Archive for the ‘ Inspiration ’ 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

 

I had the good fortune of meeting former family caregiver Margaret Sheehan quite serendipitously. She happened to attend a Caregiver Workshop at AGE of Central Texas in Austin and left a copy of her new book with Rob Faubion, Marketing and Outreach Manager.  He was nice enough (and clever enough to see a great opportunity to bring a bit of inspiration and support to the family caregivers in Caregiving Cafe’s support group) to tell me about her book.  I contacted Margaret and we met to discuss her caregiving experience, along with her sister Helen and her husband John.  All 3 had worked together to support Margaret’s and Helen’s parents – a lovely symphony of efforts that would be ideal to see in every family.

Thank you, Margaret, for sharing your insights with us.  I hope family caregivers put her tips to good use, as they will help to make the caregiving path more bearable. She is living proof that they worked!

For caregiving support, information, resources and caregiver workshops in the greater Austin area, please contact AGE of Central Texas.

 

HOW HARD COULD IT BE - MARGARET SHEEHAN

 

 

 

 

 

 

 

 

 

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How Hard Could It Be?  A Caregiver’s Story           by Margaret Sheehan

 

Your story – how did caregiving begin?  How long did you do it?  What conditions were you managing?

PART 1:  Caregiving began with a medical emergency, so there was no advance preparation or training.  Mom had a 50/50 chance of surviving serious complications from a standard surgical procedure to remove a benign brain tumor from behind the base of her nose.  Inevitable swelling of the brain made the doctor question whether she would survive or be herself after recovery.  No family members lived close to my parents at their retirement home.  I took a plane to be with Dad and spent six weeks helping him with driving, paperwork, shopping, emotional support and providing updates to family.

In addition, I buffered Mom’s experience in the hospital.  After all the tubes had been removed Mom still needed help with eating, staying oriented to the present and minimizing her concerns about Dad.  After my sister was able to stay longer with our parents I returned home.  My sister stayed another six weeks helping them transition from hospital care to home health care.

Medical personnel ultimately considered Mom a little miracle because she eventually recovered her speech, her personality, and her ability to walk.  Mom had no memory of my time with her.  After I returned home I wrote her a detailed letter telling her all about it.

PART 2:  Three years later I relocated close to my parents and orbited them like a planet.  For sixteen years I lived separately but near to them.  That caregiving experience gradually evolved from mutual care to an uneven role where my parents saw me as their primary caregiver responsible for increased decision-making and oversight of their care.  Then for four more years they lived with me and I became their full-time primary caregiver with help from aides and finally Hospice until their deaths at ages 93 and 95.

Dad suffered TIAs, small cumulative strokes that made speech difficult and left him with mild dementia and sundowner’s syndrome (at night he experienced another world and became more active).  Dad also had a catheter for about three years, a tendency toward constipation, age-related diabetes, failing eyesight, and minor difficulty walking due to childhood polio.

Mom was surprisingly healthy during those years, although in the past she’d had a mastectomy for breast cancer.  Her brain surgery only left her with a tendency to blurt out comments she might have self-screened before the procedure.  Overall she remained sweet, friendly and reserved.  She had bunion surgery, a minor procedure on her eyelids and two problems with her heart that made surgery impractical.

She often worked easy crossword puzzles until they became too difficult as her sight weakened.  But she was able to enjoy television – old-time shows that she never minded repeating.  She had normal age-related memory lapses such as increased difficulty identifying people on the Christmas mailing list.  As her memory diminished she grew quieter and smiled rather than partake in conversations around her.

Overall, I think they both were comfortable and happy.  They weren’t thrilled with aging but they did so with grace.  For example, at the appropriate time they each made the decision on their own to stop driving.

 

How did you approach this new role?

I jumped in, ready or not, here I come!  How hard could it be?  I intended to learn as I went.  At the beginning of the book I described a time when I accidentally ended up lying on the floor with Dad sitting, squatting on top of me, straddling me.  I felt that after we resolved that fiasco we could deal with anything, come what may.

 

What 3 things helped you cope/manage caregiving?

Trust in God, family, and good health.

 

BLOG WORKING TOGETHER COMMUNICATING

 

 

 

 

 

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What would you say to new and to existing caregivers now?

Take care of yourselves.  Make that a priority so you can be effective with what you are trying to do.  Seek the professional help that you need.  And communicate, communicate, communicate – with concerned others and with the person for whom you are caring.  Never presume that because you go through something together you each have the same understanding of what is happening.

