Archive for the ‘ Stories ’ 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

 

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

 

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

 

The Caregiver Diaries: Moving Home

Family caregiving does not end when an aging loved one moves into a senior community.  While the focus remains on the senior, it is the mix of tasks that changes as the family strives to make the transition a smooth one and to find a new sense of normalcy.  The post below comes from a family caregiver who, along with his siblings, exemplifies the spirit of teamwork in family caregiving. The challenges don’t disappear, but together, they can share the responsibilities and come up with a feasible plan to better care for their mother.

Thank you, Jim, for your contribution!

 

Home Sweet Home

 

 

 

 

 

 

 

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Moving Home 

In our case, after recognizing the time was right*, our latest recommendation that she [Mother] move closer to three of her children was met with an enthusiastic, “OK. I’m ready!”

 

The move occurred in quite a flurry of activity of defining housing needs, access to wanted amenities (churches, walking opportunities, proximity to family, etc.).   I had some familiarity with independent living facilities as my wife and I have been providing routine respite for our friend, whose mother transitioned from Florida to Austin some years ago.

 

Our move happened on a Saturday, ahead of schedule, and the facility was willing to allow this.  Once furnishings were moved in, our mother was brought to her apartment and introductions to people and facility, begun.  One of our siblings stayed overnight for several days, while other siblings tag-teamed by coming and going as we all learned our way and routines with our new community.

 

In the initial week, we participated with our mother at daily activities and getting to know other residents.  Management staff live on premises and are cordial and friendly with residents and visitors.  An events coordinator schedules activities to draw residents into common areas and to promote community.  As residents open up, many share their hobbies and interests at a monthly “Show and Tell.”  Such activities prompt residents into leading later demonstrations of various skills, including hobby and craft skills.

 

Certainly, making our mother’s situation as homey as possible was a priority – and an ongoing process.  We may or may not have made mis-steps with regard to situating our mother.  At the time she was enthused to move, she gave us carte blanche to make decisions for her, and to just get on with it.  Quite possibly, she was ill with an infection that eventually contributed to five weeks of very difficult emotional roller-coaster behaviors and mood swings – which made for much second-guessing and more research to help understand and deal with the ups and downs we all experienced day-to-day.

 

We’ve had about three-four weeks of good experiences with Mother, but still there has remained the nagging sense of waiting for the shoe to fall – again.  It did, this past weekend.  We’ve hit some familiar lows and repeated laminations of wanting to return home.

 

So it goes.

 

My wife reminds me that it took about a year with our friend, Margaret, to finally feel more at ease within her new community – feeling less distressed, and to dispel imaginings of being abandoned (by her family).  We are still experiencing and expecting these episodes to continue for a time.

 

This week will be about returning to visit with neurologist for evaluations and restoring confidence and peace to my mother’s current sensibilities, as well as our own.

Jim

 

* Over years of prodding and watching gradual social decline and of habits, disinterest in hobbies and external activities, a significant episode of mixed high and low behaviors occurred and appears to have motivated the move.  We’d make overtures to venture out to see prospective situations, which mother declined to do – saying “when I’m ready to.”  That time never occurred.  She seemed happy to let us take care of the details.

 

Every caregiving situation is different.  And yet, collaboration, focusing on the loved one’s care and comfort, and creating a care team make caregiving a more manageable experience.  Even the harder challenges are weathered better when surrounded by people who support the caregiver.

When the family caregiver is also a caree, the picture changes dramatically.  Richard Kreis shares his caregiving-caree story with us and provides some tips to help family caregivers.

Thank you, Richard, for contributing this post!

 

RICHARD KREIS

 

 

 

 

 

 

 

 

 

 

 

What is a caregiver and caree? I am. 

(10/04/14)

As a caregiver, I’m responsible for making sure my brother-in-law Robert gets his meals, transportation, inspiration, cleanup, clean laundry, medication, first aid, and everything he may need.  I also do all of mom’s shopping, confirm that medications are correct, all transportation and health checks for mom.  Why am I a caregiver?  Well, after Robert had several bouts of pneumonia over the past few years and seeing how he was cared for both in the hospital and in the skilled nursing facility (SNF) he was placed in, I would not want it any other way.  Before Robert was released, my wife Trish and I discussed it and decided that until we can no longer care for him physically, we can get him fed, cleaned, provide his medication, help with entertainment, etc. And until he has to be lifted from (A) to (B), it is best for now that he move in with us.  That was just about two years ago.

