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.

 

 

           

 

Hospice Mythbusters – Fact vs. Fiction

In honor of November being Hospice and Palliative Care Month, we liked to dedicate this blog to talking about hospice. To us, life is a celebration. We encourage people to continue to live well, live fully and to live as if each day is a gift. To us, hospice is about supporting people who are facing advanced illness by helping them to continue living with love, joy and hope.

Myths about what hospice is or how it works can be detrimental to its success. So we hope by busting a few of these myths, we can help provide a better understanding of what hospice really is – a kind and compassionate philosophy of care designed to relieve suffering and to support the celebration of each individual life. Hospice and palliative care is not just for the end-of-life. It is a holistic approach that includes caregiver support, spiritual care, bereavement and much more.

MYTH #1 – Hospice is this place where people go to die – to give up hope.

Fact: Quite the opposite. Hospice is not a place. It is a special kind of healthcare focused on keeping the patient comfortable once the patient and physician have decided that the underlying disease can no longer be treated or cured. Hospice care can occur in a variety of settings. It neither hastens nor postpones death and is focused on the belief that quality of life is as important as length of life. Hospice care can be provided at home, a nursing home or in an assisted living facility. It is not a specific place, but an ideal, a philosophy, a mission carried out by many capable, dedicated hands. It is hope. Hope that each life can end in the arms of compassion, dignity and peace.

MYTH #2 – Hospice is just for the patient.

Fact: While service to the patient is a large part of what hospice provides, it is so much more that that. Hospice care not only provides for physical needs, it also provides for the psychological needs of patients. But it doesn’t stop there. Hospice provides a wealth of services for those all-important family members and friends who we call caregivers. The role of a caregiver is selfless and often times they need support too. So hospice care supports them by giving them knowledge, spiritual guidance, breaks from caregiving and sometimes just extra hands to make their caregiving more meaningful and easier.

MYTH #3 – All hospice programs are the same.

Fact: Not all hospice organizations are the same. While they are required to provide certain services, they all have their own business models just like any other business. Some operate for a profit and some don’t. They develop their own mission statements and conduct their business based on their state’s particular set of laws.

MYTH #4 – Once on hospice care, a patient can no longer receive traditional care.

Fact: Each patient’s plan of care is individualized to his or her particular circumstances by their primary care physician and their hospice care team. Patients sometimes go in and out of hospice based on their needs. They can return to traditional care if needed. If hospice care is required again, all they need to do is re-enroll.

MYTH #5 – Patients can only get hospice for six month.

Fact: Medicare benefits and some private insurance companies base the need for hospice on a certain set of criteria. Within that criteria, it speaks of the prognosis for life expectancy being six months or less. This does not mean the care is automatically discontinued should the patient live beyond this timeframe.

MYTH #6 – Hospice can only be provided in the patient’s home.

Fact: Hospice services can be provided wherever the patient lives. In many cases, the patient decides they want to be at home. In other instances, such as with dementia patients, it is best for all concerned if care takes place in a nursing home or assisted living facility of some sort. This decision is up to the patient and their family members.

MYTH #7 – Patients are no longer under the care of their own doctor after signing on with a hospice organization.

Fact: Hospice organizations work in concert with primary care physicians to determine the best care plan for patients and to maintain that plan should changes be required.

MYTH #8 – Hospice is expensive.

Fact: Medicare and some private insurance companies pay for all or part of hospice care. Hospice organizations, whether they are profit-based or non-profit, usually have financial aid services. Generally, care is given to all regardless of the ability to pay.

MYTH #9 – Family and friends are not involved in hospice care.

Fact: Having family and friends involved in the care of a loved one makes for a very rich and meaningful experience for all. These dedicated caregivers are welcomed openly and are a big part of why hospice care works so well. Hospice provides them with the training and support they need in order to be effective caregivers.

MYTH#10 – Hospice only starts when a person is bedridden and stops after death.

Fact: Hospice is about enhancing quality of life. Many patients are able to live happy, productive lives outside of the confines of a bed. They are encouraged to celebrate life in any way they are capable of doing so, focusing on living to the best of their ability. Hospice bereavement teams help those left behind long after their loved one has passed. These services include support groups and individual counseling sometimes as long as a year after death occurs.

These are probably just a sampling of the myths that surround hospice care. If you have additional questions or concerns, please contact a hospice team member to get all the answers you need.

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.

How Can You Be an Effective Long-Distance Caregiver?

In the US today, as many as seven million people are currently helping to take care of a parent, spouse or friend long distance. About 60% of these caregivers are women.

So what is considered “long-distance caregiving?” When you live over an hour away from the person who needs to be cared for, you are considered a long-distance caregiver. It may seem to you that sometimes you are not all that effective; that you are not there when you are needed most. However, there are many things that you can do to help from far away that are effective and significant to the wellbeing of your loved one.

