Liza Mundy and Dave Kendall
Washington Post Staff Writer and Husband of Diana Kendall
Monday, March 10, 2008 12:00 PM
Until Diana Kendall was diagnosed with a devastating disease, her husband, Dave, never imagined how sorely their commitment would be tested. Eight years later, their marriage is a realization of his promise to love her "in sickness and in health."
Washington Post staff writer Liza Mundy was online Monday, March 10, at Noon ET to discuss the
Submit your questions and comments before or during today's discussion.
A transcript follows.
Liza Mundy: Hello to everybody participating in this chat, and to those who have already written in. There are a number of excellent questions waiting in the queue and I'm sure more will come up. I want to thank Dave Kendall, the subject of the caregiving article, for participating in the chat today. He'll be answering some of the questions, and I'll respond to others. And now we'll get started. It may take a few minutes for the first answer to post, so don't go away.
Washington, D.C.: To Dave and Liza,
Divorce rates are high in marriages where one spouse is severely injured or chronically ill, do you have a gender breakdown? It seems husbands always leave, but the wives often take care of their husbands.
Liza Mundy: Thanks very much for writing in. I found it hard to find hard statistics about divorce in caregiving situations, though it is generally accepted that divorce rates are high, and there is data showing that a person with multiple sclerosis is 60 percent more likely to be divorced than someone without chronic progressive disease. As for gender, I think there probably is a stereotype that women are more likely to stay with their ill partner, but I don't know if that's true. I spoke to Kelly Thompson, a local attorney who also works with Dave, and she told me a number of stories about husbandly devotion. One of the Well Spouse support groups I went to was evenly divided between male caregivers and females. I also talked to a doctor who felt that men probably get praised more for caregiving, whereas when women are caregivers, that's pretty much taken for granted. If there are any representatives from caregiving organizations--or if Richard from Well Spouse is reading this--please feel free to weigh in on gender issues.
Arlington, Va.: Your article had one gratifying result, in that it caused my husband and I to discuss what we would do under similar circumstances. While I think it's probably true that you never know what you would do until actually faced with a situation, our preliminary thoughts are that we would want the other to find companionship outside the marriage, certainly in the case of a mental disability but probably in the case of a physical one, as well. Hopefully we will never have to deal with this, but we are grateful to have had the conversation and plan to keep talking. God bless you both.
Dave Kendall: In my view, it is never too early to discuss contingencies in a very respectful and caring way. I learned that they really do happen.
The issue of companionship is very tricky. When does a spouse decide that their spouse meets the criteria? suppose they have fears and change their mind? As I say, I have been surprised many times in this experience.
Herndon, Va.: I was incredibly moved reading this story. It just brings into focus the idea of never know how much time you really have to spend with your partner, spouse, significant other, etc. I have a friend who lost his partner years ago and he always says that looking back he wishes they had taken more vacations. Dave, you talked in the article about how you never really took vacations, do you wish you had some splurged a little back then so that you would have some of those memories now?
Dave Kendall: Excellent question. I personally do not question past decisions too much. Life has been great and I have been blessed.
Washington, D.C.: Comment: As President of the Well Spouse Association (http://wellspouse.org), I wanted to thank Liza Mundy for doing this excellent story, and our WSA member, Dave Kendall, for his major efforts in making himself available for extended interviews, in order to spell out in detail the life of a spousal caregiver. -Richard Anderson
Liza Mundy: Thanks, Richard, and thanks for your help in executing this story. Based on your own experience and expertise, feel free to write in again, and respond to any of the answers we publish or add your thoughts.
Gaithersburg, Md.: My wife, 62, was diagnosed with Huntington's disease in 2004, but she had been showing systems for at least ten years before that. (Her mother died of the disease in 1990 at age 66.) Some were physical (stumbling, falling) but most were mental or emotional (extreme anger, irrational thought, inability to concentrate on things, and so forth). She was finally hospitalized for three weeks a year ago after the anger became impossible to deal with, and afterward began taking the drug Geodon which has really helped the anger issues. Her physical difficulties are not as severe as Diana's (yet) - she can feed herself if I leave food wrapped on plates before going to work, and does like help getting into bed at night, and holding my hand when walking short distances - but she is relatively inactive now. In her case the mental/emotional difficulties are greater. Everyone with this horrible disease is affected differently. This was a wonderful, heartwarming article, and several of my friends have already commented to me about it.
