I attended a webinar today called, “Grief: What Helps When It Hurts” by the Hospice Foundation of America. I was interested in this presentation because I work with a lot of employees who have lost family members and struggle when they return to work. The focus of the presentation was about grieving the death of a loved one but many of the principles presented also apply to the grief we experience as caregivers.
The effects of grief are vast. Grief can have a physical, emotional, cognitive, behavioral or spiritual impact. How someone reacts to grief is very individualized and impacted often by their own health, their relationship with the person who experienced the loss, and what they believe is the acceptable way to cope with the loss. It’s a roller coaster ride that lasts a long time and may come back to hit us in the gut when least expected. Let me share with you how grief has affected me.
First, let me say that Lynn is very alive and aware. What I am grieving is not his death or even an anticipation of his immediate death. What I am grieving is the loss of how he used to be. I grieve such things as the loss of all the things he did for me, the fact that we could go out and share in activities together, his ability to be independent, and my freedom to have time to myself. I miss his singing, the drama programs we used to do together, the ability to go visit family and friends or even go to a movie. I grieve the fact that he will never be “able-bodied” again; never able to do what he wants to do when he wants to do it. I grieve the loss of the dreams we had for a new home, travel, and financial security by the time we reached retirement.
The physical side of my grief shows up as constant fatigue, headaches, body aches (though that could be the constant lifting I do for him, too) and irritable bowel syndrome. I also am overweight due to eating to keep my energy level up and to stay awake because I typically don’t have the option to get more than 5-6 hours of sleep a night. I occasionally have heart palpitations and swollen ankles. It’s difficult to tell if these issues are related to grief or lack of sleep or excessive physical demands but I suspect they are all intermingled.
Emotionally I have periods of sadness, anger, anxiety, and fear—sometimes separately, sometimes all at once. I can be feeling sadness immediately after a good experience or anger about being afraid. Emotions run from subtle to extreme all in the same hour though most of the time, I just feel numb. I’ve learned to compartmentalize my emotions; to separate them from what is currently happening so I can maintain control.
Cognitively-I can become forgetful. Lynn tells me things and if it’s not “essential” information, I can’t remember any aspect of the conversation. It’s like I’ve had a black out. Last week I was assembling his medication for the week and I lost one of his bottles of pills. I knew I had it just moments before but I searched everywhere I could think of to find it…unsuccessfully. The next day I was sitting at the kitchen table and saw the bottle sitting on the “ice dispenser ledge” on my refrigerator door. That ice dispenser doesn’t even work! I have no memory of putting it there or seeing it when I was looking for it--total loss of recall.
My behavior seems to be directly related to my emotions but during stages of grief I may isolate myself more, be more pessimistic and choose not to “keep up” with things like I should. I tend to protect myself from the disappointment by not engaging in the first place and avoiding commitments because I don’t expect to be able to fulfil them.
Finally, spiritually, it has strengthened my faith. Certainly there have been times of anger and questioning but for the most part, I’ve learned that I have no control of the future but God does. Where I can’t rely on Lynn to help out, I can rely on God to provide me with what I need when I need it (though I admit I wouldn’t mind him being a little faster sometimes on the “fix it” requests).
I don’t grieve as much now as I did when Lynn first became disabled. Now it gets triggered unexpectedly by songs, sounds, places, or people. It hits more when I’m tired or stressed. The most important thing is that I know what it is and I know to let it happen and that I can’t skip over it; I have to go through it to get to the other side.
Do you celebrate your MS Anniversary?