Being a family caregiver is a role that requires, at minimum, patience, knowledge, and the ability to seek out and obtain support. While caregiving is hard for the majority of individuals, regardless of age, it can be especially difficult for individuals between the ages of 18-30. Such caregivers, whom I will refer to as Young Caregivers, usually face issues that older caregivers have already had time to intellectually, emotionally and spiritually navigate. Such problems can include the following:
The Ability to Build a Support Network - building a support network when someone is in their late teens and early thirties generally requires the ability to be present at various events and outings. Activities like going to the movies, attending school events, going to parties or even just having the ability to live on-campus are just a few of the affairs/milestones that are often sacrificed by a young caregiver. By not engaging in such activities, it can result in the loss of existing friends as many non-caregiving peers will either not understand or can misinterpret the caregivers' absence. Perceived lack of interest can lead to harsh critique as well as fewer invites to future events, which will ultimately impede on the ability to maintain and build new friendships.
Making Decisions for their Future - for many young individuals, the ability to decide where to go to school and what career field to pursue is usually only limited to financial restraints, location, passion and/or interests. For young caregivers, however, they also have to take into consideration the person they are caring for. In other words, deciding if and where they can go to college is usually reliant on whether they have someone else to care for their loved one. Factors like being able to find and trust someone else to provide care, being able to afford services that may be needed, and/or dealing with cultural/familial obligations all play a role in their decision.
Another major factor, is the prognosis of their loved one's illness, especially if it is a terminal one. In such cases, deciding what to prioritize, their future or their loved one's condition, can weigh heavily on one's decision regarding future endeavors. A decision that can often be riddled with guilt and resentment.
Being Fully Present in a Relationship - one of the most common complaints I hear from both younger and older caregivers is the toll that caregiving takes on an intimate relationship. The ability to be fully present with a partner is often hindered by needing to tend to a loved one, venting about the frustration of caring for another person, and/or feeling anxious or depressed due to caregiving responsibilities. For young caregivers, however, they are also learning more about who they are as individuals both independently and within a relationship. Being a young caregiver, often means losing the opportunity to learn about oneself as reflected within a relationship. Anxiety and depression can also become common when the strain of caregiving impedes on the ability for a relationship to thrive and results in premature breakups.
Juggling School and/or Work - aside from managing the task of being a caregiver, finding time to study, attend class, finish projects at work, or even finding a job that works with one's caregiving schedule are other issues that young caregivers face. Figuring out how to best juggle these responsibilities is often a matter of trial and error and can result in feelings of anxiety and depression. Without the proper support, such stress can cause a young caregiver to drop out of school or lose a job.
Being a young caregiver, as with any caregiver of any age, is often overlooked and not fully understood by others. In my next blog post, I will discuss strategies young caregivers can implement to cope with the problems mentioned above. Be sure to sign up to receive my blog posts (above) via email so you don't miss it!
Are you a young caregiver? Can you relate to any of the hardships mentioned above? If so, feel free to share your thoughts.
Have you ever said, "My brother doesn't believe mom has dementia" or "My sister insists my mother is fine and I’m just overreacting" or "My brother and sister don’t help out as much as I need them to." If you are caring for a parent and have siblings, chances are you have said one of these statements or some version of it. As you may already know, being a family caregiver comes with a lot of challenges. A few of the challenges faced by siblings caring for a parent generally entail trying to get everyone to agree on a care plan or simply accepting a parent's diagnosis. And while factors like distance, sibling rivalries and estranged relationships can make a challenging situation seem nearly impossible to resolve, it is important to not overlook some of the basic reasons your sibling may not be "on the same page."
