Sunday, February 19, 2012

Help for caretakers

This post could really be for anyone that is a caretaker for anyone suffering with any illness.  The caretakers are everyone and anyone who is involved in a survivors life, spouses, parents, children, friends, aunts, uncles, siblings.  Anyone who assists in the daily needs with those stricken with an illness or illnesses.  This can be a very stressful job, and having support, love, and help is vital for the health of the caretakers. Caretakers can become ill themselves and need help for their own problems.  To watch how much my husband, children, parents, and friends all rally around me and help me is such a blessing.  I also am mindful of their struggles with dealing with my illness on top of their own issues.  

Significant Others and Lupus

Posted in Lupus Articles on 7/27/2010
The family member/significant others of the sufferer of a chronic illness like lupus, in m ay ways, experience feelings similar to that that of the primary sufferer. They not only want to give support and help the sufferer deal with his/her feelings, they also need to deal with their own feelings regarding lupus and the impact on their relationship with the sufferer.
Significant others may feel responsible for taking care of the sufferer or helping the patient make decisions. They want to give him/her support but don`t know how to or what to say or do.
Feelings of Significant Others
  • Concern for the loved one with lupus or other chronic illness
  • Confusion about how to deal with the complexities of their illness
  • Difficulty understanding why did this happen
  • Helplessness - wishing they could have protected their friend/partner or prevented this illness and wanting to fix the situation so that life can get back to "normal"
  • Shame - there is something wrong with this person. This shame could lead to feeling a need to distance them from the sufferer, leaving the sufferer feeling isolated, rejected or blamed for being ill, which can be very damaging
  • Temporary loss of intimacy with the patient. It may be difficult for the significant other to deal with the disease. Patients have been forced to recognize their own vulnerability, and as a result may find it difficult to trust enough to be close, even when the relationship is strong and nurturing. Intimacy will return with the help of a nurturing, patient partner
  • Feeling out of control of their life. The illness has changed the significant others; nothing feels the same. feeling out of control is a normal response to a critical incident; control will return with time
  • Although a natural reaction, wanting to strike out (anger) but not knowing who or what to blame
  • Frustration with professional systems
  • Anger. Anger can be a healthy response to an illness and can be directed at the disease or the systems that don`t work. Although anger is appropriate, acting out violently is not appropriate. Significant others need to understand the venting anger on the patient is counter productive. Difficutly expressing their own feelings, difficulty asking for help - may feel that because they are not the primary sufferer they shouldnt be using patient support systems or thaty they should be able to handle it.

Remember giving support means listening, asking how you can help, encouraging, helping the patient ask for what he/she needs, being sensitive and patient, not trying to "fix" the situation, supporting decisions that allow him/her to regain control over his/her life.
No one aks to be involved in a chronic illness. It is not easy. Significant others are responsible for dealing with and finding support for their feelings regarding the illness and their relationship. A chronic illness like lupus is on-going anad it is a normal reaction to want it "over with". Hurry up and get well messages will only force the patient to stuff feelings, internalizing her/his anger and pain, causing him/her to distance themselves from those that care about them, causing them to feel further isolated.
A disruption of routine, even without illness is anxiety-producing. Recognize that you and the patient may both be in crisis. Prioritize issues that need immediate attention and let go of the decision that can wait. All patients blame themselves to a degree for an incident or for being unable to prevent it. reassure the patient many times that it wasnt her/his fault - that he/she did the best they could, that they did nothing to bring this upon themselves.
Your own feelings, personality or your role with the patient may make it difficult to ask for help. it is extremely important for you to talk about lupus, and its affect on you with a supportive person, who has knowledge or sensitivity about the issues surrounding lupus, and your relationship to the patient.

