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Family caregivers spend 20-40 hours a week caring
for a family member, over an average period of 4 to 5 years (Crisst, 2005). If paid home care staff were to work these hours
the estimated cost of caregiving would be between $45 and $94 billion a year!
The odds of becoming
a caregiver are increasing. Adult children are providing more care and more difficult care to more parents over much longer
periods of time than ever before in United States history. - For
the first time in US history, the average American couple has more parents living (more than two) than children (less than
two).
- American women spend more years caring for parents (18) than for children (17)
and 25% of women caregivers are caring for both their parents and their children; these caregivers make up what is called
the sandwich generation.
- On any given day, 12 million Americans are providing
some kind of home care for an elderly parent or relative.
The Rewards of CaregivingCaregivers usually feel a responsibility and obligation to help
an older family member and find many joys and rewards from caregiving. Spouses often feel that caregiving is part of the responsibility
they accepted when they were married; it is an expression of love that is treasured by the care recipient. Husbands in particular
may feel a need to express gratitude to their wives for their support and devotion to the home and family in the earlier years
of the marriage. Couples can be drawn closer together through the expression of love, and the fulfillment
of their commitment to care for their partner "in sickness and in health." Caregivers who master new tasks feel
an increased sense of confidence and self-worth. For example, men may learn to cook and women may learn to make home repairs.
Adult children who are caregivers usually help their parents willingly and feel satisfaction
and a sense of accomplishment. Children may develop a closer relationship with their parents while sharing time and providing
care; they may even be relieved to resolve old conflicts. Parents may express more appreciation of their adult children than
they have in the past. Children may strengthen their relationships with brothers or sisters who are helping. Clearly there are many positive aspects of caregiving. A key for both the caregiver and the recipient of care seems
to be a positive family relationship. Feelings of closeness and love, sharing humor and fun, and the pleasure of knowing someone
well all seem to make receiving and giving care easier. Keeping these positive things in mind also seems to ease the strains
of caregiving. In addition, caregivers seem to do better when they are supported by others. This
may be informal support such as reassurance and help from friends and family. Or, it may be formal help through agencies that
provide direct assistance such as meals and health care. It may be particularly important for caregivers of family members
with difficult behavioral problems to get help from the community. In any case, having emotional support or more free time
is vital to caregivers.
ConclusionsMost caregivers don't want a way out of caregiving. They see this as a responsibility,
a time to repay their spouse or parents for the support and care provided in earlier years. However, caregiving places numerous
emotional, physical, and financial demands on caregivers. In addition, employed caregivers often feel that they are holding
two full-time jobs, their eight-to-five employment and their caregiving. To protect their
personal health and economic resources, caregivers must find ways to reduce stress and to cope with caregiving so that they
will be able to meet their caring, work, and family demands, and to enjoy the many parts of their lives. For more information
about coping with caregiving, ask your Cooperative Extension Service agent for other publications in this series. Related
publications on stress management, financial management, and nutrition are also available.
No matter how loving a relationship between caregiver and care-receiver
there is still stress to contend with. Family members and friends, be aware of the stress of the primary caregiver and help
when you can. Caregivers, if and when you can, force yourself to take breaks, even if it is just a short walk. Care-receivers,
if and when you can, allow your caregiver to take a break without making them feel guilty. Encourage it when you can and don't
take it personal; your caregiver loves you, they just have a tendency sometimes to neglect their own needs.
Health Consequences
of
Women’s Caregiving
The toll that caregiving takes is not just financial. Higher levels of depression,
anxiety, and other mental health challenges are common among women who care for an older relative or friend. Studies find
that men respond to caregiving responsibilities in a fundamentally different way. Women tend to stay home to provide time-consuming
care to one or more ill or disabled friends or family members, while men respond to loved one’s needs for support by
delaying retirement, in part to shoulder the financial burden associated with long-term care.27 The impact of the
women’s intensive caregiving can be substantial. One four-year study found that middle-aged and older women who provided care for an ill or disabled spouse were almost
six times as likely to suffer depressive or anxious symptoms as were those who had no caregiving responsibilities.28
It’s not only care for a spouse that can affect mental health, however. The same study found that women who cared for
ill parents were twice as likely to suffer from depressive or anxious symptoms as noncaregivers.29 A particularly strong factor in determining
the mental health impact of providing care is the amount of care per week that a woman provides. One study found a marked
increase in risk among women who provided 36 or more hours per week of care to a spouse. Researchers concluded that there
may be a threshold of time involvement beyond which the likelihood of mental health consequences rapidly escalates.30 The incidence of symptoms or experiences are
not limited to depression. Various studies have identified other common hallmarks of women’s caregiving experience: A higher level of hostility and a