Reason #1-Your sibling is only getting a snapshot of the situation
For siblings who live at least an hour away from their parents or have a hectic schedule, they may find it easier to keep tabs with them via phone. While this is a great way to keep up-to-date with what is going on in a parent's life, it doesn't allow for a detailed view of things like cleanliness of home, medication adherence, personal hygiene, etc. As a result, when they are told by a sibling that mom/dad are not well, a common response can be, "Mom is just fine. I spoke with her yesterday and she sounded okay." Should you get such a response, don't immediately interpret it as a refusal to believe you. Instead, talk specifically about the changes you are noticing with your parent with regard to the home, finances, social life, etc. Doing so can give your sibling a better view of the entire picture and hopefully get them on board to assist. If your sibling does get on board, check out the post "I Am Worried About My Loved One" for some next steps to consider.
Reason #2- Your brother/sister may be in denial
Denial, for some adult children, is used as a defense mechanism for a variety of reasons including adjusting to mom or dad's need for assistance or coping with changing roles. Fear can also play a huge role in preventing some siblings to accept what's going on and inadvertently create a barrier to assisting with caring for your parents. One of the best things you can do for a sibling you believe is in denial is to give him/her time and space for the change to sink in. Insisting or arguing with your sibling about who is right and wrong will simply push him/her away. How much time you give your sibling depends on factors like his/her personality, upbringing, resiliency and relationship with your parent.
Reason #3 Your sibling is not emotionally capable of dealing with the situation
A big part of being a caregiver is the ability to come to terms with what is in front of you and forging ahead with a plan of action. For some siblings, however, they're unable to emotionally handle such a responsibility for a variety of reasons. And rather than relay those reasons to you, they may instead withdraw from the situation and make it appear as if they don't care.
Barring any past conflicts, sibling rivalries, estranged relationships, etc., you may have to realize that your sibling may not be strong enough to cope with what is going on. Yes, you yourself may not be as strong but since you are the person stepping-up to the plate you need to ask yourself "How much time and energy can I afford to devote to trying to convince my sibling to help with our parent(s)?"
Your answer lies in your response to this question. If you have time to spare and want to spend it trying to convince your sibling why they should be more involved, then by all means go ahead. But in my experience, many caregivers, especially primary caregivers, rarely have time to spare, and if they do I generally advocate that they spend it by taking care of themselves.
Ultimately, caring for a parent is difficult and yes we would like to have as many people on deck to help out, especially our own siblings. The reality, however, is that the caregiving role never plays out the way we envision it and for our own health and sanity we have to make wise decisions about which battles we choose to fight.
If you would like to share tips or suggestions regarding sibling conflicts and caregiving, please do so below.
There comes a time for many older adults, when taking medications becomes a new norm. This new "norm", however, can often be accompanied with confusion and/or forgetfulness regarding how and when to properly take their medications. The result of such confusion, whether attributed to a busy lifestyle or cognitive impairment may be hazardous to one's health. In order to increase the likelihood your loved one is taking his/her medications properly and on time, you may want to consider the following suggestions...
1). Learn About Your Loved One's Medications - find out what types of medications your loved one is taking, including prescribed, over-the-counter drugs, herbal supplements and vitamins. Learning this information, as well as why your loved one is taking them, how long they will be taking them and potential side effects, can give you a better understanding of what your loved one's medication routine looks like. It can also help you keep track of its usage.
2). Create A List - compose a list of all medications as well as the dosage amount, number of refills left and the contact information of the doctor who prescribed the medication. This information can prove pertinent throughout your caregiving journey when requesting refills, consulting with other healthcare professionals and/or having to relay pertinent information in an emergency.
3). Review The List With The Medical Team - depending on your level of involvement and your understanding of the medications prescribed, you may find it helpful to regularly review your loved one's medication list with his/her medical team. This is especially important if your loved one has various medical professionals involved in his/her care. Essentially, you want to ensure the list's accuracy, necessity and potentially remove any drugs that are no longer needed or have a potential of harmful interaction.
4). Explore Available Options - there are many options available to individuals who have difficulty accessing or taking their medications. For example, easy-open bottles or large print labels are generally available through pharmacies for individuals who have trouble opening the bottles or reading the labels.
For individuals who forget to take their medications on time, some families find it helpful to set an alarm, make calls to remind their loved one to take the medication, or purchase a medication dispenser - a device that allows individuals to organize medication and in some cases, to set a time for automatic dispension.
