First: what we don’t need - We don’t need to find another web site, to complete another checklist, to join another group, to pay just one more co-pay to a professional with a different set of initials after their name than has the “gang of five” (or however many professionals you now consult), nor do we need to attend another conference. And for sure, we don’t need more and more pills.

Stand up, Speak up, Listen, Act.

Richard

I could write several books about what I don’t know, or I could simply say I don’t know what I don’t know and leave it at that. One of the things I don’t know for sure is why my newsletter appears and prints out differently in many of the printers of its readers. It looks great when we lay it out on my computer. All the columns are matching up, it’s easy to read, even for me who doesn’t have the strongest eyes in the world.

There should be a line below the title and before the copy begins that says if you are having trouble reading this click here. Clicking on it, I have been told, should reformat the newsletter so if “fits” your email provider’s formatting requirements.

Others have told me when they open their email and it is my newsletter, it doesn’t look nor does it print like it did/does on my computer. It is a mystery to me why this happens. When I asked the folks who run my expensive, but greatly needed and well-maintained email service (Constant Contact) they tell me each computer, email provider, each printer formats things the way it wants to, not necessarily the way I did.

Some readers have told me they print out the issue and use it in their group meetings, or give it to others. One person just told me it took her computer 30 pages to print it out. Even I am not that long winded! Something in the hard/software decided to print out each of the columns separately. Why? Neither of us seems to know. Like dementia probably of the Alzheimer’s type, if we don’t first know exactly what, why and how the error is caused, it’s impossible to imagine and research what, why and how to fix it. We just guess based upon our ignorance.

I am sorry that it happens to some, but I just do not know what to do about it.

Richard

Alzheimer’s groups and medical ethicists are expressing outrage over the suggestion by British moral philosopher Baroness Mary Warnock that those with dementia should consider ending their lives early.

There are obvious moral implications of the comments that 84-year-old Baroness Mary Helen Warnock shared with the Church of Scotland’s Life and Work magazine last week, in which she stated, “If you’re demented, you’re wasting people’s lives — your family’s lives — and you’re wasting the resources of the National Health Service.”

If this represents a legitimate belief of moral philosophy, I guess that makes me an immoral philosopher. If you want to end your life before your time, that is your decision to make. Please do not decide to end your life in order to save the government money and/or make your family happy. Looking for, creating, and maintaining purpose in our lives is one of the foundations of a fulfilling life. You do not have to give up purpose in your life just because some of your cogitative skills are slipping. You do not have to give up your life in order to make others happier in their lives. Only they can do that for themselves.

Baroness Warnock, please do not throw in your royal towel if you are diagnosed with dementia of this or that type.

Richard

From the August Newsletter

Dear Richard

My family wants me to take vitamins, lots of them. Every time someone reads an article about this or that vitamin, they want me to go out and buy some. What vitamins do you take? What to do you think about taking vitamins when your cognitive skills are slipping?

Dwight E.
Denison, TX

Hello

So much to worry about. So little time to worry. I too sometimes feel bombarded by well meaning friends who want me to start taking more, usually much more of this or that. Remembering that I am not a physician nor do I think I am a nutritionist…I’m just a person who wants to ingest the right things to help me live a longer and “better” life…this is what I think and believe about all the hoopla about neutraceuticals, vitamins, drinks, colon cleansers, and hand washing.

Neutraceuticals are usually composed of over the counter something(s) combined into a drink or pill or something you sprinkle on your morning breakfast cereal. The FDA is just starting to think to look at these. As they stand now they tend to be much more expensive than the sum cost of their over the counter/grocery store/organic farm ingredients. And remember all their claims are tempered by the small print warning that the FDA has substantiated none of the claims they make. Think what you like about the FDA, but they are the best we have going for us right now.

