Living With Lung Disease

With nearly 12 million Americans living with COPD and another 12 million not yet diagnosed, chances are good that you may know someone living with Chronic Obstructive Pulmonary Disease.  With this growing number of Americans affected by the disease, the need for informed and capable caregivers is more critical than ever.  As someone who may be the primary caregiver of a COPD sufferer, you may feel that you have been thrown into the caregiver role and that you are unsure where to start.

So what is COPD? It encompasses diseases that block the airflow to and from the lungs and make breathing difficult. The damage done to the lungs that causes COPD is irreversible. Symptoms can be controlled and further damage stopped, but it cannot be repaired. The unfortunate thing is that symptoms do not usually appear until damage is significant. The most common are chronic bronchitis or emphysema.

Symptoms can include:

  • Constant mucus productions
  • Chest tightness as the airway linings become thick
  • Wheezing and an irritating cough
  • Breathlessness due to hampered airflow
  • Scarring in the lungs
  • Lack of energy
  • Blueness in the fingertips and nails

 Lung disease is often very stressful for loved ones and their family caregivers. People with COPD frequently experience difficult and uncomfortable symptoms that are difficult to manage alone. They struggle coping with their debilitating shortness of breath as well as their dependency on oxygen. They also face the stress of frequent hospitalizations. In fact, over half of patients with COPD are readmitted to the hospital within twelve months.

It is highly recommended that patients with COPD obtain care to help manage their illness. Why? Because COPD is tricky to treat. Patients can go months in a stable condition. Then they sometimes experience rocky episodes called exacerbations. This is where very unexpectedly the symptoms can worsen for a period of days or sometimes longer. COPD is highly unpredictable.

Did you know that Hospice of Montgomery may be able to help?  Individuals with advanced COPD may be eligible for hospice care. Hospice of Montgomery, with our strong interdisciplinary approach, can greatly improve quality of life for people with advanced COPD. Our specialized teams of caregivers are uniquely trained in the management of COPD. By providing services to relieve pain, control symptoms and reduce anxiety and stress, we can help make this difficult time easier and help families facing COPD return to living as fully as possible.

 

 

           

 

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Defeating Depression

The caregiver is often the last person to get care for themselves. Maybe it’s because you are so busy making everything perfect for everyone else; making everyone else feel comfortable, happy and loved. Caregiving is a selfless task carried out by unselfish people who are abundantly filled with good intentions.

But this caregiving business can be rough at times. It can drain your energy and your spirit. It can get completely overwhelming when you are giving 110% all the time.  As a result, nearly 20% of all caregivers suffer from some form of depression either during caregiving or after caregiving has ceased. Sometimes it lasts up to three years or more.

As a caregiver, it is vital that you remain healthy, well rested and mentally capable of providing care for your loved one. Caregiving does not cause depression. But when caregivers get caught up in the web of trying to do everything themselves, they become overtired and often isolated from people who care about them. Even the most capable people can become angry, sad, lonely and anxious.

 Of course, people experience depression in different ways and in varying degrees. It can change over time as well. Ask yourself these questions:

– What are your eating habits like? Have they changed dramatically causing unusual weight gain or loss?

– Are you tired all the time?

 – How is your sleep? Do you seem to want to sleep all the time or is your sleep  interrupted on a regular basis?

– Does it seem like you get angry or agitated easily?

– Have you lost your love for things that used to bring you joy?

– Do you feel like you aren’t good enough or that nothing you do is good enough?

– Do you seem to have chronic pain, headaches, digestive issues?

If you found your answer to several of these was “Yes,” it might be a good idea to talk to someone who is qualified to diagnose and treat depression. A professional such as a psychologist or psychiatrist can assess your condition and suggest therapeutic methods to help you with your symptoms.

Remember, depression is not something to be embarrassed about. Sometimes people feel embarrassed and don’t seek treatment because they are ashamed.  These embarrassing feelings can turn to guilt that can damage self-esteem.

