By Avow

It was a beautiful day in May when Jessica received the call informing her that her father had succumbed to a fatal heart attack. “Dad” was 77 and apparently suffering from undetected heart disease. The loss came as a surprise to Jessica along with the discovery that her father had never put his affairs in order – a shocking realization considering “Mom” was suffering from advanced dementia.

With Dad gone, caring for Mom would fall to Jessica, the oldest of the couple’s eight children – a nurse by training and one of two siblings living locally. Jessica promptly moved Mom into her home and was ready to become a supportive caregiver – confident that she could handle it since she worked from home and her two grown children were off at college.

Following her father’s death, however, Jessica found herself wading through what seemed to be an insurmountable mound of red tape required to close her parents’ estate. Dad had no will or funeral plan and had not prepared a living will or power of attorney plan for her mother. Jessica did not even know which bank her parents used. At the same time, Jessica was facing the heartbreaking truth that her mom was steeped in dementia and required 24-hour care and supervision – clearly Dad had provided much more support than he ever let on.

In the years leading up to her father’s death, Jessica brought up the topic of getting affairs in order, but most often, her father would dismiss the topic and say, “I’ll get to it.” He never did of course and now Jessica would need to turn to an attorney for help. The process would be long and exhausting and she would spend thousands of dollars in legal fees. Jessica wished she could have spent these funds on enhanced care for her mother who experienced a rapid deterioration from Alzheimer’s disease and eventually required placement in a nursing facility.

Unfortunately, Jessica’s story is not unique and her father’s avoidance of getting his affairs in order is common. For many of us, the idea of illness or death touching our lives is easily avoided or dismissed for attention later¬. Plus, getting your affairs in order is work and often carries some expense. It also requires some serious decision-making and hard conversations.

If “getting your affairs in order” is still on your to-do list, learn from Jessica’s story and move it up in priority. If you have aging parents, find out what plans they’ve made, if any. Don’t let perceived youth delay your actions – accidents and serious illnesses have no age qualifiers.

Need some help getting started? Avow has some free tools available on its website including:

• “My Life Dossier,” a tool designed to help you organize important documents needed in times of emergency or following a death. This resource also walks you through some important considerations to help you prepare for your final life chapter.
• “Living Will Kit” to help you document your advance directives.

Both resources are provided in PDF format and may be downloaded at avowcares.org. To go directly to the resource links visit: http://avowcares.org/docs/living-will-resources

Avow delivers the promise of life by providing comfort, care, understanding and dignity to those who are seriously ill, caring for a frail or sick loved one or mourning someone’s passing. They are knitted into their community, providing supportive services to anyone who needs them, including those whose loved ones were not in our programs. Find out more at avowcares.org

Joan Byrd grew up in a family of six. She and her siblings were raised to stay connected with one another no matter where they went. Each year, Joan would make the trek from Phoenix to Washington, DC to visit her older sister. After a case of shingles put her sister in the hospital, Joan learned her sister was also suffering from dementia. Her sister, who lived alone, never told anyone about the condition.

Her sister’s husband had passed away and she never had children, so the responsibility fell on Joan to provide the critical care her sister needed. Over the next few years, she got her sister’s affairs in order — everything from paying outstanding bills to making sure she had food to eat. And, Joan did this from her home in Phoenix and through visits to DC.

Joan is one of the many caregivers who provide support from across the country. According to the Alzheimer’s Association, more than 15 million caregivers provided more than 17 billion hours of unpaid care valued at $216 billion in 2012.

Whether you find yourself caring for someone who lives across the country or assisting someone who lives closer, providing ongoing care for family members or loved ones with dementia is a challenging, and often exhausting long-term job. And, due to dementia’s progressive nature, caregiving can last 10 years or longer.

In the past, generations of families were able to divide caregiving tasks and responsibilities because they were larger and often lived in the same town. Today’s families are often smaller and may be spread across the country, communicating by telephone, email, Facebook or Skype.
 
Family members providing direct care are often isolated, and family members who don’t see the day-to-day may not understand the effects or severity of the dementing illness. This can lead to conflict, frustration, and long term dysfunction despite the best intentions of all family members.

It is important to remember that your job as a distance caregiver is to ease the burden on the direct caregiver and make the person with dementia feel at ease. It’s crucial for long-distance caregivers to understand the disease while offering meaningful help.

Here are some ways for distance caregivers to stay involved with the direct caregiver:

 
• Set a schedule and call the caregiver directly. Be a good listener. Use phrases like “Help me to understand,” “This must be difficult for you,” “You must be tired (frustrated, etc.),” and “What do you want to do about that?”
• Ask for copies of the medical reports so you can better understand the person’s condition.
• Read the latest information on Alzheimer’s disease or related dementia and methods of care to keep yourself in the know.
• Consider attending a caregiver support group to discover solutions for some of the problems associated with caregiving.
• Inquire about the caregiver’s health and whether they are able to get out at times.
• Offer to contact the local Area Agency on Aging to help find respite services and day programs.
• Offer to trade places for a weekend every few months so the caregiver gets a “free vacation” and you provide the necessary care.
• Always remember the important milestones in a caregiver’s life, like birthdays and anniversaries, as special days tend to be the most difficult for caregivers.

And here are some tips to stay connected with a person with dementia:

 
• Send cards or letters frequently.
• Speak directly to the person with dementia on the phone or via Skype. Have favorite stories of the person’s life you can share during the call.
• Always remember birthdays, anniversaries or other special occasions.
• Send photos with labels on the back that identifies everyone in the picture. In addition to pictures of family members, send images of your home, your new dog, or a vacation that speak about your life.
• When visiting, don’t forget to build in leisure time to spend with the person. Try to stick with the person’s regular routine to avoid agitation or confusion.
• Depending on the person’s condition, dinner at home may be less stressful than going out. Listen closely about limitations and try to keep activities to no more than 90 minutes.
• If the person doesn’t communicate well, listen anyway and keep talking. Don’t expect the person to remember the activity. You are doing this for moments of enjoyment, not to create new memories.

Remember, it’s the little things that count as you assist in the care of a loved one with Alzheimer’s or a related dementia from afar. Because caregiving is sometimes overwhelming, it’s important to appreciate the support of everyone in the situation which helps overcome the unique challenges in care for your loved one.