Charlotte County Florida Weekly

Support is critical for those who care for a loved one with dementia



Advances in health care have allowed that the fastest growing segment of the population is people over the age of 85. Unfortunately, the possibility of being diagnosed with dementia increases with age. As medical technology improves and physical health gets better and better into later years, the life expectancy of a loved one who has dementia will be longer, as will the length of time when care is needed.

Declining cognitive functioning severely limits the ability to interact with the environment on a very basic level. Changes can happen over time or very quickly. It is a heart-wrenching process to watch someone forget how to accomplish day-to-day functions; it is equally difficult for the caregiver to take on more and more responsibility for cooking, cleaning, nursing, and financial matters, as well as to provide constant supervision, entertainment, emotional support, and a social outlet.

The caregiver copes with the changes in the dementia patient as needed, but it is a very stressful time, and sometimes without any understanding of what might lie ahead as the dementia progresses.



Dementia and neurological conditions can be difficult to diagnose and can take a very individual and unpredictable pattern, making it difficult for medical professionals to provide guidance and support regarding emotional problems that have to do with important health-related decisions. Many times, caregivers and the medical team have to assess what is and is not possible for the loved one on a day-to-day basis.

The stress of not knowing what might or might not happen compounds all other stressful aspects of caring for a dementia patient, as it makes planning for the future very difficult.

The caregiver grieves for the person their loved one was and what they will never experience again as a couple. Not having the emotional support from the one person who was always there for them while watching them fade away is a very lonely process. Grief for the person who is gone mentally and emotionally and for the relationship that is no more can involve anger and frustration, as well as guilt over those feelings.

If the relationship between the caregiver and patient with dementia was strained in any way or if the power dynamic was not balanced, that can put more of an emotional burden on the caregiver.

The emotional toll of caregiving can be intolerable, depending on whether mental health issues have been present in either partner, or if psychosis becomes an issue. Any violence, intimidation, or aggression is not acceptable and is an indication that alternative care is necessary.

An important part of assessing whether a caregiving situation is acceptable is if the caregiver is aware of his or her own limitations and can be realistic about stress management and crisis management. The reality is that the caregiver is on duty 24 hours a day and there is no time for other activities.

Prior to caregiving, the family member was able to socialize, relax, and have fun. In contrast, the stress level in caregiving is very high due to increased responsibilities, the probability of falls, emergency room visits, and serious medical events.

Managing caregiver stress involves prioritizing your own needs in order to be able to take care of the other person. Emotional self-care is particularly difficult for caregivers of dementia patients due to overwhelming fear and grief. Dementia patients experience an incredible amount of confusion that is frightening and elicits feelings of despair, which is part of the tragedy of the disorder. The caregiver empathically experiences the suffering of the dementia patient, making the need to take breaks from the situation even more imperative. But guilt often makes taking breaks difficult if not impossible. The financial burden of caregiving is also often left for the caregiver to manage. The caregiver must decide when to get help, what kind of help is affordable, and what is worthwhile to do, all while having increasing feelings of responsibility over an unmanageable situation and multiplying feelings of guilt. If the caregiver asks for help from relatives, he or she must also have to cope with those relatives’ involvement and opinions in caregiving.

Much of this stress can be avoided by having detailed discussions about end-of-life matters while seniors are able to describe what they would like to happen should cognitive impairment become a problem. When the patient’s wishes are known, the caregiver has a better ability to make decisions and will not be so weighed down with guilt over how an impossible situation will be managed. Difficult decisions are part of the aging process, but managing fear earlier can help avoid feelings of despair later. If you or a loved one are facing these questions or are trying to manage what seems like an unmanageable situation, know that mental health professionals who understand what you are going through are available to support you through your caregiving journey. ¦

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