Lastly, for individuals with severe cognitive impairement the aformentioned recommendations may not be effective. Generally, the best way to assure a loved one with severe cognitive impairment is taking his/her medications is to have someone physically present.
Do you have other recommendations you would like to share about what has worked for you and your family? Please share them below.
Recently, I was interviewed by Carol Bradley Bursack, founder of Minding Our Elders, for an article she was writing about compassion fatigue. During this interview, she asked me to define compassion fatigue and identify some of the warning signs family caregivers can look out for as they are providing care to a loved one. Below is information I provided her with along with proactive steps caregivers can take to try to prevent compassion fatigue.
Compassion fatigue is an extreme state of great tension and stress that can result in feelings of hopelessness, indifference, pessimism and overall disinterest in other people's issues.
With regard to caregivers, compassion fatigue can manifest itself through actions like yelling, hitting, neglecting a loved one, etc. Basically, any action that is not characteristic of a caregiver's typical behavior but is now present and consistent. While some may simplify and attribute this change in behavior to frustration and/or resentment, it is important to understand that compassion fatigue is not something that occurs overnight. It is the result of days, weeks, months and years of managing caregiving responsibilities that are often unrecognized, emotionally demanding, physically exhausting and seem endless. As a result, it is not uncommon for feelings of frustration, resentment, hopelessness, guilt and/or a diminished sense of self to manifest.
Being proactive is one of the best ways to combat compassion fatigue or at least prevent it from getting out of hand. First and foremost, be aware of the warning signs:
Being aware of the changes in your behavior is the first step. The next step is to begin making yourself a priority and tend to, at the very least, some of your needs. While many caregivers feel this is impossible to do, it is important to understand that if you don't make time for yourself, no one else will. Start by allocating, at minimum, five minutes in your day to eat, pray, dance, laugh, walk, sing, read an inspirational quote, meditate, chat with a friend, the list can go on and on. My point is to give yourself a mental and physical break from actively caring for a loved one. The ability to do so in small bursts can allow you to begin the practice of caring for yourself and hopefully get you to do more of it in the future.
Having a non-judgmental outlet to express your thoughts can also prevent compassion fatigue. Outlets like a personal journal, talking with a confidant, or seeking advice from a healthcare professional can help you with processing your feelings and offer a safe place to release your pent up feelings.
If you find yourself already experiencing compassion fatigue, then let others know and seek professional help. Believing it will subside, especially while you are still actively caring for a loved one, can cause some individuals to become depressed, develop panic attacks and/or potentially put their loved one in harm's way.
Do you have any questions about preventing compassion fatigue or how to better care for yourself? Feel free to ask them below.
When planning for the future, most people willingly envision and plan for positive events like marriage, parenthood, retirement, etc. Events that are not often planned for, however, are the life-altering events that affect a person's ability to make decisions for him/herself. And while it is understandable why such issues are not willingly discussed, it is important to know that it could lead to days, weeks or months of emotional distress, financial strain and/or family conflict. In order to avoid the potential of such distress, it important to at least be aware of the term advanced directives and what legal documents exist in order to reduce the potential for conflict.
Advanced directives are documents created for the purpose of planning ahead and ensuring you and your family's needs are properly arranged for. Basic documents like a Health care proxy, a Living Will and Power of Attorney are documents that can ensure you and your loved one’s wishes are honored.
Health Care Proxy, also referred to as Medical Power of Attorney, is a legal document whereby a person is appointed to make medical decisions for another individual. For example, if your loved one suffers a stroke and becomes disoriented, a health care proxy would give you the legal ability to make medical decisions about his/her care.
Living Will is ideal for individuals who want to have their wishes in writing either because they do not have anyone to designate as proxy or because they hold strong convictions about the level of care they do/do not want.
Power of Attorney gives an appointed person the ability to handle another person’s finances. A durable power of attorney, specifically, allows the chosen individual to handle a person's finances even after the individual is no longer competent. Simple tasks like getting a new bank card for Mom or using Dad’s money to pay for his own medical care are more easily accomplished when a person is an appointed power of attorney.