Dave Kendall: I wish there was some way you could attend our support group. There is one for at-risk and PHDs in Kensington.
Herndon, Va.: My admiration for Mr. Kendall knows no bounds. My wife and I discussed this article, both wondering if one of us could do this if the other had a such a problem. The only conclusion we reached was "we don't want to have to find out."
Dave Kendall: True, you DON'T want to find out. :-)
If you have a strong commitment to your values, you will adapt and adjust.
It is quite a thing to walk-the-walk.
New Carrollton, Md.: Truly amazing and beautiful story. How did you find the Kendalls, and approach them about writing this? Thanks.
Liza Mundy: Thanks very much. After a story I wrote was published, we received a message from the president of the Well Spouse Association suggesting that we profile someone who faced the predicament of coping with a seriously ill spouse much earlier in life than would be reasonably expected. I thought it would be an interesting situation to examine, both in terms of specifics, and as a meditation on marital commitment and how far it extends. I attended a Well Spouse support group, and Dave was there, and we chatted for a while afterward. He was very open to the idea of being profiled, and so, it should be pointed out, was Diana. I would really like to salute her willingness to share her situation, in such an honest and forthright manner.
Bristow, Va.: I live about 30-45 minutes away, we are moving and I have two Sterling stairlifts that are only 3 years old, that I would like to donate to Dave and Diana. Our daughter who has spina bifida used them. I have to remove them for the new owner and had no idea what to do with them. After reading this loving story I told my husband I was going to try to contact you. They can be cut down to size, it looked like you have a split level. Please let me know if you could use them and how to give you my contact information.
Dave Kendall: Bless your heart.
I have to think--I looked at stair lifts at one time. I have a 2 story home with a landing in the stairs.
Can someone get your phone number or give you mine?
Washington, D.C.: In re-reading the responses, and the story, I was struck by the positive attitude that Dave has towards his life now, and how he focuses on the here and now, not the past or the future. He is blessed, because a lot of caregivers suffer from depression, even if they don't recognize it. That makes their caregiving even more difficult.
Liza Mundy: Thanks, Richard. Did you have any thoughts about the gender issue raised above? It is true that men are more likely to leave and women to stick around, in your experience? Or is that an unfair stereotype? If you write in again, I'll post your answer.
Severna Park, Md.: Not a question, but a brief comment. First, though, thank you to both of you, and to Diana and your daughter, Dave, for doing this story. My mom died of Huntington's Disease in February after a more than 15-year battle with the disease. For the last year and a half of her life, she could not speak more than a word (and rarely that), could not walk or even sit up, and could not take care of herself in any way. Huntington's is horrific in terms of both its impact on the patient and on the people who love and care for them.
I did want to comment on the heritability of the disorder. I believe in the article, you mention that family members are at risk for the disorder. To clarify a bit, and perhaps help others understand part of what can be so horrifying about the disease, each child of a person with Huntington's Disease, or of a person who has the gene but has not yet manifested symptoms, has a 50% chance of developing the disorder themselves. If an individual inherits the gene, he for sure will develop HD at some point. Thus although all children are at risk, if you take the genetic test and become aware that you have the gene, you know that you will develop HD and that your children, should you have any, have a 50% of developing the disorder.
I wanted people not familiar with the disease to understand what is meant when we talk about "being at risk." It is different than being at risk for breast cancer if you have a gene linked to that disorder.
Thank you both,
Dave Kendall: Cheryl,
Amen to your comment. It devastates families. That is one reason why I think it one of the worst diseases.
Washington, D.C.: It's Richard Anderson from wellspouse.org
On gender, I can give two statistics: The Well Spouse Association has about 25% males, 75% females... but then male spouses take longer than female spouses to self-identify as caregivers, and look for help.
Also, about 46% of all family caregivers are males.
Liza Mundy: Thanks, Richard. I assume that by "family caregiver," you mean someone who is caring for an adult parent, or a spouse, or an ill child.
