Caregiver Balance: Learning the Hard Way

By Angela Taylor

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My father was a retired engineer with a love of family, golf, and buddies from his Air Force squadron. I became his caregiver when he developed LBD, a disease unfamiliar to us at the start. Gaining knowledge of LBD was the first step of many that ultimately led to my current role with LBDA. However long before that, I learned (the hard way, of course) about maintaining balance as a caregiver. This is a story about a daughter’s love, dementia, caregiving, and finding balance in the midst of the storm.

LIFE BEFORE LBD

Dad took an early retirement after 30+ years with a Fortune 500 company. He golfed frequently and traveled several times a year on vacations, including visits to see my two brothers and me. The only daughter of an Italian father, as a child I was the “apple of his eye” and that closeness remained into adulthood.

Dad’s sharp mind started to change subtly in his early 60s. At that time, a neurologist diagnosed his condition as mild cognitive impairment. My father lived alone, in our childhood home, with no family nearby. He began calling me for advice or assistance. At that time, I was a full-time, stay at home mom with two young children. My husband and I were both fielding calls regularly from Dad, mostly related to computer issues, assistance with travel plans, and other things he used to handle with ease.

JOINING THE SANDWICH GENERATION

Twice over the next year or two, he stayed with us for a few months at a time to recover from back surgeries. The addition of my sometimes confused, but easy-going Dad to the household was harder than I thought. Suddenly, I was part of the “Sandwich Generation,” caring not just for my own children, but for an ailing parent. His checkbook started to baffle him, so I started “helping” with his finances. Looking back, it was only the tip of the iceberg, as he was soon to be diagnosed with LBD.

After the second surgery, Dad needed support on a daily basis. He couldn’t manage his own medications and had trouble with routine household chores. His cognition waning considerably, Dad was in denial about his condition. My husband and I faced reality that my father would never again be safe to drive or live alone in his home of 30 years. We gently broke the news and together, we discussed his options. Dad decided to move into a long-term care residence, as soon as his house could be sold.

Just like caring for my young children whom I kept safe from harm, this effort now extended to my father. Throughout the time he lived with us, I focused on anticipating Dad’s needs, trying to smooth his transition from independence to dependency. We both felt the grief and anger over LBD stealing away the life he had built over the years, and because I loved him, I tried to spare him as much pain and disappointment as I could. So, I carried the burden for both of us. However, when I’d try to relax at the end of the day, my brain was still working on over-drive.

I admit that I cried often, leaning heavily on my stalwart husband. Interestingly, despite one of my most sacred personal values being balance and moderation, somehow, that value seemed a luxury I couldn’t afford when I was Dad’s caregiver. I made little time for social get-togethers with my friends, stopped exercising, and did little to recharge my emotional batteries. Richard A. Swenson explains it well in his book, Margin: Restoring Emotional, Physical, Financial, and Time Reserves to Overloaded Lives. Paraphrasing him, just as the page in a book has a margin of space around the edges, I had used up my own margin. There was nothing left in me to handle life’s little surprises. We know LBD to be full of surprises.

FINDING BALANCE

Through counseling I learned to focus my attention more on the present moment than the unknown future. From there, I grew to understand that by trying to shield my father from the unavoidable emotional impact of LBD, I was mistrusting his ability to handle his own emotions. When I stopped over-protecting Dad, I grew to appreciate how strong and resilient he was. I stopped carrying a load that wasn’t mine.

I finally acknowledged we were no longer a short term or crisis situation. This pace I sustained for months at a time, I certainly wouldn’t be able to endure for the long term. So my husband and I established new routines we could maintain for years. I started to make decisions balancing what was essential for both my Dad’s care with my own family’s well-being. As hard as it was, I awkwardly practiced setting healthier boundaries, even when it meant disappointing my father.

