THE HIDDEN COSTS OF CAREGIVING

Stressed businesswoman

Stressed businesswoman

According to the the National Alliance for Caregiving and AARP (2012), 65.7 million caregivers make up 29 percent of the US adult population and provide care to someone who is ill, disabled, or aged. Eighty percent of the care provided to the elderly in the United States is still provided exclusively by family members (2011 study conducted by the John Hancock insurance company). While there are many positives regarding caregiving, caring for an aging parent or loved one also brings a host of pressures that bear on your time, finances, emotions and overall health. Most people do not understand and are not prepared for the unique requirements involved in caring for an aging loved one.

Time

One of the biggest challenges is the time commitment. Caregiving can be a time-intensive task. In general, the older the care recipient, the more time per week will be dedicated to caregiving tasks. On average, a person 55 to 64 years old will require 25.3 hours per week. This increases to 34.5 hours per week for someone over 75.

Financial

The financial cost can also be substantial. Data from 2013 (most recent available numbers) show the national average cost of a private nursing home room was $252 a day/$91,980 annually and has risen an average of 3.5 percent annually over the last several years;

The average cost for a month in an assisted living facility was $3,496 a month/$41,952 annually and has risen an average 3.4 percent per year;

The average cost for a home health aide was $22 hourly/$41,184 annually and has risen an average 1.3 percent per year.

In addition to the cash outlay there is also the consideration of how much is lost by virtue of money not generated because you are caring for a loved one. According to a recent study conducted by Metlife’s Mature Market group, 10 million caregivers over age 50 who care for their parents lose an estimated $3 trillion in lost wages, pensions, retirement funds and benefits. The total costs are higher for women who lose an estimated $324,044 because of caregiving, compared to men at $283,716.

Lost wages for women who leave the workforce early because of caregiving responsibilities equals $142,693; for Social Security benefits an estimated $131,351 is lost; and for pensions, an estimated $50,000. Because many women have prioritized caregiving over work they suffer long-term consequences, resulting in lower wages, fewer benefits, and reduced retirement savings. In some ways this is similar to women who leave the workforce in order to start or raise a family. Years later, these women are at a 4.6 times higher risk of living in poverty.

Caregiver Health

What is more important that the financial cost is the cost associated with the caregiver’s health and well-being.  Often when focusing on caring for parents, we forget that we must also care for ourselves.  Like many things in life this is easier said than done, but if not done the consequences can be severe.

The close relationship between the caregiver and care recipient is a shared relationship that involves emotions and experiences. As a result, it can place a caregiver at higher risk for psychological and physical illnesses. For example, a 2009 study reported that caring for people with dementia impacts a person’s immune system for up to three years after their caregiving experience ends, thus increasing their chances of developing a chronic illness themselves.

Eleven percent of family caregivers report that caregiving has caused their physical health to deteriorate. In general, 17 percent of caregivers report that their health has gotten worse as a result of their caregiving responsibilities. Those who are more likely to rate the physical strain of caregiving as high are female (17 percent versus 10 percent males). Again, females are disproportionately impacted.

A separate but closely related illness frequently associated with caregiving is depression. For some caregivers, emotional fallout from caring for an ailing parent goes beyond stress and into the realm of depression. According to a 2006 research study from the Family Caregiver Alliance, 40 to 70 percent of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression. This is particularly true for women, who are more prone to the illness, and for those who are caring for someone with dementia.

No matter how much you love the person you look after, it is not surprising for a caregiver to get depressed periodically. It becomes a concern when the symptoms are frequent or long lasting. Depression is a treatable illness. The first step is recognizing that there is an issue and deciding to do something about it.  A proper diagnosis of depression and of the kind of depression you may be experiencing, is crucial in determining the best treatment program.

Living with a care recipient can also negatively impact the health of the caregiver. Twenty-nine percent of caregivers who live with the care recipient rate the physical strain of caregiving as high versus 11 percent who don’t live with the person to whom they provide care. Again, caregiving can be a stressful job, and like other stressful activities, you need to periodically remove yourself from the situation and decompress.

When you live with the person you are probably on call 24 hours a day, seven days a week. It is advisable for these caregivers to have someone else step in periodically to give them a break. Even if it is a very short break (two hours for a movie or a night out), it is important to get away from the situation and recharge your batteries. Friends and family are normally good resources for this. If you don’t know anyone you would feel comfortable asking to help, most home health care agencies will provide someone for respite care. This is short-term, temporary care, which could last for anywhere from a couple of hours to a month. It depends on your needs.

