June 27, 2011 tion …bringing awareness
Issue No. 11
The Memory People Page In last week’s newsletter I touched on the importance of awareness. As the week went on, we had some good discussions about awareness on Memory People, not only what it is and how do we raise it, which were my first questions, but also perhaps, how do we begin within ourselves. How does acceptance and denial affect our awareness, and in turn, the awareness we share with others?
one person at a time…
It seems to be a more multi-faceted issue than simply understanding this disease and talking about it.
One overriding sentiment I have seen this week is that it is much easier to get the information about Alzheimer’s through your head than it is to accept the pain and devastation of it in your heart. As with most diseases, the statistics alone do not bring us to true awareness. What does are the things that speak to our hearts; the patients who live this disease that say ‘walk a mile in my shoes, try getting away from this disease for an hour, or even a minute. Try living these foggy, lost days, day after day’. And also the caregivers, who helplessly watch their loved ones slip and become increasingly confused and blank. And in that pain and sadness we find ourselves faced with our own acceptance or denial of it, as a patient, caregiver, family member, or friend. Everyone who comes face to face with this disease is faced with this issue of acceptance or denial. And even more painfully, it doesn’t appear to be a onetime issue. Each time this disease takes something more away from us or our loved one, we find another level of acceptance is required. This week we have more writings by some of our own members who are walking with this every day. I invite you to read these insights, let the words go deep, and in the pain and sadness, walk this road with those here, and with your loved one who needs understanding and someone to be with them in their world. As Rick says, there’s no time for denial. This disease does not wait for us to accept it. When we let this in to our hearts, and take a step toward acceptance, a wonderful thing can happen. In the midst of the pain, we can find a relationship and a level of connection with each other that many never find. Life becomes more precious, time becomes more treasured. That’s what has transformed Memory People from a group into a family; walking this journey together, in support, awareness.. and acceptance. Cont’d next page..
In the midst of the pain, we can find a relationship and a level of connection with each other that many never find.
June 27, 2011
Issue No. 11
Linda DanielsWhat I need is a stress free day. If there is no one telling me what to do, and please don't yell at me, or anything loud like playing music, that is all overwhelming for me. Just talk to me like you would want to be spoken to. If I ask you to repeat something please don't get upset with me, it is because I am trying to understand what you have just said to me. If I have trouble remembering things, I write things down. I have several pages on how to operate different things in my household if I can't remember how to operate them again like I did a year ago. The main thing I have discovered is that I had a lot of stress in my life and in my mind and my body was shutting down because of it. I thought I could handle all that since I was a caregiver for 23 years but since I got rid of the stress and was put on Aricept I am like a brand new person.
Tom MinerIt really helps if a person doesn't talk down to me like I'm an idiot.
Donnamarie BakerI can only speak for early years, but with good days and bad days what you may need varies. One constant I can say is fear. So I guess an understanding that we always have fear would be number one. There is fear of what the future will bring of course. We know what is waiting for us down the line if we live that long. Fear of what this disease will do to our loved ones. Will they lose everything caring for us? What will happen to me if something happens to them? Who will be there for them when I can’t be? Fear on some days for no reason. Just a free floating anxiety that we can’t explain. But it makes us pace; or cry; or cling to you or follow you everywhere. It gives us nightmares.
The world we always knew and were familiar with is gone. We are never quite sure anymore.
Fear on good days. Even if I am having a day where you wouldn’t realize there was something wrong with me unless I told you or you knew me well, fear is there. And that fear is because even if we look and talk and act fine, the world around us is not solid. The world we always knew and were familiar with is gone. We are never quite sure anymore. We have to fight to understand what is being said, what we are hearing, how things look, what exactly is going on. It’s like being dumped in an alternate universe where nobody told you the rules. It’s like trying to grab smoke.
So understanding that constant fear and uncertainty.. even when all seems fine, it’s not; not really. Take a few extra minutes to reassure us, or make sure we are not getting overwhelmed. If you have to repeat something, or explain it again, or just have patience because we are walking slow because even the ground itself betrays us. This isn’t the best comparison, but you remember when you learned to ride a bike? And somebody ran alongside to catch you or steady you if you started to fall? That’s what helps. Knowing you will be there to steady us and help us when we start to fall.