greater decline in happiness for caregivers of a family member.31 Greater increases in symptoms of depression, less “personal mastery” and less self-acceptance.32 High caregiving-related stress.33
Compounding this picture, physical ailments are not uncommon. Researchers found that more than one-third
of caregivers provide intense and continuing care to others while suffering from poor health themselves.34
Additionally, a 1999 study indicated that as compared to noncaregivers, women caregivers were twice as likely not to fill
a prescription because of the cost (26% vs. 13%).35 Elderly women caring for a loved one who has dementia may be
particularly susceptible to the negative health effects of caregiving because they receive significantly less help from family
members for their own disabilities.36 The physical impact of providing care can
lead to long-term care needs for the caregiver. For example: As
many as two out of three older women do not take advantage of preventive health services due to lack of information and high
out-of-pocket costs.37 25% of women caregivers have health
problems as a result of their caregiving activities.38 Coronary
heart disease (CHD) is one physical risk factor of caregiving. Women who spend nine or more hours a week caring for an ill
or disabled spouse increase their CHD risk twofold.39 Other
health effects include elevated blood pressure and increased risk of developing hypertension; lower perceived health status;
poorer immune function; slower wound healing; and an increased risk of mortality.40
Despite the physical and emotional tolls of caregiving and risk factors for disease, women
caregivers are less likely to have their own health needs met. One study found that women providing care to an ill/disabled
spouse were more likely to report a personal history of hypertension, diabetes and hypercholesterolemia. These same caregivers
were also slightly more likely to smoke and consume more saturated fat.41 Additionally, compared to non-caregiving
women: 42 25% (vs. 17%) rated their own health
as fair or poor 54% (vs. 41%) had one or more chronic health conditions 51% (vs. 38%) exhibited depressive symptoms 16% (vs. 8%) were twice as likely in the past year not to get needed medical care 25% (vs. 16%) had difficulty getting medical care
It
is clear that caregiving can have negative health effects. It is important to note, however, that although caregiving can
exact physical, emotional and financial tolls, it can also be rewarding. Some women caregivers:
FOR A LOVED ONE
WITH ALS A CAREGIVER's
POEM When I finish your sentence
is it rude and unfair?
If I give you more then one answer to chose, do you mind or not care? I try to make it easier for you and for me,
I am not sure
my efforts are something you feel? I
feel bad when I can't understand what your lips try to say,
As I lean in, I secretly hope that my breath is okay. The way you communicate is through your tears and your smiles,
Most times I see smiles, to carry us through 150 miles. I will always carry a straw and a napkin too,
To help try to do what your hands cannot do. At what point do you get angry and wish it were done?
So all
the struggles are down to none. How
do you keep going and not give up hope?
And how is it that I get strength from you, to help ME cope? I would love nothing else, but to find a cure,
Because, I
am not ready to close the door. By
Amy Cryer-Hassett
 To My Children When I spill some food on my nice clean dress
Or maybe forget to tie my shoe,
Please be patient and perhaps reminisce
About the many hours I spent with you.
When I taught you how to eat with care,
Plus tying laces and your numbers, too,
Dressing yourself and combing
your hair,
Those were precious hours spent with you.
So when I forget what I was about to say,
Just give
me a minute - or maybe two.
It probably wasn't important anyway,
And I would much rather listen just to you.
If I tell the story one more time,
And you know the ending through and through,
Please remember your first
nursery rhyme
When I rehearsed it a hundred times with you.
When my legs are tired and it's hard to stand
Or walk the steady pace that I would like to do,
Please take me carefully by my hand,
And guide me now as I so
often did for you. anonymous
GUILT - THE WEAPON THAT'S ALWAYS AT OUR
DISPOSAL
Pat Gates
Guilt. We can stab with it, we can be stabbed
by it. It can be inflicted on us by others and it can be self-inflicting. It's a good weapon if used rationally and truthfully
and it can help us change the wrong in ourselves if we pay attention to it. It can also be a burden to carry: rather than
an appropriate weapon to combat wrong choices, it becomes an irrational feeling based on feelings of inadequacy, rather than
reality. No matter, for good or for bad, guilt is painful.
If allowed, it can cut to the core of a person and, if it is needed, the pain is worth the change it can bring (remember the
story of Nathan and David). If not used correctly, however, we can inflict unnecessary pain to ourselves and our loved one;
this usually happens when we expect too much out of ourselves and others - when we expect more than we and they can give.
Care-receivers carry unnecessary guilt for feeling like they
are a burden to others. Caregivers carry unnecessary guilt
when they feel fatigued and dissatisfied. Other members of
the family carry unnecessary guilt when they can't be at their loved ones side all of the time.
Unnecessary guilt. It's
not practical and it only leads to more irrational thinking which becomes an even greater burden on ourselves and others.
See situations clearly and honestly. Giving away guilt to others. If our loved ones are tying their
best, but through ignorance or temptations from the stressful situation make mistakes, we need to be patient with them and
learn to communicate rationally, calmly and lovingly. If it is something we can keep quiet about and learn to live with, then
by all means we need to do that, but without bitterness! If our loved ones are tying their best, but through ignorance or temptations from the stressful situation
make mistakes, we need to be patient with them and learn to communicate rationally, calmly and lovingly. If it is something
we can keep quiet about and learn to live with, then by all means we need to do that, but without bitterness!
