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Between a Rock and a Hard Place: Navigating the Challenges of Family Caregiving.

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Presentation on theme: "Between a Rock and a Hard Place: Navigating the Challenges of Family Caregiving."— Presentation transcript:

1 Between a Rock and a Hard Place: Navigating the Challenges of Family Caregiving

2 Exercise Take a piece of paper Divide it into 3 equal columns First column: Write in the words, Paid Caregiver Second column: Write in the words, Me Third column: Write in the name of your loved one receiving care

3 Exercise, continued Under the first column, write in some of the challenges you have with the paid caregivers. These challenges can include having a stranger in your home; not knowing how to handle problems such as chronic lateness; or issues about the caregivers relationship with your family member

4 Exercise, continued Under the third column, write in some of the challenges you have with your family member. These may include disruptive behavior; physical strain of care; or issues with medication

5 Exercise, continued Under the second column, write in some of the challenges that you face caring for yourself. These may include not having enough time; feeling pulled in too many directions; or guilt about taking a vacation

6 What we hope to achieve: After attending this session, we want you to be able to: –Negotiate boundaries with paid caregivers –Communicate effectively with paid caregivers –Increase repertoire of caregiving skills specific to family members with cognitive impairments –Increase repertoire of skills to care for yourself and prevent burnout

7 Some Challenges Associated with Paid Caregiver Stranger(s) in my home Persons of different socioeconomic or ethnic strata –Can lead to different interpretations of on time, of care, of involved, of place in the family Hierarchy of the home care agency

8 Boundary Issues Is the PCA a friend or employee? –How do I discuss problem behaviors without jeopardizing relationships? Vulnerability of elder –Elder gets involved with personal issues of PCA My own feelings –Jealousy, inadequacy; is the PCA closer to my family member than I am?

9 Care Needs Is the care recipient really getting what he or she needs? Is the quality of care and the commitment by the PCA satisfactory? –If these needs are not being met, how do you communicate them to the PCA? How do you communicate your concerns to the agency?

10 The Triad: You, the PCA, and Your Family Member You may sometimes feel like the middle of a seesaw as you balance the needs of your family member on the one side and the responsibility of working with a paid caregiver and the agency on the other Good communication skills can help you address problems and issues without inadvertently creating more

11 Why are we talking about communication? Challenge to communicate with loved ones who have dementia or are ill Challenge to have strangers come into your home and care for your loved ones Differences between you and the PCAs can cause communication difficulties –Different ethnicities, socioeconomic strata

12 Communication We think we are communicating, but are we? –We may be sending unintended messages, either nonverbally or extraverbally Opposite-speak Sarcasm –Sometimes, we are sending intended messages, but cloaked in pointed humor (this way, we can deny it if the interaction becomes uncomfortable We think we heard the message, but did we interpret it correctly?

13 Giving respect - names are important Call people what they want to be called: If her name is Mary Jones, do you call her Mary, Ms. Mary, Miss Mary, Mrs. Mary, Ms. Jones, Miss Jones, Mrs. Jones? Be clear about how YOU want to be addressed and how you want your family member to be addressed

14 Communicating with Clarity and Respect Avoid opposite speak. Opposite speak is when one uses sarcasm by saying the opposite of ones true feelings in an attempt to express ones true feelings. (e.g., I really enjoy being spat on by people, it just makes my day!) If what you really mean is that you dont like being spat on then just say, I dont like to be spat on.

15 Communicating with Clarity and Respect Communication is a two way event Listening is an active event Listening actively is one way to demonstrate respect.

16 Communicating with Clarity and Respect Listening actively requires letting the speaker know that s/he was heard and understood. Listening actively requires direct eye contact, sometimes standing or sitting still, verbal and non verbal gestures, sometimes writing a note about what is being said, taking turns, not interrupting.

17 Respect is listening Listen actively Look, stop, wait - let them finish Dont interrupt Turn off radio, TV - completely off Let them know you heard and understood Paraphrase

18 Communicating with Clarity and Respect Listening actively lets the speaker know s/he is worth listening to. When speaking to older individuals assess the level at which you must project, dont assume everyone has hearing loss and therefore presume to shout at them.

19 Communicating with Clarity and Respect When speaking to older people be certain that side noises (e.g., TV, radio, traffic noise, other people speaking at the same time) do not interfere with the persons hearing. Sometimes with older people their ears will hear background noise just as loudly as they hear the person sitting right in front of them.