 

How do you cope with loss during and after caregiving?

During caregiving I coped with loss through humor.  We laughed a lot.  It gave us the illusion of control, and acceptance about our lack of control.

After caregiving it was a comfort to me to have done all that I could.  Toward the end of my book I described taking my unfinished business after my parents’ deaths to my church’s sacrament of reconciliation.  I confessed my sense of fault over what I had done and what I had failed to do.  For my penance that blessed elderly visiting priest with an Irish brogue told me to return to my pew and to say six times, “All is forgiven.”  I hope to give a similar sense of peace to people dealing with caregiving decisions.

Now, I still talk to my parents.  I know they weren’t comfortable with their disabilities in their final years.  I’m grateful they were able to have the last sacrament.  I’m glad to think of them as having peace.

 

How did you deal with the changes in roles and relationships with your parents?

I just accepted the gradual changes that occurred.  I never challenged, deflected, or questioned this.  If they could have acted differently, I know they would have.

One day my Mom greeted me at their door as I was in the habit of visiting them after work.  She said, “Daddy threw up blood in his (TV) chair and is lying down in the bedroom.”  In the past Mom would have called the doctor rather than wait for me.  After that I knew I could not take for granted what they would do.

 

Did you seek and accept support from family, friends and community?  Did you have to wrestle with the idea that you “should” do things on your own?

Family did not live close, but when they visited I tried to point them to things that they could do.  This was good for all of us.  Caregivers have to let go of trying to do everything, especially when others want to be involved too.  But people who don’t live close usually arrive two steps behind no matter how well you’ve tried to communicate with them before their visit.  They have to catch themselves up and may need time to do so.  They will probably need your help to know what to do when they’re ready.

Also I asked one of my brothers to help me fund a regular housecleaner for our parents and he was glad to do so.  Later my parents attempted to live in an independent/assisted living facility.  It did not work out for them and I discussed that in my book — but that’s well worth considering.

 

How did your parents cope and manage their role as patient & caree?  What did you do to support them emotionally?

They worried about burdening me.  From the beginning we acknowledged that we were supporting each other.  I had just gone through a divorce when I moved near to them.

For many years I sought out activities that I enjoyed such as career studies, involvement in Community Theater, church choir and for awhile singing voice lessons.  I kept myself happy so they worried less about me.

To support them emotionally I just kept up with them and affirmed what they could and could not do.  I accepted them as they were.  I offered another pair of eyes and helped them to set boundaries.  For example, we gradually limited out-of-state travel to care for my father’s older sister. We helped settle her into a local nursing home.

 

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What prompted you to write a book and how did you get started?

I had started journaling during the years when Dad and I had precious conversations in the middle of the night due to his sundowner’s syndrome.  At the time I did not want to forget those talks.  After sharing those notes with family members, I expanded them into a book.

I wrote the book because I thought I could help others by talking about caregiving experiences that took me by surprise.  Many aspects of caregiving had taken me by surprise!  I thought maybe I could help others feel better prepared for caregiving than I had been.

For me personally, the book project also became a healthy avenue for closure.  It became a tribute to my parents.

 

What did you do to take care of yourself?

I got as much sleep as I could.  I let other family members help me as much as they were comfortable.  I laughed often.  I used myself as a barometer and checked anger to make sure it didn’t get out of hand.  When I found myself getting angry at family or my parents, it was a clue that I needed to make a change – usually to seek another level of professional help.

 

What do you think would be an effective vehicle to spread information about caregiving resources?

Your Caregiving Café is a wonderful service on the internet.  I am a dinosaur about this media, but it’s much needed.  I’m also impressed with the networking efforts of AGE of Central Texas.  To spread information about such resources, I suggest reaching out to parish nurses and ask them to inform people via their church bulletins.  In the Catholic Church, it might also be useful to talk to personnel at the diocesan level and ask how best to inform others.  There is a very good diocesan monthly newspaper.

 

Anything else you want to say to family caregivers or to family & friends?

I don’t believe I could say too many nice things about Hospice!  These professionals were wonderful to us in my parents’ final year.  It’s not giving up for a caregiver to involve Hospice when your doctor agrees it’s time.  And death doesn’t have to be absolutely imminent to receive excellent help.  Hospice care is another positive step toward making sure your loved ones are cared for in the best way possible.

