Preparing caregivers, family and patients for end of life care at home.

1. Preparing caregivers, family and patients for end of life care at home.

2. About me…. • 30 years in the medical field • Hospitals, pcp, surgeon, ortho, and office manager • Experience w/various family members w/end of life care • I am not an expert, and do not work for hospice. I just hope my knowledge and experience can help one person, or help you educate families.

3. Some statistics • Approx. 1.4 million people receive cancer diagnosis each year • Cancer affects the ENTIRE family • Caregivers spend approx. 90 hours per week caring for loved ones with end of life care

4. The journey is not easy, the road will have many bumps – there will be anger, guilt, depression, and tears. However, there CAN also be laughter, and memories you will cherish for a lifetime.

5. Teamwork • This experience requires teamwork – • Including: doctor, patient, hospice if they are involved, the entire family, friends and you, the caregiver are at the center of this “wheel” • Every team needs a captain – we will talk more about this shortly

6. Help feed, dress, and bathe the Pt. • Make sure the pt eats and gets enough rest • See the meds are taken as they are meant to be • Keep track of appts • Take care of insurance issues • Drive the pt places they need or want to go • Help with other family members’ needs • Talk to health care team about the pt • ***help the pt live as normal a life as possible.

7. What is a caregiver ? • Sometimes, it is just being there. In the silence, holding their hand. Letting them know they are not alone…not now, or throughout this journey.

8. Decisions to be made: • Is homecare right for us? • What does the pt want ? • *** Is the family capable of providing what is needed ? • I recommend the family (alone at first) visit and speak to hospice provider to see what they can receive for help and if it is realistic to what they can provide.

9. It is at times – exhausting. • It is physically and emotionally draining. • The caregivers must at times put their life on hold. • Simple things like grocery shopping and errands have to be carefully planned around another’s schedule or the hospice health aids appointment.

10. Others however, after a few weeks resigned to the fact they were in over their heads and could not do all that was needed. • These were the saddest cases – as the pt’s truly wanted to be at home and yet not able to afford to pay for the 24/7 care that their families could not do • Compromise: one family took pt home on weekends until their health declined too much for this to be possible. • schedules at work, kids and obligations made full-time homecare impossible.

11. Preparing yourself: • "You need to learn ways to take care of yourself. Because if you're not taking care of yourself, you can't take care of anyone else. Don't be afraid to ask questions. Don't be afraid to ask for help."

12. Captain: • If there are many people involved in the care – it is best to name a “captain” • This person will be the one to organize the schedules, be the contact person for doctors, etc.

13. *hints for caregivers • Do NOT be afraid to intervene • Ask questions until you understand the answer • Remember that you know things about the pt that the doctor doesn’t

14. Family meetings • Get everyone involved • Set time convenient for most if not all • Talk about changes, plans and help you may need • Express any concerns the pt has talked about

15. Where to begin • Every situation is unique and people’s needs vary. • Many things need to be: • Considered • Discussed • Agreed upon by all involved

16. talking • How much does the pt want to be involved in care and decision making ? • What are their final wishes ? Are they realistic ? • Are their things in order ? (will, power attorney, etc – we will discuss these later)

17. On death and dying • book by Elizabeth Kubler-Ross • 5 stages of dying: • Denial • Anger • Bargaining • Depression • acceptance

18. Ask the pt. If they have any questions • Most have regrets that children or grandchildren will not remember them • Scrapbook – where they can write things about memories/pictures • Video – may take time – very emotional • Journal book – let them write each day their feelings, thoughts, etc

19. Schedules • 24 hour / 7 day “job” • Family must sit down and write schedule • Provisions for illness, family obligations, etc. great to have standby people who will help and come sit with pt if needed • RESPITE CARE - • this is service of hospice where you can temporarily place the home care pt in a hospice facility for break, planned vacation etc.

20. Planning • Plan ahead • Get educated • Get organized • Find support • we will talk about each of these individually

21. Are you ready ? • Sleeping – 2nd floor ? Plan ahead • Bathroom / bathing – shower chair, walker, and bedside commode on standby

22. Items you may need • Hospital bed • Bedside tray • Shower seat • Bedside commode • Oxygen • Meds • Other medical supplies – for wound care, personal care, bedpans, etc

23. Get educated • Awareness of what the future can hold and problems you may encounter • What skills do I need to know ? • Bed baths • Turning pt every 2 hours • Emptying catheters • Wound care and dressing care • Hospice or nurses can teach you these

24. Getting organized • Write EVERYTHING down • Have all your appts as well as pts together on one calendar as to avoid conflicts • Phone numbers in 1 place • Consider small local pharmacy that delivers • ** consider peapod (stop an shop)***

25. Support people • Have list of resources and phone numbers • What type of help can each provide ? • Things to consider: • Rides for kids • Standby person to come stay with pt. • Someone who will just listen • Online banking, money transfer and bill pay

26. Hospice support services • team of professionals for pt • Pain and symptom control • Spiritual care • Family conferences • Bereavement care • Volunteers • Counseling for children • Coordination of care

27. visitors • People may stop by without calling • Rest is very important – for pt and you ! • Put large note on door: • Sorry… • We are resting; if you would please call b/w 4pm and 7pm we would love to set a time that is better for you to come visit. We do appreciate your concern and hope you understand that “spontaneous” visits are not always best. Thank you.

