Caring for Elderly Parents: 5 Tips for Avoiding Caregiver Burnout

By Roz Jones

Joanne’s mother, Betty, had rheumatoid arthritis for years.  Suddenly and unexpectedly, Betty was disabled by the pain, fatigue and limited mobility that she had feared since her diagnosis.  

Joanne convinced her fiercely independent mother that living alone was no longer an option.  And Joanne, the eldest of four children, knew that caring for her sick mother fell on her shoulders.  Joanne was a legend in the circles of her family, friends and colleagues for her ability to act with grace under pressure.

Joanne took two weeks of vacation from her job and cooked and froze meals for her husband and three children.  As she flew to her hometown, she wondered how she would coordinate her mother’s care from a distance. Supporting her husband as he built his new business, nurturing her kids and directing a major project at work already made her feel that she was running on empty.  

You may relate to Joanne’s story.  One out of four Americans cares for a friend or relative who is sick, disabled or frail. That’s 46 million Americans who offer unpaid help to a loved one.  If they were paid caregivers’ compensation would exceed last year’s Medicare budget! And if you become a caregiver, you, like Joanne, may try to do it alone, shrouded in secrecy. 

Solo caregiving compromises your ability to nurture yourself and others. Let’s take caregiving out from behind closed doors.  For your sake and the sake of those who count on you, please get some help. Caregivers are competent people who feel that they should be able to do this job.  Yet, many soon find themselves unprepared and ill-equipped to manage the sometimes daunting tasks, such as managing a complex medical regimen or remodeling a house so it’s wheel-chair accessible or even finding someone to stay with their loved ones so they can go out to a movie without worrying their relatives will fall on the way to the fridge.

If you are a caregiver, you know that this act of love has its costs.  You stand to forfeit up to $650,000 in lost wages, pension and social security.  Add to that is the personal cost to your well-being, as your new demands leave you less time for your family and friends.  You may give up vacations, hobbies and social activities.  Finally, caregiving places a burden on your health.  Caregivers are at increased risk for depression, anxiety, depressed immune function and even hospitalization.

Instead of reaching out, caregivers become isolated.  Many who assume the caregiving burden fit the profile of the giving family member, like Joanne, who does not want to trouble others with their problems.  Some fear the consequences of disclosing their new demands to coworkers or employers. Caregivers are further challenged by the cultural conspiracy of silence.  Our youth-centered society turns a blind eye to the unpleasant and inevitable reality that all of us age and die.  This leaves both caregivers and care recipients unprepared.  Look no further than the path of Hurricane Katrina to witness the consequences of a lack of planning.

What can you do?   Start talking about the “what ifs” and make a plan.  

1. Start with yourself. What will happen to you and your family if you become disabled or die unexpectedly?  Do you have disability insurance? Do you have a will?  Do you have a living will, and have you identified the person who will make the medical choices you would make if you are not in the position to do so?  

2. Approach healthy family members.  Say, “I hope that you live many happy years in which you enjoy all of the pleasures you worked so hard to create.”  Have you thought about what would happen to you in the event that you cannot live independently anymore?  If some medical event befalls you, who would make your medical choices?

3. Look into community resources that support caregiving.  A day program, for example, helps your loved one by providing social connections with peers.  Your community may even offer transportation to and from the program.  Getting out of the house offers the additional benefit of getting bodies moving.  Socializing and exercise are the two most powerful interventions that help your loved ones stay at their best.  

4. Make specific suggestions to friends, family members and neighbors who want to help. You may even want to keep a “help list.” When they say, “Let me know what I can do,” you have a response:  “Could you take Mom to her physical therapy appointment this week?”  “When you’re at the store, could you pick up some oranges and blueberries?”  “Could you watch the kids for an hour so I can get to the gym?” Your giving friends will appreciate specific ideas about how they can help.

5. Take care of your health.  Get good nutrition, plenty of sleep, and regular exercise to stay in top health.  Wash your hands regularly to prevent colds and flu.  Manage your stress with laughter, a prayer or even a deep breath.  Nourish your soul with a taste of activities that recharge your batteries such as writing in your journal or gardening.  Finally, talk to your doctor if you feel depressed or anxious.   