Here is a list of some of the things you can do to help out:

  • Provide emotional support through phone calls or Skype
  • Manage financial and insurance matters
  • Arrange and monitor in-home care
  • Support the primary caregiver
  • Hire and monitor professional caregivers
  • Create a website for communicating with family and friends
  • Plan occasional trips to help with things that need to be fixed around the house, or to spend time with your loved one and give the primary caregiver a break
  • Arrange for grocery deliveries
  • Organize periodic family meetings (conference calls or Skype) to discuss care

So now you have some idea of what can be accomplished, but you still have some questions about how. Let’s take a look at a few of them.

How do I know when additional support is needed?

You may have to take on the role of detective in order to figure out if additional help is needed. Pay attention during phone conversations. Try to focus the discussion on daily routines such as meal preparation, cleaning, shopping and medical attention. You might be able to determine whether your family member is getting overwhelmed with the responsibility of caring for someone. You might be able to discover clues about how hard it is to prepare meals. Those clues will give you ideas about how you can assume responsibility and help even from far away. For example, perhaps dad is struggling with meal preparation and resorts to fast food a lot. You could arrange through his church group, friends and family or hospice volunteers to have meals brought in or prepared in the home for him.

Can I help with financial planning in any way?

Of course! In addition to financial issues, you can take care of all personal information for your loved one. The task of gathering in all may be monstrous, but once you have it all together, you will be able to react to any kind of crisis quickly. Much of this information is online and easy to access. You can be the central hub for things like home ownership, insurance paperwork and legal issues. This will also take the burden off the primary caregiver so they can focus just on the physical and mental aspects of caring.

Should my parents move into an assisted living community?

This is always an emotional decision for people to make. Perhaps your parents have been in their home for 30+ years and are reluctant to leave. However, care and maintenance are impossible for them to keep up with and dad has been diagnosed with Alzheimer’s. This is a disease that, at some point, will require professionally trained care in order to assure the safety of the patient as well as those living around them.

Sometimes people have negative thoughts about assisted living. Remember, the goal is to make sure your family member is getting the right care, at the right time and that they are living somewhere that is safe and comfortable.

I know my mom only has a few months to live, but I can’t take that much time off work? What do I do?

This is never an easy situation and can be made more difficult because of distance. Hospice care can help ease your conscience and provide outstanding care for your family member. Hospice caregivers are experienced in end of life care and are trained to help by improving the quality of life for your loved one.

Seek emotional support from a clergy, support groups or friends. Make sure you are taking care of yourself through this stressful time.

Contact your parent’s physician to talk about the type of care that is going to be needed. Whether it is in-home or some sort of assisted living, hospice can be there to provide any type of support necessary.

Visit as often as you can. When you can’t be there, send cards and letters. You could set up a computer so you can have actual face time with your family member when you can’t be there in person. Let your loved one know what an important person they have been in your life.

 Another helpful organization is The National Institute on Aging. Their website, http://www.nia.nih.gov/health, is a very helpful resource for identifying all kinds of support organization and they have many free publications to help with some of the issues you are facing.

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.

 

 

 

Re-invent the Bucket List

 

Many people in their lives come up with some version of a “Bucket List.” There are always things people want to do with the time they have left whether it is ten years or ten months. As a caregiver, you can help your loved one “re-invent” the Bucket List. Start thinking about the Bucket List in a different way. Make it a collection of positive possibilities. Just the thought of making them come true is enough to make anyone happy.

Here are some things you can focus on:

–     Life goals

–     Bring joy to others near and far

–     Don’t just dream the dreams – live them

–     Find a little joy in small things each day

–     Give credit to those who make dreams come true

First of all, as you begin this list, be realistic according to your loved one’s current health conditions. If they are bedridden, skydiving would not be a good choice even though they might have always wanted to try it. However, reading the one Hemingway they haven’t read or keeping a birthday journal recording all the birthday celebrations they can remember might be within their reach.

Skyping family and friends who live far away could be on the list. Have an all chocolate day, as long as there aren’t any dietary restrictions. Be creative and make it fun! Get others involved. They can make suggestions for the list or contribute towards making items on the list become a reality. Family and friends will enjoy helping and wonderful memories will be created.

If your loved one is not confined to bed, make the most of “good days.” Pick something on the list and JUST DO IT! Aunt Jane has always wanted to see The Phantom of the Opera on stage. Get the tickets and take her. You dad has always wanted to see the Grand Canyon. If it’s possible, make it happen!

Second, the list should be divided into things that can be accomplished on “good days” and “not so good days.” This way, no matter what, each day your loved one can feel like they have accomplished something. Each day is a gift. Each day brings a smile to their face.

Finally, make sure the list includes things that have an external focus. Paying it forward can make a person feel so incredibly good inside. In other words, make sure your loved one is passing something positive on to someone else in the world. Maybe it is a note of encouragement to someone else with health issues. Maybe it is a donation to their favorite charitable organization. Donate old games to a Boy’s Club in your hometown. Perhaps they can read to children at the library during story hour.

Your Hospice of Montgomery care team has many years of experience and can assist you by helping you build the “Bucket List” or maybe even helping you make the things on your loved one’s list come true. Remember – life goals, bring joy to others, live your dream, find a little joy and don’t forget to give credit to those who have helped make it all come true for your loved one.