A couple years ago when I talked with community organizations who supposedly deal with patients living with dementia, I explained that Dad didn’t understand the need for someone to stay with him during the day while the rest of us could go to work and school (I was in a full-time masters program at the time). I also explained that he physically walks out of day programs and that one of us had to skip work/school to stay at home with him. I said that we were desperate for a solution so that we wouldn’t lose our livelihood.
These community organizations responded, saying they had no way to help us, and then they said, “Do your parents have a church or family in town?”
Well, when I explained our difficult situation to our relatives and my parents’ church, their response was, “We can’t help you. Have you talked with the government?”
When I spoke with our social worker, she said, “Well, we can’t conjure up a solution out of thin air. We can’t help you.”
And that was it… Either Mom faced losing her job or I was going to put off my studies (with no way of paying off student loans) so that one of us could stay at home with Dad full time. We had no clue what the future would hold, but we knew we’d probably end up in debt and in trouble. It felt like we were drowning, and most people around us had no clue, because they didn’t know what this kind of drowning looks like so they didn’t recognize it in us. And when I tried to explain to relatives and church members just how desperate we were, some of them got defensive and attacked ME.
However, a few extraordinary families and churches (not my parents’ church so much) helped us bridge that gap. They threw us a life-preserver in a very dark and hopeless situation. Because of them I was able to finish school, and we were able to move to a new place where our whole family lived under one roof and all of us kids pooled our resources so that Mom wouldn’t have to work and could stay home with Dad.
Oh, the lack of understanding in our whole society about what dementia is really like for its victims and their caregivers is absolutely stunning. I feel grieved at how under-prepared society really is for the increase in Alzheimer’s/dementia diagnoses that will come our way as the Baby Boomers age.
But on a much brighter note, the incredible generosity in the hearts of those who reached out with help for us is even more stunning. I feel encouraged that with compassion and sensitivity from people like this, there is still some hope for future dementia sufferers and their families.
Nice blog. Thanks for letting me know about it!
Thank you for your heartfelt words on “drowing.” So glad your family pulled together to help your mother care for your father. You are so right to say that many families are “clueless” about how a loved one diagnosed with dementia is going to affect their lives. Many baby-boomer family members “think” that all they will have to do is find a facility and place the responsibility on “someone else” but they are in for a RUDE awakening and countless days/night of reckoning! It will be interesting to see over the years how many “children of baby boomers” will be willing to give up their jobs/careers to provide 24/7 care for their mother/father … sometimes both parents at the same time. So glad that another church reached out to help you and your family. Over the next 20 years or so (baby boomers aging/retiring) the Church will have to address this issue of “honoring your parents” and what this issue entails in the 21st century.
Thanks so much for your kind comment, Shaelan. I’ve often wondered how the Baby Boomer generation and their children will respond to the growing cases of dementia and the unprecedented need for care this will create. I have a feeling attitudes will change and the importance of caregiving will be recognized. But it won’t happen on a wide scale until people are in that situation themselves.
Still, I think it’s worth telling our stories, raising awareness and advocating for families who struggle with this illness. I’ve been encouraged by the response of people who’ve allowed themselves to really listen to what these families go through.
My biggest hope is that the Church will decide to be a leader in its response to the coming needs. Somehow we Christians will have to come to terms with the reality that not all problems have quick fixes, that life isn’t about me first, that living out our faith sometimes takes real sacrifice that won’t be rewarded for a long time, that sometimes suffering does last for a while sometimes and this doesn’t mean that God has forsaken us. Life is hard and impossible sometimes, but the point of our faith is that we hang on to God through every step.
Do you have experience with this issue, by any chance? It sounds as if you’re familiar with long-term challenges/struggles.