The diagnosis of dementia can often come as a shock and may lead the family dynamic to change as a result of the new and ever-changing needs of your loved one. The realization that your loved one can no longer perform regular every-day tasks independently and the need to make timely decisions about who will handle the new responsibilities that come with this change can cause a lot of stress. Will a son or daughter be the new family caregiver? Will the tasks be divided amongst two siblings? Maybe you don’t have a sibling and have to take on caregiving all by yourself. This is where many questions and, potentially, differences in opinion may arise. What happens when siblings disagree about how the situation should be handled?
Keep reading to understand the struggles that families face when they learn of their loved one’s diagnosis and how family dynamics can change as a result.
Finances and Different Options
The family’s financial situation, family members’ careers, and desire of how to approach caregiving can have a large impact on the decision of how to handle their loved one’s diagnosis. Some family members may believe their loved one will fare better in a long-term care home; some may believe that it is wrong to place their loved one in the care of strangers. Of course, many individuals do not even have the choice to have their loved one live in a care home if their financial situation does not allow for it. On the other hand, some individuals may have no choice, but to hire a live-in caregiver or have their loved one live in a care facility. For example, if a person must continue working to provide for their children or if they live far away from their loved one and are unable to relocate, options may be limited. This is all dependent on the stage of dementia and how much care the individual requires, but as can be seen, it is a very complex issue that can raise a lot of concerns.
Division of Tasks
If siblings decide to take on the role of caregiver themselves, there may be disagreements about who will take on what responsibilities. One sibling may take advantage of the other sibling who has more free time and then this sibling may end up taking on more tasks, which may lead to caregiver burnout. This is likely to cause resentment. If both siblings have jobs they cannot leave, they may need to divide the responsibilities so that the arrangement is reasonable and fair.
Many times, the primary caregiver takes on the role of caregiving because they don’t have any other choice. Maybe no one else in the family is able to help or maybe they do not even want to. Unfortunately, other family members may not realize how difficult life as a caregiver can be and may not offer to help. Helping the primary caregiver with even one task can make a big difference and may alleviate some of the burden they face.
Dealing with Change in Family Dynamics
Changes in roles and family dynamics call for a change in communication. Your loved one is adjusting to loss of independence and their new need for assistance, while you, as the caregiver, are adjusting to new responsibilities. Caregiving can be isolating and may cause the person to communicate less and neglect hygiene. It is very helpful if other family members offer some emotional support to the caregiver, at the very least, so that they do not feel so alone.
Self-care is extremely important during this time and should not be neglected. For the caregiver to be able to provide the best care possible, they need to feel their best. This is a great way to avoid caregiver burnout and mental health problems that can occur as a result. Self-care comes in many shapes and forms and is different for everyone. Some people exercise daily, while others meditate. Finding what works for you and establishing a routine is key. Additionally, it is important to pay attention to changes in mood or mental health and note when it may be time to reach out to a family member or even a professional.
Furthermore, educating oneself about the progression of dementia and the disease allows the caregiver to better prepare themself and know what is to come. Speaking to a healthcare professional and using online resources is a good way to learn more about dementia.
When a caregiver reduces their work hours or must leave their job entirely, they may feel a loss of identity. A person who once strongly identified with their career, might struggle with their identity in their new life as a caregiver. Do you now call yourself a caregiver or do you find something else to satisfy the vocational role in your life? Either may be the case.
Additionally, a caregiver may find themselves more inclined to lean on their family members for support because, after all, they are going through similar feelings of grief. It is common for caregivers to lose friends as a result of having less spare time and feeling like they are unable to talk about their newfound caregiving tasks with friends who might not be able to relate. Caregivers may need to look to new venues to find support such as caregiver support groups in person and online.
It is normal for family dynamics to change when a loved one is diagnosed with dementia and it can also be very difficult to accept these changes. Having an open conversation amongst family members and trying to come up with a fair solution that makes everyone happy is most important. It may be hard, but sometimes it must be done. Most families go through at least a few difficult times in their lives. As long as we are there for each other and try to be as understanding as possible, together, we can get through anything!
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Blackburn, A. (2020, January 7). Becoming a Caregiver at Home: Altered Family Dynamics & Self-Care [Web log post]. Retrieved June 11, 2021, from https://medium.com/selfcaregiver/becoming-a-caregiver-at-home-altered-family-dynamics-self-care-f808842ccc7e
Wilson, P. D. (n.d.). Family Dynamics of Caregiving [Web log post]. Retrieved June 11, 2021, from https://pameladwilson.com/family-dynamics-of-caregiving/