Caregivers face challenges on many fronts when providing care to their loved ones. I know my focus, between Mom and I, became on her quality of life regarding affordability. When the balancing act between providing care and maintaining self-care made me doubt my idea of quality, the idea of offering her the ability to have a 'good death' started to come to mind more often. I was already battling my inner critic by fighting to feel that I was enough, but my efforts to provide the best quality of life for Mom had to be enough. My sisters not only had different perspectives but had already taken different sides and gone in different directions.
Others like Betsy Wurzel, LVN and radio talk show host of Chatting with Betsy on Passionate World Talk Radio, who has been on both sides of the coin, still walked away with resentment at the end of her husband's life. Feeling failed by the medical system and exiled from family members for standing up for her husband, Betsy has found herself in a position like many other caregivers. Unseen, unheard, disrespected, and quite frankly, tired of having to fight for a change in culture that should not exist in the first place. The lack of compassion and willingness to learn.
Is it fair for caregivers who need knowledge, services, and essential support to cross their fingers and hope the other person on the phone, in their time of need, also has compassion? Not one more staff, administrator, or doctor instead, waiting to say that she doesn't know what she's talking about. The problem is there are two sides to a caregiver's coin. Physicians and clinicians are increasingly aware of having to deal with the different beliefs of patients and caregivers about the provisions of palliative care. There is institutional knowledge, and there is common sense that family caregivers learn.
We see the good days, bad days, and the 'GOD, please help us' days. Because of our caregiver experiences, we can be more accurate in estimating our loved one's experience. And yet, the doctors, who do not have adequate experience in treating dementia patients, will dismiss caregiver concerns before admitting they don't know the answers. When my family treated me like I was the insignificant know-it-all, I felt hurt and everything my inner critic wanted me to feel. Then when I began to meet medical professionals and assisted living staff designed to help those living with dementia treated me in the same manner, I realized humanity needs a culture shift.
Why is dementia so hard to understand?
When will mental health become more of a priority in society? Dementia is often not diagnosed until stage 4 of 7, which is lost in time for reversal or significantly slowing down deterioration.
We need to be more educated on providing compassionate care for those living with dementia in all stages and how to prevent living with dementia in the first place. Until that happens, caregivers need to be seen, heard, and acknowledged. When I speak about Dementia, the Silent Killer, my hope is mixed with my shared stories that come from moments of brokenness. Dementia is poorly understood, and the very little that families and medical professionals can grasp leaves too much space for human error.
The early years when my family dismissed Mom's early signs of dementia created space for the family drama to fester and grow while her prognosis worsened. These outcomes made me feel that no one understood until I met Betsy and heard her stories about caring for her husband's mother, Matt, and her son, Josh.
The scary reality is that early onset dementia, including Alzheimer's, is rising in stats. Many families are experiencing drama and disconnection from not knowing enough about dementia yet having too much pride or not enough curiosity to get into the details. Too many think dementia is for older seniors in their 80s & 90s when that has not been the case for decades. Those with more intuition may still avoid getting into details because they either lack insurance benefits or want to avoid the medical professionals who don't listen. Individuals like Betsy's husband Matt was in his mid-fifties when diagnosed and passed at 56. My mother is 72 and in her winding down process after having her 3rd diagnosis of mixed dementia.
A caregiver's life is already filled with so many challenges. However, when caregivers are denied support, then everyone involved suffers. I hope you take a moment to listen to Betsy's heartfelt podcast account of how she was failed during a time of need to learn something for yourself. Matt's final weeks could have gone much better in terms of care. Betsy could have had a better experience with hospice. When we are all coming from our own perspective and not willing to understand the other side of the coin, we all come up short. Short of knowledge and short of compassion.
It takes a village, folks—a proactive village.