20 Communicating with Clarity and Respect Address older individuals with respect in tone and language. Use language of their day, not the most hip new slang. Assertive language is plain and clear – and respectful of feelings

21 Communicating with Clarity and Respect Assertive language does not suggest or imply – it is direct but is respectful of feelings. Assertive - say what is on your mind, but keep in mind the feelings of others. Aggressive - say what is on your mind, but dont care about the feelings of others or deliberate try to hurt or offend them

22 Communicating with Clarity and Respect Respectful tones and words are as important during conflict as during harmony. Use gestures if necessary to aid in communication.

23 Addressing Unsatisfactory Performance First, make sure to review the contract between you and the agency If your family member is not receiving the care he or she is supposed to be receiving, address it in an assertive manner Keep voice neutral, try to keep emotion out of the interaction

24 The Other Part of the Triangle: the Care Recipient We talked about ways to communicate respectfully to the PCAs and agency employees as you negotiate and advocate for your family member These same principles help when faced with the difficult task of caring for a loved one who may not always be cooperative

25 Cognitive Impairment Diminished brain power as a result of temporary or permanent physical changes in the brain or body Can be from dementia (Alzheimers AIDS) Can be a result of severe mental illnesses, such as schizophrenia

26 Common Behaviors in Persons with Cognitive Impairment

27 Non-aggressive Moaning, repetitious words or sentences Wandering, rocking

28 Aggressive Yelling, cursing, screaming Hitting, spitting, biting Paranoia is not uncommon, especially when the person with CI is trying to make sense out of the environment or situation.

29 Sexual Behavior Sexual behavior, such as masturbating in public is also not uncommon. Sexuality is present in aging and disabled persons, and the confused person is often seeking sexual solace.

30 Sexual Behavior Persons with CI may confuse another person for a spouse or may forget they were ever married. Inhibitions are removed, which explains why sexually inappropriate behavior may occur in public.

31 Disruptive Behavior as a method of communication All behaviors, no matter how distasteful, are the result of your family members response to some emotion or fear.

32 Disruptive Behavior as a method of communication Your family members with CI have difficulty interpreting stimuli and may react with violence if they believe that they are being harmed. It is important to realize that the person with CI does not exhibit disruptive behavior because they choose to, but the behavior is the result of the dementiacommunication patterns are altered by the disease causing the dementia

33 Disruptive Behavior as a method of communication Disruptive behaviors can be the result of your family members inability to tolerate noises, activities, or changes in the environment. They have a reduced ability to filter out unimportant stimuli, so they are bombarded with everything equally.

34 Assessing reasons for disruptive behavior Misinterpretation of surroundings –Persons with CI have limited capacity for learning new information. –Even though they are told several times, this is the bathroom, they may still misinterpret the surroundings and may react with fear –Vision and hearing impairment may further create problems with correct interpretation

35 Assessing reasons for disruptive behavior Pain and painful procedures May be aggravated by your family members who are resistant to taking medication and may not receive their pain or psychiatric medications

36 Assessing reasons for disruptive behavior Stress Sensory overload Meaningless noise

37 Assessing reasons for disruptive behavior Desire for immediate attention Loss of control/autonomy Fatigue Desire for sexual intimacy Change in routine Psychiatric co-morbidities

38 Strategies for coping with disruptive behavior Determine antecedents to the disruptive behavior

39 Strategies for coping with disruptive behavior Bathing is a usual antecedent. If water is near the face or head of a confused person, he or she may react in an aggressive manner –May need to avoid tub baths, use baby wipes or warm damp washcloths for different body parts

40 Strategies for coping with disruptive behavior Have your family member control the flow of water (e.g., using a hand-held shower head to direct the flow of water) Let your family member get into the tub slowly Approach your family member in a relaxed manner

41 Strategies for coping with disruptive behavior Less likely to provoke agitation. If one approaches a confused person in an authoritarian or bossy manner, your family member may react in an unfavorable way. Avoid being focused solely on the task Sometimes, your family member does not understand what is expected of him or her with a specific task, and may become frustrated and act out.

42 Strategies for coping with disruptive behavior It is a good idea to talk to your family member about personal things of interest to him or her during tasks (e.g., grandchildren, previous occupation, favorite activities) Be flexible in approach with your family member The use of gestures and pantomime to show your family member what you want him or her is helpful

43 Strategies for coping with disruptive behavior Do not limit your conversation to your family member because of the confusion. Chatting away with your family member has been shown to improve agitated behavior. Your family member may respond to the verbal stimulation.

