This month, I am sharing my blogspace with David Cobb, BCC, Director of Spiritual Health at Martin Luther Campus in Bloomington. Thank you, David for sharing your insights about caring with us here! Yes indeed, we are in this together. --Marysue Moses, Dimensions Program Coordinator
The day I walked in to the Martin Luther Care Center with a big purple cast on my arm, one of our residents (I’ll call her Peg) asked me what happened. “Ruptured biceps tendon,” I explained.
Peg winced for a moment, then grinned mischievously. “Now you know what it’s like for us!” she said. Well, maybe a little.
Things I can’t do easily right now: button my shirt, tie my shoes, slice a watermelon, type. Things I can’t do at all: ride my bike, mow the lawn, carry a grocery basket; tie a tie, wear long sleeved shirts, serve communion.
There’s plenty I can still do, of course. And there’s little doubt I’ll be able to use my arm again. But it’s not hard to imagine how hard it is for our residents to adjust to each “new normal.” Especially when the challenges are more permanent and mind, body, and spirit don’t heal like they used to.
Any unexpected shift in autonomy, sense of identity, connection to others, or meaning/life balance indicates a potential source of spiritual distress. As a chaplain, I have the privilege of helping residents and their families identify their distress and develop ways to cope with the challenges they face. Some have given up a home and its accompanying sense of place, a job and their role in providing for their family, responsibility for a pet, control of the kitchen, or the camaraderie of poker night with the boys. Such losses can trigger anger, shame, despair, anxiety, loneliness, or fear.
I’m not happy about my injury. It’s going to take a long time to heal. But it’s making me more aware of the spiritual distress our residents feel when moving onto campus, and as their physical conditions and relationships change over time.
Peg asks about my arm each time she sees me now. I try not to over-share. But it reminds me that some of our residents have a spiritual need to care for others, just like we care for them. We’re in this healing and wholeness business together.
Hmm, maybe that’s why we’re starting to speak about being not just care-givers but care partners. I wonder how you become a partner in care?
--David E. Cobb, BCC, Director of Spiritual Health, Martin Luther Campus
Apathy. It’s one of the approximately 500 symptoms you might well find under theumbrella term of dementia. According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness. For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought. Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.
Initiating activity involves planning, organization and motivation. Planning can be complicated, involving lots of steps. For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming.” When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.
To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time. We have to remember that the changes of dementia are disease-related, and brain-based. It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us. The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have. We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.
Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy. These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:
--Marysue Moses, Ebenezer Dimensions Program Coordinator
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:
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
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?
-Marysue Moses, Ebenezer Dimensions Coordinator
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:
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
Choosing a senior living community can feel like a daunting task. To help narrow down your options, ask these questions first:
What type of senior housing do I need?
Not all senior housing is the same. There are many options to consider depending on the level of care you need:
Ebenezer offers a wide variety of senior living options in Minnesota – including memory care, independent and assisted living communities and nursing homes. Each is designed to help you live more independent, meaningful and secure lives. For additional help in determining which Ebenezer community is right for you, read “Choosing Your New Home.”
What happens if I need advanced care?
If your care changes, make sure your senior living community is equipped to handle your shifting needs. Can you easily move from an assisted living to a nursing home? Is a hospital nearby if you need it? Can you keep your existing physician? Will your medical records easily be transferred?
Not only does Ebenezer offer all types of senior living communities, but we are also affiliated with Fairview Health Services. This means you have a wealth of resources at your disposal, from top-notch physicians to the latest in Alzheimer’s research. Each day we are working to improve the quality and safety of patient care, which is how Ebenezer and Fairview became pioneers in the secure transmission of electronic health records between nursing homes and hospitals.
Where do I want to live?
Moving into senior housing brings exciting changes, like choosing the exact area you want to live. Do you prefer the familiarity of your current location and want to find senior housing in your own community? Or, do you look forward to moving closer to loved ones who may live in a different area? Perhaps you are interested in experiencing a new neighborhood altogether?
There are more than 85 Ebenezer independent living, assisted living, memory care and nursing homes in both urban and rural settings throughout Minnesota. Since 1917, we’ve been Minnesota’s leader in senior housing, memory care and assisted living. For close to 100 years, our compassionate caregivers have been members of your community. Now, we invite you to be a part of ours.
Schedule a tour today to learn more about the vibrant senior living options at Arbor Glen!