As we said last month,family members of someone with a dementia often come see us for a consultation because they want to know what is “coming down the road.” They want to know what to expect as the dementia progresses and how to prepare for the future. We wrote that it may be helpful to think of changes as occurring in three areas: in the person with dementia, in the relationship between caregiver and the person with dementia, and in the caregiver. This month, we focus on the changes in relationships.
As dementia progresses there is a shifting in the primary way people relate to their loved one. For example, as they become more and more a caregiver, a husband or wife may feel that they are becoming less and less a spouse. This change may be described as role shift. As the dementia progresses even further, there might be a feeling of total role shift which can be spoken of as role loss.
Roles such as husband to wife or mother to child are made up of reciprocal actions.In other words, relationships can be thought of as the way people behave with each other and the things they do with and for each other. There is a tacit agreement to those parameters. We understand that relationships are reciprocal: what we receive from each other is as important as what we give. Yet, as someone with dementia gradually loses capacity to interact, they are less and less able to give in the way they used to, both emotionally and in the practical terms. Even though it is not their fault, it is like they are changing the agreement.
As someone becomes a caregiver to someone with dementia, it is natural for them to feel grief not only for the deterioration and loss of their loved one, but also for the loss of the relationship that they used to have with that person. For a spouse it is the loss of a companion and a helper. It is the loss of having someone hold them and be intimate with.It is also the loss of someone with whom they have built up years–often decades–of shared and intimate memories.For adult children it is not just the loss of a parent. It is the loss of “Dad” or “Mom” and all that those words mean.
As role shift occurs caregivers take on tasks which were often the “domain” of the person they were caring for. Between couples it might be when a husband takes on the primary responsibility for preparing meals or sewing on buttons. For a wife, it might be taking on the handling of family finances, writing the cheques, or becoming responsible for home maintenance. Yes, these are stereotypes, but they are often true. While the changes mean people learn new skills, they also feel uncomfortable, and can be a painful reminder of what has been lost to them.
For caregivers who are adult children, role shift is the experience they have when they use the term”parenting their parent.” Several Elder Voice articles have mentioned that we find this expression troublesome (although understandable). The term is a very good one to describe the role shift, and grief and loss adult children feel as the relationship changes. However a more effective way to think about this is to think of themselves as caring for someone with a disability. This mind set can help to remind them that the role may have shifted, but their parent is still with them.It also can help guide them to interact more positively with their parent, despite the latter’s disability.
In families, there are limits and unspoken rules about how people talk with and behave towards each other. Changes in relationships mean there must in turn be changes in “the rules” of the relationship. As their caregiving role progresses, adult children have to learn to give themselves permission to relate differently to their parent and behave in different ways. For example they might be called on to carry out intimate and perhaps embarrassing tasks for their parent.Or they may have to set limits or make decisions such as telling their parent there must be a caregiver in the home. The uncomfortable feeling that this brings up is the experience of breaking those unspoken rules which have guided their family and relationship. Moreover, making those decisions is a powerful reminder that the mother or father and the relationship that they used to have is changing or gone. This is why it is helpful to remember they are caring for someone with a disability. They are now making decisions for someone who is no longer able to accurately assess and plan for what they need or make decisions about their safety, health or future.
Although we have mostly focused on caregivers in this article, it is important to remember that people with dementia also experience role shift and role loss as relationships change.For them, the shifts are not only with family but also with friends who begin to act differently towards them. It can be hard to have someone tell them what to do.It is embarrassing for them to lose control over their lives little by little and to know that they cannot “keep up” with their friends.At some point they do not know why people are treating them as they are because they do not have the insight to know the extent of their impairment; they just know how people are treating them. When caregivers encounter anger and resistance from the person with dementia it may be the latter’s way of trying to hold onto themselves and their dignity.
The changes in relationships that people experience often occur slowly and may at first be subtle. Caregivers and persons with dementia may not realize what is happening between them. If you are in this situation,it can be helpful to step back and write about it–what has happened, what does it feel like, what is it you are losing or what is changing. Talking about what you are experiencing can help you understand it better and make you feel more in control of how you handle it.
Diamond Geriatrics offers professional counselling to help caregivers and those with dementia cope with the journey of dementia.
The Richness of Caregiving
As role shift progresses or role loss occurs during caregiving feelings of sadness, anger, abandonment, resentment, or frustration are common reactions.It is important to remember that there can be another side of caregiving.
One of our clients once told us about the experience he had as a caregiver. His father lived with him for three years before dying at age 93. Our client told us, ” It was difficult, but I would not have changed it for the world. I got closer to my father than I had ever been.”
What this man was telling us, and what we have heard so often, is that caregivers often receive a very unexpected gift. They develop a sense of closeness and intimacy and tenderness for the person they are caring for which is beyond what they ever had. They have learned new skills and found strength in themselves that they never knew they had. Many times, they come to a sense of forgiveness, and of being forgiven, which gives them a peace and fulfillment they will carry with them for the rest of their lives.