Caring for a loved one in pain. The spouse of a chronic pain patient.

[mmglobal]

I received this email today:

Dear Mark and Diane,

It's taken me some time to find you. I just wanted to say thanks for helping to save my marriage and many others. Over a year ago, I happened upon a post of yours on ADR Support. You described what was happening to your family and shared a letter that your wife had written. There was so much packed into that one story. At the time I discovered your post, my family was coming apart. It seemed that you and your wife nailed exactly what was happening to us. I printed it out and shared it with my wife. After several long cries and many soul searching discussions, we came to realize how much of our relationship and family problems were directly related to my disability.

My pain management clinic has a program that includes physical therapy, biofeedback and weekly visits to a psychologist. After discovering your story, I asked if it was OK for my wife to come to the psychologist with me. We told the psychologist about your story and she asked to read it. My wife had the printout in her purse. I was very surprised to see the tears running down the face of the psychologist as she read it as she had never shown any emotion before. She asked to keep it. Months later, I was seeing the pain doc and the psychologist flagged us down and thanked us again for sharing your story. She was using it in treating her chronic pain patients and was having wonderful success. She was encouraging depressed patients, or those with relationship issues to bring their partners with them to some therapy sessions. She said that dealing with caregiver support issues and relationship issues, instead of just focusing on the patient was making a huge difference for many of her patients and their families.

Some months ago, I was telling someone about this and they asked to see what you had written. I sent them to ADR support and told them what to look for. Several months later, I ran into that person and they told me that they were never able to find it. I looked and looked, but never found it either. Fortunately, I still had copies, but was never successful in finding it online again. What happened to it? Last week I was talking to another patient in my pain doctor's waiting room. He knew all about you and gave me your email address. I'm so glad that I'll finally be able to talk to you.

I guess this is a long way of telling you how I got here. Sorry for rambling. I just wanted to make sure that you knew how important your post was to me and my wife and the countless others I know it has helped. It is not overstating things to say that it was instrumental in saving my marriage and perhaps my life. I've looked around your website and I think the work that you do is very important. I wish I'd known about you last year. I think that with your help, I might have avoided some poor decisions about spine surgery. Undergoing the wrong procedures with the wrong doctors have left me a chronic pain patient with few options. Hopefully, I still have a chance. You'll be hearing from me later this week.

Thanks again, thanks again, thanks again.

Rick and Mary L,
Boston, MA

Rick and Mary, thanks so much for the wonderful letter. Of all the things I've ever written, I think this is one that I'm very proud of. The conference in New York a couple of years ago was a wonderful success. Amazingly, with eight of the world's top spine surgeons speaking, the most powerful presentation was the one by my incredible wife, Diane. Not a dry eye in the house.

This is a very important topic and I now realize that I should have brought this to iSpine when I started it. I don't know why the topic was removed from the other forum. The thread was closed (without comment or explanation) so nobody could post to it... After it fell away from the front pages, it was deleted. I don't know why. If anyone learns the reason, please let me know.

Here is a copy that I saved. Unfortunately, I do not have the subsequent pages with more replies... only the first one.

There was also a thread on Braintalk with some wonderful replies. Unfortunately, about a year ago, all braintalk data was lost and has not been recovered. Fortunately, I was able to retrieve most of this thread from google cache.

Not all of us are lucky enough to have a supportive spouse or partner to pull us through our ordeal. I feel for those who don't. Many spineys loose their relationships as the years of disability wear on, and layers of depression, anxiety, drug dependence, codependent issues, etc... complicate matters. My hope is that with some attention to caregiver issues, many of these relationships will be repaired. If you still have a supportive partner, make sure that you get to understand how severely their lives are impacted by your disability. Make sure that you do what you can to make the lives of those around you easier... Our lives revolve around our spine problems... their lives should not.

In the years since the GPN International Spine Patient Symposium, reactions to this have been very powerful. When I send a link to chronic painers, they often believe that I'm sending something that will tell their spouse how bad things are for them. Really, I'm telling them how bad things might be for their spouse and family.

I hope more people find this useful as Rick and Mary have.

All the best,

Mark

[Roblin]

Thank you Mark and Diane for sharing this beautiful letter about caregiving. It was a tear jerker for sure. What a wonderful reminder for those of us in chronic pain just how much it hurts our family and what sacrifices they have to give in helping our lives to be a bit better.
Thank you again so much for sharing this with the community!
Roblin

[wendy]

mmglobal

thanks for this, at easter my husband nearly left me and i think there should be more out there for the spouses and familys i have 2 kids 4 years and 6 years and thats the worst thing about pain is them as they miss out on so many normal things, as for the husband he feels useless and cant support his family we are now in the process of losing our house, but thats life and like i said i think they need the support too.
its a very emotional letter to share and thankyou and yes i did have tears in my eyes. X X
thanks
wendy

[mmglobal]

Wendy, when things were bad for me, I remember having thoughts like, "my family would be better off without me." I was able to recognize that is the depression talking... not me. I had avoided anti-depressants for many monts as my pain management doc and wife had been telling me that I needed them. When I realized how bad it was getting, I started on them and they were very effective for me. For about 2 years, they were a very important part of my treatment regimen.