Herndon, Va.: The most moving article that I've ever read in the WP, hands down.
I can honestly say that I will never be able to read the verses (about loving your wife like Christ loved the church) again without thinking of you and of your devotion to your wife. Liza, thanks for writing this powerful story of commitment, devotion, and taking wedding vows seriously.
Liza Mundy: Thanks very much for your comments. I also was moved to read Ephesians, a number of times, and think about it.
Alexandria, Va.: I knew Diana when she worked at DTIC and found her to be a delightful and kind person who was upbeat even after her diagnosis. Your article was very moving and touched my heart. I am happy to know there are people like Diana and David in the world.
Dave Kendall: Sara,
Bless your heart. You guys were SO beautiful and a wonderful part of our story.
I hope all co-workers and employers read my response. People around us suffer in ways we do not comprehend.
Call Diana sometime. She can talk with difficulty.
washingtonpost.com: Information on HDSA DC-area support groups (Huntington's Disease Society of America Washington Metro chapter)
Liza Mundy: Thanks.
Gaithersburg, Maryland: I'd like to find out more about that Kensington support group, but what with work and church choir and bell ringing at the Cathedral (all of which my wife supports) I don't know if there is the time. Also, I'm not sure how she would react to me going to a support group for a condition that she denies having! It is not too hard taking care of her at the moment, but I miss the emotional closeness that used to be there.
Dave Kendall: Wow, I wish you could call me and talk.
I absolutely had to obtain the services of a psychiatrist. Once she was on effective medication, she became an inspiration and huge support. You need the cooperation.
Guymon, Okla.: You guys rock! Michelle Singletary would love your financial approach. Unfortunately, my wife and I are now facing ALS and, while I certainly hope to be there for her as Dave is for Diana, we are not in nearly as good a financial shape, nor is the medical treatment available here (Oklahoma panhandle) comparable to what you can get in the DC area. I'll be praying for you and hope you can fit in a prayer for me as well. All the best, Ken and (another) Dianna
Liza Mundy: Dave is answering is couple of other questions, so I thought I would post this one, and say that I wish you all the best, and salute your commitment. Like Huntington's, ALS is a very difficult disease and I hope you are able to find good care.
Washington, D.C.: Regarding the question of talking ahead about what one would do, I agree that's important, but when it comes down to the actual time when events, often acute, or emergency are happening, that's another story.
Liza Mundy: Yes. As Tom Shroder pointed out in his editor's note, knowing how one would respond in such a situation is probably as difficult as knowing how one would respond in combat.
Reston, Va.: My Godfather, who I am close to, has been diagnosed with HD. He shows no physical symptoms yet, however the past 2 years our family has been noticing emotional and dramatic behavioral changes. Looking back, when did you or your family first notice these changes and when did the physical symptoms become noticeable?
My other question is where online do you seek guidance or find the most helpful in dealing with HD?
Dave Kendall: I find the HDSA web site helpful. And I also like HDAC, which links to HDSA.
HD was diagnosed as a shock. I think her deceased dad had late onset HD. Diana's symptoms began approx. 5 yrs before she was tested/diagnosed.
Bel Air, Md.: Liza, I've been a nursing home administrator for many years, and my experience is that the old saying is true: husbands are much less likely than wives to be in nursing homes, because wives fight harder and do more to keep them out. In part this is because wives are often younger and healthier than their husbands, and, statistically, women outlive men. I also think (non-PC statement coming) that women may be more nurturing and/or have developed more of the skills that make this possible. But, for whatever reason, the bottom line remains the same.
Liza Mundy: I'll publish your comments, and thanks for contributing them. And thanks for your work.
Manassas, Va.: Dave & Liza,
Thank you for bringing us an excellent real life yet very touching article. Unfortunately the world around us is not yet open to fully supporting caregivers in their varying needs. My husband is wheelchair dependent due to a form of Muscular Dystrophy. No matter how many times we say, Muscular Dystrophy, even those in the medical field, change it to Multiple Sclerosis.
Good Luck to Dave and Diana.
Liza Mundy: Thanks for this comment, too, and I wish you well. Maybe it will clear up what appears to be some common confusion.