HOW TO GET THESE FORMS - depending on the state you live in, getting the above forms can be as simple as speaking with your physician and/or with a social worker. The Power of Attorney forms can generally be obtained from an attorney. While there are versions available online, it is important to verify the document you have is the latest version as laws can change.
For information on Advanced Directives in New Jersey, click here; for New York, click here. For other states, visit www.lawhelp.org. Aside from getting over the hurdle of addressing this issue with your loved one and/or family, educating yourself about what is available can be a great way to start the process of planning ahead.
Have you already planned ahead and obtained any one of these documents? Do you have any advice you can share about having such a conversation with a loved one ? Feel free to share your advice/experience below.
One of the biggest hurdles many family caregivers face is reaching out for help. Between knowing what to ask, when to ask, and whom to ask - taking such action can be challenging. Whether due to uncertainty, reluctance or refusal, not reaching out for help can eventually cause caregiver burnout - the physical, mental or emotional exhaustion that impedes on the ability to provide the best care to a loved one. So, the question becomes, how do you know if you are on the path to burning out and what can you do about it? First we'll start with warning signs:
You Don't Get Sufficient Rest
Caring for another individual, especially a parent, can lead to endless nights of thinking, "What's going to happen to Dad?" or "How am I going to manage caring for my parent as well as work and care for my family?" Such thoughts are common for caregivers to experience throughout the day but for some, they will also experience it when they are finally resting or trying to sleep. This worrying often prevents caregivers from getting the rest they need thereby becoming more exhausted and more overwhelmed.
You Don't Have a Reliable Support Network
Not receiving help from your significant other, siblings, or other relatives could also lead to caregiver burnout. An unreliable support network, not to be confused with your family/friends not fully understanding your caregiving role, can sometimes cause more stress. Whether attributable to family dynamics or past conflicts, lack of support can lead to burnout if not recognized early enough and addressed.
Lack of Support at Work
Caring for a loved one while working can also cause significant stress, especially if your loved one needs constant supervision and/or attention. While it is normal to take a day off from work to tend to childcare needs, some caregivers shy away from taking off when caring for their parents for various reasons. This juggling act between the work and caregiving can be an extremely exhausting and stressful experience, especially if both responsibilities are demanding.
If any of these signs sound familiar, then you should be reaching out for help. Here are some ways you can do so:
Learn About Available Resources
Learn as much as you can about your loved one's medical condition, associated behavioral symptoms, and available community resources. Resources like support groups, respite care and other senior or caregiver-related services can help give you a break by alleviating some of your responsibilities. Being familiar with certain entitlements like the the Family Medical Leave Act can also help alleviate the pressure of juggling work and caring for your loved one.
Ask Friends and Family for Help
Never underestimate how helpful it can be to delegate minuscule tasks to friends, family members or neighbors. From picking up essentials like milk and bread, to driving your loved one to appointments these tasks often prevent caregivers from being able to relax and recuperate. By asking someone else to help you with your daily errands, however, it can reduce how much running around you have to do and give you a chance to "recharge."
Consult with a Geriatric Professional
In many cases, family caregivers try the above and get the break they need but also have a hard time dealing with the stress of knowing their parent(s) are aging or their loved one's health is declining. Sometimes, the only way to address such stress is by contacting a geriatric professional for counseling. And while it may be difficult to pick up the phone and admit you need help, the truth is that by taking such action you can receive help to reduce any anxiety, loneliness, or hopelessness you may feel.
Do you have any questions or thoughts you would like to share? Please do so below.
Recently a frequent reader of my blog suggested I write a post about how a family meeting can help primary caregivers resolve conflicts between siblings and extended relatives. Having experienced conflict among her family, this reader praised how the family meeting allowed each of them to express their concerns, and while not everything was resolved, they came out feeling better. As a health care professional, I've also been witnessed to the benefits that can come from family meetings, and in many cases have facilitated them myself. What should be understood is that family meetings can only be a successful tool if there are certain aspects in place. These aspects, which should be exhibited by everyone who participates, are...
