Caring for

Caregivers

Perspectives on Life From

the Other Side of the

BedAgrAbility National Training

Workshop, April 2, 2014Kathy Smith ~ JoBeth Rath

~ Tess McKeel

“There are only four kinds of people in this world—

those who have been caregivers, those who

currently are caregivers, those who will be caregivers

and those who need caregivers.”

~ Former First Lady Rosalynn Carter

How did I get here?Although we all know we will be challenged with the role of care-giving in some form, ending up there happens in different ways.

Sometimes we are thrust into the role, other times, it creeps up subtly and we don’t even realize our role has been transformed.

The realities are the same – you are bearing most of the weight of caring for a loved one.

The New Job Responsibilities (for which you receive NO training)

Advocate Nurse Guardian Cook Companion Maid Personal Assistant

Safety Officer Chauffer Maintenance &

Repair Person Social Worker Activities Director Pharamasist

Video

What did you hear? Helpless Lonely Sad Frustrated Tired

Sad Depressed Overwhelmed Guilty

So many emotions, so little time.

Embarrassment Stumble Fall Run into something with the wheelchair Flat Tires Smell Sounds and Noises Bowel and Bladder Control Problems Urinals falling out of vehicles Emptying urinals

So many emotions, so little time.

Anger So many demands Criticism of everything I try to do Taken for granted. No words of appreciation,

not even a simple “thank you” Angry for feeling angry Lacking control of anything So many disappointmentsAnger has risks! Depression ~ anxiety ~ digestive disorders ~ high blood pressure ~ ulcers ~ muscle tension ~ insomnia

So many emotions, so little time.

Guilt I can’t do enough I’m always saying the wrong thing “Should have” / “Could have” / “Ought to”

Guilt has risks! Beating yourself up over faults that are imagined, unavoidable, or simply human is counterproductive at a time when you need to be your best advocate.

So many emotions, so little time. Resentment

No time for myself Cancelled appointments / engagements / vacations /

social outings Have to do and take care of EVERYTHING Places you can’t go, things you can’t do Embarrassing moments My beautiful home is not so beautiful anymore Why am I the only one helping??? Why are they only helping him/her, when I am the one

doing everything???

Risks of Resentment: Without enough support or non-caregiving outlets, feelings of being ignored, abandoned or criticized can fester into anger and depression.

So many emotions, so little time.

Worry Do we have the right doctors? Are we doing the right things? Is this the right equipment? How will we ever pay for all of this? Is this going to work? Will life ever feel normal again? Am I going to be able to keep up with this?

Worry has risks! Being concerned is harmless. Obsessing, however, can disrupt sleep, cause headaches, overeating, undereating, intestinal issues and high blood pressure.

So many emotions, so little time. Loneliness

Friends and family back away due to uncertainty, fear, or a belief they aren’t wanted around.

New demands on your time mean no time for your own activities and outside interests and the people you used to see.

Loss of companionship in the way you were used to when your loved one is the one you are caring for.

Inability to go places and do things you used to. Feeling that no one else is experiencing what you are.

Feeling lonely has risks! Altered emotional states occur when our social networks change. Loneliness can lead to overeating, excessive drinking, smoking or drug use. Isolation can create stress and stress related illnesses.

So many emotions, so little time.

Grief Sadness about what has been lost. Sadness about what might be lost. Sadness about life changes that you have no

control over. Sadness for what your loved one must

experience.

Grief has risks! Depression is real, and can be a trigger for behaviors that are not healthy. Depression also leads to illness and chronic issues.

So many emotions, so little time.

Jealous Now that your loved one is garnering all the

attention, does anyone care about you? The glory goes to the one receiving the care – “you

are doing so well.” “look how much you are accomplishing.” While the caregiver behind all that is happening gets no recognition.

Caregiving provides no time for rest, while rest is important for the one you are caring for.