You are a caregiver if you give basic care to a person who has a chronic illness like lupus. If you are a caregiver you might be doing the following things for someone you care about who has lupus:
  • Lifting
  • Bathing, dressing, feeding, cooking and shopping
  • Paying the bills
  • Running errands
  • Giving medicine
  • Keeping him/her company
  • Providing emotional support
  • Taking him/her to doctors visits
  • Keeping records of symptoms, doctor visits, medications and more

Common Signs of Caregiver Stress Include the Following
  • Feeling sad or moody
  • Crying more often than you used to
  • Having low energy levels
  • Feeling like you dont have any time to yourself
  • Having trouble sleeping, or not wanting to get out of bed in the morning
  • Having trouble eating, or eating too much
  • Seeing friends or relatives less often than you used to
  • Losing interest in your hobbies or the things ou used to do with friends or family
  • Feeling angry at the person you are caring for or at other people or situations

If you are feeling overwhelmed and stressed these feelings are not wrong or strange. Care giving can be very stressful. Because being a caregiver is hard, some doctors think of caregivers as "hidden patients". If you dont take care of yourself and stay well, you wont be able to help anyone else.
Talk with your family doctor about your feelings. Stay in touch with yoru feelings and family members. Ask them for help in giving care. Asking for help doesnt mean you are a failure. Look for help in your community. You may start asking your church or synagogue if they have services or volunteers who can help you. You can also ask for help from support organizations like the Lupus Alliance. 

Caring Others 

  This section will focus on how families, friends, co-workers and employers are able to best help the person they know with lupus.  The term Caring Others encompasses all possible people who may know someone with lupus and who want to learn how to best support them.

There is no right or wrong way to support a person with lupus. The key is listening and really hearing what your loved one is asking for and what they need help with.  
Always remember, they may look "normal", even fantastic, but that doesn't mean they are feeling well.  This is probably the greatest single area of understanding you should always keep in mind.
 Caring Others Overview Part II
Lupus patients rely on an army of healthcare professionals to combat the many aspects of their disease.  However, on the home front, wives, husbands, children and other loved ones play crucial roles in helping lupus patients cope and live life as fully as possible.
This series of articles will focus on “caring others” – those people who live, laugh and love with relatives and friends who have lupus.  Because the disease is so individual, several different aspects of the caring others relationship will be explored, from parent to child to spouse to friend and beyond.
There are many turning points, frustrations, and victories that caring others experience – a whole lot of tears and laughter!  Through it all, there are valuable insights that come with coping with a chronic disease.  These articles will share the personal ups and downs of the remarkable people who care about and for their loved ones with lupus.  And hopefully, through individuals’ stories, some common ground, understanding and encouragement will be given, too.
When the Life of a Loved One is Turned Upside Down
The effect of a person’s lupus diagnosis on loved ones can bring on a wide array of emotions:  Denial, grief, confusion, fear, even relief.  Besides coping with the patient’s illness, the loved one must grapple with these internal emotions, which are often powerful and painful.
“Before she was diagnosed with lupus, I didn’t have any strong feelings about her physical health,” says Joyce, the mother of Maureen, and adult lupus patient.  “The diagnosis was a sho ck, and afterward there was a complete upheaval in my own thinking about her well-being.”
“Prior to her diagnosis, it was very confusing.  I knew something was wrong, but the problem with lupus is that you don’t look sick necessarily,” says Irv, who has been married to Brian Ann for 21 years.”  “After her diagnosis, I still didn’t know what lupus was.  But it was happening.”
Because the course of the disease varies from patient to patient, loved ones also can experience frustration at the degree of change and upheaval in everything from medications and treatments to daily routines.
“In the beginning, it sounded like a disease that was a nuisance.  I didn’t comprehend the life-threatening and debilitating aspects of it,” says Alan, who has been together with Barbara for 10 years.  “Time certainly took care of a lot of that knowledge.”
“With any chronic disease, there’s an element of surprise,” says Jeff, who has been married to Fredi for almost 17 years.  “With lupus, you’re bound to have surprise; you just never know what each day will bring.”
Other aspects of the world of lupus can be just as difficult for a loved one to have to face.  Joyce says, “It would make life easier if there were more research into the disease.  It’s frustrating that there hasn’t been a whole lot of research.”
“It tests your dedication, love and caring for the other person like nothing I can think of,” says Jeff.
“With lupus, ‘A’ never equals ‘B’ – there’s a whole big alphabet out there,” says Alan.
Still, with all the difficulties and unexpected changes, many people nurture and maintain relationships with lupus patients – and speak enthusiastically about it!
“What’s the alternative?” asks Joyce.  “Unless you sever yourself from the relationship.  You need to be there, encourage and pray.  They have to know that there’s someone who cares.”
“I’m part of her and she’s part of me,” says Irv.  & ;ldquo;You’re part of each other.  The more I can help, the better off she is and therefore I am.” 
“Who wants to marry a lupus patient?”  asks Alan.  “The truth is, lots of people!”  In fact, many relationships thrive in the midst of the frustrations and difficulties in coping with lupus.  Jeff says:  “You come to terms with accepting the fact that the person you married, who you love, has this disease.  If you love that person, then you have to deal with it.  If you love somebody, you will give it your best shot.”

