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The Ribbon - Care for Caregivers
Volume 8, Issue 2
January 29, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

This issue is running very late due to computer problems on my end, a lot of overtime, and then getting sick with sinus problems. I'm telling ya, when it rains, it pours. :-)

I will start off by telling you that Nick's doctor encouraged us to go ahead and have the procedures done to find out why he is anemic. There were some minor things found but the answer still isn't clear. The doctor said he would wait until the biopsies came back before he decided as to whether to do the procedure to will show the small intestine.

I have seen no progression in Nick's dementia due to these procedures so his doctor said it would be ok for him to undergo the arthroscopy on Feb. 11. This procedure will have him under for about 1 to 1 1/2 hours so it won't be too bad. Nick said he is very happy to be having this done as maybe he will be able to come off the pain pills. The doctor told him that hopefully he will be able to go back to work. Now that was something I was happy to hear! (laughing)

Mrs. Roger's 4th grade class in Pembroke, NH has adoped the Bridges Unit. They created some beautiful artwork and sent it to us. It is now on our main bulletin board in the hallway and each patient was able to pick their own picture to display in their room. This project was a real winner with our patients. They oohed and ahhed over each picture. They got a laugh out of the Patroit/Titan pictures. Guess you just can't take the football out of the boys. (smiling) Jane, our Activities Therapist, did a group session showing the artwork and part of that was to work on some things to send back to this special class. What a way of "Paying it Forward".

This Sunday will be a change for me. I will actually be working on the 20th anniversary of my 29th birthday. I've always heard everyone complain about having to work on their birthday and now I know how they feel. I plan to enjoy it no matter what.

Well on to a great issue....

Hugs,

Jamie


It's a Pity Party... and You're Invited!

If you are ever in the mood to throw a pity party call me, I've become a seasoned planner (although these kinds of things are more apt to be spontaneous than planned). You know the kind of party I mean? The kind with a cake made of layers of guilt and punch spiked with just the right amount of woe-is-me. The kind where partygoers sit around lashing themselves with wet noodles for all the "should haves" not done.

I had one recently - appropriately held over the holidays - but nobody came. I mean, what is a pity party without others to validate how wretched you feel and coo, "Oh, you poor thing"?

Pity parties are okay in moderation. They allow us to purge our souls of stifled emotions and let loose and let go. The set up for a party is easy. All you need is the right amount of stress, an ample supply of pent up grief or anger, and an event that triggers the floodgates to open. The clean up is a little more difficult. When it's over you feel like Humpty Dumpty with shattered pieces of self scattered all around. But unlike Humpty-Dumpty we can pick up the broken pieces, glue them back together, and come out stronger.

One of the keys to putting the pieces of self back together are friends - friends who somehow know you are hurting and who make you laugh just when you think you might never laugh again.

In the midst of my recent party I got a call from a dear friend in New York telling me she had a strong feeling that all was not right with me. Her soothing voice felt like comforting arms wrapping around me guiding me to a peaceful place of hope and renewal. Another friend in California sent me an email that lifted my spirits with a much needed laugh. She wrote to thank me for an international holiday greeting I had sent and apologize for not getting a greeting to me. I wrote back that she was mistaken. I had not sent the greeting nor had I sent many at all this year. After volleying back and forth on the super-e-highway -- with me insisting I hadn't send it and she so sure I had -- my friend said she was going to chalk it up to early dementia and start looking for a comfortable assisted living. I told her to hold off on the move and suggested that the greeting may have been some kind of Internet spam. She promptly replied, "Just so both of us don't feel a need to fill out paper work for assisted living, let me say... it was a physical card with greetings from around the world signed by you". With that the light bulb went on in my brain, "OH THAT CARD! I thought you were talking about an email. Looks like I'm the only one eligible for secure housing...!" My friend came right back with, "Can I be your room mate? You're so much fun!" Our cyberspace conversation reminded me of the old Abbott and Costello routine, "Who's on First?"

I don't believe in coincidence. I believe things happen for a reason and it was no coincidence that these two friends contacted me at the very moment I needed them.

