Understanding Family Caregiver Rights: The Complexities of Family Caregiving
Explore the intricate world of family caregiving, tackling common challenges like caregiver burden, sibling dynamics, and emotional stress. Learn strategies for effective communication, legal protection, and self-care to navigate caregiving responsibilities
Cindy writes…
I was my mother's full-time caregiver for 3 years. Now my brother says I was a mooch living for free while caring for my mom.
Well here goes….first I’ll start with my mom passed on this past Monday at 6:25pm.
I have been her live-in, full-time caregiver for over three years and it has been joyous at times and hell at times. She had uncontrolled diabetes (type 2), uncontrolled AFIB, uncontrolled hypertension, a brain injury that caused water on the brain that was untreated and Urinary Tract Infection’s.
She took meds for everything, but nothing really helped, she ate sugar, drank coffee, was a hyper nut, and had permanent, progressive brain damage.
On the 23rd of December, she had an event that caused her to be transported to the hospital, be admitted and treatment was started for the AFIB (heartbeat 140 to 190).
Finally, after a week, and after maxing out recommended meds (cardizam at 600 mg a day, metoprolol 400mg) and others her pulse was at 90. The feeling was that part was physiological the other was a bad valve.
She was sent to a rehab. Well, all was going pretty well, until my brother, a lawyer and a real prick, became her new best friend, and the one with the answers to her medical problems. He started working on her by telling her I didn’t know what I was doing (I had medical POA).
Finally, after two weeks, unbeknownst to me, she rescinded my POA and got a new one without having appropriate legal documents in place to ensure her understanding of the implications.
I knew mom was nervous acting, but I didn’t know why. On this past Sunday night, I went to visit her and she was in severe AFIB. I alerted the staff and they decided to transport her to the hospital ASAP.
I wanted her to be monitored and stabilized, my brother had other ideas. He got with this cardiologist and they (the dr) wanted to do a heart nerve ablation.
Mom always said she didn’t want any operations, she was very weak and with all the other stuff, I felt she should not have any procedures. I asked her, “are you sure”, “do you want Mike making these decisions?”
She told me yes. She was not in her right mind, but what could I do? Anyway, I told her, he’s going to kill you.
On the way to the operating room, she coded, they started CPR, she vomited and aspirated her vomit. She died, less than 24 hours from my prediction.
Now, my brother is saying it’s my fault, because the quack doctor is now trying to cover his butt and is now saying mom had a septic infection and this caused this.
I am so lost, tired and sad. I’m the cause of all of my mom’s problems in their eyes. They are now trying to break the terms of the will.
I hired an attorney yesterday. I don’t even know when the funeral is.
What a mess. It will work out and the attorney says it will get straightened out, especially after it sends an invoice to the estate for 24/7 care for 3+ years. Won’t that give them a jolt? They consider me a mooch for living with mom and think they were doing me a favor by allowing me to change my mother’s diapers.
I could go on and on, but for some of you that know about addictions, I will add, my brother is a nasty, functioning alcoholic. My mom knew death was close and he came in promising a miracle if she would just sign the papers.
She wasn’t in her right mind but she signed and killed herself. When I saw her, forgive me, for the squeamish, but she was in the ER and after all their attempts to resuscitate her, she looked like she had been mugged.
She had a DNR. Oh well, she was very sick, but they finished her off.
I keep thinking that I must do something for mom because we had a schedule, I’m trying to adjust to not having to clean her, med her, feed her, console her, find her remote control, plan dr appt, you all know the rest.
Is there anything I could have done to protect myself?
I appreciate any information you can give me.
Cindy
Dear Cindy,
Your experience as a family caregiver echoes the trials and tribulations faced by many in similar situations. The journey of caring for a loved one, especially a parent with complex health issues like dementia or chronic illnesses, is fraught with both emotional and physical stress. Your dedication and the sacrifices you made are commendable and deserve recognition, not criticism.
The Caregiver's Burden
Many caregivers, like yourself, shoulder enormous responsibilities. From medication management to meal preparation, every aspect of the care recipient’s well-being falls under your purview. This often leads to caregiver burnout, a state of physical, emotional, and mental exhaustion. The emotional health of caregivers is frequently compromised, leading to conditions like clinical depression and anxiety. Additionally, caregiver discrimination in the workplace, such as denial of promotions and unequal treatment, further exacerbates the challenges faced by family caregivers.
Warm regards,
Diane Carbo RN
Here’s more information and solutions for other family caregivers to avoid this type of situation in the future
Navigating Family Caregiver Challenges: Dealing with Sibling Dynamics
Most family caregivers feel alone and abandoned by their other family members. This sense of isolation can be exacerbated by family responsibilities discrimination, where caregivers face unfair treatment due to their caregiving duties.