I don’t do caregiving to get anything out of it, especially money, land or any type of wealth, so it’s not about that at all.  It’s about doing what’s right.  My mother cared for and provided for us three boys for eighteen years and then again when I left the USAF.  She had a room for me and my brothers, and for two of them, even longer. When I left the Air Force and until I got on my feet (which was fast), she had a room for me, so I want to step up and be there for her now.  If the time ever comes, she knows that she will always have a room here with us.  Another reason I’m doing this is I know if it were mom, Trish would open our door in a heartbeat and she knows that Robert will always be welcome here no matter how bad it gets.

 

Morning and Night

 

 

 

 

 

 

 

 

 

 

 

The main thing I would like families and friends of caregivers to know is that, it’s not an easy job.  There are long hours, sometimes not the best of working conditions, very low pay if any at all and, depending on the carees and their condition, the caregiver may never get a thank you.  If you know a caregiver and you have a chance, give them a break, order them dinner in, give then an afternoon break, or offer to do some of the chores (mowing, hedge trimming, grocery shopping or drop off kids), anything.

As for suggestions to new caregivers, “You’re not alone!” Go online and research any and all terms relating to your caree’s illness, research “caregiving, care, etc.”  You will be surprised at the number of websites out there pertaining to this subject, many that are set up by other caregivers to offer help.  Currently, there is Trish, myself and his Easter Seals day program who are providing care for Robert.  Trish, my brothers and I provide care for mom, and I guess you could say that all them take care of me.  They provide support with shopping for mom, helping with tasks around her house, even take her to doctor appointments when possible.  On another note, they also get me out, just us boys going flying, shooting range, coffee, lunch and much more.  They’ve even paid for massages!

 

Pen and Paper

 

 

 

 

 

Over the past 21-1/2 years of my pain and the past seven years of mom’s and the time we’ve cared for Robert, the lessons I’ve learned are that, you cannot hold everything in, you need to open up to someone.  More than likely your number of friends has diminished, the amount of activities you are involved in is less.  You may be doing this for the right reasons but without that someone to open up to, things will build up.  Don’t let them explode!

Being a caregiver, you have to be healthy.  The reason is if you get sick, who do have to take care of your caree?   Keep track of everything, every medical appointment (take notes), x-rays, test results, medications, doctors and treatments offered because you never know when something will be needed down the road.  If the issue is an insurance claim, I guarantee that at some point, everything’s needed a second or even third time.  Being on both sides of the fence and under it, I’ve seen that a lot.  You may have been thrown into the caregiver position or you could have offered to be one to a family member, either way congratulate yourself for stepping into this wonderful, heart-string pulling, and ever changing role.  You are amazing!

 

Richard K.

www.PickYourPain.org

PickYourPain@att.net

 

 

Author’s Bio:

Richard is a Tri-Fecta caregiver: along with his wife, he cares for himself, with Chronic Back Pain, which he’s had for 21 years.  He cares for his brother in-law Robert, who lives with him and who has been dealing with Epilepsy his entire life.  He also advocates for his mother who has various cardiac related issues, severe hearing loss and other medical issues.  You can read about his experiences with chronic pain and how he deals with his mother’s and brother-in-law’s issues on PickYourPain.org or at Caregiving.com.  He is also involved in several of Caregiving.com’s support groups and chat rooms, he is co-host of an internet based radio show pertaining to caregiving. Richard is also a patient adviser, board member for Intake.me, which is working to improve the intake process at medical facilities.  Richard has three adult children who despite them having to deal with his medical issues, he says, “They have turned out better than I’d hoped for.”

                                                                                                                                                                                                       

Continuing with The Caregiver Diaries for Family Caregiver Awareness Month, our next guest post is from Bobbi Carducci.  She is The Imperfect Caregiver.

Bobbi sheds some light on what it took to care for her father-in-law, who lived with multiple health conditions, with devotion and determination.  Her book, Confessions of an Imperfect Caregiver, paints an honest picture of the physical and emotional demands that family caregivers face day in and day out.  It also makes clear the compassion and loving support that they freely provide.

