Archive for the ‘ Diseases & Conditions ’ Category

Asking for help is one of the hardest things to do for many family caregivers – and I’d venture to say for many people in general.  I’m not sure why this is the case when we are all in the same boat.  Everyone needs a hand with this or that now and then.  It is ok!

Willem O’Reilly, Alzheimer’s family caregiver for his wife, shares a story about how he learned this important lesson.  But please, don’t wait as long as he did!

Thank you for your insights, Willem!

QUESTIONS ANSWERS

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Need Help?  It’s There for the Asking

Last night I spoke on a panel of caregivers at the facility where Molly lives.

We had a list of questions that covered many fundamental issues that affect all caregivers for dementia patients.  They ranged from “How did you handle the diagnosis?” to “What has been most helpful to you as a caregiver? Most helpful to your loved one?”

Many of the responses sounded familiar.  For example, taking away the car keys when the Alzheimer’s patient can no longer drive safely is always challenging.  As one panel member related, even if the person has not driven in a long time it is dangerous to leave the keys where he might find them.  He might one day decide to drive to the store and wind up in the neighbor’s yard.

Some stories were more unique.  The wife of the other man on the panel was diagnosed with early onset Alzheimer’s in her fifties.  Her husband pretended that he was having memory problems in order to get her to a doctor for evaluation.  The doctor played along and examined both husband and wife together.  Randy’s strategy worked for a very difficult situation. 

One woman couldn’t answer the diagnosis question because she wasn’t involved in caring for her mother early on.  Her father took care of his wife at home for years until he himself became ill and passed away.  My fellow speaker had to take over and start learning herself what caregiving is all about.

I listened and told mine and Molly’s story.  I had planned ahead of time to speak mostly about self-care.  I wanted to emphasize strategies that had helped me cope.  One is meditation.  The teachers I learned from practice “insight meditation.”  In this style, one calms the mind by focusing on the breath.  Then one observes what comes up in the body and the mind. 

MEDITATION

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This proved to be a wonderful approach for me in dealing with the painful emotions of grieving.  Eventually, I got to the place where I recognized feelings as they arose.  “Oh, yes, here’s anger back again.”  “This is sadness; I’ve felt like this before.”  The great benefit of this practice for me was that I came to understand that the uncomfortable, unpleasant feelings come and go.  They don’t last forever: they arise and they cease. 

This, then, was to be my lecture topic for the evening.  Of course, it didn’t turn out the way I planned.  The format included multiple questions with responses from each of the five panel members to each question.  There wasn’t time or space for Professor O’Reilly to deliver a lecture on meditation, or any other topic.

NEED HELP?

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So, I focused my responses on a much simpler self-care issue:  asking for help. 

As the oldest of fourteen children, as an adoptive parent to three children from the third world, as a community college professor teaching freshmen students still living at home, and as a caregiver for Molly, I was well versed in the hero role.  I took care of everyone.  I was competent.  I was good in a crisis.  I was always the responsible adult in the room.  And, I did almost all of it on my own.

I never learned how important it was to ask for help until I was forced to do so.  For me, that was when I got cancer and had to have surgery while I was a full-time caregiver for Molly.  After the surgery, there were days when I couldn’t get out of bed.  I couldn’t take care of Molly.  I needed help, and the only way to get it was to ask for it.  I did ask, and people stepped forward willingly to assist me and Molly. 

My experience with caregiving and Alzheimer’s has taught many things, but two conclusions seem especially important.  We are stronger than we believe ourselves to be.  We are never alone. 

I have been helped by family, friends, neighbors, public servants, and complete strangers.  At first I was surprised by how willing people were to help me and Molly.  Later, I concluded that the vast majority of people are kind and generous.  Help is available on all sides. 

The trick is to learn to ask for it.  I learned in a pretty hard way, but I did learn.  It was one of the great lessons of my whole caregiving experience.

WHAT DO I DO NOW

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ABOUT THE AUTHOR

Willem O’Reilly is a freelance writer and a caregiver for his wife Molly, who has Alzheimer’s.   Willem has been a college professor, a grant writer, a real estate broker, a photographer, a diversity trainer, and a business consultant.  He and Molly raised three adopted children from the Philippines, who are all in their thirties now.  Willem’s anticipatory grief journal has become the basis for a forthcoming book What Do I Do Now? A Caregiver’s Journey with Alzheimer’s.

Willem O’Reilly’s book What Do I Do Now?  A Caregiver’s Journey with Alzheimer’s is now available on Amazon or by order at your bookstore.

Kevin O’Brien’s film, THE TRAIL, is an account of his father’s “journey into dementia” and serves as a stage on which the observer can see the varied sides of caregiving.  Every person faced with this insidious disease, whether as patient, family caregiver, relative or friend, is forced to make choices about how to deal with the changes and challenges that it brings.  Kevin illustrates how he and his family chose to face dementia and how each member found a way to move forward.

Thank you, Kevin, for sharing your story through this interview and through your upcoming film.  We wish you the best and look forward to seeing THE TRAIL and your future films!

 

KEVIN OBRIEN & FATHER, MICHAEL O'BRIEN

Photo:Connor O’Brien

 

Q: What prompted you to film in general and to create THE TRAIL in particular?

A: I needed to articulate the manifestation of my father’s dementia and the way in which it had affected our family. The film is not a documentary. Instead, the film replays key events in my father’s dementia during the course of a family hike. A fictional short film based on my life events allows me to condense many years of experience into the course of a day’s outing. Viewers will be presented with an abbreviated but not diluted look at what dementia is.

 

Q: Surely caregiving has affected your family & you.  How has it affected your relationship with your father, your mother and your brother?  Will your film illustrate these changes?

A: Dementia has debilitated my father, stripping him of the ability to provide me the affection, support, and guidance that he once did. My mother, brother, and I have had to unify to provide care for him and ourselves. This unification has reinforced our relationships. The Trail will visualize the ways that my father’s dementia forced us to become the givers of care instead of the recipients of it and how that brought us closer together.

 

Q: How has talking with other family caregivers and organizations affected your views of caregiving?  What surprising lessons have you learned?

A: What surprises me are the points of commonality that I identify between my own experience and the experiences of other caregivers. My father’s psychotic break was very unique and was focused on his specific paranoid delusions. However, I hear the same words he screamed in the stories that other caregivers have shared with me about their loved one’s psychotic break.

 

THE TRAIL: DAD

Photo:Connor O’Brien

 

Q: What roles do you see or would like to see family and friends playing in caregiving situations? How will THE TRAIL encourage family and friends to carry out those roles, given your experience and your conversations with other caregivers?

A: The Trail will conclude with the father’s two children beginning to carry him off the trail and across a seemingly endless expanse of mountains. Those images will communicate that the caregiving experience is a protracted one that is best navigated with support from friends or family.

 

Q: How do you and your brother take care of yourselves?  Your film can voice the difficulty in practicing self-care, but also provide some realistic options to do it.

A: My brother is my best friend. We practice self-care by expressing the respect and love that we feel towards one another on a daily basis. Once we were sibling rivals. An antagonistic relationship sustained by my intense jealousy of Connor. All of that had to fall away as my father’s illness progressed. Through open and honest communication, Connor and I have built a new brotherhood.

 

THE TRAIL: MOM AND DAD

Photo: Conner O’Brien

 

Q: Have you and your brother accepted help from relatives, from friends or from outside support?  If not, why not?  (These are some of the roadblocks that we must overcome in order to lighten the load of caregiving.)  Has the support that you’ve needed been available to you? How did you become aware of resources?

A: My mother, Sandra, serves as my father’s primary caregiver. We have divided the days of the weeks between the three of us, providing care in shifts. It is difficult for me to imagine providing care without the presence and support of my brother and mother. My extended family visits and provides monitory support. Both of which are appreciated.

 

Q: Where and when do you think is/are the ideal place(s) and time(s) to learn about caregiving resources and support?  Will THE TRAIL offer these suggestions?

A: The time to learn about caregiving resources and support is now but first audiences need to be introduced to what dementia is. Until my father’s diagnoses, I was ignorant of what dementia was. My hope is that, audiences will understand how dementia manifests and how it can affect a family, long before they are forced to educate themselves.

 

Q: What do you hope to tell the world & family caregivers through your film?

A: The world will be getting a nuanced look at exactly how dementia manifested within my father’s mind. Concurrently they will witness the evolution of my friendship with my brother Connor. Between those two arcs will also exist a testament to the good man my father was and the Greek levels of tragedy that his loss represents to me. Caregivers will be left with an empathetic story that utilizes the vastness of nature to articulate the massive scope of their undertaking.

