Emotional & Social Issues
Coping
Caring for a child with a fatal progressive neurological disease is an immense challenge which requires energy, ingenuity and all the coping skills one can muster. For many parents, as painful as the child's eventual death is, the various steps along the journey—from hearing the initial diagnosis to watching the child's inevitable decline—can be equally difficult.
It is probably true that you and those close to you will “never be the same” after going through this experience. It is also true that this does not have to be a solely negative change. Positive changes can and do result from extraordinary situations.
“Karen's life was far from normal in the number of her days or the extent of her abilities. Yet I have often said she introduced me to some of the most exceptional people I have ever known. They, and she, enriched my life in many ways.”
Who Takes Care Of The Caretaker When The Caretaker's Taking Care?
Respite Care: When A Few Hours Are Not Enough
Relating: You To Others And Others To You
When You're Feeling Overwhelmed
Who Takes Care Of The Caretaker When The Caretaker's Taking Care?
Probably the most important thing to remember when trying to cope with the care of your child is that you need to take care of yourself, too. Your sick child will not benefit from having an exhausted, burned-out parent; nor will the other members of your family.
So, what should you do? On a regular basis make some time just for YOU. It doesn't matter how much time you have. Even if it's just a few hours each week, getting away from your responsibilities at home will replenish your energies. Do something that you enjoy: go for a walk, go to a movie, have lunch with a friend. You will be amazed at how revitalized you will feel after such a simple activity, and how much better you'll be able to cope with your situation when you return.
| “Parenting a special-needs child can be, at times, an almost insurmountable challenge, and the strain of caring for the child at home is difficult for anyone, other than the parents, to realize.” |
Respite Care: When A Few Hours Are Not Enough
Sometimes, however, getting away for an hour or two is simply not enough. At these times, respite care is a good option to consider.
Generally, respite care is care provided for your child outside of your home for periods ranging from several days to several weeks. Today, some communities have a nursing facilities that can provide respite care, but it is best to check out the availability of these services before you actually need them. If you have the choice of more than one facility, select the place that “feels best” to you. If you are having difficulty in locating a nursing facility that offers respite care, contact your doctor, Visiting Nurse Association, local hospice, or other parents in your area.
And, if no formal facility exists in your community, don't lose heart. Several families have been able to develop “creative and informal” ways of finding respite care. We have heard of groups of families forming to help parents take care of their special children. Relatives may also be able to lend an occasional hand.
“Respite is like a shot of adrenalin. It allows you to regain your energy so that you can get through all of this.”
Having located a place or source for respite care, the next step is to make the transition as easy as possible for you and your child. One parent suggests writing a “Care Plan” to give to those who are temporarily caring for your child. This Plan might include: pertinent medical information; instructions regarding playing, feeding, comforting, sleeping; and helpful hints for solving specific problems. If possible, use a computer to record your Plan so that you can update it easily.
“When I first decided to leave David at a nursing home for extended respite, I knew that giving a report to a nurse and filling out some general information forms were not enough for me. I had to know that certain crucial information was accessible to all who cared for my child. Only then could I feel comfortable about leaving. With this in mind, I developed the Parent Written Care Plan.”
Relating: You To Others And Others To You
Many, if not most, relationships undergo a significant change as a result of the birth of a child with a progressive neurological disease. The reality is that caring for your sick child is an extremely time-consuming activity, and friends and family may not be able to understand the scope of the demands that have been placed on you. Many people may seem at a loss for words. You, too, may feel uncomfortable sharing what you and your child are going through. As a result, you may find yourself cut off from the support of others around you.
Experience shows, however, that families who stay involved with the outside world seem to fare better than those who isolate themselves. If at all possible, try to maintain your outside connections. Keep in mind that those around you may really want to help but simply may not know how or what to do. You will probably be able to sense who among your friends and family is able to be there for you; don't be afraid to reach out and give them a chance to help.