Washington D.C.: This was one of the most moving articles I've ever read in the Post Magazine. Thank you for illuminating this kind man's struggles.
How does long-term care insurance figure into this (if it does, at all?). My husband and I have a significant age difference between us, and, if one of us had problems, would this insurance help pay for day-time care?
Dave Kendall: Yes, buy it now.
My wife has a caregiver, and it costs roughly $40,000 per year. LTC insurance pays for it.
It is the best investment I ever made in my life.
Westminster, Md.: Your article was hard to read, but thanks for writing it. And thanks to Dave Kendall for telling the story. I have water on the brain, not Huntington's disease, but my decline has been noticeable and we're afraid you represent our future.
Liza Mundy: Good luck, and thank you for your comment.
On behalf of a number of families and individuals we know in the DC metro area who are dealing with the devastating impact of Huntington's Disease, I am writing to thank Liza for a terrific article and to thank Dave and Diana for their courage and grace in agreeing to be profiled.
My name is Murrey Jacobson and I'm the President of the DC area chapter of the Huntington's Disease Society of America. And I can tell you that a number of our members share similar experiences wit Huntington's as Dave and Diana shared in the article with Liza. Huntington's is a difficult disease that provides tremendous challenges for the caregiver and person with HD. Your article helped shed more than a little light on that burden.
I also wanted to let people dealing with Huntington's Disease or at risk of Huntington's that there is local help and support. We have a local chapter that features monthly support groups and other resources. You can find plenty of information about local meetings at our website www.dchdsa.org and other national resources at www.hdsa.org. You can reach our offices for help or more information at 703-204-4634.
We also will be co-hosting a major symposium next month that focuses on caregiving for people with Huntington's and can offer tips, support and help. The conference is on April 5th at Inova Fairfax Hospital. You can register to attend and find a full schedule at the dchdsa.org website.
Thanks again to Liza and the Post for making the larger community aware of what many families are dealing with.
Murrey Jacobson, President, HDSA Washington Metro Chapter
Liza Mundy: Thanks so much for writing in. I'll post all this information. And thanks for your help during the reporting.
D.C.: This is Johanna -- Liza, thanks for the way you put this article in perspective. By the way, Dave is my hero -- I love his attitude!
Dave Kendall: Liza is fantastic!!!!!!!!! I already miss her "living" at our house.
Johanna is such a huge support--more than she knows.
Baltimore, Md.: Just an agreement with the comment about male caregivers not asking for help right away (or maybe at all): my dad was sole caregiver of my mother during her battle with emphysema. When at one point she was in a rehab facility learning how to breathe, he was there every single day for 10 hours coaching her along. I don't think it occurred to him to be anywhere else, yet people in the hospital all seemed to marvel at his devotion. Also he never would ask for help from his five adult children, who offered and offered. It was almost as if he had to see this through, so he did.
Dave Kendall: I hope I do not cause an argument, but I think males need to learn to be more nurturing--and I am a macho man!! :-) I think.
Liza Mundy: Good points, all. I can attest to the fact that Dave does pursue a number of quite traditionally male activities--hunting, fishing, etc etc. But his nurturing capacity has clearly emerged with this illness, and it also strikes me that he applies the same level of meticulous attention to Diana's care that he does, say, to his professional work.
Vienna, Va.: Can you tell us some more about the gene testing (specifically the cost and whether your insurance can use it against you)? Thank you.
Dave Kendall: For HD genetic testing it is a blood test. The University of VA HD Center of Excellence will do the testing and counseling. They will not test without counseling. It is such a difficult process. The basic test costs under $500 but cost of several counseling sessions could take you to $1200. If HD is the issue, contact me and I can refer you to their genetic counselor.
DO NOT GET TESTED without having ALL of your insurance in place--life, long-term care, disability income. They can use it against you.
Leesburg, Va.: I'm Dave's sister. Reading the article reduced me to tears over & over again. What you read is amazing on the care Dave gives to Diana. I believe strongly that this is just the tip of the iceberg on Dave's caregiving & what it actually involves.
From sunset to sundown & through the night, David is caring for Diana's needs, without a lot of rest & never complains.
That's unconditional love.
