To control or not to control? That is a good question. There are three ways to acknowledge, assess, assist the control factor in the different circumstances you face as a caregiver.
Loss of control: In circumstances when a family member’s dementia is advancing, you can get frustrated and impatient with the illness. You are slowly losing your family member to the illness as memory declines or when activities such as playing bridge or dancing together can no longer be enjoyed. A panic may set in while acknowledging reality of the loss and reality of changing roles. Due to the illness, your family member has become a care recipient. A spouse moves from being a partner, or a mother moves from being a parent to gradually becoming a dependent. This adverse awakening can lead you, as the family caregiver, to grasp at straws, thinking that in some way you can control the situation, prevent the change by making your spouse, parent, or sibling better. At some point, best sooner than later, it is helpful if you can assess and acknowledge your loss of control of the situation.
Once you face the advancing illness completely and accept it as best you can, you can then assist yourself into a position of moving forward with less angst and frustration.
Taking control: By accepting the loss of control over the disease, you can then take the control required to provide care, especially for a cognitively challenged family member. This can be a struggle regardless of whether you are or are not living with the chronically ill family member. For instance, a husband has to take control in the kitchen, monitoring his wife who refuses to stop cooking after she caused a fire at the stove. Also, during cognitive decline or in dealing with other mental health issues, judgment often becomes impaired. This may mean that an adult child has to take control of a sick parent to assure that money is being managed properly. It is not easy to take over a parent’s finances. It is not unusual for those with the illness to resist changes that would be beneficial. It is up to the caregivers to see that appropriate changes are made despite the resistance. Changes may involve putting up grab bars in the shower or arranging a day program for stimulation. Asking for guidance and supportive assistance from other family members, the family doctor, or other professionals in facing these struggles can take away feelings of helplessness and will help you strategize around the difficulties. Assistance also comes from taking control in acknowledging that your role as a caregiver is a job and taking frequent breaks from it is a necessity.
Relinquishing control: This is most often required in the advanced stages of chronic illness or when dealing with serious mental conditions and symptoms that are difficult to manage. There may be mobility issues, incontinence, or unpredictable aggressive behavior. Many family members feel a strong sense of obligation and become attached to their caregiving role. Further, they may feel like a failure if they cannot fulfill the role. In cases dealing with the late stage of a progressive illness, many family members want to be there, as they have committed, until the very end. For these caregivers, it often takes a crisis, sometimes their own compromised health, for them to relinquish control. Accepting assistance from professionals and/or other family members helps in preventing burnout that can lead to further dire consequences.
Keeping it together and under control: Communication is important in maintaining the village of caregiving and keeping the situation under control. For instance, you are the primary caregiver for your mother and you say nothing to your siblings about the difficult challenges you are facing. To your siblings, it may appear that everything is running smoothly and under control. In the meantime, you may feel unsupported. The reality is that you cannot assume that your siblings know what is going on unless you, as the primary caregiver share it with them. You can avoid this kind of issue by arranging regular family meetings.
It is also helpful if you, as the primary caregiver, relay specific ways that your siblings can assist such as accompanying mom to doctor appointments or coming over for a few hours once a week to provide a break.
Sometimes, having a professional facilitate the family meeting is more effective to assure positive outcomes, getting the village to operate well. Do you think a family meeting would be helpful for you?
Assessing when the care demands have become too high and taking control by relinquishing control of the overwhelming reality is good for the care recipient to assure best quality care. Keeping it under control plays a big part in any caregiving role. Knowing when to accept the loss of control, when to take control, and when to relinquish some or all of the control can make a big difference in how you cope during the caregiving journey. Practice the method of Acknowledge, Assess, Assist by doing the practice exercise.
The following is a control exercise, 1 of 12 practice exercises in the book Keeping It Together.
K.I.T Practice Exercise # 6
Given the present circumstances, do you feel that you could benefit by:
• Accepting loss of control?
• Taking more control?
• Relinquishing some control?
You may find you need to work on two or all three options. For example, you might benefit from accepting loss of control of the illness and taking more control over the care (when the person with the illness is not able to take control and you have to act in his or her best interest). You might also benefit from relinquishing some responsibilities to other family members or paid caregivers.
From another viewpoint, also consider whether you need to take more control of your personal time.
Describe your situation around control. Take time to write one or two paragraphs in a journal for yourself. This may help with clarity. If you find this exercise challenging, share it or any exercise in this book with a trusted family member, counselor or close friend for assistance in getting objectivity.