28. Daily activities • Keep pt involved as long as possible • Let them open their mail and bills • Let them write checks • Sit down and do meal planning together • Try and get them outside if possible • If too cold or hot – take them for a ride • Go to the beach or the hills of litchfield, somewhere they enjoyed

29. Movie matinees • Rent a movie, make popcorn • Whatever season – find something they enjoy and do it !!!!

30. Down time • You both need “down time” activities • Reading , crosswords, small table puzzle, board games, cards, crafts, try something new • Learn something new from each other – my mom taught me to knit…I taught her about digital cameras (she was 89)

31. Buy notebook – • Have everyone “journal” in it with memories • Great “quiet times” for you and pt. to read, reflect, and talk about later • And for you to treasure always

32. flexibility • The ability of the pt to participate in things will change from week to week • You need to be flexible – think outside the box • Break the old rules – yes, its ok to eat in the living room…

33. The patient • Let the pt. take part in decisions about themselves • Poor choices ? Talk to them • Set limits • ******encourage them to talk about other things than the cancer and illness*******

34. Life contingency plan • The name and phone number (s) of: • Who is 1st person to call • will take kids to school • Who can help w/shopping ? • Who can run my errands ? • Who can take pt to doctor ? • Primary contact to keep everyone updated • Emergency numbers

35. AAA • Attitude • Ask for help • Appreciate yourself • Handing out 2 papers I found online – worksheet and caregivers bill of rights

36. Life contingency worksheet Where things are stored: (address and where to look) A=residence B=safe deposit box C=other

37. Medication chart Use a sheet for each med and new one each day….save them !!!!

38. End of life decisions • Advanced directives – medical care • Durable power of attorney – medical decisions • Legal power of attorney – to handle all matters • Letter of instruction – guide to your family

39. Needs of the caregiver • Emotions • Fear, anger, guilt, grief, anxiety, depression, feeling alone, isolated, seeking meaning..helplessness • These are all normal and part of the process of watching a loved one die • Your partner and family have needs too: • Alone time, intimacy, sex, demands from children for time and attention

40. Great book for kids: • When a family member has cancer; dealing with a parents terminal disease • (I apologize that I do not know author) • For small kids – many good books about heaven and death – ask librarian

41. How do I know if death is near? • Profound weakness • Needs help w/everything • Anorexia • Dysphasia • Cannot concentrate • Confusion • Drowsiness • Lapses of consciousness

42. What can caregiver do ? • Turn pt every 2 hours as they will tolerate • Avoid loud and sudden noises • Stay calm, talk quiet • Get liquid pain meds from hospice or dr • Use ice chips or sip fluids if possible • Apply cool moist wash clothes to head, face and neck for comfort

43. More end of life changes: • No interest in food • Mouth dries out • Mucus in mouth collects in back throat making distressed rattling sounds • Circulations slows, skin darkens, skin cooler • Blood pressure may be hard to hear • Heart rate may become faint, rapid, or irregular • Breathing may speed up and slow down – cheyne-stokes respirations

44. Ice chips for hydration • Humidifier in room will help secretions • Bed at 45 degree angle – if tolerated • ********* continue to speak to the pt with calm, reassuring tones.*****************

45. Common end of life questions • What is going to happen to me • Have I done everything I should have • Will my wishes be carried out after I die • How much pain and suffering will I have • How long will this all last • How can I burden my family this way • What am I going to do about money • What if my family cannot care for me at the end

46. Always be as honest as you can when answering questions • If you don’t know the answer, get it • Be sure everyone in family has a chance to be alone and say goodbye • Let the patient know – at the end – that it is ok to go….assure them you all will be fine. • No regrets, no guilt, no “should have done”

47. Once patient dies: • Call hospice – they can pronounce death (or doctor) • DO NOT CALL 911 – THEY MUST RESUSCITATE • sit and reflect – no regrets…..

48. Know that what you just did – being there for everything – through it all… • Was the most loving, caring, compassionate thing that anyone could have done. • Be proud of yourself….and most important • When it is all over – take some “you” time. • The impact will hit when it is all over…seek counseling if needed, now • Take care of you !!!!!

49. If anyone would like more info or to talk with me directly; my email isJF831@aol.com • I am so sorry I could not be there; but after hospitalization last week, due to viral myocarditis, my cardiologist would not allow it.