 

THE TRAIL: DAD

Photo: Conner O’Brien

 

Q: Where and when do you plan / hope to show your film?  Will it be available for the general public to see?

A: The Trail will first be submitted to every applicable film festival with the intention of securing distribution. The goal is for the film to be seen by as many eyes as possible. When I have exhausted every effort to have the film distributed, I will situate the film on established internet channels to be freely shared.

 

Q: What are your plans for the future regarding film?

A: My wildest dream is to write, produce, and direct feature length films that tell stories as personal to me as the story told in The Trail. Closer to earth and the present, my brother and I are currently in the planning stages of a series of short documentaries focusing on different aspects and stages of our father’s life and illness.

 

Q: Anything else that you would like to say?

A: That caregivers should know that the sadness, frustration, and anger they feel is warranted. However, within the struggle that is caregiving, I have found purpose in life, a new respect for who my father was and who my mother is, and my best friend Connor.

 

 

 

BIO

Born in 1989, Kevin O’Brien enjoyed 20 years in a healthy home, under the wing of his parents Sandra and Michael O’Brien. In 2009, at the age of 61, his father was diagnosed with early onset frontotemporal lobe dementia. As the year passed, Michael’s cognition decreased, and the caregiving responsibilities Kevin shared with his brother, Connor O’Brien, and his mother, increased. Those years also saw Kevin graduated CSULB with a degree in Political Science, work four years at the public affairs firm GrassrootsLab, and leap into the entertainment industry with a contractual position at NBCUniversal. Kevin now spends his time looking for his next professional avenue and working to produce The Trail, a short film that seeks to chronicle the period of time between his father’s diagnosis and his 5150, a psychotic break that his father experienced, one that required his medication and sped his need for round-the-clock care.

CONTACT

Name: Kevin O’Brien
Phone: 562.256.5874

 

Every caregiving situation is unique.  Yet we, as family caregivers, have many emotions and circumstances in common.  Willem O’Reilly shares a moment from his caregiving journey that some of you may find hits close to home.  The details may be different, but the frustrations and fears may not.  Willem also shares how he copes with the tumultuous caregiving ride and manages to keep going.

Thank you, Willem, for your insights.

 

APPRECIATE

 

 

 

 

 

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How To Cope When Really Bad Things Happen      

by Willem O’Reilly

 

My wife Molly was diagnosed with Alzheimer’s in 2007.  The disease has progressed to where she is now in the late stage.  At one point she was much weakened by a series of strokes.  Strokes as a symptom of Alzheimer’s are relatively rare: her doctor said they occur in about 15% of Alzheimer’s cases.  

 

Today, Molly fell and hit her head on a doorframe splitting her forehead open.  The wound required eleven stitches.

 

There we were at the urgent care facility.  Molly was being prepped for the stitches to be done by the doctor.  The procedure required numbing the area, which meant sticking a large needle into Molly’s forehead multiple times.

 

I was sitting on the edge of the bed holding Molly’s hand.  The doctor asked if I would hold both of Molly’s hands out of the way while she administered the medication.

 

I had no idea.  Molly could not understand our telling her that we were helping her and that the “sting” was necessary.

 

She screamed in pain each time the needle went in.  She writhed and tried to escape.  I held her, and I wept.  She even called me by the pet name “Wuggie,” which I thought she had forgotten.   She wanted me to stop the pain.  I couldn’t.  It was terrible.

 

Later while the doctor stitched up the wound, Molly reacted to the needle, and the doctor gave her another needle of numbing fluid.  By then, I was numb myself.  I couldn’t believe this was happening.

 

At this low point, Sarah appeared.   This angel I had already met.  She is a leader of the Buddhist sangha I attend every other Tuesday.  So, I have sat with her in meditation dozens of times.  We have spoken occasionally, and Sarah participated in the sangha’s prayer for our son D.J. after he was stabbed.

 

Keep Calm

 

 

 

 

 

 

 

 

 

 

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And there she was, coming in to do Molly’s wound care and custom cut her bandages.  And to be present with me in a spiritual way that was calming and reassuring.

 

The energy in the room shifted.  I knew I was OK.  I knew Molly was OK.

 

This Sarah is tall and blonde and beautiful.  That is the outside.  She is, no doubt, even more beautiful inside.

 

There was an angel in one of my dreams who looked quite different and whom I nicknamed Abigail.  Perhaps if I dream of her again, I should change her name.

 

“Sarah” sounds right.

 

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What lessons does this event offer for me as a caregiver and for others who face really bad things happening to their loved ones?

 

I say to myself and to anyone who asks me “What have you learned from caregiving?”  “We are much stronger than we think.  And, we are never alone.”

 

 

How then do we recognize and cultivate our inner strength?  And our connections to people and to Spirit?

 

Use affirmations.  

 

I have a number of go to statements in tough situations:

 

“I can.  I have already done hundreds of things in my life that I thought I could not do.  I can’t is a choice.  I can make that choice today, but I know it is a choice.”

 

I can choose peace instead of this (This is from A Course in Miracles).

 

“Just for today I will try to live through this day only, and not tackle all my problems at once.  I can do something for twelve hours that would appall me if I felt that I had to keep it up for a lifetime” (from the Al-Anon program literature).

 

Meditation

 

 

 

 

 

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Use meditation for stress relief.

 

This is a variation on “Take a deep breath,” which anyone can do.  The simplest meditation technique is to take a number of deep breaths.  Going deeper into a calmer meditative state can be as simple as counting the breaths.  Jack Kornfield, one of America’s foremost meditation teachers, says that 5 minutes, or even 3 minutes, a day can make a difference.

 

Find a spiritual practice that works for you.

 

We can cultivate the trust that everything will work out for the best by focusing on the spiritual energy of the universe, whether we call our spiritual source God or Spirit or Light or Yahweh or Allah.   Pray and meditate in whatever style is best for you.

 

Join a spiritual community.

 

It is traditional to look for a church community for support and aid in difficult times.  In our world there are many options for a spiritual community, such as a Buddhist sangha that meditates together.   In a crisis, knowing that you are not alone in your panic or grief or fear is lifesaving.  You have support and people to go to.  You have someone to comfort you and help you.   People are remarkably kind and generous.  If you seek help, you will find it.

 

 

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About the author

Willem O’Reilly is a freelance writer and a caregiver for his wife Molly, who has Alzheimer’s.   Willem has been a college professor, a grant writer, a real estate broker, a photographer, a diversity trainer, and a business consultant.  He and Molly raised three adopted children from the Philippines, who are all in their thirties now.  Willem’s anticipatory grief journal has become the basis for a forthcoming book: What Do I Do Now? A Caregiver’s Journey with Alzheimer’s.

 

Charles Mattocks’ current film project Trial by Fire’s photograph of a burning hand says it all: the burning pain that CRPS / RSD imparts on those who have been diagnosed with this uncommon disease. The irony is that while this burning hand paints a vivid, if not disturbing, picture of pain, the reality is that this pain cannot be “seen” in the persons who live with it.  This makes it difficult for people – and doctors – to understand or to believe that it exists…That is, unless you catch a glimpse of the grimaces that escape when the intense pain becomes intolerable.  I have seen it: my husband was diagnosed with this infernal disease and has not had a pain-free minute in 7 years.

Trial by Fire tells the story of a man’s journey helping his mother to live with CRPS / RSD.  One of the goals Charles has is to increase awareness of this debilitating and crippling disease so that it can be successfully treated.

A heartfelt Thank You, Charles, for your grand efforts to voice the needs of the CRPS / RSD community and for your insights!

 

TRIAL BY FIRE

 

 

 

 

 

 

 

 

 

TRIAL BY FIRE

 

INTERVIEW

What prompted you to film in general and to create TRIAL BY FIRE in particular?

My mother was diagnosed with CRPS a few years ago and I wanted to do something to help her.  I recently lost my father out of the blue to cancer and I saw my mother going down hill.  I didn’t want to lose her as well. I also started to do my research on the condition and my heart was moved by the stories. I am an advocate for diabetes so this comes naturally when it comes to wanting to help people. I also have diabetes and I know the ups and downs. I have a strong faith in God and feel it’s my purpose to help people. I was also inspired by my late uncle, the reggae legend Bob Marley, to help others and seek to give back. We are here only a short time and we must leave something.

 

 

Surely caregiving has affected you and your family.  How has it affected you, your relationship with your mother and other relatives?  Will your film illustrate these changes?

