CAREGIVER DISCUSSION PRESENTATION
David J Levy, JD
Good Morning! I want to thank you for letting me share
some of your Sunday morning on a subject that involves all of you in one form or
another – Family Caregiving.
I am going to split my talk into three parts. A general
discussion on the some of the issues that every caregiver asks about and give
you some valuable tips and coping skills that everyone can use to understand and
deal with those issues. The second part involves a question that many of you
have specifically raised regarding caregivers involved with Dysautonomia and
intimacy issues (you are a young group, in your sexual prime and this illness
manifests itself in ways that interferes with that intimacy) and then a short
period for questions. This is not going to be a clinical discussion, but a
layman’s conversation on practical issues. I will also reveal that, I too am
an active caregiver, and run the largest company focused on advice and support
for family caregivers.
What is Family Caregiving and how did most of you get to
be Family Caregivers? Simply put, a family caregiver is an unpaid family member
who is responsible for some or all of the physical, social, emotional, medical,
psychological and logistical needs of another. This is not childrearing, but
some of you may have the dual role of parent and caregiver to a child with
chronic issues. Most of you got to be a family caregiver by default, meaning
there was only one choice and it was you.
After nearly ten years of concentrated focus on Family
Caregivers, I can tell you that virtually no one will escape the role.
Caregiving is a facet of life; one that we all face – whether for a parent,
spouse, chronically ill child, family member, good friend, in-laws, ex’es -
well, you get the idea. It is not a question of “if” you will be a caregiver
- simply “when” and how often.
An important thing to remember is that caregivers are not
martyrs or saints, they shouldn’t view themselves as such, and they
shouldn’t have others characterize them that way. While the caregiver role can
be difficult, and there is a lot of self-sacrifice associated with caregiving,
there are millions of caregivers and the numbers grow daily, and none of us will
be recognized as the Mother Teresa of family caregivers.
Caregiving carries universal characteristics. Caregiving
for a parent is not too very different from caregiving for a spouse. Rest
assured, that each relationship carries with it a whole bundle of distinct
emotional, physical, social and family circumstances, but the common issues run
the same.
Caregivers feel that they are transparent – that
everyone is focused on the care receiver, but never recognize the effort being
put forth by the caregiver.
Caregivers feel lonely – that they are in this
by themselves and that no one understands what they are going through.
Caregivers feel frustrated – they are being
forced into a role and responsibilities that they have no training or background
in.
Most often heard is, “…Why is caregiving so hard?
…What am I supposed to do?
Why it is hard is a lot easier to answer than what am I
supposed to do.
Why is it so hard - because family caregiving is
long term. It is not the “chicken soup and a magazine you’ll feel better in
a week type of scenario ”. You’re involved in chronic caregiving, the kind
that typically lasts 4-8 years and, many times, longer.
Why is it so hard - because family caregiving
involves the mundane and repetitive, the day-to-day, psychological/social
issues, the logistics, economics, including the coordinating of family, self and
others.
Why is it so hard – because it is not intuitive.
Your maternal/paternal instincts and childrearing experience is not substitute
training for what family caregivers must deal with.
Why is it so hard - because we do not have a
“caregiver gene” in our DNA that blossoms forth when we are confronted with
these issues.
Why is it so hard - Ask yourself, “what training
have I had in family caregiving for a chronic illness?” Probably none, and I
am not talking just medical.
Therefore, if family caregiving is long, boring, not
intuitive, not genetic or learned, why should it come as a surprise that it is
difficult, complex, confusing, frustrating and not what we expected or planned
for in our relationships.
What am I supposed to do - There are no “magic
bullets” for slaying the beast called family caregiving. But there are things
that caregivers can do to help themselves and the family dynamic involved in
their caregiving. First and most important is what I call expectation
management.
Why do you need to practice Expectation
Management? – Have you really confronted yourself and said, “What do I
know about the circumstances I am involved in?” Sounds easy, but what do you
really know about the illness your loved ones suffers from. Lets be practical,
if the medical profession is having a hard time quantifying Dysautonomia, why
should you and your family feel surprised that you don’t understand those
issues real well either.
Why do you need to practice Expectation
Management? - Have you really ever sat down and said to yourself, “What if
this illness lasts 1 or 2 years or longer - what is the practical impact on my
family, on me, on the person being cared for”. That impact is far reaching
encompassing financial, social, emotional, and many times intimacy issues and
affecting family, business, and community relationships to name a few.