The best strategies for effective caregiving include preparation, acts of self-care and reaching out for help. That begins with the courage to start talking openly about caregiving.

Managing Caregiver Guilt: 5 Tips To Manage Guilt So Guilt Serves You, Not Imprisons You

By Roz Jones

Guilt is a common feeling in the landscape of care giving. Guilt can propel you to be the best you can be …or it can immobilize you.

 For caregivers, painful feelings — such as guilt, sadness and anger — are like any other pain. It’s your body’s way of saying, ‘Pay attention.’ Just as the pain of a burned finger pulls your hand from the stove, so, too, guilt guides your actions and optimizes your health.

You have a picture of the “Ideal You” with values you hold and how you relate to yourself and others. Guilt often arises when there’s a mismatch between your day-to-day choices and the choices the “Ideal You” would have made. The “Ideal You” may be a parent who attends all of the kids’ soccer games. Miss a game to take your dad to the doctor, and you think you’re falling short.  

You may have needs out of line with this “Ideal You.” You may believe that your own needs are insignificant, compared to the needs of your sick loved one. You then feel guilty when you even recognize your needs, much less act upon them. A mother may ask herself, “How can I go out for a walk with my kids when my mother is at home in pain?” (A hint for this mother: she can give more to her mother with an open heart when she takes good care of herself.)

You may have feelings misaligned with the “Ideal You.” Feeling angry about the injustice of your loved one’s illness? You might even feel angry at your loved one for getting sick! Recognizing those feelings can produce a healthy dose of guilt. Yes, you may even feel guilty about feeling guilty.

 “Why did my loved one get sick?” you may ask. Perhaps, if the “Ideal You” acted more often, your loved one would be healthy. What if you served more healthful meals? What if you called 911, instead of believing your husband when he said his chest pain was just “a little heartburn”? 

 If you’re the kind of person prone to guilt, learn to manage guilt so that guilt serves you rather than imprisons you. Here are 5 tips for managing your caregiver guilt:

 Recognize the feeling of guilt: Unrecognized guilt eats at your soul. Name it; look at the monster under the bed

 Identify other feelings: Often, there are feelings under the feeling of guilt. Name those, too. For example, say to yourself: “I hate to admit this to myself, but I’m resentful that dad’s illness changed all of our lives.” Once you put it into words, you will have a new perspective. You will also be reminding yourself of how fortunate you are to have what it takes to take care of loved one.” 

 Be compassionate with yourself: Cloudy moods, like cloudy days, come and go. There’s no one way a caregiver should feel. When you give yourself permission to have any feeling, and recognized that your feelings don’t control your actions, your guilt will subside.

 Look for the cause of the guilt: What is the mismatch between this “Ideal You” and the real you? Do you have an unmet need? Do you need to change your actions so that they align with your values?

Take action: Meet your needs. Needs are not bad or good; they just are. If you need some time alone, find someone to be with your loved one.

Change your behavior to fit your values: For example, Clara felt guilty because her friend was in the hospital and she didn’t send a card. Her guilt propelled her to buy some beautiful blank cards to make it easier for her to drop a note the next time.

 Ask for help: Call a friend and say, “I’m going through a hard time. Do you have a few minutes just to listen?” Have a family meeting and say, “Our lives have been a lot different since grandma got sick. I’m spending more time with her. Let’s figure out together how we’ll get everything done.”

Revisit and reinvent the “Ideal You”: You made the best choices based on your resources and knowledge at the time. As you look to the future, you can create a refined vision of the “Ideal You.” What legacy do you want to leave? What values do you hold dear? Then, when you wake up in the morning and put on your clothes, imagine dressing the “Ideal You.” Let this reinvented “Ideal You” make those moment-to-moment choices that create your legacy.

Understand that you will be a more effective caregiver when you care for the caregiver first. Loved ones neither want nor expect selfless servants. As a caregiver, when you care for yourself, you increase and improve your own caring. Yes, guilt is part of caregiving, but this guilt can help you become the caregiver you and your loved one want you to be.