Do the best I can with her: I go and cook for her and clean up the house; I help her soak her feet, that seems to give her some relief. I think she also needs someone to talk to and some comfort; when I bring my kids over it takes her mind off of the pain for a short time. She is older and dealing with this condition alone can be like a death sentence. Yes, the film will show some of these changes; it’s also a bit hard because she is older and somewhat stuck in her ways. So she’s not that easy to help at times.  I think she is now starting to open up to change. Like many, she is also stuck with what can be paid for by some insurance company and that’s not much. So she has done a few things that I felt were only going to make things worse and all about the money. Rest assured that’s what took place; it made things worse and cost a lot of money!

 

 

What caregiving challenges have other CRPS or Diabetes family caregivers mentioned and how have you overcome your challenges? Have you found caring for both diseases to be very different?  What surprising lessons have you learned?

Diabetes is another monster in itself, I deal with more type 2’s than type 1. The issue is that it’s a lifestyle condition and they don’t feel the conditions.  Unlike CRPS, you feel the pain and if you could just eat right to stop that type of pain I am sure everyone with the condition would eat Green grass if that’s what they had to do! Diabetes is not the same and the support I get is not the same.  In a short time, the people with CRPS have opened the doors for me. I have been able to get scores of emails and calls from all over the world so the immediate satisfaction makes this all worth it. I have learned many lessons: I have learned that I can’t give all of my soul for others but do what I can to make what impact I can. I stay up way too late and work too many hours trying to find a way to help the people and beat the machine of the big drug companies. But I can’t do that alone and at times I feel like the battle is of no use. But I won’t stop fighting and I won’t stop pushing.

 

 

What roles do you see or would like to see family and friends playing in caregiving situations?  How will TRIAL BY FIRE encourage family and friends to carry out those roles, given your experience and your conversations with other caregivers?

… and they love to do it.

I have seen from CRPS the role of family is key; I have seen parents taking care of their 50-year-old children. I wonder at times if something was to happen to me who I would have. My father just passed and my mother is sick, so I pray that I never have this condition. Family and strong friends are key, but family is the most as friends may have their own lives to live and you will only be left with a loving family to care for you. Diabetes is a bit different, as this slowly catches up to you. The way you manage diabetes is very different and that’s why I think when it comes to type 2, there is not much by way of sympathy because people feel that they have chosen to be this way.  In many cases, their lifestyle truly has. I think what we will show in the film is that being a solid unit is key and that all we have at the end of the day is the ones that gave us life or the ones that we grew up with.

 

Charles Mattocks, World Advocate for Diabetes,       Family Caregiver

 

How do you take care of yourself, especially now that you have been diagnosed with Diabetes?  Your film can voice the difficulty in practicing self-care, but also provide some realistic options to do it.

I have changed my life in so many ways!  I preach mental, emotional and, of course, physical change. I would like to think I live what I share and hope others follow my lead. I feel as if I can do it, you can do it!  If I can lose the weight and eat right, then you can also. As you know, there is no quick fix but life is too precious to not live all of it or live it sick by my own doing. CRPS is another dragon and I can only pray and hope that there is some solution or even some more funding for the people. We live in a country where we should not have to live in this type of pain due to not having insurance cover the cost of something that can help us. I hope we can march in Washington, D.C. and figure out a way to get some people help. When I think of the cost for some of the treatments but then think of what the medicines cost, these doctors are making a killing!  Some mark ups are like one thousand percent! I understand people need to make money but at the price of someone’s joys and hopes.

 

 

Have you accepted help from relatives, from friends or from outside support?  If not, why not?  (These are some of the roadblocks that we must overcome in order to lighten the load of caregiving.)  If you accepted help and support, how have you coordinated this help?  Has the support that you’ve needed been available to you? How did you become aware of resources, especially about reliable CRPS resources?

I had to get most of mine on-line or from my own thinking. Not saying that is the best way but I went back to what God gave us for my diet: I said water, fruit and veggies. I read a ton of stuff on-line and I was like none of this makes any sense, so I had no choice but to think of the simple plan. I didn’t have many resources, you would think with almost 400 million with diabetes there would be a lot more info. It makes you have to really wonder about the state of health. I still don’t have many places to send people who need help but billions are made and spent each day. I have found some great people in CRPS from reaching out. I was fortunate enough to meet an amazing lady named Nancy Cotterman and she has opened the doors for me to meet so many great people in CRPS. She has helped me meet doctors and those living with the condition, it has been amazing and has made this all worth it. I think with CRPS they need to know people like her that truly care and also suffer with the condition. I wish there were more people like her in diabetes and if there were, maybe we could help bring the numbers down. But I wish there was more help; I wish there were people that reached out to me.

 

 

Where and when do you think is/are the ideal place(s) and time(s) to learn about care-giving resources and support?  Will TRIAL BY FIRE offer these suggestions given the fact that CRPS is such an uncommon disease that most people have never heard of it?

We should learn about taking care of ourselves from a young age; if I would have known about diabetes from a younger age I would not have it now. I fail to understand why a course while in high school is not given on certain health conditions. I am not saying it has to be days of classes, but even a day or so of just overviews on certain diseases and conditions would do. That’s one reason I created my children’s book. I wanted to be able to enter into the schools and work with the parents and help educate [the children] from an early age. CRPS may not be one of those [diseases] that comes up at school, but we need the community to come together to get this message out so more people can truly understand. The movie will take the flow that the people who are in it bring to the film; I want it to be very generic and very organic. We will address certain things and I hope we can get as much as we can covered.  What we hope to do is open up the conversations. The great thing about this [CRPS] community is that it can get a voice.  Of course, I won’t please everyone and there will be ones that will say, “I wish he had covered this” or “Why is that not talked about?”  But at the end of the day, my goal was to get right what we are doing now, and that is talking about this condition and getting it out so others who are dealing with this can have a voice. I must say I am truly vested.  As I stated, I have met some amazing people and maybe it’s my curse of loving people, but I am so Happy to be part of this and my heart hurts with some of these stories.  Let’s see what the future holds.

 

 

What do you hope to tell medical professionals, the world & family caregivers through your film, and especially about CRPS?

I am hoping medical professionals will tell us something; I am hoping they will allow me to understand, and by me understanding, then those who see the film will also get the picture. I want to know why there is not more funding, why insurance companies don’t pay for the care, why this condition isn’t more well known, why does it seem like some are just trials for doctors to test new gadgets and tricks on. I am wondering why so many people go without being given the right diagnosis. So I am looking for the same answers that most are, I’m hoping that we understand what helps and what to stay away from. Hoping to encourage those who see no hope that there are groups and people to support them, and just praying that the film can inspire and bring the community closer together.

 

CHARLES MATTOCKS

 

 

 

 

 

 

 

Charles Mattocks’ The Budget-Friendly Fresh and Local Diabetes Cookbook

Where and when do you plan / hope to show your film?  Will it be available for the general public to see?

I will star in the film festival circuit. I feel we will do very well and win tons of awards around the country… and I hope the world! I will then use my contacts to get on the major shows that I appear on, such as Dr Oz, The Today Show, CNN and many more. Once we get it done and doing well we will get a ton of media coverage so I am not worried about that. My ultimate goal is to get CNN to pick it up and air it as some sort of special. We also have the option of on-line and many other venues. I am not shooting a full length feature because I am not sure we will have the funds, but we will shoot a great 30 to 35 minute piece that will make all proud!

 

 

What are your plans for the future regarding film and advocacy?

I hope to be embraced by the community like I am being now.  This does not have to be the last piece I do on CRPS. I am hoping to be able to tell many more stories and share the stories and air in other countries. I would love to be a face, I don’t have the condition but I can speak about my mother, the process of the film and the lives and stories that were touched. So I feel we have the making of something amazing!

 

 

Anything else that you would like to say about CRPS, Diabetes or caregiving?

We are the only ones that can make change! I don’t have the condition but I have been fighting and working nonstop day and night on this project. I need the support of the people, this is for the people and should be supported by the people. Let’s make a loud cry to the people and let them know that you have a voice and it will be heard!

 

 

 

MAKE A DONATION: TRIAL BY FIRE                 [Please click the title to make your donation via GoFundMe.com]

“’Trial By Fire’ is a documentary based on RSD/CRPS created by Celebrity Chef Charles Mattocks, as seen on CNN, Dr. Oz, The Today Show and many more mainstream media across the United States and around the world. Charles is also a best-selling author, World Diabetes Advocate and film-maker. Charles’ mother, who is the sister of the late legendary reggae legend Bob Marley, was diagnosed with RSD/CRPS about 4 years ago. Charles, who also recently lost his father from cancer, was moved to create Trial By Fire after seeing his father’s loss and wanting to help his mother who seemingly is at a point where he is in fear of losing two parents in a very short span.”

