What does this mean? How does this affect us a community and society? Unless families have the means to take care of all their needs, more and more of a need to support families and family caregivers.
Birth Older – does the oldest have more authority? Is the youngest viewed as the default caregiver? Gender Roles – often any daughters are automatically the caregivers, but this doesn’t mean they have the most authority in decision-making Role in the family – both now and in the past. Who is the “responsible on?” Who was viewed as the most nurturing or the one who should make the decisions? Individual Responsibilities – do you have your own family? Who works full-time? Often the family member not working is seen as the default caregiver Distance – Who lives close by and who is further away? Independence – Not wanting to be a burden on family or system; wanting to be in control of own needs. Don’t want to acknowledge the need for help or that they have any health issues
Re-emergence of sibling rivalry – childhood roles and dynamics; Who’s the favorite? Old resentments and patterns of behavior. Not helpful in planning elder care. Unequal Division of Tasks – goes back to previous slide about who is the default caregiver. Division of task doesn’t mean division of power. Finances vs Time – Might be a good solution, but might increase resentment from siblings who are doing the work towards those financially helping Whose Time matters more? – Default caregiver might be the person siblings perceive as having the least demanding job, or the one who doesn’t have children Inheritance – How money should be spent, particularly true in paying a family member to provide care or in paying for help so primary caregiver gets a break Perceptions of Need – Does everyone have the same understanding of parent’s diagnosis? Questions about safety at home and what setting is best for individual to be in
Be Respectful – ok to have different opinions but need to be able to discuss them calmly with respect Focus on present – don’t bring up past conflicts – focus on what’s going on now and how to handle it Speak only for yourself – don’t assume you know what your other family members are thinking or feeling. Clarify or repeat back what they say to make sure you all have a common understand Be aware of non-verbal – how you say something is often more important than what you say. Pay attention to tone of voice and facial expressions Negotiate – may not always be able to come to a consensus, but can you focus on the common good
Assertive vs Aggressive – Taking responsibility for own thoughts and feelings, but still being respectful of the other person and willing to listen and negotiate. Finding ways to be direct and clear about our needs, without putting the other person on the spot or making them feel guilty. Respecting their needs as well as our own. Many times we expect others to understand what our needs are or how we’re doing. Usually doesn’t work.
Doesn’t blame the other person or judge them. I don’t feel able to move mom in with me because of my work schedule. I feel stressed going back and forth everyday to visit with her. I worry about her living alone and falling.
Describe – Express – Specify – Consequences Mom has had several falls at home and can’t manage the household chores anymore. I feel worried about her safety at home and stressed by trying to get there everyday to help with meals and make sure she’s ok. I’d like us to sit down and talk about what options are available to keep her safe without me having to go back and forth so much. If this happens, I know I’ll feel better about her health and safety and I won’t be so overwhelmed. Isn’t directive…doesn’t order anyone around. Opens the door to possible solutions like other family members helping out, hiring help, using a day program.
Aikido – way of the harmonious spirit; about finding common ground. Moving with the other person rather than fighting them. Helps us work towards a resolution. It seems like you really want to be independent and not have to use any outside help. I would probably feel most comfortable with my family helping out too. I’d like us to sit down with the whole family to talk about how things are going and figure out how much help each person in the family can provide, and where we may need to look into outside providers. No guarantee of a solution….but opens the door to problem-solving and good communication. Helps maintain your relationships with your family.
