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26AEC Copenhagen - a travel diary by Idalina Aguiar, EWGPWD member from Portugal, and her daughter Nélida

Personal experiences of living with dementia

Our experience in Copenhagen was undeniable, so we decided to prepare a travel diary with our experience in order to share these days and fight the stigma of dementias and prove that it is possible to live with dementias.

Day 1 – Funchal (Madeira Island)

Taking advantage of the post of a friend, in which she does some reflection on social networks and the balance between cost / benefit (which in most cases corresponds to addiction), I take the opportunity to share the same opinion.

I also recognize the benefits of social networking, from my mother's initial breakthroughs at the onset of dementia, to being able to find her after sharing on facebook, sharing my mother's dementia story via facebook and my "let's go Perpetuate memories "have managed to get the message and help known and also unknown to dealing with Alzheimer's dementia.

Like Mento (my friend who is also sadly familiar with a type of dementia), Facebook, for me, works essentially as a way of escape, of relaxation and good disposition, at other times as an alert for important social issues and that is also It is good that we reflect and exchange opinions with those who are willing, on the other side.

So, and sharing the same opinion, that we should use new technologies in a moderate way and always with the goal of delivering positive messages, I announce with great satisfaction that in my role as a caregiver I will accompany my mother at an important stage of her life.

We will be able to share experiences, interact with other people with dementia, know how to live with dementia in other countries, and above all, learn about the latest news on treatments and possible cures for dementias.

To those who accompany my reactions, you know that I take my posts about Alzheimer's dementia very seriously (here all publications are real, honest and above all with great hope).

We go with great desire, curiosity, anxiety and above all with great joy in sharing our experience.

The stance we have with the disease (avoiding drug overdose and minimizing antidepressant treatment, replaced by all kinds of complementary therapies, begins to reveal its benefits.) The adventure begins today and we promise to make daily updates .

Guessing a long and intense day, we begin the final, useful, necessary and indispensable preparations that a trip entails. It is very important a check list when traveling with a person with Alzheimer's dementia.

However, because this will be a medium-course trip (which in practice can even be considered long-haul, with a time of more than 6 hours in an airplane), it entails a more thorough and timely preparation.

Given my mother's medical history, her history and because in addition to dementia, my mother is also anticoagulated patient, she regularly takes oral anticoagulant (VARFINE), so the danger of producing clots with the possibility of embolism or thrombosis if not Enough anticoagulation, it is large, regular control of anticoagulation is periodic and had to be performed this week (INR measurement).

However, it was verified that this value was very high, that is, with high risk of hemorrhagic, something that is not even happening. We then started a mind-blowing race between the family doctor, the cardiologist and the nursing team so that the medication was readjusted and the values returned to normal parameters.

Today we had the final evaluation and "miraculously" the values returned to normalcy. (i.e.

Therefore, the care to be taken is normal for any traveler, with a little more vigilance, not forgetting the compression socks (which she insists on not putting), much hydration and walking along the aisle of the plane.

After this (small) setback, we finally arrived at preparations for a smooth journey.

The check list (already prepared in previous adventures) has been successively verified and now all we have to do is wait until everything goes according to plan. We know in advance the importance of notifying the airline and crew of my mother's record and this time will be no different.

To all those who accompany and support us, here is our immeasurable affection and gratitude.

Day 2 – (Funchal – Lisboa)

We woke up well at dawn, and the first trip (of scale) was done smoothly.

We drove in time to the airport, and the flight was on schedule.

On this trip, and because the logistics of the scale obliged us, we traveled with 2 baggage each, so the fact that we were accompanied on this route was gratifying.

After a few hours of rest we will wake up early to catch early flight.

My other heroine (my mother's primary caregiver) aunt Clarita, will (finally) be able to enjoy a well-deserved vacation, and from now on, my only priority will be to follow my mother for 24 hours.

We will catch flights to different destinations but with the same feeling that we are all fighting for a battle that unites us, is unquestionably.