We love you Dave, You're the best!
Liza Mundy: I'll post this since Dave may be too modest. It also struck me, reporting the piece, how much support Dave gets from his very involved and affectionate family.
Emmitsburg Md.: Liza, Your byline always draws me to read your articles. Once again I am impressed by the kindness and humanity you bring to life. Dave and Diana are living their vows in a most profound way. They exhibit Gospel love. Their story has given me a deeper awareness of my fellow travelers.
Liza Mundy: Thanks. Personally, I find it very interesting, and moving, to report pieces about people in difficult situations who are struggling to get through them with integrity.
Washington, D.C.: Richard Anderson again. I just wanted to put in the information about the Well Spouse Association (http://wellspouse.org, 1-800-838-0879). We're a non-profit, 501(c)(3) organization that provides support to husbands, wives or partners of spouses with _any_ chronic illness and/or disability. In particular, we offer emotional support, so that spousal caregivers do not have to feel they are alone, doing all that they do, for love.
Liza Mundy: Ok, thanks, here it is.
D.C.: Wow, this article brought tears to my eyes. Good luck and God bless to you both.
Your story reminds me of my mother-in-law. Despite having been through two bitter divorces from my father-in-law, she was the one who cared for him when he was diagnosed with a brain tumor. She visited him daily in the nursing home, sat with him, drove him to appointments, etc. until the very end. I pray that should the situation arise, I can show the same love and devotion that you and she have shown.
Liza Mundy: You know, I have heard of this--where a divorced spouse actually becomes the caregiver for the ex. Sort of the opposite of the situation where the illness leads to the divorce.
Chambersburg, Penn.: Thank for sharing the face of a dreadful disease with which many people are not too familiar. As I'm sure you know, Woody Guthrie's family was devastated by Huntington's Disease. For years I have given a modest contribution to the National Huntington's Foundation. After reading this article, I will try to give them a bit more. I hope others do the same.
Dave Kendall: Please do. HD is so unknown and people are desperate for a cure or treatment.
Thank you so much.
Takoma Park, Md.: I am 82 years old and cried and cried when I read your article. I grew up as part of a large family, one branch of which had Huntington's Disease but we didn't know it at the time. While there is not too much to be done now, it is actually much better than what was available then in NW Nebraska: practically nothing. Victims were mostly kept isolated, or institutionalized, and however they lived, they died terrible deaths. I am happy to see more public attention and compassion applied to this situation. The disease has pretty much petered out in my family as its victims by and large did not have children, but the memories are still strong and very painful.
Liza Mundy: Wow, that's fascinating. I heard about this too--how, once upon a time, people might, say, be committed to asylum. It is a terrifically difficult situation in the best of circumstances, but at least there is more education now--and more treatment, if, so far, no cure.
Silver Spring, Md.: Thank you for this story and your courage to write it. You have inspired me to do two things: 1. discuss these issues with my spouse and 2. make sure I make the most of the time we have now and do things we enjoy. I'm sure this is very difficult for you but by sharing your story you are helping other people and that is very much appreciated - I'm going to find out more about LTC insurance this week. You are both in my prayers.
Liza Mundy: We have lots of comments still to answer, so I'll just post some of them, with thanks.
Gaithersburg, Md.: There is a wonderful support group on yahoogroups.com called "HDCaregivers". I've been on it for several years. On this list people who are taking care of their family members who have Huntington's disease can talk, vent, cry, and get support. I sent a link to the magazine article to them yesterday and the responses I've gotten so far are that they were all very moved. Dave, this may be something you would want to join.
Liza Mundy: Again I'll post this one so we can get to as many questions as possible.
Mostly a thank you, also a question: All three of you, and the Post, for this story.
My husband's father had Huntington's and died at 60, and his sister has symptoms already at 36. He is 40 and shows no symptoms. We have chosen (for now, at least) not to have the genetic testing that would tell us whether he has it, knowing that a positive would change our lives irrevocably years before the disease itself would. But of course the possibility is always there, a vague shadow at the edges of our lives, and so I am unsure. May I ask what you think of this decision from the perspective of your experience, and whether you would suggest we reconsider?