44 Strategies for coping with disruptive behavior However, when asking your family member to do something, use short, one- step REQUESTS, not commands. Do not keep repeating the same request, otherwise your family member may become agitated Show interest in your family member, both verbally and nonverbally

45 Avoid interruptions Studies have shown that interruptions resulted in increased agitation and tension on the part of your family member and decreased flexibility and personal contact on the part of the nursing assistant. Stay off of the telephone while doing care

46 More Strategies Remember not to take aggression personally, unless you have deliberately done something to provoke your family member, it is not your fault! Praise your family member in an adult-like manner. Have manipulatives in the environment

47 More Strategies In the home environment, have items available that are associated with activities that your family member previously enjoyed. One family kept jumbo blunt knitting needles and bits of yarn in a basket for their grandmother, who was an avid knitter prior to the dementia. She derived comfort from sitting and holding the items in her lap.

48 Use touch judiciously Some your family members respond well to touch; others may react negatively. Find what works with your family members. More Strategies

49 If your family member is already agitated, touching in a forceful manner may escalate the agitation Remove your family member from the area, if possible If your family member is engaging in sexually inappropriate behavior (e.g., masturbating in public), will need redirection. More Strategies

50 Distraction Humor or playful responses may divert your family members attention from the discomforting situation and may stop the aggressive behavior More Strategies

51 Promote decision making Give your family member as much REALISTIC choices as possible, within their abilities Helps your family members retain personal power and dignity

52 Promote decision making Shows that you care Have your family member do as much care as possible Explain to your family members that doing as much for themselves keeps their bodies working properly (e.g., finger strength, hand coordination)

53 Promote decision making Encourage your family member to use adaptors Sometimes it is faster and easier to do it yourself, but you are not helping your family member in the long run Make sure the environment is best suited for the needs of your family member

54 Promote decision making Does your family member like all of the stuffed animals on his or her bed, or did someone else place them there because he/she likes them? Does your family member really need the 12 crocheted afghans on her lap or on his bed?

55 Questions or Comments?

56 Group Work Think about a difficult situation involving the care of your loved one When you communicated your concerns, was the situation resolved in a positive way? –What worked? What didnt work? –Based on what you have learned so far, what could you have done differently?

57 Its Like Losing a Piece of My Heart: Dealing with Loss, Death, & Mourning

58 Loss Part of life Can be sudden (death of a young person) or expected (death of a terminally ill person)

59 Loss Can be bittersweet –Transition of a child from infant, to toddler, to preschool, to school age –Loss of a child leaving home, but going to college and growing up

60 Loss Some losses seem bad initially, but then turn out to be a blessing (a man is laid off from one job, only to find a better one)

61 Loss When losses are bunched together, as in older years, multiple effects can be devastating –Examples of losses in older years Death of spouse, family, friends Loss of home Loss of employment Loss of activities Loss of roles (caretaker, leader) Loss of own abilities –Memory –Functioning –Independence

62 Reactions to Loss Because losses are personal, reactions to loss are individualized –What may be a small loss to me may be a larger loss to someone else –The process of grieving is called bereavement

63 Reactions to Loss Although the process is individualized, there are some general components –Sadness The person is unhappy with the loss. He or she expresses sadness, cries –Denial This isnt happening. If I ignore it, I wont have to deal with it

64 Reactions to Loss Anger –Can be at self or others –May belittle others, may become a difficult or demanding family member –Sometimes, one family member is a target because he or she is safe; Mom may be angry at her out-of- state son but vents her anger on her nearby daughter because Mom is afraid her son will never visit again. –May express anger by trying to exert control over those items that the person still has control over

65 Reactions to Loss –Blaming May seek to make someone else the culprit for the loss. This is an attempt to make meaning out of a loss May blame self or others: if only I had taken my medicine, I wouldnt have had this stroke, or If only I had a better doctor, I wouldnt have needed that amputation.

66 Reactions to Loss –Bargaining If I can learn to walk with this walker, you will let me go back to my apartment, right Can be with family, health care providers, even God

67 Reactions to Loss –Depression The person may lose interest in food, enjoyable activities May sleep all of the time or most of the day May cry easily and all of the time

68 Reactions to Loss –Acceptance Reconciles the loss with overall picture of self Adjusts self-concept to fill up hole left by loss

69 Reactions to Loss This process may take days to years, depending on the extent and importance of the loss –Some people move out of one stage, only to return to it later –Some stay stuck in stages

70 Caregiving Strategies Avoid even more losses –Give your family member as much independence as possible –Give family members choices regarding meal ideas, daily activities – make choice options realistic –Listen to family members ideas about the care

71 Caregiving Strategies –Do not take things personally This is also extremely difficult No one likes to be the scapegoat, but realize that your family member is not striking out at you, the person Tell your family member, gently but firmly, I dont like it when you (fill in blank). I understand that you are upset and hurting, and I would like to help you

72 Death and Dying You will be working through your own emotions as your loved one goes through the dying process –Can be prolonged or sudden, no way to predict The PCA will most likely be working through his or her own emotions, too What level of intimacy are you going to allow? What level of intimacy would you find reasonable or acceptable?

