Ebenezer Blog - Ebenezer Cares

The role pets play in our health and happiness

6/18/2018

Have you ever noticed how snuggling and petting a dog, or giving a cat on your lap gentle strokes seems to create a sense of calm and wellbeing? Turns out, there is a scientific reason behind these good vibe feelings.

According to an article in TIME magazine and a 2015 Harris poll, "95% of owners think of their animal as a member of the family. About half buy them birthday presents. And it’s a two-way street. People who have pets tend to have lower blood pressure, heart rate and heart-disease risk than those who don’t. Those health boons may come from the extra exercise that playing and walking require, and the stress relief of having a steady best friend on hand.

Scientists are now digging up evidence that animals can also help improve mental health, even for people with challenging disorders. Though the studies are small, the benefits are impressive enough that clinical settings are opening their doors to animal-assisted interventions–pet therapy, in other words–used alongside conventional medicine.
The rise of animal therapy is backed by increasingly serious science showing that social support–a proven antidote to anxiety and loneliness–can come on four legs, not just two. Animals of many types can help calm stress, fear and anxiety in young children, the elderly and everyone in between."

That is why most Ebenezer locations welcome our furry friends along with their human counterparts to our senior living communities. We have witnessed the joy a dog can bring to the face of an elder, even a nonverbal, expressionless dementia resident. They suddenly light up and reach out for the dog. We have also seen animals bring together residents and help forge new friendships. It is a common denominator that people love - sharing funny and meaningful stories about their pets. As long as pets are well behaved/good neighbors - they help bring life into all our Ebenezer homes.

Until one has loved an animal a part of one's soul remains unawakened.

Responding to Repetitive Questions or Repetitive Behavioral Expressions

2/19/2018

When a person with dementia asks you a question for what seems like the 29th time in a row, how do you respond?
Have you found yourself saying (or almost saying) anything like this:

“Don’t you remember?”

“Not again! I already told you!”
“I’ve told you a hundred times already!”

You may have learned from experience that that those types of responses don’t get you very far. They simply serve to increase your own frustration and impatience as well as that of your loved one. Rather, try responding in a calm, reassuring voice, as though it is the very first time you have answered the question.

Physical changes in the brain can result in a person with dementia no longer being able to remember that s/he is repeating themselves. These changes also make it difficult for a person to stop a repetitive motion such as rubbing hands together, or tapping on a table. Anxiety and tension, (byproducts of the disorientation and memory loss of dementia) can translate themselves into repetitive motions or questions which others may experience as annoying.

Whatever a person with dementia does that appears “wrong” or “inappropriate” or “unnecessary” to our brains and our way of relating to the world is actually an expression of a need. That’s why I like the phrase “behavioral expression” so much better than the term “behavior” when referring to the challenges that can arise when someone lives with dementia. “Behavior” often implies judgment, that the person is being “bad ”, which encourages us to assume that if the person only tried a little harder, they could control that incessant tapping, stop asking those repeated questions, and avoid using those four letter words that they never used before! The fact is that the person could only exert control over those things if they could STOP having dementia. This is, alas, too much to ask.
We must have patience and compassion for the seriousness of a broken brain. It’s up to us whose brains are in better shape, who have better control over our actions and responses to others to take a deep breath…and focus on helping the person out with whatever need is making itself known, however it may be expressed.

A hungry person might ask “What’s for lunch?” over and over. For this person, giving them a piece of paper with the upcoming “menu” written down may satisfy the question. In addition, getting the person involved in some aspect of meal or table preparation might be an effective distraction.
If a person with dementia is in pain, they might rock, pace or otherwise move rhythmically to express their discomfort. We must be sensitive to the comfort–related needs of the person, and do what we can to alleviate them. Sometimes, giving a repetitive task like winding yarn or folding towels can be a comforting distraction for the person.

Sometimes people may be bored, craving a sense of purpose and meaning. Repetitive movement can be reflective of things the person used to enjoy doing on a regular basis. If your loved one asks you, “What do I do now?” they are in effect asking you to involve them in something that will give them a sense of pleasure, peace, or usefulness. Put something of interest in their hands. Ask them for help with a task. We all need to be of use. This does not stop when we get older or when we develop dementia. An inability to take initiative is usually part of the dementia progression. Do not assume that your loved one is beyond having interest in things that have been important to them. The person may be at a loss as to how to access or activate that interest. In that case, it falls to us to remind the person of their accomplishments and adapt past interests into activities they are able to enjoy now.