Today, the day was mainly rest, and in which the bags were prepared and revised for the temperature drop that we will face.

It is done new final check list, in which nothing can be forgotten. My mother finds herself calm and serene (as it is her apanage) and in her, increasingly rare moments of lucidity, we can see the enthusiasm of those who have always enjoyed traveling.

Sometimes she does not remember what she's going to do, but by being stimulated she can describe exactly where we're going and what we're going to do.

We will continue with daily updates and with renewed hopes that we refuse to limit our illness.

We will continue to perpetuate convicted memories that it is possible to (live) with dementia.

Day 3 – (Lisbon-Copenhagen)

The day started at dawn, and we headed to the airport early.

I take this opportunity to thank my friends who gladly welcomed me for a couple of hours, dancing, doing what I like and relaxes me, and preparing me for a demanding and intense week.

The journey is as normal as possible, and despite the hitch of arrival in Copenhagen, where someone was supposed to wait for us, something failed, and our transfer transported someone in our place.

To prove that the law of murphy exists, my mobile phones can not detect any network, although it is within the European community and with active roaming (problem that still persists but we have wifi connections).

I was well advised to seek help and immediately the situation was closed and we were promptly entitled to private limousine and entitled to VIP treatment. Coincidence (or not) we were transported to the hotel by the owner and president of the transport company "EXECUTRIP" and "GREEN e LIMO" based in Copenhagen, but extended by Brazil and NY, mr. Christoffer Holmsteen who made us a tour of the city before taking us to the hotel and with his fluent speech and contagious friendliness revealed great interest in visiting our island since he is also a Writer.

The trip was calm and serene and only my mother's repetitive question (where is Aunt Clarita?) Reveals that the absence of her primary caregiver is notorious. Calmly (much needed to deal with dementia), I told her many times that her sister, had gone on vacation because she deserved it, so we took flights with different destinations this morning.

After checking in at the hotel, although the intensity of the day required some rest, my heroine did not, and preferred to spend the afternoon playing cards (her favorite hobby of stimulation).

At the end of the day, and for us to move a little, we chose to leave the hotel and it was not long before we returned, because despite the sun, the temperature was around 5 degrees.

At 7:00 PM we went to the lobby where all the elements of our work group were waiting for us. Nothing failed, and the detail of all being "tagged" made it easy to memorize names and presentations.

In this working group (there are many others), we are about 20 people, all with stories of dementia. We were very well received and included in the group, because we are newcomers, like Amele (from Bosnia). All others are already widely known and recognized names of the international Alzheimer's community.

The remaining members of the group are from various countries, England, Scotland, Wales, Spain, Luxembourg, Finland, Norway, Bosnia, Ireland, Germany, etc.

Most are already known among themselves, and are names strongly linked to the integration of people with dementia.

It should be noted that most of this group are people with dementia, who travel with their caregivers and are very active.

Thanks to Gladys, Anna, Helen, Alv, Karin, Amele, Petter, Hillary, Chris, Helga, Jansen, Nikki, and others that I can not remember the name for sharing their fantastic stories of dementia and how they have struggled to reduce stigmas created and above all to demonstrate that It is possible to live with dementias.

Now, the night will be rest, tomorrow work begins early and our thirst for information is enormous.

Day 4 – (Copenhagen)

And today was a long but very productive day.

We started the day with the nomination of members for the triennium (2016-2018) of the European Working Group of People with Dementia (EWGPWD).

It is already official and my mother is now a member of this group of jobs that makes dementia a priority.

There are 11 people with dementia of different nationalities who will contribute their experience to reduce the stigma of dementia. They will be led by President Helen Brennan (Ireland) and Vice Presidents Alv Orheim (Norway) and Chris Roberts (UK). Nina Balackova (Czech Republic), Karin Gustafsson (Sweden), Amela Hajric (Bosnia and Herzegovina), Caril Hargreaved (Scotland), Ib Holger Hegner (Denmark), Alv Orheim Markku Pakkisenniemi (Finland) and Helga Rohra Complete this group of Alzheimer's Europe.