Thank you, Bobbi, for contributing this post!

 

 

Bobbi Carducci at conference 2

 

 

 

 

 

 

 

 

 

 

 

by Bobbi Carducci, The Imperfect Caregiver

 

I am a caregiver. It’s part of who I am. I was the one who tended everyone’s skinned knees and elbows when we were kids running wild across blacktopped playgrounds. I gathered all my dolls and placed them in rows on my bed in a makeshift hospital ward when children in the neighborhood were coming down with measles. Family takes care of family is a deep-seated belief I was raised with. A belief my husband shares. When my mother-in-law passed away and my father-in-law, Rodger, needed care, my husband and I agreed immediately that he would come to live with us.

 

For seven years I was his primary caregiver. His illnesses included schizophrenia, Parkinson’s disease, dementia, C.O.P.D. (chronic obstructive pulmonary disease), Dysphagia (severe swallowing impairment), thyroid problems, and congestive heart failure. The paranoia associated with his mental illness made him suspicious of doctors and of me as his caregiver. Delusions and hearing voices complicated everything.

 

I called what I did creative problem solving on the run.  Imagine a life where, from early morning until long into the night, problems popped up with increasing frequency and devastating impact. I liken it to a nonstop game of lightning-speed whack-a-mole.

 

Our day started early. His first medications of the day had to be taken after a meal so breakfast was scheduled for 7:00AM. That meant it had to be ready by 6:45. Any later than that and he’d begin to stress and pace the floor moaning, “Something’s wrong. It don’t make sense.”

 

If the mail arrived late, the same thing happened. If the cable went out on the TV, he panicked. Rain was not good. A sunny day wouldn’t last and that meant it would rain soon.

 

I cooked pureed food for him daily to make sure he got tasty, nutritious meals free of additives. He was convinced his body wouldn’t digest certain foods and the list changed often. If he decided something didn’t taste right, he knew it had been tampered with.

 

What did I do as a family caregiver? I provided him a home where he was loved and his needs were paramount. I quit my job and spent 12-14 hours a day cooking special meals, administering his medications, driving him 40 miles each way to his many doctors. At first, we made the trip every three months. As his conditions evolved, it became weekly or more.  I sat at his bedside from early morning until well into the night whenever he was admitted to hospital to help feed him and bathe him and keep him from falling when he got out of bed against doctor’s orders. I faced down a neighboring sheriff’s deputy who threatened to arrest both of us the day Rodger ran to his home near us to beg for help, insisting I was poisoning him. I bought a baby monitor to oversee his safety from anywhere in the house. I woke several times a night to check on him. I became sleep deprived when the bed alarm would go off every few minutes night after night when the effects of sundowning made his anxiety and paranoia worse. I changed his soiled disposable undergarments and wiped his behind. I bathed him and wept with him for all he had lost. I loved him and I sometimes disliked him just as he loved and often disliked me as we did the best we could each day.

 

What did I do for him?  I did whatever it took. He was an adult with the needs and insights of a child and the cost to both of us was immeasurable, but he deserved no less from his family and I would do it again in a heartbeat.

 

I feel the time I spent with him was a gift. He was a remarkable man in his youth and, even after he became ill, he retained an inner spark that refused to give up.  When the moments of clarity came, it was an honor to witness them.

 

I want family and friends of caregivers to know that what caregivers do is much harder than you realize and your help is needed. A few hours a month can make a huge difference. Telling a caregiver to get enough rest and to eat right and take care of herself is not helping. Caregivers know they should do these things. Most often they can’t because their loved ones need constant supervision and no one is there to step in. Give the gift of time. Imagine rushing through a trip to the bathroom because each time you go your loved one knows you aren’t watching over him or her and does something dangerous like getting out of bed and falling or trying to dry used tissues in a hot light bulb. Be there on occasion to see for yourself what a full day is like for the caregiver and then do what you can to ease the stress.

 

Caregivers are not saints. We are people who need a break now and then.

 

Caregivers, you are not alone. There are millions of us speaking out for help and we are gaining attention in the media, in Congress, and with business owners. I believe things will improve and more help will be coming as more of our voices are heard. Reach out to caregiver support groups in your community or online.  When anyone asks how you are doing, please do not say, “I’m fine.”  Tell them the truth and say, “I’m doing the best I can but I need help.”

