Tag Archives: Caregiving

Hope for Families with a Child with Autism: Advice for Parents

A recent study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder. (1) In the United States, most individuals are familiar with the disorder because of the high likelihood that they know someone with autism. The stress of any special needs diagnosis is difficult for a family, and those with autism have unique struggles. In order to identify resources available within our Catholic Church when faced with a diagnosis of autism, we can look to the words of our Holy Father Pope Francis:

When there is no human hope, there is that hope that carries us forward, humble, simple—but it gives a joy, at times a great joy, at times only of peace, but the security that hope does not disappoint: hope doesn’t disappoint (Morning Meditation, 3.17.16, emphasis added).

When I was told that my son was diagnosed with autism, I was the only adult in the room besides the doctor; my son and his two older sisters, ages 5 and 7, were there too. Our son was age three at the time, and his father was traveling out of town on business. I will never forget the whirlwind of thoughts, feelings, and sense of fear that day as I stood in the doctor’s office.

Now, twelve years later, I can look back at those days with the benefit of hindsight and more importantly, grace. Despite the many challenges, and at times heartbreaking pain, I cannot imagine life without my Joey. That fear has been replaced by hope.

I have learned several lessons since that day, and each day brings a new lesson in how to help him grow. Each day also brings new insight for me as a parent, including where I need my own personal and spiritual growth.

The wisdom in our communion of saints is a resource that every Catholic can rely on when working with a child who has special needs. Three themes from our Holy Father’s ministry, which he emphasizes in homilies and in his writing, suggest a three-pronged approach for families with a child on the autism spectrum. Let’s look at each one:

Progress Forward

Many times with a child with autism, it can seem like one step forward, two steps back. The challenge is to have a long-term perspective, recognizing that the small steps you are taking now to provide early intervention will have a future payoff. Because autism often accompanies co-morbidities like anxiety, it can be difficult to manage your own natural worry as a parent, as well as that of your child. Make sure that every so often you take time to review the progress your child has made, and to express your appreciation for all of his or her hard work. It is also important to pat yourself on the back from time to time, because being a parent of a child with autism can be difficult and lonely. It can help to find local support groups in your area so you can share resources and support.

Humility

Frequently, mothers think that they are the only one who can meet their child’s needs. While it is important to recognize the mother’s role, both father and mother have to acknowledge that they cannot meet their child’s needs alone. Humility shows us that we have to rely on others, whether that be hiring in-home therapists, seeking private grant funding or finding other ways to get the support that you need as a family to successfully support your child with his or her diagnosis.

Simplicity

Pope Francis is noted for his simplicity as well as his humility. Sometimes, when a child with autism has an IEP (Individualized Education Program), a treatment plan with multiple medications, therapies both inside and outside the home, as well as the need for structural home modifications, the needs are so great that it can be hard for families to prioritize what is most important. Simplicity means focusing on the most important needs of the child right now, in this moment, and enjoying the many wonderful moments of joy that the child brings. I have chronicled the many funny things that my son has said to me over the years, which have not only made me laugh out loud in the moment but are something I treasure years later as I re-read them.

For families who have a child on the autism spectrum, don’t give up! There is hope, and lessons learned over time and from others can make the journey easier.

(1) https://www.autismspeaks.org/what-autism/prevalence

About the author
Ann O’Keeffe Rodgers is a wife, mother and advocate for those with autism. She lives in Jacksonville, Florida, and is CEO of Hope Springs Florida, a vacation respite home designed for working-class families with a child with autism. Ann can be reached at rodgers_2244@hotmail.com.

A Special Family: Shaped by Down Syndrome, Grief and Grace

By the time our son Stephen turned seven, we were hoping to adopt another child. To our three birth children, Guy (8), Stephen (7), and Matthew (5), we had already added David (3) and Danny, whose Down syndrome no longer seemed remarkable. He had passed the ripe old age of one and, although he was developing more slowly than our four older boys, he was making strides at his own pace. Other than a small PDA (a patent ductus arteriosusa or small hole in his heart) and the croup which scared us all half to death, he was in good shape physically. (The hole eventually closed, and he outgrew the croup, thank God!) Except for the time I fed him too many carrots and turned his skin orange, we were doing a pretty good job of parenting. Danny had grown into being just another member of the family, and we felt that we could care for one more baby with special needs. Down syndrome did not seem like a disability. It was a challenge which early intervention services helped us to meet.

The following spring, we met John Francis in The New York Foundling Hospital. He was four months old. The first time I held him, he looked up at me and smiled. (I refuse to believe it was gas!) I was a sucker for cute babies, and his little face won me over. Like Danny, John Francis had a small PDA. This was not an issue, but the colostomy bag attached to his little abdomen did present some problems. I had to learn to care for it before The Foundling would release him to us, and that made me nervous. But he had that adorable little smile and I soon managed to clean out his bag, “like a pro,” one of the nurses said, as though his guardian angel was guiding my hands. Looking back now, I think perhaps he was!