After the nomination for the triennium and a welcome ceremony for the new members, the work was begun, which were concluded at the end of the afternoon, followed by a photo session with the entire panel of members and caregivers.

Despite the linguistic barrier, my mother was even very participative and we had the opportunity to reveal how dementia is treated in our country, what kind of support we have and what interaction exists for possible inclusion in scientific studies.

I come to the conclusion that, much remains to be done in our country.

But this is what we are here for, to see what types of approaches exist and, above all, to fight the stigma created against dementia, to alert the political class and society to this cause, and especially to warn of the importance of being able to live with dementia.

The main activities of this working group were revealed, which is extensive and very active.

We were also given all the necessary documentation to access the conference (to be started tomorrow).

Today, we are going to have a soulful dinner full of hope because we can contribute to the demystification of dementia.

Tomorrow the work continues and the struggle is incessant.

Day 5 – (Copenhagen)

Yesterday the day was intense, in the group of works of the EWGPWD, so, today we had the right to free morning, so we chose to know a little about this city.

Given that it celebrates Halloween, we were fortunate enough to find the Tivoli open as it opens on Christmas and special dates for a world of magic, being famous for its fairytale ambiance, the beautiful gardens, entertainments and fantastic amusement park.

We continue to walk (always at slow pace, but ensuring mobility) through the city and its canals.

2 hours later (on a journey that can be done in 20 minutes) we arrive at the old Nyhavn Port (which means NEW PORT ), from where we leave for a boat trip, this tour being the best way to absorb the wonderful views and topography Varied from the city of Copenhagen.

This old Port (despite the nonsense of the name New Port) has many chic and colorful houses, and the cafes and bars come alive with visitors.

We got to see the incredible Opera House (built in just 4 years, with a huge auditorium with about 1700 seats) and with fantastic sculptures at its entrance, which change color according to the weather.

The "black diamond" is another obligatory stop, being a vast and attractive structure, which houses all the books published in Denmark and therefore the largest library in the Nordic countries.

Finally, we visited the little mermaid, a small landmark, the creation of Edvard Eriksen, whose wife, Eline, was the model.

We also saw floating houses along the canals that have an eclectic mix of styles, ranging from conventional boat structure to flat type and to modern and exotic houses built on floating platforms with outdoor spaces.

We return to our hotel, right next to the lakes and the Tycho Brahe Planetarium, with a permanent exhibition that includes natural sciences, travels through the stars and space, where the great attraction is the IMAX cinema, where we are taken by the huge images of high quality In the 1000 m2 of the dome screen.

Once again we prove that it is possible (with) to live with dementia and with organization it is possible to be active.

The afternoon was again marked with the return to work. And we also had the opening session of the conference in the presence of His Highness the Princess Benedita of Denmark and the Minister of Health of Denmark.

At the end of the day, we had time to fellowship with the others at the conference.

Today, it touched us the story of Isa(bel). Isabel is also Portuguese, like us, and they where able to be in the conference. She was diagnosed with Alzheimer's dementia about 2 years ago. Initially it would be a dementia fronto temporal but with the result of PET (scan) confirmed if the dementia of Alzheimer. Isa is 63 years old and the first signs appeared during the first month of age of her first and only granddaughter. With her granddaughter in the care of her grandmother, the first warning signs were constant, with constant and repetitive phone calls to her husband about hours, quantities of milk to be given to the baby, etc.

The search for a doctor was immediately and unfortunately, Isa, like his granddaughter, became the priority of care.

Today, she is still going through a phase of denial of the disease, and speaks nervously about herself and under the ever watchful eye of her Husband (main caregiver).

