Dementia not only effects the person diagnosed, but it also effects the family members and loved ones surrounding the affected. A few of the most common feelings those surrounding the affected experience are guilt, grief and loss, and anger. Whatever it be that you might be feeling, know that these emotions are valid feelings. Dementia can be a tough syndrome to handle, it can be vastly time-consuming caring for a family member who is affected. Being the full-time caregiver can also change your personal life.
The Emotional Aspects
Guilt: Guilt is a very common feeling once a loved one is diagnosed with dementia. You may be feeling guilty for feeling embarrassed about their strange behavior, lack of patience, or having feelings of burden from providing care.
Grief and Loss: When we are faced with a dementia diagnosis, we are also faced with loss. It becomes evident that the relationship we once had with this person will change and we will be faced with loss of the future and time together. These feelings are different for every person and sometimes will not be easier with time.
Anger: It is quite common to feel angry, frustrated, tired, or even annoyed. There are various reasons for these feelings such as having the responsibility of being the primary caregiver, siblings or other loved ones who are not helping out as much as you, even being angry at the affected for having difficult behavior. However, these feelings should never be acted upon in negative ways toward the affected.
Changes in Relationships
Being the primary caregiver for a loved one with dementia, not only changes your relationship with that person but it can also change your relationship with others. According to dementia researchers, Henry Brodaty and Marika Donkin, “caregivers often lack social contact and support and experience feelings of social isolation: caregivers tend to sacrifice their leisure pursuits and hobbies, to restrict time with friends and family, and to give up or reduce employment.” Being a primary caregiver can really take a further toll on personal life. Providing care requires around the clock responsibility almost more so than having a full-time job. This can be mentally and physically draining.
Asking for Help
According to Henry Brodaty and Marika Donkin, “people with dementia generally require high levels of care, most of which is provided by informal or family caregivers”. If you are the full-time informal or family caregiver know that it is not an easy job and that trained professionals can provide the same type of outstanding care. Asking for help from other family members or getting support from them can help ease some the emotions you may be feeling. Recognize that the care that you have provided so far has been successful, and it is not only up to you to be the primary caregiver.
For further information read up on this case study done in the UK on family members providing care for their loved ones here.
Brodaty, Henry, and Marika Donkin. “Family Caregivers of People with Dementia.” Dialogues in Clinical Neuroscience. Les Laboratoires Servier, June 2009. Web. 26 July 2017. <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/>.
“Impact on Family and Friends.” Alzheimer.ca. Alzheimer Society of Canada, 10 Apr. 2014. Web. 26 July 2017. <http://www.alzheimer.ca/en/Living-with-dementia/Staying-connected/How-relationships-change/Impact-of-the-disease/Family-and-friends>.