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Helping from a Distance

Challenges of a Long-Distance Caregiving

"It is one of the most beautiful compensations of life, that no

man can sincerely try to help another without helping himself."

Ralph Waldo Emerson

I was kneeling beside Mom's bed last night when she was saying her bedtime prayer. This night

she prayed, "Now I lay me down to sleep, I pray the LORD my soul to keep. If I should die before

I wake, I pray he takes me like an earthquake." Instead of ...my soul to take. I said "what?" Mom

laughed and said, "well, I couldn't remember the rest and ...well, it rhymed" ! ~ Amen!

- lighthouseido

Let’s start with a few stories!!

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My 84-year-old mother frequently thinks of me as her three-year-old toddler.

I was reminded not long ago that my 47-year-old face isn't quite what she

remembers. I was kneeling next to her bed. "Frances, my little pumpkin-

chan," she began, then stopped and looked at me in horror. "WHAT

HAPPENED TO YOU?"

- pumpkinchan

HOW MANY ATTENDEES HERE

TODAY HAVE BEEN

CAREGIVERS, ARE NOW OR WORK WITH CAREGIVERS??

What are some words that describe caregiving???

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WHAT IS LONG DISTANCE

CAREGIVING????

CAREGIVERS THAT LIVE

ONE HOUR OR MORE

AWAY FROM THE CARE

RECIPIENT.

Now……

Can any of the words we used to describe caregiving, be used to describe long distance caregiving????

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It will be more of a challenge to be a long distance caregiver but it can still be done.

First things first!!

How do you know when someone needs caregiving

help, even from a distance??

Phone calls or visits!!!

You have to be part detective, as your loved one may not always tell you what is going on! (It may be that strive for Independence!)

Has their activity level changed? Not going to normal functions such as church, dinner with friends etc?

Changes in their tone or words used?

Things happening that are out of the ordinary for that person? Utilities shut off or policies cancelled? Bills not paid?

Some hints or clues may be so subtle that they are easy to

miss!

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Things to watch for during visits.

Is there spoiled food in the refrigerator?

New smells in the home? Incontinence problems?

Mail stacking up?

Clutter in the home (if that is a change)?

Changes in personal hygiene-not bathing or changing clothes?

Have their friends noticed changes or voiced concerns?

Are there more doctor or ER visits?

Possible Medication mismanagement? How to monitor for this?

"Humankind has not woven the web of life.

We are but one thread within it.

Whatever we do to the web, we do to ourselves.

All things are bound together. All things connect."

--Chief Seattle

OKAY…..Now you know your loved one needs help, you live hours away,

so now what do you do?

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What happens in the ideal world?

You hold a family meeting, define everyone’s

roles, involve care recipient in all decisions and

divide up the tasks amongst family members.

How to proceed in the “real world”.

IF others are involved in the caregiving tasks, set up a family meeting to define and divide

tasks.

Who coordinates care?

Who transports and goes to the doctor with the person?

Who handles finances?

“MANY HANDS MAKE LIGHT WORK!!!”

REMEMBER THAT THERE IS A DIFFERENCE BETWEEN PROVIDING CARE AND TAKING OVER!!!

Allow self-determination with as many decisions as possible.

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Why won’t some family members

help??

• SOME MEMBERS MAY DISAGREE ON THE MISSION

• DWELLING ON PAST ISSUES, ANGERS, HURTS, FRUSTRATIONS

How can you proceed when all parties cannot agree???

Discuss possibility of focusing on the care recipient’s needs instead of past issues.

Try to divide up tasks based on each others strengths or availability. For example the

long distance caregiver can help with finances, calling loved one daily or researching

resource information.

Try to be aware of your own feelings as well as other caregiving partners.

Hire a trained family mediator if possible as an independent 3rd party

if funds allow.

Always involve care recipient at all levels,

when at all possible, so as not to take away

their independence or decision making.

If the care recipient refuses assistance, try

explaining to them that, by graciously

accepting your help, they are allowing you the

opportunity to feel better by helping them.

(AARP)

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“IN EVERY CONCEIVABLE MANNER, THE FAMILY IS LINK TO OUR PAST, BRIDGE TO

OUR FUTURE.”

ALEX HALEY

IF NO LOCAL CAREGIVERS INVOLVED, LOOK FOR “BOOTS ON THE GROUND”

Area Agency on Aging’s are a resource for Options Counseling

Google is your “friend”!

Talk to neighbors, friends, develop an informal network of people to call upon when there is an emergency.

Try to Skype or Face time regularly.

If that is not a possibility, call daily or at least frequently.

Find someone you can call upon for emergencies such as your loved one going to ER. A person that can provide you with a status report.

It would be very helpful if

everyone could takes care

of legal & financial

groundwork before the onset

of caregiving!!

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Which legal issues????

Advanced Directives including:

Living Will

Power of Attorney

Health Care Representative

HIPAA forms completed at all doctor offices listing caregiver as receiver of information!

ENCOURAGE ALL YOUR LOVED ONES TO GET DOCUMENTS COMPLETED

BEFORE AN ISSUE ARISES!!!!!!

DECIDE WHO IS GOING TO HANDLE FINANCES (IF NEEDED)

This is easily done with online banking now. You can pay bills from a distance.

Need to know income, expenses, insurance information and all banking or investment

accounts.

Online bill paying can be time consuming to set up but of great benefit after account is

established.