Guilt is the gift that keeps on giving!
Let's
all watch how we are treating each other. It is so easy to try and make the other feel guilty for those things we lack and
it is easy to make ourselves feel guilt whenever we can't help the situation we're in. Let's examine ourselves
carefully and make sure we have the right attitude about ourselves and about other family members. Let's be fair with
all and get rid of that heavy burden of guilt. Think
how well the family unit would function if we all put this verse into our
lives: "But the wisdom that is from above is first pure, then peaceable, gentle, willing to yield,
full of mercy and good fruits, without partiality and without hypocrisy." James 3:17
CARE-RECEIVER, don't
feel guilty for what you can't help. You may feel the need to tell your caregiver, "I'm sorry for the burden
I'm causing," and I understand that feeling, but do so now and then, not on a daily basis. Your caregiver doesn't
want you to feel that way, doesn't want to hear that constantly, and you don't need to always feel like you have something
to apologize for. Once in a while saying it, however, may help yourself and the caregiver. Instead of saying, "I'm
sorry for the burden I'm causing, say, "I'm sorry for the burden this illness
causes on you." It isn't your fault.
Don't
get your feelings hurt by reading what I write about the stress of caregivers. I'm writing as one who is not only a main
caregiver, but also one who has, in the past, been bed-ridden and homebound for months at a time, as well as presently needing
a caregiver at times. We need to recognize the illness causes stress in our caregivers, just like it does in our lives. It
wouldn't make sense, if it didn't. If you admit this and recognize it without feeling guilt yourself, the whole situation
will be much better for you and for your caregiver.
Don't expect long-distant relatives, ill relatives, ill
caregivers to be able to fulfill all your needs. Be understanding with them as you want them with you. Try calling on a neighbor
or ask a Christian to help with your needs, if you know your main caregiver or long-distant caregiver is too ill or not able,
for what ever reason, to fulfill your requests. Don't put guilt on any of your caregivers if they can't come to your
aid, after all they have needs and weaknesses as you, yourself do.
Do understand
the one caring for you loves you and desires to take care of you. Do
understand the one caring for you loves you and desires to take care of you.
CAREGIVERS:
Don't feel guilty when you feel stressed out and dissatisfied. It is normal. If you recognize this as a normal process
it will easier to work on how to help yourself rather than dwelling on how "bad" you are.
Don't blame the care receiver for all the changes in your
life. Your loved one does not choose to be in his/her situation. It is the illness that has changed your life, not the care-receiver.
Watch your voice and facial expressions that they do not cause unnecessary guilt on the one you are caring for.
Do be understanding with the family members who live away.
If they are doing the best they can, appreciate them for any efforts they do, but if they too are ill or in reality, can't
help, don't place guilt on them. I realize this isn't always available, but if you can find other sources of help,
that would be ideal. Do you have neighbors or other Christians you can ask for help?
OTHER FAMILY MEMBERS:
Don't feel guilty when you can't always be by your loved one's side. If and when you can, do so; it's good
for you, the care-receiver and the main caregiver. If you have health issues, live too far away or because of work you can't
do for your loved one as you would like to, instead of feeling guilty for that, do what you can, where you are and what you
are physically capable of doing.
Do try and help the main caregiver when you can; not only
does the caregiver need a break, but the care receiver needs a break as well. Just because you don't live in the same
house, doesn't relieve you of your duties.
Don't ignore your loved one who is ill/old because you
get too busy with your own life and you feel confident they are in good hands. Your loved one isn't in need of just physical
help, but is in need of love and affection. They recognize apathy from others and it hurts them. The guilt they may feel for
being a burden may be increased when they see those family members who have a choice to help them, choose not to. The ill/aged
need a break from the humdrum of life, they need a change
Caregivers Become the Memory
For the Alzheimer's Patient
"Caregivers
become the memory for their loved one with Alzheimer's disease," says Glenn Smith, Ph.D., a neuropsychologist at
Mayo Clinic, Rochester, Minn. "By gathering memories, you can bring important events and experiences from your loved
one's past into the present. You're the link to his or her life history."
Interview the loved one.
These memories can be preserved in many ways. You can:
"Caregivers
become the memory for their loved one with Alzheimer's disease," says Glenn Smith, Ph.D., a neuropsychologist at
Mayo Clinic, Rochester, Minn. "By gathering memories, you can bring important events and experiences from your loved
one's past into the present. You're the link to his or her life history."
Interview the loved one.
These memories can be preserved in many ways. You can: •
Write them in a journal
• Create a scrapbook with photos,
newspaper clippings, letters and postcards, greeting cards, sketches, poetry and musical verses
• Store mementos in a special box or chest
•
Create a video or audio recording of personal stories ~ selected ~
Coping Tips for Caregivers:
A to Z
 Always take care of yourself. Who will handle all of your responsibilities
if something happens to you?