Our first night at home, I had a slippery little mess on my unskilled hands. I think that was the only time I wondered about the wisdom of our decision! My sister, who was present for my struggles and frustrations, suggested that I use a meat baster to flush out his little bag. That solved my biggest problem and I continued to use that baster until his colostomy was reversed by the time he was two.

The other boys did not like the idea of the colostomy bag, although it was covered up and soon became a non-issue. They were also against us naming the baby “Francis.” They thought the kids in the neighborhood would make fun of him. I had to laugh at that. Here was this little Chinese baby with Down syndrome and a colostomy bag and they were worried about kids making fun of his name! But we compromised on that, and named him John Francis instead. To my knowledge no one has ever made fun of him or of his name!

After his slippery beginning, John Francis found himself the littlest child in a busy household. We had decided, even before adopting Danny, that our family life would not change because of the addition of children with special needs. We went to Church, took them all to McDonald’s, went shopping and on vacation. Other than toting more luggage, along with the usual baby paraphernalia plus that necessary baster, we managed. My husband took the older boys to their sporting practices and events. I stayed home with the little ones, and joined him when I could. We were a typical family, busy in the chaos of everyday life.

Russo 2 children

All of the boys got along, but Stephen took a special interest in John Francis. They were “roomies” and Stephen seemed happiest when he was holding the baby in the crook of his arm. I can still see the look of pure joy on his face as he went about the house toting John Francis with him. They went to bed and crib, as usual, on the night of February 12, 1990, but Stephen came out of his room about 10 p.m. in distress. He had a terrible headache and could not sleep. I gave him some pain reliever and put him back to bed. I could soon see that this was not an ordinary headache. We called for an ambulance and, by 3 a.m. the following morning, Stephen was dead. His undetected brain aneurism had burst suddenly, without any warning. That is what made us a “special family”: grief, not Down syndrome.

A family does not get over the death of a child. As time went on, we began to function again, but it was very difficult. The older boys mourned Stephen quietly, and my husband, Tony, sank into a deep depression. The laundry did not stop, the house did not stay clean, and the meals did not cook themselves. I managed to get through some very difficult days bearing the brunt of a loss which nearly paralyzed us all. Losing Stephen was the greatest challenge of our lives.

I knew that, in order for me to heal, I had to give myself over to something greater than my loss. It seems incredible to me now that my husband, Tony, went along with my desire to find another baby, but he did. We began to actively pursue another adoption and were led back to The New York Foundling Hospital the following year.

A baby girl with Down syndrome had been born in January of 1991. She had a large hole in her heart and lay, we were told, like a little blue doll. The agency did not want us to meet her until after her surgery. They were afraid she might not survive, and did not want us to face what would be another devastating loss. A lot of prayers were sent up to heaven during the next few months! After the surgery, we were finally called in to meet her.

Now this little bundle was a challenge of a different sort! She had not developed the ability to suck and swallow. On the positive side, her heart had healed well and her prognosis was good. I faced the daunting task of putting a tube down her nose into her tummy four times a day so that she would be able to get the nourishment she needed to thrive. I was to do that after I coaxed her to drink from a bottle, something she never quite mastered. I did not know if I was up to this task, this risk of giving our hearts to another child, at all.

After we met Maria Grace, I went to church. By then Stephen had been gone a year and a half. While sitting in the back of my parish church, I looked up at the altar, praying for guidance. There, my soul very clearly saw Stephen, holding a little baby out to me in his outstretched arms. It was as if he were offering me the gift of life. How could I reject it?

Again, angel hands seemed to guide my own as I learned to feed Maria Grace. We brought her home by the end of that week, another China doll, when she was seven months old and weighed less than eleven pounds. Matthew, our youngest birth son, had taken over Stephen’s place as “roomie” and chief holder of John Francis. I was able to devote my time to the baby’s careRusso 3 children resized

Our children are now grown. Our oldest son, Guy, works in a school with a boy who has Autism. He hopes to teach full time in September. Matthew worked in a Day Program with adults with special needs for three years and is looking forward to teaching Social Studies in the fall. David was a “Buddy” with United Cerebral Palsy and also “buddied” while he served in the army. He will graduate from college this May. Danny and John Francis both go to work daily in Hub Sites, gathering places from which adults with special needs go out to serve as volunteers in the community. Maria Grace also volunteers at a Hub Site. This only daughter of mine has grown into a confident 23-year-old who has the ability to keep us all in our places. Even the dogs! Down syndrome has not been a disability for us. It has been, instead, the lens through which we, my husband and I and all of our children, have learned to love each other. You can see our story on YouTube at “What to Expect When You’re Expecting a Baby with Down Syndrome”. I hope that the smiling faces it contains suggest that Down syndrome is a gift, like life itself.