Aging Parents and Role Reversal

By Roz Jones

This is the day you thought would never happen.  Your roles in life are reversing.  You’re trying to make decisions for yourself and your Aging Parent.  What will be best for them without altering your life too drastically.  How do you keep up the pace and ultimately please everyone around you?  You are not alone in life, you have a family, significant other, a career to think about.  You want to balance everything to keep everyone happy and life as normal as possible.  Think again!  Those once a week visits or daily phone calls aren’t enough anymore.  Your parent needs care, the real kind.  

The care includes making sure they eat, that they take their meds, that their money isn’t being floundered away on TV shopping.  You have siblings that think Assisted Living or Nursing Facilities are awful and they don’t want to put Mom or Dad in one even though they also don’t want to help out.  How do you cope?  How do you deal with this situation without alienating every member of your family?

First understand, it’s not about you.  What I mean by that statement is that it is not about guilt and what some think is the “Right thing to do”.  It’s not about hanging on to someone that they used to be.  They are an elderly person in need of constant care and attention.  If you need a dose of growing up, this situation will make it happen whether you’re ready or not!

Start with their doctor.  Have an appointment to discuss the faltering health of your beloved parent.   You can also check into the hospital that their health care is associated.  Every hospital has an elder care group of some type.  The medical coverage will also have affiliations with elder sourcing.  Between the doctor and the medical coverage group, you may be able to determine the types of help and living style your parents current status requires.  Keep asking until you have the best situation for all concerned.  

It may be as simple as an Aide visiting once or twice a day to help with showering, dressing, meals and meds.  Their health may need more than that and the visiting nurse or doctor’s office is the place to apply the concern.  The best word to learn to help an elder parent is the same as if your infant child were being cared for and that is SAFETY. If safety is not at the level necessary, keep pushing until you get the help you need.  Keep on insisting the area of SAFETY.

It may take you time to uncover everything available to your parent to help with this care process but trust me, it will be worth it in the many years’ elder care can stretch out to be.  It is best to discuss with them all their health and medical, financial and personal situations before that day arrives. 

When they are older the best thing you can give them is you.  Spend quality time instead of stress time.  Have them over for a day and dinner instead of needing to pawn them off on someone else.  The resentment builds if you do this alone and there are many really good care facilities to take that burden off your shoulders.

Safety and honesty is what makes those later years a good memory!

How to Spot Elder Abuse

By Roz Jones

Elder abuse is described by the following acts among family and members of the household, any nursing home staff or any individual. 

– When somebody attempts or causes physical injury to an elder

– When the family member or staff of a nursing home try to or is trying to place an elder in terror or alarm of physical harm by torment, threat or harassment

– When one is convincing or persuading an elder by strength or intimidation to participate in a certain act from which the elder has the right to withhold

– When one meaningfully confines the movements of an elder without his consent

– Threatening the elder to a crime of violence

1. Detecting Abuse: 

– Burn markings from cigarette

– Black eye, lacerations, bruises or cuts that can not be explained

– Rope marks, a sign that the elder had been tied or slashed upon

– Hair loss, a sign that the elder’s hair was pulled

– Bodily sores and wounds

– Fingernails that are broken

– The elder’s skin is very poor condition

– Fractures of the bone

– Bite marks

– Eye glasses are broken

– Laboratory results are positive of drug overdose

– The elder displays a sudden change of behavior

– The care giver refuses to allow visitors to see the elder

2. Signs Of Neglect: 

– Sores are untreated

– Displays significant signs of malnutrition

– May show signs of insanity

– Lack of personal hygiene care

3. Signs Of Emotional Abuse: 

– May display a nervous behavior

– Constantly be disturbed or upset

– Displays a negative attitude

– Always in anxiety

– Demonstrate signs of insecurity, such as constant sucking or biting of the fingers

4. Financial Abuse: 

– Unknown withdrawal from the elder’s account

– Unusual ATM withdrawals and switching of accounts

– The elder tend to withdraw money often

– The elder does not receive his pension or Social Security check from the mail

– The elder, without any valid reason, revises his will and changes his beneficiary

