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

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 caregiver’s 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 one’s true feelings in an attempt to express one’s 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 don’t like being spat on then just say, “I don’t 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 • Don’t interrupt • Turn off radio, TV - completely off • Let them know you heard and understood • Paraphrase

18. Communicating with Clarity and Respect • Listening actively let’s the speaker know s/he is worth listening to. • When speaking to older individuals assess the level at which you must project, don’t 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 person’s 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 don’t 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 (Alzheimer’s 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 dementia—communication 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 member’s 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. More Strategies • Use touch judiciouslySome your family members respond well to touch; others may react negatively. • Find what works with your family members.

49. More Strategies • 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.

50. More Strategies • Distraction • Humor or playful responses may divert your family member’s attention from the discomforting situation and may stop the aggressive behavior