DAI Webinar Introduction — 02/22 & 23/2017
I am pleased to be here with you today and want to thank Kate Swaffer for the idea and DAI for making this gathering possible.
Thank you ALL for joining us. I see some faces out there that I recognize and some that are new to me. For those of you calling in, I cannot see your face but I know it’s a friendly one!
Some of you have stayed up very late to be with us, some of you have gotten up very early.
And some of you can FORE-TELL THE FUTURE … because it’s already tomorrow where you live … please let me know how today goes.
Before we view the documentary, I would like to tell you a little about myself, say a very little about the disease called Dementia/Alzheimer’s, and explain how the documentary came to be.
My comments will take approximately 10 minutes and the documentary runs for 15.
Following the documentary I will attempt to answer any questions you may have.
• • •
The story I am about to share with you is very personal one. I’m comfortable with crying in front of you, however it is very difficult to cry … and talk at the same time.
So if I do get choked up, I will pause, take a few deep breaths, and be right back. Thank you for your understanding.
• • •
Gregory, my husband of over 41 years, who I met in the late 70’s … and lived with in a committed, same sex relationship before it was fashionable to talk about such things publicly … was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship.
We walked the Dementia/Alzheimer’s path together for 12 YEARS … He was NOT a victim of Alzheimer’s … but rather a HERO.
He lived as well as possible as the disease progressed and I was able to keep him safe and to support him by helping him to be free of worries, responsibilities, and fears.
I was able to help him compensate for his diminishing abilities while always trying to make sure that the respect and communication which defined our relationship never faltered.
I made sure that our daily life was full and rich and meaningful. Our life was filled with much laughter as well as many tears, joy as well as sorrow. And above all, it was filled with LOVE.
The times were not easy, but we persevered.
Admittedly, it is easier to talk about our adventure while looking back … when compared to the SOMETIMES HELL it was during the actual experience Dementia/Alzheimer’s path.
Alzheimer’s is not just about failing memory, as some people believe, and as you probably know.
It also affects the thinking process, bodily functioning, and day to day activities.
For example: Think about the skills and steps necessary in taking a drink of water. While this is automatic for most people, it is NOT automatic for a person with advanced Dementia!
First you have to identify that you are thirsty. Then you have to understand that taking a drink of water will help satisfy that need.
You find a glass and fill it with water, not overfill it, and pick up the glass of being careful not to knock it over.
You lift it in your hand, but not so strongly that you break it and cut yourself. You lift it at the correct angle so as not to spill the water.
You aim the glass towards your mouth, get the end of t e it to your lips without hurting yourself, since you can’t really see your lips, and allow just enough water to fill your mouth without letting it run down your chin.
You swallow the water as you are lowering the glass back towards the table at the proper angle, so it doesn’t fall over or spill.
You finish swallowing the water carefully so it does not go down “the wrong pipe” causing you to choke.
If it does, you need to remember how to cough with enough strength, to be able to get the water out of your lungs.
If you swallow incorrectly too often … you can get too much water in your lungs … which causes aspiration … which can lead to pneumonia … and eventually could lead to death …
… all this for the want of being thirsty and taking a drink of water.
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This is just ONE example of the breakdown of abilities; cognitive as well as physical, mental, physiological, psychological, social, emotional etc, which occurs with dementia … and the thousands of ways in which the disease expresses itself. Usually different for each person affected!
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Gregory lived at home in our condo in Evanston, Illinois, in the U.S.A. for 10+ of his years with dementia.
The last 18 months brought him to the point of needing such intense care, that short of turning the condo into a hospital ward, with 24/7 support staff, I was no longer able to provide for all of his needs while at home.
We were very fortunate to find and to afford, close to home, the Lieberman Center for Memory Care. He began there on private pay which transitioned into government supported Medicaid.
I now was no longer fully responsible for Gregory 24/7 and was grateful to have a team of people to support his medical, living, and safety needs.
The medical staff included me in the team for all decisions and were always responsive to my inquiries and suggestions as well as requests to be educated about the best health practices available to us. I always had the final say about Gregory’s care!
Gregory enjoyed most of the activities and “hub-bub” of the place. Being with other people and developing a new sense of community helped him greatly as well. He made friends and he never once asked, “What am I doing here?”
I continued to provide much of his social/emotional support and spent time with him every day.
The center provided excellent medical care but even though the ratio of caregiver to resident was higher than that required by the State of Illinois, there is never enough time to really give residents enough one-on-one loving attention.
By now Gregory no longer had use of language and was not able to do much for himself. He always knew who I was and was always happy to see me and we developed new ways of communicating.
