God continues to teach me through Mom and has to guide me through experiences that break my heart. When I thought my heart could not break any further, it did. On the one hand, it shows me that I am still human, and all the objective decision-making has not hardened my heart from broken expectations. On the other hand, I am furious with negotiating within the business of death and dying.
Learning to adapt to each stage of Dementia is challenging enough. When you realize that each adaption brings your loved one closer to the end stage, it's an added punch in the gut to balance their needs with poorly managed care communities, hospice companies, or strained relationships.
In many cases, these companies are not poorly managed but are profit driven instead. These moments are opportunities to remind me why I need to have flexible boundaries. Even though it often feels like Mom and I are alone on an island, others offer a helping hand, a shoulder to cry on, or an ear for me to vent. Relationships continue to change as our boundaries are challenged and sometimes violated. Caregiving adds another challenge as we learn to negotiate and revise our limitations.
Just as we feel that the journey has become easier, life shifts to the next level. Although each lesson learned early on is still applicable, the growing challenges, continued decisions, and resistance to change will not stop.
We need each other because we are stronger together. However, forging a trusting relationship is not always easy. Becoming proactive also means becoming an advocate. Sometimes it is hard to advocate for our loved ones because creating healthy boundaries and speaking up for ourselves is challenging.
When a caregiver finally acknowledges they have reached their limits or their boundaries can no longer be held, this understanding typically leads to those tough decisions. Finding the next forever home can be a shot in the dark without genuine referrals. I had limited information, and Mom had limited resources to find the best place that checked off as many boxes on the wish list as possible. It took moving her three times to find the location that checked all the boxes. Still, I never stopped having to advocate for her needs.
I never expected to deal with situations that seemed like common sense yet became a battle with regulations when dealing with management. Sometimes, our journey feels like a country song with lyrics, "I wish I knew then what I know now." Just as my parents were not given a handbook on how to raise me differently from my siblings, I was never given a handbook on parenting Mom as she lives with a mixed form of Dementia and Bipolar disorder.
It is refreshing to connect with more caregivers who speak of the same problems from caring for our seniors since I know I am not alone in this journey. Yet the reality is still overwhelming because those conversations affirm so much change is needed. For instance, assisted living communities operate within regulated guidelines, but the interpretation of the outcome varies. These variations make it more challenging to advocate for Mom's needs. Therefore, the negotiation requirements within these relationships are far more stressful.
As a business owner, I can appreciate what goes into cutting costs to create an attractive net income for potential investors. However, residents and employees suffer when attracting investors becomes the main focus. The problem is cutting costs turns into an internal game of lowered integrity and offerings or bait-and-switch operations where the care for our loved ones becomes overpriced and inadequate. Expectations of compassion change as the turnover in this industry ravishes the supply of professional caregivers. Caregiving is the most challenging job. We all get caught in the crosshairs of what we need versus what business services provide.
For me, accepting this reality meant understanding what drives the budgets for assisted living communities and learning how to negotiate. Knowing what concepts I can let go of and what I have to fight for is tricky. The first two communities Mom lived in preferred to have residents that did not have family who visited often. The auto-draft for monthly rent is set, and no one was present to advocate for the resident, making their job easy.
If we could move our loved ones into a community and step away for respite or recoup from burn-out, we could maintain our health better. However, this is impossible for many caregivers because as long as your loved one still draws a breath, your caregiving advocacy job is not over. It also means the emotional care contract between you and your loved one constantly evolves.
The mourning phase will still happen, and no matter how much time passes, your love and longing for a hug from your loved one will never cease. However, a new role begins as a caregiver advocate. Our work is never done because so many walking the steps you have are not as far on the journey and need your advice or to hear your story.
Not only will your story provide a bright light for them to follow, but it will also keep the industry in check. Many caregivers who have experienced the regulated business's rough side can feel defeated. By not speaking out, posting reviews online, or sharing your story - other caregivers are at a disadvantage. I remember what it felt like when I first started to tour assisted living communities—not knowing what to ask other than, "How much will this room cost and what is included," is nerve-wracking!
Having to educate staff about what Dementia is and how to work with your loved one should be a regulation requirement - and it's not. So we, the caregivers, must advocate for our loved one and teach the industry along the way. I have learned that each relationship along this journey is a contract with specific expectations. Still, nothing is written in stone, and each contract will eventually require revisions.
It should not be this way, but it is the reality we are living in right now, and being proactive rather than reactive will make a difference for us all. We are stronger together.