How has it been raising a family in which three members have Down syndrome? It has been a gift to treasure – and to share!

A Lesson In Love From Our Dying Son

In the fall of 2011, my husband Patrick and I had been married eight years and our family was rapidly growing. Our oldest child had just turned six and we were expecting our fifth child in December. John Paul was born on December 6, 2011. We knew immediately that something was very wrong. The delivery itself was traumatic, during which his arm was broken. When he was finally delivered, he didn’t make a sound. He couldn’t breathe. He was barely moving. He was whisked away to the neonatal intensive care unit. In the days and weeks that followed, we gradually started to understand the severity of John Paul’s condition. When he was 5 weeks old, he was diagnosed with Spinal Muscular Atrophy (SMA). We learned that SMA was a genetic, progressive and terminal neuromuscular disorder. Gradually, every muscle in John Paul’s body would weaken and eventually waste away. Usually death is caused by complications from a common cold because of respiratory weakness. You can imagine how we felt being told that our son would die from complications of a common cold, knowing that we had four children at home, several of whom were not yet adept at covering their mouth and nose when they sneezed or coughed.

Of course, Pat and I were devastated. We were trying to wrap our heads and hearts around the reality that confronted us. At the same time, we were also quickly falling desperately in love with our son. We saw his first smiles and he could even hold my finger in his hand. During our time in the NICU, it was a rollercoaster of singing lullabies and whispering sweet nothings one minute and the next using emergency procedures to bring his oxygen saturation levels back to normal because he couldn’t clear his airway the way most people do by swallowing or coughing.

We had gleaned some hope from families that we had been put in contact with who had children with the same diagnosis. They were living at home with their families, growing, learning and loving despite their weak bodies and many medical issues. In many cases, they were living way past what doctors were anticipating. We desperately wanted that for JP. We wanted our other kids to get to know their new brother and we wanted JP to feel the love and joy of a home and his family.

When he was 7 weeks old, JP had surgery for a G-tube, to enable us to feed him with a feeding pump and a tracheostomy because he required constant breathing support from a ventilator. When he was 3 months old, we brought him home.

It was beautiful to see the other kids interacting with him. Joey learned to use the suction machine and would practice reading to him, Liam loved learning to do his physical therapy exercises with him, Madie danced for him, and Ben would kiss him and play peek-a-boo. At every meal they would fight over whose turn it was to give him his medicine or hook up his bag of formula to his g-tube port. This was our “new normal” and we loved it.

We also had some pretty major struggles in getting adequate nursing care and ended up doing much of his 24-hour care ourselves, taking shifts through the night on weekends, frequently jumping from bed to assist a nurse in clearing his airway and help him recover his oxygen saturations to normal levels, taking him to appointments with just about every specialist you could name. He was hospitalized several times for infections. We also observed him quickly losing strength. Within a few months of his homecoming, he had lost the ability to smile, what little movement he had in his fingers disappeared and he was increasingly losing eye control.

Having a child who was so medically fragile introduced new challenges to our marriage as well. Never before was communication so critical. In some ways, it was easier to understand where the other was coming from. We were more sympathetic and patient because we were both going through the same sleep deprivation, emotional exhaustion, and tension of caring for a child whose life was not a given from one moment to the next. We were more unified and accommodating, and we literally knew where the other was at any given moment. John Paul gave us opportunities to love each other in new ways, like delaying waking the other when it was time for the 2 a.m. shift change or making sure the other got “snuggle time” with JP. We were reporting to each other when we needed to step away from John Paul’s side so that the other was “on call.” We also literally didn’t have the emotional energy for petty fighting. Did both of us snap sometimes in exhaustion, stress or frustration? Absolutely, but neither of us put that much weight on it. We both knew we were as vulnerable to the same weaknesses. Things that weren’t critical to the mission were quickly forgotten.

In other areas, our communication was more difficult than it ever had been. We had to make decisions about the future of our family and about how to do what was best for our son who was on life support, and we didn’t always agree. Little by little we learned that even when we disagreed quite strongly about the course we felt our family should take, we had to respect and trust the intentions and heart of the other. Resolutions were not always made overnight. Ultimately, because we both truly did have the interest of John Paul and the entire family in the forefront, when action needed to be taken, we were able to see eye to eye with time and prayer.

In February of 2013, we learned that much of John Paul’s brain had wasted. There were also new concerns that he had developed a type of nerve cancer. With a lot of prayer and peace, we discerned that God was calling John Paul home. On February 20, 2013, our parish priest said a Mass in our family room and, surrounded by family and songs of praise, JP joined the saints in heaven.