It is a good idea not to discuss plans with a person (appointments, visitors, outings) who has very short-term memory loss. Knowing an event too far ahead of time can cause extreme agitation (as well as, you guessed it, repeated questions) for a person with dementia. This tendency will vary, of course, person to person, but it is necessary to monitor and adapt to the changes as dementia progresses.

Sometimes the need expressed is an emotional one. The person may be fearful, sad, or feeling insecure. That emotion could come out as a repeated question or as a physical expression, i.e., pacing, as the person attempts to express what is inside. Listen for the emotion behind a person’s question or behavioral expression, and respond to that, i.e., “You seem worried. I’m right here if you need anything. “We will be together all day.”   Putting on soothing music that the person likes and using gentle touch may provide further reassurance.

If the person seems to need a hug, tell him or her that YOU need a hug, and they will very likely oblige you with one. Then they get to feel that they are giving you something that YOU need. We all feel better when that happens!

--Marysue Moses, Ebenezer Dimensions Program Coordinator

--Information in this post is partially based on material in Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White

What to Look for in a Memory Care Community

1/4/2018

Few processes are more stressful than deciding upon the best place to move a loved one when it is determined that a move to memory care is the best option. Keep in mind that when this decision needs to be made, it is often critically important, not only for the well-being of the person with dementia, but in order to maintain the health and safety of the family member who is their current care partner.
If you are in the process of making this potentially agonizing decision, here are some questions to ask yourself, and others, as you tour and consider various possibilities:
What does the environment feel like?

Is it cozy? Is the atmosphere comfortable and homelike?
How’s the temperature? Are there pleasant smells?
Are there items of interest on the wall to attract attention and engage the residents?
Is television on, with no one really engaged, or is there some soothing music happening if there is not a scheduled activity going on?
Do you see residents out and about, chatting together?
Do you see staff interacting warmly with residents?
Do residents seem calm and content, overall?
What sorts of interventions are tried here should a resident become upset? For example, is Aromatherapy in use? (see http://www.haaromatherapy.com/ to learn more)

What can you learn about the staff?

Are staff members trained in dementia care on a computer, or do they get plenty of in-person instruction?
How much training does the front-line staff get upon hire and yearly on different dementia topics?
Are staff warm and friendly towards visitors?
Do staff members seem to take their time around residents, or are they rushing?
If you have the opportunity, away from residents, ask a staff member, “What do you like about working with persons with dementia?”
Ask how staff members are trained to deal with challenging situations, such as a resident pounding on the door and wanting to leave? (Encouraging answers would include “We are trained to validate the need behind whatever the resident is feeling, to comfort, to reassure, and to redirect them to something that we know is meaningful or pleasurable for them” and “When possible, we take someone who wants to leave this part of the building for a short walk in another part of the building, or (weather permitting) even outside.”
What is the ratio of staff to residents? Is memory care currently full now? How many memory care residents will there be when it is full? (Does this sound like too big of a crowd for your loved one to manage well around?)

What is the level of activity and engagement?

Is there an activity staff person specifically assigned to the memory care community?
Are activities ever scheduled after supper? How about on the weekend? If you get an activities schedule, look to see if the weekend schedule is as full as the weekday schedule.
Ask to observe an activity. Note the level of engagement of the participants. Is the activity being done FOR the residents, or (preferably) is there lots of interaction and participation, because the activity is being done WITH the residents?
How often do staff engage residents during the down time they have between cares?
How much is music a regular part of the life of the community?
Are there any service projects being done?
Do Assisted Living residents and Memory Care residents ever come together and interact?
How would my loved one be made to feel useful in this community?

Does the well-being of residents seem to be a priority?

Observe the relationship between front line staff and memory care residents very closely. The quality of life of your loved one will be dependent on the quality of the relationships s/he has with the staff who interact with them the most.
Ask how consistent the staffing patterns are. Will your loved one have the same person helping them for a certain number of days in a row? Consistent staffing patterns are a very good sign, as are caregivers who have worked at the site or in memory care for many years.

What support is available here for family members?

Is there a Care Partner Support Group that meets onsite or nearby?
How often are educational presentations given about dementia or related issues?
How often will I be invited to attend a care conference concerning my loved one?
Has this site had experience with different types of dementia (such as Lewy Body, Frontotemporal, and Vascular)? Even if your loved one has Alzheimer’s disease, the most common type of dementia, you want to know if the site has experience and training on working with different types of dementia.