Besides seeking the advice of a professional, also look into respite care for yourself. Check with your hospice team. They can lend a hand and take some of the load off your shoulders.  Ask family and friends to take over so you can have a break to do something you enjoy.  Find a good support group in order to learn coping skills.

As a caregiver, it is so important that you take care of yourself so that you can provide care for your loved one. Your emotional and physical needs should not be sacrificed in your role as caregiver. There is a way to get balance back into your life. Ask for help. Defeat depression. Turn your role as caregiver back into the positive experience it should be.

History of a Loved One-Scrapbooking and Pictures

 

Preserving life for future generations has always been a priority for humans. It’s a way of telling our stories so that the past is part of the future. We preserve and share our letters, our artwork, our photos and our words. Your loved one’s life is important to you and your family. Scrapbooking and photo albums are a great way to chronicle the important events of your loved one’s journey.

Some people prefer actual scrapbooks and photo albums. If you or a family member has a talent for these crafty options, it is a great way to spend time with your loved one. However, if you don’t have the talent, the time or the desire, check with your Delaware Hospice team. We might be able to find a talented volunteer whose specialty is scrapbooking or putting together beautiful keepsake photo albums. We encourage all of the families we care for to find a way to treasure and preserve their loved one’s memory. Visiting this scrapbooks or photo albums help the family begin to heal after the loss of a loved one as they reflect of all of the joy their loved one’s life encompassed.

Online or actual options

There are online options for scrapbooking and photo albums that are either free or low in cost. This is an easy way to preserve memories. You can also share these with other family members. Since some family members may live far away, it is particularly advantageous to use the online versions. People in your “tribe” can make their own contributions to online versions if they want. Both stills and video can be part of this wonderful expose of your loved one’s life. They have an eternal shelf life as long as you have them backed up to an external source.

Some online options are:

www.mixbook.com

www.smilebox.com

www.cropmom.com

www.shutterfly.com

www.heritagemakers.com

Actual scrapbooking and photo albums are wonderful because the allow people to enjoy interacting with their loved one in a way that developing a digital version does not allow. Wading through boxes of photos and sharing photos and stories can provide hours of bonding and laughter.

It is also helpful for patients who suffer from Alzheimer’s or dementia. Working on a chronicle of their lives helps keep memories active in their minds. Besides keeping memories fresh, it helps by providing simple tasks to perform. Since these diseases affect the mind’s ability to remember not just who we are, but how to do things, it gives a patient daily mechanical practice at performing simple tasks like writing, cutting and gluing.

There is a program called Memories to Treasure that has an informative website targeted specifically to caregivers of Alzheimer’s patients. Visit www.memoriestotreasure.com for more information about this program.

Our memories and our histories are precious. Making the time to keep them safe will give your loved one a sense of how important their life is to those they love and to the larger community of all humanity. It takes each tiny grain of sand to make a desert. It takes each drop of water to make an ocean.

Whether you do it yourself, solicit the help of a friend or family member or ask for help from a hospice volunteer, keep you loved one’s history safe and pass it on to others. Happy memory building!

 

 

 

 

 

 

 

 

 

The Healing Power of Storytelling

Who among us doesn’t enjoy a good story? Some tale of our personal lives or the lives of others. Storytelling can be particularly significant when the story helps someone else to grow and overcome something difficult they are going through in their life such as a life-limiting illness.

True storytelling is an art form. However, there is an emerging field called narrative communications and the professionals in that field are identifying the effects of telling stories on the health and happiness of patients. It is through the connected feeling a person has when hearing a story that helps patients get through the tough news of a diagnosis or helps them to make changes to some strongly ingrained behavior in order to improve their health; like smoking or a drastic change in diet.

So why does this work? Well, storytelling is very human experience. From the earliest time, it was a way our ancestors told about the important moments in their lives and the lives of those around them. It was necessary for survival. It was also the earliest form of learning. It helped people make sense of their lives and the world they shared.

