preparing caregivers, family and patients for end of life care at home. 1
Post on 11-Jan-2016
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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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