This is by no mean a complete list of what you will want to ask, but it’s a start. Two more ideas:

Ask the person who is touring you, “What are you most excited about currently in terms of what is going in in your memory care community?”
Think about your loved one, their personality, their habits, their interests and accomplishments, and ask specific questions to determine how all of that might be catered to at whatever sites you are considering.

Good luck in your search!
-Marysue Moses, Ebenezer Dimensions Coordinator

Spirituality and Aging – Holding on and Letting Go

12/11/2017

Religious and spiritual beliefs and practices are important in the lives of many of us. When we get older, we reflect back on our lives and also look forward to a sense of meaning, purpose and connectedness in aging. Some of that involves deciding what we want to hold on to or let go of.

So many of Ebenezer’s new residents have to engage in the process of holding on and letting go simply by moving into a smaller apartment than the home they had previously lived in.

“What do we do with the desk that won’t fit in? How about the Holiday decorations – maybe our daughter and son-in-law could use them for their house? What will it be like to get to know all of these other people?”

While this process can be quite painful, it also prepares us for a journey of holding on and letting go of other things. Which unresolved conflicts prevent us from feeling at peace? Can we let them go? Can we seek reconciliation?

According to a Gallop poll, the four major spiritual concerns Americans have about aging, death and dying are:

Forgiveness by God or what one holds sacred
Reconciliation of broken relationships
Giving and receiving forgiveness for past offenses
Having a blessing from one’s loved ones.

These important concerns can be engaged through our spiritual or religious practices. Prayer, meditation, pilgrimages, fasting, and reaching out to neighbors can be very significant religious practices at any stage in one’s life. Spiritual practices are equally diverse and may include meditation, yoga, walks in nature, appreciation of art, music, joining with others for a common purpose. In addition, writing a legacy document or videotaping an autobiography can be quite meaningful for those creating it and those with whom it is shared.

The magazine “Real Simple” published an article in 2005 titled “Getting to know you” by Erik Jackson. He starts off by saying:
“Photo albums? Check.
Family Tree? Got it.
A deeper understanding of our relatives and friends?
That starts here.”

He then lists many questions as conversation starters or almost as an interview format that a good friend, spouse, sibling, or other loved one can ask. Some unique questions are: What is the bravest thing you have ever done? Was there one person who had a big impact on your working life, like a mentor? What are the secrets to a good marriage or relationship? What have you always regretted not asking your parents?

This process of making meaning out of one’s life can be a source of hope, strength and peace. It can bring us the depth of love and connection that we may yearn for.
--Rev. Mirjam Berger
Ebenezer Corporate Director of Spiritual Health

Grateful

11/29/2017

I am grateful for all the inspiration I have received over the past year, from persons living with dementia (many of them, I must add, functioning very well. For instance, Paulann Gordon has been living with dementia for the past 5 years. She is now in the middle stages and continues to function well. She has chosen to live her life as an advocate, speaker and author. Paulann has published a booklet sharing her experiences living with dementia. Vascular Dementia – An Inside Perspective, is available on Amazon. Her story provides valuable insight and encouragement for those living with dementia their caregivers.
Whether we work with persons with dementia, or have loved ones with dementia, we must never forget that the wholeness of the person’s spirit is still there, even when it looks like it isn’t. What are the person’s strengths? What makes them smile? What lights them up? What interests and passions can still be reached and celebrated? For me, answering these questions is of primary importance in caring for our fellow human beings who happen to have dementia.

I am thankful that I am surrounded by people who are deeply committed to caring for those living with Alzheimer’s and other dementias. From devoted care partners whose closest loved ones have dementia, to front-line staff at Ebenezer sites whom I have observed slowing down and taking time to connect with residents, and activities staff who exhibit tremendous energy and enthusiasm to make life easier, friendlier, more pleasant and more meaningful for those residents with whom they work, I am grateful. I have been inspired by occupational therapists, dementia trainers, receptionists, chaplains, administrators, nurses, executives, donors and professional artists, all of whom in some way are making a profound difference for persons with dementia.