This is an important topic for the patient community.

All the best,

Mark

[wendy]

mm global
hi i guess from my post you can tell it is getting me down, and yes i did try anti depressant tablets but with the opiods and morphine and the anti sickness i was real sick which as you know is no fun when you cant support yourself to sick over bowl or toilet and very messy, so had to give up on them but did try.
the thing that annoys me is the nhs here in england as most people in america dont have to wait like i am and i think thats the problem, they shouldn't be handing my all these drugs( which if i dont take i cannot walk)
they should be doing something about the problem,as now not only will i have to recover from op i will have to ween of medication, if i am late taking a dose now i am real ill.
speak soon thanks
wendy x

[mmglobal]

Wendy, I'm so sorry that your system does not allow the ready access to care that we should all have. It seems that these issues are getting worse and worse all over. I hope you can get your med issues sorted out soon. I'm glad that this topic is getting some attention. While we may not be able to solve many of our problems, I think that greater awareness of depression, caregiver and family issues will help us to deal with these issues more effectively. Also important is to understand how huge a component these issues can be, and that they can be a major factor in our pain levels... functioning levels... etc.

Good luck... please keep us posted... all the best,

Mark

[dshobbies]

I am so enormously grateful to my husband and though I tell him, he'll really never know.

I've seen the anger and hostility in some that were no longer healthy and somewhat or fully incapacitated. They tended to take out their frustrations on those closest to them. I saw my father treat my mother quite badly after his bypass surgery until hating myself, I intervened by yelling at this very sick man.

I swore I would not lose my patience and treat my own husband badly but as a woman, I suppose I was able to cry - a lot. It's a difficult situation when a loved one is chronically ill. It is a lose/lose situation and I am pleased that I can now help out another family suffering similarly. Small gestures like going to the market or Target, or even cooking a meal are so appreciated.

It's too bad for too many that they have to live through this experience before they understand that these little gestures that make a big difference for everyone.

Wendy, I so wish you and your husband an easier time. We're also here to support each other so please post as often as you want. Venting to others can relieve tensions and knowing you're not alone, that others have walked in your shoes and come out whole gives you hope.

My best to you, Dale

[mmglobal]

Great post Dale.... reminded me of something that's relevant here.

After one of my trips to Germany with clients for their surgeries (not yours!), I was laying in bed with Diane and I said, "I hope that I wasn't bitchy and nasty to you the way that some of the spineys I see are."

She clearly did not understand the question or read the script. The correct reply was... "no dear, you were wonderful." Instead, she said, "you were pretty tough to be around at times... " We talked about it further.

I wish I could say that I was stoic and that I did not let my years of chronic pain, disability, frustration, etc... make me a curmudgeon that was not nice to be around... but at times it got the best of me. I'd like to think that those times were short and infrequent... but this topic would not exist if that was true.

Mark

[Tbackpain1]

From Medscape, Med Students

How Do Couples Cope When One Partner Has a Chronic Illness?
Posted 01/13/2009

Colin T. Son

The Internet has played an important role in creating an informed and empowered patient population. Blogs, for example, are oases where patients can exchange information and experiences.

One particular patient blog, In Sickness and In Health In Sickness and In Health: A Place for Couples Dealing with Illness, has a unique focus. The blog's author, Barbara Kivowitz, wants readers to understand that chronic illness is rarely, if ever, faced alone. Rather, it touches the lives of everyone around the patient, especially a significant other. She should know, as she has gone through it personally. Ms. Kivowitz recently described the difficulties that couples often face in dealing with chronic illness and shared her advice, based on her own experience, for dealing with those issues.

Colin Son: Dealing with illness as a couple is one of the main topics in your blog. What do you think is the single most important piece of advice that you can give to a couple dealing with a chronic disease?

Barbara Kivowitz: Surprisingly, the topic of couples and illness is one that has not received much study or attention.

When you're in a relationship and serious illness hits one partner, both lives are dislocated. The changes are profound ones. Illness becomes the uninvited third party in the relationship and inserts itself into some very tender places: into the image partners have of each other, into the activities and routines that the relationship depends on, into the kitchen, and into the bedroom. Doctors, drugs, hospitals, and healers become part of the substance of the relationship. Illness gets to make decisions that once belonged to the couple -- decisions about work, travel, finances, and family. Pain and exhaustion take precedence over desires and chores. What was once a relationship of equals often becomes one of caregiver and patient.