Be as patient as you can with yourself and your loved one. When you are faced with a stressful situation, relax and
take some time to respond.
Contact senior centers and hospitals in your community to find resources that may help you. Local newspapers and public
places, such as grocery stores, may advertise meetings and support groups in your community.
Determine as soon as possible how finances will be handled and whether filing for disability insurance benefits or Social
Security benefits is warranted. You may want to contact an accountant to help you. Legal matters such as an advance
directive should also be addressed, and a lawyer’s
services may be beneficial.
Encourage your loved one to do as much as he or she can on his or her own. Don’t baby your loved one too
much and actually risk limiting his or her level of functioning.
Find out everything you can about your loved one’s condition and available treatments (e.g., cardiac rehabilitation, stroke rehabilitation). Knowledge can help you make informed decisions.
Give yourself permission to take a break, to feel angry, scared or resentful, to grieve, cry, or reach out for help.
You are in a stressful situation and you should take steps to help you cope. Caregiving is a continual process. Give
yourself room to re–group every step of the way.
Have the phone number of your loved one’s physician by the phone at all times in case of an emergency. Also, know
in advance the location of the nearest hospital that can handle a cardiac emergency as well as where your loved one's
physician has privileges. It is important to keep your insurance information available and know the coverage. The more you prepare, the less afraid you may feel when a medical situation
arises.
Ignore any attempts from others to try to make you feel guilty or obligated to give more than you are able or comfortable
to give. You know your limitations and it is important that you follow your instincts.
Jokes and humor from children, pets, friends and family can be a great source of strength. Try not to push humor out of your life,
even when things are very serious. It’s still okay for you and your loved one to laugh and find the lighter
side of the situation.
Know your limits. Set your own goals and design your own schedule. Don’t let anyone else decide what you are capable
of accomplishing.
Let your loved one know with a word, touch, smile or hug that the disease has been stressful for both of you, but that
he or she still has your full support. Not only is that support helpful for your loved one, it is also important for your
own well–being. You should try to keep the bond strong when caring for a loved one's physical and emotional needs.
Make peace with your loved one. It's best to resolve past hurts as much as possible in order to move forward in
the caregiving relationship.
Never take responsibility for your loved one’s decisions. If he or she does not make progress, does not take the
medication you offer, refuses to go to a doctor’s appointment or makes other decisions that are beyond your control,
it’s not your fault. Patients make decisions that are beyond your control and you may not be able to do anything about
their choices.
Organize responsibilities into as comfortable a routine as possible, allowing for the fact that caregiving is always
full of surprises.
Prepare an emergency card with basic medical information and keep it close by so that hospital personnel will have access
to vital information in the case of an emergency. Be sure to include a list of conditions or diseases, past procedures or
surgeries, current medications, any implanted devices (e.g., a pacemaker) and an emergency contact name and phone number.
Question anything a doctor says that you don’t understand. If you find yourself unclear about something after
leaving a doctor’s office, try to write down other questions for the next visit.
Remember that you are not alone. Many other adults are caring for elderly loved ones, as well as their own children.
Support groups and online communities are available available to help people in the same situation. If necessary, seek out
counseling to help you with your role as caregiver.
Stretch. Breathe. Re–energize. Take small breaks whenever you can to nurture yourself, and lean on available resources
to help you take longer breaks. One such resource is the Eldercare Locator, a public service of the U.S. Administration on
Aging (1–800–677–1116).
Team up with other people to help you accomplish tasks. Rather than handling ten things every day on your own, enlist
the help of others so that ten people can do one thing every day. A team approach can help you deal with tasks that may seem
overwhelming.
Update the list of your loved one’s medications and dosages, and do everything possible to make sure that your
loved one takes all medications as prescribed. Also, keep a written record of the medications – this can help if you
are faced with an emergency situation.
Verbalize your thoughts, feelings and plans with friends, family members, coworkers, and support personnel. People
may not be able to help unless you tell them what you are experiencing. Sometimes you just need an attentive ear to listen.
Watch for any signs of caregiver burnout in yourself, including mood swings, withdrawal from friends and family
and uncontrollable crying spells. You may also experience feelings of despair or helplessness. All these may be
signs that you are trying to do too much by yourself.
X–rays, EKGs, catheterizations, surgeries and other medical tests and procedures take time. You may find
yourself with hours to spend in hospitals or doctor's offices. Plan ahead for how you can make this time as productive
and personally fulfilling as possible.
Yell in privacy, pound a pillow, sing with the radio at the top of your lungs. These and other strategies for releasing
pent–up emotions may help you vent your feelings. If you begin to feel out of control, contact someone to help you cope
with the situation.
Zero in on exactly what is stressing you out before you try to do something about it. For example, if you feel upset
about a difficult situation, are you worried that your actions may have caused the problems? Or, are you scared that
you will have to handle additional tasks? Analyzing your feelings is a step towards stress
management. Advance directive should also be addressed, and a lawyer’s services may be beneficial.
author unknown
via the internet (sorry, I forgot to copy the URL)
Caregiver Caregiver, what an inadequate word
to describe what it is that you do.
