In the past 35 plus years of intermittent caregiving I have involved in, there is nothing more heart wrenching, nothing more terrible, no ache deeper to me than watching someone refuse to do the things that will at least give better health. The first issue that comes to mind for me, due to my experience working as a counselor with drug addicts and alcoholics was, of course, the drugs and alcohol. But it does not stop with those two major glaring addictions. There are the ‘innocent’ addictions such as smoking, food disorders, and the abuse of medications.
These issues were brought painfully back to my attention recently as a man our church ministry group had ‘adopted’ as a friend and a member of our group. At 60 years of age, he has been dealing with Polio his entire life. In spite of the very real and painful effect of the heroin he has used in the past, the hold it has had on him has been more powerful than his desire to avoid the intense pain it brings when he dips back into that lifestyle of the addict again. One of the pastors who is often very regular in his visits and help for the man has called me at times and just asked me to come and visit. When we sit down and deal with issues such as wheelchair repairs, cushions, shower chairs and all the other issues a 60 year old dying man is facing we will inevitably come to the place where we are discussing the heroin abuse, the drinking, and the smoking. My pastor friend will put his head down after awhile and weep for the man. It does not matter how much we ache and hurt, he will fall back into the bad habits over and over. So we watch him die, by self-destruction through the intake of the very chemicals that are aggravating the crippling deteriorating effect of the Polio.
I referred to the “innocent” addictions, but they are anything but innocent in their effect on the patient. We get shaken out of our complacency at times by the horror stories. One gentleman in our local area insisted on smoking even though he was on oxygen. He managed to go for several years wheezing through his Emphysema and COPD while smoking and having the oxygen feeding into his nostrils, when one day his cigarette ignited the oxygen and literally tore his nose and nasal passages open with the resulting explosion.
I have often felt frustration that bordered on despair when dealing with some patients because they would absolutely refuse to quit the self-destruction.
There is no easy decision or solution that will end the abuse of self by a patient. It is more than the addiction for most. There is a myriad of issues that cause people to self-destruct. One of the big causes is the pain some of the patients feel. If a person is dealing with constant and continual pain, the patient will often self-medicate.
One huge issue I have encountered is the issues that mental illness will cause and how those mental health issues will cause such depression and despair that the patient will give up on life.
I still struggle with knowing how to lead someone into a healthier lifestyle that does not contribute to health problems already happening. It is easy for those people who want to get well or at least maintain their health as good as it can be. The difficult ones are the people who have been told by every doctor who sees them that they need to stop the particular behavior they are indulging. That is hard enough when a person is a paid or contracted caregiver. But when the person who is destroying their health is a loved one, it is infinitely worse. Watching a loved one slowly self-destruct is brutal. It gives a whole new meaning to the subject of emotional and mental abuse. I confess that is often where I have been with people I have cared for.
From my mother who stayed with me for a period of time on two different occasions, and hated doctors so she wouldn’t go unless she was on the threshold of death’s door, and the close friend who smoked in spite of having cancer right up to the end when the fluid in his lungs actually drowned him.
I think the most painful words were, “Well, at least I am not an addict” or “At least I am not an alcoholic” or insert your own experience here. This issue of dealing with emotions and mental and willful decisions are real challenges to a caregiving/patient relationship. If the patient is dealing with chronic pain, the addiction is often going to increase the pain levels they are feeling.
I know we often don’t associate overeating with addiction, but it is another huge issue when dealing with patient health. It can also get dangerous. I have built wheelchair ramps for families where the invalid was so overweight that the caregiver was injured during the transfer of the patient from bed to wheelchair or from wheelchair to vehicle etc.
What can you do? Sometimes nothing! Not a thing, but just standing by helplessly watching death slowly brought on by the wrong behavior. But other times real solutions can be realized by checking off the factors that can trigger wrong behavior. There is some pain that is incurable. No medication can touch it and ease it, so trying to help someone control narcotics to ease pain is going to be difficult to impossible. But we should always try. Every patient is different. So sometimes a medication that works well for one person will not work for another. Talk to doctors treating the patient. Make sure they have a good understanding of the home life of the patient, and of when and how bothersome pain cycles are when they occur. Doctors can certainly do more when they are aware of the whole picture rather than fragments and bits and pieces of the patient’s life.
