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Guide to Elder Caregiving
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June 11, 2013
Today, we have
a big deviation from our normal style of newsletter. But because I am seeing a rise in the number of people
who are caring for their elderly relatives and are a bit overwhelmed by their new duties, it seems as though there is an increasing
need for this kind of information.
I will be drawing on my own hard-won experience as well as what
I have observed with others. In my case, I had asked Guru/Soul to get me home from traveling the world
teaching and healing when my parents needed my help.
Well, after a couple of
years, I had scheduled myself to take a month’s rest from constant traveling at my parents’ home.
And true to Guru’s promise, within 5 days of arriving there, both of my parents came down with mortal conditions—my
dad had a stroke that put him into a state of dementia with the inability to walk. Consequently he lived
in a nursing home where he got round the clock care for the rest of his life. And my mom was diagnosed
with metastasized cancer, with all the pain, etc. that that entails.
So, I immediately
quit all my traveling commitments and stayed with them for nine years. This included putting their finances
in order, overseeing their medical care including subsequent operations, diseases, hospice care, etc., and doing my best to
see that they were supported as well as they could be under the circumstances. In no way am I advocating
that anyone else quit their lives for that length of time. That is just the way I chose to carry this out.
And I am very clear that I was not the victim of their illnesses, but that I chose the caretaker role that I did.
And no one should feel guilty if they can’t do all that. Just work out things as best you
can to balance and cover all the bases, including your own.
Please be very aware that I am not a
lawyer, doctor or accountant, just a caregiver. So, please double check all this information with the appropriate
So, dear Ones, here is
a list of things that should be in place BEFORE any emergency, or disease occurs. If these things are not
in place and your parents are approaching “a certain age,” then I most strongly advise you, your parents and your
siblings to have some loving and kind family meetings to put all of these things in place. You will certainly
head off tremendous struggles and heart pain if you do that BEFORE emergencies arise. I am so grateful
that in our family’s case the following things had been done before we needed them, and this is what really saved us
in the long run.
· Long-Term Care insurance
for both of them. This is insurance that pays a certain amount for care at a nursing home or in-home care
when they need it. It doesn’t usually pay for all the extras that crop up, but it usually does pay
the big chunk. Check the going rates of your local nursing homes and compare it with the pay-out rate of
the Long-Term Care Insurance. Do it soon because you usually can’t get it once your elder has had
a major health problem.
that put you or your siblings in charge. Especially in this day of increased privacy laws, you
may not be able to use your parents’ funds to care for them unless you have all the legal work done before they are
out of commission.
If your parents are still married, then this Trust needs to be made BEFORE one of them passes on—not
after. In our case, we had a “Revocable Living Trust” drawn up by a reputable
lawyer who had much experience in this area. The results were priceless in helping me care for our parents.
Even if you don’t need the inheritance tax advantage of such a Trust, here are the things that the Trust provided:
The lawyer put all of our parents’ assets—house, car, savings, stocks
and bonds, life-insurance, etc. into ownership by the Trust. The Trust is also responsible for all its
debts. At this time—whether you are making a Trust or a simple Will, all the Trustees or Owners and
Inheritors should come together to “wisely agree” on how everything should be divvied at the demise of the last
parent. Such things as dividing your parents’ land holdings into plots for each offspring if they
want them, or a decision to sell the home and dividing the proceeds equally, dividing assets equally or other special provisions
should all be worked out and written into the Trust. Or in lieu of a Trust, all these details should be
agreed upon and written into the Will WAY BEFORE the elder cannot reasonably participate in the process!
This is when great kindness, love among all, and tremendous healing of sibling
rivalry must happen—or else all the siblings can go to “hell in a hand basket” when their last parent goes
to heaven, or even when they are on their way—so painful for everybody. This foreknowledge eliminates
a whole lot of assuming and conniving by the inheritors. As Yogi Bhajan would say: “Know the sequences
that lead to the consequences.”
So, with this Trust, my brother and
I became co-owners (Trustees) of all their assets after they passed, and we were able to operate on our parents’ behalf
at their time of need. That ability lifted a huge burden from our shoulders and gave us the power to act
for our parents’ sake when we were trying to concentrate on their heavy medical needs.
The following great documents are often made by the lawyer who creates the Trust, but they can also be drawn
up without a Trust. They are really, really necessary. Believe me, the lawyer’s fees are amazingly
well worth it!
o Power of Attorney was made to myself
and my brother. With this, we had the ability to effectively use all of our parents’ funds for their
care to pay all their bills when they were not able to act. We were very conscious of our heavy responsibility
to be the best stewards of their assets for their best care, and to be able to extend that care over an indefinite time in
o Medical Power of Attorney was made
to myself and my brother. We could make those serious medical decisions when they were needed.