 

About Charles Mattocks 

Charles Mattocks

Charles Mattocks, The Poor Chef, World Advocate for Diabetes & Family Caregiver for mother with CRPS

 

Celebrity Chef & Worldwide Diabetes Advocate

“Each career move Celebrity Chef Charles Mattocks has made has been in keeping with his desire to touch lives in a positive way. Inspired by his uncle, the late reggae legend Bob Marley, Charles dared to dream big…His need to create meals that were tasty, nutritious, and affordable led to his career as “The Poor Chef”…Then came devastating news. Charles had type 2 diabetes…A tireless advocate for diabetics everywhere, Charles Mattocks, is determined to help stem the tide of this deadly disease…Charles has also teamed up with [Nancy Cotterman &] Dr. Hanna out of Clearwater, Florida, to work alongside him and his team to help the world understand what RSD/CRPS is and some of the many treatments that have changed the lives of many.”

 

 

It’s exciting to see how discussions about caregiving are gaining momentum! An effective vehicle to reach people across the nation and beyond is through film.  I had the good fortune of crossing paths with Inaya Yusuf, a film producer / director / editor whose film MINDING OUR OWN will be premiering at The Art of Brooklyn Film Festival on May 15, 2015.  Inaya was kind enough to answer my questions, which I now share with you below.

Thank you, Inaya, for bringing to light the realities of family caregiving and the manner in which families can adapt to a new set of standards and achievements. I look forward to seeing your films!

 

MINDING OUR OWN

 

 

 

 

 

 

 

 

 

 

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What prompted you to film in general and to create this film in particular?

I always enjoyed meeting and connecting with people. I think creating films are the best way to connect with others and share what you have learned from people you come across. It is a great medium to raise an issue and start a discussion around it. This film in particular, Minding Our Own, is a project close to heart. I was inspired by my grandparents who in a sense exposed me to the world of caregiving.

 

How has caregiving affected your family / you?

Witnessing my grandparents go through old age and the journey caregiving, I learned that it is not an easy task, however, it is quite rewarding. Their love for each other is what kept them going and by the time my grandmother took the role of caregiving, she knew to keep him close. I noticed that as time passes, she was unable to do it on her own, and that is when her children stepped in to help care for the caregiver as well. She was healthy, but she needed the support system.

 

MINDING OUR OWN

 

 

 

 

 

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Did working with the 2 families in your film affect your views about caregiving?  Did you learn something new in the process?

Working with these two families, I learned caregiving from two stages: caring for an aging parent and caring for a young adult in need of special care. I learned that caregiving is a cycle. A natural one. They introduced me to the idea of family and the importance of keeping everyone together. Both of them are fighters and they go through each step of the decision making process collectively, which I truly admire.

 

What roles do you see or would like to see family and friends playing in caregiving situations?  How do you see this happening, given your experience during the filming and your family’s?

It is hard to say because every family situation is different and every caregiving scenario is not identical to the other. This is to say that every family has a unique take on caregiving and only they could decide what is best. For those who decide to embark on the journey of caregiving, I admire their decision because I am sure that it will be a rewarding learning experience. I hope that they know that it is a collective journey, not an individual one. I would like them to have or find a support system and alternatively, for their friends and acquaintances to help them go through this. However, for those who decide to not do it, that is ok because caregiving is not for everyone, and I learned this first hand from the families that I have encountered. At the end of the day, it is about being honest with yourself and the person who needs the care.

 

During the filming process, what form of self-care was being used by the family caregivers?

I noticed that their method of self-care was made possible because they have a caregiving partner and support system that allows for them to keep active. They took breaks, even if it is just one or a couple of hours to unwind and do their own thing. Reading, knitting, gardening, doing art, driving, and many more. Humor was one thing that both families enjoyed and surrounded themselves with. Another form of self-care they shared is openness to others, be it family, friends, and strangers. Through talking, discussing, sharing and writing about their experiences, they are able to keep moving.

 

MINDING OUR OWN

 

 

 

 

 

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Were these families willing to accept help from relatives, from friends or from outside support?  If not, what reasons were given?  (These are some of the roadblocks that we must overcome in order to lighten the load of caregiving.)  Was the support that they needed available to them?

In their case, they were definitely willing to get support from relatives because they are open about it. Even when it is not relatives, they seek other help as well, through programs and other means such as at-home-nurse, etc. They were both working families who understand the importance of obtaining help from others when they need it. Even if it is just to watch the person they care for for a couple of hours. I think they understand how important partnership, time management and compromise is. Although it is difficult at times, I noticed that they are open to letting go of a task, if they are unable to do it–be it time constraints, not skilled or need a professional. At the same time, they also know that it can be seen as a mini-break.

 

What do you hope to tell the world & family caregivers through your film?

I want to tell families and caregivers that it is important to share your experience. You’re not the only one going through the process and there are others who are willing to share with you as well. I want people who are not caregivers to know what these individuals and families go through and to be there for them for support.

 

Where can your film be viewed after The Art of Brooklyn Film Festival?

After The Art of Brooklyn Film Festival, the film will be screening at Women’s International Film and Arts Festival in Miami as well as Hoboken International Film Festival.

 

What are your plans for the future regarding film?

I am seeking distribution for the film. Hopefully even getting an educational distribution as well. I think it will be great to find a platform where the film can continue to live. In the mean time, I will be at an Aging and Wellness Conference on June 2nd in Lynchburg, VA. There will be a workshop and an exhibition booth!

 

Anything else that you would like to say?

I just hope people are able to come see the film and share it with others!

 

 

About the filmmaker

Inaya Graciana Yusuf (Director/Producer/Editor) is an Indonesian-American filmmaker and founder of Slow Your Roll Films. She has worked on short documentaries to feature length projects such as Miriam, Amplify: The Story of Synesthetes, Dhalang, The Realization of Not Being, Right of Way and Minding Our Own. Most recently, she worked under David Tedeschi on Martin Scorsese’s documentary The 50 Year Argument. She also acted as additional camera to the upcoming documentary, Seed: The Untold Story by Taggart Siegel and Jon Betz. She was previously the production manager for STEREOTYPES, a web-based series directed by Rae, which aired on Pharell Williams’ channel, I AM OTHER. Inaya is currently working on her first documentary feature, The One & The Many.

 

Credits

MINDING OUR OWN

Slow Your Roll Films

45 minutes | USA | Color | English

Directed, Produced, and Edited by Inaya Graciana Yusuf

Cinematography by Inaya Graciana Yusuf

Additional Sound: Erik Spink

Sound Design and Mixing by Kyle Oppenheimer

Composer: Kyle Oppenheimer

 

Website and Social Media

Official film site: www.mindingourownfilm.com

Facebook: www.facebook.com/mindingourown

Twitter: www.twitter.com/mindingourown

Trailer (90 sec): https://vimeo.com/125047039

Short teaser/trailer (3 min): https://vimeo.com/118696932

 

Press Contact

Inaya Graciana Yusuf

mindingourownfilm@gmail.com

 

PARTNERS

 

 

 

 

 

 

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Family caregiving is a multi-faceted partnership.  All parties involved in the treatment and care of a person need to work together for the sake and benefit of the caree.  It goes without saying that family caregivers must take a proactive stance with all medical professionals in order to be fully informed about their caree’s condition and to be able to provide the required and optimal treatment.  Discussing health or behavioral changes, new symptoms and general observations with doctors and therapists helps the latter to stay updated and to fine tune treatments as needed.  Learning from the pharmacist or from the doctor how and when to take medications enhances the chance of obtaining the desired results and avoiding the negative ones.

However, just as important – and perhaps even more so – is the partnership between the family caregiver and the patient.  Without the cooperation of the caree, caregiving can become a much more difficult experience for everyone involved.

Our caree’s cooperation is essential in caregiving

When my husband Seth became ill with CRPS, he remained in charge of his own health.  However, we discussed treatments, medications, procedures, home modifications, diet, non-caregiving tasks, etc. before taking action.  We weighed pros and cons.  We looked for ways to overcome obstacles as mobility became increasingly limited.  As new symptoms appeared and biological changes occurred, we tried alternatives that would accommodate those changes.  (For instance, becoming nocturnal as a result of his biological clock going awry led to daytime sleep and nighttime wakefulness; his sense of taste “detecting” flavors that were not there led to eliminating from his diet foods that were no longer palatable.)

We agreed to look for ways to help Seth feel as comfortable as possible given the intense pain.  We agreed to give those alternatives a chance with an open mind.  Not every change worked, so we searched for other options and settled on practices with which we could both live.  I continue to carry out tasks in a manner that does not cause him additional pain and allows him to sleep.  (I cannot vacuum his carpeted room because the vibrations from the motor cause additional pain.  So I sweep and dust.  He no longer tolerates fish, seafood, garlic or certain grains – so our meals do not include them.)

