Hospice Teaches Me Transitions Are Life

Transitions happen every day and are a normal part of our lives. Every person must learn to manage transitions, as a natural part of being a human being. Transitions include not just events that we would normally think of as grief-provoking, like losing a job, losing a pet, experiencing houselessness or personal tragedy, or even a serious illness, injury or the end of life.

Transitions also include any movement in one’s life from one situation to another, some of which bring great joy, like the birth of a child, a new marriage, buying a home, adopting a pet, meeting a friend. However, transitions can lead to emotional or psychological distress, even when the event is anticipated, wanted, and planned.

As a hospice social worker, transitions often come in the form of preparation for death, the end of life, and grief/loss of the patient whose life is ending, as well as those loved ones left behind. Each day I get to work with those facing these life transitions. How we cope with these changes determines the ultimate key to our happiness and our ability to acclimate and adapt to a changing life and being in touch with “the inner self.”

It can be tempting to dive into a new job without laying the groundwork for what the new job entails. It can also be tempting to dive under the covers after a hard day at work or an emotional evening with a spouse. It can feel exciting to rearrange your furniture to change things up or to accommodate new needs in your space.

Without appropriate forethought, however, even these transitions, which seem small and unimportant in the grand scheme of life, can leave us floating and losing tune with our inner need for structure. Having spent over sixteen years working in hospice, you might think I have this down. I don’t! Every transition needs to be thought-out, especially when I am the first line of defense to help patients and their families come to terms with a patients’ mortality; the ultimate reality. Often, we think about these major life transitions.

“Why am I doing this?” “Why is this happening?” Many people go about their day with little thought to the smaller transitions. I have found that these changes can have huge anxiety-provoking and stressful impacts on our lives. So what can we do? Prepare for transitions we can anticipate and take our time adjusting to the sudden abruptions of daily life. It’s easier to say than to practice, but it is far better to practice than to be taken unaware and be stymied by life’s little curveballs. I’ve spoken about my grandmother before and she would say, “Practice.” Even the Boy Scouts say, “Be prepared.”

Hospice has taught me to go with the flow, not to fight against the stream of nature, and to be myself. The cliché,’ “When life gives you lemons, make lemonade,” has a great deal of merit. Allowing yourself to feel your innermost thoughts and feelings can be hard but it is vital to have a successful relationship with change. Transitions, while often difficult, cannot be avoided or denied. Resistance is futile. Transitions are life; becoming a new you. Being a hospice social worker has taught me this.

The poet, Nikki Giovanni says, “A lot of people resist transition and therefore never allow themselves to enjoy who they are. Embrace the change, no matter what it is; once you do, you can learn about the new world you’re in and take advantage of it.”

Are We Afraid of Developing Technology for the Elderly

I work for a hospice program providing palliative care which means we attend to the emotional and spiritual needs of terminally ill patients at an inpatient facility or at the patient’s home, and I see lots of people near the end of their life. Some of them are too lethargic to use an iPad, but many are not.

birdbeard-300x300Though all of my clients are dying, they are otherwise able to function normally for a person their age. Those who are not lethargic or in their last days often tell me how bored they are!

They speak about their inability to find anything that entertains them. So, I did a little research on the subject thinking “Well maybe a computer for older folks might help.” Turns out there are some, the options are not great, and I have yet to see one in an assisted living facility.

So why has Apple not attempted to make iPad adaptable to Seniors’ needs?

Personally, I want to be able to browse the internet when I am seventy, and I want to be able to keep up with the news when I have arthritis and can’t swipe properly. Below are some reasons why we don’t have it and why we are going to need it.

Generational Gap

The affordable personal computer came out in the 80’s which means those who grew up with computers are now just entering their early to mid 40’s. To everyone else, computers were new and confusing.  However, this doesn’t excuse the lack of technology for those who are older, but it does help to explain the lack of attention to this market.

Infantilization

In-fant-til-ize-a-tion: To treat or condescend as if still a young child

Would you let a baby play with your expensive iPhone? If the answer is yes, you have more money than I do. Most people are afraid their child will break their expensive toy. They are not wrong either most children will. We assume the same of older adults, that they will either break it out of frustration or will not be able to comprehend its use. Neither is true. There are many older adults who know how and enjoy using computers to entertain themselves

Denial

Likely the worst offender, we refuse to make these adaptations to technology because doing so would be admitting our own mortality. It would require acknowledgment that we will grow old and may eventually need these devices ourselves. Once we can admit we are growing older as a society more and more of these devices will be present.

That’s it for now, but I can’t wait for the Angry Bird’s senior edition to come out. In the comments below tell me about what you want on your computer when you are older!

A Gentle Approach to Dementia for Care Providers

dementia-patient

When I first became a hospice social worker, I was stunned to realize more than half of my patients were diagnosed with advanced dementia. I had been under the assumption that I would be working with mostly people with cancer or other chronic illnesses such as Chronic Obstructive Pulmonary Disease (COPD) and Congestive Heart Failure (CHF). While many of my patients have suffered from those maladies in the latter category, the prevalence of dementia is rather high. After seven years as a social worker “in the trenches,” I would have to learn a whole new skill set if I was to survive and thrive in hospice.