Sometimes medical institutions are hesitant to accept even family members’ decisions without this document.
And you especially need this document if you are caring for a more distant relative such as an aunt, a cousin, or an
unmarried partner. My brother and I made the most important decisions together with input from the
parent who was mentally able to participate. Any decision made on another’s behalf demands immense
responsibility and consideration by all parties.
o Medical Directive.
This document declares your elder’s wishes in case they wind up on life support or have a life-or-death medical
emergency. It comes in really handy when you are deciding whether or not to put in place a “Do Not
Resuscitate” order when they go into the hospital or nursing home, or deciding whether to put in a feeding tube, etc.
It gives you and everyone incredible support to make these most difficult decisions on their behalf.
Will: I can’t emphasize the importance of
this enough. Here are some choices:
§ Pour-Over Will. In
the case of the Revocable Living Trust, since the major assets are already owned by the Trust, this is a “Pour-Over
Will,” which means that everything that was not legally changed into ownership by the Trust such as Grandma’s
china and silver, tools, etc. will, on the death of the last parent be owned by the Trust. Then when the
last parent passes away, the inheriting Trustees have to decide how to divvy up everything. Beware!
This could be a fatal difficulty among you and your siblings if you have not talked out who gets what in advance!
Major family splits have occurred over who gets the candy dish.
that is subject to Probate. This is what you normally think of as a Will. It
is made when there is no Trust. In it, the elder makes directions on how their assets will be distributed
when they leave this mortal coil. However iron-clad you may think this will is, when the last parent “leaves
town,” siblings have a history of turning into 3-year olds and contesting the will for their own benefit in every way
that can be thought of! And your county or state may require Probate that can actually freeze distribution
of the estate for a year or so until they make their legal decisions and collect the taxes. This means
that the elder’s funeral and other arrangements would need to be paid out of the inheritors’ pockets for the time
o Shared Ownership. This
is an option especially if your elder does not own very much and there is only one offspring, or there are not many siblings.
This shared ownership can be used for major items such as house, car, bank accounts, etc. in tandem with a good Will.
That means that the inheritor’s name goes on the deed to the house, the title to the car, and becomes a co-signer
on all bank accounts, safety deposit box, etc. The inheritor kindly stays out of the elder’s business
until the elder needs help or passes away. Then there are no restrictions to being able to wisely help
o Funeral Arragements. The
sooner you get your elder’s wishes on their own funeral arrangements written up, and start contracting for them—“pre-planning”
with the funeral home, cemetery, etc., the more economical those services will be. It seems as though those
prices are constantly going up, so can capture the current rate and pay over time. And relying on your
parents’ fairly detailed funeral plans eliminates a lot of squabbling among siblings at the most difficult time.
Also know your parents’ pension income, social security, and other income, as well as life and
health insurance. Know where it all comes from and how to get in touch with the payer when need be.
Now this is so important. Give some thought to how the caregiver may or may not be
supported while they are working full time or part time for their elder in their time of need. Will they
be supported out of the parents’ funds, will the parent’s funds not support the caregiver, etc.? But
be sure that the caregiver doesn’t bleed the parents’ resources dry. And be most sure that
any insecure offspring—including yourself are not milking the parents’ cookie jar along the way. Very
another huge responsibility! Of course, do be sure that your folks have adequate health care insurance.
If they live in the USA, are they are on Medicare which kicks in at age 65. Have they registered
with Medicare, do they have both Parts A & B to cover both doctors’ visits and hospital care,
and do they have a private insurer Medical Supplement Plan F to cover things that Medicare only makes partial payments on?
Know what Medicare won’t pay for, and consequently the supplemental insurer will not pay anything on those things
either. And Plan D supposedly pays for medications at home—not in the hospital, but is usually very
inadequate. These things just mentioned are all regulated by the US government. Be sure
to study this fairly complicated system to be forewarned.
In this day of “efficient”
medical care in which health insurance companies only give a doctor 10 or 15 minutes to see a patient, this can create a really
big problem when you have a patient who may be slow in their thinking and/or memory, and have a large array of medical challenges!
To that end, I very strongly suggest that you create a “short” medical history
on your computer and keep it up to date—to the minute. To learn how to do that, please go to www.SoulAnswer.com/health_chart.html .
Please don’t be daunted by this task, but just print out these directions
and study them. Then make up and keep up this precious document. Start when your elder
still does not have a ton of challenging conditions yet. Have at least one paper document of this record
at the ready, where everyone knows its whereabouts to give to the emergency room doctor, and more up to date paper records
to take to the regularly scheduled doctor appointments.
If you have this, the
doctor can get a full picture of your person in under 5 minutes so that he/she has full background information that is easily
accessed when trying to give the best diagnosis to your person. It really makes all the difference to getting
appropriate and safe care. You can do this for yourself as well.
doctors and other medical people can be a real challenge as well. There are suggestions on how to do this also at www.SoulAnswer.com/health_chart.hmtl .