Here’s a good example of a small change that made a big difference. When living with us, Dad often followed me like my shadow. Later, I realized that he felt more safe and secure when I was around than when he was alone. Looking back, that feels really good but at the time, it was pretty annoying. My husband and I needed some private time to talk about Dad, our children, and our marriage. Unfortunately, my father wasn’t picking up on any subtle social cues any longer. So, we adapted our routine, going to bed an hour earlier some days just to talk, which meant that Dad also went to bed earlier. We also woke up an hour earlier than Dad every day and used that time to have coffee together. These little changes gave us more time as a couple.

When he moved into an assisted living facility, we set up a visitation routine that we kept for the next 5 years. In addition to taking him to all of his medical appointments, I took Dad out once a week for lunch and brought him over every Sunday for a family dinner. There were other times we got together for outings and activities too. No matter what, Dad knew he’d see me in just a few days. He counted on those visits, and they provided me with the space to take care of myself and the rest of my family too.

As caregivers, we all must be honest with ourselves and others in order to remain healthy and well-balanced. That may require requesting or accepting caregiving help from family members or outside professionals. It may mean finding time for a hobby that has no practical purpose in your life other than it makes you happy. Take it from me.

Angela Taylor is the Director of Programs for the Lewy Body Dementia Association. In 2004, Angela joined LBDA as a member of LBDA’s Board of Directors when she was a caregiver for her father who had Lewy Body dementia. Angela now oversees all of LBDA’s programs and services, advocates to federal agencies on behalf of LBD families, and serves as the liaison to the Scientific Advisory Council.

Used with permission, Lewy Body Dementia Association, www.lbda.org, © 2014.  LBDA lockupCS2

There is clear evidence of caregiver burden and grief associated with LBD disease manifestations. It is very important to comprehensively address the needs of patients with LBD and their caregivers, and the Lewy Body Dementia Association is here to help.  To learn more, please visit www.lbda.org.  To view Angela’s story on the LBDA Web site, please click here.

 

15th Annual James A. Kaufmann Golf Tournament

This year marks the 15th year that the James A. Kaufmann Golf Tournament has been raising awareness and money for the Alzheimer’s Association, Georgia Chapter.  The event was started in 1999 by Dr. Bobby and Pam Kaufmann honoring his father, beloved Atlanta physician, Dr. James A. Kaufmann who passed away in April of 2002 from complications from Alzheimer’s Disease. The James A. Kaufmann Memorial Event has raised over $2,500,000 since it began. 

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Carts are lined up and ready to go at Cherokee Town & Country Club

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Golfers are ready to go too, some dressed “to the nines” in their golfer’s attire!

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Volunteers and staff register golfers.

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Golfers enjoy lunch before heading out on the course.

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Ryan Cameron, from V103 introduces the event and gives special thanks to Bobby Kaufmann for hosting each year.

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Alzheimer’s Association, Georgia Chapter CEO Leslie Gregory acknowledges Bobby Kaufmann’s work with a framed photo of his father and plaque of recognition.

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kaufmann_golf_2014-127 Golfers hit the greens!

Limiting Unwanted Calls And Emails

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Some phone calls and emails are important, some can be annoying, and others are just plain illegal. When you are caring for a loved one with dementia – some of these calls can also be dangerous. It is not uncommon for older adults to be frequently solicited by a variety of organizations – some legitimate and some not. While many of us may be able to tell the difference between a real organization and a false one (though it seems to get more difficult every day!)- a person with dementia may or may not be able to tell. A person with dementia may also offer up extensive personal information that can be used to steal their identity or their assets. These offenses are terrible and while it is very difficult to deal with the aftermath of such an assault, there are some things you can do to protect your loved ones.

The Federal Trade Commission’s Website offers up a wealth of information and resources to help you reduce the number of unwanted messages you get by phone and online.  Learn more here:  http://www.consumer.ftc.gov/topics/limiting-unwanted-calls-emails

WALK Season is here!

WALK to END Alzheimer's

Dear Readers,

Each year, you probably hear about it: The WALK to END Alzheimer’s. Several years ago this event was called The Memory Walk. But, we felt like that might not be getting the message across quite right. We aren’t just walking because Alzheimer’s exists, we are walking because Alzheimer’s should NOT exist. We are walking to END Alzheimer’s – through our presence we are increasing awareness and through our donations we are increasing research efforts to bring an END Alzheimer’s.

