When someone dies our feelings are usually quite clear–sadness, pain, despair, loneliness, and loss. But when a loved one suffers a permanent or debilitating injury or illness, our feelings and responses can be a little more confusing. It can be hard to navigate grief and loss when you are grieving for someone who is still alive.

My father recently suffered an ischemic stroke on the left side of his brain. He spent several days in the hospital, and I was gently informed that he might not make it out.

He couldn’t move the right side of his body. He was unresponsive and unable to speak. Then he began moving his left side, and it was clear that his mind was not aware of the situation or his surroundings, as he began flailing his arms when nurses and caregivers tried to do their jobs. Just as he began to be able to move the right side of his body, he had to be restrained so that he did not inadvertently injure himself or the hospital staff.

Before the stroke, he was healthy and strong. He was mentally sharp and lived a full life, but the stroke took away all of this. Two tiny blood clots came, and everything changed.

Compared to many others who suffer completely debilitating strokes and struggle to recover even the smallest amount of sensation or speech or movement, my father had a fairly miraculous recovery. Though his doctor cautioned us that he might never move his right side again, within about a week he was able to get out of bed, much to the surprise and dismay of the night shift nurse who suddenly saw her stroke patient come walking out of the bathroom after attempting (unsuccessfully) to brush his teeth.

Compared to who he was before, my father is greatly changed. He still can’t use his right hand much at all. It is difficult to eat. He cannot write. He cannot draw a circle, but wants to know when he will be able to drive. He speaks very slowly, for someone who was so sharp and quick-witted before. He often struggles to locate the right words, and even still at times random words jump in front of the one he means to say.

He quickly became frustrated, angry, and depressed at what he felt and saw happening to him. While my brother and I were thankful and elated that he had survived, he himself was struggling to come to terms with all that he had lost. My father doesn’t want to grieve. He wants to be the way he was before.

For me, having already lost my mother three years ago, I was relieved that I did not need to bury another parent. When I got the call about the stroke, it was as if my nervous system seized up, prepared to hear the news that my father had died and that I would soon begin the cycle of grief all over again.

When I felt confident that my dad had made it through those first dangerous and critical days and that he was not going to die, my mind gladly switched gears to being positive, supportive, and looking forward to his recovery.

My father, on the other hand, did not agree. He wasn’t positive. He certainly was not looking forward to his recovery. He was still angry. He was increasingly frustrated.

When therapists praised him for squeezing a ball with his right hand, he sunk lower and began to ask questions such as when will I be normal again? The therapist sidestepped the true answer and asked him, with a short laugh, well, what is normal anyway?

The truth is that sometimes our loved ones suffer an injury so debilitating that they are never the same again. They lose function. Sometimes they cannot dress themselves or they need assistance bathing. An injury might leave them paralyzed in a wheelchair. An illness might take their sight or their strength.

They might ask questions the way my father did. When will I be normal again? Will I ever get better? What is the point of living like this?

Living with and supporting a loved one who has suffered a great physical or mental loss and yet remains alive is terrible and hard, and such a balancing act for the supportive family members and friends who try to help.

We are all grieving the loss of our loved one’s future self, of the person they will never be because of the accident, injury, or illness that happened. We talked before in this earlier post about the three ghosts of grief. We know that a certain version of the future is lost. While our loved one may have survived this time and is alive, the future as we thought it would be has died, and we are grieving that while trying focus on being happy that they are alive.

We can see the lost potential, and our loved one can feel it tangibly and powerfully, when they cannot hold their fork, cannot dress themselves, forget people’s names, or their adult children must assist them in the bathroom.

They feel weakened, humiliated, afraid, and out of control. They don’t want to feel trapped in a hospital bed or in a wheelchair with an alarm on it. They don’t want this change or the long haul of recovery, if one is even possible. They want answers, often when we don’t have one to give.

You might push them to be positive and desperately want them to reach for their recovery with both hands. And your parent might respond with frustration, when they want to wallow and pity themselves instead of working hard to remain alive.

They might think that being alive is not enough. They might tell you this, and it might pierce that tender and aching place inside you that was left empty when your other parent died.

The path forward is rocky and hard. As a bystander, an observer, a helper, and an adult child of a stroke survivor, I am simultaneously filled with joy and hope, and yet swamped with new grief.

I could tell my father was frustrated with all of the half answers he was getting from his care team, when he finally asked me when he would be normal again and what’s the point of living like this.

I didn’t have an answer, but I knew he was waiting for one, and so I said that I didn’t know, but I think the point of living like this is living like this. What else can we do? We are living like this now. Not like that, not in that way, anymore. We are living. And maybe for right now that has to be enough.

“Mom didn’t get to live,” I told him. I wish I had a better answer than what felt like a lost and floundering version of be happy with what you have for him and for others out there who are struggling with this, too.

If you have been down this road, please leave me a comment or a reply below. I would love to hear what is helping and working for you. Until next time, grieving friend, we are living like this. Together.