KNOWING THE PATIENT – PERSON CENTERED CARE

Knowing the patient?  We never knew Mabel.

Mabel died today. Minutes later, a nurse hurried down the hall carrying two old books. She stopped and excitedly showed me what the staff found when they cleaned Mabel’s room. She held up books on physics. “Mabel wrote them! Can you believe that? I never knew she wrote anything.”

We had cared for Mabel for six years, but none of our staff knew she had written any books. When she came to us, Mabel was already afflicted with Alzheimer disease. We learned later, after her death, that Mabel had been a prominent physicist.

As I listened to the nurse, I thought. Wouldn’t it have been wonderful if Mabel could have enjoyed our expressions of respect, awe, and admiration? Now it was too late.

That true story isn’t an isolated instance. Too often the nursing home staff learns information about residents from reading the obituaries. The individual life stories never make it to direct care staff, even if it had been told to social workers on admission. The story had been diluted to minimum facts on a fill-in sheet at the back of the chart under the social service tab.

Book excerpt from: Please Get To Know Me – Aging with Dignity and Relevance

In this time of cost cutting, healthcare workers managing more than one job to make ends meet, and the multitude of problems with patients requiring more care, it is hard to get to know the patient.  This book provides the information for anyone, friend or family member to become actively involved in a patient’s care.  When there is a patient and a caregiver involved, it is the family who knows the patient and can provide that bridge between the two.

Click on the picture of the book, on this page, learn how to become part of the team creating person centered care for your love one.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

THE HIGH COST OF DEMENTIA TO SOCIETY, FAMILIES AND MOST OF ALL TO THE INDIVIDUAL

There is a high cost of dementia both to society as well as the individual and family. The cost to society through Medicare payments is not only high it is skyrocketing. Currently 1 in every 5 dollars spent is on elderly with dementia. The per-person cost to Medicare for taking care of persons with dementia is 19 times higher than the average per-person cost for all other seniors together. The total spending by families is close to the same as the government spends.

The cost of dementia to society:

  • Alzheimer’s is the most expensive condition in the nation. In 2014 the cost to Medicare and Medicaid was $150 billion with an estimated total cost of $214 billion. Estimates are that 2050 costs will escalate to $1.2 trillion dollars.
  • In 2014 an estimated 5.2 million Americans had dementia.
  • Of the over 5 million people with dementia age 65 and older, 3.2 million are women and 1.8 million are men.

The cost of dementia to families:

  • In 2013, 15.5 million friends and family provided 17.7 billion hours of unpaid care to those with dementia. That care was valued at $220.2 billion dollars.
  • The emotional stress of care-giving for someone with dementia is so high it takes a devastating physical toll. Dementia caregivers, had $9.3 billion dollars in healthcare costs, of their own in 2013.
  • Women are more likely to be caregivers for those with dementia, more than 3 in 5 unpaid caregivers are women.
  • Because of their caregiving duties, nearly 19 percent of women caregivers had to quit work. This causes future consequences, when those women once again want to join the workforce.

The total cost to Medicare is $37 billion annually, and estimated to be $36 billion of cost to families. As staggering as these numbers are, the cost to the individual with dementia cannot be measured. The loss of memory, inability to concentrate, loss of social skills, deterioration in personal hygiene and appearance, difficulty communicating, disorientation and more, how are these costs calculated?

The high cost of dementia is shouldered by everyone.

Virginia Garberding RN

Certified in Gerontology and restorative Nursing

WHY DOES AN ELDERLY PERSON NEED A NURSING HOME/REHAB FACILITY?

Why do people need to go to nursing home or rehab facility?

  • they need nursing help with bathing, eating, dressing, or walking
  • they have just come out of the hospital and are not ready to go home
  • they are unsafe and can no longer take care of themselves
  • they have dementia and and forget how to take care of themselves

Why do these people need so much assistance?

It may be for a medical condition that they are recovering from, or the nursing facility has the equipment or human assistance they need to recover. It can be that they are recovering from an infection and need medications better delivered at a nursing facility. It maybe that they are just too weak to live independently, or they are frail due to advanced age. The elder with poor vision can have a hard time shaving, dressing, even difficulty eating independently much less shopping for food and meal preparation.