Why do you need to practice Expectation
Management? - Very few of you would start out on an extended road trip, to a
location that you have never been before, without preparing yourself for the
journey. What roads might I travel? What is the weather that time of year? Where
should we stay? What are the costs? And on and on. This way you have begun to
anticipate the practical issues of your trip and you can plan, budget and
prepare for it. Being a family caregiver is not much different. If you are
unprepared, if you have not considered some of the practical issues you and you
family are faced with, you are destined to have a bad trip. Not that preparation
makes the illness better, but it makes the management better and you know what
you can expect and what you may have to be prepared to do. Just as important is
expectation management for other family members not part of the immediate
family; employers, and friends. These are essential and critical elements in
your coping strategy.
Why do you need to practice Expectation
Management? - Just like on that road trip, there are always practical
problems that come up along the way. A bad rainstorm washes out the bridge and
you have to detour. The important business trip you were going to take has to be
postponed, because your spouses illness has flared up and that affects the kids
and school, carpool and soccer, etc, etc.
Why do you need to practice Expectation
Management? - Having a game plan, understanding the issues, creating
realistic expectations, timetables and outcomes can greatly enhance the quality
of life for you the caregiver and for everyone else involved. Especially
children. They sense problems just as adults do, but they don’t wear the same
social façade. Children are part of the day-to-day interaction for many of you
and they need to have their expectations managed-as well. I don’t say they
have to be beaten over the head with all of the details, but they need to
understand why mom or dad can’t do what the other parents are doing, or as
often, or as well, or at all. You also need to reinforce the things that the
affected parent can do so that self-esteem on both parts is maintained.
Following up on the issue of self-esteem, I
mentioned quality of life a moment ago. One of the universal
characteristics between a family caregiver, the receiver of care and the
involved family is what I call the “three legged stool” syndrome. One leg is
called dignity; one leg independence and one leg quality-of-life.
When one leg weakens or collapses, the whole stool goes with it.
If one loses one’s independence – being in jail, or
by chronic illness - one loses one’s quality of life. Lose your quality of
life – living on the street or never feeling good - you begin to lose your
dignity. It is a vicious circle and affects all of us.
Dignity, independence and quality of life, are
internal perceptions – no one can give them to you - you must feel you have
them. These perceptions are also in the “eyes of the beholder”. To someone
who is fully mobile, a wheelchair is a loss of independence, to one who is bed
bound it is freedom and independence. Caregivers can feel as trapped as the care
receiver - their independence, dignity and quality of life are just as
susceptible. Everyone is caught up in the problem, everyone needs to be part of
the solution and help support it.
The Impact of Caregiving - One of the essentials
of dealing with chronic illness and caregiving is to recognize that whatever was
going on in your life before the illness occurred is still occurring. If you
didn’t like your parents before they got old, and you have to take care of
them, taking care of them is that much tougher. If your marriage had issues
before you got sick, resolving those issues just got tougher because another
layer to the relationship has been added.
Unfortunately, if the relationship was great, getting
sick didn’t make it greater. If two people had the magic ingredients to make
the perfect relationship (I call it the “perfect cake”) well now that cake
has to try and bake in an oven that won’t heat properly. Is the perfect cake
destined to be ok, a soggy mess or a burnt offering?
Please understand that I am not dwelling in the negative.
I am not saying that all of the major issues between people confronted with
chronic health issues cannot be resolved in time, but it takes time, a sincere
commitment to making it happen and a real world recognition that it might not
happen as you planned it, or happen at all.
On that note, let me shift gears and discuss what you can
do to try and make the caregiver role in a chronic illness relationship work.
What can you do to feel that you have accomplished something for yourself, your
loved one and the family? Here are some suggestions that have worked for others:
Establish
and re-establish trust in the relationship. With Dysautonomia this can
sometimes be one of the most difficult things to do, because the disease has so
many manifestations and presents in so many different ways. We all know that
Dysautonomia is also known as the ‘invisible” disease and that leads to
unique problem.
It
leads to mistrust on the part of the caregiver. “Am I being manipulated –she
doesn’t look that sick”, or “Why can’t he take car pool or go shopping
– he’s just laying around?” Not just spouses, but in-laws, neighbors and
others say, “Well, they don’t look that ill to me, I think they are being a
lazy bum.”
