Do You Know Me?

My thoughts are splintered as I think about friends and life experiences.  My husband took himself off the road for medical reasons a year and a half ago.  Unfortunately that cut our income in half.  I feel isolated as I try to figure out the money issues.  I know he is suffering and until a few months ago did not even have a diagnosis. – We found out that he has herniated disks in his lower lumbar region. 

I am always humbled when I read “Living in the Shadows of Alzheimer’s” http://sherizeee.blogspot.com.  She writes from the heart.  She uses words to paint vignettes of dark despair and love.  I remember those days.  I am so glad for the increase in resources and the internet support groups that now exist.  I wish I had reached out more when I was in the eye of the storm.

Yesterday I was at a technology class.  One of the ladies facilitating the class has been a colleague for many years.  She is a librarian at a different school.  I asked her if she had read my blogs?  She said yes my favorite is Windows 2 My Life.  “They were really funny, I was surprised.” Her comment made me laugh.

I smiled and said “You didn’t know I had a sense of humor.”

“No, I didn’t – but you do!”

How often we work and live with people yet never make deep connections.  People only see pieces of who we are.  A lot like the photos that show a small piece of a bigger picture.

Maybe that’s why I feel so fragmented.

Comforting Hands

I remember sitting beside my Mom, snuggling up close to her on the couch holding her hands.   She would look at me and smile.  How I miss those smiles and the time I had with her. When had she gone from strong to frail? She showed her love through her hands - cooking, touching, comforting - her hands were always busy.  I miss her and her loving hands.

I have memories of my mother's touch as a toddler.  I remember sitting on her bed looking at magazines.  She would reach over and pat my hand and go back to her own reading.  Other memories were of Mother rubbing my back just before I took a nap or went to sleep as a youngster.

Ms Nelson,  in The Power of  Touch - Fall 2010 edition of care ADvantage,  talks about different forms of touch therapy that is being developed for individuals who are frail and or suffer from dementia.  Science is also exploring the benefits of skilled touch therapy.  Touch therapy has been used to lessen agitated and aggressive behaviors.  Physically it helps with circulation, softens contracted muscles, relieves minor aches and pains and of course the age old reason for massage - to help relax and reduce stress.

When other forms of communication are challenging, physical touch can say so much.  As my mother aged and the AD progressed I relied more and more on physical touch to communicate my love. I would gently stroke her cheek or the back of her hands. Very light touches, feathery whispers.  I encouraged all Mom's caregivers to reassure her in this way.  We were always rewarded with a beautiful smile of love.  The sense of touch brought all of us comfort, as we continued to communicate. I was so very blessed to feel the warmth and love in my Mother's hands.

Touch is a universal language that most of us practice, but it is great to be validated.  It is encouraging to know that we are on the right track.  The article by Dawn Nelson - "The Power of Touch"  in care ADvantage  has lots of food for thought.  In her article she used a phrase that reached out and spoke to my heart - "intentional touch".   How frustrating and scary it must be to be experiencing communication challenges.  How reassuring intentional touch must be to those we love the most.

Living With Regrets

Today June 10, 2010 is the 3rd anniversary of my mother’s death. It is still so very difficult. In the beginning I had a very hard time moving past the pain and grief. I would go on - only to be ambushed by overwhelming waves of despair and loss. My tears turned to a deluge, flooding the present.

I felt my life was frozen in time. I was buried in my loss and pain, holding myself prisoner unable to free myself from the grief, consumed by regret.
Recently my friend, Carol, commented how lucky I was. She said, “Your mother was very loving and supportive. Even in her illness you knew she loved you. Some of us never know that kind of love from a parent.”

It is true, I am blessed. As I look back I have some wonderful memories.

I think part of the reason it took me so long to work through the pain was the regret. Mom was in a care facility the last 6 months of her life. She lost a lot of weight and became dehydrated. The hospital was unable to help. I regretted that when she needed me the most I had not been there. I had failed her.

I know that Alzheimer’s affects a person’s ability to swallow. My mother had a lot of dental problems that made chewing painful. I know intellectually that I did the best I could. Emotionally, I blame myself for being unable to take care of her. I know that the facility she was in did the best they could.

