A New Year of Caregiving

In another day it will be a new decade, a new year and time to review how your caregiving is going. Are things the same as a year ago? I doubt it, if you are caring for a family member with memory loss. Diseases of memory loss like Alzheimer's are usually progressive and constantly giving the caregiver new challenges. It may be time to see whether you need to learn new skills to address the changing challenges.
In early memory loss, you learned to tolerate the repeating of information or questions. You were aware that some skills were being lost. You grieved the losses to your way of relating to your family member; perhaps learned how to assume responsibilities he or she once had.
What are your challenges now? Is it adapting to loss of speech? Is it looking at whether it is time for more help, perhaps in the area of a day program? I hope you've located, joined and consistently participate in a support group.
When caring for someone with a chronic progressive illness like Alzheimer's, you must forever be adapting your life to the disease. Keep reading caregiving books and articles. Attend seminars by the Alzheimer's Association to keep up with new trends in care. It isn't as hard with the right information. You can enjoy your family member again; only in a different way.
We've recently added a new service to our list; one of activity planning. Without planned activity to fill the day, caregiving can be very tedious. We will be sharing some of our ideas from time to time. If you have activities that have worked for you, share them with us.

StilMee's Caregiving Collaborations

I guess I'm on a roll to write. I've been giving a lot of talks on Alzheimer management at home. I'm collaborating with 3 other companies to add value to our already good coaching service so that we can cover all the treatment possibilities. Lynn Lazarus Serper, a researcher in brain health, has a Serper Method of brain education to delay the progression of memory loss in persons diagnosed with dementia. I've seen people become engaged happily in their own treatment. It is social, fun, and educational. And it works.Go to www.serpermethod.com
Nancy Emerson Lombardo, another researcher in nutrition and brain health has a great service looking at eating brain healthy foods and adding supplements to augment the benefits. Her company is HealthCareInsights. I'm taking her supplements as is my husband and feeling rested, sleeping well, and having energy in good supply. She is at Look her up at www.healthcareinsights.net
There is another company we are working with;My Way Village of Quincy. We've been involved in a pilot program to learn how to adjust the content of their very successful Connected Living Now product to be Alzheimer friendly and easy for a family caregiver to use. Its goal is to engage the person with Alzheimer's in a fail-free, fun, interactive search into the past to evoke pleasant memories and keep the person connected to family, friends and community. We at StilMee are looking forward to offering this to our caregivers to spend quality time with their family member. I'll let you know when we launch this addition to our coaching services. To learn more about this treatment, go to www.mywayvillage.com
Coach Beverly

Value of being in research studies

I met with a gentleman interested in making it easier to engage people with early stage Alzheimer's in research. It is imperative to the successful completion of a study that people are willing to be in the study. He told me something I'd never thought of before; the cost of research goes up double if the study is unable to retain subjects, and many treatments for Alzheimer's never make it to the table due to lack of study subjects. As I mentioned in another blogspot, my husband and I are in the HOPE study at BU in Boston. I will take part in other research as I am fit as a subject.
What keeps persons in early stage Alzheimer's from participating. It is probably a combination of fear, denial, and not finding the time. But it is imperative we find answers to the Alzheimer dilemma.
As one who has seen the results of not being willing to look at the fact that one has a diagnosis of Alzheimer's, I can say that the journey is much harder for all concerned. Medical and non-medical treatments are available but one won't benefit from them if no one pursues these options.

Too long a time

Readers of Stilmee Blogspot,
It has been 3 months since I posted a blog entry. It has been a busy time planning on new services to offer caregivers. We have partnered with My Way Village to offer an inovative computer based program called Connected Living. It evokes long buried memories that bring joy back to the person with memory loss. I and other StilMee coaches have witnessed the effects of this program on residents of Rogerson House in Jamaica Plain, Boston. People come alive remembering events of their lives that brought them joy and contentment through the introduction of picture cues. One gentleman who looked very apathetic and sleepy came awake at the playing of a clip from Fiddler on the Roof. He sang heartilly the wedding song, then asked me if I'd dance. I did. He twirled me, smiling the whole time. He had been brought back to a joyous time from the past. How very lovely to see him come alive, feel the feeling of joy, and be a man again. I went home later that day elated that he had 'come alive' with music. StilMee is happy to partner with My Way Village to bring this to elders with memory loss and their caregivers. What a wonderful way to tap positive memories and write them down as cherished memoirs.

