Caregiver, have you been left out of the conversation?
When I met Mariane*, she hoped that healthcare would take charge of the dementia care for her husband, Tod*, and that they would help her to find safety. Disappointingly, Mariane has not received help, and she feels alone and desperate. True enough, Tod is the one with the medical diagnosis, but Mariane shares this journey, too; because Mariane is not the patient, from doctors she has felt little respect for her input, and little concern for her well-being.
Mariane’s situation is stressful for a couple of reasons. First, Tod believes that the dementia diagnosis is a mistake, and he does not trust the doctors. Tod also does not trust Mariane now, because she believes the diagnosis. The second stress factor is that Mariane worries Tod will hurt her. Not only does he disagree with Mariane over his diagnosis, but he has also made off-hand observations like “If I decided to, I could kill you one night.” Mariane fears that he just might try to kill her sometime, both because Tod does not trust Mariane, and because he has been growing more and more unpredictable.
Mariane is like other spouses of individuals affected by dementia, because she lives with the pain of watching her husband turn into someone unrecognizable. Unlike many of those spouses, she lives with the frustration that nobody is monitoring Tod’s condition or care needs: Tod does not follow-up on a diagnosis he doesn’t believe; and though doctors send appointment reminders they do not always follow-up when Tod doesn’t act; and Mariane cannot actively manage his care for fear of angering Tod.
Mariane has tried to influence Tod’s care by connecting with his specialists, hoping this will convince them to act. She has sent reports of Tod’s behaviours, but she has been turned away, with one doctor specifically telling Mariane to not contact him. When Mariane told their family doctor about her concerns and fears over Tod, the doctor was dismissive: the doctor thought Tod was clear-thinking during a recent consultation; and if Mariane was afraid, the doctor said she should lock her bedroom door at night, and make sure she had a good escape plan.
In early days after Tod’s diagnosis, the family doctor also said that action could be taken if Tod ever became violent, but Mariane learned this promise has limited truth when Tod recently hurt her. In the excitement of leaving for an outing with his daughter, Tod unexpectedly turned to face Marian and boxed her ears so hard that she suffers from a concussion and permanent hearing loss. When Mariane reported this event to her family doctor and asked for action, the doctor told her that he could send Tod for a competence assessment, but he warned that Tod might not be held long-term, which would mean Tod would eventually go home; if the assessment showed that Tod is unable to make good decisions, Tod would lose his job, and would be spending his days at home with Mariane – a nightmare for a woman who is afraid of her husband.
Why couldn’t Mariane be part of her husband’s medical conversations? I believe that feedback from a caregiver can improve their loved-one’s well-being, since caregivers can offer valuable day-to-day observations and information that their loved-one may ignore or may not recognize. By contrast, I have heard from spouses as well as a caregiver advisor that sometimes doctors ask spouses/ caregivers to stay out of the appointment room, and doctors lose that added perspective.
For caregivers to be part of their loved-one’s healthcare conversations, Alberta patients can complete the Consent to Disclose Health Information form. Unfortunately for Mariane, Tod wouldn’t have signed this form because he did not trust her.
Why wasn’t Mariane’s well-being monitored by Tod’s doctors? I believe that doctors could promote health by checking on the well-being of caregivers, in addition to their patients, since the caregivers’ lives and health are also affected by a loved-one’s diagnosis. If doctors had the goal of caring for the caregiver, I wonder if Mariane would have received the support she needed when she said that she felt unsafe. We could argue that it is the police’s job to protect someone who feels threatened, like Mariane did. Since Tod’s actions are affected by his health, I argue that healthcare providers are better suited to step in to check Tod’s mental health, and recommend appropriate interventions. I understand this situation is not easy, and there needs to be careful balance of the rights and responsibilities between patients, caregivers and doctors. If we don’t explore possible solutions we will continue to leave caregivers vulnerable, possibly as victims of a situation beyond their control.
In this situation, Mariane’s win is that she finally got a clear answer about what action a doctor could take. In the end, both she and Tod will suffer losses, because she doesn’t want to risk what might happen if the doctor does act. Regretfully, Mariane feels her only option to protect herself is to end her marriage with Tod. Tod will likely suffer for losing Mariane’s stabilizing and caring role in his day-to-day life; and who will monitor him and inform the doctor about his everyday behaviours so that they can prescribe appropriate and timely care?
It’s time to bring situations like this into the open, to explore possible solutions, even if the conversation is not straight forward. If you need to have a conversation like this with your doctor or other healthcare providers, and if it feels too big, I offer to support you. Please call – I would be honoured to hear your story, to give it a voice, and to support a path to change.
You Don’t Have to Journey Alone!
*names are changed for privacy