 

Taking medications

 

 

 

 

 

 

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Seth has chosen to be an active participant in his treatment.  He does all he can for himself, takes his medications as his doctors ordered, and is always aware of the “work” that his disease has created for me.  His regard for my wellness is as important to him as his own. He offers ways to simplify my tasks, to help me stay organized (via technology), asks how I am doing and expresses his gratitude daily.  Our partnership in caregiving minimizes the stress and frustration that often surface in scenarios where the caree, for one reason or another, does not collaborate.  Perhaps the need for acceptance of the disease or condition precludes this collaboration.  Rather than fight it, my husband and I have accepted the fact that CRPS will be part of our world and choose to focus our energy on living.  Unless a cure is found during his lifetime, we remain ever hopeful.  Until then, we remain partners in caregiving!

 

How to encourage cooperation from your caree

Communicate – talk to each other about your day, your thoughts, your feelings…good and bad

Respect each other – treat each other as adults, with dignity and respect

Empower – remember that WE have choices and have the power to be proactive about our own health

Be positive – even the darkest moments have a gift for us; look for the tiniest glimmer of positivity and you will find it.  A lesson to learn for the future can be a source of strength.

Gratitude & Appreciation – acknowledge what you do have and be glad it hasn’t been taken away from you

Perspective – life is a challenge, puzzle, mystery, game of chance, adventure; caregiver & caree can work together on each hurdle.

 

Perspective

 

 

 

 

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Humor – at the lowest points, we have actually laughed because we never knew moments could be so ridiculously miserable.  From this, a deeper bond was formed from knowing we had each other on whom to lean.

Love – let love lead your actions: it turns chores into kindness!

Education – learn about the illness or condition and how it will affect the body, behavior, abilities

Empathy & Tolerance – try to imagine how you would feel and act if you had your caree’s condition / limitations / loss of independence.  Remember that he/she may experience symptoms or emotions that may be difficult to verbalize, and can be perceived as “behaving badly.” In actuality, they may be a sign that your caree is experiencing pain, discomfort, is fighting infection, anxiety, frustration, anger, grief…  Please discuss these with your caree’s doctor if they last more than a day or so.

Don’t force issue unless it’s urgent/poses danger – Consult with the doctor to see if the issue can wait to be addressed.  If it can, drop the subject and re-visit later issues with which your caree disagrees or is uncomfortable.  Keep in mind that as adults, carees have the right to follow doctors’ orders…or not.

Care, not cure –  As family caregivers, this is our role. We are not [always] miracle workers…but angels, always!

 

We approach the end of November, Family Caregiver Awareness Month, with a guest post from Trish Hughes Kreis.  The concept of “family caregiver” is, ironically, an unfamiliar title for many people.  It took me over 2 years to understand the term and to realize that that was what I had become.  Trish discusses this title and the role that comes with it, along with some words of wisdom that can help all family caregivers manage their important responsibilities.

Thank you, Trish, for contributing this post!

 

Richard, Robert & Trish

 

 

 

 

 

 

 

Trish, Robert & Richard

 

What is a Caregiver?

by Trish Hughes Kreis

 

For many years I did not realize I was a caregiver and have met many other caregivers who felt the same way.

 

I thought I wasn’t a caregiver because I didn’t care for Robert one hundred percent of the time. In my mind, I was not a caregiver because Robert could do many things on his own. I was not a caregiver because others who really, truly are caregivers have much more to do than what I do.

 

It was surprising to me to learn that these other “real caregivers” felt they were not caregivers either. They were just helping friends or family who needed help.

 

That’s when I realized: caregiving comes in all forms and, yes, we are all caregivers.

 

More importantly, caregiving is not a competition. It doesn’t matter the amount we do compared to someone else!

 

I am a caregiver for my brother Robert who has lived with uncontrolled epilepsy his entire life.  He was able to live independently with his companion for many years and our family checked on him and helped him with his finances.

 

However, six years ago, it became apparent that he was unable to safely live on his own. Robert’s uncontrolled seizures, brain surgeries, anti-epilepsy medications and head trauma have taken a toll on his cognitive and physical abilities and there has been a significant decline in the last few years, even since taking over his care.

 

I did not know what I was getting into when I first started caregiving for Robert. Robert lived ninety minutes away from me so at first, I just regularly called to check on him. It quickly progressed to taking him to doctor appointments while he still lived at home and making calls to see if he qualified for in-home care.  I hired a housekeeper to keep his and his companion’s house clean only to learn from the housekeeper that they subsisted on long-expired food.

 

During this time, Robert developed a life-threatening infection from the Deep Brain Stimulator that he had implanted (he was in a study through his neurologist to see if this would help control his seizures).  I moved him to a Skilled Nursing Facility near me. After a few stops in a Residential Care Facility for the Elderly (he was there under an exemption for those under 65 years of age), and a Board and Care home, Robert now lives with me and my husband.

 

When Robert moved to the SNF and I took over his care, I was quite overwhelmed.  Robert’s insurance is paid through Medicare and Medicaid and he receives Social Security benefits because of his disability.  While I muddled through the maze of these and other social programs, one of my first lessons was to be persistent and not give up.

 

Once I got past the overwhelmed stage, I realized there was information and resources I wanted to share with other caregivers so I started a blog (RobertsSister.com) about caring for Robert. There are millions of caregivers providing care to friends and family and there is no reason for each of us to go through this experience alone or to start learning everything from scratch.

 

My most important lessons I have learned so far are (in no particular order):

 

1.  Connect with others.  This site (CaregivingCafe.com) has resources and links to information for caregivers. Lynn Greenblatt was one of the first people to help me as a caregiver when I was trying to re-home a power wheelchair. I will not forget her kindness and responsiveness to my questions. CareGiving.com is another website that is has one of the most supportive community of caregivers I have found.  Denise Brown runs an educational and supportive website for caregivers to learn, share and connect.

 

2.  Do not give up.  We hear the word “no” a lot when advocating for our caree.  Do not let that be a deterrent.  Be creative when searching for answers – sometimes asking questions (or asking questions in a different way) can lead to “yes.”

 

3.  Educate yourself.  The more you know about your caree and their disease, disability or disorder, the more informed questions you will be able to ask which will lead to keeping your caree as healthy and happy as possible.

 

4.  Take care of yourself.  Easy for me to say! Caregivers always hear this and it can be annoying when it seems impossible to even take a five minute break. Even if a break or respite is not possible, go easy on yourself. Remind yourself that tomorrow will be a new day. Be kind to YOU. That is the best self-care you can give yourself.  Remember, we are all doing the best we can!

 

Caregiving is difficult (and some days seems impossible) but this experience has given me great satisfaction and allowed me opportunities to meet terrific, caring people.

 

I wouldn’t have it any other way.

 

About the author:

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates for her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible. Robert has lived with intractable epilepsy his entire life and was recently diagnosed with Cumulative Traumatic Encephalomyelopathy and Parkinsonism (both due to repeated concussions and a lifetime of uncontrolled seizures). Robert now lives with Trish and her husband, Richard.

 

Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a never-ending supply of Word Search puzzle books and a steady supply of Jeopardy and Family Feud shows recorded for Robert as the simple things are what make Robert truly happy.

 

Trish is the author of Forever a Caregiver and can be reached through her blog www.RobertsSister.com, Facebook (www.facebook.com/RobertsSister), or Twitter (@RobertsSister1).

 

This summer I returned home for the first time in 6 years and had the pleasure of meeting Gilly Cannon, who just happens to live near my old neighborhood!  She is a family caregiver for her husband, mother, blogger and all around nice person who shares her story of living with Trigeminal Neuralgia (TN).  I have heard that a bride marries not only her fiancé, but her fiancé’s family as well.  In the same manner, chronic illness such as TN also impacts people other than the patient.  It’s a diagnosis with which a family must learn to live – and to come together to support each other.

Thank you, Gilly, for contributing this insightful post!

 

PAIN

 

 

 

 

 

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Bringing Comfort

Normally when you agree to take on a job, you have researched it, examined the job description, negotiated hours and pay, have some pre-job training and /or bring your expertise to your new position.

 

Hopefully you also have colleagues, vacations, in-service training and a salary, which you hope reflects your years of experience, expertise and job performance and how much your employer wants you.

 

In August 2011, I found myself in a job with none of those things – the job of caregiving for my husband

 

On my husband’s birthday – August 17th 2011 he broke the news to me that his trigeminal neuralgia, an incredibly painful, rare facial nerve disease, had returned. He had, unusually for him, kept this from me for two weeks. This meant he had been suffering in silence with harsh, electric, shock-like pain on the left side of his face since the beginning of August.

