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
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
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:
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
If you or your spouse is a veteran and needing extra assistance, you may be eligible for a benefit called "Aid and Attendance." Provided below is information from the U.S. Department of Veterans Affairs on eligibility for Aid and Attendance.
Aid & Attendance and Housebound
Veterans and survivors who are eligible for a VA pension and require the aid and attendance of another person, or are housebound, may be eligible for additional monetary payment. These benefits are paid in addition to monthly pension, and they are not paid without eligibility to Pension.
Since Aid and Attendance and Housebound allowances increase the pension amount, people who are not eligible for a basic pension due to excessive income may be eligible for pension at these increased rates. A Veteran or surviving spouse may not receive Aid and Attendance benefits and Housebound benefits at the same time.
Aid & Attendance (A&A)
The Aid & Attendance (A&A) increased monthly pension amount may be added to your monthly pension amount if you meet one of the following conditions:
This increased monthly pension amount may be added to your monthly pension amount when you are substantially confined to your immediate premises because of permanent disability.
How to Apply
You may apply for Aid and Attendance or Housebound benefits by writing to the Pension Management Center (PMC) that serves your state. You may also visit your local regional benefit office to file your request. You can locate your local regional benefit office using the VA Facility Locator.
You should include copies of any evidence, preferably a report from an attending physician validating the need for Aid and Attendance or Housebound type care.
-Information provided by The U.S. Department of Veterans Affairs
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
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:
-Marysue Moses, Ebenezer Dimensions Coordinator, firstname.lastname@example.org
How’s the food?
I take each question I am asked very seriously, and this one is at the top of the list. Meeting the most basic needs of those who depend on Coventry for consistent and professional care, is our top priority; and ensuring that the meals we provide are nutritious, seasonally-appropriate, and most of all appetizing, must be a priority as well. I am proud to say that Coventry, and our management partner, Ebenezer, succeed at this most crucial goal every day.
Ebenezer’s stated values are Dignity, Integrity, Service, Compassion, and Innovation. These values are reflected in the effort that our culinary professionals put into menu planning. As you can see from the menu in the slideshow, there is something for every resident, every day. In addition to the technically balanced and nutritionally appropriate choices each day, there is a lot of variety. People living in our community can choose from a selection of light salads and soups, to a wide array of regional and ethnic favorites. We honor the dignity of those who depend on us by exceeding their expectations daily with delicious offerings from our dedicated staff.
Integrity and Compassion
One way I know that our meals are something our clients look forward to, rather than merely technically adequate, is the quiet calm that descends over our community when people are sitting down to their breakfasts, lunches, and dinners. Our chef and her staff painstakingly execute the planned menus with such attention to quality that our residents consider every one of their meals home-cooked. The culinary staff lives our company values daily serving our clients with integrity and compassion.
Ability to Choose
I was inspired to write this post today from an unusual source. I was in our dining room and watched a Care Attendant offering the alternative menu to a resident. It occurred to me that having alternatives is just one of the ways we honor our clients’ ability to choose. It would seem that chicken fajitas (with delicious onions, peppers, and Mexican rice) were slightly more adventurous than he was feeling today. Without blinking, the Care Attendant offered a cup of tomato soup, retrieved an alternative menu, and pointed out that there were options available including hamburgers, sandwiches, and salads.
As the Outreach & Sales Director, it is my number one priority to inform the public what makes Coventry the best choice for Senior living in Mahtomedi. I can state confidently that our culinary services are something that we do well with consistency and respect.
“How’s the food?”
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.
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
If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to. Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning. This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose.
I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage. I might mix up medications, so please keep an eye on that. I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal. Multitasking is way too overwhelming for me. My speech may become vague as I struggle to remember the details of whatever you are asking me about.
It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have. There are many! In this early phase, I still have a sense of humor. Please help me find opportunities to laugh. Ask me questions you know I can still answer. (Do not quiz me to remind me of what I am forgetting.)
I still have the capacity for ideas and decisions, so be sure to give me some choices. Relationships are still important to me. Please reassure me that you care. Hold my hand and speak to me with warmth and kindness. I still have interests. Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree. Give me reminder notes if those still work for me.
In this phase, I will most of all need compassion and understanding. I am still a person, a person whose spirit is experiencing considerable anguish at the moment. Please avoid arguing with me, and do whatever you can to make things easier for me. But please try not to scold or embarrass me in the process. If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!”
Please don’t take it personally if I get mad at you or seem to blame you at times. I do this because I am scared. I have a sense that I am losing control. If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you. I so need your love, support and your patience at this time. Thank you for asking me what I need!
--- Marysue Moses, Ebenezer Dementia Care Program Coordinator
This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.
The commercials, the decorations and the sales are all starting -- the Holidays are right around the corner! For many caregivers, this can be a challenging time.
The holidays can stir up mixed emotions for those who have a loved one with dementia. It’s easy for families to feel stress at this time of year, mixed in with grief about the way things used to be. People try really hard to make things work well for their loved one, and the effort can be exhausting. What can families of persons with dementia do to decrease this stress?
Adjust your expectations. You can still find joy and meaning during the holiday season, but things probably need to be scaled down, to benefit your loved one as well as yourself! Give yourself permission, for example, to tone down the decorations. Use less! Blinking lights and large displays can cause disorientation for the person with dementia, so it’s better to keep it simple. Involve your loved one in preparations, but let them participate as they are able. Maybe just stirring the batter, or rolling the dough for a bit, will be enough. Maybe you can open holiday cards together, and take turns reading them aloud, at a nice relaxed pace.
Consider the individual when you choose where your celebration will occur. Some people might do fine with a family gathering in someone’s home, if it’s not too overwhelming. But if a person has become used to their new routine in an assisted living or MC community, being taken out of that environment could prove disruptive and upsetting. Bringing the person back to their new home at the end of the festivities might also be very disconcerting for everyone. At a certain point, people with dementia will do better if the holidays come to them. A small family celebration could be held at the assisted living or care center, maybe in a private dining room, early in the day, when people with dementia have more energy.
Whether you choose to celebrate at home or at your loved one’s place, it’s important to keep the environment calm. Consider that a combination of loud conversation, music, active children, pets and Christmas decorations might cause a person with dementia considerable anxiety. If you do bring your loved one to your home, make sure there is a quiet room they can rest in, if a break is needed.
Remember to trust yourself. You know your loved one. If you have any inkling that your holiday plans might be “too much” for the person, scale back. Pick and choose the events you will involve them in. You may need to set firm boundaries with other family members, but it will be worth it. You don’t have to “do it all” to enjoy the warmth of the holidays.
Many of these tips and more can be found at www.alz.org.
This article was first written by Marysue Moses, Ebenezer Dementia Care Program Coordinator and was first posted on EbenzerMemoryCare.org/blog. You can visit this website for more resources on caring for someone with dementia.