Wednesday, February 17, 2016

Interview: Odell Glenn, Jr. on His Book, Caregiving -- The Inspirational Manual

Odell Glenn Jr.'s new book, Caregiving – the Inspirational Manual: 200 Caregiver Tips with Healthy Lifestyle Benefits, isn’t written by a medical professional or caregiving practitioner, but a maverick “everyman” who had to learn the hard way when he assumed the role of primary caregiver to his parents. In his new guide, Glenn helps caregivers and those soon-to-be caregivers understand exactly what their role is, how to care with true love and compassion and also keep themselves healthy in the process. It comes at a time when millions of Americans each year find themselves taking on a “job” they didn’t expect in taking care of disabled and terminally ill family members. For more information, see Glenn's caregiving website.

I am deeply grateful to Mr. Glenn for taking time to answer my questions.

What should families with adult children do before the parents become infirm or ill to prepare for the possibility of having to become a caregiver?

Families need to have annual meetings with adult children early on. Discussion of future plans in an event that someone becomes terminally ill is vital. So that it doesn’t become a total shock on who does what, these discussions should be made clear. Nothing should ever be assumed when it comes to life circumstances such as these. Knowledge about what a DD214 form is, what the power of attorney represents, health power of attorney and how different it is from a regular power of attorney, representative payee, medical laws, Medicare and Medicaid should be studied and researched as a family long before retirement. Funeral arrangements should be discussed with adult children. Who, what, where and how questions should be answered. This takes the stress off of the children. Life support questions, nursing home, adult day care centers or stay-at-home preferences should be clearly specified. A will should be in place as well. Without these things in place it gives added stress to the caregiver.

How did you first get interested in this issue?

There are currently 34.2 million adults in U.S. who have been a caregiver to an adult aged 50 or older in the last 12 months. That means close to 15% of all American adults are caregivers! This is just the tip of the iceberg as projections for future caregivers has gone sky high – it is estimated that there are 5.1 million U.S. family members with Alzheimer’s disease in 2015 and this will climb rapidly to 6.8 million by 2025. This is the ultimate reason why I wrote this book. It is to inform the many caregivers that find themselves daily in this dilemma. It was a sudden deep-end dive into new beginnings, unexpected struggle and a new rhythm on life that was unlike anything I had experienced before. After 9 years and still counting, I learned the hard way but am now able to release a wealth of information as an uplift to current and up and coming fellow caregivers as they assume a new chapter in their lives. They are not alone and the book can be used as a guiding hand and a beacon of solace.

How can caregivers protect themselves from getting burned out?

You often hear of caregivers as destroying their own health in the process and in some cases, left unable to care for others any longer. There is a fine line to draw between dedicating your time to your loved ones while also enjoying your own life and freedom in the process.

I suggest caregivers join a support group. In the event that your loved one has dementia or Alzheimer’s disease, just to know that others are going through the same kind of dilemma that you are going through helps you in so many ways. Also, seek a professional counselor. Alzheimer’s is a cruel disease with no cure. With all that you do, you cannot cure the disease and it continually gets worse. You may need to see someone to allow you to vent and let your frustrations out. It’s okay. You are only human.

I also suggest getting away for a day or two. Allow others to care or hire someone to sit for you. Read a book, go see a movie, jog, ride a bike, jog, go to the gym or have lunch with a friend. You will need these outlets to survive the wilderness experience. Writing and keeping a journal for me was meditative. My work away from home as a PhD candidate and a minister in and among other also keep me grounded in the world around me. I am grateful that I had an advisor at the university as well preachers who were sensitive to my work at home and allowed my schedule to be flexible in terms of hours. There are days when I do not go to bed because of this but somehow God gives me energy and grace to get things done with excellence. Isaiah 40:29 comes in handy “He giveth power to the faint; and to them that have no might he increaseth strength.” Some days seemed longer than others but prayer has been the key element that has taken me through the wilderness, up and around the mountains and through the valley. Keep life balanced through fulfilling your purpose. Embrace caregiving as a part of your life’s purpose and treat it as a job ingrained into the core of your being.

What kind of community and government resources are available to help caregivers?

If your loved one has served in the armed services, there may be help available. Make sure you know where and what the DDT214 form is and when and where you need to show it. The Alzheimer’s Association has funds available each year set aside for caregivers to use as respite. In the state that you live in, there are also state agencies that you need to contact to use state funds for caregivers. These funds help you to be able to get respite so that you will not burn yourself out. They are certainly not a lot of money and time but the very little that they do give helps you tremendously. Respite services can be quite expensive and so use these services when you need them. This is especially helpful when you have more than 1 person you are caring for with vastly different needs.