It’s that time of year again – each summer we start gearing up for the walks that will take place across the state of Georgia in the fall. These events are wonderful – there is music, there is energy; there are ways to sign up to engage in clinical trials; you can get more information about the programs and services in your community; and you can register to become an Advocate and meet with legislators about supporting our efforts to END this disease.

If you don’t have much money, share your time – participate in the WALK or volunteer with us. If you don’t have much time, make a donation. If you don’t have much of either – share your VOICE – share our message with your friends so that they can register, donate and get involved. All of us can find a way to help END this disease! And together, we will.

Take the first step to a world without Alzheimer’s by finding a Walk near you. Once you register, you will have access to a wide range of tools and support through your Participant Center, ensuring a successful and fulfilling experience.
Our mission
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Our vision
A world without Alzheimer’s disease.

Flower Power at the Walk to END Alzheimer's

Elder Mediation: An Alternative to Guardianship

 

By Michelle W. Koufman, JD, Elder Law Attorney; Certified Elder Mediator

Seniors and their families face many different long term care decisions and transitions. These decisions/transitions often cause disagreement, discord and tension among different family members – in many cases – even leading to messy guardianship cases which are very difficult for everyone involved. However, the process of elder mediation can be a viable option – which tends to be less expensive and less emotionally traumatic for all of the parties involved. This blog post will define elder mediation; explore the process and when it might be appropriate for a senior and their family.

What is elder mediation?

Elder mediation is a relatively new practice area, which is gaining increased attention as a new and promising approach for resolving disputes between older adults and family members or other third parties. In this process of elder mediation – a trained facilitator uses a “mediation process model” in order to try to resolve disputes around elder issue. It is a voluntary process – where a neutral facilitator works with the disputing parties to try to help them to come to their own decisions about how to best resolve the issues at hand. Again, the mediator is “neutral” – so, they do not take any sides, make judgments or give advice. Meetings are confidential and are held in a safe setting, with extra attention made to accommodate the older person’s voice. Although there is no requirement or guarantee that an agreement will be reached, the goal of the parties involved should be to reach a mutually satisfactory resolution.

What is the process of elder mediation?

Elder mediation provides a forum for family decision making. Under this model – the trained mediator facilitates a purposeful and directed conversation – in which all family members involved are encouraged to express their feelings, interests, concerns, etc. The meetings also are informal and can be held at different locations that best meet all of the family members needs – including assisted living facilities, private homes, apartments, nursing homes, or hospitals.

What types of issues can be addressed by elder mediation?

Some typical areas that can be addressed by elder mediation are: healthcare/medical care decisions, caregiving, living arrangements, housing issues, caregiving, financial issues, driving issues, legal issues, and end-of- life planning and decision making. Elder mediators should inform all participants that mediators are not neutral in issues of abuse, neglect or safety and have a duty to report abuse.

 What type of qualifications does an elder mediator have?

While there are no hard and fast qualifications that all elder mediators must have across the board, it is advisable to find an elder mediator who has at least completed specialized elder mediation training. Although most mediators have taken at least 40 hours of basic mediation training, having a specially trained elder mediator who is not only familiar with the aging process and the family dynamics involved with these complex cases, but is also familiar with the local aging resources and programs, is invaluable.

 

Michelle W. Koufman, an experienced tax and estate planning attorney, practices in the following areas: long term care planning, estate planning, Medicaid planning, VA Aid & Attendance benefits, guardianship, probate administration and elder/family mediation. She is a member of the National Academy of Elder Law Attorneys (NAELA) and the GA Chapter of NAELA, as well as the National Aging in Place Council, Greater Atlanta Chapter. For additional information, please visit her website at http://www.GeorgiaElderCareLaw.com.

 

“I Can’t Do This!”