And now here comes vitamin D. When I was younger vitamin C came, then it was vitamin E, then a swarm of B’s showed up. Recently fish oil raised its stinky head.
The appeal of Colon cleaners/cleansers/scrubbers seems based upon a myth that what we eat stays inside of us for a long, long, long time and we ought to ream out the pipes every so often. Fiber pills, vegetables, and a nice house salad with a lot of thousand island dressing on it are also achieve the same goal at much less cost. And the last thing our sensitive intestines need is to be reamed out.

I just don’t have the time, the mental energy, the memory space, nor the long-term interest I once had in these “hot” vitamin of the month issues. I’m sure having a deficiency of any one of these is bad, sometimes really bad. But how much is enough? How much is too much?
What to do about all these “keys” to longer life, strong bones, fewer heart attacks and strokes, sharper cognitive skills, and a better sex life?

I’ll continue to take my generic “one-a-day” and let younger minds and bodies worry about trace elements and nano particles, rocks and minerals, auras and vibes, shark marrow and finely ground rhinoceros horn, etc.

Richard

Hello, My name is Richard and I have Alzheimer’s disease.

I accept this honor, not just for myself, but also for all my kindred spirits who stand up and speak out.

For in my mind and heart I truly believe there are thousands, if not millions of folks who, when they were at my stage of my declining cognitive skills they too could have been standing here. As for what I did, to bring myself to the attention of this august awards committee: in my mind and heart all I did, was, to simply be myself.

A self who happens to be living with the diagnosis of dementia, probably of the Alzheimer’s type. Therefore: I accept this on behalf of all those who stand up and speak out about what it is like to live with the symptoms of dementia. If we do not speak up and speak out, how will others ever know what it is like to live with the symptoms of dementia?

After all, most of you sitting in this audience do not share the same conditions within your hippocampus as I share with 10 million other Americans who are living with some of the symptoms of dementia.

I am neither particularly courageous nor brave - ask the small garden snake who lives in and currently rules my garden! I am Richard, a person living with cognitive skills that are slipping.

I am Richard who speaks from his psychologist’s mind and his own heart. I combine them both and offer others my reactions to my life living with dementia.

I thank all the members of the Pioneer Network who were responsible for the decision to grant yours truly this honor.

Legacy, what do I want my legacy to be? Equally important, how can I tell you in ten, now actually 8 or less minutes?

What do I want to be remembered as? A fine fellow? A great father, a wonderful grandfather, a loving husband?

I want to be remembered for my spirit, my commitment, my determination, as one of the first persons to add a voice, a presence to something that was previously just a diagnosis, just a bunch of words. And that voice and those words successfully altered a gentle euphemism for goaded, prodded, relentlessly urged all National and local organizations who use my diagnosis to raise funds, who feature people like me who are living with the disease. I helped begin the process of refocusing their efforts on the whole people who are living with the diagnosis of Dementia.

We aren’t saying good-bye. We don’t want others to say good-bye to us. We say Hello! And Damn It, that we have to keep telling others this fact of life.

I was and I hope still am a herald, an instigator, an agitator, a voice of urgency and reason for that change. My hope is as a result of my kindling a few sparks, they changed their budgeting priorities. They changed the make up of their boards of directors. They changed their program emphasis - and included people living with dementia, lots of them in each of these areas.

Thus far, I have clearly been one of the first to alert them, and I am clearly one who feels and believes they have much much more to change before it can be considered one of my legacy achievements. I would like to be remembered as a person who openly, directly, honestly, and compassionately witnessed what it is like to live with Alzheimer’s. And, as a result of my witnessing, my writings, and being myself in a public way: I made a difference in how many many folks think of themselves and each other when the symptoms of dementia intrude into their lives.

I want to be remembered as having been a forceful, reasoned, sometimes humorous voice in a growing but all too small movement of folks who now stand up and speak out.

I want to be remembered as having been a role model, a catalyst, a leader for other folks in the earlier stages of dementia. I want them to know and see that after the emotional upheaval caused by hearing the diagnosis that there is still much much life to be lived, appreciated, and created.