– The elder unexplainably signs contracts that results to unwanted financial commitment

– Signature was forged

– The elder has plenty of unpaid bill, despite his assets that can very well cover the bill

– Strange credit card charges

5. Signs Of Sexual Abuse

– Mysterious and unexplained genital infection

– Anal or vaginal bleeding that can not be explained

– Ripped underwear

– The elder may tell someone that she has been sexually abused

– Genitals are bruised

– The elder may report that her care giver is showing her pornographic materials

– The report of the elder that she is forced to touch someone’s genitals, observe sexual acts, tell dirty stories and pose nude for a picture

6. How Can You Prevent Abuse To Yourself As An Elder?

– Keep and continue contacts with friends and neighbors

– Work out on a buddy system with other elders in the home

– Be active socially, do not be in isolation

– Protest and speak up if you are not happy or contented with the way your caregiver or other family member treats you. Tell somebody

– Request your friends and other relatives to visit you often

– Open your mail personally

– Never sign anything unless it was reviewed by someone that you trust

– Always review your will once in a while

– Coordinate so that your pension or Social Security check be deposited directly to your bank account than being sent by mail

7. How Can You Prevent Abuse To Others?

– Pay attention. Be wary and look out for signals that might point towards abuse

– Call your loved one as frequently as possible

– Visit your loved one often and make certain that she is well taken cared of

– Always be open to your loved one, taking the time to always talk to her and assure her that you are there to help and can be trusted

– Get permission to periodically look into your loved one’s bank accounts as well as credit card statements for unauthorized withdrawals or transactions

8. How To Get Help If You Or Someone You Know Is Suffering Abuse:

911 or your local police emergency number or your local hospital emergency room

National Center on Elder Abuse

Washington, DC 20005

(202) 898-2586

Fax: (202) 898-2583

Area Agency on Aging

Almost all States have information as well as a referral line that can be useful and helpful in locating and finding services for elder abuse and neglect victims.

National Domestic Violence Hotline

The hotline provides support counseling for victims of domestic violence and provides links to 2,500 local support services for abused women. The hotline operates 24 hours a day, every day of the year.

1-800-799-SAFE

TDD 1-800-787-3224

Using Hospice Services for Dying at Home

Preparing for end of life means coming to terms with the fact that death is part of living. How you die may not be something you decide but sometimes where you die is in your control. Hospice services can help. 

Hospice Care is a type of health care that serves to relieve pain without treating the cause for the pain. The focus of a hospice team is to provide medical, emotional, and spiritual support to families with a terminal patient – generally in their own home. 

Some of the benefits of hospice care are:

  • Ability to die at home
  • Pain management 
  • Help with ancillary medical needs 
  • Provide education
  • Offer emotional support 

Being able to be at home during the final days of life can be a helpful and comfortable thing for entire families. Being in familiar surroundings with loved ones, pets, and personal belongings can make transitioning easier than being isolated in a sterile and noisy environment like a hospital. Most everyone prefers the idea of being home rather than away when they die.

If you or a loved one has a terminal diagnosis, you are likely a candidate for palliative care and eventually hospice. Your medical provider can help you connect with a hospice team where you will create a plan and set goals for your experience. This may include things like:

  • Comfort needs
  • Direct care needs
  • Choices during transition
  • Direct support for emotional and spiritual needs 

Hospice isn’t just about direct care when you are actively dying. It begins with a terminal diagnosis. Palliative care – while not considered hospice care – is a form of treating pain and making plans before hospice takes over providing final care. You do not have to be bed ridden to get support. Your medical team will include palliative care as part of your treatment plan.  

As things progress your hospice nurse will provide assistance to you and your family to help make things less scary and as comfortable as possible. Knowing someone is there who can help and that you can be at home at such an important time makes such big difference in your peace of mind and comfort during this process. Even after you pass, your hospice support team will help your family contact your mortuary and help ready your remains for your pre-planned funeral process.