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

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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.

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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

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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.

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Help feed, dress, and bathe the Pt.Make sure the pt eats and gets enough restSee the meds are taken as they are meant to

beKeep track of apptsTake care of insurance issuesDrive the pt places they need or want to goHelp with other family members’ needsTalk to health care team about the pt

***help the pt live as normal a life as possible.

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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.

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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.

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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.

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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.

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."

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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.

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*hints for caregiversDo 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

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Family meetingsGet 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

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Where to beginEvery situation is unique and

people’s needs vary. Many things need to be:

ConsideredDiscussedAgreed upon by all involved

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talkingHow 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)

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On death and dying

book by Elizabeth Kubler-Ross5 stages of dying:DenialAngerBargainingDepressionacceptance

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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 emotionalJournal book – let them write each day

their feelings, thoughts, etc

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Schedules24 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.

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PlanningPlan ahead

Get educated

Get organized

Find support

we will talk about each of these individually

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Are you ready ?

Sleeping – 2nd floor ? Plan ahead

Bathroom / bathing – shower chair, walker, and bedside commode on standby

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Items you may need Hospital bedBedside trayShower seatBedside commodeOxygenMedsOther medical supplies – for wound

care, personal care, bedpans, etc

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Get educatedAwareness of what the future can hold

and problems you may encounterWhat skills do I need to know ?

Bed bathsTurning pt every 2 hours Emptying cathetersWound care and dressing careHospice or nurses can teach you these

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Getting organizedWrite EVERYTHING downHave 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)***

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Support peopleHave list of resources and phone

numbersWhat type of help can each provide ?Things to consider:

Rides for kidsStandby person to come stay with pt.Someone who will just listenOnline banking, money transfer and bill

pay25

Hospice support servicesteam of professionals for ptPain and symptom controlSpiritual careFamily conferencesBereavement careVolunteersCounseling for childrenCoordination of care

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visitorsPeople may stop by without callingRest 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.

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Daily activitiesKeep pt involved as long as possibleLet them open their mail and billsLet them write checksSit down and do meal planning

togetherTry and get them outside if possibleIf too cold or hot – take them for a

rideGo to the beach or the hills of

litchfield, somewhere they enjoyed28

Movie matinees

Rent a movie, make popcorn

Whatever season – find something they enjoy and do it !!!!

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Down timeYou 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)

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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

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flexibilityThe 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…

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The patientLet 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*******

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Life contingency planThe 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

updatedEmergency numbers

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AAAAttitude

Ask for help

Appreciate yourself

Handing out 2 papers I found online – worksheet and caregivers bill of rights

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Life contingency worksheet

Item A B C

My will X

Power of attorney

X – top dresser

Life ins, policy X

Car title X

List credit cards

X (daughter)

Funeral wishes X – bedroom desk

Birth certificate X – safe

Marriage cert. X

Stocks X - desk36

Where things are stored: (address and where to look)

A=residence B=safe deposit box C=other

Medication chart

Med Directions Time given Time due next

Morphine 1 tsp q 4-6 prn 10 am 2pm

Morphine Above 2:30 pm 6:30 pm

Morphine Above 7 pm 11 pm

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

End of life decisionsAdvanced directives – medical care

Durable power of attorney – medical decisions

Legal power of attorney – to handle all matters

Letter of instruction – guide to your family

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Needs of the caregiverEmotionsFear, 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

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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

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How do I know if death is near?Profound weaknessNeeds help w/everythingAnorexiaDysphasiaCannot concentrateConfusionDrowsinessLapses of consciousness

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What can caregiver do ?Turn pt every 2 hours as they will

tolerateAvoid loud and sudden noisesStay calm, talk quietGet liquid pain meds from hospice or

drUse ice chips or sip fluids if possibleApply cool moist wash clothes to

head, face and neck for comfort

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More end of life changes:No interest in foodMouth dries outMucus in mouth collects in back throat

making distressed rattling soundsCirculations slows, skin darkens, skin

coolerBlood pressure may be hard to hearHeart rate may become faint, rapid, or

irregularBreathing may speed up and slow down

– cheyne-stokes respirations43

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.*****************

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Common end of life questionsWhat is going to happen to meHave I done everything I should haveWill my wishes be carried out after I dieHow much pain and suffering will I haveHow long will this all lastHow can I burden my family this wayWhat am I going to do about moneyWhat if my family cannot care for me at

the end

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Always be as honest as you can when answering questions

If you don’t know the answer, get itBe sure everyone in family has a

chance to be alone and say goodbyeLet 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”

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Once patient dies:Call hospice – they can pronounce

death (or doctor)

DO NOT CALL 911 – THEY MUST RESUSCITATE

sit and reflect – no regrets…..

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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 !!!!!

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If anyone would like more info or to talk with me directly; my email is JF831@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.

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