 

Jonny says now, he was partly in denial and desperately hoping the pain would go away on its own. I had been wondering why this normally affable, unflappable, reliable guy had been quite the opposite – short-tempered, unfocused and unpredictable. When I finally asked him what on earth was going on – he murmured,

 

” My pain is back and it’s bad.”

 

I felt a shadow of dread wrap itself around my heart and a thousand things went through my head. But my first thoughts were practical. I had practice as a caregiver before. I knew what to do. I needed to get Jonny to double his meds and contact the neurologist, who had been taking care of him since he was first diagnosed, 3 years earlier. I helped him make a plan.

 

I had put my caregiving hat back on.

 

For 4 weeks the regularly increased medication chased but never caught up with the TN pain. The side effects by mid-September were beginning to ratchet up and TN was ahead of any battle plan we had. I sensed that the TN was going to force us on a different path and I needed to be with Jonny at each new twist and turn. I gave up my paying job and launched into the job of full time caregiver.

 

Suddenly we were plunged into a whole new world. If medication didn’t work – surgery was the only option. We had to find a neurosurgeon who specialized in treating TN. Now my job was search and rescue – search for the right path, surgeon and surgery and rescue Jonny from the deep dark TN pain hole he was tumbling down.

 

The first part was easier than the second. Thanks to the internet and our geographical location we had access to one of the large hospitals that had a trigeminal neuralgia center.

 

The rescue part was more challenging. The only thing that was certain was that the TN was in control and we were not. Watching Jonny’s pain increase and side effects take hold meant I was losing my soul mate, as I knew him. The advocating, problem solving, out-of-the-box positive thinker characteristics needed to become a part of my job description instead of his.

 

I became the researcher, caretaker, health decision maker, advocate, juggler and nurse.

 

I realized that it’s not that you have no time for yourself, it’s just that you do not know what time you have.

 

You cannot make a schedule for someone with a sudden illness, to work their downturns into your routine. So you try to adapt and fit in with them. As a caregiver you respond to each need, each pain, each new crisis as it happens and everything else: your own doctor’s appointments, hobbies, social plans, projects, reading, get put aside.

 

Although there were many things I gave up, here are some things I did and here is what I learned.

 

 

Find your strength and follow your gut

 

I felt I had no choice but to let much of my routine and needs take a back seat, particularly as our family is internationally flung and we had school age children. As expats we do not have family close by who could be a consistent presence and physical support for us all or provide respite for me. Jonny, therefore, was depending on me alone. I found strength in the depth of friendships I didn’t know I had, to keep moving forward and a strong gut that guided me when experience was sorely lacking.

 

If you have (school age) children-keep them informed and involved in plans, changes and treatment.

 

In mid-September 2011, Jonny’s pain from trigeminal neuralgia was beating any attempts to control it. The children and I watched helplessly as he tried to breathe through these attacks.

 

I tried to protect our kids from Jonny’s pain. But kids are smart. They sense the unsaid and worry about the unexplained. So clarity about where Jonny was up to became a priority and we tried to keep them in the loop with the fast changing landscape. They came often to visit at the hospital when Jonny was admitted for 2 weeks. They googled trigeminal neuralgia and watched  brain surgeries on You Tube. They felt empowered in being able to support Jonny and me within their abilities.

 

LotsaHelpingHands

 

 

 

 

 

 

 

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Use an online community site to keep everyone updated and a schedule so that they know how they can help with meals /groceries/playdates etc.

 

As Jonny’s health deteriorated, the concern of our family and friends all over the world, increased. I wanted to keep everyone updated. But the onus of knowing their email addresses and making sure everyone was included, was on me. I was exhausted and overwhelmed with loving texts, calls, emails and visits and could not respond to each and every one. I also knew that brain surgery that had been set for a month later, needed to be moved forward as quickly as possible. With all this in mind, two days before Jonny was admitted to hospital for pain that had spiraled out of control, dear friends came over and helped me set up a page at Lotsahelpinghands.

 

Here, I could post an update of Jonny’s progress and it was up to our friends to sign up to receive them. They could also leave messages for us and see a schedule of errands that we created for the months ahead. The pressure was off me and many of our wonderful communities around the world who wanted to keep in touch and help, now had a way of doing so.

 

Research, Research, Research

 

We found reliable information on hospital.

 

We read clinical studies from the USA and Japan.

 

We joined support groups online. There are many people on these sites with access to resources, treatments, their stories and a huge amount of support. It’s really good to know you are not alone, particularly if the illness you are dealing with is not well known or easy to pronounce. Certainly, it is also reassuring to interact with people who know firsthand what the pain, struggles, setbacks and successes are really like.

 

The reality is that although no two caregiving situations are alike, caregivers have many of the same struggles. And since often nothing seems to go according to plan, it’s useful to know that following your instincts and finding a way to accept help does mean you have found ways to help yourself as well as the person for whom you are caregiving.

 

Gilly Cannon

 

 

 

 

 

 

 

 

 

 

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About the author

“Gilly (pronounced Jilly) Cannon is an accomplished educator and counselor. Gilly received her degree in Mathematics and Education from the University of Cambridge in England and her certificate in counseling from The National Youth Agency in the UK…
During her educational career, Gilly has been a teacher, math coordinator, principal and founded and directed the learning support department at Carmel International School in Hong Kong.

Drawing on her professional and personal experiences and a British sense of humor, Gilly now focuses her posts on strategies that bring comfort to her readers in challenging times.  Her topics range from coping with serious illness and grief to dealing with family, parenting and educational difficulties. The blog has rapidly increased its readership and impact in the broader community and this has led Gilly to her current career as a writer.”

Blog:  Brainstorm

Twitter:  @bringingcomfort

 

Caregiver stress.  Family caregivers know it well.

Fawne Hansen – who describes herself as “a health coach specializing in stress-related conditions … focusing recently on the stress experienced by caregivers” – has graciously contributed this post.  Her comprehensive article offers a simple and concise definition of “caregiver” as well as sources and symptoms of stress, and tips for family caregivers, their families and carees to better deal with it.

Thank you, Fawne, for making the message clear: family caregivers must take care of themselves.

 

CAREGIVER STRESS: REMEMBERING TO TAKE CARE OF YOURSELF

by Fawne Hansen

[Republished with permission from the author.]

Caregivers are those that care for others because they either can’t care for themselves or need assistance to carry out everyday tasks. Caregivers are often related to the people they are caring for, and the person being cared for is frequently a cherished loved one.

The job of caregiving, while a worthwhile and rewarding endeavor, is fraught with stress and requires an incredible amount of patience and understanding.

Sometimes loved ones suffer from memory loss or have lost some physical ability. Sometimes they have medical issues that need to be tended to daily. They can require help with daily essentials such as cooking, cleaning, bathing, or using the toilet, while others may require the administration of medicine and transportation to and from the doctor. Some require round-the-clock care, giving little rest to their caretakers.

Unfortunately, stress among caregivers is extremely common. Caregivers often try to do everything by themselves, which eventually leaves them worn out and unable to fully attend to everything they are expected to do. Furthermore, ignoring the symptoms of stress can affect physical and mental health and lead to burnout, and make it impossible for the caregiver to continue caring for their loved one.

Here are the sections in this article:
Who Are Caregivers?
What Are The Sources Of Caregiver Stress?
The Symptoms Of Caregiver Stress
Tips For Overcoming Caregiver Stress
Putting It All Together

 

WHO ARE CAREGIVERS?

Caregivers are likely to be related to the person needing care. Over 65% of older people with long-term care needs, for example, rely exclusively on family and friends to provide that care. Women provide the majority of the care. There are many that work on an informal basis so accurate numbers are hard to come by, but caregivers are thought to be anywhere from 59 to 75% female. The average caregiver is about 46 years old, married, and works outside the home.

 

WHAT ARE THE SOURCES OF CAREGIVER STRESS?

Sources of caregiver stress include money worries and difficult decisions

SOURCES OF CAREGIVER STRESS INCLUDE MONEY WORRIES AND DIFFICULT DECISIONS

The reasons caregivers experience stress are as different as the caregivers themselves. Most experience several different stressors at the same time. However, some of the most common complaints are:

NO “OFF” TIME

Caregivers often get little time to themselves and few breaks. Every moment of their day is occupied in some kind of work. Some work full or part time in addition to their caregiving duties, and even their sleep time may be interrupted with the needs of the elderly or disabled person. While respite care is available, it is often economically out of reach for most caregivers, as well as far from where they live. Friends and family may help occasionally, but respite care is not regular or all that dependable.

