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.

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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.