What is the End Game ?
It is the taking care of a loved one that is getting too old to take care of themselves or one that has become crippled or mentally or phsically handicapped in some way.
This is usually brought on by illness, age, an accident, a death (mother or father) or an incident where an elderly person needs additional care.
--- Where You Are Now
You may be lucky enough to not have to do this, however, usually a relative or someone in your family will have to take on this responsibility at some time in the present or future. If you are in this position now, or are about to be in this position, you can use the information in this handbook to help you prepare and deal with the recepient of your care, relatives, and the people associated in some way, with the situation.
--- What You Can Do Now ---
1. Read this entire book first.
2. Get a notebook and take notes and log your concerns, anxieties and questions.
--- Before You Take This On
Get everything you can in writing.
When in doubt, get it in writing.
--- The List of Things to Check
Get the will of the one you will be taking care of.
-- send copies to all involved
Get the durable power of attorney taken care of.
1. you can get this at the bank or thru a lawyer
2. get it while your patient is still coherent
3. get this on each other if you are married
Get the medical surrugate taken care of.
Get the funeral arrangements taken care of.
1. the sooner the better for the patient
2. do the same for yourself and your spouse
--- Other Considerations
1. Get all of the final arrangements and wishes taken care of. 2. Put in writing all final arrangements and dispersements of items not included in the will. Make sure all involved have a copy
3. Get the DNR taken care of. ( Do Not Resucitate Order ) a. Find the wishes of the patient and complete the DNR 4. Locate all bank accounts 5. Get a list of accounts including any 401k or investment accounts as well as checking and saving accounts. 6. Locate all insurance policies a. Get all the policy numbers and company information 7. Review and determine if you need to get a POD ( Payment On Death ) a. Gives you access to the patient's bank accounts at the time of death. 8. Clear up any and all loose ends. 9. Find any other obligations and clear them up.
--- Moving the Patient
If you are moving a person from one state to another, make sure there are no liabilities or litigation or obligations that are outstanding, BEFORE you take them out of state. It can be illegal to move someone if there are any court prededings going on that have not been resolved or completed.
Talk to all relatives of the person you will be taking care of. Check to see if there are any outstanding phycal issues, financial issues or legally binding issues or outstanding obligations and/or bills.
--- Their Wishes vs Your Wishes
Clear up any expectations before taking on the responsibilities of the patient. Your wish may be to provide as much quality of life as you can but be careful what their wishes may be. Their wishes or expectations may be overwhelming, including but not limited to taking on every problem they have as well as feed, bath and clothe them as well as fix meals, clean house, do the laundry and provide all their transportation.
--- What To Expect When it happens
Most people don't plan for this problem, but it will probably happen to you at some time. All of a sudden your life changes and all of a sudden you are taking care of your parent(s) or elderly person from your family circle. It's best to be ready for it and the following will help raise your level of awarenes and help you deal with it.
--- Issues that will come up: social, legal, medical, emotional, within the family.
a. Set limits - how far are you willing to go ?
b. Evaluate expectations - what is expected? Exactly? And by who?
c. Is there a 24 x 7 need?
d. Who determines the 24 x 7 need ? a doctor? A social worker ?
e. Engage all involved in that patients family including all medical
social and legal.
--- Handing Out Responsibility
Who will actually be the care taker? Will it be you or a brother or sister or .... ? Try to clear this up as soon as possible, because when the moment comes, most people are reluctant to speak up or step up to the plate. Will it be one person or will it be a husband and wife team or both with the help of other siblings and relatives ?
--- The Downhill Run
Unless this is a temporary situation, the person you are taking care of may deteriate over time. Both physically and mentally. You need to be prepared for that. We all get old if we make it that far. And time will start to take its toll. Be ready. It isn't pleasant to deal with but at least if you know it's coming, you are better prepared.
--- Patient's Present Physical and Mental Status
Address each of the hierarchy of needs. Physical, environmental as well as physical body. It should be safety first, then physical limitations or needs and then medical needs. a. Medication, treatments, treatment schedules b. Dietary needs c. Medical history d. Health surrogacy e. Living will/dnr f. Health aid assistance and medical visits. All need astringent evaluation
--- Things to Consider Now and in the Near Future:
1. Emotional limit setting within the environment? Are there wild mood swings? Is the patient cooperative, grateful, or thankful? Or is the patient confused, mentally deficient, angry, rebellious, physically or verbally abusive?