 

Some suggested responses when anyone asks how he or she can help:

Go to the store for me once a week.

Sit with Dad for an hour so I can take a shower.

Cook dinner for us once a month.

Sit with me for while and listen while I share my frustrations.

Let me know you trust my judgment and stop second guessing my decisions.

Hug me. Let me cry on your shoulder and then help me find something to laugh about.

 

 

 

 

 

 

 

 

 

 

 

 

About Bobbi Carducci

Bobbi Carducci is the author of the book, Confessions of an Imperfect Caregiver. Bobbi is also a caregiver blogger. Her blog, The Imperfect Caregiver, is written for women and men caring for loved ones at home. She also writes regularly for blogs on AgingCare.Com and The Caregiver Space.  She lives in Virginia with her husband, Michael. Bobbi is available to speak with caregiver groups, at no cost, in person in the metro Washington, D.C. area or via Skype or Google Hangouts nationwide.  For more information you may contact Bobbi directly via email at bcarducci@comcast.net

www.bobbicarducci.com

http://theimperfectcaregiver.com

Signed copies can be purchased by followers of The Imperfect Caregiver blog at a 20% discount by clicking on this link:http://www.bobbicarducci.com/discount.html

 

The Imperfect Caregiver

http://theimperfectcaregiver.com

 

Author, Confessions of an Imperfect Caregiver

www.bobbicarducci.com

 

Bobbi Carducci, Director

www.youngvoicesfoundation.org

Author, Storee Wryter Gets a Dog

 

Available on Amazon and Barnes and Noble

Signed copies available directly via www.storeewryter.com blog

 

Thank You!

 

 

 

 

 

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Thank you!  Merci!  Danke!  Gracias!  Obrigada!

to all Family Caregivers for giving so much of yourselves so that another may continue to live with dignity.

Whatever circumstances compelled you to take on this role, you gathered the necessary courage to be the voice for your loved one and to tend to his /her needs with kindness and conviction.  No matter that the future is unclear and that the path to reach it is equally blurred. The fervor within you moves you forward, one day at a time – endless though it may feel.  Weeks melt into months and years.  Tasks mark the hours like a solemn ritual…until an unforeseen event disturbs the cadence of the day.  Change is the only constant companion, for predictability is a fair-weather friend.

Stand proud, Family Caregivers!  You carry the frail and weary of the world.  While you bear the responsibility of caring for another human being on your shoulders, your quiet strength and compassion carry you along this journey.  Gather all who cross your path and offer them a place beside you.  Indeed, there is strength in unity!

This November, Family Caregiver Awareness Month, let us reach out to one another in order to make our caregiving story a rich and rewarding one.  Friends and family, please lend a hand.  Family Caregivers, ask for help, accept the help that is offered to you, use the caregiving resources in your community and online, and take care of yourselves.

Throughout November, we will feature The Caregiver Diaries: stories that will provide an inside look at family caregiving.  Please visit often.  You will be amazed!

 

Caregiving happens.  Just like that!  For millions of family caregivers, no warning, no training and no preparation come before the role of caregiver is assumed.

Ashley Hardway shares how she became a family caregiver for her mother in an instant.  Seeing someone who was once strong and self-sufficient change overnight into someone who is practically the complete opposite is disconcerting, to say the least…and heartbreaking.  Not only do family caregivers need to face and to deal with the medical condition at hand, but they must also deal with the emotional and psychological impact that deteriorating health have on both caregiver and caree.

Thank you, Ashley, for contributing your insights about taking on this very important role and about how you found the strength to carry on.  I know you are joined by millions of other family caregivers across the globe.

 

 

BLOG parents

 

 

 

 

 

 

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My Experiences as a New Caregiver

Almost a year ago, my mom was an extremely hard-working, never-sit-down-and-chat woman of age seventy-seven. You had to practically lasso and hog tie her to get her to stop working. Then we found out that she had a blocked carotid artery that needed to be cleaned out. Upon going for further tests and an angioplasty, doctors also found out that she needed a triple bypass.

