Our
tradition obligates us to care for our parents until the end of life –
personally, if possible, yet if not, then to employ caregivers for their
assistance. The assumption is that the issue of providing appropriate care is
now resolved. However, as someone who has been involved as a mental heath
therapist, care advocate, and sometimes a relative with individuals and
families approaching elder care both at home and in facilities, I can say that
this is when the real watchdog effort needs to take place.
Care
Delivery
Who
gets to define what kind of care is appropriate for each person and who gets to
deliver it? If the person is receiving home care, usually, a prescription for
medical needs has been written by the hospital, rehab facility, or doctor. A
home health care agency may be hired to send a companion or nursing assistant
to carry out assigned tasks. Ultimately, the family or a hired care manager
must supervise this. You are looking for coordination between requisite medical
tasks and the social-emotional well being of the patient. While the infirm
individual is adjusting to being at home with limited abilities, she and the
caregiving aide need to develop a cordial relationship. Good will, listening,
and compassion are essential. Sometimes the chemistry is right for this,
sometimes not. It is a delicate dance to figure out how the patient is actually
feeling, which he or she may express verbally or, more likely, only in their
observable behavior, and whether the aide approaching them is being sensitive
to changing moods. For children who have not been decision makers for their
parents previously, this can be awkward. While we always want to respect our
parents’ preferences, sometimes we see areas that need change despite the
parent’s denial.
Decision
Making
The
time to have this discussion about how decisions will get made in the parents’
ongoing care is now. In the most cooperative of families, when caregiving
decisions are on the table, vulnerabilities are exposed. How much more so for
families that have wrestled with conflict for years. Accusations of abuse,
neglect, critical judgment, and favoritism may stand as a buffer to truly
advocating for the best interest of the parent. In an ideal world, it would be
wonderful if divided children and parents could work through some resolution of
their issues before end of life, possibly with the help of a therapist,
mediator, or rabbi. If this does not seem possible, it would save much more
angst down the road if children and parents with resentments would admit they
are not up to the task of planning and monitoring caregiving and would agree to
hire a reliable person before the critical need arises. Tragically, I have been
to funerals in our community where it was not even mentioned that the deceased
had children.
For
those families who are working together to ensure adequate caregiving, they can
help by arranging the home environment in a way that is safe for the elderly
parent to navigate, with sufficient light and any improvements that make tasks
easier and facilitate as much independent movement as possible. It is still a
home, so it does not need to resemble a hospital room or a cluttered basement.
If
a family member cannot be present during the day, then it is advisable to have
a friend regularly drop in unannounced to see how things are proceeding.
Particularly if the family lives out of town, the elder may not want to bother
them with her complaints, so the children would be in the dark about how she is
faring. You do not want feedback to come solely from the aide or home care
agency director.
Assisted
Living
If
the decision is made to put the parent in a facility, unless the person is very
incapacitated, the choice would be an assisted living. Meal preparation,
housekeeping, and medication management are basic services here. For dressing,
bathing, toileting, there are usually added costs. But the main goal of an
assisted living is – or
should be – sustaining
the quality of life. Otherwise, it is just warehousing people. Thus, assisted
living sites usually have one or more employees assigned to the role of programming
or leading activities. I have worked in sites where this person had a master’s
degree in therapeutic recreation. At other places, that person had taken a
certifying course at a community college, and at some places, the person was
leading activities by the seat of their pants. Residents know the difference.
Their outlook and sense of well being depends largely on the daily fare that is
presented to them for engagement.
One
size does not fit all; in fact, it rarely fits one. Each resident has his or her
own needs, desires, preferences, dislikes, and triggers. The astute activities
director takes the time and insight to discern what best interests and uplifts
each resident. If approached on the correct level, there is no one who cannot
be engaged with. I have worked with persons literally at the end of life who
still responded to music and touch.
Memory
Care
Many
places say they offer “memory care.” What is the philosophy behind this? Just
keeping people safe is not enough. Teepa Snow, OT, has designed a program
called GEMS. While it describes levels of cognitive decline, it offers positive
ways to engage with persons at each stage. For example, a person who is an “emerald”
may not be aware of safety concerns and has a hard time recalling details. Yet
that same person is very attuned to body language and tone of voice. If an aide
approaches them in a brusque manner to dispense medication or help with
toileting, this resident may become agitated. The facility may react by wanting
to separate this person or even demand that they be given a tranquilizer. (Actually, the Centers for Medicaid and
Medicare stipulate that patients not be given psychotropic medications until
other non-medical means of impacting mood and behavior are first tried.) Yet
the correct approach by staff could have turned this into a positive
interaction. Similarly, if a person is in further decline as a “ruby,” they can
be best approached through the senses – aromatherapy
smells, touching different textures, light massage. These let them know they
are worthy of attention and can enhance comfort.
Appropriate
activities and caregiving interventions allow the person to feel respected,
cared for, and purposeful, which absolutely impacts their mood and behavior. This
is the payoff as they are also often more cooperative with staff. Thus, if you
walk into an assisted living site and see people just sitting or slumping in
their wheel chair or sleeping through the day, you have every right to ask if
the medication regimen is accurate and what activities are being done for
cognitive, emotional, and physical stimulation.
Nursing
Home
Nursing
homes will have less robust activities. Yet the issue there is to monitor
nurses and other staff who interact with mostly bed-bound persons. An aide who
serves lunch with a smile and a light touch on the shoulder can impact a
patient’s mood more than the doctor who comes in to read the chart and
prescribe medications. It is up to family members to gauge their parent’s
response to nursing home protocol and to advocate for them. If you see your
parent becoming despondent or more anxious, it may be because they are feeling
unsafe and their needs are misunderstood. It is totally within your rights to
speak up, first to the staff, then to the administration, then to file a
complaint with the state Office of Heath Care Quality.
So, as family members who strive to ensure
adequate, conscientious caregiving, you can observe, ask questions, get
accurate feedback, and create an open dialogue with management. Know that
whatever your parent’s level of functioning, he or she des