Friends are life preservers in the unpredictable sea of life. No matter how wretched we feel there are friends out there who care. Don't fall prey to the misconception that they don't because they haven't called lately. Pick up the phone and call them. Open your door and give them access to your world - they can't help you if they don't know what's going on. Don't fret about not being able to reciprocate. A time may come when they will need your help and you can give back joyfully. If you can't go out, invite them in. Don't worry about the house - true friends don't care if you haven't dusted in a while. Just put on a pot of coffee and tell them to bring the doughnuts.

Take a few moments every day to think of your friends. Send them love and light and pray that they remain free from pain, free from anxiety, and free from life's misfortunes. When you send out loving thoughts they come back to you in miraculous ways. This silent communication is the source of a sixth sense that keeps friends connected.


Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.


What is it like to have Alzheimer's?

What is it like to drive your car from Houston to Anchorage? Depends on the type of the car, the age of the car, how well you kept it up, where you are in your trip, if others are helping you with the drive, if you have enough gas or access to a gas credit card, if you have accepted the fact you must drive to Anchorage, whether or not you are afraid of arriving in Anchorage?

I was diagnosed with dementia of the Alzheimer's type about two years ago. I imagined, maybe hoped that some day I would wake up and a heavy velvet curtain would have fallen during the night. I would wake up to a world where I could see shapes but not enough details to know what or who they were, sort of like Plato's flickering shadows on the wall produced by the fire in the cave.

Instead, right now, I am sitting in my grandmother's living room looking at the world through her lace curtains. From time to time, a gentle wind blows them and the patterns through which I see the world change. There are large knots in the curtains and I cannot see through them. There is a web of lace connecting them to each other around which I can sometimes see. However, this entire filter keeps shifting unpredictably in the wind. Sometimes I am clear in my vision and my memory, sometimes I am disconnected but aware of memories, other times I am completely unaware of what lies on the other side of the knot. As the wind picks up it is increasing frustrating to understand all that is going on around me because access to the pieces and remembering what they mean keeps flickering on and off, on and off.

Thanks in large part to my family caregivers I am still functioning in the non-Alzheimer's world. I drive, I learn (although I seem to forget much of what I learn) I teach, I love, I mostly understand -- but not all the time, and not always the way others do. It is a constant effort to look around the webs and have to put effort into understanding and doing things that came naturally but a few months ago (cooking, reading, driving to a new store, remembering the recent past). Some activities hide beyond the knots and rarely have clarity (arithmetic, reading a watch, remembering what I just read). It is not a lot of fun, but it is doable.

Individuals have a cold, have cancer, have the measles. Alzheimer's has the individual.

Whatever Happened to Hope?

I always was a hopeful person. I was always hoping for something that wasn't there: world peace, no cavities, a "Father Knows Best" family, a thicker lawn, a more forgiving me, more money, a bigger and longer automobile, etc., etc. I know lots of people who are hoping their lives will improve when: the kids move out, she/he gets married, they get divorced, they are promoted, the brown spot in their lawn does not return next year, they finally retire, they live in a better place after they die. Since I was diagnosed with Alzheimer's disease I no longer hope.

I gave up hoping when I found out that hope was never going to reverse the quickening death of my brain cells, and my hastened death. I gave up hoping when I realized hoping by itself creates disappointment, because what you hoped for never happens exactly the way you hoped it would. Only Jimmy Stewart had all his hopes fully realized. Wasn't that a movie?

I abandoned hope when I realized how much of my focus and energy invested in continually hoping drained focus from today, hoping things would be better tomorrow. Hope does not keep me alive, itassures I will never be happy today because I am hoping things will be better tomorrow.

Since all I have for sure, and all I know for sure is today, why should I invest time and energy today hoping things will be better tomorrow, next week, in a year?. Hope helped me avoid responsibility for making the most of today. I spent time hoping tomorrow would be better than today. Hope was the reason I didn't make the most of today. Hope acted as a substitute for action today, because I hoped some one or thing would make tomorrow better, and my own actions today would not be necessary to make tomorrow better.