Lifesaver
is more fitting a word
for what comes so freely from you.
I don’t have to ask for what I need
It
appears quietly at my side.
You never complain, you never begrudge
You let me keep my pride. It’s
hard for those of us who are
No longer who we were before.
It doesn’t make you love us less
If
anything, you love us more. It truly is a gift from God
The way you care for me.
If I did not
have you in my life.
I cannot think of where I would be.
You don’t get the praise that you deserve
For
standing solid and true
It’s not enough to say just ‘thanks’.
It’s enormous, this thing that you do.
You truly are a wonder
A treasure beyond price.
You stuck by me through the raging storm.
Not
ever thinking twice.
A weaker soul would run away
From the sickness and the pain.
But
not you, not ever
You’re always here, again and again. So to you, dear ‘caregiver’
My
heart lies at your feet
You are the reason it functions still.
You are every strong, solid beat. Kathleen Easter 2001
http://www.wearefmily.com/poems.htm
Interview
With A Caregiver
by Cindy Granke
In April, 2001, David and Anne Powlas, who live
in Columbia, South Carolina, where he was a preacher, packed their car and headed to Kentucky on a long overdue vacation that
ended with David’s leg being amputated and both of them facing a challenge which would change both their lives forever.
Anne agreed to tell me what happened and how she learned she was stronger than she ever thought she was. Cindy: Anne, thank you so much for being willing to share your experience with Our Hope
readers. I know the story of David’s amputation begins in April 2001, on your vacation in Kentucky. How did it evolve? Anne: As you know, David is a diabetic. Before leaving on vacation, he had developed some
blisters between the toes of his left foot. He had tried to self-medicate them, and we thought the blisters were healing.
While traveling, we were in the car for hours at a time, without him being able to stretch. Cindy:
When did you realize this had become a problem? Anne: By the middle of
the week, he was nauseous and feeling very poorly. On his birthday, April 10, he epitomized the phrase, “looking like
death warmed over.” That night he started throwing up, and by then his toes were bleeding and had a terrible stench
to them. We decided to go straight home to Columbia and to the emergency room. It was an eight hour drive from where we were,
in Kentucky, with me only stopping to make "pit stops" and get fast food to go. I have to believe that God was taking
care of us because I am NOT a navigator. That's what I have David for - but he slept most of the way and didn't eat
anything. Cindy: You’ve told me you drove to the emergency room
of Providence Hospital which was most familiar to you, since David had his two earlier heart surgeries in the special heart
center there. Anne: When we got to the emergency room we were told that
gangrene had set in and the worst case scenario was that David would lose half of his foot. It was hard to hear the doctor
tell us that, but we thought that would be all right as long as they got the infection. His primary physician was at Lexington
Medical Center, so an ambulance took him there. My mother and father met me there, and about 2:00 a.m. that morning, David
was finally admitted and I got him settled into his room. Then I went home with my parents, who live only ten minutes from
the hospital. Cindy: What was David’s condition, when you returned
to the hospital, that afternoon? Anne: When I went to the hospital later
that day, the surgeon had already been in to talk to David. He told David that the gangrene was traveling up his leg, and
if they didn’t take it below the knee, he would die. Cindy: It
must have been horrible hearing the doctor tell you something like that. Anne:
You wonder what you would do if you were ever told something like this, but is there ever really any choice to make? Hearing
those words given to the man I’ve shared my life with for more than twenty-six years was one of the hardest times of
my life. Cindy: It was the next day, Friday the 13th, when David’s
left leg was amputated just below the knee. Superstitious folks would have a hay day with that. Anne:
We’re not superstitious, but we’ll never forget the date. Fortunately, that was all they had to take because the
infection had not traveled farther up his leg. Cindy: How did you deal
with this, Anne? How does a wife face such an ordeal? Anne: I have to
say that I have had an excellent support network throughout all of David’s surgeries, and I just can’t imagine
how I would have handled this without the love and caring of those who waited with me, or who called during the surgery to
find out how things were going. When the surgeon came out and told me that David had come through the surgery fine, I was
able to breathe a little easier. Of course, I knew that challenges were ahead of us, but I also knew that we could face them
together as we had with everything else over the years. Cindy: I’ve
known you both for many years, and I remember you saying that keeping your sense of humor helped you approach the changes
in your lives, after David’s heart surgeries. How about after this? Anne:
Some would say that David and I have a strange sense of humor, but it works for us. Yes, there were many tears shed over the
news that he would lose his leg, but we tried to deal with it the best way we could, and that included laughing at some things.
In fact, David’s sister-in-law got very upset with him one day because she didn’t think he was taking the situation
seriously enough. Our feeling was, why dwell on what you can’t do anything about and make yourself miserable? We laughed
about the positive things that could come out of this. We could now park in handicapped spaces, and be closer to the stores!
