“They don’t take care of themselves.”

This has not been an easy post to write, since it deals with some basic fears and concerns of those who are living with someone with a chronic condition. However, the issue of change has come up so much in the last month, I would have been remiss if I didn’t try to write about it.

So what do you do if you are partnered/married to someone with a chronic condition who refuses to take care of themselves?

The situation I’m describing is one where the person knows their diagnosis, has been told of the risk factors yet continues to engage in behaviors that are counterproductive to their health. This is not a situation where the person has dementia or some other problem that clouds judgment.

This is also not a situation where a person’s chronic condition has progressed to the terminal stage, where stopping smoking or eliminating the offending behavior isn’t going to make a bit of difference in outcome. Sadly, families and friends, who are stressed by the pending demise of someone they care about, do make caustic comments. This is also not part of today’s post.

Note: If they are endangering themselves by cutting, taking pills or some other highly destructive behavior, call a crises center or 911 immediately. It may be a “cry for help,” but people can die in these situations, so err on the side of caution.

Over the years I’ve heard many variations on the lack of self care -he/she wont keep their medical appointments; she still smokes even though she’s had a heart attack, is a diabetic or has/had cancer; he’s 100 lbs over weight if he’s an ounce and he had bypass surgery a year ago. The examples are endless.

These observations aren’t just made by family and friends, but also health providers, who do question at times whether they should be treating a patient who is unwilling to change.

Do any of these comments sound familiar?
• “He smokes and coughs like he is dying. I told him I’ve been a caregiver all my life and I don’t feel like seeing you die.”

• Responding to “I’m going to live my life as I want to and if I die, just bury me,” by saying, “that’s fine, if you want to die. Keep doing what you are doing and that is exactly what is going to happen. Better yet, maybe you won't die and you will have a stroke and have to live crippled and in a wheel chair the rest of your life.”

• Go together with your husband to see an attorney. Have him/her draft an advance medical directive (living will), a regular will and something for guardianship of your children (should you pass away as well). Then go together to visit an insurance agent and up your husband's life insurance policy. Then call a funeral home and price out the options he'd like, along with discussing arrangements for the service -- pallbearers, hymns, etc. Explain to your husband that since he seems intent on slowly committing suicide, the least he could do is get his affairs in order so that his eventual early death won't be a logistical nightmare on top of the emotional gut punch.

Do you think any of these spouses changed by hearing comments like this? Maybe, maybe not.

So how do you get them to give up unhealthy behaviors? This is a question that I have spent many hours exploring while doing HIV prevention. Without a doubt the most important thing to recognize is that you can’t change anyone. You can only change yourself.

You can change how you respond to them, which might impact their behavior. You can decide to stay with them or leave. You can figure out how much time and energy you have to spend on trying to motivate them to change. You can determine what type of impact of being a motivator is having on you and whether this is something you can sustain. At the end of the day, they get to choose whether they change or not.

Working in AIDS, we were constantly attending lectures on behavior change theory. What I came to believe was what I call the “law of substitutions”-people don’t change and sustain a behavior unless it can be substituted by one perceived to be of equal or greater value. Further, root issues need to be dealt with, often times before new behaviors can be introduced. A man is spending many hours a day in the sex clubs immediately following his partner’s death from AIDS. Teaching him safer sex techniques, no matter how erotic and enjoyable, isn’t going to change his behavior. However, grief/loss counseling and support just might slow him down. Over time, the combination of both interventions might sustain a long-term change.

Another example is a person who losses 100 lbs. They feel terrific, have a new social network and receive complements every which way they turn. Is this sufficient for them to maintain the weight loss? For some it certainly is, particularly if they are part of a program, such as Weight Watchers. For others, feelings of inadequacy, anger, fear or anxiety can take them back to known comfort behaviors of excess eating, particularly after people cease telling them how fabulous they look.

Motivating people to make changes in their life can be inspiring as well as discouraging. However, it’s one thing to do this as part of your job, it’s another if it’s your spouse/partner or close friend.

People living with chronic disease may be angry, frightened, feel vulnerable, chose to live in denial, or experience a host of other emotional responses. These are very real and difficult issues for them to deal with and shouldn’t be dismissed. These are often “root” issues and they may need help in addressing them before the unhealthy behavior can be eliminated or reduced. However, it’s still their issue. As much as you’d like to “kiss it and make it all better,” you can’t.

Encourage them to attend support groups, go to medical appointments with them, be the “friend with a pen,” learn as much as you can about the condition, and participate in caregiver support groups. However, feeling sorry for them, or making excuses for their behavior doesn’t help in the long run. It may just delay their getting on the right road to self-healing. Being a supportive spouse/partner or friend does not mean becoming a nag or turning your life upside down to the point that you’ve let their self destructive rule your life as well as theirs.

With that noted, here are some things to consider when trying to understand how to deal with someone that refuses to take appropriate care of themselves:

• Is there a possibility that the behavior you are seeing is a result of an underlying undiagnosed condition?

• Has the person been counseled by a medical provider? Do they participate in a support group or in some way discuss their problems with people, including medical and social service providers, who are familiar with their issues?

• Are there any behaviors on your part that are not supportive of your partner/spouse? For example, if they are being treated for high blood pressure, do you serve salty foods or have a saltshaker on the table? Do you say to them “you need to go for a walk 30 minutes a day” but don’t exercise yourself or offer to go for a walk with them? For a present, would you give them a two-pound box of chocolates knowing that they shouldn’t be eating it?

• Have you discussed your concerns with your spouse/partner? If yes, do they acknowledge there is a problem? Are they willing to work with you and/or a neutral third party to address them?

If your partner/spouse is unwilling to acknowledge there is an issue and/or doesn’t want to work on it, you’ll have to decide what impact this will have on you. Is it healthy for you to watch them self-destruct?

If you find you continue to stay with someone engaging in unhealthy behaviors, you need to start looking at your reasons for doing this. Does “caring” for someone at this level give you a sense of purpose? Is being in a relationship of any kind more important than not having one? Do you believe that you’ve invested so much time in the relationship you can’t imagine being without it? Are you financially dependent on your partner/spouse?

There are many instances of partners/spouses and even medical providers who finally just say, “I can’t do this anymore.” This isn’t necessarily a threat, but rather a decision not to be a party to destructive behavior. This is a critical wake up call for all involved. Sometimes the couples separate and they do better apart then together. Sadly, there are instances where the person doesn’t modify their behavior and they do end up dying or living a very compromised life. More optimistically, there are lots of cases where both parties make changes and the relationship grows.

If you do come to a place where you need to say, “I can’t be in a relationship with someone who is engaging in such self destructive behaviors,” and then don’t follow through when no change occurs, you are setting yourself up for a cycle that is going to make you both miserable. Don’t make this type of comment unless you know you can carry through with it.

Some take home points:
• The only behavior you can change is your own. By modifying yours, you may notice a change in your spouse/partner.

• If you can’t accept your partner/spouse the way they are, give them the distance you both need.

• It’s not how we think, feel or say, it’s what we do that matters.

• Ultimately it’s their life and their choice. It’s your life and your choice.