Well Spouse Caregivers: Do You Ever Say, "Enough!"

The piece below is one reader's comments to my blog post about back pain. I post it here because I think she not only raises a crucial question about the caregiver's responsibility, but she does so with great awareness, openness, and articulateness. And she is asking for support and advice. So please, if this piece speaks to you, help her out by sharing your experiences and ideas. (btw - she gave me permission to repost her comments here)


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My husband and I have been married 18 years. He was in a car accident 12 years ago that left him with chronic back pain. After several surgeries he was left with a failed fusion. We seemed to muddle through our new life ok for a while. But as of late I see him diminishing so much mentally.

We have two children that he simply does not have the "energy to parent" and my emotional needs were put on the back burner many years ago. I have voiced all of this to him repeatedly over the last three years but nothing seems to have the status that his pain has in his life.

I am 38 and he has basically turned our bedroom into the extent of his accessible world. Recently he went past my limit and I had to ask him to leave. He has been living at another house for over a month. I just feel so empty of patience for him. I feel so uncomfortable about making him get out of his comfort zone. But at what point do you just give up when your partner can not or will not see past their own nose?

He is seeing a counselor and is on antidepressants since he left. He has always suffered from some level of depression but of course it is very severe at this time. He is upset with me that I am calling all the shots.

However when someone withdraws form life like he has, they force you into that position. You become the only one that is able to fill the car up with gas or make appointments or pay bills. Every aspect of life outside the house becomes your area.

I am wondering if between the medication, depression and pain (his counselor tells me that over time chronic pain patients brains can actually atrophy?) that he is just not capable of any husband responsibilities. And if that is the case what do you do with a man that is mobile but completely stagnant?

Is there anyone else out there on my side of the situation that has been married a long while still loves their spouse but is past lonely, past hurt, past frustrated? How are you dealing with it?

Patients For A Moment - A New Blog Carnival

This carnival is a rotating collection of posts by and about patients. Kim at Emergiblog has put together a great carnival. Have a look.

Relapse & Rebound

Well...I had to go way up on my meds. This recent pain relapse wasn't going to disappear with each out-breath of meditation or by visioning a river of healing blue water flowing through my body. I haven't been at this level of meds since I first developed my pain syndrome. Even though I feel grateful and lucky that the meds do work for me - I have to say, in all honesty, each step up, each time I spilled one more pill onto the pile, I felt a sense of defeat. I really don't want to be a person who is dependent on pills.

Richard is happy to have me back as a whole person rather than the whipped and broken puddle of a person I am when the pain takes over. He is glad for the gift of medication. I pinball from glad to mad to sad, and eventually let the medication ball drop into the gutter and get on with daily activities.

There is, I admit, a unique joy I feel when the pain recedes but is still close in memory; and the charm of daily routines is not yet faded by complacency and habit. In these moments I can feel delight in the mundane, and I can lean into that "glad to be alive" sense that only comes from having survived something terrible.

So I pour the pills onto my open hand, count each one, notice its size and color, toss them into my mouth, and send them on their journey with a big gulp of water and a sense of gratitude,... and resentment.

Mercy Killings?

What I would like to know is: have ever thought about suicide as a way out? Have you ever said to yourself, "I want this to end!"

Have you and your partner ever talked about this with each other? Richard and I had a suicide conversation after I had been in constant level 12 pain (on the 1 - 10 scale) for 9 months with no relief in sight and no healers on the horizon. I found it surprisingly comforting to know that I had this option. In fact, just knowing that I could walk through the door to oblivion gave me strength to continue to endure and seek more healers.

Do you think that suicide can ever shift from psychological pathology to reasonable choice?

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From an article on the Atlanta News on elderly mercy killings by Marcus Garner:

In a two-week period last month, murder-suicides claimed the lives of two Metro Atlanta couples in their ‘80s.

In both cases, the husband was the caretaker of an ailing wife. And in both cases, the man shot and killed his long-time spouse before turning a gun on himself.

Were these deaths the result of depression, some level of domestic abuse, or were they the actions of a benevolent, merciful spouse?

Edward Travis, 86, executed a carefully-thought-out plan to kill himself and his wife of 60 years, 85-year-old Anne, who suffered from dementia.

George A. Doby, 87, killed himself after fatally shooting his 85-year-old wife, Edna, who suffered from Parkinson’s Disease.

Experts say assisted suicides among elderly couples aren’t that uncommon, and such arranged agreements are becoming more popular in Europe. The Violence and Injury Prevention Program in Tampa Bay, Fla. estimated between 300 and 500 murder-suicide deaths nationally each year of people over the age of 55.

Maggie Beck-Coon, with the Georgia Commission on Family Violence, sees them as one person exerting power over another. “I’m very troubled by the whole language of ‘mercy killings,’ because I don’t think I feel comfortable with someone else determining when you should die,” said Beck-Coon said.

Dr. Patrice Harris, a psychiatrist and director of Fulton County’s Department of Behavioral Health and Developmental Disabilities, cautions not to rush to judgment, however. “Often times, when people are thinking about suicide, they are feeling hopeless and helpless and see no way out of their situation,” Harris said. In particular, Harris said taking care of an ailing spouse late in life can add to the day-to-day stresses many elderly face: losing peers and family to illness and death, retirement, or dealing with one’s own deteriorating health.