Some people, although not I, have faith that tomorrow may be better because some higher power has intervened in the affairs of men/women and cured their loved one of Alzheimer's disease. They hope that based upon their faith, a higher power will listen and then act upon their specific request. They miss part of the joy of today hoping tomorrow will be more joyful.

The fact that I know I have Alzheimer's disease motivates me focus on proactively making today better than yesterday, not hoping tomorrow will be better than today. Carpe Diem!

The Chase for Yesterday

In the compulsive gambling community, there is a principle they call "the Chase." After a compulsive gambler hits his/her first really, really big win, he/she spends the rest of their live chasing after the feeling of that first big score. Unfortunately, like with most addictions, more and more of the addictive substance produces less and less of a high. They will never ever feel the high of the first big win. You really cannot go home again!

I am in the early-middle of the Alzheimer's Chase. I am chasing the feeling I had prior to my Neurologist saying, "You have Alzheimer's. We do have a medication which seems to slow the progress of the disease in some people, for some time." Unfortunately, the prescribed Alzheimer's medication produced what felt like gallons and gallons of stomach acid. So naturally, I took another pillow to get rid of the stomach acid. My gastroenterologist told me the acid had begun to wear away the lining of my esophagus. "Ultimately," he said, "I could/would develop throat cancer unless something was done about the acid." Enter yet another proton pump inhibitor, and a pill for the anxiety I felt concerning the possibility of throat cancer. As pills gained control over those side effects, I started to come to grips with the diagnosis of this life shortening, and dignity stripping disease. I became really, really depressed! I took two pills twice a day in an attempt to bring my feelings back to the pre Alzheimer's days, or at least that was the goal. Oh, and by the way, since I had just turned 60 years old let's throw in a slightly enlarged prostate and two more pills. Swallowing one and a half hands full of drugs twice a day offered me the opportunity to become more anxious. How about doubling my anxiety medication? Having trouble with my libido, they have a blue pill for that. Don't forget the OTC stuff: Vitamin E, Vitamin C, Vitamin B's 1-100, Fish Oil, and a mega pill of multi vitamins and minerals.

I am an empty vessel into which I throw a hand and a half full of pills twice a day and desperately want the pills to reconstruct me into the person I was the day before the chase began - the day before I went to my Neurologist. When will the Chase end for me? What will my costly and all-out efforts to participate in the Chase accomplish for me? Will I ever be "myself" again?

What's it Like to Live in Purgatory?

My admittedly ignorant belief about purgatory is reasonably good people who have done some bad things in their lives spent an indeterminate amount of time living been heaven and hell. The living conditions get progressively worse. They have no idea when they will find out if they are going up or down. The decision is not theirs to make.

Welcome to my purgatory. The time between knowing I might have Alzheimer's, and the time I knew for sure I had Alzheimer's disease.

We hadn't been together since last Christmas. On the way to the airport, my daughter leaned over and whispered into my souse's ear, "There is something wrong with Dad." I had noticed that I was increasingly more forgetful. Nothing out of the ordinary. Just more of it. I felt a little more distant from everyone, but that comes and goes in all of us. I just wasn't as involved in the world as I used to be. I chalked that up to ageing.

A month later, while at my G.Ps. for my annual check up, I mentioned my Daughter's comment and my own observations of myself. "Don't worry," he said, "We have a medication for people with Alzheimer's." ALZHEIMERS, no way! I'm too young. I take good care of myself. I don't eat meat. I think good thoughts at least once every day.

Off to the neurologist for a year's worth of testing, a year in purgatory. I read books; checked dozen's of internet sites, went to my local Alzheimer's Association chapter and checked out a dozen depressing videos of individuals in the later stages of the disease.

Living in purgatory was getting worse. Stick me in my spine (three times!), inject radioactive something into my blood, and scan my brain again and again. Was I eating lead paint? Did I live near a chemical plant? The questions and the tests went on and on. Each time I thought this would immediately lead to the defining moment, and then there was another test. Other than my immediate family, I told no one about where I was living or why I was living there. Each day I dressed for work, left purgatory, and pretended nothing was wrong, or going to be wrong.

