My mother spent 10 years taking care of her one remaining parent, while intermittently traveling back and forth visiting her grandchildren. My mother is an incredible person - sensitive to the needs of others and steady in a crisis. After watching her mother’s very slow decline, she announced that she will make steps to move closer to us - her three children so that we will not have to travel too far to look after her when she starts to slow down.
First, let me say that I did not take this announcement very graciously. I wish she had wanted to be closer because she loved spending time with us or that she missed seeing her grandchildren and wanted to see them grow up. She is practical. I will take it.
My grandmother lived with Alzheimer’s Disease. She eventually received disability benefits that included a visiting nurse, help to clean her home, residential senior services and lastly hospice. My mother navigated the paperwork to maintain and select the best plan and services for her mother, while also having to accept and grieve that these services would not help her get better. She then shouldered the burden of convincing everyone that they were making the next best move.
The other day I was talking with my neighbor, who was similarly trying to get her 90 year old mother into a place that would better help her live out the rest of her life. For the third time now, her mother had refused to move after a delay between getting her consent and waiting for a space to open. Many of us struggle to help our loved ones - elderly parents, children with mental health challenges, spouses with substance abuse or chronic health conditions (diabetes). Our emotional burdens are often compounded by the inhuman barriers we encounter.
While our country actively shuts down mental health hospitals and develops more community based supports; our health care systems in general have failed to help people when they are in the most need. The responsiveness to a stated need is impeded by administrative, policy, or insurance coverage minutia. A true person-centered, humane response that provider’s, in fact, want to provide are reduced by the system pressures to account for resources spent and justify the provision of care.
When do you get help for a person who suddenly says they want help? When do you want to get your mother into a nursing home when they say they are ready to move? The answer is immediately - you can’t wait a day let alonea week for an opening.
So, where do we start?
I believe we need to have a full picture of what we want to see be possible and develop a range of those options. Residential housing, affordable but skilled nursing care, personable navigation support, home care assistants paid a livable wage and media campaigns that help us make it part of our societal norms to talk about how we will live with dignity as a senior citizen. Let’s create communities with the idea of accommodating a range of people, families and children with easy access to health care, entertainment, and wellness activities. Develop programs that bring preschoolers and senior citizens together in one space. Make portable homes that can sit in a families yard affordable, so families can provide a separate but safe living space for an aging parent.
We need legislation to properly certify this continuum of care; and transparency so when our loved ones get the help needed we can also account for how our dollars were spent and assure that prevention and early intervention efforts aren’t at risk when new legislators are elected. We have an opportunity to create economic development, meet a tremendous need, and provide humane, person centered care all at the same time.