The elder with dementia may not even remember how take care of himself, even how to brush his teeth:

  • he may not remember that he needs to brush his teeth
  • not remember that he hasn’t brushed his teeth
  • not remember what equipment he needs to brush his teeth
  • not remember how to brush his teeth, what to do first and what to do next – the entire process of brushing teeth

How much should you help a person with dementia?

“Why do you make my wife brush her own hair?” a husband asks the nursing assistant. “Isn’t that your job?”

  • the confused elder feels better about themselves if they do as much of their own care as is possible
  • the elder who participate in their own care remain healthier and stronger
  • the job of the nursing staff is to teach the confused elder how to take care of themselves
  • it is the responsibility of everyone in a nursing community to help their patients be as independent as possible
  • always support ability not disability, provide just as much assistance as the person needs

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

DEMENTIA AND THE COMFORT OF FAMILIAR WORDS

After Vera first entered the nursing home her daughter’s visit revolved around her mother’s physical progress. Vera had a debilitating stroke and was making very slow progress. It became apparent that Vera would always require the care provided by 24 hour caregivers. So now her daughter’s focus shifted to the quality of her weekly visits.

The daughter brought favorite food items, books to read together, and her Mom’s request – her hymn book. The nursing staff got used to hearing the mother and daughter singing together on Sunday afternoons.  As the years went by Vera was declining in so many ways. Those times together changed as Vera could no longer follow social conversations or books read to her.

But those hymns, those words sung so many times over so many years, those words remained and gave comfort. At the end of Vera’s life she was almost blind, hadn’t walked in the 14 years she spent in the nursing community, and she was confused most of the time as to where she was and what was going on around her. Yet, hearing those so familiar words gave comfort and yes gave joy.

For Vera, this Thanksgiving:

Come, ye thankful people, come – raise the song of Harvest home, – All be safely gathered in, –  Ere the winter storms begin, –  God, our maker, doth provide, – For our wants to be supplied, – Come to God’s own temple come, – Raise the song of Harvest home.

If you no longer have your Vera to read comforting words to, you can find a Vera in your neighborhood nursing home. Volunteer to read.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

 

HOW TO CHOOSE A NURSING HOME FOR A PERSON WITH DEMENTIA Part III

A term that has gone out of use in the nursing home community is “custodial care,” and with good reason. The current term for care is “person centered care.” These terms are the difference between living and existing.

With custodial care you are existing but do people only want to exist? Existing means to; be present, to be alive, to be in existence, and to be surviving. Custodial care meant that the nursing home was protecting the elderly. They were charged with safe keeping and at times total guardianship of the elderly in their care. As was frequently said at that time, patients were kept “clean, dry and visitor ready.”

With time, thinking changed in the nursing home community, and people started to think about how they would like to be taken care of. Being clean, dry and visitor ready didn’t seem all that appealing. Now the thought is, if you look at all of your favorite activities over a period of time, and realize that you will never again do those things, how would you feel?

Take Ann who is now in her early seventies. Ann loves to cook, especially she likes to make soup. She makes two different soups every week. She likes to bake, making her favorite pumpkin muffins often, freezing them and eating them infrequently for a treat. Ann was a school teacher for many years and now works as a teacher’s assistant three times a week. She really enjoys staying in touch with the school atmosphere, other teachers and of course the children. Ann loves music, she sings in her church’s praise choir and she enjoys playing the piano. Ann also loves to knit and does her own small art projects making bookmarks as gifts for friends. She enjoys getting together with family and friends as often as she can.

Going to a nursing home in the future where she would only exist wouldn’t work for Ann. Living compared to exiting means; continuing your life style, maintaining your habits and activities, remaining active and relevant through being busy. Having dementia or not Ann would want to continue to; enjoy being with children, having her favorite foods, doing art, listening to music, being social, and remain connected to her faith.

Finding that nursing home that understands “person centered care,” and the concept of living over existing, is the best choice for a nursing home, for a person with dementia.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

PERSON CENTERED CAREGIVING, MEANS HAVING A RELATIONSHIP

Person centered care means not only knowing an elderly person you are taking care of but knowing them so well that you have a relationship. When two people are in a relationship they know so many small things about the other. What are the elder’s favorite foods, drinks, as well as what does she really dislike. What are her favorite activities and what activities can she live without. Who are her favorite people and having easy access to these people so that you can always reach them for her.