Finally, do all you do with love.  That’s what gives you strength and endurance.  Love is what brings you a lasting memory with comfort and peace.

 

 

How Hard Could It Be? A Caregiver’s Story           Available on    Amazon  or  Barnes & Noble

About the author

Margaret Sheehan earned a master’s degree in theology from Loyola University, Chicago, Illinois.  She has worked in university and business contexts as a typist editor, and organizer.  For seven years Sheehan worked in Catholic parishes as director of religious education and facilitator of special events.

 

 

Change will do you good!

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“Changed for good.”

Wicked’s Elphaba (Idina Menzel) and Glinda (Kristin Chenoweth) sing about the positive impact that they have made in each other’s life.

“I do believe I have been changed for the better / …

Because I knew you / I have been changed… / For good.”

While we are influenced by people who make a significant impact in our life, change isn’t always the result of serendipitous encounters with certain people. Sometimes, it happens succinctly, without us giving it a second thought.  (Your favorite brand of coffee is sold out, so you buy a different one; or road work forces you to take a detour through an area you hadn’t explored before.)  We are comfortable with our current choices, so comfortable that we don’t even think about them and simply do them by rote.  (Ho Hum)  But isn’t it great to discover something new!  (Our brain thinks so!)

Is this how you feel about making changes?

 

 

 

 

 

 

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Sometimes, change is thrust upon us after a traumatic event – a car accident that leaves serious injuries and the need for a car, a new diagnosis or the passing of a loved one.  These changes can feel like someone pulled the rug from under our feet and can leave us scrambling for quick solutions.  In these instances, it makes sense to seek guidance from those who are qualified and informed.  They can help us to implement the necessary changes in a timely manner, but we must also adjust to our new circumstances.  This flexibility help us to become resilient, to bounce back from adversity, to move forward forearmed with the lessons learned through challenges, and to find a “new normal” in which to thrive!

A third type of change can be brought on by us.  It can be a deliberate choice followed by the actions that will help us to achieve those changes.  This is the kind of change that results from our mindful observation of a situation and from the desire to make improvements.

Change requires work on our part, an earnest effort, perseverance and patience.  The process itself makes us put into practice behaviors and mindsets that will help us to cope and to manage whatever crosses our path in the future.  Reaching our goals is the sweet reward!

I have borrowed highlights from “The Caregiver Helpbook: Powerful Tools for Caregivers” [from CaregiverU], added information I have read online, and drawn from my own experiences to put together a series of MAKING CHANGES WORKSHEETS PDF that can help you to identify obstacles in your caregiving and to find concrete ways to work around them.

Life itself is in constant flux.  No 2 days are exactly the same.  Our brain needs stimulation, our spirit needs inspiration.  While I agree with the old adage, “If it’s not broke, don’t fix it,” I do believe that upsetting the mundane applecart can recharge us, motivate us, let us enjoy more and live more!

For sure, if it is broke, do fix it!  It will be a “change for the good!”

 

PROGRESSIVE BLOG PART 2014

 

 

 

 

 

 

 

 

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I am thrilled to be participating for the first time in CareGiving.com’s Holiday Progressive Holiday Blog Party 2014!  What a golden opportunity to share insights, to learn tips, to “meet” and to support family caregivers everywhere!  (Then again, leave it to Denise Brown to dream up and implement fantastic ideas that enhance and strengthen the community of family caregivers!)

My personal mission at CaregivingCafe.com has always been to connect family caregivers to reliable information and resources.  Who better to provide tried-and-true bits of wisdom than another family caregiver?

In a nutshell, the Holiday Progressive Blog Party invites family caregivers to visit blogs that have been created by family caregivers or by groups that support them. Caregivers are encouraged to leave a helpful tip, a polite comment or well-wishes and inspiration.  It is a way to bring together family caregivers across the globe and to gain perspectives that may help in caregiving.  That’s it!

So feel free to peruse through CaregivingCafe.com and through this blog.  You will find a directory of links to trustworthy websites, organizations and information that will show you how to manage caregiving tasks, to deal with stress and negative emotions, and to take good care of yourself.

Thank you for visiting!  I look forward to learning, sharing and fostering mutual support – it takes a village to be a successful family caregiver!

All best wishes,

Lynn

(Family caregiver for my husband, who lives with CRPS; long-distance caregiver for my mother.)

 

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