3 Things I Wish I’d Known When I Became a Caregiver…
by Kathy Montero
In part one of The 3 Things I Wish I’d Known When I Became a Caregiver series, I shared that caregiving is a marathon, not a sprint. Setting priorities and re-evaluating activities that are either no longer feasible nor support your overall wellbeing is key to being able to go the distance while caring for a loved one. Trying to maintain all aspects of your previous life while taking on additional caregiving responsibilities will most likely set you up for burn out. I remember feeling like I was the only one who could fulfill all my obligations: my job, caregiving for both my children and parents, etc., I had no idea how or what to delegate or let go of.
One of the secrets to juggling everything is outlined in Part 2, “Creating a Village of Support”.
Have you ever noticed that your friends often reflect your current stage in life? When I was a young professional, most of my friends were, too. When I was married, I had more couple friends. Eventually, I realized that many of my friends had children the same ages as mine. Although some friends may remain steady throughout our life’s junctures, I suspect it is only natural to be drawn to individuals who are sharing similar life experiences. I was well into my caregiving journey when I realized I had few, if any, friends who were also caregivers. Although my existing network of friends was very supportive, I became painfully aware that listening to me worry, stress and agonize about my situation month after month was not pleasant for them. Yet meeting new people with my already overwhelmed list of ‘To Dos’ seemed unreasonable.
Gathering with fellow caregivers was one of the best decisions I made on my caregiving journey, even though I did it reluctantly. I joined a dementia support group, admittedly begrudgingly at first. The last thing I wanted to do was spend what little free time I had listening to other people’s sad situations. What I didn’t anticipate was all that I would learn and gain from these monthly sessions… Suggestions for how to deal with difficult situations (like how to tell your dad he can’t drive anymore and later how to coax him in the shower when he would refuse). They also freely shared resources such as adult day programs and volunteer services that allowed me to have breaks from caregiving, so I could recharge or even work! They also gave me the gift of not feeling so alone. Carrying so many responsibilities can feel heavy and isolating but being part of a larger group on similar journeys made me feel connected and lightened my load. Instead of feeling isolated because friends didn’t invite us to dinner anymore, I learned about Memory Cafés. Memory Cafes are gatherings for those living with dementia and their caregivers where they enjoy dinner in an environment that accepts outbursts and table etiquette others may find uncomfortable. I never would have imagined the many benefits of belonging to a good support group. I feel privileged to have such an incredible circle of friends now, many of whom I never would have met if we didn’t share the unfortunate predicament of having a loved one with dementia.
I’ve also come to understand that although specific paths vary, there is a fairly predictable route someone with dementia travels. We left each doctor’s appointment with only a follow up appointment and perhaps a prescription, but no road map or further navigation. For us, an Aging Life Care Manager brought experience, knowledge, resources and guidance. Initially, I didn’t fully understand or appreciate the job of a Care Manager, but I have come to value them as an integral role in my village of support. A Care Manager is an expert who helps families manage immediate challenges as well as create a plan, whether your goals include aging in place or exploring appropriate senior living communities. Although it’s unfortunate that most Care Manager’s fees are not reimbursed by insurance companies, I can tell you that a worthwhile one can actually save you money and headaches.
Another valuable member of your village should include an eldercare attorney. They can ensure you have all of the necessary legal documents such as a Power of Attorney, a Healthcare POA, living will and trusts to provide you with appropriate planning and peace of mind. Meeting with an eldercare attorney should ideally be done early in your journey. I suggest looking for one who is credentialed through an agency such as the National Academy of Elder Law Attorneys (NAELA). They have specialized experience planning for incapacity and the various complicated aspects of long term care.
In North Carolina, Dementia Alliance NC and Project CARE (Caregiver Alternatives to Running on Empty) are also wonderful agencies that provide dementia specific information, education and support.
Finally, check with local senior resources for agencies that provide adult day programs and volunteer companion services. These services can provide socialization and appropriate stimulation for those with dementia while allowing caregivers much needed breaks.
I suggest exploring resources before you actually need them. Creating a village of support does require a little time, effort and perhaps even money – most likely all in short supply, but the benefits and rewards for both your loved one and you are immeasurable.