Finally, finally THE day arrived. While Doctors claim the diagnosis is inclusive rather than exclusive, why do they schedule so many tests that revealed nothing? Why did they exclude causes of something other than Alzheimer's with endless costly and occasional painful tests? I guess that's the way life is in purgatory.

Now I know, and with hindsight, purgatory doesn't look like too bad a place to live the rest of my life.

If It Talks like an It and Gets Lost Like an It, it is an It

Twenty-five years ago Theologian Martin Buber was concerned that our society was moving from I - Thou relationships to I - It relationships. We were treating each other as if we were objects rather than human beings like ourselves. This dynamic occurs in the relationship between caregivers and Alzheimer's patients. It is happening to me.

As the weave of the lace curtain becomes thicker, as the wind blows away even the most recent of memories, people do not have time to explain to me over and over again, things that I don't understand. They tire of telling me the same things over and over. They cannot depend on me to remember the simplest of instructions. My conversations are punctuated with "I forgot" and long pause while I search for the right words. The trust relationship between husband and wife, father and son, Grandfather and Grandchild is breaking. Not because we do not love each other as much as in the past, in fact now it is even more. It is strained to the point of breaking by the symptoms of Alzheimer's disease.

So, how do you relate to a Thou who does not act or think like Thou?

Inevitably, I will become an It. I will look, smell, and walk like a Thou, but I will not think and act like a Thou. It's no one's fault this happens. It just does. The Thou's start lying tothe It because they are tired of arguing with It. "The car has been sold," when in reality it's in the garage and we just don't trust It to drive. "The accountant is writing our checks" when in reality we just do not want to argue over the fact It cannot manage the family money. We still love Thou, but for its own safety and our own peace of mind we treat Thou as an It.

I don't have a solution. I don't want it to happen to me. I don't know how to avoid it.

They are glad they caught it early? Am I?

I have talked with dozens of people in their 30's and 40 is who have been diagnosed with early age, early onset Alzheimer's disease. I was 58 when I was officially diagnosed. After hearing the diagnosis, I cried every day for about three weeks. My Neurologist told me 95% of the people he diagnoses with Alzheimer's are not even tested. The patents, most of who are in their mid to late 70s would not be able to understand the instructions, let alone answer the questions in a reliable manner. I was tested for a year. I understood everything that was going on. I still do. Right now, I just forget a lot.

I now feel a sense of accomplishment when an hour goes by and I am not made aware of my illness by someone correcting me, or asking me a question I cannot answer. However, soon there is old Dr. Alzheimer with his pitcher of ice water to throw in my face and remind me it was the illness that caused me not to lock the front door at home, or leave the dog in the yard for almost a day, or forget to do this or that. I now almost never stop being aware of the illness. What was an occasional disruptor became a bother, is now a constant companion and reminder of my journey down the road less traveled (especially at my age).

I was in a group of patient's all-older than I was. Most of them denied they had the disease because I believe they could not conceptualize it, and since they didn't understand it, why should they believe others who told them they had something they couldn't see, feel nor conceptualize?. The group leader encouraged us to tell each other how we felt. Most all of them felt okay. they were a little irritated that they could not drive, etc, but life was mostly on track.

For those of us who "caught" it early, and in whom it was diagnosed early in the progression of the disease, we know what is going on. We still from time to time entertain Meta perspectives on behavior, our minds, or ourselves. For us early-agers we know that we are off life's track. We know we are wandering farther and farther away from the crowd, our families,and ourselves.

My Neurologist may be happy he made the diagnosis early on in the course of the disease. I am not so sure it was such a blessing.

What's the Up Side to Having Alzheimer's Disease?

Nothing that I can think of right of the bat. I talk more often and longer on the phone with my out of town family members. We talk more about what is going on inside us rather than around us. We get together more than weddings, funerals, and an occasional Christmas. I have discovered in my Brother and myself a resonance of thought and feeling that prior to the diagnosis I only sensed. My spouse and I have developed a new level and intensity of closeness, an intimacy about our life as husband and wife. One of my children retired early from the Air Force and moved to Houston to help his mother and me.

