What is companionship?

Synonymous with the words fellowship, togetherness, friendship, or closeness. “The state of being with someone or having someone you know, who likes to spend time with you”.

All of us, young or old, have the need to be with other people. Nothing illustrates the importance of social interactions more than the isolation anxiety that people felt during the pandemic.  Generally speaking, we are at our “social peak” around the age of 20-30. At this time in our lives, we are engaged with more casual friends and acquaintances. We begin to plateau between ages of 30-45 when we are in a workplace environment and are engaging with colleagues. In our 50-60’s, our circle of friends begins to decline, because we have invested our time in more meaningful relationships. By the time we reach the ages of 70-80, many of us begin to experience the loss of significant relationships. A spouse or close friend may have passed away, adult children move away, grandchildren grow up and go away to college, or they become more involved in their own lives.  None of this is uncommon, but it can be distressing and leave us feeling lonely.

Companionship for seniors is incredibly important. Studies show that companionship promotes better emotional, physical, and mental health. These benefits equate to a longer life expectancy, better quality of life, and a potential increase in cognitive abilities. Additionally, companionship can give you a purpose, increase self-esteem, reduce blood pressure, and promote a heathier lifestyle.

 It is estimated that 14.7 million elderly citizens experience a lack of companionship (loneliness). The causes of loneliness can range from a long term illness that effects the ability to be independent or effects mobility; death of a spouse; lack of transportation; or a fear of leaving the house (a long term effect of the pandemic).

The long term effects of loneliness or social isolation include an increased risk of dementia (by 50%), depression, anxiety, lack of appetite, insomnia, and an increased risk of premature death. Yes, you can die of loneliness. Studies show that premature death from loneliness rivals that of smoking, obesity, heart disease, and physical inactivity. So what can we do?

Start by reaching out to resources within your community. Many local senior centers offer community meals, enrichment classes, movie nights, card nights, and trips to restaurants and local attractions. Some communities even offer transportation (taxi) vouchers for trips to the hairdresser (look good /feel good) or local stores. For those seniors that require a little more supervision, senior day care centers are an excellent option. They provide a safe environment, meals, guided activities, and companionship.

Another good idea is to try and learn some new technology. FaceTime and Zoom are very popular. It’s a nice way to stay connected, and to “see” a loved one on a regular basis, without actually having to be in the same room. Many local libraries offer free computer and smartphone classes.

Finally, and this one is my favorite, is to adopt a senior pet. There are many local animal rescue leagues that have older pets who are in need of a good home. It’s a wonderful way to give a “fellow senior” a good home, provide companionship, and get outside for a walk to meet your neighbors. Remember, physical activity is good for the body, mind, and soul.

If you have an elderly neighbor, check in with them from time to time. Stop by with a couple of muffins and some coffee. Please remember that even seniors living in nursing homes and assisted living communities need companionship. These facilities are overburdened due to the lack of staff and are not designed to provide one on one companionship. Remember not all seniors feel comfortable or have the cognitive ability to engage in the group activities offered within the facilities.

What is quality of life?

The definition of quality of life is a rather ambiguous one, it can mean different things to different people.

Some of the main indicators of a good quality of life encompass the “person” as having good social interactions, (being able to engage with others), physical and emotional well-being, and having the ability to function as an individual while learning new things. It’s “the standard of health, comfort, and happiness experienced by an individual or group”.  So what does that really mean?

As an example, one person may define quality of life according to their wealth or position in society. They may feel that staying at expensive hotels, dinning at fine restaurants, or driving an expensive car defines a good quality of life. They may also enjoy playing golf, going to lunch (dinners or parties), planning and attending functions, or engaging in group events.  Others may measure quality of life by having good physical or emotional wellbeing, being independent, or by having a purpose in life or social well-being. They may enjoy the experience of being out in nature, gardening, music, hiking, reading, or painting.

The reality is that there is no right or wrong answer. Quality of life is subjective. Many people’s views (or thoughts) on quality of life change as they move through life. For example, when we are in our 20’s, quality of life may mean going out with friends to parties or events. In our 30’s quality of life may be focused on developing meaningful relationships and a career. In our 40’s, 50’s and 60’s, spending time with our families and children, going to our children’s (or grandchildren’s ) sports events or dance recitals may signify a good quality of life. These things bring us enjoyment.  With that said, I believe we have “core” values that follow us throughout our lives.