HOW TO PREVENT CAREGIVER BURNOUT

Two women outdoors smiling

Two women outdoors smiling

The importance of remembering to, and prioritizing caring for yourself – especially when caring for others – cannot be overstated. You must make your own well-being a high priority. Even though caring for yourself may seem like one more thing on an already overcrowded to-do list, it may become the single most important thing on that list.

How To Practice Self-Care

Care for yourself and ask others for help when necessary.  It has been observed that our generation cares for elderly parents differently than previous generations. We seek help from others and share our feelings, issues, and concerns. Previous generations silently soldiered on. We talk about personal matters that would have embarrassed our parents, and we are more likely to explore counseling or confide in friends. Our generation has matured with a different mind-set. Many of us believe that the ability to ask for help is not a sign of weakness, but a sign of self confidence and therefore strength.

Monitor stress levels. Specifically regarding your stress levels, you may not be able to control life, but you can control how you react to it.  Train yourself to recognize thoughts that will lead to stress. For example, any sentence that begins “I should…” is a sign of internal conflict. Do your best to retrain yourself and avoid those statements.  Changing your reactions can do a lot to reduce your levels of anxiety. The first step is to listen to your body and recognize the common symptoms of stress:

  • Feeling scared, sad, or moody
  • Crying more than is normal for you
  • Having low energy
  • Having issues with your immune system
  • Feeling like you don’t have any time for yourself anymore
  • Changes in sleeping patterns (insomnia or sleeping too much)
  • Changes in eating patterns (having no appetite or overeating)
  • Isolating yourself from friends and family
  • Losing interest in hobbies
  • Feelings of anger or resentment toward the person you are caring for

All of these feelings are normal and can occur from time to time as you care for someone. The important thing to remember is to take care of yourself as well. Again, you are no good to others if you’re stressed out and ultimately become sick.

When you realize you are getting overwhelmed, these tips may help:

  • Take deep breaths
  • Leave the room (you can say you need to use the bathroom) and count slowly to 20
  • Listen to music with gentle sounds and soft rhythms
  • Take a nap (time permitting)
  • Exercise regularly
  • Consciously relax each tense muscle from your toes to your forehead
  • When you have more time, practice some basic relaxation meditation or visualization techniques to help restore your equilibrium

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Consider this analogy – when flight attendants go through the safety briefing before a plane takes off they tell you that in case of emergency, place the oxygen mask on yourself before you place it on someone else. The logic is simple—you can’t save someone else if you have passed out from oxygen deprivation. The same concept applies in caregiving.

You must make your own well-being a high priority.  By taking care of yourself you are enabling yourself to take better care of your loved ones.  Some people process this as being selfish. It is not. It is essential. Also by asking for help when you need it, you are doing what is healthy and better positioning yourself to be a more effective caregiver.

How Adult Daycare Saved My Family

Mother and daughter

Mother and daughter

 

Dear Mr. Eldercare101:

Thank you for the work you do. You helped save my family. About 5 years ago my grandmother, who is 80, starting showing signs that something was wrong. My parents took her to a few doctors and seemed more depressed every time they came home. One day at dinner dad told me that grandma had dementia and it was the reason she was having trouble remembering things. I didn’t really understand what it was but I remember seeing a look on mom’s face that I’d never seen before. She was also really quiet-which at the time was not like her (unfortunately, it soon became pretty normal for her).

Grandma used to meet me every day after school and would wait with me until mom got home from work. One day she forgot to meet me. Grandma was getting worse. Mom stopped working soon after that. Mom, who used to always laugh and make jokes started to change. Soon she became quiet and would get angry all the time. After a while it seemed like we only heard her voice when she was yelling at someone (even Dad). Mom and I used to talk about stuff but soon she didn’t seem to have time or interest in anything other than caring for grandma. I tried to help around the house but she never seemed happy with the way I did things. Dad kept telling me it wasn’t “personal”, but it sure felt like it. Dad said mom was just tired but I heard them argue a lot about the way she treated me. Eventually, dad told me that mom was just depressed.

Dad wasn’t around too much either because he got a part-time job to make up some of the money we lost when mom quit her job. Now when mom and dad talked it almost always ended in an argument. I couldn’t decide which was worse-the quiet or the arguments.

Mom’s doctor suggested grandma go to a nursing home but mom freaked out so bad that she had to spend the night in the hospital to “get some rest”. When I asked dad if grandma would be moving away he said “no”, because mom would feel too guilty. The worse grandma became, the worse mom became, the worse our house became.