It has been a little over a year since John Paul died. Pat and I are learning how to support each other in the different ways we grieve. We are learning to be better listeners and better sharers. There is a deeper bond between us now. I can only compare it to what I imagine the bond is like between two soldiers who are fighting in the trenches together. I say “fighting” because even though John Paul isn’t with us now, the war is not over yet. It won’t be until we are both reunited with our little boy. There are plenty of battles left to fight and only God knows what they will involve. They may include more children with SMA. They may include more healthy children with other struggles. They will include the challenge of helping our children get to heaven.

Many times in the last two years, it took getting to that breaking point, whether it was feeling like getting adequate nursing care was impossible, receiving yet another call with bad test results from a doctor, or snapping at my husband in exhaustion, before I surrendered the circumstances to God. Ultimately, God did work everything out, but had I trusted Him with it sooner, perhaps I could have appreciated His hand in those moments rather than in retrospect. There are many statistics about the damage the death of a child can do to a marriage. Sadly, I don’t doubt their validity but it is a number that is unnecessarily high. When God gives us more than we can handle, it is because He wants us to entrust it to Him, let Him take care of it. We can only fail if we try to do it alone. Of course the myth is in thinking that we can do anything without God. Whether it is sharing the last piece of cake or burying a one year old son, we constantly rely on the grace that God gives us in our vocation to get our spouse and children to heaven.

About the author 
Elena Kilner is the author of Letters to John Paul: A Mother Discovers God’s Love in Her Suffering Child, http://mooringspress.com/letterstojohnpaul.html.

About the photo
Patrick and Elena Kilner with their children, used with permission.

Till Death Do Us Part

The following is an excerpt from the book It Is Well: Life in the Storm by Chris Faddis, shared with permission from the author and Carmel Communications. In his book, Chris writes about finding out on Easter Sunday 2011 that his wife Angela had terminal colon cancer. She died 17 months later at age 32, leaving behind her grieving husband and two young children. It Is Well is a story of grief, love, loss, and faith.

To purchase It Is Well, please visit http://itiswellbook.com.

I sat with Angela as much as I could, holding her hand, playing music and praying many prayers, yet I would find myself feeling very restless and anxious. There is no more helpless feeling than sitting by a loved one’s side waiting for them to die. I felt as
 if I should be doing something. To move away from the instincts
 of trying to help her live, of doing everything I could to fight
 this disease, towards suddenly giving up was painful and heart wrenching. I had discerned our decision to move Angela home with hospice care with the help of very knowledgeable friends who walked me through the process of making this decision. It was clear that Angela’s body was in the pre-active dying process, and that there really was nothing we could do to stop it. One friend posed the decision this way: “At some point it is time to surrender to God and if she is in the pre-active dying process, it might be that time to accept death.”

I was confident that we had made the right choice, but as 
I sat in her room, I felt helpless and useless. I would rethink my decisions and question myself. “Am I giving up too soon?” This wasn’t helped, of course, by a few well-meaning people who voiced that they thought I was giving up hope. So in my restlessness and uneasiness I would pace, find things to do and find myself getting frustrated. As I would come back into the room, I would look at Angela’s peaceful face, and I would realize that my only job was to just be present to her and to wait patiently with her for death. When I finally surrendered to this reality, that my only job was to just be present to her, I felt an incredible peace.

hands

Chris Faddis holding his wife Angela’s hand

One particular afternoon, just a few days before she died, I sat with Angela and held her hand as I read to her. She would occasionally look up and listen or smile. I would tell her how much I loved and cherished her and she would respond with a faint response. At one point she whispered, “I always knew you would cherish me to the end.” As she fell back to sleep, I looked down at our hands and her ring was missing. It had fallen off several times, as Angela was so frail that it was now too large for her finger. She had placed it on the table next to her bed. I picked up the ring
and placed it on her finger and held her hand again. I gazed upon our hands, reflecting on that ring and what it symbolized, on our hands and the symbolism of husband and wife walking hand in hand through life. I thought about the first time we held hands. It was on our first date to Cirque du Soleil. At one point Angela had moved her hand near mine and then gently touched my hand. I took her hand till the crowd erupted in applause and a standing ovation. Angela never admitted to holding my hand that night. She would say, “I did not hold your hand that night. I wasn’t ready.” 
I would laugh and remind her of the many things she did during that time of friendship – when she supposedly did not want to date yet – like lean on me, touch my hand, and even press her cheek against mine for a long time, as if to wait for a kiss. She would laugh at me and say, “Whatever, I was not that forward.” I then thought about when we did finally hold hands after we were “officially” dating. There is something remarkable about holding hands when you are falling in love.

