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

[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