December 2006 I was hospitalized with Pancreatitis caused from gallbladder problems. I was in the hospital for 9 days. I did not have enough people to run 24 hour care while I recovered. So we had to move her to a private care facility. I wanted to bring Mom back home as soon as I recovered.

I returned to my teaching job in February. It was taking me much longer to recover than I had expected. Even when I returned to work I was unable to lift my mother by myself. I knew I was unable to care for her at home yet. All mother’s caregivers had other jobs by this point. Knowing this, I had planned to start hiring and training new caregivers as soon as school was out the end of May. Unfortunately, bringing Mom back home was not to be. She was hospitalized Saturday because of dehydration and died about a week later.

I still have regrets. There are days the tears cascade down my cheeks as I remember how tiny and vulnerable she was. I am learning to live with my regrets. Some days I just want to shout - "I want my Mom back!"

What I Learned Caring for My Mother

Today would have been my Mother's birthday. I have been reflecting on her life and my family. As with many reflections I can see and understand things better in hindsight than I did in the moment. Perhaps it is because I gained more tools from the actual experience for dealing with daily life.

Care-Giving has been a complex part of my life. It has been diverse and individual as there were people we interacted with. There is no right way nor is there an easy way to take care of someone experiencing Alzheimer's Disease. It is stressful for all concerned. My younger sister was a great strength to me as we dealt with how Alzheimer's affected our Mother.

I think that a crisis brings up old unfinished business between family members. It acts to bring things to the surface. Things we have been stuffing most of our life. Unfortunately most of us struggle with the resurfacing of painful memories and issues when we least know how to deal with them. We often don't know how to mend the cracked places. In some cases the fissures widen as our world rocks from the shocks of our personal earthquakes and only rubble remains when the aftershocks settle.

"An earthquake is caused by a sudden slip on a fault. Stresses in the earth's outer layer push the sides of the fault together. Stress builds up and the rocks slips suddenly, releasing energy in waves that travel through the rock to cause the shaking that we feel during an earthquake." Earthquake Facts


The stresses in our individual lives and the stresses as a family rub against each other until things open up releasing energy that rocks our world. In biology stress refers to the consequence of the failure of an organism – human or animal – to respond appropriately to emotional or physical threats, whether actual or imagined.

What Causes Earthquakes
"Parts of the San Andreas fault system adapt to this movement by constant "creep" resulting in many tiny shocks and a few moderate earth tremors. In other areas where creep is NOT constant, strain can build up for hundreds of years, producing great earthquakes when it finally releases."

Yesterday I was telling my husband about experiences with my older two sisters and how I viewed their treatment of our Mother. Those family connections had been broken and severed for many years. And with Mom's death became final.

As I look at lessons learned, I have tried to use this insight in a positive way with the extended family that is a part of my life now. Like others before me and others who will follow me, it is a work in progress.

What I learned from my Mother was no matter what, she loved all her children and she mourned that her relationship with some of her children was estranged. Naomi Feil said people with Alzheimer type dementia who are in the final stage of life, are trying to resolve unfinished issues in order to die in peace. In the workshop I attended she encouraged us to start at this moment to take care of any unfinished business in our own lives.

I have learned that sometimes our relationships require us to make a decision. Are we going to work on changing the dynamics of the relationship with the hope of making it better, or are we going to move on?

Favorite Kitchen Tools

Cutting up food for another person can sometimes take longer than the other person wants. Getting the pieces small enough, similar size and doing it consistently. Then I discovered a tool that is in most kitchens. The pizza cutter. I used the pizza cutter to cut pancakes, waffles, some vegetables, hamburger patties and jello jigglers.

I shared this tool with Mom's daily caregivers, they all loved it. My favorite pizza cutter was a promotional gift, it has a hand guard and is completely plastic and comes apart for washing.

I always tried to have colorful place mats for Mom's meals. She loved bright colors. Many of them had different textures that she enjoyed touching. It also helped with clean up.

The stick immersion blender is great for making smoothies and blending soups. When Mom lived with me I used it daily, in fact I had two of them.

I always made sure that Mom had snacks several times a day. jello jigglers, raisins, baby carrots cut up, pieces of cheese, summer sausage. I looked for protein finger foods.

