As a busy professional, I approached the changes in my parents’ health and natural aging process with a cautious eye and perhaps overly positive mindset. When it became obvious that my Father’s mental decline was accelerating (he had not yet received any formal neurological diagnosis), I ramped up my approach and became more assertive, engaging the assistance of my brother who lives far enough away that he visits infrequently. Together we visited some Senior Living Facilities and approached my parents with our concerns and what we viewed as appropriate options. We were fortunate to have our parents settled into an independent cottage on a campus that offered a complete continuum of care before my Father’s medical needs became more than my Mother could manage in addition to his then diagnosed Vascular Dementia and Alzheimer’s.
Everything began to change around me except for the demands of career. Multi-tasking took on a whole new meaning during the next few years. I made several changes in jobs to be more accessible “just in case”. I had traveled a great deal initially, and it became increasingly stressful to be out-of-pocket when emergencies happened. I will say that no matter what I was doing during that time period, it just never felt like enough. Once Dad’s condition required him to enter a Memory Impaired Unit, my Mother continued to spend the greater part of every day by his side. I wanted to be there for him, but I also wanted to be there for my Mom. I watched her begin to fade away as time passed. There were several medical emergencies for her during this time, and there were moments when I wasn’t sure if she would leave us before Dad. During the last two weeks of my Father’s time here, Mom experienced a cardiac event and landed in an ICU about 45 minutes away from Dad. Being the only child in the area, I never knew whose bed I should be beside! No matter where I was, I felt I may just be in the wrong place. Even now, almost three years later, my heart rate accelerates just writing about it. To say this was an overwhelmingly stressful period, is an understatement. Fortunately, most caregiving is not this dramatic. However, there are pockets of dramatic events that can knock us off our center and it can take a long time to regain our footing when we are already depleted from the ongoing stresses of caregiving.
In my end of life consulting business, my focus has been on supporting the dying. One of the components of being of service is to be able to empty yourself out and be a conduit for whatever is needed for the person you are serving. I’ve found that this exercise goes beyond active engagement with a particular person and in doing so, have come realize that there is another whole segment of society that is in need of support and service.
The role of caregiver is one that can be the most difficult work you will ever encounter. For many of us, it is brand new territory not unlike taking on the role of parenting. We fuddled our way through those early days with our babies and many times felt like we were doing everything wrong. Most of the time we begin the role of caregiver to a spouse or parent slowly and in stages, but there are times when there is a health or accidental emergency that can turn our world on its ear in an instant.
Wouldn’t a handbook be grand, or a roadmap to guide us through the forest of adjustment? With more and more requests coming my way for information about caring for our loved ones, I decided it was time to share some of the knowledge I’ve accumulated along the way.
As I once again fill the role of caregiver now that we have brought my Mother to live with us, I’m learning and re-learning some valuable lessons that I’d love to share. And, I’m sure there will be some humbling moments that you may glean some humor or encouragement from as well.
In upcoming posts, I will begin to share ideas when you are still in the “about to be a caregiver” stage. You may be seeing significant changes in one or both of your parents that are pointing the way to changes that may need to be enacted soon. This is the time to begin to prepare. Actually, the SOONER you begin the better. In retrospect, we began the process with my parents almost exactly a year too late. Thank God we started when we did!
If I had a wish for you, it would be to give yourself the gift of taking the time to gather facts well before you need them. Go to the office supply store and buy a 2″ notebook and a couple of sets of page dividers and get organized at the start. Spend some quality time with your parents and take objective stock of what you see. Begin to ask them questions and get to know some facets of their lives that you probably have been avoiding. If you do things slowly, just a bit at a time your Mom and Dad won’t feel like you are descending on them and trying to shake their lives up. Be loving, be gentle, be respectful, but by all means, be present. Of this I know for sure, getting started early will serve you all well.
In my next posts we will start to look at ways to prepare as an expectant caregiver. I’ll give you some guidelines of who you want to speak with and what information you want to start saving.