“Parenting a special-needs child can be, at times, an almost insurmountable challenge, and the strain of caring for the child at home is difficult for anyone, other than the parents, to realize.”
“Due to the level of involvement Michael's care required of us, we kept a low profile. Many of our relationships were cut off, as a result of our own doing or the other persons involved. Learning to deal with people including friends' and families' reactions to his ever changing and deteriorating condition was painful for us, as parents.”
“As Michael's situation worsened, we were fortunate to have a few friends and relatives that were supportive and were not afraid to discuss or deal with our situation.”
For many families, grandparents are an invaluable resource. While grandparents, too, are mourning the loss of their dreams, many have found that helping their own children through this difficult time has made them feel useful and needed. When grandparents are able to spend some time taking care of their sick grandchild, parents are better able to use that time to be together or to be with their other children. If you have parents or in-laws nearby, and they are willing to be involved, call on them. They can be a wonderful source of support to you.
“Kate loves hard surfaces (like my parents' kitchen table). The smooth surface enables her to manipulate herself better. My parents will sit on either end of the kitchen table (the long way). They put Kate on her stomach. They put their hands open on the bottom of her feet and she will push off them and repeat this until she ends up at the other end of the table. Then she repeats the other way.”
When You're Feeling Overwhelmed
Even with the most supportive family and friends, sometimes you will feel overwhelmed. Caring for a child with a progressive neurological disease is stressful, emotionally painful, physically exhausting, and sometimes, just overwhelming. At those hard-to-cope times, it is especially helpful to be able to talk to a supportive listener. Good listeners can be found in many places. Some parents find it particularly comforting to speak to other parents. They will tell you that it's simply a relief to be able to vent your feelings to someone who knows exactly what you're going through. Other parents seek professional counseling. In fact, many parents have found therapy to be extremely helpful at some point (or several points) in their child's life.
Whatever avenue or avenues you choose to take, recognizing when you're feeling overwhelmed and seeking appropriate help is one of the most important coping mechanisms you can develop.
“I spoke many times with a social worker from Boston Floating Hospital . He was very supportive. He phoned often and when I brought Tim to Boston every few months, we would speak at length. [Tim's sister] saw a child psychologist after the death of her brother to make sure that she was dealing with it all. I most certainly believe that this type of support is needed. We all need help at some time or another.”
“It was always therapeutic for me to talk to another parent in the Parent Peer Group of NTSAD. So many times we would be faced with making a decision and would feel like we had virtually no guidance from the doctors. It was at these times that discussing other parents' solutions to similar problems was particularly helpful.”
Any traumatic experience which impacts on the two members of a couple can affect the marital relationship. While, in some cases, sharing the tragedy of having a child with a serious illness can bring a couple closer together, more often the experience places a significant strain on the marriage. Problems present in the marriage before the birth of a child with a progressive neurological disease may well be exacerbated with the added burdens on the family.
One common source of marital difficulties is anger. It is a natural reaction for parents of a child with a progressive neurological disease to feel angry: angry at God, angry at the doctors, angry at just about anyone.
“I didn't feel guilty about our daughter — I felt angry. I waited until I was married to have a child (unlike all of my siblings.) I planned to have this child. I was going to be the best mother in the world—and I felt cheated. I also became angry at every healthy child's parents.”
Sometimes this anger becomes misplaced and is taken out on those closest at hand; understandably, that closest person may well be the spouse. It isimportant to keep in mind that the anger is often a reaction to the loss, or the impending loss, of the child. If each member of the couple can recognize the underlying feelings of frustration and helplessness, and hear past the anger, they may be able to work toward pulling together rather than tearing each other apart.
“I sometimes have to remind myself that despite everything that is happening to us right now, we still have each other. That's why we married in the first place—to be together.”
