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.

Siblings

 

 

 

 

 

 

 

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(From the beginning, my sister, my brother and I have focused on our beloved carees: first our father, then our mother.  I believe that this is the key to successful caregiving.)

The conversation at Caregiving Cafe support group this past week gravitated toward siblings who don’t help with caregiving for aging or fragile parents. Unfortunately, this is a common situation that is hard to comprehend and harder to live with.  Despite the difficulties that surface, however, solutions DO exist!

Unresolved issues from the past – perhaps filed away in our memory bank so securely that we may have forgotten about them – have a way to sneak up on us and make us re-live those moments of intense emotion and pain.  Or perhaps the wounds never healed at all and remain fresh with hurt, anger or resentment.  They say that we are the sum of our experiences, and those experiences may have steered us away from the closeness and mutual appreciation that family once provided.  As we lay our course through adulthood, we create new associations with whom to travel, adjusting them as life moves us from place to place or from circumstance to circumstance.  Family ties can be weakened or broken unless diligent care is taken to preserve and to strengthen them over years of change.

The initial presumption would be to count on siblings coming together to tend to parents as their health declines.  Not necessarily so!  For the reasons above and for many others that remain inexplicable, the sad truth is that many siblings are left caring for one or two parents on their own.  Some are fortunate enough to get support from 1 or 2 brothers or sisters, with whom care is reliably coordinated.  Many family caregivers, however, cannot count on this support.

So what can a family caregiver do to enlist the help and cooperation of siblings?

Several attendees talked about how they had dealt with their less-than-helpful siblings.  As one of our resourceful caregivers said, she decided to spend her energy on managing the tasks at hand rather than to continue to envision a “perfect” scenario where her sibs would lend a hand – and be disappointed by the reality that they weren’t. She decided to take charge & to coordinate efforts with the sister that did help, rather than to continue to ask for assistance that never came.

 

CEO of CAREGIVING

 

 

 

 

 

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[This coordinating of help is what being the Caregiving CEO is about!]

Another family caregiver got the go-ahead from her father to hire a caregiver as needed and to purchase items that helped with his care.  She was lucky that another sibling spoke up for her when justification was required by the rest of their brothers and sisters.  She decided that whether her sibs liked the idea or not, she was okay with that.  It was their problem if they didn’t agree, not hers.  I would add that if someone is not helping with caregiving and is simply criticizing without any basis, then he/she has no understanding of this particular caregiving situation; therefore, he/she has no say in the matter.  I might even suggest that the caregiver ask the critic, “Would you like to do it next time and show me a better way?”

Other caregivers had siblings who paid for caregiving needs when they couldn’t be or chose to not be there in person.  While the ideal is for all family members to come together for the sake of the loved one, reality can make this a challenge.  A phone call or a letter, funds to pay for a sitter / equipment / supplies / respite / groceries / medications are welcome alternatives.  The vision of a perfect caregiving situation can do more harm than good, especially to the family caregiver.  It is best to be realistic and to accept the help that is given, instead of measuring how this help compares to an unattainable ideal.

I encourage family caregivers to ask for help from relatives, friends or neighbors without expectations.  [Have your list of tasks handy for when they say yes or offer to help!]

But as a fellow caregiver pointed out, we don’t know what our relatives / friends may be dealing with that keeps them from helping.  Whatever the reason, it behooves us to accept – not necessarily to like, but to accept – the fact that they won’t help and to create a new “caregiving family” who will support us in caregiving.  Maybe not easy, but doable…and necessary.

Let us also forgive those whom we feel have not supported us when we needed them.  The animosity or exasperation that we may feel will eat away at us over time and make it a burden with which to contend. Forgiveness allows us to move past hostility, indignation and suffering.

 

FORGIVE

 

 

 

 

 

 

 

 

 

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From: Forgiving the Undeserving

“…a bitter spirit, like cancer, penetrates every part of our life.  Anger and resentment are symptoms that cannot be pushed away and ignored.  They spill out, harming relationships and leading to risky decisions.

Withholding forgiveness may feel like we are punishing the offender.  But people cannot take revenge on one another without destroying themselves.”

Ephesians 4:30-32

 

We have to work with what we’ve got.  Let’s focus our energy on finding ways to manage our situations, using resources, creating a care team that supports us, and moving forward.  Let’s not allow the frustration / anger / hurt that stems from lack of familial support to interfere with accomplishing what we need to.  It is emotionally draining. Use it instead as fuel to find a path toward your goals!  [If it helps…remember that what goes around, comes around!]