In my personal circle, I have been inspired by many friends and family members.
It’s reassuring to remember support is available. And there are those who are passionately devoted to caring for those with dementia. If you feel, like I do, that the news of late is oh, a bit challenging to take in, it helps to remember what is going well in our own sphere in order to maintain and cultivate resilience. It’s part of self-care, which is an essential practice for anyone out there caring for a person with dementia.
Happy Thanksgiving to all.
--Marysue Moses, Dimensions Coordinator,
Ebenezer. mmoses1@fairview.org, 11/21/2017

Considering Moving Your Parent To Memory Care? Here Are Some Tips!

9/26/2017

There could come a time when your parent with Alzheimer's disease or another type of dementia will need more care than can be provided at home. During the middle and late stages of dementia, sometimes 24-hour supervision is required to ensure the person’s safety. As dementia progresses further, round-the-clock care requirements become more intensive.

Making the decision to move a parent into a specialized memory care environment may be difficult, as it is tough to suddenly be faced with a decision that makes it feel like YOU are now in a parental role. But it is important to consider whether or not it is possible to continue to provide the level of care needed in the person’s home.
The questions below, from the Alzheimer’s Association website, are ones to consider when determining if a move to residential care is a good option:

Is my mom or dad becoming unsafe in her or his current home? Is s/he getting lost in the neighborhood, or in the home itself? Are you worried about the person wandering at night? Is crossing the street safely an issue?

Is the health of my parent, my own health, or the health of my other parent at risk? This is a major consideration. Caregiver stress can be deadly. There are caregivers who actually die before their loved ones, because they are determined to do it all and once promised the person “they would never have to move to a home”. Please consider that this is a situation neither party was thinking about when that promise was made. You want to be able to be the daughter, or the son, or you want your other parent to be the wife, or the husband to the person with dementia. Being in the caregiver role can easily drain all energy from your rightful role.

Are my parent’s care needs beyond my physical abilities or the abilities of my other parent? A doctor’s opinion might come in handy here, so that you, the son or daughter, have some professional backup for your own assessment of the situation.

Am I or is my other parent becoming a stressed, irritable and impatient caregiver? Staff members who work with persons with dementia are trained to not take things personally, to answer repeated questions patiently, and to empathize even in the midst of challenging situation. It is typically very difficult, especially at first, for family members to adjust to the changes in their loved one.

Am I neglecting work or family responsibilities in the process of caring for my mom or dad? If you are not sure who you can talk to about any of the issues listed here, this, do not hesitate to call the Alzheimer’s Association’s 24-hour help line as you wrestle with this or any dementia-related issue: 1-800-272-3900.

Would the structure and social interaction at a care facility benefit my parent? Sometimes the person will flourish in an environment where there is more structure and interaction with others. A lack of structure and routine is wearing and stressful for the person with dementia. Sometimes people adjust surprisingly quickly to a new environment, because they have less time on their own in which to become confused about what should happen next. Others take longer to get used to a new routine. Most people seem to settle in within 3-4 weeks.

Even if you plan ahead for a move, making this transition can be incredibly stressful. You may have an abundance of conflicting emotions. You may feel relieved and guilty at the same time. These feelings are common. Regardless of where you choose to have the person cared for, it’s good to keep your focus on making sure your parent’s needs are well met.

Please see http://www.alz.org/care/alzheimers-dementia-residential-facilities.asp for additional information.

--Marysue Moses, Ebenezer Dimensions Program Coordinator

Ten Things I Learned at the Dementia Action Alliance Conference

7/24/2017

At the end of June, I had the opportunity to experience the first ever North American Dementia Action Alliance Conference in Atlanta. This was an amazing event, the best and most moving dementia conference I have ever been to, and it scrambled my brain in the very best way.

The conference organizers included persons with early-stage dementia in their planning. There were many speakers at the conference who also had dementia, who spoke movingly and clearly about horrendous experiences with diagnosis (example: essentially being told by the doctor to “get your affairs in order”, and just prepare to curl up and die) the stigma that accompanies the diagnosis, the despair the ensues, and the long climb back into hope, purpose and connection which now fills their lives.

There were 30 persons who attended the conference who are currently living well with dementia, and doing amazing things. Yes, they run on adrenaline in conference situations and there is another side to their lives that conference goers like me can only imagine, i.e. the utter exhaustion at the end of the day, the confusion that comes and goes, the losing one’s way in a large hotel, the forgetting a portion of what happened this morning.
Here are 10 things I learned:
1. While I am the Dimensions Coordinator for
Ebenezer, a large and reputable organization
which cares for older people, many of them with
   dementia, I am NOT a dementia expert. People
    who have dementia are the real dementia
   experts, and we all, including me, need to listen
   to them more.