Confidence in the
relationship is critical between spouses dealing with a chronic illness. The
relationship is constantly going to be tested. When confidence in the
relationship is not in place, it can lead to paranoia, false hopes, misplaced
expectations, worry, and a “grinding away” of the core relationship.
Everyone needs reassurance. You and your spouse, or significant other must
continually reaffirm to each other that you believe in each other and in the
relationship.
Maintaining individuality
is one very important factor. We have been talking about ways for spouses and
the family to work together. In this context, when I say spouses, I also mean
significant others, as well as individuals that form the core of the care
relationship. It essential that you each develop ways of maintaining your
individuality and sense of self. I am not trying to get into psychological
concepts, but this all ties back into independence. What do I mean by this?
When families are
confronted with chronic illness, the illness tends to be the center of the
universe. Everything happens in association with the illness, and so many things
take on an illness-related aspect. For example, life tends to revolve around
medicine taking, doctor appointments, and how the person “feels” at any
given time.
You must find other
activities that you; your spouse and the family can individually focus on to
break the “care cycle”. At the same time, you need to also find mutual
activities that you all can be a part of so that the family maintains its
semblance of normalcy.
Individual time and
activities - It is very important for the caregiver to have his or her
personal time and activities without feeling guilty because the other person
can’t go and do that. Part of the trust we talked about a moment ago is
letting each party have their space, expressions of self and self-fulfillment.
This can take many forms and shapes and each of you must determine what that
means inside of your relationship. Caregivers have to be careful not to become
intimidated and smothered in the illness. Care recipients have to be careful not
to play their illness for attention, pity, and manipulation.
Just as important for the
care receiver is to have activities that identify with their need for self. They
may be sick and have limited mobility, but they can develop hobbies, use the
internet, go to the movies, meet some friends for coffee. As I said, this is
unique for each person, but the overlying theme is that you must consciously
work at keeping your independence and respecting the independence of those
around you. These are the elements normally found in a successful family
dynamic and they must be nurtured and supported when that dynamic is disrupted
with chronic illness.
Where do you go from here?
As caregivers in the world of Dysautonomia you should feel very encouraged that
a lot of recognition for the illness and all those affected by it is being
promoted daily by the National Dysautonomia Research Foundation. To have gotten
this many health care providers together for a CME session on this subject is
remarkable. To see the total turnout for this first NDRF Seminar is terrific.
Linda and Dan Smith are to be congratulated for the job they have done in
bringing Dysautonomia to the forefront. You are to be commended for being
pioneers in this effort as well.
The NDRF is committed to
its cause and those affected by it. They have a great deal of respect and
admiration for the caregivers. They recognize this is a young persons illness,
and they have pledged, along with the Board and me, to bringing the caregiver
the active recognition, support, advice and services they need.
In the coming months there
will be special features on the website, active support chat capability and
highly focused articles that deal specifically with your caregiver issues. This
talk today is just the tip of the iceberg for what they have in store.
Now to the issue of
caregivers, care receivers and intimacy. A delicate subject, one that
underlies “normal” healthy
relationships and one that is greatly imposed upon by Dysautonomia.
First, there are no
mysteries here. We are talking about the big three
-love, intimacy, and sex. There is a big difference between them.
1.
You can love someone and never be intimate or sexual with him or her.
2.
You can have sex and never have intimacy with, or love for, the other
person.
3.
You can love someone and have great intimacy without having physical
sex.
Hopefully, you all love
your spouse or significant other. If you don’t, those are not issues that we
can or would address here. That’s a fundamental building block of a long-term
relationship and you need to work on that with professional help.
Sex, in the physical sense,
is the subject of more movies, books, aids, suggestions, myths and stereotypes
and is not what we are talking about either. However, the subject of sex is at
the core of many of the issues young couples dealing with chronic illness face.
By young couples, I mean if you are young enough that you can still appreciate
sex you qualify. Hopefully, in my case, it keeps on going into my eighties.
Seriously, Dysautonomia
manifests in so many ways, that when you feel lousy, you really don’t feel
very sexy and if you don’t feel sexy, its tough to give off the vibrations and
look like sex is on your immediate agenda. Having a low libido is also a problem
with many people who suffer with Dysautonomia and their caregivers.