Dave Kendall: This is such a huge question. People argue the answer for hours and hours.
Feel free to contact me.
Alexandria, Va: Thank you so much for sharing your story and thoughts with us, Mr. Kendall. You did a wonderful job conveying them, Ms. Mundy. And thank you for including the Christian experience and influence as well; I feel many times this is eliminated or played down by the journalist, but not so here.
When you wrote if you had known early on what you would be facing you said, "I might have quit living." Wow, wonderfully summing up why we shouldn't get testing to see if we will be getting Alzheimer's.
You are being Christ to your wife, and modeling for others His love through you. Thank you.
Liza Mundy: Thanks for your comments.
Alexandria, Va.: I suspect that church attendance may be problematic so we would like to make Dave aware that McLean Bible now provides church online. Services are at 9 and 10:45 each Sunday at www.mcleanbible.org/internetcampus. Dave and Diana remain in our prayers.
Dave Kendall: Thank you.
Annapolis, Md.: A new thing to fear: spontaneous development of Huntington's Disease! I'm wondering if you have been able to track any instances of this disease in Diana's background. I lost a friend to this disease a few years ago and still miss her very much. They, too, were surprised that she developed it, but in checking with older family members it turned out there had indeed been instances in her past. They thankfully seemed to avoid the "1 in 2" percentage, but even one person is one too much.
Dave Kendall: It probably came from her dad as late onset--he's deceased. Her mom was one of 12 siblings and none of them have it.
Severna Park, Md.: Dave,
I posted earlier about the inheritance pattern. I wanted to tell you how incredibly impressed I am by your devotion to Diana. One of the things that has been hardest for me to accept was putting my mother in a nursing home, and one far away (to save on cost) at that. I told her when she was diagnosed that I would care for her at home.
I didn't. I couldn't. I wish I could say this was just for pragmatic reasons, but I cannot. I could not keep enough emotional distance from the disease to be with her and not be swallowed up by it. We considered moving her to a nursing home closer to us (She was in TX), but neither I nor my family felt confident that I could maintain enough emotional distance to take care of my two children if I knew she were so close and I was not with her most of the time.
This is true even after my brother and I were fortunate enough to test negative for the gene. I was with her the few days before she died, and I'm so grateful for that time.
My heart goes out to you and to everyone struggling with these issues
Liza Mundy: I'll respond to this since Dave is busy with a couple of others. Thought I am no expert, it strikes me that many people may deal with guilt about institutionalizing a loved one, but the fact it, there often comes a point where for so many reasons, it is the best and perhaps the only real choice. I think that social workers for nursing homes confront this all the time; I certainly got that impression when we visited Terence Cardinal Cooke in Manhattan. The staff there urged Dave not to feel guilty if at some point he no longer felt he could do this in his home. I wish you all the best.
Derwood, Md.: Dave, we have much in common. I am also a caregiver to my husband. The health conditions between your wife and my husband are different but the way we handle our lives are the same. I've been married for 26 years; 14 years ago when my husband was 49 and I was 39, he was diagnosed with a congenital heart defect that resulted in a massive stroke that left him disabled and unable to work again. He and I both worked at the Defense Mapping Agency too. I admire you. Your article has proved to me that I must be more patient. If you are open to talk or email, please contact me.
Liza Mundy: I'll post this since Dave is busy. If you want to send your contact information to me at email@example.com, I'll forward it on to Dave.
Cooperstown, N.Y.: I took care of my husband for 13 years, until his death, after he became a quadriplegic following an automobile accident, We had no children or other nearby relatives, and very little money, so I relied on state-provided home health aides and the occasional friendly visitor to give me some time off. Thank goodness for Netflix!
My point, though, is that I did this because it was the thing to do; and religion did not enter into it. While I'm glad Dave's faith is a comfort, trying to figure out how God decides to whom such things will happen would drive me absolutely nuts. Stuff happens. We deal with it. The end. But I do wish them well.
Liza Mundy: Dave and I talked about this issue--the fact that for him, his religious faith provides him with a code of spiritual ethics, but that other people are going to find this same kind of strength in different places, not necessarily from Christianity or even from religion. He certainly agreed with that. He does tend to think--as he says in the piece--that pure love isn't enough, and that a person, to get through this, will need to draw from some ethical or moral foundation. This is the kind of thing he likes to debate; some may think that love alone will get you through!