Many people say it’s in the kiss that you know, or it’s love at first sight; I tend to think it’s in the hands. Holding hands was not always romantic, but holding hands was our constant connection to one another. Even when in an argument or a difficult conversation, we would often hold hands. When Angela was struggling with depression, I held her hands many times just to calm her, to soothe her, to help her feel supported. Angela, too, would hold my hand when I was having a hard day or down about my
job situation or our financial hurdles. A simple touch of her hand would instantly soothe me.

Through Angela’s cancer journey, holding hands had become our primary form of intimacy. Whether Angela was receiving chemotherapy, waiting for surgery or simply resting at home, we would spend lots of time holding hands, talking, praying and simply being present. As I held her hand during this seventeen-month journey, I would often squeeze and hold her hand very tight as I thought about losing her, as if I could somehow hold her tight enough to keep her from dying. Now sitting in our room as she lie in wait for death, holding her hand was literally all I had left. She could hardly speak or even acknowledge my words; I simply had to hold her hand to communicate my love and to be sure she knew she was not alone. Indeed, I would be there till the end.

As I thought about her hands, I also thought about that ring, the one I gave her as I asked her to be my bride and the ring that stood as a symbol of this life-long Sacrament of Marriage. With that ring came our promise to love one another fully and completely until death came for one of us. The wedding ring speaks of permanence, of commitment, of an unbreakable bond between a husband and wife. Yet that ring could not bind her any longer; it could not keep her from dying, and it certainly could not keep her from heaven.

As I sat in this moment, I wanted to capture our hands one last time. I took a picture that I later shared. It is the image of us holding hands with Angela’s ring as the focal point of the image.
 A week or so earlier I had verbally told Angela that she was free to go home. My words on that day were, “You took my hand and you have loved me well. When Jesus comes and offers you his hand, you are free to go.” After taking the picture of our hands I felt I should say those words again. So I wrote them down and then read them to Angela:

“Till Death”

As if I could keep you longer, I placed this ring back on your finger today. It had fallen off a few times.

Oh, that this ring could keep you here longer. It is a mark of our commitment; it is my promise to love you with my whole heart, and yet there is a love greater than mine that will take you soon. How could this mere piece of gold compare to the love of God, which loves you completely, wholly, and perfectly?

It cannot, so I will hold your hand a little while longer. I will keep putting this ring back on your finger. But when the time comes and He asks you for your hand, you are free to go. Go to that perfect love which makes all things new. Go and be whole again. For now, till death do we part.

Illness

Many kinds of illness- physical, mental and emotional- can impact a marriage. They range from the occasional cold, to an unexpected accident, to chronic or terminal illness.

Here we consider long term or chronic illnesses, and serious conditions such as cancer, loss of a limb, diabetes, and life- altering disabilities. All of these test the “in sickness and in health” part of the couple’s marriage vow. Illness, especially chronic illness, changes the relationship with spouse, family, friends, social network, and God. Illness can bring out the best – and sometimes the worst – in both spouses.

A long or severe illness is usually a crisis- a turning point that can lead to ruin or renewal. A chronic or life-threatening illness creates a demand for a “new normalcy.” Not only do familiar daily patterns change, but also your expectations of how you will live, love, and share a mutual life. There is no going back to the way things were – only a going forward. At times it can feel like a roller coaster ride from hope to despair and back to hope. That’s normal. In addition to dealing with the illness itself, other issues that couples need to address include finances, ability to work, lifestyle, intimacy, and emotional and practical support for everyday life.

Dealing with the illness

This starts with understanding your illness and accessing the best medical treatment possible. Many people turn to the internet for assistance. This can be both a blessing and a curse. Which websites offer reliable help? How can you distinguish valid medical information from advertisements? See the websites below for a start. It’s crucial to have a strong network of support. Initially, many people want to help by bringing food, running errands, visiting, calling, and praying. As time goes on, however, many do not know how to give sustained help. The person with the illness and the caregiver(s) may fear asking too much or too often.

Suggestions

  • Keep building your support networks as you age. Make sure you ask many people who can give at least a little time rather than depending on one or two people to do it all. Draw from church groups, neighbors, friends, relatives, community support, and support groups of persons with similar illnesses. Try to have at least five good support friends, or more, to insure that one will usually be available to lend a hand. Depending too much on the same group of people can burn out the entire group.
  • Develop a mutually respectful relationship with your doctor(s). The less stress you feel about your medical care and frustration of dealing with the system, the better your chances for recovery.
  • The primary caregiver needs care too. If you are the caregiver, treat yourself with as much kindness and care as you do your ill spouse.
  • Take advantage of support groups for people with your illness. Look into partnering with a “patient navigator” to help you move through the medical system. Hospitals often sponsor support groups or can link you with a mentor.

Financial stressors

Some couples are blessed with insurance that covers expensive treatments when illness strikes. It may not cover lost income, however. When a wage earner loses a job, everything changes. You may need to draw down your savings and cultivate a simpler lifestyle. The illness may affect the kind of job your spouse needs to get.