The Lone Caregiver in a Family
In the realm of family caregiving, especially when it involves caring for an aging parent or a family member with Alzheimer's disease or dementia, it's common for one sibling to become the primary caregiver. This role, often assumed due to natural leadership qualities, geographical proximity, or even by default, brings with it a unique set of challenges.
Coping with Caregiver Burden
The primary caregiver often faces a full caregiver burden, managing not only the physical demands of caregiving but also the emotional and mental stress that comes with it. This includes everything from meal preparation to navigating health care options and managing medical appointments, often while balancing their own life and work schedules. Many family caregivers face the common challenges of providing care and feeling judged and dismissed by the other family members. I think that the caregiving journey leaves you feeling isolated. Some feel guilty when they are accused or judged for their efforts. It’s a role that can lead to emotional and physical stress, and even caregiver burnout, as they try to juggle caregiving duties with personal responsibilities. Non caregivers have no idea of the caregiver challenges and burden you deal with on a daily basis.
The non caregivers take advantage of the the family caregiver wearing down their self esteem by causing emotional stress. The uninvolved siblings perceive the family caregiver as weak. I have seen this happen to others time and time again.
Dealing with Resentment and Emotional Stress
It's natural for the primary caregiver to feel resentment, especially when other siblings seem disengaged. Questions like, "Why is all this responsibility mine?" are common. This resentment, though justified, can be detrimental to the caregiver's mental health and can strain family dynamics. It's essential for caregivers to find healthy outlets for these feelings, like support groups or talking to close friends, to avoid letting negative emotions consume them. The caregiving role is challenging. The caregiver burden and stress causes 63% of family caregivers to neglect their own health and well being. They work long hours and neglect their own needs. They suffer sleep deprivation, face financial concerns and neglect their physical health.
Balancing Expectations and Caregiving Responsibilities
One major challenge is managing the expectations and contributions of other family members. While some siblings might excel in logistics and caregiving tasks, others may be better at providing emotional support or managing finances, including having the financial power to handle legal and financial matters. Recognizing these strengths and delegating tasks accordingly can help in distributing the caregiving responsibilities more evenly.
After helping many caregivers over the decades, I encourage family caregivers to create a Care Team Partner Support group. With the growing population, we need to expect others to support the family caregiver. If an uninvolved sibling is not going to provide support or offer you a break from your caregiving duties, they should be expected to provide financial support for respite services.
There are very limited affordable respite care in this country. Family caregivers report suicide ideation, financial strain and long work hours providing care at home. The Care Team Partner concept is to help the care recipient and the family caregiver by providing practical support. The Care Team Partner support group can help the family caregiver overcome their biggest challenges. And every Care Team Partner group should include every family member. If they will not offer physical support, they should be expected to contribute financially.
Caregivers need support and respite care
The Importance of Clear Communication
Good communication is key. Establishing boundaries and clearly communicating the needs and expectations can help in reducing misunderstandings and conflicts. It's important for the primary caregiver to involve other siblings in decision-making processes but also to know when to make executive decisions, especially when they hold legal authority such as power of attorney. That is why I have partnered with an online care management platform. The care recipients, the care team partners and the primary caregiver communicate on this platform. It is a way for the family caregiver to tell the team the needs and even updates on the care recipients ever changing status.
I also encourage every family caregiver to develop a family caregiver contract. This is also known as a personal care contract. This is a working agreement between the care recipients and the family caregivers. I know that most caregivers report they feel guilty and uncomfortable for expecting financial reimbursement for providing care. Many caregivers have come to me later and expressed they regret not implementing this initially.
Many family caregivers leave work and experience terrible financial strain. The uninvolved family members are cruel and uncaring, often not offering anything but criticism. Many, after the death of the care recipient, they are left with some of the biggest challenges of their caregiving journey. They feel betrayed and unappreciated by the family members. Many family caregivers report they are left with no home, no money and severe health issues from the care they provided.
Many do not realize their caregiving duties would leave them with no ability to save for their future.
Financial Strain and Self-Care for Family Caregivers
Financial concerns are another significant aspect of caregiving. Many family caregivers use their own money for care expenses, leading to financial strain. Seeking financial advice and exploring options like respite care services can provide much-needed relief. A local area agency can also offer support and resources, including low-cost legal assistance and community services tailored to caregivers' needs. Additionally, practicing self-care is vital for caregivers to maintain their own health and well-being.
Being the primary caregiver in a family is a demanding role that comes with its unique challenges, especially regarding sibling dynamics. Balancing emotional and physical stress, managing family dynamics, and ensuring self-care are crucial for maintaining the caregiver’s health and well-being. Open communication, proper delegation of tasks, and seeking external support can help in navigating these challenges effectively.
Navigating Healthcare and Financial Responsibilities
As a family caregiver, managing healthcare and financial responsibilities can feel overwhelming. The complexity of medical care, coupled with the financial strain, requires careful planning and informed decision-making. Here are some strategies to help you navigate these challenges effectively.
