Spiritual Caregiving and Dementia

by Amy Phariss

ONC: Colette, you wrote a book about spiritual caregiving for those living with Alzheimer’s and dementia. What motivated you to write about this topic?

Colette Bachand: I focused on spiritual care for two reasons. The first is that providing spiritual care is very effective, meaning it makes such a difference to the person with dementia by providing a sense of calm and connection. In the moments you might pray or sing with somebody, they are such moments of a reconnection. Dementia is such a lonely disease. People are so withdrawn and feel alone. When you hold a hand or say a prayer, the comfort from that connection has been shown to lower blood pressure, create better behaviors, calm people. Even just a brief moment….spiritual care really makes a difference.

The other reason, for those of us in clergy roles, no one has ever talked about it. In seminary or pastoral care training, we talk about cancer or mental health issues or a couple with marital issues. You get all this training around these other issues, but nobody talks about how to help people and families with loved ones with dementia. So, I wanted to address a gap in training for spiritual providers.

Picture somebody in a nursing home who has dementia. They sit in their chair all day. The only touch is to change clothing or to be fed. Every touch they’re receiving is goal-oriented to get a task done. But when someone comes in and touches a hand or a shoulder or sings a song….how different does that touch feel?

I also wanted to just share some stories of things I’d done, things I did in the moment that I tried and they worked.

PEOPLE WHO HADN’T SPOKEN IN A LONG TIME WERE SUDDENLY SAYING THE LORD’S PRAYER.

I thought: this person is still in here. This person is still responding. This person is responding to what their sense of God is. I believe that people with dementia can understand more than we think they do, but they can’t reprocess it to feed it back to you. They’re understanding much more than their ability to respond allows. The nonverbal cues tell me that, the foot tapping to “Amazing Grace,” for example.

ONC: What is the biggest struggle you’ve seen for those who are caregivers for loved ones with these illnesses?

CB: The challenges are major isolation for the caregiver because, especially with this disease, people don’t want to see it. So, Mr. and Mrs. Smith are best friends with Mr. and Mrs. Jones for 40 years. They did everything together. Now Mr. Smith has dementia and is progressing. The Jones’ don’t want to see it. That could be me; that could be us. Mrs. Smith is devastated. She is a little embarrassed and doesn’t want her husband to be embarrassed. So they’re staying home more. They’re not going out. They’re not inviting friends over anymore.

PEOPLE SEND TUNA CASSEROLES IF A LOVED ONE DIES OF CANCER. IT’S DIFFERENT WITH DEMENTIA. IT JUST IS. PEOPLE ARE AFRAID OF IT.

The other big challenge is that when you’re caring for someone with dementia, every day is different and unpredictable. What worked yesterday may not work today.

The other huge issue, and maybe it’s the biggest, is that when you have a child caring for a parent, for example, the sense of loss for the caregiver….it’s just loss after loss after loss after loss. I’ve lost my mom. She’s still here, but this isn’t her anymore. Who she is now isn’t who she used to be. It’s utterly painful for family members and caregivers. It’s devastating.

It’s heartbreaking for families. I’ve had family members who say they can’t come visit anymore. They can’t do it.

ONC: Do you see a difference between caregivers who struggle with this and those who are able to cope better?

CB: I had a family, the wife had Alzheimer’s. She’d been married 60+ years. Her husband was part of the care team. One day I asked how he was doing and how he was able to cope seeing her and taking care of her, he said, “You know, I fell in love with her once, and now I’ve just fallen in love with a different version of her.”

It’s partly being able to accept one’s own limitations and being able to accept it for what it is rather than trying to fight it all along. Some caregivers try to make it better for the person as opposed to joining their world.

It helps to join the person where they are. Don’t expect them to remember their child’s name or who is there in the pictures. It’s the difference between asking the loved one, “Don’t you remember who this is? Tell the nurse about this day in the picture” and saying, “Look at this picture of us on our wedding day. It was such a wonderful day. We listened to Frank Sinatra.”

You can’t ask a person with dementia to remember something any more than you can ask someone who just broke his leg to go run a marathon.

ONC: Your story about the man and his wife reminds me of the part in your book where you write about your relationship with your father, who lived with dementia. You write that with your father’s diagnosis, “We got to spend a lot of time together. I got to know him helping to care for him….” Can you speak about what it is like for family members to develop new relationships with loved ones after a dementia or Alzheimer’s diagnosis?

CB: Life slows down for families living with dementia. In my dad’s last two years, we spent long hours eating a muffin at my kitchen table, sitting in front of the fireplace with the dog, or just going for a drive. It was a very different time in our lives compared to growing up when he might have been dropping me off at dance school or helping put up the Christmas tree, or even holding my daughter when she was his first grandchild. Life is busy, but then dementia slows things down. You begin to appreciate little things. In his dementia years, he liked to hold hands. Sometimes that is enough. Once we went through some of his very old files, things he had saved like newspaper clippings and letters. He didn’t say much and got tired easily, but it opened up a world of his I hadn’t known

I WAS STILL HIS DAUGHTER, AND HE WAS STILL MY DAD. HE WAS DIFFERENT, SURE, BUT STILL HIM.