Now, when I was with my parents, I always kept a canvas bag packed for each one that had a 3-ring
binder that housed their medical history, medical reports (MRIs, CT scans, blood work, etc.) as described on that web page.
There were also packaged snacks and drinks for both of us in case we had to wait a long time, and extra of their usual
medications in case we were not at home at the time those meds needed to be taken. I grabbed that bag when
we went to the emergency room, to the doctor, or even went to the mall. Those were uncertain days.
BEING THE LEADER
This is a biggee! Being
under such pressure— trying to do the best thing for your elder when they are failing; trying to keep your own life
and your spouse and children’s lives together; staying in charge of both your and their finances and other needs; dealing
with your elder’s idiosyncrasies and demands; dealing with your siblings, in-laws, your other parent and other relevant
family members; keeping your own fears and insecurities in-check and healed while doing your best to keep everything running
well and smoothly under such trying circumstances is a gargantuan undertaking!
LOVE yourself as well as others. Do not break yourself under the weight. This is certainly
the time to depend on a very strong sadhana to maintain your own strength, steady decision making, even-headedness, balance,
humility and personal power. Yikes! And find some ways to give yourself some time off
to regain your balance—this is called “respite care.”
Have some fun and celebration
with your family! Really develop your sense of humor and humility. Even morbid humor
can work wonders to ease the tension. Do what you can to relieve the tedium and heaviness.
Be really creative. Find your center, your sense of ease, centeredness and wisdom that comes when in Shuniya/neutrality/being
fully present by accepting everything but not getting taken over by anything—listening closely to the “Voice Within”
that has perfect direction for you, even though the answers seem to not make sense to your mind in the moment.
Use Heart Breath www.SoulAnswer.com/heart_breath.html and your favorite mantras, meditations and kriyas to move you into this powerful “Soul Space.”
www.SoulAnswer.com/kriyas.html . When you get confused or discombobulated, send your body’s whole energy down into the very center
of Mother Earth. Feel Her there and listen to Her. That very real, truly experiential
grounding will certainly calm you to anchor in your Center where you will find strength. It will seem miraculous!
Now be sure to maintain your place of neutral, rooted Center. Please be sure
that you don’t get pushy out of your own fear and insecurity. Often we get so uptight about doing
the best thing, we become like a bull in a china shop and start ordering everyone around. Know that it
is so very important that everyone listen to EVERYONE. This can be a tall order all around, especially
if mutual respect has not been a big part of your family’s life. So, use Heart Breath to change your
energy and to nurture that of everyone to connect heart to heart in some way. Be humble to everyone’s
expression, and gently lead all parties to listening in order to come up with the best plan that is made from pieces of everyone’s
suggestions. Continue to creatively develop the plan until everyone is satisfied. And
if the group can’t come to any unified position, please call in a therapist or mediator to referee and work things through.
Remember that not everyone has the capacity to be a support to the elders and/or the caregivers all the time.
So, forgive and move on.
Remember that you and your siblings are hopefully transforming from
being grown children to becoming kind guardians of your parents—no matter how they treated you when you were little.
And you may be losing the most important loved one in your life, or helplessly watching them go through unbearable
decline and pain—breaking your heart.
Understand that this whole challenge will bring up every
fear and non-processed bit of your whole childhood, sibling rivalry and family life for yourself and every one of your family
members! It is a time for restraint, humble listening, unified problem solving, developing deep love, forgiveness
and healing, and all acting selflessly for the very best care for your elders. You will have to discern
your boundaries so that you don’t get crushed under the burdens, but balance that with what you can give, and be in
your own appropriate power—not hiding but being fully present. Seek help from professionals and local
health department services as needed. Don’t be shy. Everything will be quite new
to you, but explore all avenues anyway.
You may see yourself as a center of this humble, supportive,
directive energy, but not as the tyrant! That can trample every good intention that you may have and make
a real mess. On the other hand, do show up. Don’t run away at important times
because your knees are shaking so much. Do Heart Breath and do your best to be present, even if you are
fainting with the latest news from the doctor or accountant.
Accept this whole situation as a most
important time for your own growth in compassion, balance and steadiness for you and others. Give all challenges
to God/Guru/Soul and all of our great Guides such as Guru Ram Das. They truly know how to carry you through,
one step at a time. And do your best to actually be grateful for this huge challenge. If
you work and heal to your best ability with what is thrown at you, you will become a deeper, stronger and wiser traveler along
the spiritual path! Guaranteed. Nothing is a fluke or a misfortune. All
Lots of Love,
Copyright Siri-Gian Kaur Khalsa, www.SoulAnswer.com/elder_care.html , 2013.
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