Wednesday, Oct. 11, 11 a.m. ET
Coping with a Dying Parent
Wednesday, October 11, 2006; 11:00 AM
Malene S. Davis, president and CEO of
Malene Davis: It's not easy thinking about -- let alone actually talking about --the approaching end of life of someone we love and care about. Still, having that conversation today can save loads of anguish and second-guessing later. I know from that both personal and professional experience. So, let me try to be of some assistance to those of you who would like to know more about the issues and choices that patients and families might want to discuss, particularly before the patient is in a medical crisis.
Falls Church, Va.: It seems that some doctors, nurses, family members and friends of very sick patients don't want to talk about end-of-life issues because it appears that they've given up hope. Can you talk about hope in the context of end of life?
Malene Davis: Hope is a precious "commodity" that should never be taken away, but needs to be redefined throughout the course of any illness. ... Toward the end of life, we need to ask "hope" for what? Hope for companionship, comfort, dignity, preferences, etc., rather than for unrealizable "immortality" at the expense of those other more attainable goals.
Washington, D.C.: Any suggestions for resources on coping after the parent dies? My dad died this spring after a long illness and it's terribly hard not to have him here. Part of the issue is that he did not really accept that he was dying and did not want to engage in those uncomfortable conversations with his adult children before he died. So we're left feeling like we should have done more for him.
Malene Davis: Other than informal resources of family and friends, and community based faith bases groups. The most outstanding hospices in America have bereavement support for not only the families who were in the program, but community bereavement support groups. In unusual situations where there is a prolonged or severe "pathological" grief, then other professional resources (psychiatry/psychology/social work) with specific training/expertise may be required.
Oak Harbor, Wash.: Ms. Davis, I just wanted to comment on how remarkable a job the Hospice of the Chesapeake performed with my mother's terminal cancer. I am active duty in the military and the tremendous support I have received was greatly beneficial during a very difficult time in my life. The Hospice is a wonderful organization and I SALUTE the many social workers and staff of the Hospice. Thank You.
Malene Davis: Encouraging words like yours are extraordinarily helpful and reinforcing. I will share them with my staff who I know will appreciate them as they continue on in this important work. I can only reciprocate by sharing my appreciation for your service and sacrifice. Thank you and best to you always.
Portland, Maine: My father passed away on July 31st from lung disease after an extended illness. Hospice was an invaluable resource for he and my mother. The focus of my siblings and I is to help my mother adjust to her new life after being a full-time caregiver. Are there clear steps to take in doing that other than invitations to outside activities?
Malene Davis: It sounds like you are doing all the right things. The key to staying "grounded" is remembering to be patient. After such a loss, returning to any semblance of "normal" life may take up to two years. However, if there are serious concerns about depression then professional help should be sought. Best wishes to you and your family.
Fairfax, Va.: What would you recommend when the patient refuses to talk about dying, even though her family members might want to? There are things we need to talk about as a family, but the patient won't allow the discussion to happen. What would you do?
Malene Davis: It is important to meet people on their own terms. "Whose issue is this?" is an important question to sort out. It is not uncommon in families for family members to be in very different places with regard to feelings about death, loss, etc. However, and sometimes tricky, you have to distinguish someone's (the dying person's) self-protection from their desire to shield their loved ones from their projected sense of loss. Within families this is probably best dealt with by ongoing reassurance that "we love you," "we will be okay," "we will miss you," and again and again, "we will be okay." Being open and accepting of others' perspectives is particularly difficult when feelings are running high, but there is no more important time to be just that -- open and accepting. This is sometimes the first opportunity that a family has to REALLY come together. I believe that love is the answer, and it will carry you and your family through.
Cleveland: We are dealing with a very active parent who is losing ability to care for herself. She volleys between anger at her predicament, depression at not wanting it to go this way, and keeping a stiff upper lip and being "fine." As I'm the youngest, she still feels a need to hide her condition and feelings from me. Any suggestions for being able to break down these fronts so that conversations can become more real?
Malene Davis: Although this is very difficult for you, take some comfort in the fact that you are not alone. Your mom's struggle is one that most of us will go through and you can probably be most supportive by being authentic with your feelings, working at being patient (which is hard, hard, hard!). Focus on the present, -- what can we do today to be helpful, have some fun (eg. review old photos) and let her know you won't think or feel less of her for becoming dependent. Mostly, though, parents want to know that their kids will be okay. So, remind her of that often. I wish you all the best.