Cont’d next page..
June 27, 2011
Issue No. 11
Pam Brown MargolisWhat I need from others is a little time; give me an extra second or three to answer the question. Don't snap your fingers and expect me to be able to rattle off an answer of any kind like I used to be able to. Which leads to...remember, while I am still me, I'm slightly different. Don't make me feel bad for not being the old me or remind me of what I used to be able to do. Just give me the space to be me; even if that does mean forgetting the word for rubber band or taking too long to answer a question.
Chris Westfall BallardI think one of the things that has been hard to lose is being needed. I contributed a lot in our day to day life, was active politically, earned a decent living. Now I'm the one that needs the help. But I still want to be treated with respect. My family is really good not to patronize me. But respect is a big deal, especially when you realize at some point in time you will be entirely at someone else's mercy, when the progression nears its end. Don't get me wrong, I don't dwell on that end-time. I do live each day as it comes.. lol! But it's still coming. I need for others to be patient when they're dealing with me. I do the best I can, still. My husband just goes with the flow, but even he, once in awhile will throw his arms up in the air and decide it's easier to just DO something than to explain yet another time how to do it. That IS tough, when we simply do not understand. I know this sounds needy, but so be it. I need to be kissed, hugged, and told "I love you". It's so easy for us to just shut off from humanity, and I sure don't want that to happen. I know I'm not quite the person I always was. I think everyone needs those things, be it the patient or the caregiver. We miss the intimacies, and love can be shown in so many ways. We just don't want to feel like we're a burden, ever.
~ Thank you to everyone who contributed to this article. We appreciate your openness and honesty ~
Hold Me Like The River Jordan And I Will Then Say To Thee You Are My Friend Carry Me Like You Are My Brother Love Me Like A Mother Will You Be There? Weary Tell Me Will You Hold Me When Wrong, Will You Scold Me When Lost Will You Find Me? Will You be there by Michael Jackson
June 27, 2011
Memory People is on Twitter! Follow our group’s news and updates @MemoryPeople.
Chicken Soup… This is an excerpt from a post by Rick Phelps, about his book “While I Still Can”, and why he’s writing it. May 7, 2011
"You may say I'm a Dreamer, but I'm not the only One..." Dreamer. That I am. I see things different than a lot of people. I see this book we are embarking on as God's work. This whole journey has all been planned out already. I have known since my diagnosis what I have to do, and God has known from the beginning. Do I wish I never had gotten this terrible disease??? Of course. But I know, in my heart of hearts, God has a plan for me. Alzheimer's has been around for many many years, and no one, well not many, give it a second thought. Till they’re affected. Well, this book is going to change that. I am going to write it in a way that the reader will be walking this walk right along with me. And by the end of the book, the reader will be talking about things they never realized about Alzheimer's... but most of all, how to not deny this disease, if it comes into your family. There will be light parts. But for the most, I want to grab the reader from the first page, and take them on the rollercoaster ride of a lifetime.
Issue No. 11
Alzheimer’s Association Care Consultants The Alzheimer's Association has a very valuable program to help you after you or a loved one has been diagnosed with Alzheimer's Disease. Care Consultants can answer any questions you or your family may have. They set up a plan, tailored just for you, so you can navigate through this new journey. This is an ongoing program, your Care Consultant is always just a phone call away, to answer any questions that may come up. As you can imagine, the understanding, encouragement, and peace of mind this brings is invaluable to all who are going through this. To find a Care Consultant in your area, call the Alzheimer’s Association at 1-800-272-3900
We want to welcome all of our new members to Memory People! You have found a very special family that will be here for you through thick and thin. In Rick’s words, we fight this fight together, not asking for a handout, but just a hand up. Welcome! We also want to wish a very Happy Birthday to all our members who are celebrating a birthday this week. We wish you blessings and a wonderful day with the people you love!