Coach Beverly

Care for the Caregiver

How many times have I said, "Taking care of you is the best way to take care of your family member with dementia." I don't say that just to be helpful; it is true. When a person who is a caregiver, perhaps a mother or dad working, concerned about family obligations and work obligations, it is easy for that person to just keep going without regard for themselves. I think of a woman I coached who I urged to see a doctor as she was losing weight with no reason. She attributed it to stress of caring for her husband who wouldn't let her out of his sight as he lived with Alzheimer's. Her intentions were good, but it cost her her life. She died of cancer; it had been ravaging her body as she neglected herself in deference to her husband. After she died, he declined rapidly and he's gone now too. It was a sad lesson for those who knew her and were caregivers themselves. Maybe some of them will listen to me now.
Coach Beverly

Alzheimer challenges survey

I am interested in gathering some information about what makes Alzheimer caregivers seek help in understanding the disease.
What are the behaviors that drive you to seek help?
What stage of the disease was your family member in when you sought help?
What stage of caregiving are/were you in?
What kind of information are/were you seeking?

Thanks for your participation in advance.

Gifts of Alzheimer's

True, Alzheimer's disease is a hard disease to handle and sadness is all part of the journey. Having been caregiver myself to 2 family members, I've experienced the angst and the joy of being allowed to share in that journey. I also am writing a book (my second) about my caregiving experience with my mother in law. I am calling it Confessions of an Alzheimer Coach for lack of a better title. It has been a 14 year learning experience with all of the mistakes we made along the way. I too think the book will help others to see that, even when one is a professional in the Alzheimer field, we make mistakes when the patient is our family.
I hope your book is more hopeful than you describe. People caring for a family member with Alzheimer's need hope. Not everyone will experience the experience like you or me. I fear setting them up to expect it to be a harrowing experience would be unkind. The caregiver needs education about the disease, how it manifests itself, and how to relate to the person now with the disease. I'd encourage you to purchase my book at my website. I'd like your comments on that. I wish you a lighter heart and a hope...there are blessings in it all.

Articles about Alzheimer's

If you'd like to read some of my columns in the South Shore Senior News, go to www.southshoresenior.com Click on my photo (Beverly Moore) and access the last 4 years of monthly column entries. The column is called Matters of the Mind. Also visit our websit www.StilMee.com.

The gifts of Alzheimer's

The following is a story from a special caregiver:
My husband, Vid and I left the neurologist's office in disbelief. Probable Alzheimer's was the diagnosis. My response...DENIAL! "I'm not ready to hear that." It was so difficult for me to say, "My husband has Alzheimer's." A diagnosis of depression, stroke, vascular dementia; anything but Alzheimer's was more acceptable.
Anger took over. I was furious with Vid. How could he have this terrible disease? What am I to do? I am not ready to be his caregiver.
I would cry everyday on my way to work. Dropping Vid at daycare was especially painful. He did not want to go. It was an emotional struggle for both of us. I had to be the 'bad guy' who coaxed him out of the car and into the day program. Due to Alzheimer's, his safety and daily structure were important as well as my piece of mind.
After years of fighting against the disease that has taken over our lives, I have found peace and so many rewards in my caregiving journey. Have I been alone on my journey? Absolutely not. There are so many wonderful people who have supported Vid and me; family, friends, professionals, support group leaders among them.
My nine year journey living with the knowledge that Alzheimer's has taken away the future that Vid and I had hoped for has brought me to a new and unexpected place of living in the moment. The inner peace I feel today sharing our precious time together, and the unconditional love I feel for my husband of forty-seven years are my rewards. I have been able to identify my purpose and make some sense out of my today.

Research Opportunities

Well, we had our evaluation as subjects of the BUAD Research called the HOPE study. The testers were very easy to work with and went slowly explaining what they were looking for. There was a variety of tests, examining spatial accuracy, memory and dexterity. I was a bit anxious going into the testing which is 2 1/2 hours long. We each had to rate several areas of cognition of the other in everyday life, like concentration, attention, use of language, way finding as well as mood regulation.
I would recommend getting into this study for anyone who would like to be a part of finding out what normal cognitive changes are and what are precursors of dementia. There is one appointment per year for 3-4 hours. We're glad we're part of it. And, if either of us shows decline in cognitive functioning, we will be ahead of the treatment game. Since both my in-laws have died with Alzheimer's disease, we are aware of the impact it has on family life.
Go to my website www.StilMee.com
Coach Beverly

Helping our elder parents

Thank you for your questions; important ones! Helping parents takes a coordinated effort of the rest of the family. Couples deny changes in their partners. It is painful to see a spouse lose skills, forget things, respond differently. Couples resist outside helpers, feeling they'd rather do it themselves for as long as they can, even if it is hard. Adult children often have to tread lightly, making subtle changes in the way they relate to the affected parent. It is a trick to give help without making the parent feel helpless. Point out the positive relating that the unaffected spouse is using. Comment on the healthy things they are doing.
A professional can assist the adult children to keep their parents feeling competent and respected while giving the help they need. A dementia coach can be particularly helpful when one parent has memory loss. Our coaches work with the family to meet the tough challenges that come with dementia.
Coach Beverly

Research Opportunities

My husband and I are joining the HOPE study at Boston University AD Research Center to be part of determining what cognitive changes are normal aging and which signal possible dementia. It is both exciting and a bit intimidating to join this study. It means we have a full neurological workup with memory tests, etc.
As a coach, I want to learn what this process is like so I can explain it better to my clients and feel the uncertainty as I engage in the testing. I will be writing more about this experience after 4/3 when we are initially tested. It calls for yearly visits in Boston to re-evaluate. I'll also be writing about it in my column in the South Shore Senior News and the Neponset Valley Senior News.