If a couple is younger (especially if you are still in the active parenting stage) the financial stressors can be even greater. Some couples use up their resources and need to declare bankruptcy or hope to qualify for Medicaid.

Suggestions

  • While you’re still well, consult with a person who understands the financial issues involved with chronic illness and disability. Make sure you have both a short term and long term plan.
  • If it’s too late for the “while you are well” suggestion, do it now and lean on the medical support services to guide you.

Work

The loss of a job has repercussions besides loss of income. Identity is closely tied to one’s work. Work helps us feel productive, important, and useful. We may need to grieve the loss of this identity. Loss of employment also takes away important social networks. The caregiver may have to take on additional employment or household responsibilities. These role reversals can be difficult for both partners. Few people like depend on another for daily care. The ill spouse may feel guilty about burdening the caregiving spouse. Self-esteem takes a hit. Meanwhile, as generous and loving as the caregiver is, this “job” is time-consuming and draining.

Lifestyle and Recreation

The caregiver might have to do things that he or she had previously not done. The illness can become the focus of your life and everything can revolve around it: researching it, getting to/from treatment, dealing with side effects, doctor visits and support groups. Even cooking can be a challenge if the ill person needs a special diet or needs to be coaxed to eat. Recreational pursuits that both of you previously enjoyed may become physically impossible. Travel may be more difficult. This doesn’t mean you don’t have fun; you just have to be creative about finding new interests that fit changing physical abilities. Recreation may become more passive such as watching TV, movies, or going out to eat. The caregiver may need solo recreation such as working in the garden or going out with friends.

Suggestions

  • Careful planning can help couples work out treatment schedules, but make peace with the reality that the future is not knowable or predictable.
  • Keep a sense of humor. Make sure that each day includes some type of play and spiritual activity.
  • Do not let the illness become the primary organizing principle of your life, even though recreation might not be what you’re used to. Persons who do the best in treatment are those who continue to play, take short vacations or day trips, and continue to socialize to the extent they are able.

Intimacy and sex

Physical limitations, emotional and physical fatigue, financial pressures, and lack of time can all affect intimacy and lovemaking. Snuggling may replace sexual intercourse. Sometimes, even touching or holding is difficult. Many chronically ill people report that although sexual intercourse is limited or non-existent, emotional and spiritual closeness increases because of the shared trauma. Look for new ways to express your love so that you can sustain a caring, growing relationship.

Mental Illness

A spouse with mental illness presents an even more complicated situation. The disease is harder to “see” and often caries a stigma. Relative and friends may not be compassionate. It can be hard for the caregiver if the spouse is unwilling to accept help and follow treatment. The mentally ill person may show little gratitude for the efforts of the caregiving spouse. In this situation, a support group with an effective counselor is a must.

RESOURCES:

Hanks, Jerry and de Cordova-Hanks, Bobbie. Tears of Joy. Infinity Publishing, 2006.

Stephen Ministries trains and organizes lay people to provide one-to-one Christian care to hurting people in a faith based setting.

The author acknowledges the Durham, NC Cancer Support Group for its help.

For Further Reading:

Resources for Caregivers:

  • Nourish for Caregivers – a faith-based program designed to meet the practical, emotional and spiritual needs of family caregivers.

About the author
Susan Vogt is an author and speaker on marriage, parenting, and spirituality. Her website is SusanVogt.net.

Little Miracles

Andrew and Anna, married for nearly 10 years, face one of the biggest challenges that any marriage can confront. In June 2006 their daughter Rose was born with DiGeorge’s syndrome, a serious genetic disorder caused by the deletion of a small part of a chromosome. Because the condition is rare – 1 in 4,000 – Rose’s prognosis is uncertain. Right now doctors are debating how to treat her heart and gastrointestinal abnormalities.

In the meantime, the couple’s life has turned upside down. They try to maintain some normalcy for their other children, ages 5 and 3 ½, even as they struggle to meet Rose’s medical needs. Constant medical procedures and midnight wake-up calls to give Rose her medication put a lot of strain on the family. Tempers get short and “the small stuff creeps up.” Much-needed breaks, such as leaving the children with a teenaged babysitter so that the couple can enjoy an evening out, have become impossible. Andrew and Anna know that marriages break up over these kinds of difficulties, and they are determined not to let that happen.

Friends, family and the Secular Franciscan Order offer understanding and practical support. Andrew finds that Pope John Paul II’s encyclical, The Christian Meaning of Human Suffering is helpful for people going through a situation like theirs. Andrew and Anna have a special devotion to Blessed Teresa of Calcutta.