Along with my son and my daughter-in-law came my two Grand Children. Instead of seeing them four times a year, I see them four or more times a day! I started to write again in my Simple Abundance Gratitude Journal (list four things each day for which you feel gratitude and do not repeat them again on your list). I take longer walks with my dog Annie. We talk more, or at least I do.

I am a better teacher. I care about and try to show it to all my students, even the ones who do not care back. I initiate more email contact, and I promptly answer all who write me. I am planning on a long postponed raft trip down the Grand Canyon, and I would like to take a Wind Jammer Cruise (where passengers are a part of the crew on a large schooner).

I spend more time feeling and thinking about what is going on inside of me - sometimes this is good, most times, it is not. I am more in touch with ME. I have learned to recognize the difference between sympathy and empathy, and I have learned how to accept both of them. I don't care as much how well the Chicago Bears are doing this season. Formerly, a loss on their part on Sunday would produce a dour mood in yours truly for most of Monday. You might say I have a deeper appreciation of what I should and should not respond to emotionally.

I give more of myself and most times expect nothing in return. Is this the "up side," or is this how I should have livedin the first place? In either case, these responses to the disease feel good.

Pride Precedes the Fall

I have never thought of myself as a vain person, but I am prideful. I feel pride from the way I do things. I feel pride in my ability to accomplish things.

For the past twenty-two years, I have been making liqueurs for my family and friends at Christmas. I personalize the labels with the recipient's name. This year was to be no different. I cannot remember the multiple times both my spouse and son asked me if I needed any help. "Of course not" I claimed, "I have been making these for twenty-two years."

I forgot to include the vanilla in my amaretto. Made two spelling mistakes on the labels I printed. I was not aware of the mistakes until after I mailed all the bottles. I mixed up bottles and mailing addresses. Some people received someone else's bottle. I made one batch of Amaretto at half strength. In addition, those are onlythe mistakes of which I am aware.

I have always taken pride in what I do. I am no perfectionist, ask my spouse who is one! I enjoy the process of doing things, and most of my feelings of accomplishment come from the middle, not the end of projects. I care about how things turn out, but I take pride in the way I did them.

I have reached the point in the disease process where I make a lot of "mistakes," some of which I am immediately aware; some of which others make me aware; and, I suspect many of which I am simply unaware I made them. I feel very bad about this situation. I cannot always control how I perform the process; therefore, I cannot produce the feeling of pride in a process well done.

In fact, I am out of control of some of my own behaviors Why don't I ask for help? Why don't I seek out help? Why don't I let others help me to avoid the mistakes I know I am going to make?

My own sense of pride keeps me from accepting the help of others, especially for simple tasks. Tasks I have been doing for the past twenty-two years! The fact is at this stage of the disease; my quest for self worth has become counterproductive. I am becoming my own enemy!

Pride, coupled with Alzheimer's creates a "deadly sin". I am falling and losing my pride, both at the same time. Pride may hasten my fall!

A Stranger in a Strange Land

There are times when I feel and we all act as if I am a stranger in a strange land, only I am really myself in my own house. It is impossible to say just when my condition reaches the point where I am unable to be a rational and equal participant in conversations about me, my behavior, and how best I should be managed for my own good and to lessen the fears of others. My family acts as if the point has come and gone, I feel and think as if it is not yet to arrive. Perhaps there is no clear line of transition from taking care of myself to being taken care of by others, but as that time approaches, I would still like to feel a part of what is going on. I would like other people to listen to me and I would like to listen to other people. I would like other people to tell me what they hear and what they feel, and I would offer them the same from me.

My caretakers always live today with fears of tomorrow. If I do this today, isn't it just a matter of time until I do that? This fear and obligation of caretakers to take care of tomorrow today before it is too late creates situations that I am struggling to avoid. I can't argue with the logic. It is valid. I can't argue with the evidence. It inevitably happens with every one who has Alzheimer's. I can ask that I at least be a fly on the wall and listen to the cares and concerns of others as they talk about me. Sometimes they do it right in front of me or on the phone with others as if I am not even in the room. That makes me mad and sad. Mad at them and sad for us all.