Understanding your core values and what quality of life means (to you) is imperative.  Life can change in an instant. It’s never too early to ask yourself “what is really important to me” if I (or when I) experience a physical illness, traumatic incident, or decline in health. Other questions to ponder include; what are my core beliefs about quality of life;  what type of treatment do I want (or not want); how will treatment affect my ability to function independently, and is that important to me?   Also ask yourself; how comfortable do I want to be and where do I want to be?   These are all important questions we need to ask ourselves.

Advance Care Directives are the key to making sure that your voice is heard, and that your choices are carried out. Having Advance Care Directives in place eliminates your family member’s having to make the difficult decisions at a time of crisis. For more detailed information on this topic, visit my blog on Advance Care Directives.

Far too often, individuals who should be receiving hospice care are not receiving it. The most common reason is the belief that “once I am on hospice, I am going to die”.  I often hear people say “my loved one went on hospice and died the next day” but the reason that sometimes happens is because they waited too long to get on to hospice initially. The truth is that people on hospice live a longer and have a better quality of life than those who do not receive care. Individuals can be on hospice for 6 months or longer, depending upon their condition. Hospice also provides a variety of equipment, supplies, medications, and support to make patient’s lives better!

Today I would like to review the most common obstacles in accepting hospice care and how to overcome them:

Fear

Fear of dying or losing a loved one is the number one fear in America. Unfortunately, this fear can be crippling and cause individuals to not make proactive decisions about end of life care.

The most common concerns are:

 – Will I be in pain?

 – If I accept hospice care, am I giving up?

 – What will happen to my family, my pet, etc.?

 – Did I live a purposeful life?

 – Will I die alone?

 – Spiritual concerns…is there anything after our earthly existence?

Having open conversations with individuals to pinpoint what they are afraid of, and addressing these concerns, can help to break down the wall of fear.

 Lack of Communication Between Health Care Providers and Patients

Some health care providers are uncomfortable having conversations with their patients about end of life, or are focused on offering treatment alternatives. Additionally, it can be difficult for a patient to understand what the physician is telling them. Studies show that 50% of patients reported not having a clear understating of terminology, their diagnosis, condition, treatment options, and outcomes of treatment. Accompanying loved ones to appointments, asking direct questions, and clarifying information can go a long way in clearing up any misconceptions and make the decision process easier.

Concerns about cost:

Many people do not understand how their insurance coverage works, or what is covered under their plan. Most Medicare/ Medicaid plans cover hospice care as long as the provider is Medicare/Medicaid approved. Many private insurance plans also cover the cost of hospice care. Insurance can be difficult to navigate. Fortunately, hospice assigns a social worker and case manager to help answer all of your questions. They can also work to find additional resources to help cover your needs.

Never be afraid to ask questions or voice your concerns. Remember, you only get one chance at the end of life and it should be a physically, emotionally, and spiritually comfortable experience.

Pain management at the end of life can be confusing and scary. There are a lot of misconceptions about pain medications. Understanding the different types of pain, medications, and how the medications work is the key to successful pain management. The following are some common questions associated with pain and pain management:

What are the two most common types of pain during end of life?

Somatic Pain:

Generally a deep pain coming from within in the skeletal structures, muscles, tendons. It can be sharp, cramping, or aching pain. Somatic pain is generally treated with narcotic medications.

Nerve Pain:

Nerve paid affects the nerves that carry sensation to the brain. It is generally described as a burning pain. It is very different from Somatic pain and is treated with completely different medications. It is more common with patients who are being treated with chemotherapy. Narcotic medications do not relieve nerve pain.

It can be helpful to keep a log book documenting the type of discomfort someone is experiencing, the level of pain (1-10), and when it is happening.

How will I get pain medications at the end of life?

If you are receiving hospice services at home, they will provide you with a comfort kit that includes the most common medications used during end of life. I recommend having one main caregiver familiarize themselves with the medications, including how and when to use them. Your loved ones nurse will schedule time with you to explain how to administer the medications to ease your concerns.

The medications are color coded to help eliminate confusion. Never be afraid to ask questions so that you feel comfortable with administering medications to your loved one.

How do I keep track of when my loved one is getting medication:

Keep a log book next to the bed, and document when medication was give, how much was given, and its effect. This is an important tool for the nurse as it helps him/her to evaluate the medications, dosage, and frequency necessary to control pain. It is also helpful if the main caregiver is not present when medication needs to be given.

The goal is to keep the pain level at a 4 or below. It is much easier to control pain before it gets too high. Once the pain level reaches an intolerable point, it takes more medication to reach a level of comfort. Pain medication given in the correct dosage provides individuals with a better quality of life.