Then things changed and started getting better. Dad heard you on a radio interview talking about Adult Daycare programs and how they help people. You said older people could get care during the day and go home at night. Dad and the doctor convinced mom to try it out. A van picks grandma up in the morning and brings her back in time for dinner. She is around a lot of people during the day (not just mom) and seems to like it.

It’s been about 7 months since she started going there and things are getting back to normal. Mom now has a part-time job and is happier. She is not quit her old self, but she is now much nicer and not so tired and angry all the time. Her and dad are getting along better and not arguing like before. This year I even bought mom a Mother’s Day card (I didn’t the last 2 years). Thank you for telling people about Adult Daycare Centers. It helped our family start to be a family again.

Sincerely,

xxxxxxxxxxxxx

Derrick McDaniel (A.K.A. Mr. Eldercare 101) works with caregivers to help them get the absolute best care possible for their loved ones while simultaneously caring for themselves, their families, and their careers.

7 Ways To Tell If Mom Or Dad Is Starting To Need Help

Today everyone is “over-scheduled”. This is especially true when you have young kids, older parents or both-which is the situation for almost 50% of caregivers to the elderly. Between work, kids, social/civic obligations etc. most people struggle to keep track of what day it is and where they need to be for their next appointment.
Because people are so busy, it’s not unusual to miss the signs that Mom or Dad might be getting to a stage when they need a little extra help. Below are some tips to recognize when it might be time to get or provide them a little extra assistance.
1) Look for signs around the house. Pay attention to the living areas. If the house is normally immaculate look for signs that regular cleaning may not be occurring. This could mean that cleaning is becoming too difficult. Look for stacks of, or unopened mail. This might indicate that someone is having difficulty seeing or is depressed. Also, look for things like laundry or dishes piling up. The weight of the clothes, difficulty loading the dishwasher, or standing for extended periods could be responsible. Check out the yard and exterior condition of the house. Look for signs that regular maintenance and upkeep is not occurring. These can all be signs that simple household tasks are becoming too difficult and some level of intervention is or soon will become necessary.
2) Eating regularly/properly. Schedule a meal with your parents. In their home is best (if it can be arranged without arousing suspicion). This provides an opportunity to see how and how much they eat. If necessary, offer to prepare or bring the meal with you. Have them help you with food preparation or setting the table. You’ll see how long they can stand and their ability to manage simple cooking or dining tasks. If they are having difficulty helping you, then you can reasonably assume they’ll have difficulty feeding themselves when alone. Remember, proper eating habits and nutrition is essential for everyone but especially for the elderly-who in addition to having normal nutritional needs, are also likely taking medications which require food.
3) Walking. The weather is getting nicer so it’s the perfect time to get your loved one out for a walk. Fresh air is always great but a walk will allow you to see how steady they are on their feet, how far they can walk, and whether being on their feet for an extended period of time causes residual issues.
4) Driving. If your loved one still drives inspect the car when you visit and periodically go for a ride with them. See how they handle the car; whether they drive the appropriate speed, get frazzled or frustrated easily, and whether they remember to use appropriate signals. If they are having difficulties- for their safety and others on the road-you may need to speak with them about alternative means of transportation (from experience, this will not be a simple or single conversation).
5) Phone. When you can’t visit someone the telephone may help you determine how they are doing. Call your loved ones regularly and speak for a few minutes. See if they: engage; speak at an appropriate speed and volume; follow the flow of conversation; and can have a “normal” phone call. If you get concerned, you can “test” them by asking the same questions in different conversations. See if you get the same responses and if they remember that you keep asking the same questions.
6) Attitude and Disposition. When talking to, or spending time with your loved one pay special attention to their disposition and how they act or react to various stimuli. For example, if your favorite aunt-who has always had an upbeat personality is now quiet and withdrawn this may be an indication that something is wrong. Admittedly, we all have bad days. Don’t put too much emphasis on any one statement or interaction, but be mindful and observe whether a pattern has formed. If so, it could be any of several things (depression, frustration, loneliness, pharmacological, etc.). It’s important is to be conscious of the change and provide whatever support or assistance is necessary. This includes having her examined by an appropriate medical professional.
7) Ask them. Finally, we leave the simplest technique for last. Simply ask them if they need help. You might get lucky and they admit they’re having difficulties. This doesn’t happen often, but when it does it’s usually followed by sincere appreciation that you took an interest in them and their well-being. FYI, even when they don’t say it, they ALWAYS appreciate you looking after them (and you feel great too). Good luck on your caregiving journeys.

From Freedom to Dependency for the Elderly, the Difficult Family Talk

When parents are no longer able to take care of themselves, their relatives must make the decisions about their long termcare. But how do we approach these uneasy conversations?