Caring Others Part III

By Maureen Pratt
People who care for others with chronic illnesses have many concerns to worry over, take care of, and resolve.  But sometimes, a crucial part of that care is overlooked  -  a person, an individual: the caretaker him – or her-self.  In this issue of Lupus Line, we will focus on the caretaker, and some of the tools he or she can use to rejuvenate, refresh, and maintain health and well-being in the midst of the unpredictable world of living with lupus. 
Caregivers sometimes have an almost super-human notion of what is expected of them as they help a loved one cope with lupus.  While we as lupus patients need strong support in our day-to-day struggle, it is unrealistic to think that the caregiver doesn’t need some attention, too.  Even though he or she might not always realize that, at first.
“I think I’m expected to be strong, not have the emotions, cry, or express worries or concerns,” says Nicki, who has cared about and for Pam for ten years.  “Every now and then, of course, I show them.  But I think this is what I’ve had to do inmy own private times.”
“Sometimes, caregivers have as much stress as the patient does,” says Misti, a lupus patient and facilitator in a lupus support group in the Inland Empire, California, USA.
That stress can often bring about new problems in a relationship that is already strained by the upsetting nature of lupus.  A caregiver could become alienated from the loved one, fall ill, or suffer other negative consequences.  But, Misti says, “Caregivers are responsible for their own welfare, and that’s hard if you’re not given permission to express the feelings you have about your loved one’s illness.”
To help ease some of the stress felt by caregivers.  Misti’s husband, Tim, became a co-facilitator of a caring others support group.
“I went through the transition from denial to having a fatalistic outlook to acceptance and participation,” says Tim.  “Then I really started thinking, ‘I’m not out here by myself with these thoughts and feelings and frustration.  I’m sure a lot of people are dealing with these problems.”
Besides providing information, the group also gives others the opportunity to express their emotions, which can be very beneficial to the relationship.
“When you disconnect emotionally, you pay for that down the road,” says Tim.  “It’s okay to be angry, okay to have regrets, okay to vent.  The format of the group is open, informal, and interactive.  I invite people to not expect pearls of wisdom, but do expect people going through the same things you are.  No judgements.”
Still, caregivers can sometimes judge themselves, harshly.  At those times, it is important to remember that, like the lupus patient, the caregiver is human, too.
“When I have a cold,” says Jay, the daughter of Jean, “I sometimes fell bad to be complaining at all, because it can’t be nearly as bad as how my mother feels.  But you have to take time out for yourself, as well.”
In addition to maintaining a healthy lifestyle, the caregiver should not feel as though his or her activities revolve exclusively around lupus.
“I always have activities outside the home, especially classic car restoration,” says Tim.  “I’m really now starting to enjoy and value family life, too.  For instance, I can play on the computer at home.”
“I take personal time,” says Carlos, who co-facilitates the Inland Empire (California) Caring Others support group and is married to Linda, a lupus patient.  “I belong to a bowling league.  I’ll also work on the computer at home.  That way, we have time to ourselves, but we’re there for each other, too.”
“My interests have stayed the same.  My friendships outside the relationship have stayed the same,”  says Alan, who has been with Barbara for 10 years.  “I did take up golf.  Barbara encouraged that, and also prompted me to wear a long-sleeved shirt and sunscreen!”
To keep the relationship strong, however, it’s important to share activities with the loved one, too.
“We have our own things.  I like posters, she likes jewels,” says Irv, married to Brian Ann for 21 years.  “And I have a lot of things I can do on my own, such as reading or watching a show.  But you start growing in a different direction if you’re not sharing things together.
Bob, married to Jody for 18 years, says, “ We had to come up with other things to do besides biking and hiking and going out in the sun.  But the whole thing about a relationship is growing together and coming up with new and meaningful things.  Having a chronic illness in the relationship just means you have to be more obvious about it.”
Keeping in touch with the inner self, through prayer or meditation, can also help support a caregiver.
“It took a couple of years to calm down,” says Nickie.  “Now, I kind of renewed my spiritual side and pray a lot.  There’s been more optimism within me.”
“The key word is: ‘patience,’” says Tim.  “If there’s a nugget of wisdom for me, it’s to slow down for a minute and pray for patience.  It goes a long way.”
The lupus patient can assist his or her caregivers, too, in reducing the stress of living with a chronic illness.
“What really helped me through this whole thing is that I had somebody to start off with who was dealing with is so well,” says Tim.
“I give Jody a lot of credit,” says Bob.  “She’s a strong person, and she’s certainly done her part to try to keep things together and good.  She always has a terrific attitude.”
“I like my mother,” says Jay.  “If she wasn’t my mother, I would like her.” 
Living with lupus is never easy for the patient.  But for the caregiver, it is also difficult.  With open communication, some creative alternatives to past activities, and understanding on both sides, however, a relationship can survive and thrive – with lupus, in spite of lupus, and beyond lupus!