BALANCING RELATIONSHIPS

Caregivers often have to divide their attention between the loved one, a spouse, children, children and friends. This is rarely accomplished without someone feeling left out and resentful. Married caregivers may find it difficult to find “alone time” with their partner, especially if the person being cared for lives with the couple. A simple movie night might be fraught with difficulty because no one wants to leave mom home alone, for example. All couples need that time they dedicate exclusively to their relationship. Furthermore, caregivers seldom have the time it takes to nurture friendships. Single people rarely find the time to date, and even if they could, few would understand the demands placed on the caregiver’s shoulders.

ROLE REVERSALS

When caring for a parent or older person, caregivers often relate that it’s difficult to reverse the child/parent dynamic. Adult children are reluctant to become their parent’s parent, and find it difficult to know where the line is between the safety and well-being of an aging parent and that parent’s right to make decisions for themselves. Furthermore, it may be difficult for the one being cared for to accept that someone has to help them go to the bathroom or assist them while bathing, a job they may have helped the caregiver do at one time.

VOLATILE PERSONALITIES

Sometimes the person being cared for bears little resemblance to the person the caregiver may have known in the past. It’s hard to reconcile that mom was once a gentle soul and is now demanding and harsh, or that a husband who was once quiet makes his dissatisfaction known often after a stroke. People who are growing old, who have dementia, who have had a stroke or have been involved in an accident may have a different personality than they once did.

ECONOMICS

There’s usually very little economic support for caregivers, and many are forced to provide their own money toward the caregiving efforts, particularly if the loved on is living in the same home as the caregiver. A recent study by AgingCare.com showed that 34% of caregivers are contributing $300 or more each month out of their own pocket for expenses related to care for their loved one. Furthermore, there is lost time from work, diminished earning ability, and reduced Social Security benefits when the caregiver retires. Seniors who get Social Security may experience reduced benefits due to free room and board. However, caregivers may be able to claim the loved one as a dependent if they provide more than 50% of their expenses for things such as food, housing, and medical supplies. Other startling statistics: 33% of women who are caregivers will decrease their work hours as a result of their caregiving activities, 29% pass up job promotions or training opportunities, 22% take a leave of absence, 20% switch from full time to part time employment, 16% quit their jobs entirely, and 13% retire early.

DIFFICULT DECISIONS

No one enjoys making some of the terrible, unthinkable decisions thrust upon caregivers from time to time. Sometimes the person being cared for has medical needs beyond the caregiver’s abilities, they may become unmanageable because they have become violent or abusive, or they may need end-of-life care. None of these situations are easy, and all require a great deal of thought and often a good measure of tears.

 

THE SYMPTOMS OF CAREGIVER STRESS

Depression is a common complaint of stressed-out caregivers

DEPRESSION IS A COMMON COMPLAINT OF STRESSED-OUT CAREGIVERS

Caregivers experience higher levels of mental and physical health problems than most people. While men and women tend to take on different roles in the caregiving process, both men and women suffer from much the same symptoms of stress.

DEPRESSION

Stress can bring on anything from a general feeling of temporary unhappiness at life, all the way to clinically diagnosable depression that requires treatment. It is one of the most common complaints among caregivers. Depression breaks the spirit and leaves caregivers unable to fulfill their responsibilities. The mental health impact is largely determined by the number of hours people are engaged in caregiving activities. One study, for example, found that middle-aged women who were engaged for 36 hours or more a week in the care of their spouse were 6 times more likely to suffer mental health consequences, and those engaged in caring for parents were twice as likely to suffer mental health consequences as a result of caregiving.

ANXIETY

Anxiety could arguably be a part of depression. It encompasses different emotions, however, which include feelings of worry, unease, nervousness and angst about what the future holds for both the caregiver and the one being cared for. It may even manifest itself as an inability to sleep. Caregivers may worry about their ability to adequately care for their loved ones. They may also worry about their own health, because they are likely to neglect their own needs. Taking care of someone else, especially those at the end of their lives, may cause caregivers to reflect on their own mortality. All of these symptoms are normal, yet caregivers should seek professional help, since constant anxiety can cause deeper and more serious problems if left untreated.

IRRITABILITY

When caregivers are overworked and exhausted, or feeling unappreciated, frustrated or powerless they may become moody, irritable, hostile or short-tempered, or just want to be left alone. However, it’s unlikely that the caregiver has the luxury of being left alone to regain their emotional strength. Constant irritability can be bad for the caregiver and the person being cared for, since caregiving requires a Herculean amount of patience. The caregiver may begin to experience physical problems such as headaches and poor digestion, and may begin to snap at others, including the loved one, other members of the family, doctors, or service providers.

DENIAL

Denial, an element in the process of grief, is also a sign of caregiver stress. The caregiver may deny how ill the individual being cared for actually is, or may believe they will get better. They may deny that more professional help is needed when they can no longer care for the loved one adequately.

SOCIAL WITHDRAWAL

Social withdrawal is also a sign of depression, but is a little easier to recognize than some of the other symptoms. Caregivers who once enjoyed social interaction may begin to avoid it. Invitations to family dinners or neighborhood barbeques may be left unanswered or refused, and even posts on social media like Facebook may diminish as the caregiver pulls more and more inside themselves. A number of factors may contribute to this: social interactions require effort, and the caregiver may simply be too exhausted; friends and family may stop visiting; and the person being cared for may behave unpredictably and make social interactions awkward.

HEALTH PROBLEMS

Researchers have found that 1 in 3 caregivers provide care for others while being in poor health themselves. 25% of female caregivers suffer health problems as a direct result of their caregiving, and they are twice as likely to suffer from coronary heart disease as their non-caregiving counterparts.

 

TIPS FOR OVERCOMING CAREGIVER STRESS

Building a support network is a great way to reduce caregiver stress

BUILDING A SUPPORT NETWORK IS A GREAT WAY TO REDUCE CAREGIVER STRESS

One of the biggest sources of stress is the inability to escape caregiving responsibilities. Although many caregivers attempt to go it alone, they can be better caregivers if they utilize all available support services. There are several resources available that may offer help, and caregivers should not feel reluctant to ask for it even if it seems uncomfortable at first.

If anyone, such as friends and family, has mentioned they will help the caregiver when needed, those names should be put on a list and utilized from time to time. Needs should be stated very specifically. “I need you to watch mom for 2 hours on Tuesday, what time slot is convenient for you?” is much more likely to get a positive response than “I need someone to come watch mom next week,” because the need and the time commitment is clearly defined.

Calling on fellow church members may yield results, but don’t discount people of other denominations. Call first on people of the church or group to which the loved one belongs, but certain church groups look for ways to show support to people of their community in general, believing it to be a reflection on God. Services can range from mowing the lawn to doing grocery shopping.

Home health care is another option. People will come into the home and provide whatever services the caregiver needs, such as cooking, light housekeeping, and even respite care. Although this kind of care usually costs money, costs may vary according to the services needed. There are even some free programs out there. Military personnel can sometimes enroll in programs such as the Exceptional Family Member Program, which offers free respite care for a special-needs family member. Some caregiver support groups provide services on a sliding fee scale.

Adult day care is also an option. Nationally, adult day care ranges from $40 to $100 per day, averaging about $61, according to the National Adult Day Services Association. Some Medicare or private insurance plans cover adult day care under certain circumstances. The one being cared for may also get a great benefit from this as well, since many day care centers provide social activities, meals, and health-related services.

For caregivers who are married and/or have children, stress develops when there doesn’t seem to be enough time or attention to give to everyone who seems to need it. The most effective way to get family buy-in is to seek some consensus. When everyone feels like they are being listened to, the caregiver will likely find more cooperation. Husbands and wives who cooperate form a much more effective support team for an aging parent or special-needs child. Also, remember that not every request from the person being cared for needs to be made the number one priority.

Exercise like yoga can release endorphins and reduce the effects of stress

EXERCISE LIKE YOGA CAN RELEASE ENDORPHINS AND REDUCE THE EFFECTS OF STRESS

It may seem counter intuitive to say that caregivers need to engage in exercise when they are taxed to the limit as it is and may suffer from exhaustion. However exercise releases endorphins that can help make caregivers feel better. This doesn’t mean joining a gym – caregivers have precious little time to engage in traveling back and forth – but they may be able to fit in a brisk 10-minute walk while the one being cared for is napping. Even when providing care, caregivers can sneak in a little exercise by gardening or following along with a short exercise video. Equipment such as treadmills or weights may allow the caregivers to get in some exercise, and maybe even encourage the ones being cared for to get some exercise too if they are physically able.

