As usual, I have been overwhelmed with thoughts and emotions that have prevented me from writing in a while. That is why I think this post needs to be about a caregiver’s general cry for help!
There are plenty of resources available for families, friends, caregivers and individuals diagnosed with various forms of dementia. Just through our medical provider alone we have access to a social worker, support groups with a social worker or nurse, palliative care, home health nurses, physical therapists and home visits from social workers. I have also contacted the Alzheimer’s Association with specific caregiving questions and even attended a daylong “Care-Partner Education Forum” on caregiving. The Alzheimer’s Association’s website (alz.org) has a multitude of resources available for a variety of help topics and each chapter offers a number of caregiver support groups. I have contacted A Place for Mom for assistance in looking for loving communities for Lisa and Joseph so we are ready when the time comes for them to transition into a higher level of care. I have reached out to Visiting Angels to seek substitute caregivers to fill in for me when I need respite. Oh, and I have enormous support from all of Joseph and Lisa’s family and friends! So with all these resources, how do I still feel so alone and helpless sometimes?
I can think of several reasons. First, every patient and family who are affected by dementia experience the disease and its impact extraordinarily differently. No matter how many “expert” opinions I obtain, none of them can be crafted to specifically match the needs of Lisa, Joseph and their family. It is like the wheel has to be reinvented with every new diagnosis. Moreover, as their mental status changes on a daily basis, the wheel needs to be reinvented every day! Sometimes even every hour! Much of the information I have read on caregiving talks about “Creating moments of joy.” There are a number of resources and creative ideas and toolkits available to help create these moments of joy. I have yet to discover the secret to motivate Lisa and Joseph to desire moments of joy…where is the toolkit for that?
Second, my time seems to be too precious to seek out more support. I am with Lisa and Joseph on average 66 hours per week. If I want to participate in a support group, that is an additional 2 hours per week (outside the time I spend with Lisa and Joseph). If I want to attend conferences, read materials or watch educational webinars that will generally need to happen on my off time also. When I call helplines or try to arrange caregiving alternatives, I don’t think it is fair (or respectful) to be doing that while I am supposed to be caring for Lisa and Joseph, so that happens after hours as well. I can easily increase my time spent with Alzheimer’s to 80+ hours per week! This disease has become all consuming!
The third challenge is how to manage Lisa and Joseph while I am seeking and receiving support. I scheduled a meeting with the social worker for their children and me this morning. That meant I also had to schedule a caregiver to cover for me to go to the meeting. Visits to care communities need to initially happen without Lisa and Joseph, so they require more substitute caregivers. If I do make or receive phone calls about care and support while I am at Lisa and Joseph’s house, I try to be discrete. Sometimes I pretend to be pulling weeds in the yard (well, ok, I actually do pull weeds) while talking on the phone. Sometimes I wander into the bathroom. But I always have to be aware of where they are, what they are doing, and whether or not they are safe. To say my attention becomes divided is an understatement! And I don’t think that is fair to anyone either.
Perhaps the most difficult barrier to getting help is Lisa and Joseph’s need for consistency. Last week, my granddaughter was visiting. In order to spend time with her, I took off every afternoon and had another caregiver (one they are familiar with) fill in for me. What a nightmare! I think we both realized how difficult Lisa and Joseph’s lives were that week, not to mention our own increased anxiety trying to maintain some semblance of a routine. Joseph’s sleep patterns changed drastically. Lisa felt even more helpless as it became crystal clear that caregivers were there to, well, care for her. Which, in turn, aggravated her and made her more belligerent. My naïve thought that I could simply call a Visiting Angel to watch Lisa and Joseph whenever I need to schedule an appointment or care for myself came crumbling down around me. The realization that to be a competent caregiver, I need to be 150% in hit me hard. I FELT STUCK!
I wish I could tell you how I get “unstuck.” The truth is, it feels like I am in constant flux. Some days I have to build myself up to go back tomorrow. Other days, I look forward to spending more quality time with Lisa and Joseph. I guess like everything else, I just need to stay in the present and handle each experience as it comes at me. In reality, I am not stuck, just tired and overwhelmed. I need to recognize when I am starting to become engulfed by all that this work entails and reach out for help. I cannot care for others if I am not properly caring for myself. No one can!