 

She had no real symptoms at the time. What she went in for were headaches. She went to her cardiologist every six months because we have a family history of blockages. Nothing was detected. But when she kept having headaches, she got a referral and went in to see her neurologist. He did several tests, one of which was (finally) a CT scan.  While he found nothing wrong in her brain, he did detect the blocked artery!

 

Just the week before, mom was over at her sister’s house, who was seventy-two at the time. She had a tree that was overshadowing her driveway and she was afraid that someone could be hiding in wait for her as she came out of her house and walked toward the car. She lived alone and it was a valid concern, so off mom went with her chain saw in hand (that she had requested for Christmas one year) to cut down the tree. It was not a huge tree but it was not small either. She was successful. The reason I am sharing this with you is to show you just what kind of a woman my mom is. About six months before this, I found her up on the roof of our home trying to do some painting. She could not, for the life of her, understand why I was upset. After all, she had tied herself off with a rope so she would not fall! She did later admit to me that she might be getting too old for climbing on roofs because her legs and back were sore.

 

Mom has seldom in her life been sick. The only surgeries she had were a tonsillectomy in her twenties and a hysterectomy when she was forty-something. Now she was suffering with these headaches, which really were getting her down and keeping her from performing at her peak efficiency. Then we find out about the blockages and it was a game changer.

 

The surgeon’s suggestion was that she have the carotid artery done first and then wait a couple of weeks for the open heart. A couple of weeks? We asked why and he said it usually works out best that way. I was thinking that maybe it had something to do with putting it off too long or that he thought the blockages were severe enough to hurry up and get it done. Well, we went in for the first surgery and it was questionable at first whether mom was going to bounce back. Instead of two weeks, her recovery ended up taking more like four or five weeks. It really dampened her spirits.

 

Her cardiologist said that she had to have the bypass, it was mandatory. But when it came time to get her back for the surgery, she began to fall apart. She was so fearful that she was coming down with one illness after the other. One night she was convinced she had something seriously wrong with her back so I took her over to urgent care and it turned out to be a pulled muscle. This just was not the mom I knew. She previously never complained about pulled muscles because she was always doing something to push the envelope before this surgery. I really did not think we were going to make it to that surgery appointment. She was in full panic mode. But what was I to do? Just wait and see when the blockages were going cause a stroke or a heart attack? One of my siblings is deaf and the other lives in another state. They were coming for the surgery but they did not really understand what was going on with mom. None of us had ever seen her like this.

 

The day of the surgery, we got her to the hospital and we were sitting in the waiting area for them to call her back. When they came for her, she just sat there and she could not stand. I thought perhaps the anxiety had taken over and she was just weak. My aunt gave her the walker she brought, which had a seat that rolled. We sat her on it and as I was following the nurse and mom, she was dragging her feet. I said something about it to the nurse and all she said was, “Pick up your feet please.” I was running along behind with my daughter and mom started talking with very slurred speech and said, “I feel like I am talking funny.” I told the nurse, “There is something wrong!” They said, “Don’t worry, we will take care of her.” Ugh.

 

After I was allowed to go back and talk to her, she seemed fine. She had her I.V. in and was talking normally, but I knew something was not right. The nurse said, “Her blood pressure is fine and so is her EKG.” I was waiting for the surgeon to come and talk to us and before he could say anything, I asked him if the nurses told him what had happened when we brought her back. He said, “No, what?” When I told him, the look in his eyes could have set the world on fire! He canceled the surgery and was calling in the neurologist. By the grace of God, her brain was fine but she had experienced a mini stroke!

 

The surgery was rescheduled for two days later and I begged them to keep her in the hospital under their care because I was concerned and because I did not want her to go through all the stress of coming back up there again. The surgery took place and, this time, my mom turned into an even bigger stranger. My usually extremely loving, kind, and gentle mom was angry, extremely hurt and refused to get up and walk. She refused to look at the nurses and she was very angry at me when I tried to talk to her about it. I was frightened at the change in her. She was shutting herself off, she was weak.  To top it off, she had a urinary tract infection, which we did not know about, that caused her to keep wetting the bed. One of the night nurses did not handle the situation well and hurt her by putting in a catheter wrong! It was catastrophic for mom and for me. I had been staying with her and planned to continue. This went on for a solid week.