I want them to know, to feel, dare I say DEMAND to be treated as whole people. Not someone who is in the midst of a long good-bye. Not someone who is half-full and half empty.

I want professionals and caregivers to enable us to remain active, responsible, growing, and involved in a purposeful and a purpose-filled life.

With this element of my legacy quest, I have been modestly successful. I have shared countless tears with kindred spirits. I have shared countless personal moments with couples struggling to keep loving each other, keep supporting each other, as the symptoms of dementia overwhelm and fundamentally change each of them, both of them, and their relationship. I hate this disease!!

And finally, at least for this ten-minute sneak peak at my legacy I leave to you, the members of this audience, the members of the culture change network the opportunity to create your own legacy. For you are the real leaders and change makers of today, and tomorrow. I applaud the blood, sweat, tears. The time, money, effort you have already invested raising the consciousness of “them” whom ever them is for you, I honor your legacy of change that has brought some of our nursing homes, some of our assisted living communities, some of our caregivers to the brink of embracing, translating the words person centered care into HUMANIZING DEMENTIA CARE. I want to stand with you in the quest to make this real for as long as my symptoms will allow.

I want others with dementia to stand up next to you and to be treated as the primary stakeholder when you all change the culture of aging in our country.

Unfortunately as most of you already know, the world of long-term care is full of well-intended and well-meaning folks, who still do not seem to get “it.” “It” being that I and folks older than I - I and all the folks like me who are living with declining cognitive skills - we are each, all, and always whole human beings. We are each in our own gloriously unique ways, different. We each have the responsibility, the right, and to a greater or lesser extent, the capacity to be difference makers in our own lives and the lives of others.

I know there are some folks deeper in the symptoms of dementia than I who do not speak. I know there are some forms of dementia other than the one that plagues me that produce many and much more troublesome symptoms than mine. But I still believe you change agents have an obligation to try, to try harder, and to try differently, to involve and communicate with all those whose cultures you seek to change.

I know we share these values: “know each person,” “put the person before the task” and develop “relationships” are the key.  Please carry these values into nursing homes, assisted living communities, memory units, and indeed into all of our society.

Please enable, please re-able some of us who have forgotten what it is like to be a whole person. Help us to help ourselves. Help us to help YOU help us live fuller, more joy filled and purpose-filled lives.

Let’s change the way aging and growing older is thought of in our country. I am a work in progress concerning how best I can respond to to this challenge.

What of my pre-legacy legacy?

A friend of mine, Kim McRae, asked Joanne Raider, one of the founders of this network we celebrate today, what she saw as my legacy:  Joanne said, “What I know and admire about him, what I will remember him forever for is his persistence, his Insistence that people with dementia be treated as a PERSON. He’s unrelenting about it.  He doesn’t back off!!!!!!!!!!!!!!!!”

That’s certainly accurate.

I AM unrelenting. I don’t back off. I believe in my heart that that backing off, waiting for others to ever so slowly change their ways and their organization is not what is needed now. Please, all of you: DON’T BACK OFF.

But what is left after I must relent?  After I must back off - in the end - after the end…  The legacy each of us leaves is ourselves.

I would like to be fondly remembered as Richard, the tall guy with the beard who lived for a still as yet to be determined number of years as a giving, challenging, loving and engaging human being. I am Richard who seeks to live a purposeful and purpose filled life up to and through my last breath.

From the instant I have drawn my last breath, all that will be left of me are the memories that others have of me.   How can and does that impact the way they live their lives? The way they see themselves? The way they live with dementia?

Stand up! Speak Out! It’s not just all we can do - It’s all we must do. It’s a moral imperative to re-examine re-value the culture of growing old in our country. Let’s all pledge to renew our commitments to inclusiveness, empathy, giving, and loving - and being the leaders and change agents this nation needs.

I am Richard, and I have Alzheimer’s disease. Thank you again for this Honor.

Richard