“Am I making the right decision?” “I’m so tired all the time and it’s never enough.” “How are we going to pay for this?”
The list of demands on a caregiver’s time are seemingly endless. Somewhere between the ever-increasing bills, constant follow-up on medical issues and mundane tasks, mental health suffers. Our reflection this month is not focused on ‘fixing’ this problem, we only hope to shine a light on it. If you are dealing with elevated stress, anxiety, depression or are struggling to find coping mechanisms we want you to know that you are not alone.
Each day, some of America’s 44 million unpaid caregivers consider how they are going to make it another moment, let alone the months or years ahead. Most caregivers find their lives altered immediately and irrevocably when a loved one falls ill or begins to need help. The experience can be unmooring as the center of your world becomes a spouse, parent, child, friend or loved one. Where do you fit and how can you get any needs met when there is no time or energy left over for you?
The reality is that between 40-70% of caregivers have clinically significant symptoms of depression. Almost three quarters of caregivers report they have not gone to the doctor as often as they should. As a result caregivers, especially women see increased rates of everything from smoking and substance use to cardiovascular disease.
How does this play out on an individual level? More often than not, the constant stress and anxiety changes the relationship between caregiver and cared for. In spite of the best intentions, tempers may flare, resentment builds and the relationship is no longer a meeting of equals but one person who is depended on and the other who is dependent.
We’ve seen a couple in their 90’s who met at Aragon Ballroom here in Chicago at a dance and fell in love within one month and were married within three months. Now the wife is caring for her husband who has Alzheimer’s. The man she loved no longer recognizes her and she hasn’t slept more than a few hours a night in the last five years. She feels guilty if she visits friends or is away from him for any length of time.
Another example is the daughter who lives in France and her mother had a bad fall and went to the hospital unexpectedly. Her mother will need to be in a nursing home for the rest of her life and there’s no one here to care for her. We will be able to act as her eyes and ears with weekly visits and updates, but recognize that nothing alleviates the sense of guilt she feels living so far away. She flies in monthly to check on her parents and is helping to sell their home but it’s no substitute for being close by.
Or the son who was ostracized from his family in his 20’s for being gay, and over a few decades rebuilt some semblance of a relationship with his parents. When the parents began to need help, he was the one expected to care for them because his siblings all had children. He goes to their home daily in the morning and evening after work to ensure medicines have been taken, food eaten and crises averted. The pain of the past is still present, adding to the weight of providing care without support.
These stories are a drop in the bucket, a few examples of the complicated connections constructed over a lifetime and altered in a moment. When you are caring for someone you love, there are no true guidebooks. While organizations like ours strive to prepare you, provide resources and a way to deal with the strain, everyone makes their way the best they can.
If you have seen changes in your mental health and would like to take steps to making a plan don’t hesitate to call us. Here’s a list of other valuable resources that may work for your situation:
- Therapy : psychologytoday.com
- Employee Assistance Programs (EAP’s)
- Caregiving Support Groups (https://thecaregiverspace.org/)
- Information (Caregiver Action Network http://caregiveraction.org/ )
- Connecting to free or subsidized resources (https://youtu.be/GOieVcwc03Y)
We’d like to thank the Family Caregiver Alliance for the statistic
s highlighted in this piece. More information on caregiving and mental health can be found here: https://www.caregiver.org/caregiver-health .
Thank you for taking the time to read our blog and consider this important issue.