Loving What Is

The title of Byron Katie’s book resonated with me on so many levels. When my mother was diagnosed with Alzheimer’s I was devastated. All of a sudden I was responsible for taking care of the one person I had leaned on all my life. She had always been my greatest supporter. Now I was responsible for Mother’s well being. Providing for her and if possible finding a way that she could still experience happiness and joy in her life. I was committed to caring for her as I grieved for the loss of the articulate expressive woman I knew.


I missed the woman she was, I missed being able to call her for advise. Throughout all the changes she kept her sense of humor and her loving spirit. She touched countless people. Strangers would stop us in the stores. Many would recount their own stories. Many just wanted to give her a hug.


I know when I was caring for Mom I was often functioning at survival mode. I did not know how to achieve more. Some days it was all I could do just to get through the day. It is during these times that you need to take extra care of yourself. It means finding a way to get the needed respite so that you can continue to care for your loved one. Finding time to sooth and restore your energy and refresh your soul isn’t just a luxury. It is critical for both your own well being and the well being of your loved one.


It is also during these vulnerable times that family dynamics usually take center stage to play out. Sometimes taking care of yourself and your loved one also means addressing the past and the unfinished business of family relationships. Families in crisis often need to work through painful family issues and memories. These memories and feelings frequently resurface during times of crisis.


We have stuffed our feelings and memories so long that we are surprised when they erupt in our face. We often are at a loss of how to resolve these issues of anger, resentment, feelings of rejection, competition and jealousy.


Byron Katie’s book “Loving What Is: Four Questions that Can Change Your Life” has some thoughtful suggestions for exploring personal issues and stories. There is never a convenient time to examine the feelings we have stuffed. If we leave these issues unresolved, family crisis’s often result in bigger rifts and greater pain for all involved.

Tumeric - For the Health of It

Turmeric is a spice commonly found in curry and is also what gives ball park mustard it's bright yellow color. So what does it have to do with care giving and Alzheimer's? Great question!

Turmeric is rich in phytochemicals that rival the best anti-inflammatory drugs when it comes to the benefits; it just lacks the toxic side effects. Turmeric is a rainforest herb rich in a phytonutrient called cucurmin.

There are two inflammatory enzyme pathways that affect cancer, heart disease, and arthritis - COX-2 and 5-LOX. Researchers believe that when these pathways become inflamed due to our diet, sedentary lifestyle, and stress they become contributing causes for heart disease, cancer and Alzheimer's.

Pharmaceutical companies have developed nonsteroidal anti-inflammatory drugs (NSAIDS) such as ibuprofen and potent drugs called COX-2 inhibitors. Two such drug examples are Vioxx and Celebrex, these are very effective drugs. Unfortunately, COX-2 inhibitors carry black box warnings because of possible danger. (Black box warning means sometimes it is fatal.)

There are over 2000 published studies in major medical journals on the effectiveness of turmeric's cancer fighting qualities.

The turmeric plant is a member of the ginger family. It is used as a spice and coloring agent. Not only is it a spice but it helps prevent spoilage in food. Turmeric is a powerful antioxidant.

According to the World Health Organizations article "Alzheimer's Disease: Of Emerging Importance" points out that India has a much lower rate of Alzheimer's Disease than the rate in the United States.

Research on turmeric sounds very interesting, so far the research suggests it works better as a preventative and with individuals in early stages. I know that I plan to continue to follow the research and to add more spice to my diet and life

References and Resources

Curry Spice Turmeric May Explain Low Occurrence of Alzheimer's in India http://www.montefin.com/diet/health/spices/curry-turmeric-curcumin-alzheimers.html


"What Everyday Kitchen Spice Can be Used for Therapy & Prevention" by Decker Weiss, NMO, FASA. of the Dr's Prescription for Healthy Living (Pg 20-22)Vol 13 #7.

Turmeric May Help Prevent Alzheimer's and Parkinson's Disease

Turmeric and Alzheimer's

http://www.raysahelian.com/turmeric.html

http://www.annalsofian.org/article.asp?issn=0972-2327;year=2008;volume=11;issue=1;spage=13;epage=19;aulast=Mishra

Turmeric and Alzheimer's Disease

Turmeric Shown to be Natural Remedy Against Alzheimer's http://www.naturalnews.com/026621_disease_turmeric_Alzheimers.html