2. Social engagement - can they go to a senior citizens center, day care ? Can they drive or ride the bus? Can they take a special van service?
3. Psychological evaluation -- altered states, confusion, including but not excluding medicines or medical history -- ex. diabetes - high low blood sugar -- is there mental status altered?
4. Do their med's cause them to be confused or disoriented? What is their list of medications and how often do they take them?
5. Are there blood pressure med's?
6. Medical effects ( are determined by state laws and standards )
7. Do they have the ability to perform daily living activities without supervision? Will they stay put if requested? Are they stubborn to the point of endangering themselves?
8. Setting boundaries and limitations for both patient and care taker.
9. Actual physical boundary setting. Can you trust them to follow directions?
10. Environmental issue -- does it need to be altered? Ramps? Shower
Rails? Canes, bedside commodes, oxygen, vision or hearing deficits.
11. Personal Care -- do they have a med alert situation? Is there in home care provision? Is there an extra-home ( granny nanny ...) provision?
12. Can they medicate themselves ? Can they bath themselves and provide and feed
13 .Spiritual needs -- Is there an institution that will provide in home ministry? Does the
person have religious decisions to make? Do they have access to the church or
religious institution. How would the patient get to the church?
15. Are there special transportation needs?
16 . Family -- visits, inputs, threats, participation levels, responsibility, transportation for
doctors and medical appointments.
17. What is the level of participation? Schedule ? Is someone to provide transportation and be there to take care of the patient and or provide the in home care - bathing -- medication -- food -- treatments -- getting the patient up and around.
18. Final disposition -- what is the patients final disposition ?
Hospital? Assisted Living? Extended care? Acute care ? Nursing home?
19. Legal Issues -- Final Instructions / DNR / Health Surragacy
More Details - Patient Care and Care for the CareGiver
-- Taking care of yourself first
Protect yourself -- if you are going to go through this, make sure you read this entire list and ask questions of those involved, including family members, bankers, lawyers, doctors, hospital administrators and funeral homes and nursing homes.
-- What You Can Do When It Happens
A notebook -- write down what needs to be done. Also -- write down your ultimate goal. For example, for us it was to Endure and to provide the best quality of life we could for the one we were taking care of for as long as possible. We listed all contact information and all the issues and problems we had to solve as we went along. We were able to address all issues and keep a track record of what we had to deal with.
-- Ground Rules
Make sure everyone, including the loved one ( if possible ) is on the same page. Make sure all understand what is expected in terms of care, duties, bill paying, chores, shopping, cooking, cleaning, maintenance, transportation and general all around taking care of business. Cover as many areas as possible in the beginning and update the ground rules as needed over time. This process is VERY important. Do it immediately.
-- A Level Playing Field
make sure all family members are on board. Make and write down any agreements about relieving you for periods of time and for agreed upon breaks from the care taking. Make sure all agree and don't shirk their responsibilities just because it's inconvenient or the other party is ' busy ' . You will need some time off and you need to hold true to those agreements.
-- It's All About Me
This is a biggie. The person you are taking care of has up to now, been in their own world and probably has been taken care of until now. If you find that person thinking ONLY about themeselves, and if you find they don't seem to care about what you think or feel, then you have an uphill battle. In order for this to work and for it to be acceptable, that other person needs to know that it's not just about them. It is about working to gether as much as possible, otherwise, this will be a grueling experience. If the other person still has mental cabablities, make sure to make a point that it is NOT just about them. The people trying to help and the care takers need to be considered and respected. The person being taken care of needs to know it is a two way street and that they need to work with and cooperate with the care givers.
-- From Pleasure to Pain
One indicator you need to measure is how grateful and thankful a person is that you are caring for. If that person is totally focused on themselves and only their needs, their feelings and their point of view, there are going to be problems. You are not a slave and you do not need to be treated like one. The ideal situation is one in which the care giver and the recepient of that care work together and that the recepient is grateful, at least most of the time. However -- that is not usually the case.
-- If they are grateful and thankful, you will have a better experience taking care of them.