Along with getting a little exercise, caregivers should be sure they eat well, because this helps boost endurance and energy. They should try to avoid large, calorie-rich meals that leave them feeling sluggish and sleepy. Instead, eating many small meals of high protein foods along with fruits and vegetables is a better way to sustain energy throughout the day. Drinking plenty of water not only keeps the caregiver hydrated but can flush out toxins, helping the caregiver avoid illness.

If the caregiving job is a 24-hour, 7-days-a-week occupation, sleep may be difficult to come by, yet it is essential for the stamina and thinking ability needed when facing with the challenges of caregiving. Because someone being cared for may still need assistance during the night, such as help going to the bathroom or the administration of medication, a caregiver’s sleep may be interrupted. There are things caregivers can do to help them go to sleep quickly and feel more relaxed upon awakening.

Getting enough sleep is a great way to combat anxiety

GETTING ENOUGH SLEEP IS A GREAT WAY TO COMBAT ANXIETY

The first key to a good night’s sleep is creating at least a half hour of downtime before bed. The primary caregiver may be able to enlist other family members to take over then so the caregiver can unwind. Developing a sleep routine helps; going to bed and getting up at the same time everyday keeps everything on schedule. Be sure bedrooms are conducive to sleep – the room should be dark, cool, and quiet. Avoiding alcohol and caffeine encourages more restful sleep. Caregivers should not discount the power nap – if the one being cared for is napping, caregivers should consider napping at the same time.

It’s essential that caregivers care for their emotional, spiritual selves as well, since caring for a loved one requires a great deal of inner strength and can be emotionally taxing. Caregivers tend to ignore their own emotions (or worse, let them build up), which only adds to their feelings of frustration and stress. Some caregivers find relief by talking to a trusted friend, a counselor or a spiritual advisor. Others find peace by participating in religious activities and prayer. Those who aren’t religious may still find calm in meditation or breathing exercises designed to sooth the mind and spirit. Visualizing a calm, peaceful place is helpful to some caregivers.

Connecting with other people is extremely important. Most caregivers feel socially isolated and disconnected with the world as their tasks become all-consuming. If possible, the caregiver should arrange to get out for a day or even just an evening with friends. If that kind of connection isn’t possible, joining a support group may help because caregivers can connect with people who are in similar situations. Support groups don’t have to meet in person. There are online support groups where fellow caregivers can exchange information and offer positive and encouraging words. Social media sites may be helpful to caregivers who want to keep up with friends but don’t have the luxury of getting out very often.

Humor has an amazing ability to alleviate stress. Watching a funny movie, telling funny stories or reminiscing about happy times, reading the comics, or just finding humor in everyday ridiculousness actually changes brain chemistry. Many caregivers operate in “stress response,” a state where high levels of stress hormones enter the bloodstream. Laughter subdues the stress response, allowing for a more relaxed feeling. Long term benefits include increased immunity to illness, pain relief, and better ability to cope with the demands at hand.

 

PUTTING IT ALL TOGETHER

While stressful, the job of caregiving has many rewards. Studies show that because of caregivers, many elderly or special-needs people would require institutionalization, either in a nursing home or special care facility. Because the person being cared for is usually home when there is a caregiver present, families have the opportunity to enjoy the loved one, to share family history, to renew bonds and to gain from their wisdom.

Rewards aside, caregiving is still a stressful and demanding job. Learning to mitigate the stress helps caregivers maintain the vigor, attitude and stamina required to take on this role. The demands of the job are unlikely to change, so utilizing stress-reduction techniques keeps the stress from becoming overwhelming and unmanageable.

Caregivers must learn that taking care of themselves allows them to take care of others, and by doing so they can continue to care for, love, learn from and enjoy the people in their charge.

 

THESE STATEMENTS HAVE NOT BEEN EVALUATED BY THE FDA. INFORMATION IS PRESENTED FOR EDUCATIONAL PURPOSES ONLY AND IS NOT INTENDED TO REPLACE THE ADVICE OF YOUR HEALTHCARE PROFESSIONAL. CONSULT YOUR DOCTOR OR HEALTH PROFESSIONAL BEFORE STARTING ANY TREATMENT. COPYRIGHT © 2014

 

About the author

Fawne Hansen is an author and wellness coach specializing in the treatment of chronic stress and adrenal fatigue. You can contact her through http://adrenalfatiguesolution.com.

 

September is Prostate Cancer Awareness month.

In an effort to spread awareness of prostate cancer as well as resources and support for prostate cancer patients and family caregivers, I have highlighted some key points from Us TOO International.

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Us TOO International is a non-profit organization whose mission is to help men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.”

Furthermore, “Us TOO International Prostate Cancer Education & Support Network is a … prostate cancer education and support network of 325 support group chapters worldwide, providing men and their families with free information, materials and peer-to-peer support so they can make informed choices on detection, treatment options and coping with ongoing survivorship. The organization was founded in 1990 by five men who had been treated for prostate cancer.”

 

According to UsTOO International [ustoo.org], “prostate cancer is the second leading cause of cancer death in the United States.” [Overview & Statistics]  Yet many families are unfamiliar with this disease, which usually begins to show serious symptoms once it is in its advanced stages.  In addition, some of prostate cancer’s symptoms mirror those of other diseases, so it is not always correctly diagnosed early.  This is when education about this illness proves beneficial, not only to men, but to their families as well.  Cancer of any sort touches far more individuals than the patient alone.

 

The signs and symptoms of prostate cancer may include [from Us TOO]:

  • Pelvic pain
  • Frequent need for urination 
  • Difficult or painful urination 
  • Blood in the urine 
  • Painful ejaculation 
  • Loss of appetite and weight 
  • Bone pain

 

Because certain groups of people are more prone to getting prostate cancer, knowing what the risks are and discussing them with the doctor can improve the chances of early detection and early treatment.

Risk Factors for Prostate Cancer

*  African-American men get prostate cancer about 60% more than white males & have double the mortality.

*  If a man has a father or brother with prostate cancer, his chances of getting the disease are 2 times greater.

*  Men over 45 have an increased risk, although prostate cancer is found mostly in men aged 55 or older.  The average age of diagnosis is 70.

*  Obesity increases a man’s chance of dying from prostate cancer by about 1/3.

*  1 in 6 men is at a lifetime risk of getting prostate cancer.

*  High-fat diets may increase the chances of getting prostate cancer.

*  Prostate cancer is the #1 cancer diagnosis in US men today.

 

As a family caregiver for a man with prostate cancer, it is necessary to be proactive.  Us TOO International recommends:

*  Learn about the disease and its treatments

*  “Be there” for your caree, be a good listener, be understanding

*  Be your loved one’s advocate:

—  accompany him to his doctor’s visits (if he agrees)

—  ask questions about the illness, medications, side effects

—  help him adhere to his usual routine as much as possible, including activities, exercise and social life

—  encourage healthy eating and rest

—  adjust to the new lifestyle and treatments as prostate cancer runs its course

—  find support: for your loved one and for yourself

*  Take care of yourself!

 

It is important for both patient and family caregiver to face their situation “as is” so that they may focus on finding the appropriate solutions that will help them to move forward with their “new normal.”  Adjusting to a new lifestyle involves being receptive to changes, accepting them and taking advantage of the resources that organizations like Us TOO International provide.

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Wearever, maker of washable incontinence underwear, has partnered with Us TOO International to raise awareness of prostate cancer during September.  Details of how you can help to raise funds so that Us TOO can further support its community of people living with prostate cancer follow.

 

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Support Us TOO International with Wearever Purchases this September, Prostate Cancer Awareness Month!

A portion of proceeds from select sales of Wearever undergarments will benefit prostate cancer nonprofit Us TOO International this September. Wearever is partnering with Us TOO International to raise               money in support of prostate cancer awareness, education and support networks for patients and their families.

Throughout the month of September, 10 percent of proceeds from the Wearever men’s underwear line will be donated back to Us TOO International. This includes all sizes, styles, colors and purchases in singles, three-packs and six-packs from the Wearever Men’s Incontinence Underwear line. To learn more and purchase products to support Us TOO International, visit www.WeareverUS.com

www.Facebook.com/WeareverUS

www.Pinterest.com/WeareverUS

www.Twitter.com/WeareverOnline

 

 

(DISCLOSURE:  Wearever provided me with a garment for review.  The family caregiver and caree who used it were pleased with the product and would add it to his wardrobe.  Her husband found it comfortable and laundering was easy.  I am happy to share useful resources with family caregivers in order to make their tasks more manageable.)

Images: Us TOO   Wearever