Dear Dr. Neimeyer,
I lost my mother to a terminal disease last year–a horrible disease, and she was in a horrible shape when she passed. The stress of caring for her got to me sometimes, and although I gave her everything she needed, sometimes it was not done with a loving heart. So I have horrible guilt and horrible grief combined. Grief for losing her, grief for the condition she came to be in. She could not do one single thing for herself, not even speak. Throw in regret for not spending enough quality time with her along with the guilt, and I am a wreck still. I cry all the time. I feel like I should be further along in the grief process. I have good days sometimes, and I guess I have adjusted to her being gone; but then I have absolute tailspin days (like today) and just miss her so much and just think I could cry forever. Any help would be appreciated. I know I probably need to take some type of medication but I don’t want to stifle the feelings; I feel I need to let them flow, but I am an absolute wreck.
Thank You,
Karen
Dear Karen,
The disease you refer to is devastating, one that diminishes not only the life of the patient but that of family members as well. In many respects, like other degenerative neurological conditions, it is a “living loss,” one that elicits grief for all the accumulating losses of ability and communication long before death itself occurs. The result has been referred to as “chronic sorrow” for surviving caregivers like yourself, who are powerless to stop the inexorable advance of the disease, despite their best efforts. And of course, just as you describe, sometimes our frustration, helplessness and exhaustion lead us to be less than fully compassionate with our loved ones as months stretch into years, and their condition continues to deteriorate. The result is aptly summed up in your self-assessment: guilt plus grief, essentially two daunting consequences for the price of one.
One way to understand this situation is that much that was no doubt good and loving in a lifetime of relating to your mother has gotten eclipsed by the dominant story of the illness, and its real effects on you both. The result is a tragically selective image of your mother as wasted by the illness, and yourself as exhausted and perhaps at times petty and angry in response to her incessant needs. But this is a dramatically inaccurate depiction of your decades of presumably loving relationship, one marked by pride, appreciation and support that flowed lovingly in both directions across many turning points in your lives together. Thus, one useful practice is to reclaim that history, combing through photo albums of better times, perhaps watching videos of the family in younger years, swapping stories or letters with others who knew and loved her–all means of “thickening the plot” of the fuller story of her life as it was woven together with yours. Pushing back against the dominance of the illness-saturated story can be a conscious strategy, essentially winning back, with the help of others, the makings of positive memories rather than only ones saturated with only guilt and pain.
You also raise the question of medication, which might indeed be appropriate for you given the complicated grief you describe. When effective, the right antidepressant should not so much stifle your feelings as free you a bit to have a broader range of them beyond sadness and anguish alone. However, medication, while sometimes helpful, rarely is a sufficient response to grief. It sounds like you have important “conversations” that need to take place with your mother, in which compassion and forgiveness needs to be extended on both sides. An AfterTalk correspondence, perhaps facilitated with your counselor, might represent a step in this direction.
Dr. Neimeyer
Speaking as a person whose family mostly had very little interest in helping to look after our mother in her later years, I think Karen needs to give herself a pat on the back for all of her own positive inputs into taking care of Mum.
If a person has had to cope with little or no support with something like MND in a loved one, I am sure the stresses would have been huge.
If no one assisted Karen with this enormous task, perhaps blaming herself when she ran short of patience is misdirected.
I believe the society contains lots of people who wouldn’t do very much for anyone even if they were dying in the streets, as they selfishly believe it is the responsibility of “someone else”… … that is, anyone but them. Sometimes these people are seen crying buckets at the person’s funeral when guilt finally catches up.
Karen, I was struck by Dr. Neimeyer’s phrase: “a tragically selective image of your mother as wasted by the illness.” What I have found as an artist who works with the bereaved is that it often helps to have an outsider work with the individual in two important ways. The first step is to collect all good memories (or even “good-enough” memories) that you can remember about the deceased (or your relationship with the deceased). The second step is to take bits and pieces of those felt memories and continue to improve upon them. This can be done in the mind. Though even more “fun” (yes, even in grief and loss) is to play with the photographs to create a preferred memory. The way I would do this with somebody is to cut out copies of people and objects from those personal photographs that could “work” in this emerging preferred memory, and then place them in a fresh setting that changes the story in a positive way. Maybe the artwork becomes a picture of a better yesterday or tomorrow. Or a picture of where they are now. What you essentially create is a deathbed refresh of that tragic image and replace it with something uplifting of your own making.
You might even invite someone from your support network to come over to your place, and make this artwork with you. Have a look at the examples on my website, https://artforyoursake.com/galleries, and let me know if you try it. – Nancy