Help From Hospicare
Have a question about hospice care, pain management, spiritual matters at the end of life, or bereavement? Wondering what to say to a friend who just entered hospice care, or what to say to a child who just lost a significant person in their life?
Help From Hospicare is an advice column written by members of the Hospicare team, including bereavement counselors and our spiritual care coordinator. Every month we will feature one question in the Hospicare e-news, and archive the rest on our web site. If you have a question you can email help@hospicare.org and we will answer it for you. All Q&A responses will be published anonymously, and anyone of any age is welcome to write.
*Please note, if you need to speak to Hospicare staff or have a direct patient related question, please call 607-272-0212.
August, 2011 was answered by Kira Lallas, one of Hospicare's Bereavement counselors.
Q. My 10 year old son is driving me crazy! His Dad died a few months ago and at first I was letting him do what he wanted because I figured I should take it easy on him after his Dad died. Now he expects it that way all the time and won't do anything I ask, and gives me attitude. I am grieving too and I don't know how long I can take this. How do I get him to behave?
A. This is something many caregivers struggle with. It's extremely hard to manage one's own grief and to be a parent.
Growing up, children build and learn a fundamental trust in the world: that someone will care for them, that they can rely on a certain level of cause and effect (that if they do one thing, something else will happen). When someone a child loves dies, especially when it is a sudden death, that child has to comes to terms with something that is very hard for many of us to understand -- that someone is alive one moment and not the next. This can really diminish a child's sense of trust and also foster anxiety and insecurity. To counteract this, many children will act in ways that they know will incur a reliable outcome, to renew their sense of trust. For some children this becomes what is called "regressive behavior," when they act like an age much younger than themselves, reminiscent of a time of life when things felt more stable and secure. Other times, children may behave badly in order to bring about a consequence that they know -- that is reliable. It is very tempting to let rules and consequences slide for children after a death, but it is important to keep routines and consequences that they know to help them feel safe and secure. Doing this often keeps bad behaviors in check.
It is also important for you to get the support you need in your grief, for your own well-being and for that of your son -- children are significantly affected by how their caregivers grieve and heal.
Remember that you are not alone in this process. Please call Hospicare for further help or more resources to assist and support you.
June, 2011 was answered by Edie Reagan, Hospicare's Spiritual Care Coordinator.
Q. I am a woman in my mid-sixties. My physician recently informed me that I have a prognosis of ten months to live. I feel fine at the moment, and wonder when I should get in touch with Hospicare?
A. Like you, many terminally ill people and their families ask, "How will I know when it is the right time to call Hospice?" Of course, there is no single or simple answer to that question. It all depends upon individual circumstances. But if you’re wondering about the right time to contact Hospicare, now is probably the time to call. It is never too soon to start gathering information. A very good rule is to call Hospice sooner rather than later.
An important part of Hospicare’s mission is providing guidance to families in Tompkins County about any end-of-life care issues, whether or not they are enrolled on our services. Hospicare staff can answer your questions and help you better understand your options. Calling isn’t a commitment, only an opportunity to become more prepared.
Many people are surprised to learn that Hospice can support patients and families for many months at the end of life. When a doctor agrees that a patient is in the final six months of life if the illness runs its normal course, hospice care can begin. But even if the patient lives longer than six months, hospice care may be able to continue, if a six month prognosis still seems likely.
You don’t need a physician referral to call Hospicare for information. If it appears that hospice might be beneficial at this time, we will, with your permission, contact your doctor to discuss it.
"If only we had called sooner....." is a comment we often hear from families who have experienced the benefits of Hospice. The team can certainly help if they are called in during the last few days of a person's life, but early intervention allows the Hospice team to benefit the patient and family more comprehensively. Hospicare can assist patients and families in many ways -- medically, psychologically, and spiritually -- and much more effectively when there is time. By contacting us early, you ensure that you and your family will receive this holistic array of services as soon as possible.
May, 2011 was answered by Kira Lallas, one of Hospicare's Bereavement counselors.
Q. Your Good Grief programs talk about “fun events” for bereaved children. In what way does “fun” figure in to grief?
A. While for adults, verbalizing is a natural form to express and process emotions, for children it is more natural to play and create to express and process. When we are with children after a loss, it can sometimes even surprising or disturbing to see a child playing or drawing and we think, “I just told him that his Mom died – why is he playing that game?”
In fact, playing a game, running around, creating art, or “fun” activities aren’t diversions from grieving or expressing feeling, but are in fact part of the process. So when we plan events at Hospicare for children, we want to honor a child’s more natural process and provide the opportunity to play and create. We want children to feel comfortable here and to enjoy their time, while also normalizing their experience by being with other kids and families. That being said, in the context of activities that they feel comfortable with and enjoy, we also always relate those activities to the loss they’ve experienced and encourage expression throughout.
Our next event is May 19 where we will be making masks to explore and express feeling. We will read a story about a child whose loved one has died and use that to talk about their own loss. Then we’ll take a walk outside to collect natural materials and create masks to further share with. Families will go home with some ideas about how to use the mask at home to continue expression and conversation.
Please feel free to call and ask any questions about our Good Grief events – we welcome feedback and ideas!
April, 2011 was answered by Edie Reagan, Hospicare's Spiritual Care Coordinator.
Q. My mother’s dying; how can I make the most of this time to create a meaningful goodbye for us both?
A. Though painful in many respects, spending time with a loved one who is drawing close to death often yields precious gifts. This can be time for exchanging love, for reconciliation, and for transformation.
Spend some time alone with your mother. If there are past hurts, this can be a special opportunity for healing. Ask for and offer her forgiveness. Tell her how grateful you are for her and for all that she has given you and taught you in life. Tell her that you love her and will remember her always. Seize this moment to say and express everything in your heart.
And remember to take good care of yourself during this intense time, especially if you are also serving as your mother’s caregiver. Try to eat well, get rest, reach out for support, and make sure to take breaks regularly, just to “breathe” a bit and to re-connect with the ongoing flow of life surrounding you.
March, 2011 was answered by Kira Lallas, one of Hospicare's Bereavement counselors.
Q. What do I write in a condolence card to a workmate whose mother has died?
A. It can be hard to find the right thing to say in a card or in person to a bereaved person. While each situation and relationship is different, there are some general guidelines that could be helpful. First, sending a card or in some way acknowledging the death is important. Even if you don’t find quite the right thing to write, or fumble a little when you to say something, it is often the effort and thought itself that means most to someone.
Like any letter, there is an opening, a middle and a closing. In a condolence card, you can express your sympathies in an opening simply with something like, “I’m so sorry; I heard about your mother’s death.”
And then, for the “middle,” if you knew the person that died, write something about the qualities of the person or a specific memory of them, even if it is brief. For example, “I didn’t know your mother that well, but I remember the time she came in to the office while she visited you and was struck by what a gracious person she was, and it was obvious how proud she was of you.” Or, if you didn’t know the person at all, but want to just express your best wishes, you might include something like, “While I didn’t know your mother, losing a parent can be very difficult.” In this case, you might mention some special quality of the bereaved person that might help them through the experience.
Close with something like, “My thoughts and best wishes are with you at this time.”
Taking the time to express your care is more important than the particular words and will be much appreciated.