Relatives of the Travis and Doby couples pointed to this hopelessness. “He didn’t want to be a burden,” Alan Doby said, speculating the motives of a father he described as proud. Mary Travis cited a letter from Edward Travis in characterizing his as a “mercy” killing: “‘I believe that everyone concerned will get along with me and Anne out of the picture,’” she read from the letter.

New Grand Round for Patients

It's wonderful to hear the voices of patients telling their own stories and sharing prespectives. Check out Patients for a Moment at Adventures of a Funky Heart.

Advice Columnist Tells Well Partner To Leave

Advice from a Boston Globe columnist, Meredith Goldstein, about the well partner separating from the ill partner. I would be very interesting in hearing your perspective.

And very interested in hearing from those well partners who did choose to leave -- what was the tipping point for your choice and how ha our life been since the separation?

And I would be interested in hearing from those ill partners - what was your life like after the separation?

HERE'S THE ADVICE COLUMN:

Q: I enjoy reading your columns everyday -- it provides such a welcome distraction at work. I find myself in a difficult, sad situation, and would appreciate any advice you and your readers have to offer.

I have been in a relationship for about four years. My boyfriend and I are very young -- we started dating when we were about 20 -- and we’ve had a great relationship and are very much best friends. We agreed early on there was no need to rush and get married, but we frequently discussed our desire to be together for a very long time. Two years ago we moved in together and it was wonderful; we had a great life, great experiences, great friends.

My boyfriend has always had health problems, but a little over a year ago, things really got bad. There’s no need to go into the details, but suffice it to say, it isn’t going to go away, and it has impacted every aspect of our lives. Because it is often difficult for him to move around, we started going out less and less. Our home became less social as he didn’t like having people over as much. His interests narrowed, his mood soured (he’s being treated for depression). Our sex life dried up. I took it upon myself to do whatever I could to make life better for him; I have taken on more and more responsibilities; I physically take care of him; and I have been patient, accommodating and understanding as our lives changed.

Now I’m at a point where I have accepted that this is not temporary, and I feel increasingly hopeless. I have all of the responsibilities in the relationship, with no help from him; I ask for help when I think it is reasonable, but the general rule is, if I don't do it, it won't get done. What's more is that we basically have no lives. His only real interest now is sitting on the couch watching our favorite TV shows, and it’s the only activity we really do together anymore. I’ve told him on more than one occasion that I miss the things we used to do together and with others, and that despite his pain, I hope we can try to have some fun again, even if it’s limited. He tries sometimes, but even if he manages to get out the door with me, we usually can’t stay out for long before he wants to come home. I’ve tried to broaden his interests beyond the TV even within our apartment (books, board games, video games, anything) but that hasn’t really worked either. His interest in other people has also reached new lows, so socializing beyond the infrequent visits of our few remaining close friends is rare. I have started going out on my own from time to time just to escape the negative and monotonous atmosphere of our home (I always make sure to invite him), but it’s not the same, and since our jobs take up much of our time, it doesn’t feel right to spend a large portion of my limited free time elsewhere. I’ve brought up all of these problems separately on numerous occasions, but I have to be delicate about it because he quickly begins to feel massively guilty and depressed, and sees himself as inadequate.

I feel isolated, stuck, and sad, and have been fighting the urge to flee. I think he may suspect my feelings, because he is reminding me more frequently how he loves me and couldn't go on without me. But I just don't know. On the one hand, I have all the responsibilities of the relationship, and none of the emotional or physical joy that should come with it. I don't think he is either willing or capable of living beyond the lifestyle we currently live. I’m 24 and I am terrified at the prospect that this is it, that this is going to be my life. On the other hand, he’s still my best friend, and I love him and deeply care for him. He’s in pain, both physically and emotionally, and he needs me. If I left, it would break his heart, and when I think about the reality of that, it absolutely shakes me.

What should I do? It’s been over a year, and I feel I have tried everything, and things are not getting any better. Am I a horrible person to be thinking about leaving him?

-- Stuck and Hopeless, Boston

A: S&H, You’re allowed to leave. You’re 24. You didn’t sign up for this. I fear the longer you stay, the worse it will be when you bolt.

He’s your friend. You owe it to him to be honest. Tell him you’re not up for this. You can’t commit to this life, at least not as a romantic partner. You can explain that part of your decision is about age and place in life. I truly believe it’s not just his illness. You want to discover more of the world. You want to get to know yourself better. That's what unmarried people do at your age. You will feel like a jerk -- but being a jerk is better than being a martyr.

Give him the whole picture. Explain that you’ve thought about leaving for a number of reasons, but that his health and depression has kept you around. Tell him you've lost track of how serious the relationship would be if his illness wasn't a factor.

If he can’t get his mind around losing you -- if he begs you to stay (and he probably will) -- assure him that you’ll be there as a friend if he wants you around in that capacity. Remind him of all of the other people in his life who care for him. Tell him to seek out as much support as possible. Dealing with a chronic is miserable. He needs to learn to cope without alienating everyone he loves. If you fear that leaving him will send him into a dangerous depression, talk to his friends and family -- even his doctor. It's their job to get him through this.

There’s no way to avoid feeling like a bad person. It's going to be ugly and there's going to be a lot of guilt and shame. But that's life. You can’t always be the good guy. And frankly, I’m not sure that sticking around would make you the good guy. It would just make you miserable.

Go be 24.