Chronic Illness -
Meniere's Disease and The Family: Understanding It
And Offering Some Support
One of the most rewarding careers in
nursing has to be the job of the home support care team. It comes under
many different names and formations, but basically it is a group of
health care workers assigned to visit sick people in their own homes.
The reason can vary from someone not ill or infirm enough to be placed
into a care facility, or someone newly diagnosed with a chronic
illness, or someone just out of hospital to save facility costs, new
baby, etc. The end result is that some form of nursing care has to be
provided to this person. There are several benefits to providing the
care in their homes.
The best one is that the nurse sees the "whole person". This makes
assessment and teaching much easier. Nurses are trained to adapt their
teaching TO the client: not to textbook care.
Here we see real life in action. And that is life surrounded by
immediate and extended family members.
In a hospital setting, the client /patient will be in a very
controlled / abnormal atmosphere…an almost sterile situation…johnny
shirt with back flopping open, little or no privacy, dignity left at the
hospital doors, family members are "visitors" and not always welcome
(although this is changing.) The medical team is in control, the patient
is seen as co-operative or difficult.
Things are done TO them, not with
them. And I might add…at unusual times. Normal lifestyles are suspended:
conformity is the expected. This is not a normal, but necessary
environment. So it's desirable to have the patient return home as soon
At home, things will be more relaxed. The focus will be on
integrating both their physical and emotional needs into their normal
lifestyle. Here the "tables are turned" and control is back with the
client, who may or may not want to do as the nurse advises: that is
their choice. Care is always adjusted to create an atmosphere of
understanding and co-operation. Sometimes this can be a real challenge.
However, nurses are taught to be very observant and creative in ways
that allow the client to resume a more healthy way to live.
When someone at home has a chronic condition that requires periodic
nursing care, there are several issues involved. This may or may not
include other members of the family, including children, plus the
results of the actual illness. These can easily include the actual
disability, anxiety about finances or job loss, family responsibility,
motivation…or lack of, depression, possible drug interactions or
Some drug side effects may also result in paranoia. (Please consult
with your pharmacist if you have the slightest concern.)
These not only influence the client, but also the caregiver and the
children. Someone always ends up becoming the main caregiver: not by
choice, but by default. So while the routine "life must go on" exists,
life is never the same. Routines, which ensure stability and confidence,
are changed and stress becomes a very real factor. Everyone's roles in
the family dynamic are changed and the ripple effect is very upsetting.
Most people don't know how to accept change easily, and this creates a
Everyone is on edge and feelings are raw. While the client has to go
through the actual illness, and tries to find ways to cope with these
problems, the rest of the family becomes frustrated and angry. In many
cases, the client expects the other to accept the mood swings as normal
and a right, which I think is unreasonable.
The term chronic implies something for a long time or without any
letup of demands There may be little hope for improvement and that in
itself requires some strong outside support. Often there is little
sharing of the care load…for a number of reasons. People often avoid
sick people: consequently there are few volunteers to help.
also additional workload from all the previous responsibilities, so
fear, anxiety, and anger are present, but often hidden. This is a very
difficult time of adjustment for the caregiver. And the rest of the
family. Few of us are equipped to handle more than our own chosen load,
let alone assume another's responsibilities, and then be cheerful and
tolerant. The one person who APPEARS to be strong and caring will assume
One of the most common situations arises in the elderly couple where
one has the start of Dementia. The spouse may or may not seek help. If
they do, the rest of the family often denies the problem: they refuse to
consider the possibility. This caregiver then has an additional guilt
load. They will subsequently isolate themselves even more. Often the sad
end to this is the death of the caregiver from their own medical
A major problem that I come across is guilt felt by the caregiver.
When we discuss this, they are often very surprised that this is normal
and shared by many others. That in itself, is often a huge de-stressor.
Just being able to speak about their fears and perceived shortcomings,
and abandoned hope for a more productive future, gives the caregiver
some peace of mind. (There are organizations for caregivers by
caregivers and your community groups will know how to contact them.) By
opening up, they can learn different coping skills. It is important to
remember that the caregiver also has rights: not just a lot of
It is normal to have feelings of frustration and total tiredness.
Frequently, mealtimes and routines have had to be adjusted and often
neglected. Rest for everyone is important.
Here are some suggestions that have worked. They won't all do in all
situations, but they should start the thinking process. It is very
important for caregivers to know they are not alone in their situation:
that others have done it successfully and lived through the challenging
times. Often just getting a few of them together or putting them in
touch with each other, …with their permission, is enough to give them
back control and their self worth.
- The caregiver is NOT A SLAVE. They are a real human being who out
of their generous heart, is caring for the client. It must be
remembered also that they have feelings and a need for respect,
nourishment, rest, etc.
- It is important that some g round rules be established such as
frequency, types, and times for care, and batching of activities. The
client NEEDS to maintain some sort of independence, so they need to be
encouraged to do some thing for themselves.
- Some sort of agreement as to how requests are made ids crucial.
Respect and politeness are still in order. I discourage bells except
for specific needs…not for general purposes. Pavlov trained his dogs
with it: we can create a lot of stress the same way.
- Issues related to meals and nourishments reasonable and medical
care and expectations, privacy and entertainment activities, for both
the client and the caregiver need to be taken into consideration.
Additional help may be needed at times.
- Often the client is in no shape for long lectures or
dissertations, but some form of agreement must be established.
It also has to be remembered that in many cases, children continue to
need care despite one parent maybe needing special care. So the burden
is heavy and difficult. There needs to be discussion with a group of
support health and social service personnel that listen to both the
caregiver and the client, and give appropriate suggestions.
In fact this
discussion should be ongoing and start soon after recognizing that there
are problems. One of the more common, but unhealthy behaviors is the
mood swings that the client goes through, and the rest of the family is
expected to accept this without question. Some types of behavior are
unacceptable, no matter what the cause. Everyone must be treated with
normal politeness and respect.
Another very important issue that has to dealt with is "time off" for
the caregiver. And that is the responsibility of the family as a whole.
No one should be expected to work 24 hours a day without adequate
breaks. If another family member can't fill in, there are community
facilities that might be able to find volunteers to sit with the client.
Some of the clients try to manipulate and control the caregiver in a
couple of ways, because they seem themselves loosing control over their
own lives. Two ways to achieve that is to threaten to "take them out of
the will" or to report them the health or social service authorities
about the perceived neglect.
If this is the case or a possibility, the best thing to do is to
contact the nursing team. They need to know this and can help. It is
also handy to keep a journal of activities. It doesn't have to be formal
or elaborate: just notations. It will give anyone who id questioned, a
very clear understanding of the daily events. In fact, journaling is
Care for the caregiver should include calls and visits to friends and
rest periods. This creates a much more relaxed and accepting atmosphere.
Ongoing support by the visiting health team, the doctors, and
pharmacist, is vital for the wellbeing of everyone.
Unfortunately, people get sick and some for a long time. It is
important to remember that no one…client, caregiver, family, or support
team wished for this situation. Communication with the outside world and
living as normal a life as possible, with open discussion and fair
treatment, is crucial. Probably one of the nicest and most appreciated
surprises a caregiver could receive is the gift of rest and time to be
We also have another article on the website that you may
be interested in;
Coping With Meniere's
Disease as a Family
By Karin Henderson - Nurse, Retired.
If you would like to know more about the system we talk about throughout the
use this link to go to the Meniere's System Information page.
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