Caregiver Stress

Caregiver Stress

By Theresa Bayman, Program Director Coastal Region

Recently, a member of one of my support groups (with whom I have become very close),  reached her caregiver “breaking point.” Most, if not all caregivers, find themselves at this point at least once throughout their experience. This particular caregiver is a retired nurse – which you might think would give her a leg-up when it comes to care-giving for a loved one at home – but you’d be wrong about that.

When it comes to caring for someone we love, especially a parent or a spouse, the playing field is leveled.  Dementia care-giving is unlike most other care-giving experiences because of the ever-changing needs and limitations of the person receiving care.  With many illnesses, a caregiver can ask the patient “Are you in pain?; Are you hungry?; Would you like some company?”  With a dementia diagnosis, caregivers do not always have the benefit of verbal answers and cues. Instead, they learn to read body language and anticipate needs based on other clues and symptoms. Caregivers are part nurse, part detective, part cook, scheduler, transporter, husband/wife/daughter/son, etc. In short – mostly superhero!

Meeting the ever-changing needs of a loved one with dementia requires continuous evolution of the caregiver(s) themselves. Often times family dynamics/roles must shift in addition to changing perspectives, reactions, the way we make decisions and spend our time – just to name a few. It’s a huge adjustment – even for people like my dear friend who has been a professional caregiver for many years. She came to me asking for help, saying “I can’t do this” but the truth of the matter is just that you can’t do it aloneRecognizing the need for help and support is the first step to becoming a truly successful caregiver. Help can come in many forms – church members, nurses, home health agencies, adult day care, hospice, facility settings, good friends who know how to listen, family that is willing to step up to the plate and take on new roles, friends who can bring meals or keep you in their prayers, support group meetings, Alzheimer’s Association counselors and staff and many, many other ways. These options are out there waiting for you because care-giving just isn’t a one-person job. You can do it – and you don’t have to do it alone! Counselors are standing by on our helpline 24/7 – 800-272-3900

Can a Person with Dementia Live or Stay Alone?

 

There are many things to consider when thinking about whether or not a loved one needs to move or have in-home care, etc. Most of us want our loved ones to experience the most independence possible for as long as possible – but safely. It can be difficult at times to balance independence and safety and a careful evaluation is appropriate (and perhaps frequent re-evaluations as time progresses) to help make these types of difficult decisions.

The below questions can assist with identifying some safety concerns. Some of these items may only apply to individuals who are currently living by themselves rather than those who may be left alone for a short period of time while a caregiver is out. These questions are only a guide but if there are one or more problems noted in each category, then that could be an indicator that more supervision or a change in living arrangements is needed. For more information on home safety or our Medic-Alert/Safe Return program or for any other questions, call 800-272-3900 to speak with a counselor. More information on home safety is also available online at: http://alz.org/care/alzheimers-dementia-home-safety.asp

 

Safety Concerns

Does Your loved one: 

  • Have driving accidents, even minor ones?
  • Get lost driving or walking?
  • Burn pots on the stove or forget to turn off the burners or oven?
  • Forget to extinguish cigarettes?
  • Let strangers into the house or lock him/herself out of the house?
  • Forget to secure the house at night/when going out?
  • Demonstrate mood swings and suspicious/paranoid behaviors?
  • Know there are firearms or dangerous tools in the house and how to use them safely?
  • Know how to operate the thermostat and judge temperature correctly?
  • Have a recent history of being a victim of scams or crimes or any nature?

Personal Care

Is your loved one able to: 

  • Eat well-balanced meals and drink plenty of fluids?
  • Dress appropriately for the weather?
  • Safely bathe and use the toilet independently?

Other Tasks

Is your loved on able to: 

  • Keep up with the housekeeping duties and home repairs?
  • Pay bills on time, balance checkbook and use credit cards appropriately?
  • Shop for, store and cook food safely and correctly?
  • Use the phone and remember important phone numbers or where to find them?
  • Take medication on time and in the correct doses?
  • Recite their current address and phone number?