In 2015, life changed for me. I became responsible for my disabled mother after my father’s death. As I took on the roles of financial adviser, caregiver and social director—as well as my continuing role as daughter—I found herself asking “what do I do?” and “where do I start?”
I brought my 25 years of experience as a consultant building and enhancing corporate training programs for Fortune 500 companies in the United States and Canada to the problem and, in the process, learned how many other people are in a similar situation caring for a parent, a sibling, a spouse, or significant other.
I have used the knowledge I gained to develop advocateformomanddad.com—a website that offers practical advice for caregivers and lessons learned from others on how they handle challenges on legal, financial, insurance and caregiving issues.
I recently published a book, Your Caregiver Relationship Contract: How to Navigate the Minefield of New Roles and Expectations. It is a lessons-learned book based on my last six years as a caregiver, first for my father and now, my mother.
I became a caregiver in 2014, when my father was diagnosed with congestive heart failure. Rather, I should say, I identified myself as a caregiver when Dad was diagnosed. I am currently and have been for five years my mother’s caregiver.
She is legally blind with mobility issues but otherwise is in good health. Being a caregiver is hard work. I don’t mean the physical work of helping your loved one shower or dress. I mean the mental and emotional work it takes to be a caregiver.
In doing this work, I realized that the most important lesson for me is that becoming Mom’s caregiver changed our mother/daughter relationship. Our contract, if you will. This idea of a relationship contract resounded with my clients and readers of my blog. Because it helps us to recognize that there is an unspoken contract while inviting caregivers to do the hard-intentional work to co-create a new one.
It helps to understand that a relationship contract is not a legal document. Rather it is the informal and often unspoken ways in which people agree to be in a relationship. What are we willing to do—or not do—for one another? How do we support one another? What are the social outlets and shared interests that bind your relationship together? These and other questions help to define the interactions and expectations for each relationship, in other words, “the contract.”
Through my work, and as my relationship with my mother changed, I realized that other caregivers face many of the same issues. If your loved one’s expectations for caregiving are one’s you can’t meet, then how do you have that hard conversation?
As I point out in my book, not only did our mother-daughter relationship change, but the contract my mother had throughout her 61 years of marriage dissolved upon the death of my father.
Over the years my parents had developed morning and bedtime routines. I realized during Dad’s first hospital stay that Mom’s unspoken expectation was that I would continue to keep them up. After all, she was comfortable with them, so why would she expect anything to change? As for me, why wouldn’t I continue them? I was new to my role as her caregiver and assumed this is the way things must be done.
It quickly became apparent that Mom’s expectations and mine were not going to work. During the two weeks Dad was in the hospital, I worked full time out of my parents’ home, which meant I was working between hospital visits and until past midnight most nights.
In addition, I made sure I was with Dad for breakfast and doctor rounds, then again for dinner. On top of that schedule, I was Mom’s caregiver, responsible for grocery shopping, laundry, cleaning, putting out garbage and recycling—really all the tasks at their house. Then, there were daily walks for my dog and my parents’ dog.
One night, sitting right next to her, I fell asleep watching TV. I mean I was asleep. My mother could not wake me—not by calling my name, not by shaking the chair with her cane. It wasn’t until the dogs started barking that I woke up, a good 10 minutes after my mother had initially tried to wake me. It scared both of us.
This was when I started to realize that I could not continue caring for Mom exactly as Dad had cared for her—at least not if I was going to keep my sanity and my health.
Given the amount of time I was putting in, by the time bedtime rolled around, I was beyond exhausted. But before I could go to sleep, I had to take Mom’s blood sugar, put in her eye drops and get what she needed to brush her teeth. Then, in the bedroom, make sure the curtains were closed, the bed turned down and that she had clothes for the morning and water by her bedside. This was my parents’ contract for a bedtime ritual.
Every night, I could feel myself tense up and get angry at everything I had to do before I could go to bed. Finally, not long after the sleeping incident, I said, “Mom, can we talk? I am exhausted and overwhelmed. We need to change something in the routine to get you ready for bed. It would be helpful if I didn’t have to bring everything you need to brush your teeth into the kitchen each night. Can we find a place where we can store it?”
For some reason, that one task—carrying things from the bathroom to the kitchen and back again—made my head explode. Every. Single. Night.
Once I brought this out into the open, Mom was willing to make the change to our routine so together we figured out the best place to keep everything. Taking that one task off my plate helped me physically and mentally. Later she took over putting in her own eye drops. Mom’s willingness to change was a blessing and opened a door to solving more problems together.
This was the first time my mother and I co-created a change in our relationship contract. This discussion helped me to understand how important the language used is for a positive outcome when you ask someone to change.
Whatever you do, I beg of you, don’t start the conversation with, “You need to…” or make it about their choices. These openings will shut down the conversation before it even begins.
“You need to stop driving. Your reflexes have really slowed down and continuing to drive is dangerous.”
“Why are you standing on that step stool? Don’t you know you can fall?”
It is better to begin these discussions using this technique: a non-threatening comment or question, an expression of concern and a suggestion or open-ended question.
For example: “Mom, I’ve noticed several things in your refrigerator have expired. I’m worried that you’re not getting enough fresh produce and protein in your diet. When I cook for the week on Sunday, I’d like to drop off some fresh food that you can easily reheat. Would that be OK?”
This is the most important consideration to successfully co-create a caregiver contract. Please don’t parent your parent.
“Throughout our caregiving years, we can fall into the trap of trying to parent our parents. In the early years, safety is typically the biggest concern. You may find yourself saying things such as “you need to move into assisted living where you’ll be safe,” or “you need to stop driving,” or a hundred other admonitions that take away their independence.
The words “you must,” “you need to,” “you should” or their countless other variations are not a particularly productive way to bring about change in a person who has been doing things a certain way since before you were born.
These last years as Mom’s caregiver, as well as in my work as a Certified Caregiving Consultant, have continued to show me how we must honor our loved one’s experiences and desires. It is in trying to find the middle ground, where our desires and needs intersect with our loved one’s desires and needs, that a caregiving contract will help.
Meeting in the middle takes work. The biggest hurdle we have as our elderly parents’ caregiver is to come to terms with this truth. If your loved one has the mental capacity, he or she has the right to make the wrong decision. You can only try to keep them safe in that decision. This is hard. But recognizing it is essential to a new relationship caregiver contract.
Too often our concern for health and safety becomes the single biggest factor in caregiving for our parents. We discount their need to direct their own life, which is something everyone needs at each stage in their life. It is our job as caregivers to find a way to balance our desire for mom or dad to be healthy and safe with our parents’ desire for independence and autonomy. Co-creating your caregiver contract will help you find that balance.
Debra Hallisey, a Lawrence Township resident, is a caregiver knowledge expert and an advocate for older adults and their families. She is a Certified Caregiving Consultant and Certified Dementia Practitioner. She holds a master’s degree in leadership and supervision, and is currently taking additional training to become certified as a Certified Caregiving Educator and a Certified Caregiving Facilitator. Her book, “Your Caregiver Relationship Contract: How to navigate the minefield of new roles and expectations,” is available on Amazon.com. Hallisey will be speaking at CareOne in Hamilton on Thursday, Feb. 27 at 11 a.m.