2. People with dementia are very smart,
   especially about dementia. Having dementia is
    not to be confused with mental retardation. (I
assumed that I understood that already, but it
was only after hearing this panel of people who
happened to have dementia and who were all
brilliant, articulate and expressive did I really get
it.) People with dementia use their
   intelligence to compensate, to reach out to
   others, and to express their truth.

3. People with dementia do not appreciate the
   automatic assumption that they are
  “suffering” with dementia. Yes, they may be
    struggling to stay connected to who they were,
   but they are not steeped in misery 24/7. As one
   person very succinctly put it, “I have Alzheimer’s,
    but it doesn’t have me.”

4. We must change the lens with which we view
   dementia. Persons with dementia would prefer
    to be seen as “living with a chronic disability”
   rather than “dying from a fatal disease”. We
   encourage people to give up when we frame it
    in the latter way. People often have MANY years
    left once given a diagnosis. A pronouncement
    of their “timeline” may not serve them well. No
   one has a crystal ball.

5. People with dementia are creative and
   flexible. Many have found ways to compensate
    for changes in their cognition; they use tools,
    routines, technology and strategies to support
   themselves.

6. People with dementia are keenly aware of our
   response to them; they’re sensitive to the mood
    on our faces and the look in our eyes. If we are
    kind and open, and willing to meet the person
    where they are at, that means the world to
    them. If we only pity them, or turn away
   because we don’t know how to respond, that
hurts.

7. People with dementia have passion: passion
   to make a difference in the lives of others with
   dementia, passion to rise above the fog that
     sets in, passion to choose to LIVE, passion to
     mentor others with dementia (see
     Dementiamentors.org for more information).
  Their passion fuels them to live their purpose.
They may find that purpose in creating art. One
   participant at the conference spoke of losing
     her ability to speak early on in her dementia
   process. For a time, she was suffering
     intensely. She felt devastated, and without
   hope. A smart friend got her into a clay
     workshop and she started making pots. Now,
   her sense of purpose is fueled by making
   astoundingly elegant, museum-quality pots.
     And by the way, she has completely regained
   her ability to speak.

8. People with dementia are fierce advocates.
    They are resilient. They do get tired of course,
   partially because they spend a lot of energy
making sure other people are comfortable with their illness. People with dementia are ordinary people. They do not want to disappear. They try to forget about dementia so that it doesn’t define them. People with dementia want to live a life with a sense of normalcy, and to live fully, for as long as possible. This includes the right to make mistakes once in a while. Do people without dementia have the right to make some mistakes? So, there’s a lot of food for thought here for those of us who care for people with dementia at any stage. I have to wonder…What if every resident with dementia at Ebenezer had had the advantage, at the start of his/her diagnosis, of experiencing the abundance of support, encouragement, mentoring and community that now exists for persons living with an early stage-diagnosis. Might they be doing a whole lot better now? I think they might. But it is never too late to support people in finding a sense of purpose and meaning, and never too late to treat them with the compassion and respect they deserve. It is with a renewed and profound sense of purpose that I will continue to learn about dementia from the real experts, and to advocate for them, all along the way.

-Marysue Moses, Ebenezer Dimensions Coordinator, mmoses1@fairview.org

Dramatically Different Memory Care

5/3/2017

Our Memory Care program at Ebenezer now has a name –Dimensions.
Dimensions has five building blocks:

Wellness through person-centered, relationship –based care,
Innovative training
Engagement
Supportive environments
Family education and support

We have gathered best practices in each of these realms and are giving our sites the tools they need to implement them effectively and consistently.

I chose the name Dimensions not just because it sounds like the word dementia, but because of all the things the word demands that we think about, such as . . .

The person with dementia has many different dimensions
We can’t assume that what we see or hear or assume about a person is all of what is there. We must be curious, patient and respectful as we work to discover the length, breadth and depth of each person’s history, personality, preferences, sense of purpose, habits, idiosyncrasies, hot buttons, skills (yes, these people still have skills) and strengths. Their long-term interests and passions need to be encouraged. These people still have a sense of humor and a need to laugh, even if that doesn’t seem obvious.

The spiritual dimension
Did you know that some Native American cultures believe that persons with dementia are doing important spiritual work—communicating with spirits at a level the rest of us cannot understand. I love the inspiration this idea provides. It spurs me to work hard to create more and more calm in our Ebenezer environments.