Legal Protection and Family Caregiver Contracts
It’s crucial for family caregivers to safeguard their own rights. This is where a family caregiver contract comes into play. Such a contract outlines the caregiving responsibilities and financial agreements, providing legal protection through appropriate legal documents against misunderstandings or accusations from other family members. It’s a step that many family caregivers overlook but can prove invaluable, especially in situations where family dynamics are complex or strained.
A family caregiver contract is necessary to set boundaries and expectations
Benefits of a Family Caregiving Contract
A family caregiving contract, also known as a personal care agreement, is a formal arrangement among family members that outlines the duties, responsibilities, and financial aspects of caregiving. This contract, often overlooked, offers numerous benefits for both the caregiver and the family:
Clarification of Roles and Responsibilities
Specific Duties: The contract specifies the caregiving tasks, from daily living assistance to medical appointments, ensuring everyone understands what is expected of the family caregiver.
Prevents Misunderstandings: It minimizes confusion among family members about who does what, reducing potential conflicts and resentments.
Financial Transparency and Compensation
Fair Compensation: It allows for the caregiver to be compensated for their time and effort, acknowledging the work that often goes unpaid in family settings.
Avoids Financial Strife: Clear terms about compensation help prevent disputes over money, especially regarding the use of a care recipient's funds for caregiving needs.
Legal Protection
Legal Standing: The contract gives legal legitimacy to the caregiving arrangement, which can be important for tax purposes and long-term care planning.
Healthcare Decisions: It can include provisions for decision-making authority in healthcare matters, ensuring the caregiver’s role is recognized by medical professionals. Healthcare professionals, governed by HIPAA regulations, must adhere to strict guidelines when handling sensitive patient information, highlighting the legal responsibilities and limitations in sharing private health data.
Supports the Caregiver's Well-being
Recognition of Effort: The contract acknowledges the caregiver's contributions, which can be crucial for their emotional well-being and self-esteem.
Work-Life Balance: It can set boundaries for the caregiver's time and responsibilities, promoting a healthier work-life balance.
Government Benefit Eligibility
Medicaid Considerations: Properly structured contracts can help in Medicaid planning, ensuring that caregiver compensation is not viewed as a "gift" which could affect the care recipient's eligibility for certain benefits.
Tax Benefits: In some cases, it allows tax deductions for the care recipient and payroll tax considerations for the caregiver.
Promotes Family Harmony
Equal Involvement: It encourages discussions and involvement of all family members, promoting a more balanced and harmonious family dynamic.
Clear Expectations: The contract sets clear expectations, reducing the burden on the caregiver and the likelihood of disputes among siblings or other family members.
Flexibility for Future Changes
Adaptable Terms: The contract can be revised as the caregiving situation changes, allowing for adjustments in duties, hours, and compensation.
Prepares for Long-Term Needs: It helps in planning for the long-term care needs of the care recipient, adapting to their evolving health conditions.
A Care Team Partner Support Group provides practical support
Professionalizing Caregiving
Professional Approach: It brings a level of professionalism to family caregiving, ensuring that the caregiver is recognized and treated as a crucial part of the care recipient's support system.
Training and Support: The contract can stipulate provisions for the caregiver's training and support needs, ensuring they are equipped to provide the best care possible.
Implementing a family caregiving contract is a proactive step that benefits all parties involved. It brings structure, clarity, and recognition to the caregiving role within the family, ensuring that the caregiver is fairly compensated and supported, while also maintaining harmony within the family dynamics. This formal agreement is an essential tool in managing the complex realities of family caregiving.
Protecting the Care Recipient from Family Strife
As a caregiver, it's crucial to shield the care recipient from any family tensions. Discussions about family disagreements or frustrations should not burden the person requiring care. Instead, finding external support systems for these discussions is advisable.
Self-Care and Seeking Support
The importance of self-care cannot be overstated. Caregivers often neglect their own health and well-being, leading to physical and emotional strain. Practices like respite care, joining a support group, and engaging in activities that replenish your energy are vital. Trained professionals, such as therapists and nurses, can provide essential care and support at home. Remember, being a caregiver does not mean you have to do it alone. Seeking support from healthcare providers, trained caregivers, and mental health professionals is essential for maintaining your well-being.
Moving Forward
As you navigate this difficult period, remember to prioritize your emotional and physical health. The journey of caregiving is arduous, and the aftermath can be equally challenging, especially when dealing with family conflicts and legal issues. Rely on your support network, including close friends and professional advisors, to help you through this time. Consider reaching out to organizations like the Caregiver Action Network for additional resources and support.
The path you’ve walked as a caregiver is one of strength and compassion. While the challenges you faced were significant, your commitment to your mother’s care was an act of profound love and dedication. It’s crucial to recognize the value of what you’ve done, despite the misunderstandings or accusations from others. Remember, you are not alone in this journey, and there are resources and communities that understand and support your role as a caregiver.
Stress Buster Self Care Tool Kit
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