Often there is no choice about caregiving.
Someone is diagnosed with a serious disease with treatment and recovery in the unknown future. Someone else is diagnosed with a progressive disease that can only get worse. And all sorts of scenarios in between — all of which require help. Most often, care falls to the person who lives with them – a spouse, a child, a grandchild. A family may provide space for their loved one to move into their home or choose to move in with their relative. Others try to continue a career and care for their loved one.
There are 53 million American adults who care for a spouse, elderly parent or relative, or special-needs child in their home. Caregiving will be different for everyone based on their own particular circumstances. A caregiver is responsible for another person’s well being and that is the thing we all have in common.
We are not here to judge anyone’s journey. But we do want to make every caregiver’s journey easier. . . .
No one ever expects to be a caregiver. The diagnosis that made us a caregiver was a disease that only 30,000 Americans share. That was difficult. But, for us, caregiving was a total unknown. We would look at one another and say, “how do we. . .? and feel so overwhelmed and uninformed. And what we heard from others, indicated we were not alone in that reaction to a loved one’s incapacity. We vowed we would share what we learned so others could provide the best care possible, without sacrificing their own well-being and sense of self.
We want to offer resources and information so, no matter your situation, you have concrete information upon which to base decisions. You will find tons of resources that offer financial information, options and sources of help. We hope you will also share resources you discover. Planning ahead makes a huge improvement in your ability to provide care and not stress yourself beyond belief. We want to provide you a way to plan ahead with information and tools at your fingertip so you can avoid that stress by being informed and ready for situations and decisions that come your way.
Caregiving isolates the caregiver, in part because of the time needed to do what is necessary. In home caregiving, often the person is too ill to have others around, or a brain disease (dementia, FTD, etc) has made them too unpredictable. Friends and family drift away. Many people are uncomfortable around illness so stay away. Some were never there in the first place. We want to establish an online village where you can ask questions, offer insights and share experiences with others who understand. We also want to offer education and tools to reduce the demands that isolation and physical stress bring into our lives.
We want to share our hands-on care giving experiences so you can learn what to avoid, what to do differently. We have stories . . . oh, do we have stories . . . so you can learn from our mistakes. And to pick up our insights. The more you understand, the better environment you can create for both you and the one for whom you care. And the more time you will have to keep your own sense of self.