Information and resources that support your role in caring for a loved one.

Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org. Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts

In this entry, we discuss the importance of good communication for caregivers and some strategies to improve communication between caregivers and the loved one they are caring for, as well as other members of the family or friends. Providing insight is Juanita Allen Kingsley, Wilderness EMT, who is the Director of Business Development for Century Health Systems. 

A health educator, she trains more than 2,000 people in the MetroWest region annually through her First Aid, Wilderness First Aid, CPR and AED classes in addition to the variety of health and safety programs she teaches. She holds a Bachelor of Science degree in Business Administration from Boston University and completed EMT training at Northeastern University. She received her Wilderness EMT training certification through Mountain Aid Training International.

For more information, visit www.centuryhealth.org or call 508-651-1786.

Caregiving MetroWest: Why is good communication between the family caregiver and the loved one they’re caring for so important?
Juanita Allen Kingsley: In all relationships, communication is key; between a family caregiver and the loved one, even more so. A mother and daughter may have been close all their lives, but now the relationship has shifted into a new and complex set of expectations and demands. Caregiving can develop as a gradual march with a family member taking on more and more care or it can be a quick sprint – a relationship begun suddenly after an illness or an accident. It’s best to see this relationship as a partnership in which both family member and loved one communicate clearly and openly so that the best care can be given with the least emotional and physical toll on the caregiver.

CGMW: What are some general strategies for caregivers to improve communication with their loved one?
 An effective strategy is to set up regular opportunities to update each other. For instance, every Sunday evening, Mom and her daughter take half an hour to talk through anything that’s come up during the week. Keep notes between “meetings” so you can remember topics you wanted to address. Make sure that you as a caregiver are using words that your loved one can understand. There should be no distractions, such as TV on in the background. It should be done over a cup of tea or coffee, not a cocktail. Hearing aids should be in and batteries fresh. It’s key to remember that this partnership must be treated with the same respect as a marriage or a business partnership.

CGMW: How can a caregiver communicate their own needs to their loved one?
A caregiver should communicate his/her own needs clearly, regularly and without apologies. Doing so regularly will prevent resentment from building up. Have these conversations at a time that you schedule, not when you are exhausted after a long day or upset at how your life has changed. Remember that you cannot do your caregiving work if you don’t take care of yourself. You need not feel guilty about needing respite from the difficult work of caregiving. “Mom, I’m finding that I really miss time with my friends. I’m going to start going to book group on Tuesday evenings and taking Fridays for my own errands.”

CGMW: The person suffering from the chronic disease or condition can be obviously get upset, frustrated and angry about their condition and lash out at the people closest to them, which is usually the primary caregiver. How can the caregiver deal with such outbursts?
 It sounds trite, but please remember “It’s not about you.”

It is important to acknowledge and validate the loved one’s frustration. If you can find a support group for your loved one and he/she is still able to participate in such a forum, it can be helpful. Talking with their primary care provider about a change in medications that could help with anxiety or depression is also recommended.

CGMW: How can caregivers express their own frustrations and emotions in a healthy way?
When caregivers came together in our Caregiver Care programs, we found that being together as a support group was a very helpful way to express frustrations and emotions. One can also find support groups online. It is very important to find a forum through which to express emotions –not doing so can build up resentment and anger. It’s best not to use our spouses or co-workers as the place to express frustration – this is difficult enough! If you notice that you are drinking or eating as a way of coping with your isolation or frustration as a caregiver, please get help.

CGMW: Are there communication strategies for someone caring for a loved one with dementia when their cognitive skills decline and limit the effectiveness of traditional verbal interactions?
 Here is a great list of tips from “Communication Strategies for Dementia” by Jeff Anderson:

Here are 10 tips on how to effectively communicate with someone who has moderate to severe dementia.

1. Recognize what you’re up against. Dementia inevitably gets worse with time. People with dementia will gradually have a more difficult time understanding others, as well as communicating in general.
2. Avoid distractions. Try to find a place and time to talk when there aren’t a lot of distractions present. This allows your loved one to focus all their mental energy on the conversation.
3. Speak clearly and naturally in a warm and calm voice. Refrain from ‘baby talk’ or any other kind of condescension.
4. Refer to people by their names. Avoid pronouns like “he,” “she,” and “they” during conversation. Names are also important when greeting a loved one with dementia. For example: “Hi, Grandma. It’s me, Jeff,” is to be preferred over, “Hi. It’s me.”
5. Talk about one thing at a time. Someone with dementia may not be able to engage in the mental juggling involved in maintaining a conversation with multiple threads.
6. Use nonverbal cues. For example, maintain eye contact and smile. This helps put your loved one at ease and will facilitate understanding. And when dementia is very advanced, nonverbal communication may be the only option available.
7. Listen actively. If you don’t understand something your loved one is telling you, politely let them know.
8. Don’t quibble. Your conversations are not likely to go very far if you try to correct every inaccurate statement your loved one makes. It’s okay to let delusions and misstatements go.
9. Have patience. Give your loved one extra time to process what you say. If you ask a question, give a moment to respond. Don’t let frustration get the better of you.
10. Understand there will be good days and bad days. While the general trend of dementia sufferers is a downward decline, people with dementia will have ups and downs just like anyone else.