Here in New Mexico, many medical facilities are beginning to address mental health as they treat chronic illnesses. Thus, they are able sometimes to deal with the issues that trigger abuse of drugs or alcohol as a part of the overall treatment of the family. Depression and PTSD for soldiers returning from combat are big issues. If a soldier goes away in the prime of life and healthy and returns with crippling wounds, there will be huge issues with self-esteem and with self-confidence. Not a big deal for someone who has never really had their world rocked to the core but huge to a soldier who has suddenly found that many things are now out of reach physically.
And whether we like to think about it or not, the lack of self-esteem and self-worth with the disability will drive some to suicide. Many people do not have the will-power to kill themselves outright, but they will give up on life and they are committing suicide all the same. They give up and start to abuse alcohol or drugs or smoke or whatever the drug of choice is, and see no reason to stay clean because they tell themselves there is nothing to live for.
At the risk of appearing to be more pastor evangelist than caregiver here, one of the most effective solutions I have seen work over and over is the spiritual reconciliation of the patient with their new reality. A strong faith coupled with even a glimmer of hope has often transformed a patient I have helped on occasion. The most important thing to remember in all this is not try to force the patient to change. Instead, lead the patient by gentle and yet firm guiding standards and boundaries that let the patient know that you love them and care for them so much that you will be strong for both of you and set a course for the right life-style and behavior that leads to better life.
Avoid going it alone. I have found I need the others in my support group as much as they need me. Above all, keep your own health good by taking care of you and in dealing with addictions, set the example by not indulging in the wrong things yourself. It will do wonders for a lot of patients if they see the things you preach to them practiced in your own life.
My husband had a stroke and heart attack from alcohol abuse, cannot walk, is incontinent and has advanced vascular dementia. He is in sub acute care and has physiotherapy treatment every day. He screams that he wants to come home – while at the same time begging me to bring him beer. Sometimes the sub acute staff have to restrain him because he becomes abusive and wants to get out. It gets depressing to go and see him. I resent him inflicting this state of affairs on both of us in our retirement. There are some people who are surprised and accusatory that I don’t love him anymore when he is clearly suicidal. It’s between him and God, not between him and me anymore
Have the opposite problem with my Uncle.
My sis, wahhh
I’ve had many, many patients who refuse to give up their habits that are killing them. Diabetic with the attendant health problems who drank regular Coke and smoked all day. One who is hospitalized for respiratory failure and continues to smoke and try to get narcotics from every doctor she sees.
For my husband, his issues began as a vascular condition in 2005. His current issues came from that! His vice was & is smoking! That monster won’t release his mind!
I’m facing this now, less than a year after losing my husband to cancer.
My husband’s habits literally killed him. I did everything I could but at the end of the day, only the person themselves can make the change.
Sometimes it’s best to leave it alone. Harping on them only makes it worse.
Agree. You can’t control everything.
For me, it’s learning the balance: how far do I push or just let go.
Yeah plus depending on the situation, let them enjoy their darn wine and bacon! (Or whatever!)
Well said, does it really matter when the person has a terminal disease with no cure or treatment? Let them enjoy what ever little time they have left.
I wrote a post but it said timed out ,as a addict and a caregiver seeing bothsides to the story ,thank you for bringing this topic up it is a reality for many .
When I worked in a Faith based drug rehab program as a counselor for awhile, I saw this kind of behavior destroy families and eventually take the life of the patient. It was during that time that I began to learn to find motivation to lead the patient away from the wrong behavior. It was a tough job, not due to physical strain but the mental and emotional strain was heavier than many counselors could bear. But we also had success stories. One thing that I learned is to make life worth living. If we put someone in a space with their bed and just treated them almost mechanically, it would sometimes accelerate the self destructive behavior. We learned to get the patients involved in learning, like finishing a school course or degree, studying or playing music which did wonders for a lot of them and some were doing artwork. Music and art were often the venue that would lead to much faster recovery. I am still learning and still trying. It does get easier if we something to offer to replace the addictive behavior.
Good discussion of one of the more frustrating aspects of caregiving.