He says proudly that he continues to drive and is very active, but unfortunately we know he will not do it for much longer, especially since the disorientation is common. I see in the eyes of this caretaker (her husband) the shocking sadness of what is happening, but I also see immeasurable love and dedication.

They are (in my view, fortunately) included in a test program for a new drug developed by "Roche", which hopefully will be positive.

It was a memorable moment in the conversation of my mother and Isa, and suddenly my mother decides to speak in the first person and says: "We are only aware of what is happening to us to some extent, after the disorientation we are not able to discern What will be right or wrong, and then we have to rely entirely on those who like us.I trust my daughters entirely and I feel comfortable because I know they will know how to take care of me".

I hope that in some way, we can help this couple, to face all the necessary support.

Day 6 - Copenhagen

Today was the day of the conference, with very varied and comprehensive themes, making it difficult to participate in the various panels simultaneously. However, we actively participated in the panels where the EWGPWD (European Working Group of People With Dementia) took part.

This group of works (which we will be part of in the near future) was created in 2012 by AE (Alzheimer Europe). It is a group composed of 11 people with different types of dementia. It is a group that works to ensure that EC activities, projects and meetings reflect the priorities and opinions of people with dementia.

The aim of this group is to encourage the creation of national dementia working groups in each country of Europe, to increase public awareness by showing what it is to live with dementia and to reduce the fear and stigma associated with dementia.

In this working group, we actively contribute to Alzheimer's Europe activities, including participating in dementia research projects, attending annual events and conferences, and attending European and international conferences addressing challenges to living well with dementia.

The position paper of ALzheimer Europe will address the challenges and potential risks and benefits associated with the process of meaningfully engaging people with dementia in their work, both in in-house research and in collaborations with external researchers and in the development of policies related to Dementia in Europe.

At the end of the first day of the EA conference, we had the gala dinner, sponsored by the Danish royal house.

Despite the nearly 700 participants at the conference, this dinner was restricted to EWGPWD members, neurologists, speakers, and lecturers.

It was a memorable time with music and lots of dancing.

For those who do not know, music therapy is a fundamental tool in the treatment of various diseases (including dementias).

My mother, if she showed any fatigue, for taking a full day at the conference, she quickly forgot. It was nice to see her dancing freely, she was happy and it was notorious .

Between our presence at the EWGPWD stand and the various parallel sessions we wanted to attend we were approached twice. The first time we were approached by Simone Wiling (http://www.simonewillig.de), a recognized specialist inmusic therapy. Simone recognized us from last night and one of my speeches on the benefits of music therapy. She wanted to know us and make us available to follow our experience.

It is always good, to seek us for such enriching reasons. .

In the second approach, we were barred by a Finnish couple (Petri and Anna) who recognized us by the Madeiran accent.

They are both lovers of our island, and have been there for dozens of times, but it is impressive that they have recognized our accent, from the island (our identification only indicates that we are from Portugal).

Unfortunately Petri can no longer visit our island as much as he wished. He has been diagnosed with Alzheimer's dementia for 1.5 years and although he is of working age (56 years old) he is unemployed.

Dementia is the term used to describe the symptoms of a large group of diseases that cause a progressive decline in the mental functioning of the person. It is a comprehensive term that describes memory loss, intellectual ability, reasoning, social skills, and changes in normal emotional reactions. The term dementia is often used to describe any form of dementia diagnosed in people under 65 years of age, so Petri was diagnosed with dementia early.

It was a very good moment of sharing and above all finding passionate about our island.

Like my mother, Petri wears an ID bracelet. However the differences are many. The "I'm here" adult wristband my mom uses has big holes. The bracelet used by Petri is made of steel, much more resistant and can hardly leave the arm without someone reliable. It also has a small box, where important information and the diagnosis of Petri's disease are stored. My mother's bracelet is just a ribbon (which she has tried several times to cut) with a badge, with an ID number and asking to call 112. Unfortunately, the last time we had to use it, the police that Addressed, in addition to allegedly ignoring the program, treated my mother as if she were a person without any dementia. She was the first person to wear the bracelet and about two weeks ago, I was surprised by the official launch of the "I'm here for adults" program without having heard the opinions of the users of the bracelets in the first year of the test, because I am convinced that our Opinions would make a difference.