-- If they are totally self centered, and think only of their own problems, and their own situation, and don't consider others and the situation as a whole, including the caretaker's situation, then there will be a lot of grief.
Impact -- how does this person effect the physical, financial and family environment.
1. Get agreement from the patient and the care giver as to who is responsible for what. Get it in writing and have all parties sign it. This way expectations are set and you have a level playing field, at least to start with.
2. Money -- Paying Bills -- and all other Expenses
a. keep track of all expenses
b. every week -- list in a journal -- how needs and demands have been
ex. doctor appt / therapist / special foods / hair cuts /
oxygen needs / state provisions / medications / social
engagements / bus passes / ancillary events
c. what does the state provide on item 'b' ?
3. get the patient to sign for and pay for personal safety devices
a. med alert
b. cell phones
c. heart monitors
4. send a report/expenses to each family member including lawyer.
monthly at least, weekly is better
5. Develop realistic goals with all involved including medical reports
or incidences that affect patients welfare and care. Keep copies of
every expense, med report, legal repot and file each letter. Document
6. Document Document
It is time consuming and irritating but will keep your life clear of
everyone's questions, legalities or retributions.
7.Get videos of family meetings and the patients interaction -- most
important -- don not fall victim to abuse or manipulation -- limit set
inconveniences from the outset -- everyone must agree that at some point.
This point is beyond your abilities to provide a safe, rational and
non-sacrificial environment for all. Does this person have the potential?
for acting out violence, or threats -- consider your families safety 1st.
8. Prioritize your lives 1st. You must and should do as you need and wish
independent of this patient's life. Resentment can build quickly and you
must all agree to parameters that can be life building, NOT life
draining. You must all agree in writing if possible or record it, to the limits the
family will endure.
9. The patient's need and demand must not exceed the needs and the desire of
the care taking families. At the point at which it becomes obvious and necessary to remand the
patient to a full time facility all must agree and be absolutely positive
to have the legal right to place the patient in an extended or acute care
facility for their medical care and safety as well as your family's
sanity and provision. Everyone must be on the same page. If other
family members not in residence, that object or withstand and not allow
the patient to be remanded to a facility it must be stated or written
that they will come and retrieve the patient immediately.
" The End Game "
Dealing Directly with the Patient
Yes -- they are people and deserve the right to some decision-making
options within the ability to provide.
Those that are diminished in vision, hearing, waling and manipulating their environment productively tend to have feelings of anger, frustration, confusion, and most will be motivated to service at whatever the cost.
Those whose conditions involve their mental cognitive emotional status
provide an even more stressful effect on themselves and others. They do not always understand or accept the reactions repetition of limits and conditions they are now forced to live by. Anger can manifest in a myriad of manners... including withdrawal, striking out, criticism, threats etc... They will probably remain in denial and constantly be a
potential source of danger to themselves and possibly others. You will not succeed in convincing them by endless orientation to their disease, positive that you are thing to act on their behalf as an able caring provider.
Disposing the patient from their home, environment family and friends is not always unavoidable. The patient is already recognizing that they are losing control of the body, home, friends and family. The confusion and lack of ability to control and manipulate themselves set the stage for emotional decline, denial, depression, anger on the rarest of occasions, gratitude that someone will be there and care for them at the
Helping those whose deficits outweigh their inputs counseling with a professional is an excellent idea specially if it can include the whole family and caregiver teams. Some patients are rational and grateful and lightly cooperative -- these are probably not those that will need extra familial care and housing.
Yet changing environments, taking those already compromised by illness or
age will be confused by the change of physical environment and limitations. That confusion and lack of familiar objects the can recognize, increase the chance of in situ accidents, falls, to themselves and the endanger the new environment i.e. gas stove left on, leaving a sink or tub running, stairs where they did not have any and getting to
the bedroom or bathroom ( not knowing where they are... ).
Disorientation is huge. They need a safe and secure space with as many of their own possessions available to them. Pt family pictures on the walls, their own bed, books, tv -- it gets harder to learn and use new technical equipment . Don't' think that because you hand them a remote, show them how to use it, that they will remember -- they won't.