Can I get addicted to my pain medication?

The short answer is no. People who are in pain do not get addicted to their pain medication at the end of life. The brain recognizes pain and works to control it and taking medication does not provide a feeling of euphoria.

What if I had a previous problem with addiction?

Even if someone has had a previous experience with addiction, they should not be in pain at the end of life. Be honest with your hospice nurse, and they will work with you to carefully control the amount of medication being given.

If someone else in the home is experiencing a problem with addiction, the medication can be kept in a secure location such as a locked box.

Other things to keep in mind is that pain medication can cause constipation. I recommend keeping a log book of your loved one’s bowel movements. Medication can be given to relive constipation before it becomes a problem. Pain medication can also cause dizziness. In order to prevent falls, always instruct your loved ones to get up slowly and make sure they do not feel lightheaded before moving around.

Always remember to say: I love you, thank you, forgive me, I forgive you, I will miss you. We only have one chance at the end of life, so make every moment count!

  WHAT THEY DO/ DON’T DO

THE IMPOTANCE OF KNOWING THE DIFFERENCE

Let me begin by saying that hospice is an invaluable service with a focus on providing quality care and comfort for individuals facing an end-of-life diagnosis. Hospice has access to durable medical equipment (beds, commodes, specialized wheelchairs, etc.) and medications that are not available through a pharmacy and are delivered directly to your home.

Unfortunately, hospice is often misunderstood. In this post I would like to answer some of the most commonly asked questions about hospice care:

 Is hospice only for people in their final days?

No, the fact is that someone can be on hospice for 6 months or longer depending upon the diagnosis and progression of the disease. Studies show that people on hospice live 12-15% longer and have a better quality of life.

Who decides when hospice is needed?

Patients, family, and physicians make this decision together. Hospice is generally called in when aggressive or life sustaining treatment is no longer a choice or option for the patient. In order for someone to be eligible for hospice, they do need to meet insurance and Medicare guidelines. It’s never too early to request an evaluation.

What type of home-hospice care will the patient receive?

The patient will be assigned a Nurse Case Manager. He or she will assign a nurse who will visit weekly and an aide who generally will visit 2-5 days a week for an average of 30 -45 mins per visit. The determination is made depending upon the needs of the patient, and can be adjusted if necessary. Patients are also assigned a social worker, spiritual support, and a volunteer (when appropriate).

Will I receive 24 hour care in my home?

No, although hospice nurses are on call 24 hours a day, 7 days a week, they do not stay at your home. The main goal of hospice is to minimize pain, manage symptoms, provide emotional support and educate the family caregiver. Hospice houses (in patient) do offer 24 hour a day care.

When choosing hospice, it’s important to have open and clear conversations about your expectations for care, pain management, and support. Don’t be afraid to ask questions as you are not asking anything that they have not heard before. In my experience, the nurses, doctors and health aides are dedicated professionals who take pride in what they do.

Please feel free to reach out to me if you are in need of additional guidance.

The Benefits of Music at the End of Life

Whether you grew up in the roaring 20’s listening to Duke Ellington and Louis Armstrong; the 30’s swinging to Glen Miller and crooning to the soulful voice of Bing Crosby; the 40’s with the gospel voice of Sister Rosetta Tharpe; or the 60’s enjoying the growing popularity of rock & roll and the Beatles, I hope that we can all agree that music left its mark on our memories.

There is a reason why you can’t remember what you ate for dinner last night, but you do remember all the words to your favorite song or the one that you danced to on your wedding day. These are happy moments that are embedded in out memory. Music is an important part of our human existence and something that we can all relate to on some level.

Music therapy has been popular within the memory care field for quite some time and has been proven to help stimulate memory and emotion.

Studies prove that music can relieve anxiety, agitation, and boost your mood. It can also help to lessen pain, promote deeper breathing, and help to facilitate communication and emotional expression. There is a relatively new interest in the benefits of music during the end of life experience. Hearing is the last sense to leave us so it makes sense that playing a loved ones favorite music is just what the doctor ordered (so to speak).

As an example, I had a lovely lady who was an avid ballroom dancer. During her end of life journey she would become very agitated but when I put on Glen Miller’s “Moonlight Serenade”, a peaceful look would come over her face. As another example, I sat vigil with a gentlemen who passed away peacefully while listening to “I saw the Light” by Hank Williams.