When a patient is suffering from a life-limiting illness, it is important to stay connected to family and friends in order to ensure greater quality of life. Storytelling helps loved ones remember times they have shared; memories collected and cherished. It sometimes invites laughter, sometimes tears, but always love and a connectedness that makes the patient and the loved ones feel close and united. It helps them to cope with whatever lies ahead knowing that they are sharing the experience.

So how does storytelling work? Humans all feel the need for a sense of identity, their place in the order of things. It’s instinctual. Tackling traumatic physical and emotional issues means an extreme shift in our own personal stories. Suddenly the story of our lives is being rewritten, usually without our permission. Storytelling helps a person assimilate or change direction. When it is an abrupt change or when the loss is great, it can cause a person to feel lost and alone. Storytelling helps them to reconnect, to find themselves again and to find a direction back onto the road of life.

As a family caregiver, your role in the storytelling process can be as the instrument of promotion.  You can be both storyteller and active listener.  Telling the story is vital, but so is finding an attentive, empathetic listener. Have you ever told someone a story and felt like your listener would rather be somewhere else? It made you feel unappreciated didn’t it? Being an attentive listener means tuning out all the other distractions and focusing on what is important at that moment – giving the storyteller your undivided attention. It is only then that storytelling produces its full benefit to both the teller and the listener.

You might even want to record these stories to share with others; perhaps with friends and family who live far away. Maybe you could preserve them for future generations who might benefit from the positive ripples caused by the impact of these stories. Today’s access to a multitude of multimedia tools makes it easier than ever.

 

 

 

One Person Can Make a Difference – Share Your Light

Young children often learn the little song that goes, “This little light of mine. I’m gonna let it shine.” Most of them don’t really understand the true meaning of the words, but they are filled with pride just the same to think that their light can be shared with others and that somehow this makes a difference – that somehow they make a difference. We all know that it’s a song promoting stewardship and sharing our gifts with others in the world.

One way to share your light is through caregiving. Caregiving takes on many shapes and forms in our society. It is a huge force that makes an enormous difference in the lives of millions of people around the world.

It’s ironic that you may not even be aware of the impact caregivers have until it touches your life or the life of someone you know. Once it does, a magical thing happens. You begin to see caregivers everywhere. There’s the lady who supports an elderly man on his morning walk. There’s an aunt who watches over a niece suffering from mental issues whose parents need to work. There’s the wife, gently working with her husband as he learns to regain use of his left hand after surgery. There’s a daughter helping her mother remember what she needs at the grocery store. They are all sharing their light. They are all making a difference with the positive energy of love and support for a fellow human.

Caregiving for a loved one with a life-limiting illness is an act of love and loyalty that goes beyond normal caregiving. It is a selfless exertion of effort to care for someone you love during a period that is emotionally charged and fraught with sadness.

However, giving care to a loved one with such an illness is one of the brightest forms of sharing your light that you will ever offer to another person. So whether you are currently in the midst of this incredible adventure, or if you are still considering putting forth your light to help someone else, there are things you should consider. Things you should reflect upon in order to take on this responsibility with all the horsepower you can muster in yourself. Your  team Hospice of Montgomery can be an invaluable source of information and there’s always an empathetic ear to listen and to answer questions.

Here are some words of wisdom collected from those who have travelled this path before you. They are snippets of truth passed on to you as a gift.

–     Take care of yourself so you can take care of others.

–     Let others help you. Don’t try to do everything yourself.

–     Don’t let guilt cloud your vision of what is truly important.

–     Don’t panic! Help is only a phone call away.

–     Talk to as many people as you can to gain knowledge from their experience.

–     Read as much as you can.

–     Take time for yourself.

–     Do not lose your sense of humor.

–     Sleep is important. Get as much as you can.

–     Find help for the sorrow. It will come but help is out there.

–     Educate yourself as much as possible.

–     Enjoy the process.

–     Cherish this time.

–     Have a strong support group. Consult with hospice for guidance.

–     Get your ducks in a row – legal and financial.