Thou, yours truly, has started to become an It. Of necessity, my caregivers would argue, but none the less an It. The same words are used to represent me; Richard, Dad, Grandpa, my Husband, but what follows does not refer to who I think and feel I am. Mybehavior is treated as something apart from me. "It's not him, it's the disease." Unfortunately, I am both, and to the extent the disease has altered my behavior and thinking, it has altered who I am.

I am no longer who I formerly was. I am no longer like everyone, but there is still a good deal of me left. Am I half-empty or half full? What difference does it make in terms of how I am a full and equal member of the family?  It's tough for everyone! My heartaches and I want to shout:

" I'm a different Thou, not a quarter It and three quarters Thou."


© Richard Taylor, 12-22-03
Houston Texas
richard_taylor_phd@email.com

Reprinted with permission from Richard Taylor


Coaching: A New Support for Care Givers

It's no surprise that providing care for a family member is a full time job. This is especially so if caregivers provide daily care in addition to their already stressful jobs, whether at the office or at home. Even if direct care is not a regular occurrence, there is a backdrop of tasks that can overwhelm even the most conscientious.

A variety of scenarios may arise that challenge caregivers. The homemaker might have just quit and someone needs to be with mom, so you can go to work. Or, when you are at work, she calls repeatedly complaining that she is bored. Coming up with an activity schedule may be the hurdle you face. How do you figure out how to care for her, as her condition worsens, when quitting your job is not an option? What resources can you draw upon? How do you get supportfrom your family when you have historically been the one caring for your mom? Or how do you lessen the stress when family meetings bring out the differences among your siblings in how to best care for mom?

These are just a few of the common worries family care givers carry around, that puts added strain on their already taxed days and nights. It can be immobilizing. If caregivers do not get help, both they and the family members they are caring for can be at risk.

When too many important tasks are relegated to the "back-burner" and don't seem to ever get handled, the care provided a family member suffers. This is so very common and yet, so unnecessary!

Change, both rewarding and challenging, is to be expected. People who have taken on the care of a loved one need the structure to successfully meet these challenges, while at the same time, balancing their day-to-day lives.

Sometimes all we strive for is someone who can help us to prioritize tasks, create a structure to manage what has so far felt unmanageable and provide a way to ensure that as additional tasks arise, they can also be handled before becoming overwhelming and out of control.

Coaching can occur in one on one sessions, group sessions and most recently, is being used over the phone, called "virtual" coaching. This option, created by new phone technology accessible to all telephone users, has opened the door to the busiest of us who seek the convenience, privacy or simply cannot get out easily due to their caregiving responsibilities.

Life coaching is the perfect solution that combines the care giver's own agenda with a trained professional who will:

  • help clarify and prioritize tasks,
  • support the development of a personal action plan to facilitate accomplishment of these goals,
  • maintain accountability to the implementation of that plan, and
  • help develop strategies to maintain changes, so caregivers are freed to move on to the additional goals or projects with new-found energy.

Coaches, like those professional athletes use, focus on breakthrough improvements that produce results unattainable without an individually designed workout regimen. In this example, the athlete has a clear physical or skill strengthening goal, the need for a workout and schedule replete with exercises to meet the stated goals, and assurances through on-going coach support and encouragement, that the workout is executed, and revamped, as progress in strength or skill is gained.

Simply put, the family care giver, like the athlete, is similarly strengthened with the support and skill of a coach whose sole purpose is to help the caregiver accomplish the goal of being competent, compassionate and emotionally strong as they care for their aging or disabled loved one.


Sylvia Nissenboim is a trained coach, author and popular workshop leader. In practice for over 20 years, she serves as owner of LifeWork Transitions, a personal and professional coaching practice, in addition to operating 4 adult day programs for the American Red Cross in St. Louis, Missouri. She has been working with caregivers and in Adult Day Services since 1982. Ongoing Virtual caregiver support groups forming monthly. For further information please contact her at 314-989-9056 or by email, egozitree@aol.com


Due to the length of these great articles that's all we have space for in this issue. There's more great things waiting to be included in the next issue! If you have something you wish to contribute you may do so by sending it to Jamie@theribbon.com.

Hugs and Peace,

Jamie and Karen

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