When choosing what music to play, there are a few things to keep in mind. It needs to be significant to the person, with the goal of meeting an emotional or spiritual need. These choices can be discussed early-on to eliminate any guesswork (see my previous blog about open conversations).

One other thing to keep in mind is to remember to play the music at a reasonable level. Blaring music is not comforting, even to those of us who grew up rocking to the Rolling Stones!

As always, don’t forget to say things like “I love you”, “thank you”, I forgive you”, “please forgive me”, and “I will miss you”.                                               

The holidays are upon us, and everyone is ready to make merry! But for some people who are suffering the loss of a loved one, the holidays can be anything but cheerful. We all have good intentions by inviting someone over to “cheer them up”, but this offer can be uncomfortable for everyone. So, what do we do?

Here are some tips if you are trying to offer someone comfort:

• Start by acknowledging that the person is suffering a loss. Make statements like “I know you are sad, but we would love to see you if you are feeling up to it” this allows someone to feel your love, but decline gracefully
• Surprise someone with some homemade goodies and a note “thinking of you”
• Tell them you are there if they need you

If you are grieving:

• Let people know in advance how you prefer to spend the holiday say something like “I just want to have a quiet holiday”. People will understand
•  Keep up family traditions, or start a new one
• Make a donation in your loved ones name
• Cook your loved ones favorite meal
• Ask for help if you need it
• Choose your favorite activity and do it! Go for a walk, hike, or bike ride
• Spend time with your pet. Remember animals grieve too, you can find comfort in each other.

Whatever you decide, be kind to yourself, and embrace you emotions.

Honoring an individual’s choices

 There are many ways to honor someone’s choices when it comes to End of Life. One of the most important is to have documents in place that clearly outline treatment choices. Today’s blog deals specifically with the MOLST form

 A MOLST form is a medical order that communicates the patient’s wishes and preferences about life sustaining treatment to his/ her health care providers. It is based on a person’s right to information with regard to the risks and benefits of life-sustaining treatment based upon their current condition, and to make informed choices to either accept or refuse life-sustaining treatment.

A MOLST is both a medical document and a personal care planning document. It must be signed by a clinician and the patient to be valid. Clinicians that have the authority to sign a MOLST form are physicians, nurse practitioners, and physicians’ assistants.

The MOLST form is intended for individuals facing a serious/ terminal illness.

The process is a fairly simple one:

• A clinician, patient, or patient advocate initiate a conversation about CPR and other life-sustaining treatments. They are given information regarding all the possible risks, benefits, and expected outcomes based upon their current health condition.
• The patient chooses what they do, and do not want for care.
• The patient and the clinician record the choices on the MOLST form. There are two sides of the form. The choice can be made to fill out just the front or both the front and back sides of the form.
• The clinician and the patient sign the form and it goes into effect immediately.
• The form stays with the patient, a copy is placed in the medical chart, and copies can be given to the family. The original MOLST form travels with the patient to any treatment setting
• Changes can be made to the form over time to reflect the individual current condition.
• Please keep in mind that if the patient is declared to lack the capacity to make health care decisions, the patients appointed health care agent has the authority to make medical care decisions and sign the MOLST form on his/her behalf. It is important to choose your health care agent carefully. The health care agent should have a clear understanding of your condition and have your best interests at heart.
• To learn more about MOLST forms go to: www.molst-ma.org

End of life is not just about the patient, in order for the journey to be peaceful it requires the family and loved ones to take an active role in the process.

In today’s society with so much fear and anxiety attached to the dying, it is not uncommon for people to spend most of their time trying to protect one another from the inevitable. When this happens an opportunity is missed to say what you really feel.

I have had numerous experiences when I have been asked not to tell someone they were on hospice, and then have the person on hospice ask me not to tell the family they are dying.

In my experience people want to talk about their end of life, they will often send subtle clues to family members and loved ones in an attempt to open up a dialogue. It is up to the family to be ready to listen and support the person when this happens.

We can achieve this goal by listening with an open heart and having honest and loving conversations about the end of life with family members and friends before there is a crisis. This discussion goes beyond estate planning and wills (although these are import topics as well). Facilitating a life review is a good start, ask people to share their life stories, successes, best day of their life, and even failures.

 It is also important to ask the individual what will bring them comfort at their end of life with regards to interventions to prolong life, comfort measures, music requests, and who will be there at the bedside. Giving patients autonomy and control is a key element in a peaceful end of life journey.

Remember to say I love you, thank you, forgive me, I forgive you, and I will miss you.

We only get one chance at end of life, the objective is to make it a peaceful dignified experience.