Most of these patients eventually end up in nursing facilities as the burden of their care becomes too great for family members to keep them at home. In visiting such facilities, I have came to find that many more people than just those in hospice were in various stages of dementia. It is a fascinating phenomenon with several different causes, but I have developed my own way of working with these individuals based on their current level of capability to engage interpersonally. As a result, I have identify several areas of concern regarding the treatment elderly patients receive from care providers and other medical professionals.

Aside from the ways dementia affects different people on a physical level which can include the ability to ambulate, muscle contraction, etc., the mental symptoms can range from extreme forgetfulness to devastating interpersonal impairment. Some of the most pleasant conversations of my day are sincerely answering the same three questions over and over again for an hour with the same patients, but they have little to no short term memory.

I have also spent a lot of time in constant redirection and assurance with people that can no longer recognize relatives with whom they have spent the last eighty years. I have seen these individuals coddling realistic looking baby dolls as part of their care and have played music for people that are nearly catatonic, only to watch their bodies come alive with movement at the faint and automatic memory of their favorite songs, something that blessedly seems to remain long after their ability to speak has faded. I have heard ninety year old patients insist that their mother had just been to visit them or that their young children were running around the facility.

The common thread with which I approach these wounded patients is a measured gentleness that preserves their dignity and, to the greatest possible degree, facilitates their comfort in the immediate moment. For most of these people the present moment is all they have. Thus my preferred method is to redirect them in conversation and to by no means challenge their obviously factually incorrect assertions with harsh reality.

If an elderly woman whose mother has obviously passed insists that she must know when (her mother) will be visiting, I will respond that she’ll probably be around later. I have witnessed facility nurses and aides confronting such patients with the fact that their mother will not be visiting because “she’s dead,” repeating this every time the person asks. I will just as gently take such workers aside and explain that they are effectively breaking the news of the death of a patient’s loved one several times a day, each instance with its own accompanying trauma.

Another of my concerns is when I see people with dementia being treated like children because “they don’t know any better.” Almost every culture in the East has, currently or at some time in their history, had a practice of revering their elders simply for the fact they have lived longer and accrued more life experience than most.

Watching people with little wisdom earned through the kind of adversity their patients have faced treat said individuals as mere nuisances to be quieted makes me sad to say the least. I labor under the belief that my patients are people, whether they be completely lucid and able to participate in conversation or if they are unresponsive. As such, I also believe that each of these persons have the right to my full presence and attention and that, while their minds may have been rendered functionally impaired, their spirits are perfectly intact and engaging with mine. In short, I am no better than these people just because my mind is still functional.

Lastly, watching the pain endured by the family members of such patients is nearly unbearable. They faithfully and dutifully make their regular visits in the vain hope that they will see even the briefest signs of recognition in the eyes of their loved ones, only to inevitably leave disappointed and heartbroken. They deserve to know that their family members are being treated with the highest level of respect and dignity and with a kindliness and gentleness reserved for the most vulnerable amongst us.

Please keep these concerns in mind the next time you encounter a person with dementia. They are locked in a special kind of hell that I hope you and I will never have to experience.

Practical Palliative Care Resources for Patients and Family Caregivers

Caritas House headquarters of Harris HospisCare (Photo credit: Wikipedia)

Does your practice’s website include local or national resources that complement the professional medical services they provide?  One way to add value to the services and increase the efficiency of medical office visits is to provide palliative care resources that your patients and their caregivers can use to inform care decisions.

Many people are starting to hear the term palliative care in the media from care managers and from people they know.  Yet, national research indicates that most people are unfamiliar with the term or confuse it with only one type of palliative care – hospice. Unlike hospice, palliative care is available to anyone, regardless of his/her illness or condition or life expectancy.  Palliative care can be offered in conjunction with curative or life-extending care and is available in all care settings.

The California State University Institute for Palliative Care defines palliative care as care that improves quality of life for patients and families facing serious or chronic illness — whatever the diagnosis or prognosis. It prevents and relieves suffering by addressing pain as well as the physical, emotional, psychosocial and spiritual problems associated with serious and chronic conditions.

Palliative care complements the care that your patients receive from you and acute care providers and can help with care transitions and prevent costly ER visits or (re)hospitalizations, by holistically addressing pain and symptoms while supporting family caregivers. Simply adding some or all of these resources can help to educate your patients about palliative care and communicate your support for this emerging aspect of healthcare.

Palliative Care Resources:

  • CSU Institute for Palliative Care –
  • Get Palliative Care –
  • Center to Advance Palliative Care –
  • Caring Connections – 
  • WebMD –
  • Department of Veterans Affairs –
  • Mayo Clinic –
  • National Cancer Institute –
  • Next Step in Care –

The CSU Institute for Palliative Care at California State University San Marcos

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