–     Keep hope alive.

–     Don’t be afraid to ask for help. You can return the favor some day.

–     Love and be patient.

–     Keep and open mind and an open heart.

–     Do not isolate yourself or your loved one.

Then when your particular journey is finished, you can look back on it with satisfaction, joy and pride knowing that your light truly made a difference in so many, many ways. The world is truly thankful to those people who open themselves up and give with their hands and hearts. Humans can’t live in this world without them. It is an essential element of human survival just like food and water. Be steadfast in your role as caregiver and share your light with dedication and love.

 

 

Helpful Reading for Caregivers

“Knowledge is power? No. Knowledge on its own is nothing, but the application of useful knowledge, now that is powerful.”

Rob Liano  – Integrity First Consulting Group, Inc.

As a caregiver, it is often a struggle to understand exactly what is the best course of action at any given time. Decisions sometimes have to be made quickly and often stress is created from a lack of knowledge – knowledge about a particular disease, knowledge about proper care methods, knowledge about physical and mental support, knowledge about legal and financial issues.

Caregivers enter into this selfless position with all the best intentions, but sometimes feel guilty if they fall short of their own expectations. Useful, targeted knowledge can help avoid those guilty feelings.

You gain knowledge every time you read our blog. That’s a quick resource. You gain knowledge each time you ask questions, whether it is to a Hospice of Montgomery team member, a doctor, a counselor or a clergy person.

This particular blog is dedicated to pulling together, from many sources, a list of suggested readings that might also be helpful in your pursuit for knowledge that can help you be the best possible caregiver. Along with reading materials, there are also websites that may help broaden your knowledge in different areas. Some of them offer webinars and video materials that are focused on caregiving.

This blog is posted as a resource that you can visit over and over again. Don’t let it overwhelm you with its vastness. No one says you have to read everything on this list in order to be a wonderful help to your loved one. Take a look. Find topics that you feel will enrich your experience or lower your stress and help you with the responsibility you have taken on.

Helpful Readings

Caregiving and Loss: Family Needs, Professional Responses. Published by Hospice Foundation of America, 2001

With approximately 25 million family caregivers in this country, one out of four households are providing care for a loved one. It is important for healthcare professionals to understand the unique needs of family caregivers and offer compassionate support. Featuring writings from 13 nationally recognized experts in the field of caregiving and loss, this book was developed in conjunction with HFA’s award-winning Living With Grief series.

The fearless caregiver:  How to get the best care for your loved one and still have a life of your own Sterling, VA, Capitol Books Inc.

 “Experts” on caregiving address topics such as legal and financial matters, care tips, dealing with medical personal, specialized caregiving, care of the caregiver, holidays, caregiving outside the home, and “end of life” considerations.

Therapeutic caregiving: A practical guide for caregivers of persons with Alzheimer’s and other dementia causing diseases.  Bridges, B. J. (1995). Mill Creek, Washington, BJB Publishing.

 This book is a down-to-earth practical guide for caregivers of persons with dementing illness.   A chapter on “The Therapeutic Role of the Caregiver” identifies feelings and role changes of the caregiver and where to get support.  Practical suggestions for “ caregiving” are provided throughout the book.

Living with grief:  Who we are. How we grieve.  Doka, K, J. & Davidson, J.D. (Eds.) 1998). Philadelphia: Brunner/Mazel.

The Hospice Foundation of America provides many services to people throughout the U.S.A.   This book includes a series of articles related to loss and grief with emphasis upon spirituality, ethnicity and culture, and helping people “make sense out of loss.”

Goodwill: Neighbors helping neighbors program really does involve “good will” (2002).  Utah Spirit, January, pgs. 24-25.

This article describes a community-based program designed to involve neighbors in helping meet the needs of low-income seniors with limited social supports.  Volunteers are instrumental in providing services to seniors who need a “helping hand.”

When aging parents can’t live alone: A practical family guide.  Rubenson, E.F. (2000).  Lincolnwood, Illinois, Lowell House.