ONC: How do you think it’s possible for a person living with dementia to recall the Lord’s Prayer but not be able to remember their address or room number? Can you help that make sense?

CB: In dementia, the left side of the brain is lost first. It goes soonest. The right side, which holds emotions, music, the creative side of life, it isn’t lost first. That’s why someone with dementia can tell you the song they danced to at their wedding in 1952 but can’t tell you what they had for breakfast. So, memories associated with emotions stick around longer, so to speak.

Religion is a connection to something emotional, so they can remember the Lord’s Prayer or sing “Amazing Grace”. They sang it at their mother’s funeral.

ONC: Toward the end of the book, you write about the challenge of making important, often agonizing decisions regarding your dad’s care…and his life. What advice would you offer family members and loved ones about these challenging decisions? How would you offer comfort to those who shoulder the burden of making choices without the full input of the people they love?

CB: Yes, that is true. When my dad died, I was with him and the first thing I said out loud was, “Dad, I hope you’re ok with the choices I made.” It seemed like a strange thing to say but after I thought about it, I think it spoke to the guilt I felt. It’s hard to decide not to offer life continuing measures; it’s hard to make decisions for another person because they can’t; it’s hard to decide someone is done driving or needs to live in a memory care unit. It’s hard to decide we are just going to let nature takes its course. It feels awful. But the truth is, letting nature takes its course is one of the most compassionate decisions we can make for another person, especially when that person is suffering. I would say the most important thing people can do is realize they are only being asked to make the next decisions as best they can; there aren’t black and white solutions, and any decision made with great love, is the best decision.

NATIONAL CAREGIVERS DAY - February 17, 2023

“There are four kinds of people in the world. Those who have been caregivers.

Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”

- Rosalyn Carter

We are grateful for the dedication and care caregivers provide each day.

Being healthy is MORE than what you put on your plate.

When you became a care PARTner, did you receive piles of pamphlets, lectures from friends, or spend time researching how to improve the life of the person for whom you are caring? Did all the new information cause you to feel like someone else’s health depended on you? Perhaps you were given instructions about diet changes, increasing physical activity, or being sure the “receiver” of your care stopped drinking and smoking. Wow, that is a lot of pressure isn’t it? Being a care PARTner is hard. Care PARTners need care too.

People don’t necessarily plan on becoming a care PARTner. It is a role that often happens in an instant when someone you know suffers from a sudden medical diagnosis and requires care. In response, there may be hectic decision making, disorganization, stress, overwhelm, or anxiety about how everyone’s life will change. First and foremost, the attention goes to the “receiver” of care. We ask questions regarding their needs for medication management, transportation, mental health, socialization, sleep, shopping, medical appointments, and more. Wow, that is a lot of pressure isn’t it? Being a care PARTner is hard. Care PARTners need care too.

Let me say that being a care PARTner is also a gift. You have been entrusted with someone else’s wellbeing who is likely very grateful for you. And whether you were forced into the role or chosen to be, it can be gratifying to know you have an impact on someone else. While hearing words of appreciation and affirmation may be fleeting, care PARTners must be assured of their value and worth. But what happens when those feelings are hard to find and a care PARTner becomes frustrated, resentful, withdrawn, or unhealthy?

As an integrative health and wellness coach for care PARTners, I stress that being a care PARTner is only PART of who you are. A care PARTner cannot only GIVE. Care PARTners must RECEIVE. When this balance is off, a care PARTner’s health and wellness can become compromised. When anyone puts their self care aside, they jeopardize their health. And if a care PARTner becomes unwell, they will be less likely to provide optimal care. Too often, care PARTners ignore this shift or rationalize it by prioritizing the “receivers” needs. They may find excuses to neglect PARTs of their own life that they cannot “fit in” or handle while caring for someone else. When this happens and persists, care PARTners may develop stress or care PARTner burnout. Guess what? There are ways to avoid this. Maintaining a care PARTner’s health and wellness is important for themselves and for whom they care.

Health goes beyond the plate.

When people talk about health, the immediate thought is typically about nutrition. While making healthy food choices is important, so too is mental, physical, emotional, and spiritual health. Listed below are less obvious, but just as influential ways to improve YOUR health and wellness.

• REST: Really Enjoy Some Time alone. Whether you are in a deep sleep or simply closing your eyes and keeping your body still allows your nervous system to settle and reset. Do this REST with no one able to disturb you. (I often provide my clients with a doorknob sign!)

