The Fragile Home – Resource & Restoration

For many people, nothing brings more hope for relief after a long frustrating week like Fridays. Thank goodness for Friday right? Well, chances are if you are a disabled household, or caring for a family with medically fragile members in chronic crisis, Friday does not carry the same joyful anticipation of rest, healthier households look forward to.  Especially if any of those members suffer conditions related to mental health disorders and/or combined cognitive, medical conditions.

Thousands of hidden, unrecognized households face heavily layered tasks, more suited to a registered nurse, clinical psychologist or EMT trained through hundreds of hours saving lives. Imagine the oncoming weekend knowing what is waiting are any of the following situations:

  • severely Autistic children with mood dysregulation,
  • a husband home from a tour of duty and in the grips of crippling PTSD,
  • elderly couple with a son suffering early onset Parkinson’s Disease,
  • daughter and mother battling late-stage breast cancer,
  • mother with triplets whom each have sickle cell
  • a single mother recovering from open heart surgery who’s 8-year-old daughter is still in chemo for leukemia
  • a recent amputee in prothesis transition, combative and angry
  • Husband fired for missing too many work days because he is caring for his partner with a colostomy bag and suddenly having no medical insurance for them

All the above are real-life situations a few families registered with Angels of Our October have opted to openly share. I can confirm myself the intensity of being disabled having my own urgent needs but have to leave them unaddressed to sit hospital bedside with my very ill children. There are so many combinations of medically fragile homes, making life a hardship, that healthy family never think of. Much of that has to do with the associated isolation being really sick causes.

The importance of this is directly related to the fact access to supportive resources often shut down or close early like everything else on weekends and work only on an emergency basis. They likely charge after-hours fees if even accessible to utilize. With school out of session, mental health agencies closed, and respite services and most home-health companies chronically understaffed, Friday evening through Sunday night become the most work-intensive days of the week.

I remember, many days before I became disabled myself, my employment work was more of a getaway and rest, than what waited at home. That was before I became disabled and before I became a mother of two medically fragile children. Who, unfortunately, along with me, suffer PTSD as a result of domestic abuse received at the hand of my now ex-husband, their father. My household struggles on many fronts and I do it without any local family or friend support. For us, and so many others the blessed weekends can be anxiety-inducing. There really are a number of variables that can make managing such medical crisis a theme and baseline for the home. Due to the very nature of a disabled home, resources become a lifeline, even if threadlike thin. Not all disabled homes are as functional as mine. I have a father who is literally my lifeline and incredibly supportive. I benefit from having worked tremendously hard to heal and overcome most of what had hindered us. My home is stable and in no form of danger. The only wildcard remains to be health. That does not mean death and homelessness are hovering with every breath I take. For me, that’s just a really awkward song from my childhood year. Oh, I just got chills. If you had a flashback to the very first few MTV videos of that song, welcome to the old folks club.

In my years as a disabled adult, I have become used to the stares and jeers of people who see me park in the handicap slot and roll their eyes as if they have the right to pass judgment. I have dealt with the whispers of adults wondering why I am asking the grocery clerk to use extra bags or be very specific on how to place my items, and even the gruff comments of some feeling I am being too lazy to carry something for myself. Dealing with a more “invisible” disability has its own unique challenges. Not that I need a stranger to validate I am sick, my physicians do that just fine. But it would be nice for people to back off on judgment, just because I appear too young, to need such supportive services. Knowing and recognizing a disabled family managing medical fragility is not always an easy thing to pick out.

