3 Things I Wish I’d Known When I Became a Caregiver. Part Two in a Series

By Kathy Montero, Care Manager and Advocate 

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.

The secret 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. Then, 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 that 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 and year after year could not be pleasant for them. Yet meeting new people with my already overwhelmed schedule seemed unreasonable. Gathering with fellow caregivers was one of the best decisions I have made on my caregiving journey, even though I did it unwittingly. I joined a 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 with dementia and their family caregivers where they enjoy dinner in an environment that accepts outbursts and table etiquette others may find uncomfortable.  The group has evolved over the years, but 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. I recall thinking that once your loved one is diagnosed with a progressive cognitive impairment, we left each doctor’s appointment with only a follow up appointment and perhaps a prescription. No road map or further navigation. Enter a good Aging Life Care Manger who brings experience, knowledge, resources and guidance to assist you. 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. My first experience with one was to be a ‘neutral 3rd party’ to help with my in-laws as we weighed staying in their home with assistance vs. moving into a senior living community (of course, they didn’t feel they needed either). In the end, with her guidance, she helped us see that a senior community would provide them with accessible care and the privacy that was so important to them. Unfortunately, I didn’t further engage her to help us select which community would best meet their evolving needs. They only lived in the place my husband and I suggested for 6 months before one of them required additional care. While I thought I was saving money by not consulting with a care manager, that misstep cost us thousands of dollars in additional care, more community fees, and moving expenses. I didn’t realize all that I didn’t know about navigating the system. Although a Care Manager doesn’t possess a crystal ball to see the future, she can provide you with valuable insight and resources to help ease the burden of feeling it’s all on you and to help you make the best-informed decisions.

Creating a village of support does require a little time, effort and even money – most likely all in short supply, but the benefits and rewards for both your loved one and you are immeasurable.

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