Tomorrow we will bring more real stories.

Day 7 - Copenhagen

On the last day of the conference, the site of the next Alzheimer Europe conference was announced. Berlin will host the conference in 2017.

At the closing ceremony the "Copenhagen Declaration" was also released with the main conclusions of this conference:

1 - more focus on research,

2 - more awareness and knowledge about dementia in society,

3 - that all countries become friends of dementia,

4 - systematic post-diagnostic support and follow-

5 - care and care centered on the person and the family,

6 - the opportunity to participate in decent and participative activities,

7- support to stay connected to the digital society.

Today I will speak of Hillary Doxford, who is leaving the WGPWD, where she entered in 2014, being vice president since then, but that will continue to be active member of the Alzheimer Europe.

She was diagnosed with early onset of Alzheimer's disease in December 2012, aged 53.

Between the earliest signs and his diagnosis they passed 3 years, and in the meantime Hillarry married Peter Pannicia, an English photographer of Italian descent, with an incredible good humor and who has been his support and caregiver ever since.

Hillary has been nominated for the "World Dementia Council" since January 2015 and is the first member living with dementia, which is part of this World Council.

She has a high business position and is responsible for about 300 people. Despite his diagnosis, he continues to work and wants to do so until he is able to demonstrate that people with dementia can be valuable contributors to their organizations.

Day 8 – Copenhagen-Lisbon

On the last day in Copenhagen, we took advantage of the sun, to big farewell to the city.

One last visit through the port of Nyhavn and then through the artificial lakes.

My mother is happy, and I am glad to report that everything went well. With great organization, methodology and good will it is possible (with) to live with dementia.

As already announced in previous posts, in addition to the conference, we had the opportunity to meet with the EWGPWD working group, and it was also possible to fraternize, walk around and especially provide moments of integration of the new members.

For now we say goodbye to these people with a very high value, and we set the date for the next meeting of this group of works to be held in Brussels.

And today I close this cycle of daily chronicles on our experience in EWGPWD.

It is time to return to normality and to work. My mother however will continue her fight against stigma and I will continue to support and do everything to prove that it is possible to live with dementia.

I left for today, talk about a theme that is not always visible. The role of a "caregiver" is always ungrateful, but fundamental in the fight against any illness or limitation.

Although (seem) everything is much easier, when describing my experience as a caregiver, the truth is that everything requires much preparation and some abdication.

I also want to express my sincere thanks to all those who are behind me, supporting, and doing everything so that my posture and acceptance of my mother's dementia is a success.

This trip was a fantastic and unbreakable experience, and although everything was prepared in advance, the truth is that this also forces some kindness and patience on the part of those who support me directly and indirectly.

Therefore, I would firstly like to thank my sister and nephews for the unconditional support, my cousin Isa Cabral and family, especially my cousin Rodrigo Timóteo, for the support, company and lodging given to my aunt Clarita Cabral, in her well-deserved Vacation in Madrid while we were by Danish lands.

This support will continue until the end of the month, during which time my mother will continue in Lisbon. That is why I thank the entire Cabral / Timóteo family for the logistical support of my heroines.

I would also like to thank the entire Cilinha family (Cecília Martins) for their patience and shelter on the remaining days of my "girls" on the Mainland.

To Maria Pia Jardim, for the friendship, affection and shelter provided in my moments of "exhaust".

To all the others who support me directly and indirectly in my life saga, and especially the "FAMILY DANCING" (and there are so many ) that gives me truly unforgettable moments.

To all a big hug until the next adventure.

Nélida and Idalina

 

 
 

Last Updated: Friday 10 March 2017

 

 
 

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