For the most part he was happy and content and peaceful in his new life. When problems rarely surfaced at the care center, they were easily taken care of.
• • •
I hired a day-man to be with Gregory from 11:00 AM - 7:00 PM every day. This gave me piece of mind during the time of day when I was not able to be there.
Manny provided Gregory with companionship, help with meals, made sure the aids knew when Gregory needed to be cleaned up. He ran the DVD, TV, and music for Gregory. He helped with napping, exercising and stretching.
Manny kept him hydrated and plied with treats: cookies, pretzels, chocolates, and donuts, all the things Gregory loved. Manny helped Gregory get to building funtions, read aloud to him, looked through picture books with him, and spent a lot of time outdoors during good weather.
• • •
Hospice entered the picture during the last year of Gregory’s life. Death was not imminent but when you can prove continuing need and continuing decline, our government will pay for hospice care.
Hospice was so supportive to Gregory. I am grateful to this day for the medical help they provided for him but also for their helping me understand the nature of the Dementia’s trajectory and in the end, the process of dying.
One day in early October, I received a call from Hospice that informed me that it looked like Gregory was preparing himself to die.
It was actually a surprise, first because in some ways, having been on the Dementia/Azheimer’s path for so long, I probably believed that Gregory would never die.
Secondly, he had been relatively healthy and the previous winter had gotten through three major bouts of coughs and colds, most likely Pneumonia, on his own.
It took him three days to finalize his preparations to die. Before I left on Saturday night, I once again told him to take care of himself, and to not worry about me when he was ready to leave us.
He was able to open his eyes briefly and give me one last kiss, after having been in a coma for those three days. I considered this a wonderful miracle!
The next day, he peacefully began his next adventure on the other side of life as we know it.
I will not go into detail about the grief I felt; and trying to come to grips with the finality of death, the meaning of life, and evaluating our 12 years of living with Dementia … but suffice it to say that Gregory and my love for each-other was so strong that it helped me through.
Great love creates great grief. They go hand in hand. It does get easier over time but grief rears its emotional head now and then when least expected.
I am able to sit with my emotions, ask them what lessons they have brought me, and slowly I begin to feel better and am able to go on with my day. Gregory will always be with me … true love never ends!
• • •
Whether you are the one who has received the diagnosis of Dementia/Alzheimer’s, or the one who loves the person who has … the way in which dementia progresses and expresses itself over time can be one of the most challenging, painful, frightening, confusing, and frustrating experiences you will ever encounter.
You will not always be at your best … but if done well … and with love … it can also be a time of renewed love, creativity, and many unexpected gifts.
As my friend Kate Swaffer says, “the diagnosis of Dementia/Alzheimer’s does not have to be a DEATH SENTENCE, one can choose to live a full, meaningful life and find ways to deal with its progress.”
I have said that Gregory was not a VICTIM of Alzheimer’s but rather a HERO! Recently, in looking back, I have begun to be been able to say that Gregory … AND I … were not victims of Alzheimer’s … we were BOTH … HEROS!
• • •
The documentary, ALZHEIMER’S: A Love Story, which you are about to see, follows Gregory and me for a week towards the end of his life.
The documentary was done in March of 2015 by the son of Gregory’s college roommate and best friend. Gregory passed seven months later.
Gabe, the son, created the documentary as part of the requirements for one of his college courses in film making at Chapman University, Dodge School of Media Arts in Orange, California.
The message, which I believe is a beautiful one, takes Gregory and my 41 year love relationship and Gregory’s 12 years living with Alzheimer’s, and distills it into a moving 15 minute documentary.
I think you will agree as you experience the story … that the same sex couple issue … and the Alzheimer’s issue … almost seem to disappear … what emerges is a story of any two people who love each other very much … and what happens to that love when any long term, catastrophic disease strikes.
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After the documentary I will try to address any questions you may have. Now, lets watch. There will be a brief period of your computer going black as the documentary begins.
Q & A Intro After the Documentary
The documentary is a tough act to follow! I would like to again mention that a copy of my bibliography for this webinar is located on my blog: http://mhorvichcares.blogspot.com. You can also check my website www.horvich.com for links to my many projects.
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Just a gentle reminder that this Q&A is based on the Documentary you just watched and on my experiences Gregory and my journey with Dementia/Alzheimer’s.
In fairness to those signed in, it is not the time to tell your story. If you have a question I will try to address it but if you want to tell your story, find my blog, leave a comment, and I would be happy to open a conversation with you.
I’ll now hand the webinar over to Kate for the Q&A.