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
Damd Katie22, I'm so sorry you suffered through all that alone. Please see a therapist and get that anger out. This is your time!👍
Resentments are like mixing up a poison for someone, then drinking it yourself. Get better, you deserve it.💖
Ok my biggest need right now is... Dr's who will take my concerns and Mother's needs seriously. Neurologist
looked at two MRI's Mom had after both her strokes. When I asked about, alz, dementia, Parkinson's, all I got was, *you can't test for those things, they're only confirmed in an autopsy after death!*
So ok, what do I do for her NOW? Her memory is horrible, she can't walk, can't hold herself up in a sitting position, plus shakes/trembles like crazy! AND she'll get caught in thought loops for weeks and it's always one's that makes her cry!
Yes Dr's need to take me seriously! I was told last Friday by PCP, she'd have hospice here this week. Well today, being the next Friday, is a week no hospice. I even left a message at her office on Tuesday to remind her. Hmmm.
And don't tell me just have the pharmacy call you for med refills, then you never get back to them....Did that on Monday....still waiting. Meds ran out Wednesday!
My Mother is important...if you can't handle more patients...don't take them on!
Thankfully we see her today...yeah, I have some thing's to say!
I'm referring to "marginalized" here as there being a disproportionate representation in the healthcare fields, in medical studies, in drug trials, etc. of PoC, and that means less of an understanding of how these populations are affected in all things from prevention to care to CG needs, etc. Having a higher risk factor without resources & representation means marginalized communities will have less of a voice and that's not good for any of us.
If we're not looking at why AA's are 3x as likely to develop Alz, for example, we very well may be overlooking a cure for ALL Alz patients, or at least prevention or methods that will slow progression. Getting the medical community to focus on this will be a benefit to everyone.
Also, access to healthcare can affect a wealthy rural community more than an impoverished urban one and affordability may not be as much as an issue for some people as driving 3 hours for a good neurologist might be. There are so many factors involved and I, even with my horrendously long post, only touched on very few.
If anything, she was looking out for all caregivers and the afflicted as well, no?
I think many of us have thought the same things, when we're cognizant enough to think clearly.
But I think the issue also comes down to education, perhaps training and funding. The middle class will continue to address the issue of paying for care, and being caught in the literal middle. And there will continue to be a range of problems on multiple levels.
But, unless we're going to revise the private pay system, we need to look to governmental support. And we may even need that just to address nonpayment issues.
But how will that happen in an administration that was callous enough to separate immigrant parents from children? Do you really see any hope (other than some specific legislators who are in touch with their constituency) for the current administration to even recognize this as a problem?
The Statue of Liberty has literally been politically blindfolded; there's a lot of work to be done to raise consciousness levels of the population, including those who aren't caregivers; their support is needed as well.
And given that elections are coming up, how can the need for political support for the caregiving cause be raised to target those in the political race? Have you ever lobbied? Even been involved in political lobbying, at any level? Any grassroots experience?
Caveat no. 1: this isn't an intent to provoke a political argument; it's a fact of life, and needs to be considered if any relief is ever expected to be gained.
Caveat no. 2: KBR, this is not a criticism of your concern, efforts or suggestions. It's intended to be a reality check, and a sincere opinion on the need for political support if changes are to be made, even if one step at a time.
I too did not think that was a racist comment. She was stating a fact.