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who spend time with elderly loved ones will notice that they are starting to decline and may need help around the house.  Some folks will be lucky and their loved one will ask for help and a difficult conversation will be avoided.  But the vast majority will not have it this easy.  They will have to struggle with the issue of how to approach mom or dad and have the “care is needed” conversation.

If you have elderly loved ones you have had this conversation or eventually will.  Right now almost one in three U.S. adults is a caregiver and 47% of adults surveyed expect to provide care to an elderly loved one at some point during their lives.  A lot of us will face this issue.  As caregivers we are concerned about our parents’ health and well-being while they are concerned about maintaining their independence and dignity.  It quickly becomes complicated because emotions are involved as well as traditional familial roles and history.  Too frequently, conversations are avoided for these same reasons-until a crisis occurs and people are forced to deal with the situation.

Having the initial conversation about whether help is necessary is usually one of the most difficult and anxiety provoking aspects of caring for an elderly loved one.  People who have had both the “sex” talk with their kids and the “care is needed” talk with their parents routinely say the latter is more difficult.  Getting a person who was once young, active, and independent to accept that those days are in the rearview mirror is difficult.

Here’s a typical example: something triggers a concern for mom’s wellbeing — laundry or mail piling up, her losing weight, difficulty with bathing, walking or standing etc. — then comes the task of getting her to recognize it and accept help.   You bring up the topic and she shuts you down.  At some point she reminds you that “she raised you”, or in many cases accusations start to fly like “you just want to control me.”   No matter how it unfolds the goal of the conversation is to reach agreement and get her the assistance she needs.   FYI, this is normally not a “one and done” conversation.  The conversations will likely happen in bits and pieces and take an extended period of time. Expect that most older adults will not easily accept that they now need help to safely make it through the day.  It’s normal for the initial conversations to be difficult and uncomfortable. Subsequent conversations might also be tense — but they are necessary.

The discussions will go better if they happen before a crisis forces everyone to make decisions on the fly. Without that pressure, family members can work to ensure that everyone’s fears and anxieties are addressed and that no one feels demeaned, diminished, or excluded.  Here are a few suggestions that may help you get started:

  • Take advantage of opportunities to initiate a conversation. If mom starts to mention that walking is getting more difficult and she’s having trouble standing for long periods of time, this may be your opportunity to start “the talk.” You may not get a perfect opportunity, so be open to “good-enough” opportunities
  • Misdirection is sometimes a way to start the conversation. Perhaps start talking about the father of someone you work with. Mention how a crisis situation occurred and the difficulties it caused for that elderly person and their family (but be sure not to imply he was a burden to his family). See where the conversation goes. It may open the door for you and your dad to have a productive discussion.
  • Be sensitive to your elderly parent’s position and remember when communicating there is a generational divide to consider.   Approach your parent and the conversation with an open mind. Listen to them so that you get a sense of where they are in the process, mentally and emotionally. You may also get lucky and find out that they have already begun to make preparations for themselves.
  • Try to keep it casual and focused. If they are resistant the conversation can quickly and easily refocus and shift to you, your relationship with them, or your role within the family.  The more intense the conversation, the more likely this will happen. Try not to let this become confrontational.
  • Remind them and yourself that the ultimate goal is to help them. This will become especially important if the conversation becomes heated or confrontational.
  • Tell them you love them and care about their well being and safety; then ask them how they are doing. Starting this way will likely open the door for conversation. If you see them becoming defensive, back off a little, but remember that they just gave you a clue as to how future conversations on this topic will likely go.

 

Regardless of the family’s culture or the difficulties, make it a point to have discussions with your elderly loved ones.  Also, be sure to have conversations with siblings to make sure there are no assumptions that will cause discord or hurt feelings. However you initiate the topic, try your best to keep the focus on your elders and their needs. Remember, it is not a surprise to them that they are getting older and will likely require assistance. No matter what they say, they appreciate your help. The more they are able to maintain their dignity, the easier it will be for them and for you.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.

Family Fracas: When Taking Care of a Parent Causes Grief Between Siblings

The care of an elderly mother or father can create divisions between relatives, but if everyone is willing to listen to each other, lots of drama can be avoided

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The widowed matriarch of the Carter* family, who suffered a stroke in early 2015, now requires a significant amount of care.  In consulting with them, I found them discussing the “pros” and “cons” of various long-term care options.  Immediately, it became obvious that the “real” issue wasn’t lack of information but family history and dynamics.  The siblings, all good and well-intentioned people, were not able agree on much of anything and therefore weren’t moving forward.