Being caught on the jealousy train … can cause you to loose out on opportunities for help, build resentment, and lead to many of the unhealthy emotions we discussed such as anger.

Video

Find the Humor in Your Situation!

Caregiver Survival

Tips

Caregiver Survival

Tips

PC Goes Out

the Window!

Caregiver Survival Tips Take care of yourself first.

When you fly on an airplane, the flight attendant instructs you to put your oxygen mask on first, before helping others.  Why is this an important rule for ensuring survival?  Because if you run out of oxygen, you can’t help anyone else with their oxygen mask. This is an important metaphor for those of you who run around taking care of everything and everyone else except yourself.

Eat well, sleep well, make your doctor and dental appointments a priority too! Join a caregiver support group, get assistance to provide you with time to do something you enjoy. All of these things can help eliminating many of the difficult feelings and associated health issues we discussed.

Caregiver Survival Tips Know Your Limits

While playing the role of caregiver, the need to be super-human is inevitable, but we know it isn’t possible. Ask for help with the things you don’t need to do yourself.

Stick to a Routine Routines can reduce stress for both the

caregiver and the individual you are caring for. With issues including brain injury, dementia or Alzheimers, routine provides security.

Caregiver Survival Tips Ask for Help

Even a few hours "off duty" can help you recharge. Make a list of family, friends, or neighbors to call when you need a break. Insurance may pay for assistance at home to give you a breather.

Get enough Sleep Most caregivers who say their own health has gotten

worse blame loss of sleep. You may be caring for someone who is up during the night, or may be letting worry and stress keep you awake. Don’t ignore your need to sleep! Solicit assistance during overnight hours, take daytime naps if possible, practice relaxation techniques at night.

Caregiver Survival Tips Join a Support Group

Whether formal, or informal, gathering with others who are experiencing the same emotions and challenges can be helpful. Having an avenue to ask questions, solicit ideas, or simply vent, can be a great stress relief tool. Groups may be available in-person or online, may be formal, or may just be regular meetings for coffee with a group you have developed.

Use Technology Simple technology like timers and reminders set on your cell

phone, tablet or computer can help you stay on track, and can help the one you are caring for gain greater independence. Eliminate worry by using GPS to track where your loved one may be so you can locate them easily if you become concerned.

Caregiver Survival Tips

Think Therapy … With an Open Mind!Pets can be

great assistants, trained for many uses, but are also just good companions!

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How to Help the Caregiver While You are Working With the One they are Caring For

Include them in your visit and your conversations – they are an important part of the process!

Ask how the caregiver is doing, and get a “real” response. If you hear “fine.”, ASK AGAIN!

Be equipped with a local resource guide for caregivers that provides resources for caregiver support, respite services, etc.

Form caregiver support groups from your client base. Help them make connections with one another.

How to Help the Caregiver While You are Working With the One they are Caring For

Insure caregivers understand adaptive technologies and practices as well as the client – they need peace of mind about safety and their loved one’s abilities.

Talk to the caregiver alone during an assessment – your client may forget to tell the whole truth about all of their barriers, or in some instances, may not realize the barrier exists.

Help your network understand the needs of caregivers and inspire them to include caregivers in the experience.

Online Caregiver Resources

Empowering Caregivers ~ www.care-givers.com

Caregiver Action Network ~ www.caregiveraction.org

National Alliance for Caregiving ~ www.caregiving.org

Next Step in Care ~ www.nextstepincare.org

Lotsa Helping Hands ~ www.lotsahelpinghands.com

Caring.com ~ www.caring.com

National Transitions of Care Coalition ~ www.NTOCC.org

A Few Great Caregiving Books

You'd Better Not Die Or I'll Kill You: A Caregiver's Survival Guide to Keeping You in Good Health and

Good Spirits

by: Jane Heller

Passages in Caregiving: Turning Chaos into Confidence

By: Gail Sheehy

The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself

By: Diana B. Denholm

If Only I'd Had This Caregiving Book

By: Mya Hennessey