Washington, D.C.: Richard from wellspouse.org
Yes, family caregiver is actually a "catchall". It includes anyone caring for a spouse or partner, child or parent or friend or sibling.
The statistic about more men leaving a marriage than women, may have validity for the overall divorce rate of 50% of marriages, but there are no figures for male spousal caregivers who leave their ill spouses, vs. female spousal caregivers. There is an overall "guess" that _at the time of diagnosis_ about 75-80% of marriages/relationships break up, so spousal caregivers like Dave and myself are part of the 20% who stay, and complete "The Vow"
Liza Mundy: Thanks, Richard.
Washington, D.C.: Comment for after the chat:
Liza, if you are going to put up a resources list of Web sites, another org. that might be useful for people in the situation of one of the last posters is http://cfad.org (Caring From a Distance). It's for people who are caregivers for a family member, friend, etc. who lives more than 50 miles away, and is good for information and referral.
Liza Mundy: And thanks for that.
Washington, D.C.: Murrey Jacobson, writing back again from Huntington's Disease Society of America.
Reading through the online posts from so many people today, it is incredibly moving to hear of how people are dealing and battling through this so much.
I am also struck by the fact that we should try to find new ways to marshal the voices and actions of our local community. I just want so many of you to know we are eager for your help to raise awareness and to fight the disease. If you want to get more involved in helping us with that, we would love to get whatever assistance/ideas you might have. Don't hesitate to write me personally at MurreyJack@msn.com.
Liza Mundy: Thanks so much, Murrey. We are over time, but there are other responses I will also try to post.
Fairfax, Va.: Dave is a member of my Well Spouse support group. I want to say that he is a wonderful role model for others in our group. His pragmatism, emotional balance, and "can do" attitude are qualities that I strive to emulate in my own caregiving situation. Thank you, Dave!
Liza Mundy: Dave's computer has stalled out so I'll post some of these comments, for the record, without comment from myself.
Severna Park, Md.: I'm curious about one thing. Given his religious faith and his experience with Huntington's Disease, what are Dave Kendall's thoughts about stem cell research, which offers the only current hope for finding a cure?
Liza Mundy: Are you sure that stem cell research offers a potential cure? I talked about this with Dave and he wasn't certain that it's one of the disease that could possibly be cured through embryonic stem cell research. Murrey, do you know?
Springfield, Va. : Powerful article for sure. Thanks so much for sharing your story. My spouse also has a progressive disease, and we are now discussing whether we will attempt to have children while she is still healthy enough (we're both mid-30's). What scares me is the enormous cost of both raising children, and the costs of long term care down the road should I not be able to care for her anymore. We do not have a long term care policy because my spouse does not qualify due to her disease. Any thoughts?
Dave Kendall: What a powerful question. As you know, there are no answers. You have to really think this out one and, whatever you decide, be prepared to accept the commitment.
A counselor or support group might be helpful.
I am always glad to talk.
Liza Mundy: I agree with Dave: excruciatingly difficult dilemma, and a support group, while it can't solve the problem, may be very helpful--or meeting with a therapist who specializes in these issues. Good luck.
Alexandria, Va.: I was diagnosed with a progressive, chronic disease years ago. I've been divorced since 1990, for reasons unrelated to my disease. I pretty much raised my 2 kids, with lots of help from them. One left town, the other stayed with me.
The one with me is now in her late twenties, feels she lost her youth, and needs to leave for a while. I will probably live a long time.
I am looking at aides, etc. to see how to stay independent. This is quite a confusing time for all of us. Any comments, suggestions?
Liza Mundy: Dave might not be able to get to this one, so I'll post it, and urge you to get in touch with the caregiving organizations that are cited in a box accompanying my article. Even though you are the one in need of care, it strikes me that they should be able to help, and to offer support and advice.
Washington, D.C.: I noticed that the Kendalls have one child, who must be 30 years old now. Yet, except for one photo of her as a baby with her parents, she isn't mentioned. Did she specifically want to be excluded from the story so that she wouldn't be discriminated against as a possible Huntington's sufferer herself? Does she help out her parents in any way?
