He makes it look easy…
A slow procession of a death march, with no end in sight. If death comes for us all, why are so many left shocked by its suddenness? The grief of not having enough time to do the things that were desired, or the time to finish all those projects, where in the end, it mattered very little. He seems to be at peace with his past, the experiences he did have and the little time he has left. He has embraced the idea that his time is limited and views each day as an added bonus, when so many have passed through our lives and left, their time at the end was filled with immense sadness and despair.
The losses continue to pile up, and yet he moves through his day with a quiet acceptance of his situation. He never complains, even if it would be an appropriate response to rage, or cry or wail at the slow and steady losses he has experienced all these years. He seems to accept the unfairness of it all because who ever said life was fair?
He is patient with those around him. We see to his every need, and as those needs accumulate, he waits calmly, trying to explain in detail the exact spot he needs adjusted, or scratched, or seen to. The food that is carefully brought to his mouth, the bites smaller and the drinks taken more carefully from the hands that feed him. The many times one of us were too slow and he is left mortified at his inability to control his bodily functions, as he apologizes for the mess. Trying to assure him that it isn’t a problem, and quite honestly, it isn’t. Trying to find humor in a difficult situation is one we have all learned to master throughout the years.
He intentionally does everything within his power to make our life easier. Shouldn’t it be the other way around? When my patience has run out at the constant barrage of needs, he accepts that this is where we are and lets me find space to refill and recharge. When his patience has run out, he asks to lay back and meditate, pushing the negative away from him, and asks for the positive to fill his soul. I am jealous of his strength. And his ability to be still in a world filled with unease.
The immense guilt I feel at not being able to be more, do more, is often overpowering, and he will remind me that no one should have to be a caregiver 24/7. No one should be expected to carry it all alone, and yet I feel like a failure because he carries so much, and I feel as if I am not keeping up my end of the bargain. How can he be so accepting, and I am the one who feels such anger and sadness? I never said I would become his caregiver, nor did he expect me to assume the role, but it is where I found myself.
I did make a promise to be by his side throughout this journey. In the beginning, I felt only I could care for him the way he needs. I learned a few years ago, no one should carry this alone, and this would become a marathon, not a sprint. I still struggle with asking for help, or creating boundaries for myself to stay the resilient one. I have learned there are times to step away and let others fill the role of caregiver and take time to fill my soul so that when I return, I can continue to love him and care for him the way he needs. I am learning to say “no” more often so that the bitterness and frustration are avoided later.
I have spoken and listened to other families experiencing our same struggles. The sadness and the anger that is expressed by their loved one who is dying is just as deep as the person caring for them. Quite often that anger is directed at the closest people around them, which would seem by many outsiders to be a justifiable response during times like these, and yet he seems to have found a peace and acceptance from early on with this damn disease.
I am horrified and appalled at the behaviors of both caregivers and the persons dying, and yet I am also often not surprised. They are each carrying such a heavy load and feeling as if they are each marooned on separate islands. The loneliness and solitude felt by both are only experienced greater when they don’t communicate or don’t know where to lay those emotions down. Each side feels grief, and guilt and a desperate urge for it all to be over…yet knowing when its over, the finality of it all feels daunting and unknown for both and fear is an unwanted addition.
I have felt the waves of intense grief, anger and despair. Days where it engulfs me, and other days where these emotions pool around my feet. I lean on him, needing his strength and his calm. It feels so unfair that I am not the strong one.
He makes it look easy…
#uncrushablespirit
ALS Fact of the Day~ 