Q: Dear Nurse Posvar, I have been caring for my daddy for several years. I am the only one who helps him change clothes, bathe him and prepare his meals. My siblings are all too busy to help and I am not working so it is my privilege to care for him. I am not complaining at all but sometimes I have such a difficult time as just when I think I can rest, something happens. My daddy wanders at night so I don’t sleep well as he might get up. He is often confused and I don’t know half the time what he needs. We figure it out and then he goes back to bed. I have read and heard that we all need a break. How can someone in my situation get a break when there is no one around? Is it possible?
A: Wow!! I hear this a lot out here. I am so surprised at the challenges one endures in Saint Lucia with regard to caring for an older adult who may or may not have dementia. Families who have no support are left unseen and forgotten by family and society.
Every primary caregiver will need a break whether they themselves recognize it or not. Many studies have shown that regular respite care will improve quality of care from the caregiver and their own health. Families who can help each other with providing some respite relief for the primary carer will see more harmony in the family dynamics. It is simply not acceptable for family members to put the entire caring burden on one individual by guilting them with, “It is your mom or dad, you are the closest or the last one in the house.”
Family members who do this have no concept of the responsibility of care that is needed nor the impact it has on the person doing the care or the burden of managing all of the care.
Although, I do hear families say, “it is not a burden it is my honour or privilege, this is just the way it is,” and indeed it is noble to take on caregiving, and having a positive attitude is a key-factor with coping skills. It does not escape the fact that you alone cannot complete such a task without the consequences of your own health and withdrawal from social activities.
Humans are social beings. We need social interaction in our lives. For family members to watch a family caregiver care for a loved one with dementia or any condition that requires 24/7 care and see how that carer has dedicated their life to all of their loved ones, become isolated from society because there is no one to give them even one hour break, is a person who has no clue and does not hold the person who needs the care in any value to themselves let alone the family caregiver. If they did they would not leave the care so blindly to one person.
There are many family caregivers who work outside the home and have children and families of their own to manage and care for and are left to care and manage care for their adult older person because still, some families leave it all to one family member. As we become more aware of the increase of caregivers in this country and world, families will become more knowledgeable to participate in the care of their loved ones even if they are not the primary caregiver.
To be clear from statements above I am talking about families who can help and just don’t for inexcusable reasons and not the ones that have special circumstances. But even those with special excuses can offer some support to assist that primary caregiver. People need to understand that caring for another adult with dementia is not the same as caring for a child although there are similarities. There are more similarities between disabilities with children and adults than children in general and often families will compare caring for people with dementia to caring for children as being equal and this by far is the worst comparison if one had to do so.
Now it is a fact that families are alone in caring for an older adult with dementia or with family support they still do not have adequate support. What can a family do about this? Other than hiring help for those who can afford, St. Lucia does not offer much at this time. Angels of the West Indies is asking for family and the community to write in or email your ideas for a solution. Teaming up with other organizations would be a good start. Respite Care is needed.
Angels of the West Indies P.O. Box BW Gros Islet LC01 601 Saint Lucia
Send questions to [email protected] / 758-486-4509