If you remember earlier we
talked about individual space and mutual space, well intimacy takes place in
shared space. What is intimacy?
Intimacy is that wonderful
thing that occurs when two human beings, alone, private and relaxed enjoy from
touching, embracing, stroking and kissing each other. It’s the wonderful high
you get from the release of endorphins this intimacy stimulates. It is the
opportunity to forget some of the immediate worries of illness and life. It’s
a time of renewal
Intimacy is not sex, but it
can be part of it. Intimacy is love and should be part of it.
Now many of you have not had an active sex life or
a very intimate one in a while. Why? Is it
1.
Due to the illness?
2.
Due to the relationship?
3.
Due to a blind acceptance of the “same old same old” and the anger of
not doing anything about it?
These are questions you and your mate must try and
resolve
1.
Are you afraid to talk about sex?
2.
Are you afraid of appearing greedy, needy, crass or demanding?
3.
Are you afraid of being misunderstood?
4.
Are you afraid of hurting her, making him/her feel worse than they
already do, afraid to let them know how much you miss them?
5.
Are you feeling like a failure?
§
Are you two simply “stuck in a rut” and haven’t discovered
how to move out?
§
Does one or both of you really have organic problems related to
sex and intimacy that only the medical profession can deal with?
6.
Is the relationship floundering for all the good excuses everyone has –
money, success, children, etc.?
7.
Have the two of you decided that there is nothing left in your
relationship to retrieve and your staying together because your spouse is sick,
and/or for the sake of the kids?
You
and your loved one have got to communicate what you are feeling – anger,
frustration, depression - over the illness, over how you think you are being
treated, over what this is doing to your sex life, over whether you still like
one another.
Understand, that intimacy is as close as closing your
door and saying to one and other this is time that we need for each other. When
is the last time the two of you said, “we
need some time for us?”
In practicing intimacy you get back to the fundamentals
that attract humans to one and other, and why the two of you probably came
together in the first place. It is a wonderful starting place for the rebirth of
your relationship. Being near, being intimate, sharing that space is one of the
most nurturing events in a relationship. Caregivers and their care receivers are
no different than everyone else and maybe even more deserving because of what
you are going through.
Intimacy can be planned or
it can be spontaneous, the secret is not to rebuff it with the same
old excuses. (
Wrong time, kids, headache, etc. are really physical sex excuses)
In time, with some regular intimacy, you may discover that the libido “wakes
up”, that some days, once in a while your spouse feels sexy, that reserving
that special time for the two of you has added back a dimension in your
relationship and your life that you thought had gone by the wayside.
Remember, the problem didn’t occur in a day and it
won’t go away in a day.
The key to everything we have discussed this morning is
constantly working for openness, honesty, candor, respect and appreciation for
each other.
A parting thought, you have permission as caregivers to
confront the problems that the role has brought you and are entitled to discuss
them. Both between yourselves and in the presence of professional help, if you
feel the topics are too sensitive to raise on your own.
One practical tip that I have learned, if you can’t say
it – write it. A sincere letter setting forth your feelings and frustrations
lets you begin the communication process without making it confrontational. It
also lets you organize your thoughts and see what you really want to say.
Many people have resolved intimacy and sexual issues by
starting the ball rolling literally as pen pals. A sexy letter about how you
feel can sometimes be an incredible icebreaker and a turn on. Try not to post it
as work-based e-mail however.
Thank you all for being here and being so attentive as
listeners. I hope I have raised your awareness of a few things about being a
caregiver and about you – the individual.
We have a few minutes does anyone have a question?
Mr. Levy is well known
as a speaker and writer on family caregivers and eldercare matters. He was the
spokesperson for Fortis Long Term Care Insurance on these subjects. He
co-created the first masters degree Program in Geriatric Care Management, Lynn
University, Boca Raton. He Chairs and is President of the S. Florida Chapter of
the Parkinson’s Disease Association; Founder, Chair and President of the
American Association for Caregiver Education; Founding Director of the Florida
Ear Foundation; and Board Member, National Dysautonomia Research Foundation. Mr.
Levy holds a Juris Doctor from Brooklyn Law School and is President/COO of
Family Caring, Inc. d/b/a Boomerang, Deerfield Beach, Florida. | 