People judge based on what they know, and the disabled home is not an open discussion being engaged. Educating people, giving voice to those needs is a very important part of supplying resources. Our families are in desperate need of many types of resources. As an example, I will share an everyday life situation I face. Grocery shopping is rough and places me in really difficult positions especially because many days no one is well enough to carry them. My oldest son is rarely able to come with me. He is simply too weak and too confused by his brain injury to manage outings. The few times he does come, outsiders expect him to help. Being a 200 pound five-foot-seven 15-year old wearing a size 14 shoe and a beard, have assumed and said, “Young man why aren’t you helping your mother”? Now although I appreciate the attempt to instill manners, you do not know people’s situation and in this case, it was a cruel statement to make to a boy who already feels incredible guilt he can’t help. Honestly, if he had tried, it would have landed him in an ambulance or too drained to walk into our house once home. It’s happened in the past and I have had to nearly carry him piggyback into the house. That makes no sense for my damaged spinal cord to attempt. I’d rather carry the water jugs, please.

My point is, I have to manage the simplest things with precision to not trigger the delicately balanced medical conditions in the home. My spinal cord injury does not need to carry 20lbs of water, but I need to avoid having to lay in a hard hospital cot or bench for a week even more because I pushed or strangers have guilted him to carry items. We have learned to balance bad against worst, and worst against horrid, regularly.

Often I hide our pain because people grow tired of the bad news. It hurts when people unknowingly send those signals. Without even paying attention, society communicates very short-lived tolerance when someone’s illness, injury, or mental health condition does not go away fast enough. Society represses the sick and disabled too often. There is pressure to “be ok” and not need any help that requires others to do something.  So you suffer in pain and at times forced too secretly. Such ideology and perceptions of disabled homes create resistance to offering appropriate resources to that family. So speaking out in this way hopefully begins to draw awareness. Supply enough support so that a family can dig out of the crisis, and not simply restrict things in a way that only permits a house to merely get by, suspending them there. I am not saying, no frame and requirements are in place. More so, that the frame is more realistically built to flex to specific limitations in that medically fragile, disabled home.

Regardless, when it comes to needs, I have mastered resource management at the highest level. But that absolutely does not mean there are enough resources to pull from at all. Fortunately, so far  I manage well and have prevented our medical crisis from imploding our lives. Not that everything is ok. But giving up and caving to the panic, I intentionally fight like hell. It irks me when people try to decide for me, whether something is too much for me or not. If a family is poor but has a PS4 does that make them irresponsible? Or a disabled home decides to adopt a dog, or an amputee purchase a car, are those wrong? Not at all, a hardship does not mean destitute, and you never know if those items were obtained before an injury or illness. Further oppressing a hurting family makes no sense. Offering or supplying resources to a family should not require them to be a dirt poor, nearly homeless. Sadly, the way the majority of community agencies establish eligibility, disabled, medically fragile households get left out. The goal needs to be preventing the dirt poor, just shy of homeless status and allow our households to prosper, gain greater independence and stability and avoid becoming more intensively needy.

So many days what gets me up, and empower me to place my feet firmly on the floor, is a belief what God placed in me is capable material, lovingly tended to, and sheltered from the storms of despair. Having said that, it is the pain of my physical disabilities, the torture of watching and knowing my children are in agony often, and the reality I must not allow distractions to make me careless, and fail to be tender and overcoming, that prompts and launches the prayers that yield the faith to fuel the belief. I am not alone. This very same sentiment is echoed by many other Moms I meet in the grips of similar situations. In fact Andra Day’s song “Rise Up” could literally be the inspirational theme song of my home, this site, and many households determined to push through any and all obstacles. Resources of all types are cherished.

The disabled home needs resources more than any other thing. Whether it’s food, transportation, errand assistance, cleaning, and laundry, to an uninterrupted restroom break. Every minute has an assigned task whether planned or unplanned. So to have a friend drop off a meal once-a-week is a godsend. Someone who can drive and pick up the groceries ordered online and already paid for can be stress reducing. Or having a shared time-bank so that disabled parent can take a nap without fear, or go to a mediation session to decompress. I miss that the most in life. Enough moments to decompress and center me to carry on the battle for life. Resources of every type and size matter to households like mine.

