On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.
Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.
As part of our World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, on day 1 of #WAM2018, we share Dick Watsons story. Thank you Dick for allowing us to share your story; DAI is proud to have you as a member, and actively involved in one of our peer to peer support groups.
To begin, my name is Dick Watson. I live in Vancouver, WA and I am a member of Dementia Alliance International (DAI). I’m 61 years old and was diagnosed with young onset Dementia 6 years ago. The diagnosis was of course hard. Add to that the fact that I have lived with extreme chronic pain from breaking my back twice 27 years ago and having a spinal cord injury as a result. It’s been a long hard road. But I have kept positive through this all.
There is reason to tell about about my back. That is because for about 22 of those years I was on extremely large doses of opiate pain medication. I even had a pain pump with fentanyl going directly to my spinal cord. At removal of the pump I was at morphine equivalent dose of 2000mg/day. I will say this now.
The chronic pain stuff effects the Dementia I think, and not because of the meds but because of pain itself.
Fast forward to 6 years ago when I was diagnosed after complete physical and blood work, and 2 neuropsychological tests a year apart showed Young Onset Dementia. The Dementia was caused in a major part by 20 years of high dose opiate use, was my Dr’s guess. Worst day of me and my wife’s lives ever. We went home numb from the Dr’s. We were told to go see Alzheimer’s.org so I started learning all I could about this disease, and mine in specific. After a bit of time we did all the legal stuff with moneys, property that was joint now in my wife’s name only. POA’s done, Wills changed, Social Security set. Did all the needed things.
The first 5 years of my dementia went by and I was living very well with my dementia. We traveled, bought art to keep me engaged when needed, saw and spent holidays with family, you know life stuff. We learned to adapt to this dementia thing well. We are very good at adapting. We were told 3-30 years. In reality average is 6-10 years till death. I am now in year 6 and am having many more short term memory issues, as well as more cognitive issues. Well into mid stage dementia. The biggest loss this year was in April. I had been having increased difficulty speaking. Forming words and talking were hard. Then one morning I got up and did my normal routine. My wife got up and I went to say good morning and literally babbling came out. No words, just sounds. We were both taken by surprise. We thought maybe I needed to eat and get my meds in me. No help. So now it’s been 5 months and the only thing I’ve said is to my wife, ” I love you” twice, and that shocked both of us.
Both of us were elated when that happened.
Adapt is a strong word in my house. That’s what we have done. It’s what we do, and damn well I will add. I communicate using my cell phone notes app. I found and downloaded a Text to Speech app to talk when I need to. It’s cumbersome but it works for what I need. I lost the ability to write by hand a long time ago. This makes a communication device a must, I have no other way to communicate.
Needless to say, losing my speech has changed the speed that it takes to have a conversation, much slower. There are a ton of challenges to face. One that gets me is not being able to talk during heated conversations. Or when I get frustrated that I am not making myself understood. I get jumbled up and can’t talk. So I say a bunch of sounds.
Yes this is frustrating as hell. Yes it has effected who will spend time with me. Yes it’s slowed me down even more. Yes I hate it. But we all know Dementia will take what it takes when it takes it and we have no control over it.
However I do have a choice of how to react. I have my moments of darkness and depression. I’m on meds for that. But I have more moments of seeing good. I pay attention much more, don’t always remember what’s said. I am very good at reading expressions and body language which sometimes says more than words and is truthful mostly. I can’t be told I’m running at the mouth. There’s more that this but I can’t remember them.
All through these past 27 years for the most part I have chosen to be positive and active. I must say that my wife has been a huge part in this, and our closeness of a marriage, having 37 years of marriage tighter than most. She is the best care partner there is. Without her I would not make it through this.
I was taught a ton of ways to mentally control some of the pain, and still use some of it. I also have a bunch of friends, some who have even committed to be with me and my wife till the end of my journey. I don’t drive but friends pick me up to go to coffee, my wife drives a lot as well. We still go out to social events, funny plays, wonderful dinners and go to very cool places. We go to the beach where I can rent a power beach wheelchair. This allowed me to walk the beach with my wife after 15 years of not being able to. All this is helping me hang on longer. My faith is a big part of helping with the emotions and losses. I set up a Dementia support group at my church to help those in the same position we are facing now. The fact that I’m a positive kind of guy also helps, a lot. And besides, the other alternative would be allowing the Dementia to go faster.
So what else is there but to fight the Dementia and live my life to the fullest I can while I can.
Besides, I’m one stubborn SOB and am staying long as I can. Not done yet!!