Person centered care-giving means the control, is always with the elder. Having control, means giving the elder choices all day long. At every interaction, whether choosing what to wear in the morning, what to have for breakfast or where to go for a walk. Letting the elder know that you take their concerns first over any chore or task you need to do.

Knowing the elder’s usual routine, is she an early riser or likes to sleep in, makes all the difference. I took care of Carl who was difficult to say the least. He seemed to wake up grumpy and stayed that way all day. I was just about ready to give up, when his daughter shared that her mother had brought Carl a cup of coffee in bed every morning all their married life. Knowing this was the definition of, person centered care for Carl.

Bringing Carl his cup of coffee in bed made all the difference to him. This now was his routine, and he started the day happy, gone was grumpy Carl. The family is always the bridge between the elder and the caregiver. The family knows those seemingly small things that make up person centered care, that don’t turn out to be small at all.

Letting someone know that they are more important, and spending time with them is more important than any chore, is empowering to the elder. It puts me in mind of a poem found on stitched samplers and framed in babe’s rooms. It starts out “cleaning and scrubbing can wait till tomorrow – quiet down cobwebs, dust go to sleep”, (my tweak) Grandma needs me now and Grandma won’t keep.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

8 QUESTIONS TO ASK WHEN CAREGIVING FOR THE PERSON WITH DEMENTIA AND DIFFICULT BEHAVIORS

The person with dementia no longer reacts the way they used to, many times resulting in problem behaviors. When you have identified a problem behavior, which can be anything from the elder spitting, to striking out at a caregiver, or even becoming sexually inappropriate, start with identifying exactly what is happening.

8 Steps to understanding difficult behaviors in the person with dementia:

  1. Identify the problem or behavior. Make sure you are clear as to what the problem is, and whose problem is it. In the case of the elder with dementia who spits; it is embarrassing, someone has to clean it up, and many times it is hard to find a caregiver for the elder.
  2. Identify when this behavior occurs. Does this behavior only happen during times of direct care? Such as the elder who strikes out during times of dressing, bathing, or brushing teeth.
  3. Identify how often this behavior happens. Does this behavior only happen occasionally, as during a large holiday get together? Does this behavior happen only later in the day when the elder is tired?
  4. Identify how long the behavior lasts. Is this behavior of short duration, and once the incident is over it is quickly forgotten by the elder?
  5. Identify what is going on in the environment when the behavior happens. Is the environment understandable to the elder? Remember the elder with dementia needs a time of transition between activities. He can no longer just switch from one conversation to another, or do several things at the same time such as eating and watching TV.
  6. Identify who is present when the behavior happens. Does someone present tend to startle or surprise the elder? Does someone seem to not know how to approach the elder? Is someone asking a lot of questions the elder is no longer able to understand? Does someone have expectations of the elder that they are no longer able to meet? Does someone present seem to be critical of the elder.
  7. Identify how intense the behavior is. Is this behavior of such intensity that is scares the elder as well as all who are present?
  8. Identify if there is more than one thing contributing to the problem. Especially if the elder has been having trouble sleeping and may be suffering from sleep deprivation. If the elder’s behavior becomes more difficult in the late afternoon, see if the elder has an problem with oxygen deprivation. Many elders who are more agitated later in the day may benefit from a sleep study.

Finding out what happened right before, or what is happening during the behavior, is of the most importance, when care giving for the person with dementia.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

WHY YOU DON’T ARGUE WITH A PERSON WITH DEMENTIA OR DELUSIONS

The elderly person with dementia, who has a persistent fixed incorrect idea or delusion, is literally unable to change their mind. The idea might be harmless, as in the case of the elderly woman who insisted she was always on a train. Or it might be dangerous as the person who is insisting he has to leave and go to work, when he hasn’t worked for many years. Harmless or not, these ideas frighten the family or caregiver because it demonstrates irrational thinking.  Using rational explanations or arguing doesn’t work when the person is unable to change their mind.