Information in this book will help families decide if placement in an alternative living situation is the best choice for an elder family member.  The author also addresses how to help families make a thoughtful and informed decision about which alternative living situation would best meet their elder’s needs.  The author provides step-by-step guides in examining concerns that relate to physical, emotional and mental health, personal finances, insurance coverage and benefits, safety, costs, accessibility and available services.

As parents age: A psychological and practical guide.   Ilardo, J.A. (1998).   Acton, Massachusetts, VanderWyk & Burnham.

Many decisions are faced by people as they age – for the elders themselves, their children and other supportive family members.  Issues to be addressed and available resources are identified.  Helpful checklists and worksheets are provided.  Topics addressed include:  (1) the impact on the family; (2) what to do if your aging parent has a mental problem; (3) helping your parent stay at home for as long as possible; (4) when a parent must leave home, and others.

How to Care for Aging ParentsBy Virginia Morris, Workman Publishing Group

This book is a comprehensive, helpful resource providing information regarding financial, legal, medical, psychological and day-to-day resources important to people as they age and for the person who will direct their care.

A Caregiver’s Challenge: Living, Loving, and Letting Go
By Maryann Schacht, MSW

“Many books address the needs of patients; few speak to caregivers. A Caregiver’s Challenge combines personal experience and professional expertise to provide the knowledge and support that caregivers need.

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There are many informational brochures created and distributed by the Hospice Foundation of America. Some of them can be conveniently downloaded. Here are a few titles:

 

Supporting your Friend Through Illness and Loss 


 

This brochure recognizes that the challenges brought about by terminal illness and loss affect not only the person experiencing it, but also family members, co-workers and all those touched by the situation. This brochure offers stories and advice for those who want to help but don’t know what to say or do.

 

Caring for Someone Who Is Dying

 

This brochure offers insight into the dying process. Although the diseases, relationships and circumstances are different, a terminal illness involves similar issues and difficulties. This brochure offers some guidelines, provides a sense of understanding, and emphasizes the need for caregivers to take care of themselves.

 

A Caregiver’s Guide to the Dying Process

 

Many people who are caring for a terminally ill person have never done it before. A Caregiver’s Guide can serve as a sensitive, helpful resource for families who are being served by hospice. A Caregiver’s Guide to the Dying Process prepares caregivers by discussing both the physical symptoms of dying and the psychological issues that accompany the dying process. It may also be used by hospices and other end-of-life organizations as a helpful training aid for staff and volunteers.  

 

Medicare Hospice Benefit 

Trying to understand the nuances of rules and regulations can be overwhelming. This is the official government publication for Medicare hospice benefits. 

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Government publications on political issues regarding aging and caregiving:

Who will provide care?  Emerging issues for state policymakers (2001).  Proceedings of the Family Caregiver Alliance, National Center on Caregiving, 25th Anniversary Conference Proceedings.  San Francisco, CA, October 26-27.

Among the issues addressed at this conference were the following:  (1) Long-term Care; (2) Respite Care; (3) Family Caregivers and the Workplace; (4) Paying Families to Provide Care; and (5) Implications for Family Caregivers.

Aging in the 21st Century:  Consensus report (2002).  Stanford, California:  The Institute on Women & Gender.

 

“Experts” on aging identify critical issues faced by elders and their families in the 21st Century.  Topics include:  (1) Living (and Dying) Longer; (2) Caregiving; (3) Inequities Mount; (4) How Social Institutions Fail; and others.

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There are also a variety of magazines and websites all geared to help caregivers learn more about their roles.

Magazine:

Today’s Caregiver

Caring Today

Family Caregiver

The Hospice Journal

Websites:

www.hospicefoundationofamerica.org

http://www.caregiver.com

http://www.Aarphealthcare.com

http://www.mayoclinic.com

www.helpguide.org/elder/caring_for_caregivers.htm

 

 

Home Safety

Most people are familiar with the concept of childproofing a home when a new baby arrives. But what about bringing your aging parents in to live with you when independent living is no longer an option? There are several steps you can take to “elder-proof” your home and ensure a safe and comfortable environment for your parents in their later years. And when a parent, who is facing an advanced illness is living with you, home safety takes on a new level of importance.

Preventing Falls

A primary safety concern with the elderly is the prevention of falls. Falls are the leading cause of injury or even death among the elderly. Fortunately there are many ways to safeguard your home against potential falls.

  •  Remove all tripping hazards such as books, shoes, toys, electrical cords, etc., from the floors.
  •  Remove all throw rugs.
  • Remove furniture from high-traffic areas if possible, and pad any sharp edges with plastic bumpers.
  • Remove the casters to stabilize movable furniture items.
  • Remove unstable tables and stools to avoid tipping, and put fragile or breakable items away.
  • If your parent uses a cane, you may also wish to attach a loose wrist loop to the handle. This will prevent your parent from having to bend down to retrieve a dropped cane.
  • Polish linoleum and wood flooring using only non-slip floor wax.
  • Textured strips can also be placed on linoleum to provide better grip, and all spills should be cleaned up immediately.
  • Add grab bars or handrails along staircases and hallways to help prevent falls, and grab bars next to closet doors to support your parent while dressing.
  • Place colored, non-slip strips along areas where floor levels change, such as stairs and doorway thresholds, to help clearly identify where your parent will need to step up or down and prevent stumbles.
  • Make sure the bed and chairs are easy to get in and out of, and that chairs have solid and supportive arms and backs.

Lighting the Way

Lighting is another important safety consideration in the prevention of falls. It is easier for elderly eyes to adjust if there are consistent lighting levels throughout the house, using low-glare bulbs and shades. Night lights are helpful to guide your parent along stairways as well as from the bedroom to the bathroom and kitchen. Light switches placed at both the top and bottom of stairs will ensure good visibility. Install a light switch that can be reached from the bed to prevent your parent from fumbling in the dark if they awaken in the middle of the night. Illuminated light switches are much easier to locate in the dark, or you may choose a clap-on, clap-off lighting system. Flashlights should be easily accessible in all rooms of the home, especially the bedroom.

Bathroom Safety

The bathroom can be a particularly treacherous room for the elderly, but is easily adapted for safety. Consider taking these safety measures:

  • Adding an elevated toilet seat with handgrips on both sides, and toilet tissue within easy reach can ease the strain on an aging parent’s back and legs, thus reducing the risk of falling.
  • Equip the tub with a bath chair, or grab bars or a handrail placed at both sitting and standing levels.
  • Use secure non-slip mats in the tub or shower, along with a wall-mounted liquid soap dispenser to keep your parent from having to bend down to retrieve a dropped bar of soap.
  •  Consider changing to hand-held shower devices. They are easier to use when mobility is limited.
  • If your parent does happen to slip in the tub, a shower curtain securely mounted into the wall will offer more support than a pressure-hung curtain that will pull away easily.

Temperature Concerns 

As we age, our sensitivity to hot and cold temperatures may wane. Anti-scald devices can be installed which will automatically shut off the water if it gets too hot. Faucets with a single control for hot and cold water may be easier to adjust for temperature. You should also ensure your parent has sufficient robes, blankets and warm clothing available to maintain their body temperature without the use of dangerous space heaters.

Staying Safe Outdoors

Outside the home, make sure all walkways, paths, steps, decks, porches and entranceways have good lighting, solid traction and handrails for support. Keeping sand or rock salt by the door is a good idea for potentially icy weather. If your parent is wheelchair-bound, ramps can be installed for easier access. Exterior motion sensing floodlights will light your parent’s way and avoid the necessity of fumbling with keys in the dark.

When it comes to safety in the home, prevention really is the best medicine. Elder-proofing your home before your aging parent moves in will ease the transition, helping them maintain a sense of independence and affording you the peace of mind that comes with knowing you’ve provided every safeguard for their wellbeing.