Rather make a chart, list, diagram and be very specific and tape or laminate it to a table or chest. Put night lights on the path to the bathroom, kitchen and the bedroom. Use calendars, and large numbers, and cross out days. Use a note board near the kitchen, dining and living room and always put up date, day, month and any pertinent information
listed as your plan of the day, their appointments, phone numbers, menus. Get magazines if the patient can still see and read.
Encourage the patient to look forward by ( blackboard) plan to a special meal, watching a sporting event, spending a specific period of time with as many as possible to play cards, checkers, -- game of choice. This is not only social but can encourage and support ' open'
Exercise -- you should encourage the patient to keep moving, stretch however there is the caveat -- if the patient has the tendency to take off -- get confused -- or get lost , you might be spending your and your neighbors time, and effort, looking for a lost and confused person.
ABC's of this... make sure they carry and id and have your address and all phone numbers on their person at all times -- encourage them to stay in the limits of the neighborhood. Let the neighbors, nearby stores, hospital and police know that this patient is occasionally left alone and
has some limitations -- this could save so much grief and anxiety to all and yes we all know this is a human being and as such, has free will
, options and pertinent decision making abilities for their own fate.
But ... after 3 or 4 frantic searches, or all out community effort to find
this person, you will realize that the encumbrances of primary care give means you have ensured this patients safety and welfare.. instead... offer to walk 2-3 or more times a week. that you would enjoy their company.
Some activities of daily living or necessities have no wiggle room or compromise room. the patient must go t all medical legal or rehabilitative appts. Death is the only excuse. This will protect you and keep the patient on the best path for their continued existence. No excuses, if the patient complains -- don't like the doctor -- waste of time --,, this is a blanket form of manipulation -- there will be no support for your actions if the appts are denied or delayed.
-- Prioritizing you and your family's life.
Paramount! The most sacrificing, giving, loving people can be left feeling angry, discouraged, tired, vampirized and struggling to keep a Positive, patient attitude. You are human -- your effort is laudable but if at the end of the day week or month, your 'love and sacrifice' has brooded to survival you will find the demons of resentment and anger
constantly creeping over to all of your other relationships.
It seems the ' right' thing to take care of another and many do... but...not at the danger and expense of yourself and your immediate family. Tension, anxiety, fatigue and guilt are true demands that destroy peace and love in most family situations. Constantly think and find ways to openly evaluate the effects and results that this added burden has on the overall individual members of your immediate family.
Find time and a place away from the patient every week if not more often to generate an environment of open, honest, non-judgmental feelings and facts that this
patient and events could be causing. Always leave yourself and your family with a back door. Know when to say enough and agree it is in your best health and family interest for the patient to be placed in a different environment, be it another family member, assisted living or extended care.
The misery of the family far surpasses the demands of the patient in a change of residence. You will know you have done the best you could -- isolating your spouse, children or siblings is NOT worth temporary outburst and anger of the patient. If big IF... the patient realizes the burden and dissention they have created they may volunteer
to go to a position more suitable for their current needs.
Do not back off and hope for a return of peace renewed commitment, as you will not get a more graceful chance and potentially more positive relationship with the patient if they are able to reside elsewhere.
Avail yourself to very opportunity, agency, or group to help with all the needs of the patient. Most states, cities and counties have large numbers of organizations to help with home health care. If you are not able to physically provide care for the patient, look into home health aides, nursing providers, senior citizen centers, day care centers and
look at available social environments. Does the patient belong to any veteran associations Elks? etc... Do they have meetings.. ?
Look into you areas transportation systems for disabled or elderly. Do they warrant van pick up and delivery to social or rehabilitation environments? Find and get appt with gerontologist and work up a whole life plan. Look at AARP or elderly advocates programs these folks have resources and experience.
Spiritual or religious organizations for home ministry. Often times, the diminished need to do, help. belong or participate on some level. In the hierarchy of human needs, we all need some form of appreciation and purpose. Having a reason to get up -- providing a skill or some 'thing' Is a very basic need to all? They are also very vulnerable to the concept that they no longer have something to give ' be it a life
experience, a story, or companionship to another.
Sometimes these organizations can provide the medium in which those patients can be a valuable source. Also realize ... socialization on any level can continue life interest and involvement. You should not and probably cannot be the only source of human contact and compassion for the patient. It's not fair to either party.
