How one family's dementia journey became the inspiration for MindMate.
People often ask about what inspired us to start MindMate. We usually tell them the short story of how Roger’s grandfather Francisco had Alzheimer’s and how caring for him showed the family that tools like MindMate are missing and would improve their quality of life and quality of caring. People normally get it, but to be honest, it’s only a small part of why we really want this to work out. The slightly longer story is about a Mexican mining engineer that travelled around his whole life and one day got lost on his way from L.A. to El Paso. It was a direct bus and he would usually spend his bus ride chatting to people or sleeping. This time, he decided to get out in Tucson, Arizona because he had lost orientation. He had forgotten where he was.
Francisco was born on the 29th of January 1924. He worked as a mining engineer for ASARCO in Parral Chihuahua, Mexico. This is also where he met his wife Carmen who he had 9 children with. Spending time with his six sons and 3 daughters was the greatest for Francisco and seeing the family grow made him very happy. He unfortunately lost 2 of his sons because of a car accident. Still, for Francisco and Carmen it was all about having a full house of happy people, with music, food and lively conversations. Francisco himself usually stayed very calm although he loved to tell everyone stories from the mines. “Last week in the mines, there was a really strange man who came by to ask for a job. He was very small and wore a funny hat…” Francisco & Carmen moved around a lot. They always tried to stay as close to their family as possible but they couldn’t stay in one place for too long. Rogelio remembered one time he helped them pack their things when they were moving from Torreon to L.A. when he was 16 years old. The boxes were heavy and the whole family was slightly annoyed by them moving again. Still, everyone helped. One of the boxes fell on the ground and Rogelio couldn’t help it but say: “Te lo juro por diós.” (“I swear to god!”) Francisco looked at him with his angriest look and Rogelio knew that he probably would have to join them for church this Sunday to make up for it. His grandpa was very religious after all.
Sometimes, when we look back at our lives, we linger on one specific moment or period when we wish we had done things differently. Having to care for someone with dementia can be a stressful situation and we maybe sometimes make decisions we would like to change. The nagging question “What if…? ” won’t leave us alone. We also asked Tommy if there was something that he would do differently today. Watch the video and find out what he said:
The Music section in MindMate is one of the most popular areas of our app. Two of our previous blog posts (1 & 2) have been about this topic and we are happy that Tommy spoke to us about it in the video blog series. Watch the video to see why he thinks that music has an incredible part to play in dementia.
“When my mum was struggling a little bit with speech and conversations, I would sing to my mum. “
“The little things are the big things, really.“
“You could be anywhere and a song can come on on and it reminds you of the summer, a holiday you had, the good times…”
“It reminds us, it celebrates us and it brings up stories.”
We don’t have much to add to this, as Tommy absolutely spoke from our hearts as well. Music is truly powerful! What are your experiences with music and what is your favorite song? We also would love to get feedback for MindMate’s music feature! Let us know what you think in the comment section.
When beginning to research this, I was surprised how many movies about this subject there are. Still Alice has been all over the media, and it is a brilliant film, but we should not forget that there are many more. I think it’s great that there are movies like this out there as they raise awareness and give people easy access to the topic. This is definitely not a top list, but five suggestions if you have been wondering what to watch tonight. (And are in the mood for a rather thoughtful and sad movie)
The Savages (2007)
The siblings Jon and Wendy (played by Philip Seymour Hoffman and Laura Linney) do not get along. They are nevertheless forced to leave that behind when their father is diagnosed with dementia. He has never cared for them but they are the only ones left to care for him.
Welcome to the second Video Blog with Tommy. After your great reactions and feedback, we decided to post these weekly now! This time, we asked Tommy what he would advise someone to do after being diagnosed with dementia.
Have a look at what he said:
"I think that can be quite personal to most people."
"You have to keep celebrating the incredible person that you are, the families that we have. Keep telling and sharing those stories."
"Changing it from "What's the matter with..." to "What matters to you?", is the key to this.
We spoke to a lot of counselors and have done a countless amount of reading, but none of the pieces of advice out there have really been so personal. We definitely believe that this approach is essential in this difficult and emotional time. Getting into this mindset and knowing what the essential things are should be the first thing to do, before taking any other steps.
It is nevertheless great that there are many good resources out there that can give you advice and information about dementia and the resulting "new normal". Also tips about treatment, medication and support are crucial. Some of our favorite resources are:
I think we all agree that music has great power. In the last blog post about dementia and music we spoke about why music can help people with dementia and what parts of the brain are affected. This post will look at what music actually does with the brain and what fascinating effect it can have, not matter if you’re just listening to it or actually making music yourself.
Lewy Body Dementia is a little know disease that second only to Alzheimer's for frequency in the dementia world. But, as more is being learned, the connection between Lewy Bodies and all other dementia's and Parkinson's is being drawn.
That being said, it took the death of Robin Williams to bring the mention of Lewy Body Dementia to the forefront. Not even the death of the perennial Top 40 Disc Jockey, Cassey Kasum brought Lewy Body Dementia any notoriety.
All of us with Lewy Body Dementia (LBD) suffer from depression, anxiety, fear, and anger, caused b the unknown of our disease. Some of us, like Robin Williams, cannot deal with those issues and choose to commit suicide. Other, for reasons I will not speculate on, can stand our ground and make the best of a bad situation. Many times, various doctors that I visit ask me if I am suicidal or homicidal. I always answer no to the first and no, I like women, to the second! You have to see the humor in that!
The question if music really can help people with dementia has been very present in the past days. This is why I decided to dedicate two blog posts solely to music.
I personally do believe in the great power of music. Only listening to it can calm me, make me more focussed or motivate me for a work-out. Also, singing is a brilliant way to just have fun and let those endorphins fly. Oh, and the best thing about it is: you don’t even have to be a good singer for it to work.
Also, have you ever heard a song come on that you haven’t heard for ages and you are instantly taken back to a particular experience you had years ago? You are not only remembering, but reliving that moment. It takes you back to it like you never blinked an eye. It’s powerful.
I came across a video of Henry, an elderly man in a nursing home, who gets to listen to music from his youth, and the reaction is priceless:
People ask me that a lot at the moment. How do I stay healthy? Do you have any Anti-Aging tips for the brain?
The answer is: Yes, I do. There are so many things you can do!
Friday’s five ways to keep your brain young. Of course, there is SO much research about that and you can find tips everywhere, but I want to share my favourite tips with you! Some of them are very simple, and maybe even obvious, but ask yourself: Do you really do all that?