00 PM in the

East Crossroads Auditorium/ Health Fair 11 Bldg.

(Corner of Dan Patch & Cooper)

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