 

I am a praying individual. I always pray because I believe in the power of prayer and of my almighty God and His Son Jesus Christ. So naturally, I turned to Him and asked for His help in this situation with mom. She is normally a very strong Christian lady but this had really hit her hard.

 

The physical therapists were there to walk her but she refused. The nurses told us that she was getting fluid in her lungs. I was pleading with her to walk but she would not listen. So I prayed. That afternoon, the surgeon’s assistant came in to talk to mom about the fluid in her lungs. She was an individual about thirty-five or so and had a patient demeanor. I had been praying all day. She sat down beside mom and told her that she knew she was hurt and upset and in pain. She then went on to tell her that if she got pneumonia, she would be in even greater pain still and that she had to walk. She explained about gravity’s ability to pull the fluids out of our lungs and that walking would really help. She even opened her computer to show mom a picture of her lungs before surgery and what they had taken that morning to show her the cloudiness that was fluid.

 

I know it was the Lord at work because she got up and walked with the assistant! And later that day she walked with me. The very next morning they took x-rays again and her lungs were clear. She was still not responding well to the nurses or to me but the Lord was able to get through to her to keep her from getting pneumonia. I was so relieved and began praising God.

 

She had stopped eating in the hospital as well so they began giving her Ensure and she hated it. I was doing my best to get her to eat but nothing seemed to appeal to her. People who came to visit were trying to bring her things to eat thinking it was the hospital food. Finally, they brought in some high calories Boost and she said it was okay, she could drink it. That was all she could tolerate, three Boosts a day. This continued when we came home.

 

On top of not eating, she could not seem to get rid of the urinary tract infection. They had her on antibiotics in the hospital and sent us home with some as well. She was so very weak and her balance was way off so the insurance company got us a walker and a potty chair. She was urinating frequently and she had diarrhea and could not make it in time most days. She had gone from a very strong woman full of vitality to someone I did not know in such a short time.

 

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She had lost about twelve pounds in the hospital and was continuing to lose weight even on the Boost. The Boost had to be special-ordered online because instead of the three hundred-and-some calorie Boosts you get at the store, it was actually five hundred and thirty. I praised God for the Boost daily. But between not eating solid food and having constant diarrhea she lost thirty-five pounds in just a few months.

 

I was taking her to her primary doctor and he was treating her urinary tract infection. We then found that she had a bowel infection called C diff (Clostridium difficile) which is extremely hard to get rid of. He put her on an antibiotic for both and I thought we were okay. A few weeks later I went to her room to check on her: she was incoherent and I got panicky. After asking her a lot of questions which she did not answer, I decided to call an ambulance. She had a low grade fever but she really did not even know the date or her birthday even. After spending hours at the emergency room they finally admitted her. The infectious disease doctor was called in and the doctor on call was an Oncologist. They checked her blood to see if the infection had gotten into her blood but said that it took several days to get back. They started treating her with intravenous antibiotics but were not sure which, so it was sort of hit and miss. We were there a week again and I stayed with her. The diarrhea never stopped and the infection was not entirely gone when they released us. I was completely terrified to go back home with this now-shell-of-the-woman I grew up with and I had no medical training whatsoever.

 

The primary doctor wanted to see us within the week and when he checked her again, the infection was not gone. He finally decided it was time to send us to a specialist and he started with the urologist. After two visits with the urologist, he told us we had to get the bowel infection taken care of before he could help with the urinary tract infection. We had to ask for another referral and this took time. All the while she is not eating, she has very little balance, she is choking when she drinks anything, and she is no longer effectively communicating.

 

I have never in my life been a caregiver or in the medical field. I felt helpless but, by the grace of God, not hopeless because I trust in the God of hope.

 

Mom and I were in a strange place. I no longer knew what she was thinking; and she did not know what to tell me about how she felt. She had hardly ever been sick and I had never been a caregiver. Not only that, but being in a supplemental Medicare plan was like swimming through mud. We were assigned an advocate who I did turn to from time to time because the primary doctor was giving out referrals like they were gold. He did not want to part with them, which I am sure was due to the system somehow. I knew that no one could help us out of this situation but God, so I continued praying.