73 Avoiding Burnout:Caring for Others by Caring for Ourselves

74 Basic Needs Food and drink Sleep Leisure Activities Activity I dont have time

75 Nutrition Carbohydrates Proteins Fats

76 Food Pyramid High carbohydrate, low fat Works for some people High jumps in insulin, followed by blood sugar drops In many people, causes carbohydrate cravings Become hungry a few hours after the meal, want more

77 Other Options High protein, low carbohydrates (e.g. Atkins) May be problematic Works by putting body in a state known as ketoacidosis People lose weight, but raise triglyceride levels and are more prone to heart disease, high blood pressure

78 Healthier Options Zone Diet or South Beach Diet Eat protein at every meal –Low fat sources: tuna, chicken, cottage cheese, egg whites Balance with healthy carbohydrates: fruit, vegetables

79 Healthier Options Avoid white bread, white pasta (refined foods); Eat whole grain breads The trick is that the food digests slowly, so that insulin levels remain constant Eat small amounts of fat with meals

80 Healthier Options Read the labels Lowfat and nonfat may have even more calories than the actual real foods More sugars added to replace the fat; May do more harm than good

81 Exercise 2 types –Aerobic Walking, running, swimming, bicycling Cardiovascular benefits

82 Anaerobic Lifting weights Weight lifting builds muscle so that you can burn more calories while resting You cannot turn fat into muscle!

83 Anaerobic Muscle does not weigh more than fat, but it is denser!! Think of exercise as recess or playtime Helpful to involve friends, children Helpful to combine both

84 Sleep Necessity, not a luxury 8 hours/24 hours Sleep hygiene –Go to bed at the same time each night, even on nights off (if possible) –Avoid using the bed and bedroom for other activities (eating, paying bills, studying) –Need for the mind to associate bed and bedroom with sleep

85 If unable to fall asleep.. Avoid caffeine 8-12 hours before bedtime Avoid heavy meals immediately before sleep Avoid alcohol Try relaxing activities such as warm baths, calm music

86 Caring for the Psychological Self Exploring the body-mind connection –Good physical care equals a healthy mind Need down time for thinking and reflection Make a definite transition between your different areas of life, for example, work life and your home life (transition rituals can be helpfultaking off shoes, changing clothes, enjoying the commute)

87 Caring for the Psychological Self Hobbies are a necessity Important to change gears before they become stripped and worthless

88 Caring for the Social Self Everyone needs friends and fun Do not wait for a 1 week or 2-week vacation Plan mini vacations Everyone should have at least 1 fun day per week Important to have respite caregivers, either paid or unpaid –Church volunteers, neighbors, family, friends –Do not be afraid to ask!!

89 Stress Management Stress: strain or pressure –Sources: job (problems with supervisors, co- workers, clients), family, societal demands –Feelings: of pressure, anxiety, out of control –Cannot remove stress Can adjust reaction to stress

90 Stress Management Incorporates all of the above, plus strategies for relaxing –Guided imagery –Prayer –Breathing exercises

91 Time Management Strategies Understand what demands are causing the conflict Strive to achieve a balance between competing demands –Knowing your limits can help you to better use your strengths –Lower standards…a little bit of dust is OK

92 Unhealthy Ways to Deal with Stress Eating as stress management –When stressed, it is not unusual for people to crave comfort foodse.G. Mashed potatoes, dessert items, chocolate –Its not what you are eating, its what is eating you –People do feel better (temporarily) after consuming certain foods, such as chocolatecertain brain chemicals are affected –In the long run, more problems, more stressvicious cycle

93 Unhealthy Ways to Deal with Stress Drinking as stress management –Binge vs. Constant drinking –Need for a drink to unwind –As need grows, potential for dependency –CAGE questionsdo you have a problem? Cut down; Annoyed; Guilt; Eye-opener

94 Unhealthy Ways to Deal with Stress Other unhealthy ways people manage stress –Shopping binges –Temporary euphoria, followed by increased bills (and increased stress) –Smoking –Legal and illegal drugs

95 GUILT??? Many people feel guilty or selfish if they put their needs ahead of others Remember the advice from flight attendants: PUT YOUR OXYGEN MASK ON FIRST BEFORE ASSISTING OTHERS WITH THEIRS!! Taking time out to care for yourself is not a luxury but a necessity

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