In the face of such uncertainty, the graces of marriage keep Andrew and Anna going. They have learned to celebrate the “little miracles.” “Rose came home,” said Andrew. He and Anna believe that God entrusted Rose to them, and they know that God will be with them in whatever lies ahead.

In Sickness and In Health

We had been engaged for 13 months, with 22 days until the big day, when Matt, at age 23, was diagnosed with stage 4 lung cancer. We could never have predicted this, with no history in the family and no smoking, but it wasn’t necessary. God was in control, our souls were flooded with peace, and the last 10 months have been nothing less than miraculous.

Matt had major surgery before we headed home from D.C. to Texas for our wedding, and four days after the wedding he had a second operation. Matt came home with some pretty awesome scars and a definitive diagnosis of terminal lung cancer. In the midst of the challenge, the Body of Christ overwhelmed us with love, support and an overabundant dose of prayers.

Along with the diagnosis of lung cancer came questions of chemotherapy and babies. We wanted lots of children, as many as God would bless us with. Our doctors advised us differently. We were asked multiple times if we would like to put sperm in a sperm bank in case the chemotherapy made Matt infertile. Most people on chemotherapy become infertile, and when the therapy is finished there is a 50% chance that it will be permanent. With no discussion needed, we told the doctor this was not an option. One of my greatest longings has been to be a mother, and as it is presented so wonderfully in Psalm 21, “You have granted him his heart’s desire; you did not refuse the prayer of his lips.” On February 16th we found out that we were pregnant. Matt is still going through treatment, and the Lord is abundantly good.

We write this as an encouragement to those who face adversity in their marriage. We can’t express enough the graces that are reaped through the Sacrament. The Lord has granted us many spiritual friends who, though we have never met them, pray for us daily. Through the sacrament and these loving prayers we are able to take our lives one day at a time, not worrying about the things that are to come, but focusing on loving: today, right now, every minute.

When we took our vows on June 24, 2006 we meant every word we said: “I, Matthew, take you, Lucy, to be my wife. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.” And in turn: “I, Lucy, take you, Matthew, to be my husband. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.”

Caring for Children While You Care for Aging Parents

If you’re a member of the “sandwich generation,” taking care of your aging parent as well as your children, it’s hard to shake the feeling that if you focus on one generation you’re losing sight of the needs of the other.

It can help to remember that your taking care of your parent is good for your children, too. How so?

You’re right that your kids also make a sacrifice because you can’t be around as much as the they would like you to be and, most likely, they have to do more–become more responsible–because you can’t be there. (Maybe they have to make their own lunch to take to school. Or you can’t be a chaperone at some school event even though you were able to do that a year or so ago.)

Yes, in some ways a child is being deprived of what a parent might be able to give if he or she didn’t have caregiving obligations to an older family member (or to a spouse who is ill or to a child with special needs). From another perspective, Mom or Dad is giving something to that child or those children that he or she otherwise couldn’t give. We mean a front-row view of love in action without any possibility of mistaking the unchangeable fact that true love demands service and sacrifice.

Still . . . it can be a lot to put on little shoulders. All they may see at first glance is that Mom or Dad isn’t there (or is there but is exhausted from caregiving and holding down a job) and they miss not just what that parent does for them (nice meals, rides to practice and so on) but also that person himself or herself. They miss time spent together. With that in mind, here are a few suggestions if you’re taking care of an aging parent and your children:

  • Talk about caregiving at a time when neither you nor your child are tired and emotions are not running high.
  • Do something special with each child, one-on one.
  • Explain what it’s like to be a care-receiver, how it can be hard to accept help. Talk about why you’re taking care of Grandpa or Grandma and explain, in an age-appropriate way, what his or her condition is.
  • Work at establishing a link between your children and your parent. Let them have some time together.
  • Remember children can, in small ways, help with caregiving, too.
  • Teach what respectful care means and explain the difference between “dignity” and “dignified.” Yes, at times, a situation may be less than “dignified” but a person must be treated with dignity.
  • Remember to thank the child for making sacrifices and for helping you help your mother or father.

Article courtesy of www.youragingparent.com

Resources for Caregivers:

  • Nourish for Caregivers – a faith-based program designed to meet the practical, emotional and spiritual needs of family caregivers.

The Sandwich Generation

The “sandwich generation” is a good description. There’s pressure from both sides and sometimes it gets messy in the middle. That’s what it can feel like if you’re taking care of your children as well as your aging parent.

Add in a spouse and a job and it’s no wonder it often seems a twenty-four-hour day and seven-day week just aren’t enough for all you have to do.

Then, too, from the time all of us were little we were taught there is a right way and a wrong way to accomplish a task. Maybe your parent took care of Grandma or Grandpa. Your spouse took care of your mother- or father-in-law. Your friends or co-workers seem to be able to handle their situations. But you . . . .