They were too busy arguing and resenting each other to come to consensus regarding their mom’s care.  As a result decisions were either delayed or not made.  Essentially, their mother’s care become hostage to their sibling drama.   Normally in situations like this it’s not about “good” or “bad” people-it’s usually more about perspective.

There are two sons and an older daughter (from their mother’s first marriage).  They all love and care for their mom — who has some assets but is not wealthy.  Unfortunately, their mom never communicated (either verbally or in writing) what type of care she would want if she were ever not able to communicate for herself.

This is where the arguments began.

Eric, the middle child, lives in New Jersey — five minutes from mom’s house.  He works on weekends but has the flexibility to go back and forth.  Karl, the youngest child, is a single professional and lives in New York and is just starting his career.  Bobbi, is the oldest sibling but lives in another state with her family.  Again, all three very much care for their mother but have slightly different relationships with her and very different perspectives based upon what’s going on in their own lives.

In eldercare it’s typical for 95% of the caregiving efforts to be provided by one person. Eric, because of close physical proximity had traditionally been responsible for mom but since the stroke has become overwhelmed and resentful of his siblings’ lack of assistance.

Karl is focused on his career and works long hours. This creates tension between the two brothers because Eric feels that Karl should dedicate more time to helping with mom.  Karl tries to visit/help on weekends but lives an hour away, often works at least one day on the weekend, and doesn’t fully appreciate Eric’s workload. The way he sees it, Eric lives five minutes away and only has a part-time job and consequently can easily be available when their mother needs something.

Then factor in Bobbi, the eldest, who only sees their mom about once a year.  Because she’s the oldest by several years, growing up she was often left “in charge.”  Now, years later, she still believes that her brothers should listen to her on important matters.  While they both respect and love their sister, both Eric and Karl feel that since Bobbi is not involved in the caregiving and only sees their mother once a year, she is too far removed from the situation to call the shots.  Again, each of the siblings loves the other, loves mom, and wants the best for her. Love is not the issue.  To avoid arguments they’d mostly stopped sharing their feelings and this allowed tensions to build.

Communication is usually the key minimizing or eliminating family issues.  First, a large part of the situation was caused by their mom never communicating what she wanted for her own care.  Then, each of the siblings had their opinions based at least partially on their individual situations.  Unfortunately, none of them realized or communicated that their own perspectives played a role in what they thought and how they viewed each other.

In the case of the brothers, while loving, they are very different –as evidenced by their life choices.  From childhood they saw the world differently.  Previously they agreed to disagree.  No big deal.  Now as they needed to care for their mother it became obvious that not only did they not agree with each other’s lifestyles, they didn’t respect the others choice about what was most important-work or family.  Bobbi had the least contact with mom because of geography (and some unresolved issues).  Since childhood she was accustomed to having the final word between the siblings; this was especially true on important matters.

Eldercare related matters can often be stressful and require dynamic decision making with incomplete information.  In times like these some individuals revert back into old patterns of behavior through habit.

After consulting with the family we were pretty quickly able to resolve their issues once they were identified.  Mostly it came down to frequent, clear, and honest communication with the focus always being on what care was best for mom.

So how did they solve a problem that has a tendency to break families apart and cause strained relationships and avoidable stress?

What it took was some really honest interaction between the siblings. After getting an understanding of their individual situations, they first agreed to do what was best for their mother and not most convenient for themselves.

They then instituted frequent conference calls so everyone had the same information at the same time and no one was ever excluded from a conversation. They also began sharing tasks based upon ability to resolve the issue.

For example, Karl now handles anything having to do with insurance, or paperwork, etc., and comes over at least two weekends per month; Bobbi handles most things that can be done via phone or internet like orders groceries, pays bills, schedules appointments; meanwhile Eric still handles most of the day-to-day tasks but now has significantly more time because his siblings are now actively involved.

Opening the lines of communication and getting everyone actively involved reduced tensions, made everyone feel like they were contributing, and helped each sibling develop an appreciation for the other’s perspective.   As result the siblings are becoming even closer while bonding over mom’s care.   Additionally, mom now has three caregivers focused on making sure she receives all the care and services she needs.

Relationships just are the way they are.  The simple truth is that some of these issues can be resolved and others can’t.  No matter which category you and your family fall into what’s most important is that the focus remain on getting and maintaining the best possible care for your loved one.

*Names have been changed for privacy purposes.

Derrick Y. McDaniel is the author of Eldercare: The Esssential Guide to Caring for Your Loved One and Yourself and founder of Caring Hearts Homecare of New Jersey. Follow him on Twitter @MrElderCare101.