Caring for Caregivers Perspectives on Life From the Other Side of the Bed

1. Caring for CaregiversPerspectives on Life From the Other Side of the Bed AgrAbility National Training Workshop, April 2, 2014 Kathy Smith ~ JoBeth Rath ~ Tess McKeel

2. “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

3. 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.

4. 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

5. Video

6. What did you hear? • Helpless • Lonely • Sad • Frustrated • Tired • Sad • Depressed • Overwhelmed • Guilty

7. 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

8. 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 disappointments Anger has risks! Depression ~ anxiety ~ digestive disorders ~ high blood pressure ~ ulcers ~ muscle tension ~ insomnia

9. 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.

10. 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.

11. 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.

12. 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.

13. 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.

14. 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.

15. Video

16. Caregiver Survival Tips Find the Humor in Your Situation!

17. Caregiver Survival Tips PC Goes Out the Window!

18. 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.

19. 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.

20. 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.

21. 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.

22. Caregiver Survival Tips Pets can be great assistants, trained for many uses, but are also just good companions! Think Therapy … With an Open Mind!

23. 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.

24. 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.

25. 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

26. 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