And David would only have to pay for one shoe instead of two! (By the way, that doesn’t work – they don’t
sell single shoes.) The point is, that we chose to use humor to diffuse the awful experience David was going through. Cindy: But surgery wasn’t the end of having a limb amputated, was it? Anne: That in itself was a challenge, but then he was sent to a rehabilitation hospital
for two weeks, after his surgery. There he learned to function after the loss of his leg. His therapists were excellent and
he learned how to live so that he would not have to rely on someone else, all the time. They even taught him how to get up
off the floor, which came in handy later on. Cindy: What was going through
your mind as you were trying to get things ready for David’s return home? Anne:
David’s therapist uttered the most terrifying words – “You’ll have to change his dressing when he
goes home.” Now, anyone who knows me wonders how in the world I ever managed to do that! Five years before, if someone
had told me I would be changing bloody bandages and treating an amputation incision, I would have told them they had bats
in their belfry! Philippians 4:13 says, “I can do all things through Christ who strengtheneth me.” It’s
true – you can do what you have to do. The first time was a very nauseating experience for me, but after that, I was
a “pro.” And I did it with flying colors, if I do say so myself. Cindy:
You’ve told me there were unexpected challenges you had to face together, after David came home. What were they? Anne: All was going well until about a week or so after David got home. Fortunately, I was
still home and hadn’t gone to work yet, when he lost his balance and fell, landing on the incision. It burst the stitches
and he was bleeding a lot. He was on blood thinners because of having a mechanical valve put in his heart, a year before that.
I told him we were going to the emergency room, and his reply was, “Let’s wait and see how it is, a little later.”
I was adamant about this, and he did agree to go. I thought I had seen the worst when changing his bandages, but nothing prepared
me for this. There was a big hole in his leg where the incision had opened up. The surgeon couldn’t stitch it back up,
and he told me I would have to pack the hole, until it healed. I’m sorry if this is making anyone queasy, but I think
you have to understand the severity of the wound to appreciate how wonderfully David handled it. I, on the other hand, wasn’t
doing so well. I hope you never have to look at such a wound in a loved one’s body, and have to pack gauze in it to
keep it from getting infected. Cindy: Was there anything the doctors
could do to promote healing, or did you simply have to wait? Anne: David
qualified for hyperbaric oxygen treatments, and for several weeks, he went every weekday to the hospital where he was put
into a chamber into which pure oxygen was pumped. He had to lie still for two hours, which very difficult for him. However,
these treatments sped up the healing process, and finally closed up the hole in his leg. Cindy:
After the wound healed, did things become more normal in the Powlas household? Anne:
David was fitted for a prosthesis. Although he didn’t have any padding in that one part of his stump, he wore the artificial
limb the best he could. Then he was told he could get a prosthesis with a flexible foot and it would be easier to walk, so
he was fitted for that. It was working out well, but that one place on his leg was tender, and because the pain of having
his weight on it was just too severe, he decided to go back to his wheelchair full time. Cindy:
How difficult was it to accustom yourself to your new duties as caregiver? Anne:
Needless to say, I’ve had to adjust to a lot of things over the last four years. Some of them have been relatively easy,
and some were not. I want you to understand that David's pretty independent in his own right, but there are times that
he needs assistance. He’s always wanted to do things for himself ,as much as he could. At first, I wanted to do everything
for him, including push his wheelchair everywhere; but he wanted to do it himself. Of course, there were times when he did
need me to help with steep inclines, or when there wasn’t a wheelchair ramp for him to use. He did figure out a way
that he could back his wheelchair up onto a sidewalk, and that gave him even more independence. Cindy:
As a caregiver, did you find that some things were more difficult than others for you to adjust to? Anne:
I’m an emotional person, and I have shed many tears over the last few years, because of everything that has happened
to us. I’ve had to become David’s sole transportation. I take him to all of his doctor’s appointments, and
for a long time, I wouldn’t go to any social functions unless he could go with me. He finally urged me to go without
him. At first, I felt guilty doing so, but I realized that he didn’t want me to be missing out on the association of
family and friends just because he couldn’t go, or he didn’t feel like going anywhere. I’ve had to learn
how to put a wheelchair into and out of a car trunk, and into the back seat of a truck, when we’ve had car trouble and
my parents have loaned us their truck. David pretty much fends for himself, but there are times when I have to reach something
that’s higher than he can reach in a store. I’ve never resented
having to do things for David, but there are times when I become frustrated about having to deal with certain situations.
I have to do all of the driving, and even though I used to love to drive, I wouldn’t mind being a passenger sometimes.
I’m extremely fortunate that I work for a company where I can use my sick leave for immediate family members. I’ve
been able to stay home with David for a week or two after his surgeries, until he could handle staying by himself. I can also
use sick leave for doctor’s appointments, so I’ve been able to take him to all of his many, many doctors, over
the years. Cindy: When I asked you to talk to me about this horrible
time in your life, you weren’t sure you would be able to do it, but you have, and I thank you for sharing your experience.