Helping Hands
Roles are redefined when you become the caregiver of a loved one.
By Amy Paturel, M.S., M.P.H.

For as long as Jennifer Castro can remember, she and her mom, Rebecca Utley, were best pals. Pregnant at just 17, Rebecca raised Jennifer on her own, and in a way, the two grew up together. In fact, for as long as Castro can remember, “It was just Mom and me.”

When Castro was 23, her mom began experiencing skin rashes, headaches, sun sensitivity, and fatigue, and was ultimately diagnosed with lupus. As the disease progressed, Utley filed for disability, stopped working, and spent most of her time in bed or on the couch.

“When I wasn’t working, I was taking care of her appointments, grocery shopping, cooking, cleaning, and picking up prescriptions. I wasn’t used to that kind of responsibility,” says Castro, now 33 and a pharmacy technician in Mabank, TX. “She didn’t want to be a burden, but there were days when she couldn’t walk from the bedroom to the bathroom by herself. It was really difficult for both of us.”
Roles Redefined
Castro’s experience isn’t uncommon among caregivers. Many experience changing dynamics in their relationship when a loved one is handed a lupus diagnosis. “You have this additional role as caregiver, and that could change your relationship,” says Gail Hunt, president and CEO of the National Alliance for Caregiving.

Such changes can be uncomfortable for both the caregiver and the person with lupus, particularly when the transition involves taking on additional and sometimes nontraditional roles.

Keeley Moss is a 26-year-old cosmetologist in Franklin, LA, whose mom was diagnosed with lupus seven years ago. Before the diagnosis, Moss’ mother, Lisa, was in complete charge of the household and took care of the whole family. “Now, all she wants to do is stay in bed,” says Moss, who manages the household on her own. “Sometimes, she can’t even do simple things like run her own bath water.”

Even though she’s often exhausted, Moss does it all without complaint. “I realize it’s just as much of a struggle for my mom as it is for me,” she says. “My job is to make life as normal as possible for her.”
Communicating in New Way
It’s not uncommon for parents to hold back information about how they’re feeling, physically and emotionally, because they’re worried about burdening their children, explains Joni Aldrich, author of Understanding With Compassion: Help for Loved Ones and Caregivers of a Brain Illness Patient. Trouble is, that information is critical to providing the best care for the person with lupus.

The key to managing these changing roles? Communication. The goal is to make sure the care receiver is honest with the caregiver about their symptoms, pain and illness, Aldrich says. Ask questions and be patient, but firm, as you await their responses. “Carefully explain why their cooperation is needed and what each question will tell you,” says Aldrich. “If you have to repeat the reasons, use the exact same phrasing each time so it registers in their brain.” Still no luck? Ask siblings and other family members to help or turn to medical workers who can relay the information more effectively.

According to Aldrich, caregivers and care receivers alike do best when there’s some sense of normalcy. That means allowing the person with lupus to take on any roles and responsibilities he or she can manage. “Don’t treat the care receivers like invalids,” she says. “Encourage them to do as much as they can, perhaps by giving them simple tasks that will make them feel useful.”

