Almost every post has a few common themes: Tired, alone, seeking answers. No matter the specific question/topic about our LO's w/ Alz & Dem, we all have that same stress & strain in common. We are all WARRIORS. The country, (possibly the world), has no idea the crisis that's coming as the disease becomes more prevalent & more caregivers are needed.
We simply do not have the support structures in place to address the needs of all the Alz/Dem patients, and definitely not for the "village" of caregivers' families for each patient. How do we fix this? How do we change the narrative so that our family/friends/doctors/legislators, etc fully comprehend what's at stake? How do we get our siblings' families to understand that EVERYONE is responsible for Mom/Dad/Grandma/Grandpa, not just one person or one family? How do we get our doctors/hospitals/soc workers to understand that when the caregiver's needs aren't met, it's likely the LO's needs aren't met either. When a CG is operating on a sleep deficit, their stress level is felt by the loved one & may exacerbate behaviors/fears/anxieties, forming a never-ending vicious cycle. How do we get our local, state, and fed govt to provide services, allocate funds, raise awareness NOW rather than later? How can we get more help to rural communities, to marginalized communities (current studies are showing non-white communities having higher occurrences, up to 2-3x the rate of whites) when we know the likelihood they will be hardest hit?
Often aging at home is the cheapest route, but are we willing to put our money where our mouth is by supporting caregivers' & patients' healthcare needs to keep the at-home option viable? Shouldn't we be looking into studying this economically? Should physician/nurse/PA, etc training include some hands-on Alz/Dem care as a step to licensure? We've almost all dealt with a doctor or two who are baffled by things we deal with every day, am I right? We need more than just rote suggestions & talking tips sometimes. We all know about caffeine & triggers, etc. Sometimes what we really need is a service that will come to the home to help with a lift, to calm a combative patient, or to provide a caregiver in-home training or help applying for grants/programs for themselves or the patient.
These services are out there sporadically, but not for everyone. Are there ways to offer/streamline/tailor them for better efficacy? To a lot of us caregivers, just being able to get family/friends to understand & validate our struggles & offer help is a HUGE task. WE. ARE. NOT. EXAGGERATING. when we tell you "Mom shakes me awake 20 times a night to ask me what day it is" or "Dad acts up when I try to do household chores to keep me from getting them done." You, Sibling, are the 'shiny thing' that visits & you get the best behavior while I'm the old hat that sees the worst when you are gone. So many things are being missed as we CG's try to just cope day-to-day, putting band-aids on while we are really just burning out. For those non-CG family members out there, even the smallest of gestures makes ALL the difference. I have a sister who makes sure I never run out of tea bags, sugar, ziplocks, baby & chlorox wipes, trash bags, paper towels, tp and bleach. She does all our laundry. She is a godsend! Her hubby drops us off groceries and takeout here and there. Their kids have devised games of asking? "Mammy, what's your favorite____?" to combat her circular-talk about her parents & brother, all lost to cancer, all things that make her cry.
We all can do these little things for the caregivers out there. Even from long-distances we can send gift cards for take-out/delivery, pay a bill here and there, write a letter & send physical pix, send a care package, hire someone to mow the yard, anything to show you care. Be available. Check in. Ask. Listen for what the CG, the patient need. Maybe just listen to the CG vent from time to time. (Hint: do not compare Alz care to that time you babysat your grandkids. Not the same AT ALL.) If you get tired of hearing us talk of nothing else, take us out for the day and give us memories for our conversational wheelhouse. We want to be part of the world, too. We want political opinions, to know what movies are playing, etc. Get engaged with us in ways we need.
We CG's have to get better at asking for things, the earlier the better. We are doing HARD work. We need tools!!! We need TIME. Each & every one of us needs the ability to say, "Come & get Mom/Dad, I need to get some sleep/have some downtime/clean the house/have a cooking day/make a store list-schedule-meal plan-etc uninterrupted." I know we don't all have this resource w/family, but ask friends, local orgs, etc. The more ppl ask, the more a need is SEEN. I've written ALL of this bc this is what I think about. I worry about each and every one of you CG's out there. If you're reading, plz post some things you need or want, the simple to the fantasy stuff. TY K