Imagine how we might honor and reward care partners and caregivers if we all agreed that persons with dementia were indeed doing the most important spiritual work on the planet! Imagine the environments we would build for these folks! Imagine the walking paths, the sense of peace and purpose, the accessibility of nature.

The spiritual dimension is indeed another dimension of the person to consider in order to give them the care they require. What moments in their life do they hold as sacred? When do they feel most at peace, most at one with all things? Where have they found solace during hard times in the past? It is important to ponder these questions, search for clues, and to ask the individual, if they are able and willing to respond to them.

The point I am making is part of the theme I often remind myself and all those whom I train on various dementia care topics: People with dementia are PEOPLE, first and foremost. They have needs (to be filled) and quirks (to be enjoyed) just like the rest of us. There are things that make them laugh (to be discovered and used as often as possible). They have likes and dislikes (to be respected) good days and bad days (to be tolerated) and they have courage and resilience (to be admired and emulated).
A person with dementia NEVER stops being a person.

With thanks to Megan Carnarius, author and nursing home operator, for the insight on Native American beliefs.
~ Marysue Moses
Dimensions Program Coordinator
mmoses1@fairview. org

In This Together!

2/8/2017

If you have ever surfed websites of senior housing options, I bet you have frequently run into the term “person-centered care” which we owe to Dr. Thomas Kitwood, a British physician who focused on the importance of remembering that a person with dementia is first and foremost a PERSON with particular needs, challenges, strengths and preferences.

Cannot expect persons with dementia to think like we do
It is also due to Dr. Kitwood’s brilliant work that nurses are no longer trained to try to orient persons with dementia to reality, e.g., “No, no, Mrs. Jones, it’s 2017 now – actually your mother is dead, and the farm has been sold!” Thank goodness for Tom Kitwood! He helped us understand that we cannot expect persons with dementia to think like we do. As I’ve heard nursing home operator and author Megan Carnarius say, “We need to cross to their side of the street.” People with dementia simply cannot come over to ours. We need to give them responses that make sense with the way in which they understand the world.

Relationship-based care
Dementia expert Elion Caspi encourages us to also think about dementia care as “relationship-based care.” If we do not maintain relationship and genuine connection with persons with dementia, trust wears thin. As a result, it becomes challenging for persons with dementia to accept the care they need.

Lost in the grief
It is completely understandable that care partners are exhausted. They often get caught up in the grief of losing the precise relationship they had with their loved one before dementia was part of the picture. All too often, people become angry and bitter, even to the point of saying things such as “Alzheimer’s is worse than death.” That is a direct quote from the despondent husband of a wonderfully clever woman; let’s call her “Pam,” with whom I worked for some years. What a heartbreaking pronouncement from her husband! At this point, Pam still loved to share opinions and insight, sing Broadway tunes, reminisce, walk, dance, and hold hands.

A person is NOT their Alzheimer's disease any more than a person who has cancer is their cancer!
Those of us who have had family members with dementia or other progressive diseases do understand from whence that sentiment arises. However, it is ultimately not a helpful one. Nor is it accurate. It implies that we might as well give up on a person who is still very much alive. This could not be further from the truth. A person is NOT their Alzheimer’s disease any more than a person who has cancer IS their cancer. The person, an intact spiritual being, is still there, though many of their needs have changed dramatically. We do our loved ones a disservice if we refuse to rise to the occasion of their increased needs.

Maintain connections along the way
There are many gifts to be gained by accepting where the person is at, through each and every phase of their dementia experience. There is connection to maintain all along the way. How we connect will vary with different types and different phases of dementia, but in general, smiling, eye contact, gentle touch and approach, curiosity, acceptance of where the person is, conversation about things that are meaningful to the person, sharing laughter, singing, enjoying simple pleasures, giving compliments, promoting calm, validating the person’s feelings, doing things just the way the person likes, making things easier for them, reminiscing, having fun together, sparking creativity, enjoying humor….well, the list of what can be done to maintain a healthy, nurturing relationship goes on and on.

Responding to the world from an earlier developmental time
In short, we can treat the person like a PERSON, and remember that even though this person is losing skills, even though this person may enjoy and indeed benefit from things that children like, this person is still an adult who is simply responding to the world from an earlier developmental time. This person still has strengths and skills we must actively encourage and appreciate in order for them to have a meaningful life.