Even though Castro’s mother couldn’t do much physical work, Castro would encourage her mom to do a load of laundry from time to time or tidy up the kitchen. “I would also encourage her to go to shopping with my aunt if she was feeling up to it, or I’d ask her to join me for a movie.”
Form a Support System
Caregivers shouldn’t try to tackle their new role solo. “Early in the process, when you find out your loved one has lupus, make a list of local resources, and people who can help you when you’re in a pinch,” Aldrich says. In many cases, the people on that list will be other family members: kids, siblings, aunts, uncles, even distant cousins.

When Rick Lyons’ wife, Lori, was diagnosed with lupus in 1996, her symptoms were fairly mild at first. She struggled with skin problems, migraines, and heat sensitivity, but she was able to maintain a full-time job and care for their three sons. But in 2004, Lori was hospitalized for severe fatigue, and the couple knew roles around the house would change.

“She had to leave her job, and there came days when she couldn’t work around the house, either. Sometimes she couldn’t even make a sandwich,” says Lyons. What’s worse, Lori’s illness hit when two of their boys were heading off to college. “We lost our house and battled for two years to get Lori approved for Social Security disability income,” Rick says. Without Lori’s income, the couple couldn’t afford their mortgage and other bills and eventually filed for bankruptcy.

During that time, their youngest son, Mike, who was 18 at the time and living at home, stepped in. “He was a huge help,” says Rick. “He went to the store for us, cooked us dinner, and did everything he could to make her laugh.”

Mike, now 24, began collecting puppets and would entertain his mom with them, and, when she was up for it, he would take her to the store. That’s when their dark sense of humor kicked in. “She would drive a motorized cart, and he would push a regular cart,” Rick says. “They liked pretending like they didn’t know each other, and then he would be rude to her while she was in the chair—run into her with his cart, for example—to see what the other shoppers would do.”

While family members can be a great resource, it’s also important for caregivers to take advantage of other support services, Hunt says. “Investigate the options available for you at your workplace; for example, ask your supervisor if you can telecommute, or take a leave of absence, or use flex time for an extended vacation. Also, find out what federal assistance programs are available to you.” If your parent, spouse, or a dependent child is affected, you may qualify for the Family Medical Leave Act.

Don’t forget the treasure trove of information online. Not only can you identify support groups, respite care, and caregiver organizations, but online you can also connect with other caregivers, ask questions, and develop additional support networks. And don’t be afraid to join a support group or get counseling if you need it. Counseling is available from many sources, including religious facilities, medical centers, and community centers. The Lupus Foundation of America (LFA) health educators can also offer resources and suggestions for counseling services; call them toll-free at (800) 558-0121.

“A lot of people don’t take advantage of counseling,” says Aldrich. “There’s still a stigma attached to it, and some people don’t want to discuss personal issues with strangers.” But Aldrich stresses that asking for help to develop some life balance does not make you weak. In fact, she says, “working through such an emotional upheaval will make you a stronger, better person.”

Today, the Lyons family is back on its feet, enjoying what Rick calls a “good period,” one of the longest Lori has had in years. “You have to be able to laugh and have fun,” says Lyons. “We didn’t want to live in a bubble, so we never avoided any family get-togethers, even if we knew Lori would be in bed for the next three days. For us, it is all about making the good times even better.” Today, the two often sit outside watching the birds while they drink their coffee, taking pleasure in the little things they once took for granted.
There is a danger, though, that caregivers can become so busy and overwhelmed that they push their own health aside. They neglect themselves, focusing instead on the person they’re caring for. “Caregivers may know all about the latest clinical trials for people with lupus, but they don’t think about the toll caregiving is taking on their own health,” Hunt says. “They tend to neglect about routine health issues; they don’t get breast or prostate exams or take flu shots.”

And consider this: Taking care of yourself is also good for the loved one you are helping. In many cases, the person with lupus is ready for the caregiver to get out of the house. “It’s a good break for both parties,” says Aldrich. “You can’t be with someone 24/7, especially in a high-stress situation, without it beginning to wear on you.”