What has changed in current society is how and where a family can obtain resources. There is an incorrect notion that there are programs for everything and an agency for each type of problem a household may have. I am constantly handed a sheet of agencies listed with an assortment of services that are assumed to be useful. Most of the time, and sad to say, rarely are those lists any type of help, or I have already used them in the past and learned it’s not truly accessible. For example, during times in which we have used in-home therapy teams, The Relatives, safe-home, primary for teens, phone and address is given to me as an emergency place to use if I need help. Primarily given to me as a respite alternative as opposed to any type of emergency. However, agencies forget to completely follow through to ensure resources can be used in the way they are thinking. The Relatives is an alternative to a teen running away and being on the street overnight, or if a teen feels unsafe at home. But they do not take a behavior issue child a parent needs an emergency break from, a child who is not dependent in self-care and requires medications or as an emergency placement home because a parent becomes very ill and has no one to babysit, not as an alternate respite location. In fact, if your child takes medication, it’s unlikely they could go at all as they are searched before given access and having only 10 or fewer beds, often they are at capacity. It’s a resource, but not an appropriate useable one to me. For those that it is appropriate, The Relatives is a wonderful, highly recommended place.

It often becomes legit workload to even go through the lengthy application processes. That is for multiple reasons. The major one is the guidelines to qualify often penalize families who have uncontrollable medical/mental limitation. Sort of like offering a family without a car, a bike for every member, without verifying first all those members have legs.

6 years ago there was a month in which medical bills wiped my funds out so bad we ran out of food. I had a medical emergency and my eyes were bleeding, literally. My eye pressure was in the 40s (which is very dangerous). Being an eye emergency I had to go to the ophthalmologist office and pay the ER level co-pay. $250 at the time. It was a near miracle I had funds that day. However, they were supposed to be for groceries. I saved my eyesight but then had no food for the children and I. After going to the community center and sitting around, spending hours qualifying for a food bank voucher and then waiting for an appointment to pick up food at a food bank location, 4 1/2 hours had passed. My disability makes sitting excessively painful. By the time I got to the food bank, the options were limited, and 80% of what they gave me were items my family was allergic too. When I asked if there were alternatives they said no. Additionally, where I live, the county limits you to one food bank visit per month to prevent abuse. It doesn’t matter that the food need will not resolve in a month. The food allotment received was described to be a 7 day supply, and having been to those food banks, it is nowhere near to that. Powdered milk, peanut butter, 6 eggs, bread (all pantry leftovers from stores), can goods and boxed items. No fresh fruits, vegetables or meat was available at my appointment slot. We are allergic to peanuts, milk, one child can’t have eggs, and I am allergic to soy.  Very little was useable food. A program, but not useable. To be clear, the Charlotte Food Banks are very well organized, generally compassionate and an important part of caring for the needy. I was and continue to be thankful for the 20% I got back then. 20% was 20 more than I had. My struggle then was there were no structured alternatives for people who were allergic or diabetic. None in my home are diabetic, but having a medical background, I keep it in mind.

Fast forward to present day, when I donate food, I donate top quality items, plenty of sugar-free items and diabetic supportive foods, lots of clear flavored water, wipes and feminine products. I include items that do not need electricity to prepare.  Giving 10 boxes of crappy mac-n-cheese does no good if I have no milk or butter and certainly if I’ve got no power to run a stove. Keeping all those real-life factors in mind, I donate truly useable and appropriate foods. I drop off fresh meat, vegetables, and fruits just as food banks open to ensure those make it directly to families.

The disabled homes in America, especially medically fragile ones, truly need many champions in Government and local agencies to take up their unique needs. Although each of our households may vary in challenges, a few themes are more constant. Hands-on-deck being top of the list. But there is a need for programs to flex and bend to needs of our specific homes and as of today, few exist.

Starting with those dreaded lists I mentioned of local agency programs is still applicable. Why not utilize them if one might help. The rub comes in how those are restricted in utilization. That gap could be filled with some awareness by agency heads. Regardless, it is the most responsible step to use what is available for sure. Beyond that, ground up thinking needs to happen with more customizable designs capable of meeting the needs. That takes a ton of shared information. Information not being collected and shared in effective ways yet.