• MOVEMENT MATTERS (MM): I don’t suggest that all care PARTners designate an hour a day to train for a race or take a yoga class. I insist that ANY kind of body movement apart from the labor you provide as a care PARTner, happens every day for at least 15 minutes. You can include the receiver in this MM and modify it accordingly. Movement can mean stretching, dancing, boating, biking, or even squatting in place. Okay…..vacuuming can count but wouldn’t a walk outside feel even better?

• CREATE and DISCOVER: We’ve heard of how important it is to keep our brains active and stimulated. No one is too old to learn something new. Being creative can mean reading something you would not normally choose, writing a handwritten letter and sending it in the real mail. - is there a friend or family member you haven’t spoken to in a while? Can you think of a creative way to contact them? Does the thought of taking a… dance or martial arts class tempt you? What about picking up a pen or paints and sketching the first things that come to mind. ART is healing even if you are not an artist. SING out loud.

• CONNECT: Relationships matter. It is important that you connect with people EVERY day who are outside of the space where you care. It is important to impress upon the receiver that you value the relationships you have in your life and cannot ignore them. Being able to CONNECT with other people who are carers in the form of a support group might feel comforting for some. Even when you are out doing errands, smiling at a stranger is a way to connect. Social connections are positive contributors to health.

• LAUGH and LOVE: Make time to surround yourself with something that puts a smile on your face or makes you laugh out loud. A deep belly laugh increases endorphins and stimulates your heart and lungs. Be with people or things you love. This can include all time favorite movies, shows, music, people, looking at old photos, gardening, or ordering from your favorite restaurant.

• SAY “YES”: Remember when we were told to “Just say NO”? Care PARTners need to say “YES” when people offer to share the care, provide some respite, or invite you to join them for an outing. It is likely that as soon as you became a care PARTner, people showed up to help, made a casserole, or offered to pick up something for you. Once you’ve established a routine and shared how “well” you are doing, people might stop asking because they “think” you’ve got it all by yourself. Finding more ways to say “YES” will afford care PARTners the opportunity to outsource, reduce burden, find time for self care, and achieve a healthier balance.

• ENJOY your ENVIRONMENT: This does not have to do with preserving the planet (though recycling is an excellent idea) but rather recognizing that the place you spend most of your time should be pleasing and bring you joy. Are there too many odds and ends filling the walls or shelves around you? Could some new pillows brighten up the room? Do the rooms make you happy or are you bored of seeing the same thing? Small changes in your environment can spark emotions that lift you up.

• ADMIT and ACKNOWLEDGE: Your feelings matter. Your identity matters. When a care PARTner denies or covers up their positive or negative emotions, communication is compromised. Admitting your feelings can be in the form of writing in a journal or sharing them with someone else. When emotions are bottled up, there is potential for them to be transferred and expressed inappropriately. This includes being able to share positive and negative feelings because some care PARTners struggle with both. It might feel awkward or tense to reveal your feelings to the person you are caring for. When a calm moment is established, having a discussion can be extremely freeing and healthy. Mental health professionals are options for people who seek objective support. www.icommunicarenc.com

• FOOD is FUEL: I cannot end my list without mentioning the importance of making wise decisions when it comes to choosing the food you eat. While my coaching programs do not focus on diets, it is essential to find moderation between the foods that you crave, forbid, and need. Food is a way to connect with others, make yourself feel good, and be healthy. It is all about balance.

If you have any questions or interest in learning more do not hesitate to reach out. I’m just a discovery call away….

Instagram @icommunicare for more tips!

Slow Cooker Chicken and Rice

Slow cookers can help take some of the stress out of preparing food at home. Make this easy recipe for a delicious meal that everyone will love! Plus, it’s Gluten Free.

TOTAL TIME: 2 hours 30 minutes

SERVINGS: 6 Servings

Equipment Needed: Slow Cooker

Ingredients

• 4 chicken breasts

• 1 tsp minced garlic

• 1 1/2 tsp onion flakes

• 1 tsp dried oregano

• 1 tsp dried parsley

• 1 tsp salt

Instructions

• 1 tsp black pepper

• 1 1/2 C long grain rice

• 4 1/2 C chicken broth

• 4 C broccoli florets

• 1 1/2 C plain greek yogurt

• 1 1/2 C shredded cheese

1. Add the chicken breasts along with the spices in the slow cooker.

2. Cover with lid and set the slow cooker on high. Cook for 1 hour.

3. Next, add the rice and chicken broth.

4. Set the timer for another 30 minutes (on high) and continue to cook.

5. Remove the chicken and cut it into small cubes, then place it back into the slow cooker.

6. Add the broccoli, yogurt, and 1/2 of the cheese.

7. Mix everything together and cook on high for another 45 minutes.

8. Add the remaining cheese and cook for another 15 minutes. Serve straight from the slow cooker. Enjoy!

ACROSS

1. Bathroom item

6. Down Under

15. High water-proof boot

16. Entwining

17. Arab leader

18. Sugar substitute

19. Ballpoint, e.g.

20. Hard to miss