Caring Well

I'm giving a talk soon for families on how to get through the dementia journey well. The first thing a family needs is information. Questions like What is dementia? How do I understand what is happening to my family member? What do I need to learn to relate to him now that he has dementia? are what families ask. These are important questions. The more a caregiver knows about what is happening to their family member, the better understanding he will have of the changes in behavior.
What do families need to know? They need to understand each other's way of expressing their love for the person. Each family member has a different relationship with the person and grieves the loss of that person as he was. It is hard to change a pattern of relating that has been in place for many years. But, if each person learned a new way that keeps them in relationship with their family member, each would find it joyful.
People with dementia are still here. We just need to find them and stay in their world. It is the only way to love them now.
Coach Beverly

My mother in law is dying this evening. She is 99 and has had Alzheimer's for more then 14 years. She is fighting death just as she fought in life. It is sad to see the life go out of her. She expressed herself in music, in art, in cooking, entertaining, and telling everyone who would listen her ideas...that were always right! I'm writing a book about her and me struggling with this disease Alzheimer's. She taught me more than all the books on the subject. There is nothing like living it.
For a personal mystical peek into the Alzheimer mind, read Still Alice. Amazing book about a bright woman and her going through the stages of the disease. Get it; you won't be sorry.
Coach Beverly

It is always gratifying when someone with Alzheimer's or who suspects he or she has symptoms, attends one of my presentations. I think that we need to rid ourselves of the tendency to think of Alzheimer's as a death sentence. An early diagnosis can be very helpful in seeking treatment, both medical and non-medical in the early stages. There are medicines that improve functioning, there are brain stimulating exercises that delay progression of language deterioration, and engaging in these activities gives everyone hope and a sense of control.
Coach Beverly

Children & Alzheimer's

Children are, like us, initially afraid of what they don't understand. When their family member doesn't remember their name or behaves in unexpected ways, children may avoid him. Chaildren can be taught about memory loss through professional coaching in the safety of their home. When they understand why their grampa, for instance, is like he is, and especially how they can relate with him again, their acceptance will come.
There are wonderful books for children of all ages expalining memory loss. A wonderful color filled story, The Magic Tape Recorder by Joyce Simard is one of my favorites. The explains how the brain of the person with Alzheimer's is like a tape recorder that is filled up with all the events and knowledge gained in that person's life. The tape is full, so new information is hard to perhaps impossible to be recorded. Besides that, the tape is so full, it is crumbling and losing what is recorded backwards. I actually find this metaphor useful for professional audiences to understand memory loss progression from immediate to short term to long term memory. All of us understand forgetfulness, or memory lapse; few can really grasp what memory loss means.
I am reading Still Alice today, a book that vividly describes experiences of an early stage patient with Alzheimer's. Get the book; it is a gem! The author is Lisa Genova. It is sad, disturbingly real and a very good read.
Coach Beverly

This morning I attended a talk by Bob Stern, MD of the BU Alzheimer Research Center in Boston. There are so many neat research programs you can be involved in. They are numerous in number and different focuses as well. Some are for the person with Alzheimer's, some for the caregiver and some for healthy individuals.
Being involved in research is a way to 'take back the reins' from the disease. It is a way of giving to our future generation. The HOPE study evaluates memory and thinking abilities of older adults throughout their lives. I'm going to be in this study to identify risk factors and be eligible for other studies. To learn more email Stephanie Sikora or email her at sasikora@bu.edu. You can also learn more about all the studies @ www.bu.edu/alzresearch
Be a research participant. As I get more involved, I'll post my experiences for you to read about.
Coach Beverly

The Move to Assisted Living

I am beginning a new book about my adventures with my mother in law Betty's dementia. Reviewing the journal I've kept since her dementia was becoming evident, I realize how much I've learned from her and others I've coached. The goal is to preserve the person's dignity and to give them a sense of control. I failed to do that several times with her. I'd like to learn how others have done on this score. I hear from a caregiver in Florida who has developed a passion for preserving her mother in law's dignity and purpose. I give her lots of credit for the growth in her since I coached her a year or more ago. Good goin' Lori.
Coach Beverly