Mother sitting bedside of a sick child in emergency room.
Worrying over a fragile family member can drain an entire household.

If you happen to be the friend or family member curious about what to do. Little things mean a lot. Think about the energy saving tasks you can spare that family in need. Often I value my energy resource more than anything else. The drain and exhaustion of dealing with medically fragile children is very intense. Most weeks we are lucky to have less than 3-4 medical appointments, long ones at that and often for both boys. So although you may not be able to do a fundraiser and raise 10K for your family in need (which is a great idea too, no joke), you can more easily offer your non-disabled body and untapped energy to do relief work. I cherish those things deeply. It’s funny, that some of my only Mom and sons pictures I get are the ones nurses take when my boys are in the hospital and catch those Mommy moments of pure exhaustion. So I mean it when I say, any energy sparing and saving resources I can get…I love and consider sacred.


12 Great Ways to Help Disabled Homes

(Listings are in random order, some are local to the Greater Charlotte Area. We are not currently sponsored by any.) 

  1. Meal preparation 

2. Cleaning service

3. Pet care assistance

Rover Pet Care

4. Time bank sharing (disabled homes sharing chores-cooking for each other for example)

5. Respite hours (go to that disabled home and watch over things for the caregiver to take a nap)

6. Home Health assistance or companion care for light work

7. Grocery shopping pick-up or offer to do the carry labor for them

8. Purchase family Amazon Prime

9. InstaCart gift cards  **Update 4/27/18** (No longer recommended for use as gift aid. Recipient must still provide personal credit/debit card for funds/hold. InstaCart operates as the 3rd party rather direct retailer.)

9. Alternative: Gift Card Mall -Groceries & Pharmacy

10. Send uplifting greeting cards by mail or email

11. Offer to be extra hands-on-deck for a 2-hour block

12. In-home entertainment, such as a streaming service.

If you are a disabled family, leave a reply on what your dream service would be. What need would be that “oh my goodness, it would be so nice if…”. Or if you are not comfortable with that, use the contact form page. I will come back and list out some of the responses later. I am so curious what other homes might think of. Nothing would make me happier than to go armed with information to the agencies I have relationships with and say “hey, we can fix this”. On that note, I hope readers will flood this site with needs, leads, tips, verifiable agencies and all those tidbits. And my fellow families gifted these resources or offered time assistance, be fair and mindful. I certainly am not going to ask someone there to help me one day a month to clean my toilets. Use some wisdom and be workable with a volunteer. Likewise, volunteers should be willing to do some tasks that are not always glamorous. Taking out the trash is not the most fun, but helpful to a disabled aching body.

If you are a professional agency that thinks you might be a good fit for disabled homes. Feel free to use the contact form and leave your company details. I will be sure to follow up. This goal will take some time. Knowing which pediatricians in your town truly understand sensory integration while evaluating your child’s sinus infection has new meaning. Or utilizing that family restaurant that caters to autistic children and cognitive disabilities, provide an enjoyable outing, usually out of reach. Whoever can meet those unique household handicaps are priceless.

Thanks for reading and remember to reach out to families in need. If you are a family wanting to be connected with others similar to yourself, feel free to register your family here. Your information is never shared with 3rd parties without approval and personal home addresses are not required.


-Author Pamela JuersAuthor - Image

(Forgive sloppy typo fest. Midnite blogging is not recommended)

 


Random but useful things worth checking out:

Family First   Mental Health America  Council for Children’s Rights

Access Wireless – Free Cell Service (lifeline) Disabled/Medicaid/EBT Qualified

Great School – Education/Childhood Dev

Amazon Flex-Disabled Employment Program

Hello Fresh – Prepped Meals to Cook

Instacart – Your Online Grocery Store

The Arc -Disability Community Support

Brain Injury – Adaptive Tech


 

 

 

 

 

 

 

 

 

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