Burnt out & band-aided?

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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

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When I was caring for my bedridden mom in my home 24/7 I had very little help. My mom passed away 2 years ago. I am an only child and my husband works, but he did what he could. During this time I even suffered a retinal detachment and had an operation, and it took several months to get my eyesight back in one eye. It would have been nice if friends would have brought a dish or even a bag of fast food once in awhile. They stayed away. Now that my mom has passed on these friends call again, often they need favors, rides, etc. I am hip to that and now often make myself unavailable. This has left me with anger issues toward many people that I largely keep inside. The best help I did get with my mom was from hospice, though they were only here a few times a week. They kept me from completely having a breakdown.
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You have just posted my life. Community Medicaid has allowed me to keep husband at home . Daycare 5xs a week , with an aide for 6 hrs a day on weekends. This might be worth looking into , it’s a difficult process to navigate but it may be worth the trip in the long run. God Bless
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Reply to Justginger1
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OrphanA, I do agree, the middle class are hit the hardest. Not poor enough to qualify for help. And not having enough money to private pay. But that was hardly a racist comment, in my opinion anyway.

If anything, she was looking out for all caregivers and the afflicted as well, no?
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Reply to Pepsee
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The only thing I need is "SLEEP".
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Reply to tperri123
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Wow...I would take that essay you wrote and send it in to USA Today or your local paper. You nailed it. Know what you mean about the little things...my only sibling is out of state. If I email, to vent, to update...there is more often than not, no response. You feel like you are not even being acknowledged or listened to, and even just that means something, makes you feel less alone with it all. I have accepted her not living here, and my caregiving role...but while one doesn't want to burden friends, one expects that family will be there, if only to listen.
You are also very right about the actions that need to be taken. Too often it seems low income people might be forced into training programs and working and they have little interest other than maintaining benefits, working the system...consequently these are not people committed to taking good care of people, and we are forced to trust them in our own homes with our loved ones. Even more frightening is that many of those of us in the baby boomer years have opted to be single...so there will be very limited circles if any to take care of us, look out for us. We need to turn caregiving into a highly respected, better paid profession with not only education but licensing, as for nurses and social workers. I'm sorry I can't think of the name of some professionals who have written a book(s) about this topic, about the implications for the future.
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Kbr1881 Jul 25, 2018
Thank you for your response. I really feel you on the alone/no response thing, especially in that we tend not to ask for help unless we really, really need it.

I found myself venting a lot to one sibling via text bc I simply NEEDED someone else to know what was going on, and it was also a record of things that occurred bc I'd get so fuzzy-headed from lack of sleep, I could barely remember what day it was. I know it was overwhelming for the "ventee", but I had few other options. Has it been that way for you too?

It's really hard to get people involved who don't want to be. I'm still working on that in my situation. Mostly, I don't have the mental/emotional capacity to deal with anyone else's guilt in the family--guilt & fear that keeps them away except for the "I'm sorry I haven't done more" type statements that don't do anyone any good.

I hope & pray you find the resources that you need because I know how hard it is to go it alone and feel free to DM me anytime you want to vent. ❤
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KBR, that's quite a first post. You've captured a lot of the issues.

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.
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Kbr1881 Jul 25, 2018
Wow, I really feel the same way on a lot of things. I don't currently have political or lobbying experience, but there has to be a starting point for every movement and I have been attempting to communicate with local reps running for office on the need for Alz/Dem resources for more than just research. Getting them to listen right now is difficult with campaigns in full swing, but I'm not letting up. We can change this narrative if we can change minds about Alz/Dem. I'm old enough to remember when cancer was a word people whispered, lest we give it Voldemort power, and now people aren't afraid of "kicking cancer's butt". It isn't the same battle for Alz/Dem, but just getting people informed about it and taking the scary factor away is a huge step to get more people involved.
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I feel this country does nothing for their people. Europe seems to be ahead in caring for the elderly. I still can't understand how Canada gets pharmaceuticals made in the US cheaper than we do. Why do the drug companies feel its OK to raise the cost of insulin drugs, a drug that without it a person will die.

I too did not think that was a racist comment. She was stating a fact.
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Reply to JoAnn29
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Agree with everyone! There is no current, long-term solution. I am just focused on dealing with my mom's caregiving. I am fortunate in that she has funds for now, but it has been an emotional and physical semi-nightmare for the last 4-plus years. I feel everyone's pain. We are stuck -- but still have choices. I am trying to reach out especially to those not yet enmeshed in a caregiving scenario to plan ahead, set boundaries, and determine NOW their limits on caregiving through my own website. If interested, message me. Don't want to violate any policies regarding advertising, promoting as I love this site too! I have come to see that everyone has a choice in taking on this Herculean task!
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Reply to tornadojan
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Wow, awesome thoughts, Thank you for taking the time to posting it!

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!
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I am a CG for my DH, who is disabled and on hospice care. I just called the hospice to ask for more help, as he is becoming more and more shaky, physically. I feel all alone most of the time. Our youngest daughter lives about 20 minutes or so away, and is always available if I have an emergency in the evening, but we both work full time and she has two children plus operates an AirBnB out of her second floor. She does as much as she can, but most everything is on me. We qualify for almost nothing, so there is no help there. I have little family left and his family lives out of state, so there is no help there; emotional support yes, but no practical help. I am so tired most days, as I am often up with him at night, that coffee is now my BFF. I am hoping the social worker at the hospice can give me some concrete help/ideas because I am just plain exhausted.
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