Language is powerful
Did you notice that I’ve been using the term “care partner” rather than “caregiver?” Language is powerful. When the relationship between a person with dementia and someone caring for them is viewed more as a partnership, what’s implied is that both persons have something to give. Think about it…What might persons with dementia still have to offer us, their care partners?

Some bonds remain unbreakable
They can give valuable input as to what they like and what they don’t like. They can lend us wisdom from past experience; they can share memories of olden days, with humor and perspective. They can inspire us with their courage and resilience. They can give us love. In this process, we may be surprised at how flexible our own capacity to love may become. Even in the late stage of their dementia, our loved one may remind us how some bonds remain unbreakable. Caring for persons with dementia may give us more patience and more appreciation for wordless communication and for life than we’ve ever known.

We are in this together
Thinking about our relationship as a partnership will help make us more open to a person’s participation and input. We just might respect, value and love this person all the more. We are not the same as this person, and we have each been impacted by dementia and changed forever in vastly different ways, but surely we are in this together.

--Marysue Moses, Ebenezer Dementia Care Program Coordinator

Gifts

12/21/2016

As the holiday season is firmly upon us, I find I am thinking a great deal about my mom, Margaret Coleman Moses, who lived with dementia for over a decade. I woke up yesterday morning, in fact, with an image in my head of a steaming cup of tea in one of my mom’s china teacups. It was lovely, like she was greeting me first thing in the morning with a cup of tea in hand (which was not her habit, but she well knew I was fond of that British custom!)

I like to remember one of the last times I saw Mom, out in Denver. This was several months prior to that morning when she slipped away from this life, after having a warm bath and being tucked back into bed by her caregiver at the nursing home. When I saw her that time, Mom no longer spoke very much, and I don’t think she knew my name at that point…but I remember well how she cocked her head and looked at me so intently and how her eyes just completely filled with love. It was overpowering. It still takes my breath away each time I go into that memory.

She knew I was someone close to her, for sure. And she gave me a great gift in that moment. That love clearly did not depend on words exchanged or on her knowing my name or on me saying the right thing. It was just there. I have often heard it said that persons with dementia never lose the ability to give or receive love – proof of that fact was handed to me in that moment. There is still a person in there with whom we can connect!
I would not be in the role I have now at Ebenezer if it weren’t for my mom. I would not have the passion I have for the topic of dementia care, or the inside knowledge of how dementia challenges a family as well as the person who is at the center of it. I would not have the same drive to ensure that the activities we do with our residents at Ebenezer are just that, done WITH them, not AT them, or FOR them, and to ensure that the care we provide is truly caring, empathetic and validating.

Here’s another thing about my mom, which I did not learn until the day she died. I had been involved in the theater for many years – I was in many plays in high school, majored in drama in college, worked for a theater company for over 15 years, and helped found a theatre-based training company, before Mom started showing signs of dementia. In the early afternoon on the morning she died, there I was, on the plane to Denver to join my sister and brother. Slouched in my seat and deep within my raw grief, I opened a newspaper that had arrived in the mail that morning, sent to me by a cousin, from my mom’s home town. I wasn’t sure why my cousin sent this issue, and after scanning the first page, I nearly put the paper away. Instead, I turned the page to find a big picture of my mom as a high school student, along with a young man. It was from a high school production of a play! That young man grew up to be a beloved doctor in town, who had recently passed away -- hence the article. So there she was, my mom, in a play! You see, I NEVER knew she was in a play! This was an astounding fact for me to learn! I felt so ashamed that I had NEVER asked her if she had been in one, and that I had assumed she was too shy to do something like that.

Another gift from Mom! Never assume you know what people have done or not done! I have used this story when I am training about activities and the importance of asking questions about residents and using their life story to create meaningful and purposeful activities.

These gifts are ones I will still remember long after the wrapping paper has been thrown away this year! Thanks, Mom! I couldn’t do this without you!

--Marysue Moses, Ebenezer Dementia Care Program Coordinator

Ebenezer is Minnesota’s largest senior living operator with 100 years of experience serving older adults. As part of Fairview Health Services, Ebenezer is dedicated to healing, discovering and educating for longer, healthier and meaningful lives.

Discrimination is Against the Law. We comply with applicable Federal civil rights laws. We do not discriminate against, exclude or treat people differently because of race, color, national origin, age, disability, sex or sexual orientation..

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