Senior citizen agencies are a really big help. They are in each community or within surrounding communities. This allowed me to work outside of the home while I had one in adult day care and the other in a local senior citizen community during the day. Church is another community service that is available. My church has noon day prayer and scripture reading on Wednesday and my Mom gets picked up. She gets weekly calls and visits from some of the members. There are also senior citizen luncheons and outings. These outlets help me tremendously!! My loved ones are around people that I trust and the programs are conducive to growth, learning and entertainment for them. In addition, in my community is an Interfaith Community Center wherein my mom volunteers in passing out food and clothing through a thrift shop. It is a Christian environment and an outlet for her. It gives me peace of mind that the surrounding community offers these programs. I suggest caregivers check around the community and in your local church to see where you can get help.

What do you want caregivers to learn from this book?

I want caregivers to realize that they have a voice. This book represents the voice crying out in the wilderness for caregivers, especially for those who are just beginning their journey. Psalms 82:3 says “Defend the poor and fatherless: do justice to the afflicted and needy.” As you selfishly care for your loved ones, I want caregivers to know that they can still have a wholesome life. My life is reflective of it. Through this journey, I was still able to complete a doctoral dissertation in chemical engineering (one of the toughest fields to get through), as well as carry out ministerial duties and voluntarily work for a non-for-profit foundation in my community while caregiving. The journey still isn’t easy but I managed to get it done through God’s grace. I now want to become a worldwide traveler. I am planning a trip to Italy!! How can I go? I don’t know but faith will take me there!

How is caring for a family member with dementia or memory problems different from caring for people with cancer or physical limitations?

Dementia and Alzheimer’s are degrading diseases and is not the normal process of aging. It is currently the sixth leading cause of death in terms of illness and disease. The person over times becomes worse and less cognizant. Unlike cancer or physical limitations, there is presently no known cure or cause as to why and how to prevent this disease. It can wear a caregiver out. You are constantly planning the schedule each day for the person. If you have more than one person that you care for, you have three very unique, different schedules to plan and prepare. Answering the telephone, bathing, dressing, eating can become a major problem in a home. Cleaning a home with hardwood floors or carpet can become a burden because of the damage the person can bring inside a home. The person with these symptoms may or may not recognize you. They become childlike and there is nothing you can do about it. Current medications are given to slow the process however there comes a point where these medications are of no effect. You do as much as you can to help them retain memory, but there comes a point where you have literally done all you humanly know how to do.

Pray, walk, march, run, protest and March in your local community to have research dollars spent on finding a cure to this disease! Partner with the Alzheimer’s association and other organization that advocate your concerns. Vote for the person in office that wants to invest in finding cures.

What legal documents do caregivers need to be sure to have?

As mentioned earlier, the DD214, health power of attorney, representative payee, power of attorney, will, funeral arrangements, birth certificates, passports, identification cards, Medicare and Medicaid information and a list of all doctors, nurses and physicians should be in your possession and kept in a safe place.

What kind of help does hospice provide?

When you have done your ultimate best to keep your loved one in the home and have discussed next steps with your loved one physicians, an extended care facility or nursing home would be the next step. These services give the patient 24/7 care. Nurses and doctors are on staff every day and every hour. There are also entertainment opportunities for them. They are provided three meals a day with haircuts and personal care. You find that as the person’s condition worsens this service will be extremely beneficial to you. We pray it doesn’t get worse, but if it does, this service is then available. There is nothing you can do about it but leave it in God’s hands. His hands are bigger than yours alone.

If you could make one change in the way families care for members who are ill, what would it be?

Everyone grieves in different ways. Some are more expressive and some keep their feelings private and internal. It’s okay to grieve because of the pain that you see your loved in. Families need to recognize the grief in each other and then help by sharing. In my case, I have a sister who relieves me each month with my mother, even though she and her family lives in an entirely different state. That only gives me strength to continue to fight the good fight of faith. It is a sacrifice however that’s a price you pay for care. I have a brother that comes and helps around the home. Another sacrifice that helps relieve the responsibility. All families need to be aware that with these types of diseases there will come challenges, but they can overcome them by working alongside each other.

Do families sometimes become closer when one member is caring for another?

I cannot speak for all families throughout the world. But they all should become closer. Caring through sickness is an example of how fragile life can become. I am reminded of the scripture in 1 Corinthians 13:13 “And now abideth faith, hope, charity, these three; but the greatest of these is charity.”

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