Willingness and Respect
Everyone who attends the meeting should, at the very least, want to attend and respect the viewpoints of other family members/attendees. This is not to say they have to agree with everything that is said, but if they are solely attending the meeting to get others to side with their viewpoint, then it won't work.
A Clear Objective
The purpose for the meeting should be made very clear when inviting people to attend and should also be reviewed at the start of the meeting. Family members/attendees should not show up believing certain topics will be addressed because it could lead to a feeling of mistrust, skepticism and in some cases, complete disregard for what is being said.
Whether this individual is a professional or the most level-headed person in the family, having someone who can make sure the discussion doesn't get too personal can be of great assistance. During family meetings, it is not uncommon for past conflicts or accusations to get in the way of the objective for the meeting. Having a mediator can help refocus the group.
Limiting Your Expectations
Assuming that this meeting will solve everything, will only set you up for disappointment. Any family meeting, especially the first few, will most likely be filled with a lot of clarification, explanation and emotion. Set your goals low but aim high. Once you get a feel for how the meeting is flowing, then you can get a sense for how many topics can be addressed.
While there are no guarantees that a family meeting will resolve your caregiving issues/conflicts, there is a great chance that people who attend a structured, goal-oriented meeting will come out experiencing a greater understanding of another person's viewpoint and a sense of relief. If a plan of action is devised and agreed upon by all, then the meeting was definitely a success!
Have you had a personal experience with a successful family meeting? Are there any do's and dont's you would recommend? If so, please share them below.
Two years ago I worked at the National MS Society-NYC chapter and became familiar with the many struggles that individuals with Multiple Sclerosis (MS) face. It was during my time there, I witnessed the impact this disease has not only on the individual but also on the family and significant others, especially when such individuals are not familiar with the disease. Below is general information I believe many individuals should be aware of so as to raise awareness and increase understanding.
1) Defining Multiple Sclerosis- According to the National MS Society, "Multiple Sclerosis is considered to be an immune-mediated disease in which the body's immune system attacks the central nervous system." While the disease affects everyone differently, common symptoms include fatigue, walking difficulties, numbness or tingling, vision problems, dizziness, vertigo, cognitive changes, etc. For more information about MS-related symptoms, click here.
2) Diagnosing Multiple Sclerosis - Diagnosing MS at this time requires an extensive review of one's medical history along with a series of tests and exams that allows a physician and/or a medical team of various health care professionals to rule out other potential diagnosis. The aforementioned also allows health care professionals to find evidence that meets the current criteria for diagnosing MS. For more information regarding the diagnosis criteria and tools involved in diagnosing MS, click here.
3) Available Resources - Aside from obtaining more information about MS, various organizations offer opportunities for individuals with MS to meet one another, obtain emotional support through support groups and/or apply for financial assistance. The following organizations are just a few that can be helpful in finding available resources in your area - Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National MS Society.
Being aware of the symptoms of MS, as well as the diagnosis process, can help individuals begin the journey of accessing appropriate medical treatment, obtaining any emotional and/or financial support they may need and helping their loved ones understand the physical and emotional symptoms an individual with MS may be experiencing, especially when such symptoms are not visible. Such resources and knowledge can also help to reduce stress that may otherwise cause symptoms to exacerbate.
Are you aware of any other resources that can be beneficial to individuals and their families dealing with MS? If so, please share them below.
Making a decision for a loved one, when they are unable to do so, is without a doubt a stressful experience for many family caregivers. Having to make such a decision with siblings who disagree can cause conflict. And while such conflict is prevalent between siblings, it is also common within stepfamilies. Within the realm of caregiving, a common problem that often presents itself within a stepfamily is distrust. Distrust associated with who has the loved one’s best interest in mind, who is most familiar with the loved one’s wishes, and who is most capable of making a life-changing decision. Barring legal documents like a health care proxy or power of attorney, distrust between an adult child and stepparent, for example, can lead to a lot of arguing, estranged relationships and in some cases legal action. So, what can a stepfamily do to potentially avoid such a turn out? Begin by having a conversation. One of the best ways of preventing extreme results, as those aforementioned, is to open the doors of communication and discuss who is expected to do what. Since approaching such a topic can be challenging, there are a few things you should consider in order to maximize the chances of having a successful conversation.