When you realize you can’t do all the things you’re supposed to do–all the things other people have done or are doing–you feel inadequate and even guilty.

You think you’re letting everyone down. If you just worked a little harder, slept a little less, sacrificed a little more. . .

If you find yourself in that situation, or feel yourself sinking into it, these suggestions might help:

  • Remember there is no single right way to do this. Trying to exactly mimic what another person has done probably isn’t going to work. Each case is unique because the personalities and problems in each case are unique.
  • If you don’t take care of yourself–take time to eat, sleep, catch your breath and pray–you will burn out quickly and be of little use to anyone, including yourself. The situation in which you find yourself is not a sprint, it’s a marathon. Yes, someday it will end but that may be a long, long time from now. In the meantime, if you do not pace yourself, sometimes even pamper yourself, you won’t be able to keep going. That’s not because you’re weak, it’s because you’re human.
  • The big picture can look and feel overwhelming. Sometimes it helps to break it down into the many tiny pieces that make up the whole. What you have to do for your parent, your children, your spouse, your job and yourself. The lists may be long but somehow no single item is overpowering.
  • Prioritize your tasks. Making those lists helps. Obviously, getting Mom to her doctor’s appointment is more important than vacuuming her apartment.
  • Give away some of the low-priority duties. Someone else can be hired to do the apartment cleaning. Someone else–the bakery department at the local grocery store–can supply the brownies you’re supposed to send to the next Cub Scout den meeting.
  • Get support for yourself. Groups for caregivers and organizations that focus on your parent’s particular illness or condition can help you deal with what you are facing. Doctors, social workers and the Area Agency on Aging can give you local contacts.
  • Write it down: dates and schedules and all that information from doctors, therapists, pharmacists, teachers, coaches, your boss, your spouse, your kids . . . . There’s no way a person can remember all the things you need to remember.

It may seem the day is completely packed but if you jot down your own “to do” list, you may discover there’s half an hour free here or there. A little oasis like that gives you something to look forward to. It’s a short break to partially recharge your batteries before you have to go, go, go again.

Article courtesy of www.youragingparent.com

Resources for Caregivers:

  • Nourish for Caregivers – a faith-based program designed to meet the practical, emotional and spiritual needs of family caregivers.

When You’re Married to the Caregiver

If you’re the husband or wife of an adult child who is taking care of an aging parent, it can seem that no matter what you say or do, it’s the wrong thing.

Suddenly you may find yourself an outsider as the immediate family circle closes ranks.

You may feel tremendously frustrated about your powerlessness. You cannot make everything all right; you cannot stop the pain your spouse is feeling.

Here are a few suggestions to consider that may make this time easier:

  • Remember that the relationship you have with your in-laws is not the same as the one your husband or wife has. This is simply human nature. No matter how close you may have become to your mother- or father-in-law, your experience is not the same as your spouse’s. While you may feel the two of you are doing more than enough to help, your spouse may not feel that way at all.
  • Understand that every immediate family has its own little quirks–good or bad. Maybe Dad has always had a short fuse. Maybe Mom has never been able to relax if there was one speck of dust on one stick of furniture. Maybe family members never talk to one another, they yell. Maybe they never yell . . . or talk. Whatever those characteristics, they may be intensified under the present, stressful circumstances.
  • Don’t take it personally if you are suddenly outside the loop. Perhaps no one really wants to hear your opinion because this is a “family” matter. At the same time, you may very well be affected by the decisions being made by your spouse and the other siblings. It’s not uncommon that several sons will decide what’s best for Mom or Dad but it is the daughters-in-law who end up providing almost all the care. Then, too, the opposite may occur. Your spouse’s siblings are no help and so it is up to your spouse and you to do everything.
  • Know that sometimes you will become the target for your spouse’s emotions, including anger, fear, sadness, frustration and guilt. Again, try not to take it personally. Most likely it’s not really meant for you but for something else: the disease or medical problem that is taking the life of your spouse’s parent, the pain and, ultimately, death.
  • Remember that while it may seem this situation has been going on forever and it will never end, it is temporary. It will end.

In the meantime, you may feel somewhat neglected, but remember, your spouse is being pulled in many different directions: aging parent, you, the children, the job. This is a time when he or she especially needs your help and your understanding.

A spouse also needs to hear, “You’re doing a good job helping your parent but you can’t do everything.” It’s hard to hear that. It has to be said gently over and over again.

It can seem pretty obvious to you that your spouse has assumed a new role as caregiver to an aging parent. What you need to remember is that during this time, you, too, have a new, special and vital role as well: Taking care of the caregiver, supporting the caregiver, consoling the caregiver and loving the caregiver.

Article courtesy of www.youragingparent.com

Resources for Caregivers:

  • Nourish for Caregivers – a faith-based program designed to meet the practical, emotional and spiritual needs of family caregivers.