Stephanie Agee’s daughter Kristin, 29, and son James, 24, both have lupus and live with her. Currently, her daughter’s symptoms are more severe. But Agee, 53, of North Las Vegas, NV, makes a point of participating in a bowling league twice a week. “You just have to find the time, and then plan for when you’re away,” says Agee, who makes sure someone is with her daughter on the days she bowls. “You have to allow yourself to enjoy whatever moments you do have, even if it’s just five minutes.”

Without focusing on their own care, caregivers can suffer burnout, erupt in bursts of anger, or suffer nervous breakdowns. So leave the guilt behind. Eat properly, schedule your own doctor’s appointments, and set aside time for a massage or meditation. Most of all, get some exercise. Studies show that regular exercise is not only good for your body, but that it also improves your emotional health and well-being. Researchers from Northern Arizona University found that just 10 minutes of moderate exercise, such as a brisk stroll or a short bike ride, improves your mood and re-energizes you.

Plus, making time for yourself beats the alternative: Getting sick. Experts agree it’s not uncommon for caregivers to work themselves sick while taking care of their loved ones. Lyons, Castro, and Moss all struggled with their own health issues while still trying to act as caregivers. “When I was sick, my mom was trying to take care of me, and I felt completely guilty,” Castro says. “I was so concerned about her that I didn’t really care what happened to me.”

Moss had a similar experience when she was diagnosed with fibromyalgia two years ago. At times she feels too achy to move, much less keep up with her responsibilities as a caregiver and her own duties. That’s why it’s critical to have a list of people you can turn to. “When people want to help, let them help,” Moss says. For example, Moss shares the responsibility of driving her mom to medical appointments with her dad and brother. “We try to rotate so I can get a bit of a break,” she says.
Facing the Empty Nest
Facing the loss of a loved one is always difficult, but if you’re the primary caregiver, the emotional blow can be even greater. “When your ‘shift’ as a caregiver is over, loneliness, grief, and confusion may replace the feelings of being needed,” says Aldrich. “Suddenly things are too quiet and you’re not being pulled in three different directions. It can be very hard to fill the emptiness that’s left behind when you’re no longer devoting your time and energy to daily caregiving.”

Castro knows those feelings all too well. “My mom was always there, and we were always together,” she says. “And for 10 years, I was her primary caregiver.”

On June 1, 2010, Castro’s mother passed away from complications of lupus. After her mother died, Castro found herself wanting to be around people—friends, family, anyone. So she packed up the car and took a road trip with her best friend. She spent a lot of time with her aunt and uncle, and she tried to adjust slowly to a life without her mom.

“You’re not only losing a spouse or a sister or a mother, you’re also losing a daily way of life and the time you spent together,” says Aldrich. “That’s an emotional double whammy.”

There may be many tasks to distract you in those initial days and weeks following a loved one’s death. But once the relatives are gone, former caregivers will need to create a new normal. Experts agree it’s important for caregivers to take it one step at a time to re-establish their footing. Caregivers should take some time for themselves before jumping into a new hobby or a new career. Some former caregivers find a sense of purpose by getting involved with the their local LFA chapter, supporting other caregivers, or volunteering their time to a charity. Such activities can provide a sense of accomplishment at a time when they’re feeling lost and alone.

In April 2011, Castro and several of her family members participated in a fundraising walk for the LFA, North Texas Chapter. The group agreed to make it an annual tradition in honor of Castro’s mom. “Everyone has a cause or charity they’re partial to, and lupus is going to be mine,” says Castro. “I feel like I’m still trying to adjust to life without Mom. I just have to take one day at a time.”

While caregiving can be physically and emotionally demanding, there are rewards, too. As a caregiver, Moss has come to discover that she’s giving herself the greatest gift. “I’m so close to my mom,” she says. “I feel like I have to spend every moment with her while I still can.”

Caregiving Resources


  1. Great article for those who are new at supporting a loved one with Lupus. I know from my own work that support is hard for some who are new to these types of issues (and even some who are not new to this) as they do not understand how to just BE there for that person. Your article will help many in this type of situation. Great job.

  2. Paul, thank you so much for taking the time to read and comment on my post. I know it must be so hard to see a loved one suffer and take on so much physically and emotionally.