Don't Be Foolish
First and foremost, don’t be foolish in believing that your family will never face such a situation. Unless there are already legal documents in place, you cannot underestimate how strong of a barrier emotions can be when making a life-changing decision. While this type of discussion should occur in all families, it is definitely a must if your loved one is involved in a new significant relationship or has re-married since your loved one's beliefs regarding long-term care may have changed and relayed only to the new partner.
Don't Be Bashful or Afraid
Beginning such a conversation can be tough and in some cultures it can be viewed as taboo. For some, it can even be anxiety-provoking. It is extremely important, however, to check your priorities by weighing your options. Would you rather deal with 15 minutes of fear when bringing up the topic or days of trying to figure out what decision is best for your loved one while you are in the middle of a crisis?
Make Your Intentions Clear
During your discussion, be sure to be upfront about your reason for bringing up this issue. Maybe it's because you want to make sure your loved one’s assets are protected, ensure his/her wishes are honored, or simply to assure everyone is on the same page about who will be in charge of making decisions. Stating your “agenda” early on can generally alleviate any doubts someone else may have regarding your intention.
Aim to "Plant the Seed"
When planning or having your discussion, don’t expect to leave with everyone in agreement about a plan of action. Since most people generally do not like to think about their own health deterioration, reluctance or even disagreements between family members is to be expected. As a result, you should aim to “plant the seed” and simply ask your loved one to think about the issues you are discussing. At the very least, you want to be able to get an idea of what your role will be in an emergency situation. Will your loved one’s spouse be in charge or will you? Does your parent expect his/her new spouse to relay his/her wishes regarding life-sustaining treatments or do they expect you to do it? Getting the answers to such questions can open the door to communication about other issues that most families often don't think about until it is too late. It can also reduce the amount of tension and friction that can result during times of crisis.
While there are many more recommendations I can list, I would prefer to hear your thoughts regarding what has worked for you or what you would recommend. Please share them below.
A common inquiry I often hear from many family caregivers is, "Where can I find help?" While the "help" they are seeking can range from financial assistance to home care assistance, there are basic resources I initially inform individuals about to get them started. Below are a few of those resources as well as their website links so you can obtain more information.
Area Agency on Aging - if you are interested in learning about what resources are available in a loved one's community, contacting the Area Agency on Aging can help you find local senior resources. I often refer to it as the 411 for Senior services. To find a local Area Agency on Aging in your community, also referred to Department of Aging in NYC, visit www.eldercare.gov.
Lawhelp.org - for individuals and families facing legal issues like housing, immigration, worker's rights, etc., the task of finding free/low cost assistance can be overwhelming. For such individuals, I often recommend a visit to Lawhelp.org to help facilitate the search. While I can by no means attest to the quality and availability of services an individual will find, I do know it has been a valuable resource when I needed to assist various clients in finding local legal assistance programs or organizations.
Medicare and Your Rights - aside from visiting Medicare's government website to learn more about what this insurance program covers, I also encourage individuals and families to visit the Medicare Rights Center. This website is a great resource to obtain information, counseling and advocacy on various issues some people experience with Medicare. Trainings and political updates are also available for those who are interested.
While there are many more resources I can list here, some of them are more specific to a person's individual situation. Are you interested in learning about a particular resource? While my knowledge is limited mostly to the NYC/Central NJ area, feel free to leave an inquiry below and I will do my best to assist.
Christine M. Valentin
As a licensed clinical social worker, I help individuals caring for a loved one reduce feelings of anxiety, depression and stress. This blog is meant to share with you, many of the suggestions I recommend to many family caregivers. Sign up to receive them directly.