Disappointment and unmet expectations are another cause for strain in the marital relationship. Sometimes one parent may feel that the other “just can't deal” with a seriously ill child. She or he may feel overburdened and abandoned. The unfortunate reality is that both parents are hurting, leaving limited energy available for comforting each other. When one needs comforting the most, the other may be least able to “be there.”
“When we found out about Elizabeth he dove head first into drug and alcohol abuse. I took care of everything with little financial support from him and no emotional support.”
“There are times when I want my husband to leave because rather than offer me support, he adds to my pain. I feel like I'm going through this alone.”
Finally, numerous couples express concern over their sexual relationship. The emotional pulls and physical demands of caring for a seriously ill child over an extended period of time often impact on a couple's desire or ability to maintain their sexual relationship. Sometimes just recognizing that this is a common reaction to particularly stressful situations can help couples in understanding and dealing with these issues.
“A wedge seemed to come between my husband and me, come bedtime. My thoughts focused only on my ill son and I could not seem to enjoy my husband's sexual advances.”
“Laura was up a lot in the middle of the night. I would get extremely tired and lost interest in lovemaking.”
It seems that the best way to protect your marriage during this difficult time is to make every effort to keep the lines of communication open. This means that each of you is free to share feelings, thoughts or concerns without fear of blame or of overwhelming your partner.
At the same time, each may want to recognize that some of your “comforting needs” may best be met outside of the marriage. Family members, friends, clergy, counselors, or other parents can be an alternative source of support and caring during this stressful time. Parents must also respect each other's differences and recognize that no two people mourn in the same way. While you may feel better being very much involved in your child's care, your partner may need to be more removed.
There is no right way to deal with a tragedy such as this, and while you may not always be “in sync,” if you talk about your feelings and concerns openly and explore solutions together, you could emerge from this experience with a stronger, more understanding relationship.
“How do I cope? I talk and talk and talk about Sandra and my feelings to any and everyone who's interested.”
“The greatest preventative measure against marital stress, for us, was to talk, talk some more, hug, and every once in awhile, have a really good, earth-shattering cry.”
Caring for a child with a progressive neurological disease requires immense time and energy. If you have other children as well, life often feels like a juggling act with too many balls in the air. Many parents worry about the toll that their sick child's condition will take on their healthy children. Surely they will be affected by this experience just as you will be. However, with guidance and love, many families find that their other children emerge with a sensitivity and caring about others that makes them very special indeed.
Based on their own experiences, parents of children with neurodegenerative diseases have offered some suggestions regarding the care of siblings.
- Try to include your healthy children in what's happening.
When feasible, even allow them to participate in their
sibling's care. - Be honest and answer questions directly. If you are
comfortable talking about your sick child and his or her
illness, chances are your other children will respond similarly. - Try to reassure your healthy children that they are OK:
they cannot “catch” this illness like other diseases; and,
equally important, they had no role in causing it, despite
any angry feelings they may have had towards their sibling. - Resist temptations to “deify” your sick child because he or
she never “misbehaves” as your healthy children sometimes do.
“One parent told me about her healthy son and her son with Tay-Sachs disease. The healthy son felt that he was always getting in trouble, while Andrew was getting so much more attention and never did anything wrong. Andrew's mother's solution to this problem was to “admonish” Andrew for doing things such as coughing or “eating” too rapidly through his G-tube. The sibling rivalry died down when her healthy son felt on a more equal level with his brother.”
Although your time and energy are at a premium, it is important to remember that your other children need you too. They need to feel free to be themselves and not feel constantly pressured to be “good” because Mom or Dad has all that he or she can handle. Open communication is especially important now between you and your other chidren.
The reality of these diseases is that sometimes you may not be spending as much time with your healthy children as you are with your sick child. Give your well child the freedom to discuss his or her feelings about this and other issues. And give yourself the freedom to ask for help if you feel you need it. Many families find that professional counseling by a family therapist during this stressful time can be an important support in helping you and your children deal with the loss of a child or a sibling as well as the loss of a more “normal” family life.