Fairfax, Va.: My grandmother just turned 94 and is quickly declining in her ability to move around, take care of herself, and enjoy life. She's not been diagnosed with any particular disease, and her doctors have not said anything about hospice yet, but she's certainly "failing to thrive". Is hospice appropriate for her? If not, are there other resources available to elderly patients in this situation?
Malene Davis: It sounds like she is eligible for hospice care as defined by the Medicare Conditions of Participation if she is a Medicare beneficiary, under the "Adult Failure to Thrive" or "Debility Unspecified" criteria. The important thing is that her physician understands this and supports admission to hospice. Although a "physician's order" is not necessary -- but certification of prognosis of less thank six months of life expectancy is -- things seem to go most smoothly when the primary care doctor and hospice team are in sync and communicating. I hope all goes well.
Bethesda, Md.: My mother passed away from cancer in 1989 and she and I talked about her dying and our feelings. It was a blessing. My dad is 85 and he has told us how he wants his funeral and where his papers are. He has a DNR and a living will. It has brought us closer together. What resources are available to adult children to get these conversations going? I also think my dad could benefit from hospice although he is not dying right now, he does not have cancer but I see him going slowly. He has heart problems, he has really been declining. I am not sure he will be with us in a year. Does he have to leave a nursing home to get hospice? He is in a VA hospital. Is that a problem to get hospice there?
Malene Davis: It sounds like your dad is eligible for hospice and all the sites of care you mentioned should offer hospice services. I hope things go well.
Silver Spring, Md.: When is the best time to get hospice involved? If you call too early, will your parent (or their doctor) think you are giving up on them or want them to die?
Malene Davis: It's never too early to seek counsel for information, support, or services as the case may be. The best hospice programs will be happy to provide what's most useful to you given your particular circumstances. By doing a bit of research up front, you will be far more prepared to entrust the care of your loved one to a hospice program. I hope all goes well.
Anonymous: Is it okay to cry in front of your dying parent, since she can still see through her eyes?
Malene Davis: I think that the "right" answer is to be authentic and emotionally honest with yourself and those who know and love you. We all (well most of us) come into this world crying, and so our parents are used to it, although it takes on more poignancy as we grow older and become "adult" children. Honor this extraordinary relationship by showing your "true colors." Lastly, and perhaps a bit more difficult, is accepting your parent as they become increasingly dependent (and for them to accept this in themselves) as they progress toward the end of life, and the roles seem to reverse. Trite as it may sound, love is the answer (that and a lot of patience!).
I hope all goes well.
North Potomac, Md.: I had read somewhere that the holidays are a good time to have a discussion with family about health care planning. Doesn't that seem a bit morose for Thanksgiving or Christmas table chatting?
Malene Davis: I actually think this is a good time to talk about it. In my family we reminisce about relatives and how they are missed -- which leads to a healthy conversation about each other's thoughts about our wishes. What doesn't work is when we don't understand our loved ones' preferences -- that is when bad things happen. As Forest Gump should have said "morose is as morose does" so make it light, have some laughs, but make sure it happens!
20009: My Dad died three weeks ago, and as horrible and traumatic as that event was, I'm hanging in and doing okay. My 81-year-old Mom is a different story. Dad was her caretaker -- she doesn't drive, walks poorly, suffers vision loss, has severe memory issues -- so over the past few years Dad did all the running, shopping, cleaning, dog walking -- you name it.
Yet, with his passing Mom is steadfast in keeping the house (which was too large for both to deal with only a month ago) and relies on the generosity of neighbors to get by -- in a sense running all of the errands my Dad did. "They want to do it," she says over and over, but you and I and the rest of the world knows there's a limit to this. And unfortunately, I'm in D.C. and she's in NJ, so it's not like I can get even the tiniest things done with ease from this distance.
I know that this situation isn't uncommon but I am stumped by how to handle, and even just discuss, these issues with my stubborn, still independent-minded Mom who won't even think of selling the (pricey) house, moving here (or any assisted-living facility!) where I have a great job and can do all the things the neighbors are doing at present. It's a no-go.
Any insight or words of wisdom as to how to gracefully reapproach this matter? I've tried every measure of tact and tone and still she won't budge.
Malene Davis: It sounds like you are doing all the right things. I dare say most of us "boomers" will be very much like your mom (God help OUR kids!). All I can recommend is to call often, visit when you can, invite her to your home as often as it works out for you and (trite as it sounds) let nature take its course and know in your heart of hearts that you have respected her dignity by supporting her values and wishes. I hope all goes well.
washingtonpost.com: Ms. Davis has to run. Thank you for your questions.
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