You can sit beside someone, hold their hand, hear their voice and still find yourself missing the person they used to be.
By Lillian Okenwa
The first time she called her daughter by the wrong name, everyone laughed it off. Perhaps she was tired. Perhaps she had simply forgotten. There had been little things before then: misplaced keys, forgotten appointments, questions asked more than once. Nothing anyone wanted to make too much of.
But gradually, the woman who had remembered everyone’s birthday, kept the family together and knew exactly how each child liked their food began to struggle with the smallest details of everyday life.
Some days she recognised her children. On others, she looked at them with the uncertainty of someone meeting strangers. Conversations that once flowed effortlessly became difficult. Familiar stories disappeared from her memory, and sometimes even the people who had shared those memories with her seemed unfamiliar.
Her daughter still visited. She still brought food, adjusted her mother’s pillows, helped her dress and sat beside her. But there were days when she returned home and cried, unable to explain exactly what she was grieving.
Her mother was still there. Yet she missed her.
This is one of the cruellest experiences of loving someone whose mind or personality is being changed by illness. The person has not died, but parts of the relationship that once made life familiar may no longer be accessible. There is no funeral, no final goodbye, no socially recognised moment when everyone understands that something precious has been lost.
Instead, there are gradual changes. A familiar voice that no longer carries the same recognition. A question that must be answered repeatedly. A shared joke that no longer makes sense. A parent who once offered comfort now needing help to get through the day.
And because the person is still alive, those who grieve may feel they have no right to mourn. They may even feel guilty for missing someone who is sitting right in front of them.
But grief does not always begin with death. Sometimes it begins with the loss of the relationship as it once existed. It can come when a husband can no longer have the conversations he shared with his wife, when a child watches a parent forget important parts of their history, or when siblings find themselves making decisions for someone who once guided the entire family.
The experience can be confusing. There may be love, tenderness, frustration, exhaustion and sadness, sometimes within the same afternoon. A moment of recognition can bring enormous joy, only for another moment of confusion to follow. Families learn to celebrate small victories while privately preparing themselves for further changes.
Those providing care may carry an additional burden. They are expected to be patient, understanding and strong, often while managing work, children, financial responsibilities and their own emotional lives. They may feel ashamed when they become impatient or desperately wish for a break. They may love the person deeply and still struggle with the demands of caring for them.
These feelings do not make them unloving.
Caregiving can be an expression of extraordinary devotion, but it can also be exhausting. The person providing care may need support just as much as the person receiving it. Yet families sometimes overlook this, concentrating so completely on the illness that the emotional wellbeing of the caregiver becomes an afterthought.
There is also a loneliness that can accompany this kind of grief. Friends may not know what to say. Some may assume that because the person is alive, there is nothing to mourn. Others may stop visiting because conversations have become difficult or because they do not know how to relate to someone whose behaviour has changed.
The family is left managing an experience that is difficult to explain. They may be surrounded by people and still feel alone with what is happening.
For some, the pain is complicated by the memories of who the person used to be. A mother who was once decisive may now need help choosing what to wear. A father who commanded respect may struggle to recognise his own home. A partner who was once a source of reassurance may become dependent on the person who once leaned on them.
There can be a temptation to measure every day against the person they remember. But doing so can make the present feel like a continuous reminder of what has been lost.
Perhaps one of the hardest lessons is learning to meet the person where they are now, without pretending that the changes do not hurt. A familiar song may still bring a smile. A hand held gently may offer comfort even when words fail. A visit may matter even when it is not remembered the following day.
These moments do not erase the grief. They simply remind us that connection can sometimes survive in forms we did not expect.
Families facing dementia and other life-altering conditions need more than instructions about medication and physical care. They need emotional support, respite, practical assistance and people who understand that the illness affects everyone who loves the person. Caregivers should be able to speak honestly about their exhaustion without being made to feel guilty. They should not have to wait until they are overwhelmed before anyone recognises that they need help.
And those who are grieving should not be told to stop being sad because their loved one is still alive.
There is no betrayal in missing the conversations you once shared, the affection you once received or the person who knew your story without needing to be reminded. You can treasure the person who is here today and still ache for the person you remember.
Love does not always get the ending we imagined. Sometimes it asks us to remain present through changes we cannot reverse, to find new ways of showing affection and to accept help when the weight becomes too much.
For the daughter in our opening story, her mother was still there. She could still visit, touch her face and sit beside her. But she was also learning to live with a loss that had no clear ending.
Perhaps we need to make more room for people carrying this kind of grief. They are not mourning too soon. They are not being ungrateful for the time they still have. They are trying to love someone through a change neither of them chose. And sometimes, the hardest goodbye is the one life never quite allows us to say.
● A lawyer and equity advocate, Lillian is the publisher of Law & Society Magazine. She can be reached at Lillianokenwa@gmail.com X: @OkenwaLillian.