When I was a caregiver for my mother, I juggled a full-time job, two children, a relationship, and trying to be the best caregiver I could be. When the time came that I needed help, I would hop on the computer at night and Google information. This was a daunting task. Primarily because not all the information I found was always correct. I was on family forums, thinking this was the best place to find others who were in the same situation as myself, someone trying to manage a family and an aging loved one. I would find a piece of information and try to execute it only to find out the information that I found was incorrect or not very clear.
In my mother’s case, she got very ill at age 60 and was diagnosed with 4th stage lung cancer. We never had preliminary conversations on what her wishes were. So, when the time came, she was too ill to even discuss these very important things with us. When my brother and I tried to have those conversations earlier in her life, her response was always led with humor. “Put me in a pine box and float me down the river.” The crisis hit, and our family was not prepared for the journey we were about to embark upon. Given my mother’s age, this was not even something that we thought about at that time in our lives. When “the crisis” hit, we were at a loss for what resources were available to her. This was in 2007. I worked in the senior industry and reached out to my knowledgeable colleagues for help. I am not sure what I would have done if it wasn’t for my network of people.
Since then, I have worked with numerous families who told me horror stories about Googling information and getting wrong or inappropriate answers for the situation they were dealing with based on the individual they were caring for. Over my 20 year career, there were COUNTLESS stories about how a family caregiver went on the internet to get information about an Assisted Living Facility or a Home Care Agency and were asked to share their personal information in order to get the information they were looking for. They may have received some information, but along with that information came a ton of unsolicited sales calls from communities and agencies from all over. Some not even from their local area. The websites who asked for their personal information were companies who were contracted with multiple facilities who would share their personal information with each facility, who all put them on their call list and would call them on a regular basis. The problem with these sites (usually the first 5-10 sites that come up in a Google search) is that the family who is exhausted and tired from being the sole care providers for their loved ones, did not realize it was not the facilities that they were directly contacting. In some cases, some families just stop looking because they were so overwhelmed by being on these call lists. So now, with no plan, a crisis hits, and their options are now limited to being referred within the same health system with no given choice or to some company with whom they are not quite comfortable because of how fast their loved one’s discharge came up. No time to compare their options for themselves to find the best appropriate options for their loved ones.
Caring Connections of New Jersey and Pennsylvania is a non-profit organization who has a mission to educate seniors and their families locally in their own community. This will be a focused initiative in 2019, so please connect with us so you can be in the loop of our educational events held in your local area. Another mission that we have is to create a safe place for seniors and their families to get information, to not only look at options, but also a place where caregivers and seniors can ask questions to find the right solutions for the person they are caring for or to make an educated plan for their own future based on their own individuality and wishes. We have also created a Facebook Group called New Jersey Resources for Seniors-CCNJ. We encourage families and seniors who are looking to make some decisions, to join our group and visit our website www.caringconnectionsnj.org for a safe place to ask questions without ever having to give your personal information. You should never have to GIVE information to GET information.
Start having these difficult conversations with your loved ones so you are clear on what their wishes are before a crisis hits. I wish I would have had them with my mother so that we had more options when it came time for her to receive the care she needed.