My husband has a form of dementia. I am his full-time caregiver. I want to be his caregiver. It is not easy for either of us and it has been and will be a long journey.
Recently I chose to join a few chat rooms at different sites. One is specific to his type of dementia. One is specifically for caregivers and one is the Mayo Clinic chat for caregivers and/or carees.
There are so many people facing incredible challenges as they care for family members. There are people caring for more than one family member in the same household. There are elderly people caring for their elderly spouse and adult children caring for elderly parents. There are carees who are easy to care for and there are those who are unbelievably difficult and dangerous to themselves and others.
Many caretaker chats are great places to get and share ideas of the practical nature. The help is invaluable.
There are also chats that become a safe place for people to vent, break down, ask questions on how to survive the tough job ahead and just generally come apart.
One of the sites has a trained caregiver consultant in each chat. Tonight I learned from her an unbelievably freeing approach to how I feel about myself and about why I am caregiving and why I need to take care of myself. Not all caregivers see things from the same perspective. All caregivers present with the same frustrations, sorrows, exhaustion, and, concerns.
Some believe in the use of medication to help control emotional symptoms. Others believe it is a cop out and argue for the whole health approach. Others wrestle with when it is important to make the right decision about long term care in a facility for their loved one. Still others just want to know when it can happen and yesterday is too late. No matter what I question about myself and our own situation there are a variety of options supported and championed by other caregivers. I find this diversity to be a safe place. I am not rejected for wondering when it will all be over and I can have a life again. I am not rejected if I want to place my loved one in a facility now or if I plan to wait. People ask questions and help each other to think through their own situations.
I know cyberspace can be a tool for much harm and evil but it can also be a tool for community and communal sharing with people thousands of miles away that I will never meet but share the same challenges and heartbreaks and successes and victories.
I probably have at least 20 friends across this country that I have never met in person and probably never will meet in person and yet they know me inside and out and I know them. I met some of them when I was working from home and I have met others through the caregiver chat rooms. This is the new world we live in today. Connecting with others is becoming more fluid and diverse.
I know the question could be asked about how I know these people are being real. I can't prove it in a court of law but I also cannot imagine why anyone would come into a care giving chat room and fake a painful story of caring for their mom who is ungrateful and difficult and ask how she can learn to manage that situation with her in a more positive way. Besides, if she was blowing smoke, the response she got from the trained counselor helped me immensely.
Like I said...diversity in perspective. Take what I need and leave the rest. My field of the experiences and insights of others has grown exponentially. I am grateful.
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