CGMW: What strategies or approaches should a caregiver try to better communicate with other family members or others involved with the care of their loved one to get help, reduce the stress and burden and let them know just how much they are doing to care for the person?
 Caregiver.org has a terrific list of strategies to use when communicating with other family members. Among other approaches, they suggest:

1. Ask yourself what you really want from your siblings. Before you can ask for what you want, you need to figure this out, and that’s not always as simple as it seems. First of all, ask yourself whether you really, deep down, want help. Many caregivers say they do but actually discourage help. So think hard. Do you want them to do certain tasks regularly? Do you want them to give you time off once in a while? Or do you feel you have everything under control but you’d like them to contribute money for services or respite?

2. Or – and this is a big one for many caregivers – do you really not want them to do anything but you’d like more emotional support? Many caregivers feel lonely, isolated, and unappreciated. If you’d like your siblings to check in on you more, ask them to call once a week. And tell them it would really help if they would say “thanks” or tell you you’re doing a good job. They are more likely to do this if you don’t criticize them for what they are not doing.

 Ask for help clearly and effectively.
 Asking is the first step. You might ask for help by saying: “Can you stay with Mom every Thursday? I have to get the shopping done for the week and it gives me some time to myself.” Don’t fall into the common trap of thinking, “I shouldn’t have to ask.” Your siblings may assume that you have everything covered so they don’t recognize the added responsibilities and “burden.” They are involved with their own lives and struggles and not so attuned to yours that they can read your mind. Also, if you’re not exactly sure what you want from them, you may be giving them mixed messages.
 Ask for what’s realistic. People get more when they don’t ask for the impossible. So consider the relationship your sibling has with Mom or Dad and ask for what that person can really give. If your sister can’t spend 10 minutes with Mom without screaming at her, don’t ask her to spend time; ask for something that’s easier for her, like doing paperwork or bringing groceries.

3. Watch how you ask for help—and steer clear of the cycle of guilt and anger.

 Avoid making your siblings feel guilty. Yes, really. Guilt makes people uncomfortable and defensive. They might get angry, minimize or criticize what you are doing, or avoid you. That is likely to make you angry, and then you will try harder to make them feel guilty. They will attack back or withdraw even more. And round and round you go.
 Sometimes your siblings will criticize you because they are genuinely concerned about your parents. Try to listen to these concerns without judgment and consider whether it is useful feedback. At the same time, be bold by asking for appreciation for all that you are doing – and remember to say thanks back when someone is helpful.
 Be careful of your tone and language when you request something. It’s not always easy to hear the way we sound to others. You might think you are asking for help in a nice way, but if you’re angry, that’s the tone your siblings will hear. And they’re likely to react in unhelpful ways.

4. Get help from a professional outside the family. Families have long, complicated histories, and during this very emotional passage, it is often hard to communicate with each other without overreacting, misinterpreting, or fighting old battles. Even the healthiest families can sometimes use the help of an objective professional. People like family therapists, social workers, geriatric care managers, physicians, or clergy can help siblings establish what is real about a parent’s health and needs in order to help distribute responsibilities more equitably. In family meetings, they can help you stay focused on the topic at hand and help you avoid bringing up old arguments

CGMW: What should caregivers be aware of that they are communicating beyond their words, such as how their tone of voice or body language can affect the message they are trying to convey even if they don’t intend to do that?
 So much of our communication is non-verbal – it can’t be faked! In his book “Louder Than Words: Non-Verbal Communication,” author Alton Barbour states that only seven percent of communication is based on words. Thirty-eight percent is based on volume, pitch and tone of the voice, and a full 55 percent is based on facial expressions and other non-verbal communication. Making eye contact, sitting eye-to-eye, limiting distracting gestures, a soft touch on the arm, speaking loudly enough to be heard – these are all helpful non-verbal communication tips.

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