There are others who will read this and will be able to identify with you. Do you have any final thoughts? Anne: It all comes flooding back – the fear, the anxiety, the hurt, and also the joy
and laughter that we’ve shared. Some people are horrified when they hear us joking about it. Don’t get me wrong
– the situation itself and David losing his leg was anything BUT funny, but we’ve learned to make jokes about
different things associated with having – and taking care of someone with - only one leg. A
merry heart doeth good like a medicine:
But a broken spirit drieth the
bones.
(Proverbs 17:22)
Communicate with Your Family and Friends Turning to family members or friends for
emotional support and help can be a mixed blessing. Their visits may make you feel less alone and better able to deal with
caregiving responsibilities. They can give you a break by spending time with your carereceiver. However, other relatives or friends can be critical of the way
you provide care. They may feel the house is not kept clean enough; or they may not like the way your carereceiver is dressed.
Recognize that they are responding to what they see at that time and are lacking the benefit of experiencing the whole picture
and any gradual changes in your carereceiver's condition. Harsh criticism may be a response to their own guilt about not
participating more in the care process.
Try to listen politely to what is being said (even though this might not be easy). However, if you and your carereceiver feel
comfortable with the way you are managing the situation, continue to do what meets your needs. Schedule a family meeting from
time to time to help other family members understand the situation and to involve them in sharing the responsibilities for
caregiving. —from The Caregiver’s
Handbook
OUR HOPE JANUARY 2006
Staying Focused On Our Blessings
By Cindy Granke
Caregivers often find their
daily responsibilities to be so exhausting that they drop into bed each night, and may even fall asleep when they are praying.
May I suggest a simple way to help you stay focused on the pleasant or good things that happened during your day?
One of the most helpful and uplifting things that I have found to do for
myself is to keep a “daily blessing notebook” or an “I am thankful journal.” If
you’ve never tried this, why not begin 2006 with your own daily reminder of one thing that happens in your life, each
day, for which you are especially thankful. Keep it short and simple or
you’ll be tempted to not do it every day. Some of my entries in my own notebook have been things like:
- First
butterfly of spring in my garden
- Had enough money to get air conditioner repaired
- It snowed today (In South Carolina,
that’s a rare and beautiful thing).
- My prayer for _____ has been answered.
You may
use a regular wall calendar, or a small desk calendar – anything that has a bit of space for you to write a few words.
If you prefer, a simple spiral notebook is perfect. A small one is a good starting place.
Keep the notebook on your bedside table, with a pen or pencil. Each night, before you go to bed,
jot down one or two blessings that occurred that day. Even on the worst of days, there is always a blessing
tucked in there somewhere. When you are finished, you can begin your prayer by thanking God specifically
for the blessings you wrote in your notebook. It helps us to focus on God’s gifts to us, especially
when our lives are stressful, and our bodies are tired.
OUR HOPE/JANUARY 2006
Five must-do's when a loved one is ill
Elizabeth Cohen (CNN) wrote an article suggesting some tips to helping
loved ones who are ill. The following are excerpts from the article. You can read the entire article at http://www.cnn.com/2007/HEALTH/conditions/09/13/ep.patient.advocates/index.html
The writer stated we should be an advocate for the one who is sick and not to be afraid to speak up for
him/her. Medical professionals, from doctors to nurses, as well as technicians can and do make mistakes.
In the article these suggestions were listed for ways to fight for a sick loved one.
Rule No. 1: Don't be afraid to intervene
Rule No. 2: Ask questions
until you understand the answer "Don't leave the room -- or let the doctor leave
the room -- until you understand what he's just told you. One day, a gastroenterologist walked
into a patient's hospital room and said, 'Look, here's what's happening,' and he said, 'Yada, yada,
yada,' and went way up in the clouds,'" Garrett recalled. "And then he looked at the wife and
said, 'Do you have any questions?' and she said, 'Yes. What did you just say? I don't have a Ph.D.'
" Rule No. 3: Remember that you know things the doctors don't Patients often will tell a loved one something they won't tell a doctor -- because it's embarrassing or because
they don't want to bother the physician. "Keep your loved one honest, make sure they
tell the doctor everything." Rule No. 4: Temper your loved one's enthusiasm for
quick fixes Rule No. 5: Scope out the nurses It's
crucial to befriend the smartest, most helpful nurses early on. "Nurses will guide you," she said. "Nurses
are where it's at." Of course, with all this advocating, it's possible to get on
the wrong side of the hospital staff. One wife said she periodically checks in with the nurses. Another tactic:gifts. "It
doesn't hurt to take candy to the nurses. Call it a bribe if you want to, but they're human beings. If you bring
them candy, it may help them do something extra for your loved one."