We, as primary family caregivers, are responsible for the care our loved ones receive.  We do the best we can under the circumstances.  Give yourself credit for ALL that you do & have confidence in your abilities!

 

Below are some articles about siblings & caregiving:

Getting your siblings to help with caregiving

Sibling Rivalry: The Challenges of Caring for Elderly Parents

Out-of-Town siblings may feel shut out of caregiving

What to do when siblings can’t agree on a parent’s care needs

Top 3 Excuses from Siblings Who Don’t Help with Caregiving

“Each caregiver has to know when to fight, and when to give up the battle and move on. There is no right or wrong time. It’s up to you.”    Carol Bradley Bursack

 

 

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.

 

*   *   *

 

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.

 

 

*   *   *

About the author

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

 

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

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

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

 

TRIAL BY FIRE

 

 

 

 

 

 

 

 

 

TRIAL BY FIRE

 

INTERVIEW

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

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

 

 

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

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

 

 

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

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

 

 

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

… and they love to do it.

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

 

Charles Mattocks, World Advocate for Diabetes,       Family Caregiver

 

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

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

 

 

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

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

 

 

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

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

 

 

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

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

 

CHARLES MATTOCKS

 

 

 

 

 

 

 

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

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

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

 

 

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

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

 

 

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

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

 

 

 

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

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

 

About Charles Mattocks 

Charles Mattocks

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

 

Celebrity Chef & Worldwide Diabetes Advocate

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

 

 

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

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

 

MINDING OUR OWN

 

 

 

 

 

 

 

 

 

 

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

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

 

How has caregiving affected your family / you?

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

 

MINDING OUR OWN

 

 

 

 

 

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

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

 

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

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

 

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

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

 

MINDING OUR OWN

 

 

 

 

 

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

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

 

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

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

 

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

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

 

What are your plans for the future regarding film?

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

 

Anything else that you would like to say?

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

 

 

About the filmmaker

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

 

Credits

MINDING OUR OWN

Slow Your Roll Films

45 minutes | USA | Color | English

Directed, Produced, and Edited by Inaya Graciana Yusuf

Cinematography by Inaya Graciana Yusuf

Additional Sound: Erik Spink

Sound Design and Mixing by Kyle Oppenheimer

Composer: Kyle Oppenheimer

 

Website and Social Media

Official film site: www.mindingourownfilm.com

Facebook: www.facebook.com/mindingourown

Twitter: www.twitter.com/mindingourown

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

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

 

Press Contact

Inaya Graciana Yusuf

mindingourownfilm@gmail.com

 

PARTNERS

 

 

 

 

 

 

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

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

Our caree’s cooperation is essential in caregiving

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

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

 

Taking medications

 

 

 

 

 

 

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

 

How to encourage cooperation from your caree

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

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

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

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

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

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

 

Perspective

 

 

 

 

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

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

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

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

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

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

 

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.

 

BLOG journaling

 

 

 

 

 

 

 

 

 

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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.

 

 

In-home care services

 

 

 

 

 

 

 

 

 

 

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Caring for our loved ones when they have a chronic condition, when they require extra attention as a result of advanced aging or when a family caregiver needs respite can lead us to consider hiring home care help. How do we select home care help and make sure that our loved ones will continue to receive compassionate, respectful and appropriate care?

Carol Marak, an older adult and family caregiver advocate, shares some tips to help families find and select competent and supportive home care.

Thank you, Carol, for your great tips!

 

 

How to Select Home Care Help

Adult children and seniors must learn how to read the ratings of home care agencies prior to hiring a home helper.

The CMS, Centers for Medicare and Medicaid Services, created the Five-Star Quality Rating System to guide consumers when comparing and selecting a home care agency.

Most states do not require home care agencies to have a license or to receive certification. But if a home care agency offers home health, like nursing care, then the company must follow applicable laws, regulations, and state compliance issues.

Even though you’re hiring for in-home care and not home health care, CMS suggests that consumers should follow the same requirements and ask questions designed for the Five-Star Quality Rating System. Learn how Medicare measures the quality of data. 

 

Check the Qualifications of the Caregiver Agency

Here’s a list of the questions to ask a home care agency when you are ready to hire a professional caregiver.

1.  Does the agency have a state license? If one exists, request to read and review it.

2.  Does Medicare approve and certify the home care firm? Remember, only home health care agencies, the ones offering nursing care, will receive Medicare certification.

3.  How does the care company hire and screen the staff?

4.  Ask for client references. Ask for a list of physicians, discharge planners, and geriatric care managers who have worked with the agency.