 

We did get another referral to a gastrointestinal doctor, someone we had not previously been to. The first visit was an immediate relief of sorts. He was kind and seemed interested. He even let us in on why she probably was choking on fluids, something which no other doctor could answer, for some reason. He said that since she had a mini stroke, her throat muscles are most likely damaged. They normally work in a synchronized way but when damaged (like by a stroke), it is like swallowing down the wrong pipe. Wow! I can not tell you how much this little bit of information helped my mind.

 

He was concerned with her lack of eating as well! This was one of my main concerns outside of the infections, of course. Oh, and by the way, the cardiologist said her heart and blood pressure and all were doing fine, and the surgeon said she was healing well. I forgot to mention that we took care of all that initially.

 

He wanted to do a endoscopy and, at first, my heart sank because I knew momma was not going to want to go back over to the hospital. She was completely opposed to any more hospital visits. Come to find out that this marvelous doctor had his own facilities right there in his office! Not to mention that we did not have to pay the large co-pay at the hospital, we only had to pay our co-pay and she could get the endoscopy right there! He had a wonderful nursing staff and when you walked through those doors, it was if you were stepping into the hospital operating room. He had an anesthesiologist working for him as well. I was impressed!

 

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We found out she only had a few small ulcers, probably from her aspirin regime; and so, she went off of those for a few weeks. No reason she would not be eating. But he had given me an idea by telling me about the swallowing problem. I am wondering now if maybe the part of the brain that does taste might have been affected by the mini stroke as well? Or perhaps that it was her inability to swallow without the possibility of choking that is causing her to be afraid and it is psychosomatic?

 

We next scheduled a colonoscopy, something else he does right there in his own little operating room! How exciting is that? Some of you may think I am being silly, but some of you caregivers out there know how exciting it is to get encouragement like this. She was found to have diverticulitis, which is pockets in the colon that hold onto stool and can sometimes cause infection. I was amazed that the treatment for this was a tablespoon of Metamucil fiber after dinner every night along with three teaspoons of Fage (a brand name) yogurt to put back the good bacteria. He, of course, added an antibiotic to that and an orange powder medicine. Within a few days, her diarrhea had stopped, finally! When mom was tested again, her C diff and urinary tract infections were gone. However, she is scheduled to test again in the next couple of months. He did not send us away and forget about us!

 

When I call his office for help, I actually get a call back from the doctor himself. That may not seem strange for some of you but we live in a large city and that has ceased to be the norm for doctors around here. I asked him what will happen if the C diff comes back. He said, “Then we will give her a fecal transplant.” As if this is something that I hear everyday. He explained that it is a new treatment that has been working very well. You take the stool of a family member or from stool bank (did you know those existed?) and transplant it into the infected colon. The good bacterium from the healthy stool fights the battle and normally wins, sending that C diff running. Those were not his exact words; I am paraphrasing just a bit. This gives us hope to someday soon be infection-free and to get on with the process of healing in other ways.

 

Since we have been going to this doctor and he has been so kind and helpful, mom has actually started eating food and walking more. I know that it is God answering my prayers through a doctor who takes just a little bit more care with people. I believe knowing that her stomach is fine, her colon is fine, and what her swallowing problem was have helped to ease her mind. Not to mention getting rid of the diarrhea and urination problem she has had for months and months. I am so thankful to God for answering my prayers and thankful that this doctor actually cares enough to go above and beyond to help his patients.

 

Being a caregiver is not easy. This is one of the hardest things I have ever done in my life. It is not just the sickness and complications either. The first hurdle I had to jump over was to not get irritated at my mom, who had always been so strong and full of life. I know that sounds awful to some people but when someone changes overnight from the one who takes care of everyone to someone so helpless, it can be daunting. The child/parent relationship completely turned around and it was very difficult for me to adjust. Many times this psychological aspect can be the hardest to overcome.

 

The greatest advantage I have is a relationship with my precious Father in Heaven and His Son Jesus. The other advantage is great love. My mother has loved me forever and I freely give this love back to her. When it gets too difficult for me, I know it is not too difficult for Him. And He has led me to a group of godly friends that understand and support me daily by encouraging me and lifting us up to the Lord.

 

About the author

Always curious, Ashley Hardway is constantly learning and is passionate about sharing what she learns with others. Based in Houston, Texas, she loves to help families grow stronger, help their environments and communities, and keep moving forward! Check out @NannyLady on Twitter to connect and find out more.