The question that is central to my quest is: How can a couple achieve a new kind of balance, one that accommodates the reality of the illness but also maintains a balanced partnership?

The key is communication.

The most important advice I can give couples dealing with illness is to talk to each other openly and honestly about your experience of the illness. Talk about your feelings and ask for what you need and what you don't want from your partner. Too often, without communication, the well partner comes to see the ill partner as not trying hard enough, and the ill partner comes to see the well partner as just not understanding. This can foster resentment and distance. Communicating recreates the connections that brought the couple together in the first place and builds a stronger foundation for both people to stand on to deal with the illness together

Colin Son: Can you tell us a little of your own story? What brought you online as a patient?

Barbara Kivowitz: Prior to the onset of my pain condition, I had been a business consultant, writer, and psychotherapist. Richard and I loved adventure and had taken a year off to travel around the world. All of our vacations were built around hiking and mountain climbing. Illness upended our world and left us floundering.

Like many other sufferers, I went from specialist to specialist to find a diagnosis and treatment approach that could offer me a livable life. Richard became my anchor point. His scientific mind and problem-solving skills often helped me find a path out of my confusion and fear. His kindness and love could, at times, lift me above my pain. He took on all the household responsibilities I could no longer do. And, while he was doing all of this for me, he was living in his own hell, the hell of having a wife who was slipping away to illness.

The couple relationship is an additional casualty when illness hits, but it can also be a vessel for healing. I began blogging about couples and illness because I found little on the Internet about this topic and wanted to share my experiences and learn how other couples cope with illness. I have learned from and been moved by the stories of despair and of renewal that I have heard from readers of my blog.

Colin Son: How has your time as a psychotherapist shaped your experience with your illness?

Barbara Kivowitz: There's nothing like the real thing. As a psychotherapist, I worked with patients who had physical and mental illness. I even worked with victims of political violence and with a hospice program. I helped my patients grieve, cope, find resources in themselves and in their communities, and rebuild. But it wasn't until I got whacked with my own illness that I truly understood how violating, grievous, and burdensome illness is, to the patient and the partner.

Colin Son: What are some posts that highlight the relationship between patients and their significant others?

Barbara Kivowitz: I did a series on How To Have the Hard Conversations In Sickness and In Health: A Place for Couples Dealing with Illness: How to Have the Hard Conversations, which I hope readers found helpful. My favorite hope post is about An Unexpected ConversationIn Sickness and In Health: A Place for Couples Dealing with Illness: An Unexpected Conversation in a Waiting Room: The Hope Pyramid in a Waiting Room. One of the most amazing stories I heard and wrote about is A Story About Alzheimer's: Paul and Mary In Sickness and In Health: A Place for Couples Dealing with Illness: A Story about Alzheimers: Paul and Mary, about how one couple coped.

Colin Son: Any final thoughts?

Barbara Kivowitz: When couples face serious illness it is grievous, but it is also an opportunity to learn how to be with each other on deeper levels. Before illness, the couple can cruise along adapting to circumstances in the moment. After illness, the couple needs to be more intentional and candid. But the effort made to build new habits, to assess responsibilities and lifestyle, to communicate with authenticity, and to become more conscious about adapting to changing circumstances will strengthen the relationship in ways that reach far beyond the illness.

On January 13, 2009, Barbara Kivowitz will host Grand Rounds, the weekly collection of favorite posts submitted by medical bloggers. This weekly blog carnival gives you a chance to sample many different blogs while also getting to know the host blogger.

I hope this helps folks here on the forum. All too often, the stressors of a chronic illness can exacerbate the "normal" stressors of a relationship. I can only echo the author in stating that communication is key.

Be Well.

Theresa

[Eastex]

Mark,
Thank you for guiding me toward the letter the other day. We both read it that night. As you know, my wife and I are going through troublesome times. I am hoping the letter opened her eyes to the reason why I have been such an a**hole the last year. Well, let me say more than usual!! I try to catch myself when I act like this, but sometimes it is too late. I have said a lot of things that hurt her during my times of pain or under the influence of meds. I have said some bad bad things. Sometimes I won't remember all the details. I just hope that I haven't gone too far this time. Please keep us in your prayers. I don't need the support now, we do. She is my everything and I will make sure that she knows that from now on.

[ans]

I relate. When in pain or messed up/spaced from my meds, I get real short. My partner is very compassionate and understanding but truly doesn't get it - that I have days where I simply cannot think straight or write strongly for hours like I used to do. She is baffled and angry at my slowness which is academically hurting me.

ans