5.  Ask health care professionals, family members and friends for professional caregiving recommendations.

6.  How does the care company train the caregivers?

7.  Does the agency staff receive continuing education? If so, what kind of training?

8.  Are the staff supervised? By whom?

9.  What factors evaluate the home care helper?

10.  What is the improvement program?

11.  Do the agency’s employees seem friendly and helpful? Make sure you feel comfortable with the agency’s representatives.

 

Caregiver Training

 

 

 

 

 

 

 

 

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Questions to Ask about the Caregiver

1.  Does the caregiver/home helper have a proper attitude?

2.  Is the home help aide friendly?

3.  Are you comfortable with the caregiver?

4.  Is the care aide certified?

5.  Is the caregiver insured?

6.  Does the assistant receive ongoing training? If so, what kind and what topics?

7.  Does the helper receive continuing education?

 

Types of Services Given by a Home Care Company

1.  Will you receive a written care plan before service begins? Make sure the doctor gets involved.

2.  Obtain a copy of the patient’s bill of rights.

3.  Will a nutritionist, dietitian, counselor, therapist or another specialist be referred if needed?

4.  How does the care provider include your family members and health care providers?

5.  Are limits set on the types of tasks performed?

6.  When will service be provided? Is care available round-the-clock, when needed?

7.  What procedures are in place for emergencies?

8.  How are problems addressed and resolved?

9.  Whom can you contact with requests, questions or complaints?

10.  When can services begin?

After you hire a home care company, stay on top of the services they give and monitor closely. If concerned, discuss it immediately with the agency or home health aide.

 

About the author

Carol Marak is a contributor for the senior living and health care market. She advocates older adults and family caregivers by writing on tough topics like chronic issues, senior care and housing. Find her work at AssistedLivingFacilities.org and HomeHealthcareAgencies.com and contact Carol on LinkedIn and Carol@SeniorCareQuest.com.

 

Communication

 

 

 

 

 

 

 

 

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Effective communication is an essential skill in caregiving.  While we all write or speak to one another, we don’t always convey our intended message to others. All too often, family caregivers tend to refrain from coming forward with their requests for assistance.  Most likely, they have plenty to say – in their mind – but never get around to verbalizing their needs.  This lack of communication not only keeps well-intentioned and willing helpers from chipping in, but family caregivers can grow increasingly discouraged by the apparent lack of concern from family and friends.  At other times, our perspective and the language that we use to express ourselves may sideline what we truly feel or may mask the real issue that we need to address.

Joan Craven writes about interactions among people and presents practical steps to get our message across.  In her book, “GOT IT! 21 Communication Tips for Busy Impatient People,” Ms. Craven reminds us that we “are the boss of ourselves.”  We can choose to react negatively or we can choose to act in a constructive way to move past an obstacle.  She stresses how important it is that you “Think before you speak, be thoughtfully honest, and speak to others as you would a very dear friend.”  Effective communication allows you to “build relationships,” inviting partners to walk alongside you.

 

GOT IT! - Joan Craven

 

 

 

 

 

 

 

 

 

 

 

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“GOT IT!” is a concise and valuable book that family caregivers can use as a tool to build a supportive care team or to communicate important health issues to medical professionals.  With clear tasks and boundaries, everyone involved can focus on the chosen job and avoid misunderstandings or mistakes.  It also serves as a reminder that each one of us has the ability to choose the way we think – hopefully, it will be a belief system and proactive thinking that allow us to move forward beyond all obstacles.

I have highlighted below some of the tips in GOT IT! and hope family caregivers put them to good use.

*  Speak up – people cannot read minds

*  Use facts while using “I” messages, rather than using accusatory “you” statements  (You always…)

*  Be a good listener & focus on the person with whom you speak

*  Be kind to yourself so you can be kind to others

*  No could have & should have

*  Model how you want to be treated and what you will / will not tolerate

*  Set realistic expectations and achievable goals

*  You don’t need to do it all

*  Do what you can at the moment without guilt

*  Family caregivers are in charge of their own time – surround yourself with supportive people

*  Don’t procrastinate

*  Don’t worry about things you cannot control – let go

*  Don’t complain – choose words carefully, be positive

 

 

 

About the author

“With over 25 years of experience in the communications industry, Joan Craven has seen first-hand the devastating consequences of poor communication and the transformative benefits of strong interpersonal and organizational communication.

She believes that good communication is the ability to build strong relationships so people trust you, respect your opinions, listen to you and want to understand your point of view.”

 

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Disclosure: Joan Craven graciously sent me her book GOT IT! in hopes of providing family caregivers with an additional resource.  I encourage them to seek out the resources that will help them to better manage their caregiving and am happy to share GOT IT! with them.