Caregiving Journal

When I was taking care of my Mother, I developed a caregivers journal. I bought a 3 ring binder and a package of tabs. This book was designed to be grabbed in a medical emergency as well as a day to day record of mother's care. These were the sections I included.
1. Emergency Data - Phone Numbers - Drs, family, friends, caregivers, Programs, everybody I dealt with in regards to Moms well being. I also included a prepaid phone card in cases of emergency caregivers could reach my sister and other family members if I was not there.
2. Calendar with appointments and events.
3. Mom's Profile - Her story. What she liked to eat, stories she liked to hear, how to work with her, strategies to use. Things to be aware of mood shifts. What medication she was taking. Current photos - especially when she was wandering. Side effects to watch for. Music she liked to listen to. tips for safely getting her out of chairs, bathing her and later making sure she had snacks and lots of water to drink. Things she was still able to do and things she needed cue-ing with. I put enough current information, that if for some reason I was not there medical personnel and my sister Rita would have enough information to know what was going on.
4. Medical - Current medication, dosage prescribing physicians. Pill schedule. I included prescription and nutritional. Any reactions we had seen. I also included notarized medical permission forms for the people I had selected to be able to make decisions in an emergency. I made a copy of her medical insurance card.
5. Daily Record - This was kept by each caregiver including me: Mom's current moods, how well she ate, how much water she had drank, if she had been incontinent or constipated. Funny incidents, happy incidents, what they had done that day for activities. What was working what wasn't.
6. List of caregivers- names, numbers, times they preferred to work.
7. A copy of mother's living will. My attorney's name and the fact that my sister would have guardianship if something happened to me. (The original documents were kept with the attorney and were part of my will.) I wish I had put the location of the Power of Attorney I had in this journal. When I was hospitalized no one knew where it was. I had to tell Rita, my sister where it was. It was very fortunate that I was able to talk and eventually remembered where it might be. She needed the Power of Attorney because I was given narcotics during my hospitalization and legally could not make decisions.
I put this together so it was portable and had information that would assist others to make decisions in an emergency if I was unable to do so. It also helped keep everyone who was caring for mother in the loop. What happened before they got there. It helped me to know about mother's day when I came home from work.

Connection between Alzheimer's & Nitrates

"A new study by researchers at Rhode Island Hospital have found a substantial link between increased levels of nitrates in our environment and food, with increased deaths from diseases, including Alzheimer's, diabetes mellitus and Parkinson's. The study was published in the Journal of Alzheimer's Disease (Volume 17:3 July 2009)."

According to the article Researchers Find Possible Environmental Causes For Alzheimer's, Diabetes Researchers have found a parallel between the nitrates in our processed food, soil, ground water and fertilizer and deaths from Alzheimer's, Parkinson's, diabetes and other insulin-resistant diseases.

Oh my! The article said these diseases are pandemic.

In my mind this finding offers hope for some new leads in combating these diseases with medicine. But, maybe more importantly through changing our eating habits on a personal level. This article also shocked me as I took a mental inventory of what I have been eating. Lets just say if nitrates came in the form of a salt shaker, you wouldn't have tasted anything else.

Much of what I have been reading lately speaks to the hope that a diet similar to that eaten in the Mediterranean may be optimal for our health. That is proving quite a challenge for me as I am addicted to so many processed foods.

The second research findings that caught my eye was the connection that these diseases are insulin-resistant. In other articles I have read they have drawn a connection between belly fat as an increased risk factor for developing Alzheimer's. I have had a weight problem most of my life. Recent findings on that front also recommend a Mediterranean diet for achieving weight loss and a healthier lifestyle. It scares me that there is a connection between my belly fat and a greater risk of developing Alzheimer's.

Tools for the Care Givers Toolbox

One of the resources that I love is the free quarterly magazine care ADvantage. I still subscribe to it to keep up on Alzheimers and to marvel at what other people have accomplished. It is a free publication of the Alzheimer's Foundation of America.

When I first started caring for my mother I met a young woman in my National Guard unit who told me about "Validation Therapy" that was developed by Naomi Feil. Shortly after that I had the privilege to attend a AD conference where Naomi was the featured presenter. What an awesome experience. It truly helped me begin to fill my caregiver's toolbox.

I was pleased to learn that the website fore "care Advantage" has archived copies of past articles on Validation Therapy. The Fall 2008 edition has the article "The Validation Method at Work". I hope this resource becomes as valuable to you as it is to me.