The Basic Practical Elements --
a. Physical Elements
b. Patient's level of self-care
c. Complete understanding of med, Dx, TX - meds
d. Patient's nutritional needs and status
e. Providing access to meds, food, bedroom, bath when no one else is
f. Patient understanding and navigation in the home environment
g. Putting absolute need by patient if negotiating in the environment is
not reasonable... phone... flashlight nearby... using depends... cooler
and nutritional drinks or foods, tv tray, lift chair,
h. Med Alert Device -- and know how to use it... for patients left w/o
i. Large laminate checklist -- with phone numbers - leave the phone next
to the patient. Ask you neighbors for friend to check in on the patient
at specific times.
. . . add to the above list based on your particular situation as it is impossible to list them all.
-- Managing the Patient's Life
As you can see, there is a lot to deal with. It's hard enough to manage your own life, much less dealing with someone who can't ! The above list is for starters and you can add to and adjust as needed.
It will take some time to get into a daily, weekly and monthly routine.
-- Creative Adjustment
This is one of the major ways to deal with the situation. There will be challenges and this is the approach. Creative adjustment means you analyze the situation and make an adjustment to solve the problem.
Polly liked to smoke and we didn't feel we should take that away from her as it was one of the only pleasures left. However she was falling asleep at the table with a cigarette in her hand. We couldn't watch her every minute of the day so we had to come up with a solution. Here it is. We asked her to put a metal cookie sheet on the table. It would catch the cigarette if she dozed off that was still going. Did it solve the whole problem? No but it helped to prevent the cigarette from burning the table, falliing or rolling off the table and burning her clothes and burning her up ! My wife could not lift her mom to take her to the bathroom. It was also difficult to get her mom out of the wheelchair, even if she could push her to the bathroom door. So I changed my schedule so I could be there during the morning, came home from work at 4:00 pm and stayed home for an hour for dinner. Then I was home at 9:00 pm. Was it perfect ? No but it gave us a schedule to work with that gave my wife the added assistance she needed to deal with her mom's bathroom visits and at night, I picked up her mom and put her in bed. This is the kind of ' creative adjustment ' you will continually have to come up with to solve various problems.
-- Verbal Abuse - the 2 x 4 Up Side the Head
If there is one factor that can make or break your ability to take care of the patient is verbal abuse. If the patient becomes depressed, or sad, or angry or all of the above, they are likely to start venting all of that with a barrage of complaints, offhand or cruel comments, criticism, profanity, accusations, guilt and any other number of abusive statements. It is the one thing that can be the hardest to take when you are the care taker. So be aware of it. If your patient is unhappy because of their condition or frustrated, or if they don't want to take responsibility for their situation, and want to blame your for their bad moods then watch out ' cause yer gonna git it ! '
The ' 2 x4 ' analogy is for those times when you least expect it and then
' wham ' you get a verbal abusive broadside for no apparent reason.
Unfortunately, if they are insensitive or mentally deficient, or both, there may not be anything you can do about it except go out in the back yard and cool off. As your patient gets older, it may get worse. This may be your biggest challenge and you will need all the control and patience you can muster. When it gets to this point - make sure someone can spot you a few hours or a day and get out of there. Take a ride, go to lunch, a walk on the beach, a picnic, shopping, whatever will get the abuse out of your system. Let us repeat, that this was the hardest one to take and, it was the one thing we could resolve with creative adjustment. We just had to take it. Thank Goodness - it didn't last long. Warning ! No degree of yelling back at your patient or rationalizing with them will usually work. If the patient is not in any danger, it's best just to leave the scene slip out the back door and get out of the line of fire. This is also an indication that your patient may be losing it. A call to their doctor can confirm this and an assesment of the patient may be necessary and it may be time to call in your markers and get help from the rest of the family or consider assisted living or a nursing home.
from a distance
measuring every day
-- inheritance and probate
what to expect
basic laws and steps
the law protects all parties
-- what to look out for
different points of view
an accounting from start to finish
threats vieled and explicit
-- horror stories
it can happen to you
-- its best to be prepared
take care of loose ends
-- always seek advice
friends who have been through it
nursing home administrators