If people ‘Is there anything I can do?’ you want to have some ideas ready. Give them options of what they can do and give them time to think about what’s realistic for them. If they can pick something they like, they’re more likely to volunteer again. Difference between being direct and putting pressure or guilt on someone. Use I statements: “It’d be really nice if you helped out with getting mom to the doctors.” “It’s been so stressful taking time off work to take mom to the doctors. It must be nice for you not to have so much to do.” Instead say: “I’ve been feeling stressed with mom’s doctor appointments and my own work. I need more help with this. Can we talk about any ideas for getting more help with mom’s appointments.” Let go of the belief that you “shouldn’t have to ask.” You may need to bring in the doctor, social worker, or other professional to start the conversation…helps keep everyone on the same page about what is needed. Be realistic about their abilities as well as your own. Consider everyone’s skills and abilities. Your aunt may love cooking and be willing to help with meals; maybe your sister is good with money and can help with the finances and your brother can make calls to programs about eligibility. If your loved one is assuming that you’ll be able to do everything, you need to be clear about how realistic that is for you. Coordination – helps long-distance caregivers stay involved, participate, and keep up to date with what’s happening
I should: No one will do as good a job as I do Fear something will happen if you are away They’re my family Guilt: we did something wrong Regret: feeling sad or disappointed about a situation; this is a hard and difficult situation and we’re doing the best we can Perfection: Being “Perfect” is a set up for failure Taking care of my own needs is selfish: ok to set limits and look out for own health and well-being. Allows you to continue being a caregiver and helps with patience! Both of you benefit when you set limits that allow you to take care of your own needs. Hard to set limits in the face of familial expectations, but protects your own health and finances (employment) which help keep you independent in the future. Ambivalence: I want to care for my family and yet I don’t want to be doing this. Accept full range of your emotions as ok. When the frustration or resentment outweighs the desire, it may be a sign of burnout or that you need more help!
No one answer! Varies for each family depending on the health condition, family abilities, finances, resources available. Range of emotions as a caregiver and everyone in the family is going to experience them differently. Even if you come from the same family, grew up together in the same place, we may still be very different people. Everyone processes their understanding of diseases and changing health issues at their own pace. Grief and loss: denial, anger, bargaining, depression, acceptance Those that don’t see loved one as often won’t have the same understanding of the condition as someone who lives close by or with them. Why good communication is so important!
Get a professional assessment of your loved one’s condition by a doctor, physical therapist, care manager; share doctor reports; share information you’ve learned from conferences like this or online information. Even if you all know the diagnosis, you may have a different understanding of that diagnosis. Consider going to a class/conference together. Has your family member completed a trust, will, Durable Power of Attorney for Finances, Advance Health Care Directive? If yes, does everyone in the family know that it’s been done, who has been named as the responsible party, and what it includes. Encourage your parents to have this conversation with the family if they’re still able to. If not, talk about it before a crisis happens. Don’t wait until mom is the emergency room to find out that you’ve been named their medical decision maker and your siblings aren’t happy about it. Talk early and often. If your loved one doesn’t want to have these conversations, try in multiple ways or ask a doctor/medical staff person to assist. Focus on quality of life rather than end of life. “If something were to happen to you, and you couldn’t make decisions re finances or health care, even for a short time, who would you want to make them for you? I want to make sure that any decisions we make are in line with what you would want and respect your wishes.” If your parent has capacity, then they can still making decision, even decisions that you feel are wrong. Be realistic
Everyone involved in decision needs to know this info Doctors may be hesitant to get specific because it varies from person to person….get as much info as you can about how a disease/health condition progresses but understand their may be variations. How much help with they need showering, dressing, eating, cooking, cleaning, taking medication Do they have dementia or some type of cognitive impairment that will prevent them from making financial decision, remembering to take medication or turn off the stove, knowing how to call 911 in an emergency Will they be able to get up the stairs in your home if they move in with you?
Who should attend: may want to include extended family members or close friends who are involved in the care; if care recipient has advanced dementia or has significant impairment in judgment, you may not want them to be there. Agenda: What do you want to accomplish? Helps you stay on track and avoid old arguments. Should include an update on the CR’s current health (maybe more info from the doctor). Be clear about own limits and boundaries: don’t assume family understands what’s going Guidelines: respectful communication; don’t interrupt; ok to disagree Facilitator: neutral person who can help the conversation stay on track. Social workers, case managers, therapists, pastors/clergy Next steps: have clear follow up items and know who is responsible for doing them. Send it out in writing; Set a timeline for completion
Sometimes you can do everything right, and your family may still not agree. Find ways to cope, ways to nurture yourself and protect your own energy and your own spirit. We can’t solve all the issues of caregiving….we’d need cures for diseases to do that. But we can increase our own resilience and our ability to cope with the challenges that face us.
Family Dynamics in Caregiving
Family Dynamics in Caregiving
Christina Irving, LCSW
Family Caregiver Alliance