 Empathy
James R. DuniganAs a preacher I have been
called on to sit with brethren in the hospital, pray with those who have erred or preach the funeral of a friend or loved
one. Through all of these and more occurrences I felt what we know as "empathy" toward those who had this need.
I wept with the family of the lost loved one, prayed earnestly for the ill and sin sick. I felt I knew the emotions and pain
involved. I felt their joys but now I also felt their pain and sorrow. Empathy - "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the
feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience
fully communicated in an objectively explicit manner; also: the capacity for this." A big dictionary definition for "I
feel your pain!" Empathy - while this word is not used
in the Bible, it is certainly taught in essence. Empathy is usually what drives our compassion. It was said of Christ in Matthew
20:34: "And Jesus, being moved with compassion, touched their eyes; and straightway they received their sight, and followed
Him." Many other passages teach us the compassion of Jesus Christ. We know Christ felt weary, He felt hunger and He felt
compassion. He knows our physical limitations as no other because He created us too. He understands our temptations because
He suffered them himself! Hebrews 2:18 (NASV) "For since He Himself was tempted in that which He has suffered, He is
able to come to the aid of those who are tempted." He knows the loss of a loved one as He wept for Lazarus. His apostles taught us to be compassionate in 1 Peter 3:8 and 1 John 3:17. The
early Christians demonstrated this compassion through out the New Testament. Acts 4:32, 37-38; 1 Cor. 13:3; 16:1-2; 2 Cor.
9:1-2. Empathy - accord, affinity, communion, compatibility,
concord, congeniality, fellow feeling, rapport, responsiveness, warmth; appreciation, comprehension, understanding. These
are all words that are comparable to empathy- it helps us to better understand the concept. We are to edify and uphold the
weak brethren, we are to rejoice when our brother rejoices and weep with him when he weeps - Romans 12:15. All of this leads me to another point - we are told in James 1:2-4 "Consider
it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And
let endurance have its perfect result, that you may be perfect and complete, lacking in nothing." Could the results of
theses trials of physical and a spiritual nature not produce true empathy in us? Would it not be part of this perfect result?
Empathy turned to compassion? When one becomes the object of
gossip and scorn do they not understand it's bitter pain and the harm it can cause? We can respond in kind or we can allow
ourselves to remain godly and not fall into the same trap this erring person has. But now we can understand its harm to others
because we suffered this trial. I have held the hand and wept
with many people who have lost a loved one close to them. A grandparent, a spouse and loving parent or child. I lost my grandparents
several years ago so I understand that pain. I lost my dad recently after a long illness. I understand the long nights in
hospitals hoping and praying, I understand the pain of seeing him take a last breath. Oh the prefect working of compassion
I can now have for others since I stood this trial. I have prayed
and sat with others during minor or major surgeries and illnesses. Last Saturday I woke up to find the left side of my face
not working. My eye would not close or blink and my smile was totally shot. Bell's Palsy the diagnosis, I now know what
it is like to be looked at "funny" and I know the feeling of helplessness as your face refuses to respond to the
brain's instructions. On a lighter side I know what it is to be asked what happened to my eye when I wear my eye patch
to protect it and have a young boy "whisper" to his mom that man is retarded, based on nothing else but the way
I now have to talk. Yes it will pass but yet... true empathy and compassion for other who have permanent disabilities are
now understood to a greater degree. The feeling of walking around with one eye covered - blind in essence makes me appreciate
my sight more and I have more compassion now for those with no sight in one eye or both. Many of our trials are physical and
but they try us spiritually too. We can grow stronger or succumb to the many temptations to be angry with God or others for
our hardships. No I am not alone in my trials. I have been taught that I have a loving family in my sisters and mother and
others in the extended family, but I have also learned what a loving and wonderful family I have among the household of God.
I have learned that they are there in all things - the joy and the pain. I have learned that God is much wiser than I and He has already taught me the concept of how to handle my trials.
Prayer and study of His Word comfort me. My brethren edifying me strengthens me and makes me more determined to go on. All
these and the determination to please God in all things help me to pass these trials. Yes these trials will pass for me and
they will pass for all. We must let them complete its work in us - be steadfast and remember to have empathy and compassion
for others who need our strength in their times of trials.
A
Servant's Prayer
Make me a servant, Lord.
Give me a servant's eyes,
Able to see
the slightest needs of those around me. Let
me have a servant's ears,
Tuned to detect the softest cry of help from the lowliest person. Give me a servant's voice,
One which speaks words of comfort
and cheer to those in despair. Give me a servant's hands,
Let them be tough enough for hard work and tender enough to touch a crying child. Make my back a servant's back, Lord,
Strong enough to bear both my own and
the burdens of others. Let me have a servant's
knees,
Let them be flexible enough to bend to the lowliest task and to pray. Give me a servant's feet,
Let them be quick to take me where I can do the greatest
good for the weary pilgrim,
My lowly brother and my broken hearted sister. And Lord, most of all, give me a servant's heart,
Because with that,
Lord, the rest will come in due time.
(author unknown)
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