Dave Kendall: Yes, we wanted to preserve her privacy. It is such a huge decision and involves more than a simple test. It is a monumental choice.
She is very helpful. She offered to visit nursing homes with me, etc. She calls often, but she is some distance from us. She has a beautiful spirit about this difficult illness. I appreciate her help.
Pittsburgh, Penn.: What a moving story. Mr. Kendall, could you let readers know whether your daughter has been spared this illness? And also, if you would, how your wife's family had gone so many generations without realizing there was Huntington's in the family.
Dave Kendall: We do not know the history of her father's family. We know his mom died at a young age, but supposedly of typhoid fever or something like that.
Her dad appeared to have Alzheimer's later in life along with other problems. Looking back, I "think" he had late onset.
As I said earlier, our daughter is at-risk, but the decision is huge. We discuss it often. She is a wonderful, supportive person, who understands life far beyond her age.
Springfield, Va.: Hi, this is Brad. Liz and I appreciate the great, balanced, illuminating story as well as both your and Diana's steadfastness to the vows of marriage. I am biased, but I believe it is a role model for us all. We are proud and honored to call you family, no matter the situation.
On a lighter note, you are welcome to borrow my truck to tow your boat and go fishing anytime you want. If you have to, sell your truck, but keep your Mustang!
Liza Mundy: I just have to post this. I agree. He should keep the fastback. Rangoon red, FYI.
Hanover, Penn.: Certainly the Kendalls' daughter has the right to keep her identity private, and you are right to maintain here privacy. But, if the Kendalls were my parents, I would be shouting this amazing tale of love and devotion from the rooftops! I've run this story off the computer on high quality paper and plan to keep it forever. I hope you'll be able to provide updates and that they will, to the extent possible, be favorable.
Dave Kendall: This illness has made us so much closer to our family and daughter. We discuss life issues until we are exhausted.
I am so glad you found this helpful.
Liza has been great.
Puyallup, Wash.: I'm reluctant to even suggest this, but I'm curious as to what arrangements have been made to deal with the situation where Dave might no longer be able to assist Diana.
Dave Kendall: I have begun the process of looking at nursing homes. I think we are OK for now, but anything can change. That is one reason why we visited Terence Cardinal Cooke, to see what a gold standard facility looks like.
I have to come to terms with that reality.
Arlington, Va.: You are an amazing man. Thank you for sharing your story and reminding me to value every second of my life and my marriage as I know it now.
Dave Kendall: Live every day to make a difference in someone's life. You sound like a super person.
Alexandria, Va.: The writing by Liza Mundy is some of the most poignant I have read and the pictures by Carol Guzy are superb. Dave, this is a sensitive question, but why is your daughter, who visits, not more involved in Diana's caregiving? I ask this not in a judgmental way at all, but to learn. I have spent 22 years feeling guilty that I didn't go (300 miles) to even visit my mother when she was ill with ovarian cancer because I was involved as a caretaker for other people's children.
Dave Kendall: She is married, works long, stressful hours, and cannot get to our home on weekdays in less than an hour. I hope and pray that she understands how much we appreciate her. You did your best. Part of coping with this is understanding that we did all we could. No matter how hard I try, Diana will pass away. I, myself, despite giving all of my strength, have to realize that I gave my best. If you really stand back and look at your life, you will know you did your best. Caregivers are their harshest critic. Please give yourself credit.
I have learned that support comes in so many ways. Our daughter talks with me for hours. She helps me think straight, as does all my family. I love them.
Diana's level of care is such that it takes a LOT more than most people can provide.
I hope this is a good answer.
Dave Kendall: I hope that Liza and I have answered all of your questions.
I'd love to talk to everyone who wants to follow-up later. Please send your questions (e-mail, etc.) to Liza and she will get back with me.
Your comments and support have been so rewarding.
Thanks to everyone.
Liza Mundy: Thanks to everyone who wrote in, and to Dave. It's been a pleasure to get to know him, Diana, and their family. Thanks for the thoughtful comments, and we'll wrap it up now.
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