Gather the following documents and information

1. Copy of Medicare cards, Social Security cards

2. Household income amount and sources.

3. All insurance information. Health, life car, long term care insurance.

4. Birth, marriage, military and divorce certificates or decrees.

5. Physician’s names and phone numbers.

6. List of all medications taken and pharmacy phone #.

7. Name and location of banks and account numbers and safety deposit keys

8. Location of vehicle titles

9. Financial advisors names or investment information.

10. All financial obligations such as mortgage, rent, car payment, etc.

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Question…….How long would it take you to gather your own information listed on the

previous slides??How long it would

take someone that

didn’t know what

they were looking

for, to find your

needed info?? Who would know where

to start looking in the

event you couldn’t

communicate with

them?

Do you change address for all mail??This problems seems simple but it’s not.

Consider just changing the address for bills, bank accounts,

insurance, investments. We are all use to getting mail. The sudden

loss of mail can make someone feel more isolated.

Less of a loss for the care recipient if they are striving to remain

independent. (Self determination again!)

If you don’t have all mail forwarded then you may have to present

legal paperwork to providers or enlist verbal consent from care

recipient that it is ok.

“A good laugh and a long sleep are the two best cures for anything.” — Irish proverb

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Enlist someone that can go to all doctors appointments with your loved one.

ThenCommunicate, Communicate,

Communicate

What is the hardest

thing to give up as we

age?

DRIVING!!!!!!!!

How do you know, from a distance, if it is still

safe for your loved one to drive?

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If the care recipient is still driving, when you are visiting, try to assess their driving ability. Have them drive and then evaluate their ability to continue driving!

Ways that technology can help the long distance caregiver?

Medication dispensers

A way to assist the care recipient in

knowing when to

take medicines.

Cannot over

medicate and caregivers are

alerted if

medicines are not

taken as

prescribed.

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Mobile caregiving apps

Assists caregivers in sharing info on the care recipient such as

medicine changes, doctor appts, health updates, etc. A way

to increase communication and hopefully increase

participation among other members.

CARINGBRIDGE

LOTSA HELPING HANDS

CARE ZONE

CARING VILLAGE

CAREGIVERS TOUCH

BALANCE (ALZ PTS)

ELDER 411 (HELPFUL ADVICE)

When a phone call only is not enough

FACE TIME or SKYPE

GPS PERSONAL EMERGENCY BUTTONS

• FALL BUTTONS

• DOOR ALARMS WITH LASER SENSORS TO ALERT IF THE DOOR IS OPENED

• CAMERAS WITH SECURE ONLINE ACCESS FOR REMOTE MONITORING

• CARBON MONOXIDE DETECTION

• FIRE & SMOKE MONITORING

• FLOOD PROTECTION & TEMPERATURE MONITORING

• PRESSURE SENSITIVE FLOOR MATS

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Have a home safety evaluation completed that will make

recommendations as to areas of the home that could pose a

hazard for the care recipient. Changes could include: bathroom

modifications or specialized equipment, widen doorways,

removing throw rugs to reduce fall risk, adding a ramp for easier

access in and out of the home.

Identify a local expert such as a Case Manager with an Area

Agency on Aging like SWIRCA that can assist with issues as they

arise and identify options that are available to help you. (N4A.org)

Educate yourself about subsidized or private pay services

available through the Area Agency on Aging.

What is the one emotion that

most long distance

caregivers share??

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“Guilt has a purpose in life. .……But guilt is a complicated emotion. We

take on the expectations of our culture, our religion, our family. And then

we take on the expectations of our toughest critic – ourselves. That

committee that meets in our head tells us we are not doing this

caregiving thing well enough.”

From Agingcare.com

Does my guilt over any of these things help anyone now? That is what I have to ask myself when I find my mind mulling over these old issues. Nothing, absolutely

nothing, can change things. I didn't do anything terrible. I just didn't do my "caregiving" as perfectly as I'd like to have done. Wallowing in guilt helps no one.

My solution? Move forward. Tell people my stories. Tell them my successes and my failures. When I do that, it gives me hope. – just spend more time touching than they would have

spent had I not told my story. And maybe there's someone reading this who has neglected writing a note to an elder because he or she is "too busy." Maybe that person will sit down and write. If that happens, then I've made my amends. It's all I can do, as I can't live my life over,

nor do I want to.Then I need to forgive myself for all of my imperfections. I am human. I do my best with what I have at the moment, and that has to be good enough. Guilt erodes the soul. Be done with it.

Carol Bradley Bursack

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Who is watching over the caregiver??

• The caregiver needs to take care

of his/her self during this stressful

time.

• Look for support groups, friends to

spend time with.

• How do you relieve stress?

• Yoga, TaiChi, Wellness Programs,

reading, walking, shopping.

• Find out what works that allows

you to de-stress.

• Take a vacation. Send your loved

one to stay with other family

members while you are gone.

Some final thoughts!!! Caregiving is not easy for anyone, not the caregiver or the care recipient.

Allow self determination as much as possible

Enlist support from others and define roles

There still may be gaps that require caregivers to be creative. Do your

research. You are not alone. If there are limited resources to travel and visit

the care recipient or hire “boots on the ground”, you could enlist help of

neighbors or friends to check on the loved one.

If other caregivers involved, communicate, communicate, communicate!

RESOURCES TO REMEMBER

Swirca.org

In.gov/fssa

N4A.org

Eldercare.gov

Alzheimers.org

AARP.org (driver’s programs, Family Caregiving videos)

Easter Seals (driver’s test)

NCOA.org

Hilarity for Charity respite grants (Seth Rogen)

Medicare.gov

Benefitscheckup.org

SSA.gov

Caregiver.org

Aplaceformom.com (senior housing options)

Elder Attorneys

Medicare Savings Programs