5 ways to address delusions without arguing:

  1. Let it go if at all possible. If the idea is not dangerous, doesn’t bother the person or others, let it go.
  2. If the idea or delusion is frightening, such as the woman who thought people were living on her patio, give reassuring , comforting words. “I am here and will stay with you,” while you use a distracting activity.
  3. A delusion might be an expression of some fear. Look to the environment. Are there shadows, do you need more light, are curtain or shades open at night creating reflections on a window?
  4. Support the feelings the person expresses, not the delusion.
  5. Ask the person to show you what they see. The shadow on a wall, when reality is distorted, may become a ghost to the confused.

Many delusions are just plain hurtful, as with the spouse who is no longer recognized and is accused of being an impostor. Some delusions are very embarrassing for the family, and require understanding and the education of others.  Well meaning friends and acquaintances may intercede and begin arguing the irrational  idea or delusion. Look at this as an opportunity to educate other people, so that they may support you, in creating your plan of care for this person.

When caring for the individual with irrational ideas, you never argue these thoughts away.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

DEMENTIA CARE – DECORATING FOR DEMENTIA – CREATING A SMART ENVIRONMENT

Lets face it we cannot get away from environment.  We are always in some kind of environment, but is it a healthy environment or troublesome environment? And for the person with dementia many things we take for granted in the environment are unhealthy as well as troublesome. These are environmental stressers that the person with dementia either hears, sees, or think they see.

Hearing stressors, are anything that is too loud. This can be the rattle and clink of utensils in a restaurant or even the voices when several people are talking at the same time, at the next table.  Anything that causes constant noise, like the TV or radio.  It will also be things that cause sporadic loud noises like a vacuum or landscapers.

A hearing stressor can also be when the person, who is trying to communicate with the confused person, just talks too fast. If the person is trying to understand, and can’t even catch the words, trying so hard will be stressful. And creates an environmental stress, where the person just seems to want to get away.

Things you commonly see in an environment can be very stressful for the confused person. When a person with advanced dementia looks at a shiny floor, it can appear as if there is water on the floor. Or even worse, that there is ice on the floor. A dark area of a carpet or tile can look like there is a big hole in the floor. Another frequent problem with flooring is small patterns. A carpet with obvious patterns will look like there is something on the floor. Many an elderly person has fallen trying to pick up something that wasn’t there.

The demented person does need contrast in color to be able to see the difference in surfaces. In a bathroom, if the tile floor is solid white and the toilet white, the person will have difficulty locating the toilet. He just doesn’t see white on white. In the same way when eating, a white plate on a white table, needs a colored place mat under the plate for the person to see it.

Keep this in mind, when walking around the house, think of contrast in doorways and furniture compared to wall color as well as floor color. Using the environment for great dementia care.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

6 REASONS THE BEST CAREGIVER TAKES THE TIME TO DEVELOP TRUST

In 1950, Erikson talked about the basic concepts of trust vs mistrust in the development of an infant. This led to the concepts of patients having trust in their nurse, that also implies, someone they can rely on. The person caring for them that they have confidence in for continuous care, the person that they trust, and who gives them hope.

When there is a trusting relationship:

  • the patient is more likely to share information with the caregiver.
  • the patient is going to be more willing to cooperate with treatment.
  • the patient demonstrates that she knows the caregiver has her best interest at heart.
  • the patient who trusts will have decreased negative physical concerns.
  • the patient who trusts will experience fewer behavioral problems.
  • the patient will experience less stress.

This is not a social relationship due to the fact that the focus is always on the patient not the caregiver. The caregiver doesn’t share their personal problems with the patient. But, rather focuses their attention on the patient and the patient’s needs.

Listen, show and tell, to develop trust. Show your concern and respect for the patient. Show concern by being very sensitive to pain, discomfort, hunger and thirst. Show respect by being very sensitive using the patients preferred name, awareness of the patient’s age and to privacy issues. Listen to the patient, and let her know that you are taking her thoughts and ideas seriously. And, tell the patient often that you will be there, reassure that you will take care of her, tell her that you want her to be comfortable and happy. Tell her, that it means a lot to you to be able to take care of her.

When the relationship is well established it can certainly become social as the patient and caregiver bond through activities, shared laughs and experiences. But the first work of the caregiver is to build trust. The caregiver who is either unwilling or unable to put another person first, and develop that trust, will never be that best caregiver.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing