Giving Care Is Challenging - But What About Receiving Care?
Generally, the conversation about needing long term care to get through the day revolves around cost, availability, insurance and demands on care givers and family. Outside of professional caregiver forums, it’s rare to find a discussion of the emotional and physical distress of the person who receives care.
We sympathize with people who set aside their own lives and needs to give care. Entire forums and websites have been built to better serve caregivers. Without a doubt, it’s a difficult and demanding task which can result in serious mental and physical problems. Caregivers deserve support.
What about those they care for?
We usually assume that if someone is getting help with the tasks of daily living that they can no longer do alone then everything is okay. After all, who doesn’t like some pampering when they feel achy and weak from illness? When your spouse brings you hot soup to calm your queasy tummy, isn’t it natural to feel safe, loved, cared for? Perhaps that’s part of why we don’t discuss the discomfort of being “cared for” – generally, we expect to feel good about the efforts of those caring for us.
The reality is quite different for many people who need care. Patience is shorter when pain grabs ahold of us – it’s easier to snap that the soup is too salty instead of thanking the cook. Even being asked how you’re doing can be aggravating - just how often can you respond politely when you’re feeling miserable? Frustration takes a front row seat when you can’t even button your shirt because of arthritis. Let’s face it, when illness or injury constantly interfere with what you want to do it’s easy to get angry. Being out of control is hard. Depending on others can be even harder.
Here are some of the difficulties expressed by loved ones who are receiving care:
- Being treated like a child – baby-talk, bossy behavior, I-know-best attitude.
- High pitched, quick speech patterns making it hard to understand what’s being said.
- Unfamiliar routines, surroundings and food.
- A feeling of constant invasion of personal space. Or, for some, not enough personal interaction.
- Coping with so many different personalities day after day.
- Complex and hard-to-understand forms.
- Lack of coordination between health care providers.
- Care managers not updating instructions from doctors, therapists and specialists in a way that care givers are alerted to changes.
- Dealing with the many governmental services and private businesses involved in providing and paying for care.
Getting care can be exhausting, lonely, painful, confusing, frustrating and depressing. And that can be hard to admit.
What Can You Do?
So how can we make things better for our loved ones? Honestly, some things we can’t do much about. But if we start by listening with care, paying attention to details, and asking a few questions perhaps we’ll discover how to ease some of the trials our loved ones experience.
Dr. Gwyn Cattell, psychiatrist, shared the following tips based on her years of experience with patients dealing with the life transition from independence to needing care. In her experience, grief is an often the overlooked source of the emotional challenges during the transition. She recommends care givers and loved ones consider taking these simple steps to help seniors cope with loss of independence and abilities.
- Learn to recognize the stages of grief and methods to ease the toll. Remember that the stages of grief are not necessarily experienced in order - your loved one may experience many 'stages' in a single day, jump back and forth between stages, or linger on one stage for a while. It can be a different experience for everyone.
- Comfort and support the loved one through reminiscing about treasured past experiences. Focus on what your loved one most enjoyed about the experience.
- Get to the heart of what your loved one’s challenges are with Reflective Listening.
- Use positive redirection to guide thoughts away from distressing emotions and move toward meaningful activities.
- Help your loved one build new routines that accommodate the changes to their abilities and the care givers entering their lives.
Dealing With Grief
According to the Cleveland Clinic, regardless of whether a loss is a spouse or a job, people experiencing loss tend to experience grief in stages. “Grief is a natural response to any kind of loss,” says clinical psychologist Regina Josell, PsyD. “People experience it in different ways, but typically, it includes a variety of intense emotions, like sadness, anger, irritability and guilt.” Keep in mind that these stages are meant to be descriptive and don’t necessarily apply to everyone or happen in the order presented. The five stages of grief can be summarized as:- Denial - “Denial refers to the difficulty comprehending the reality of a loss,” Dr. Josell explains. “It can take a while to wrap your head around the fact that you’ve experienced a significant loss — that things are different, and they’re not going back to the way they were.”
- Anger - “Anger is a perfectly natural response, and in the case of loss, it can be directed at a variety of sources,” Dr. Josell says. It can also manifest as blame — the feeling that someone else is at fault for your loss.”
- Bargaining - The bargaining process sometimes happens before your loss has fully occurred, like when you think, “If I recover from cancer, I promise I’ll start going to go to church every week,” or “If my husband pulls through after his heart attack, I’ll never argue with him again.”
- Depression - It’s natural to be sad when someone you love dies or when you’ve experienced another major loss. Symptoms of the depression stage of grief can include:
- Loss of hope about the future.
- Feeling directionless, lost or confused about your life.
- Difficulty concentrating.
- Difficulty making decisions.
- Acceptance - “Acceptance is a sense of understanding that there is a finality to what has happened,” Dr. Josell says. “You can hold onto your sadness while still experiencing good memories of the past and maintaining hope for the future.”
The bottom line, Dr. Josell says, is simple: “If you feel you’re suffering, go talk to somebody.”
How Reminiscence Therapy Can Help Seniors Cope
Barbara Field, writing for verywellmind.com, describes what Reminiscence therapy is, techniques used, and how it works. Here are some ways to encourage your loved ones to revisit their past using sensory memories. Note how powerful it is to reminisce using music from your loved one’s adolescence and youth.- Visual: Go to the attic and take out old photo albums and keepsakes. Watch old movies of the family. Often, these visual reminders will cheer them up. Talk with your relative about their photographs, magazine clippings, letters, and diaries. Be sure to ask open-ended questions to stimulate your relative’s memories.
- Aural: Play songs they grew up listening to or from their favorite bands using YouTube on your phone. Music therapy has a host of positive health effects including lowering blood pressure, boosting immunity, and staving off depression. (Lee KS, Jeong HC, Yim JE, Jeon MY. Effects of music therapy on the cardiovascular and autonomic nervous system in stress-induced university students: a randomized controlled trial. J Altern Complement Med. 2016;22(1):59-65. doi:10.1089/acm.2015.0079)
- Taste: Cook or bake your senior relative’s favorite foods. Eat slowly and talk with them about what they remember about eating these foods as a child. For example, a single bite of panettone, a sweet bread that is enjoyed in Italy for Christmas, may prompt a flood of memories for your grandfather from Milan.
- Tactile: Ask them to hold a high school sports trophy or feel the raised textures on a painting. Give your relative one of their old sweaters to touch. Or ask them to hold close to their heart a soft teddy bear they played with in childhood. You might ask your relative to try on a favorite ring or piece of jewelry.
- Olfactory: Scents vividly conjure up memories for us. It’s remarkable how fast that happens. Use aromatic scents, perfumes, and scented candles to trigger memories. We associate memories so strongly with specific smells because the olfactory system is located in the same part of our brain that affects emotions and memory.
Using Reflective Listening to Get to the Heart of Difficult Issues
In their article on Reflective Listening, Neil Katz and Kevin McNulty tell us that “Reflective listening is a special type of listening that involves paying respectful attention to the content and feeling expressed in another persons’ communication. Reflective listening is hearing and understanding, and then letting the other know that he or she is being heard and understood.” The reflective listening process offers a number of benefits:- It lets the speaker know that she or he has been heard, understood, card for, and supported.
- It gives the other feedback on what he or she said and how it came across.
- It allows you to check your own accuracy in hearing what the other has said.
- It avoids the illusion of understanding.
- It helps prevent the “mental vacation” in which you are inattentive during the conversation.
- It helps the other focus on self, vent, sort out issues, express feeling, and deal more effectively with emotions.
- It allows the other to move to deeper levels of expression at his or her own pace.
- It helps the other to think and articulate more clearly.
- It helps the other arrive at a solution to his or her own problem.
- It helps you clarify what you are expected to do.
- It helps you deal effectively with the issue, problem and/or needs the other raised.
Positive Redirection Helps Shift from Being Upset to Finding Calm
Although redirection techniques tend to be described for children or dementia patients, they actually can be helpful in a variety of upsetting situations. One of the more versatile tips lists for seniors is offered by the Learning Center at TheKey.com.
Here are ten well-tested tips for calming agitation in a loved one living with dementia.
- Stay Calm - Agitation and aggression are contagious. . . . When you stop and take a deep breath to calm yourself, you are demonstrating calmness. This helps to make your loved one feel safe and reassured. Take a step back and see if you can identify a cause for the agitation, for example, a tense mood in the room. Remember that your loved one is not trying to give you a hard time—he or she is struggling as much as you are.
- Slow Down - Stop whatever you are doing and slow down. Listen to what your loved one is saying, even if it doesn’t make sense. Don’t correct, as that just adds conflict. Take a deep breath and remember a good memory you share with your loved one. Allow that warmth to enter your eyes and look directly at him or her. Smile gently and try to ask for permission for what you need to do or offer help. For example: “May I help you wash the dishes?” You can then make a positive request like: “Will you walk with me to the store?”
- Focus on Feelings, Not Facts - Trying to reason and argue with a person with dementia will only frustrate both of you! Listen to the expression of frustration even if the actual words don’t make sense. Your loved one might be saying, “I need the car to drive to the ball!” You could respond by saying, “you really are wanting the car today?” Then try to provide clear reassurance. For example, “I will take you out in the car today and we can get what you need.”
- Offer Respect and Validation - Always treat your loved one with respect. . . . Although you may see behaviors that remind you of a child, your loved one is not a child. Guarding his or her dignity will prevent hurt feelings that lead to agitation. The reality of your loved one with dementia may not agree with the reality that you see. . . . You can agree with your loved one’s perception of reality without lying. The easiest way to do this is to ask gentle questions about what they are telling you.
- When your loved one tells you that there is a “strange man” in her kitchen, you can validate the feeling behind it and ask questions—even if that strange man is actually her husband.
- Try saying, “That must be frightening! Would you like me to go check why he is there?”
- Other bridging phrases are:
- What is that like?
- Tell me more about….
- It would be so lovely to do that….
- Limit Distractions - Develop an environment of calm in your loved one’s home. Choose smaller gatherings over crowds as much as possible. One or two visitors will be easier to handle than a room full of talking guests. Turn off the TV when talking to your loved one—its noise can be difficult for your loved one to block out. Limiting distractions for yourself will also help you as a caregiver. . . . Try leaving your phone in another room during care activities—see if your undivided attention helps calm your loved one.
- Declutter - Always aim to simplify your surroundings when you notice signs of agitation. Move into a quieter space. A calm environment will often calm your loved one. Reducing the amount of non-essential items is a great way to increase feelings of calm in a home.
- Check for Discomfort - Your loved one may have trouble telling you that they are uncomfortable. Fidgeting, restlessness, having trouble sitting in one place, or just being irritable can all be signs of physical discomfort. Making sure that your loved one is physically comfortable will drastically reduce aggression and agitation.
- Refocus - Pay attention to the immediate situation or activity. Notice if the activity seems to be triggering your loved one. If so, make a change, redirecting to more peaceful and relaxing activity. If a conversation is upsetting either of you, change the direction. Acknowledge what your loved one said and then move to a different topic.
- Say Yes - Aim to say yes as much as possible. If your loved one mentions that she saw someone who passed away years ago agree with how lovely it would be to talk to them again. You can even build on that and ask what they talked about. This gives you both a sense of connection and comfort with each other.
- Connect - Being on the receiving end of a sudden outburst of anger from a loved one is heartbreaking and scary. . . . You can listen to music together, go for a walk, play an instrument, offer a massage, or brush your loved one’s hair.
Build New Routines That Accommodate Changing Abilities
Beverlysdaughter.com confirms that “over a quarter of adults over the age of 65 experience symptoms of anxiety that significantly impact their day-to-day life. The toll aging takes on one’s mind and body can cause significant psychological stress as they lose their sense of independence and cannot live as they once did”.While it may sound simple, studies have shown that routines can significantly improve the lives of our loved ones by reducing levels of anxiety/depression, improving sleep, and even increasing their safety. There’s also a science to setting up an active routine. With a bit of planning you can introduce a productive and fun routine that helps your parent worry less and enjoy life more.”
Building a routine that includes both chores and fun:
- To empower your loved one, talk with them about what they enjoy doing.
- Schedule chores as part of the regular routine but at times when they can get help if needed.
- Add regular exercises 3-4 times a week to “improve their physical and emotional health.”
- Based on whether they are introverts or extroverts, build in some time with people they enjoy.
- Make sure the plan is flexible – routine without being rigid.
- Plan ahead for meals, grocery shopping and any assistance they’ll need to accomplish these tasks.
- Match the routine as much as possible to their past habits (early or late riser, afternoon walks, etc)
- Make sure to plan for breaks and naps. For most seniors, activities take longer to complete so plan for extra time.
- “Keep the daily schedule as consistent as possible. The same sequence of events each day helps seniors with memory issues get into a groove.”
- And make sure to post the schedule in obvious locations. Use a favorite calendar or a whiteboard and colorful pens. Depending on your loved one’s memory, posting the specific activities for each room. For example, post the morning and evening hygiene routine in the bathroom to remind a loved one to brush their teeth or shower.”
Strategy At A Glance
Let’s face it, being the one who needs care can be exhausting, lonely, painful, confusing, frustrating and depressing. As a concerned friend or family member, there are many ways you can help relieve the impact.Dr. Gwyn Cattell, psychiatrist, shared the following tips for loved ones dealing with the stressful and sometimes traumatic transition from living independently to needing care.
- Learn to recognize the stages of grief and methods to ease the toll.
- Comfort and support the loved one through reminiscing about treasured past experiences. Focus on what your loved one most enjoyed about the experience.
- Get to the heart of what your loved one’s challenges are with Reflective Listening.
- Using positive redirection to guide thoughts away from distressing emotions and move toward meaningful activities.
- Help your loved one build new routines that accommodate the changes to their abilities and the care givers entering their lives.