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How to Overcome – A Patient Perspective

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Whether newly diagnosed or in the trenches for years, being a patient of an illness or disability can feel daunting. Slowly or quickly, you pick up the signs of losing control. Each human wants ultimate control of their own life. And losing it demoralizes you.

There are some days I don’t like who I am. I feel my disease. I feel like the independence I fought so hard to get slipping away. My disease has and will continue to progress over time if I cannot get it under control.

When I told someone important to me about my diagnosis, this person immediately decided for me that I needed to move home. That I wasn’t going to be able to come out of this and proper care will only be available there. This made no sense to me. And I refuse to oblige that request.

I’ve been looking at my life but avoiding the truth at times. Sometimes I don’t want to admit that my body is sick. But I feel everyday something from my illness. You can react to your diagnosis logically or emotionally. And dictate how your life will go from there.

As Albert Einstein is famously quoted, the definition of insanity is doing the same thing over and over again expecting a different result. So if you do nothing to fix yourself, you, by Einstein’s definition, are insane.

Let’s take a look of what you can do to avoid this insanity and come out of the rut or loss of control you may face.

Logically, lay out your life. Work, hobbies, meetings, obligations, etc. Choose one or two items that can be removed. If you feel like everything in your life is important, see where you can take a short sabbatical and potentially return without much issue. If you are on the board of an organization, stepping down and letting an interim person partake is usually easier especially if it’s discreetly understood why. There is no need to announce your difficulties unless you want to publicly. A common thought is if you step down you are losing control. But if you have too many things to juggle and you are a sloppy juggler, it’s not very pleasant to watch. Become a master of the things most important to you in life. Instead of juggling 8 things, master the 5 most important or even the 3 most important. A jack of all trades is a master of none.

Leverage what you can to others. I leveraged out the cleaning of my home to a professional. Every 2 weeks I come home to a spotless house and it is worth what I pay ($50). What usually takes me half a day or more to do and a lot of build up energy and mental interest wise is now done within 2 hours while I’m not home and I never lift a finger. If you have children or a partner in the home, work as a team and talk about your needs and assistance from them. Or if you have a great friend or neighbor, see if they can work with you on a leverage situation you need, ie. grocery shopping, pet walking. Use resources like auto bill pay through your bank, or auto refills with delivery from your pharmacy so you won’t forget.

Consider your eating habits. I’m not saying go cold turkey into veganism or other extreme lifestyle change, but see where you can change one small thing. An example can be reducing the number of times you eat out and cook one extra meal or two at home. Or instead of buying processed foods, create your own at home and meal plan with tupperware containers. Or if you avoid breakfast or skip meals, bring food to work with you in a small bag. Make easy homemade trail mix or tote around a banana. Just something to start your day. My biggest issue is water consumption. In the past, I’ve marked up a bottle or gallon jug and made a competition with myself to hit each line and time mark. Each time mark had a positive affirmation on it. Below is the example I created my jug from.

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Consider adding mediation in your life. Even 5 minutes of being mindful is precious. It will clear your mind even when things creep into your mediation. There are lots of YouTube videos that will guide you through mediation. Over time build your mediation length and connect to the present. Light exercise and stretching will also invigorate the body and mind. Even just a few movements can awaken your body.

Just add what you can, subtract what takes away for a quality life, and keep moving forward one step at a time.

Love and Compassion,

Rebecca

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Waking Up Everyday

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As a patient myself and a caregiver for an ailing geriatric dog, there are someday you wish you could sleep forever. There is depression and anxiety waking up wondering how your day will be a struggle. Or a quick mini prayer to make the day a better one than yesterday.

Living with pain and mental fatigue corrupts your ability to think positive. Happiness is replaced by strife. The mole hill has errupted into a mountain.

Sleep, my favorite past time, performs many good things for you. Your body can relax and heal, but when sleeps becomes interrupted the effects over time can destroy your health.

So what can you do holistically to improve sleep? There are lots of suggestions and here are a few that I’ve received positive feedback from.

  • Use of melatonin lotions
  • Removing televisions from the bedroom
  • Using blackout blinds
  • Elimination of coffee
  • Reduce naps or perform cat naps
  • Lavendar essential oils on certain points
  • Meditation to wind down the mind
  • Preparing for your day the night before
  • Pillow support

A suggestion list from Web MD.

Now, the goal is to have uninterrupted sleep. If you cannot avoid it, then talk to a sleep specialist to discover tricks and tips. You might even have a medical condition and need medical intervention. For those who care for someone that interrupts your slumber, sleep when they sleep, or bring in help so you can take an appropriate nap to recover. There is no shame to ask for a time out.

Many hospitals now offer sleep studies and a patient can be referred for a sleep observation. The observation will track your breathing patterns, brain wave frequency and visual observance of your body position.

There is the resource from Sleep Foundation that can offer insights to common and uncommon sleep disorders.

Love and compassion… and blissful rest,

Rebecca

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Adapting to Change in the Home

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One of the biggest things I remember after my father’s stroke was how the house that I grew up in started to change. Inside and outside changed a lot.

We added a stair lift, widened all doorways on the 1st floor to 36″ wide, poured a new walkway ramp to the front door, installed a wider front door, remodeled an entire bathroom for roll-in capabilities, and installed hand bars in most bathrooms and his bedroom. We considered even building an addition that would be a first floor master bedroom.

The tens of thousands of dollars my parents spent to modify their home is not uncommon. I found an interesting blog from HomeAdvisor.com talking about home remodeling for disability and aging. The said that there are grants and federal programs, non-profits etc. that do offer assistance. The VA and Labor Department offer such options.

I found another help blog on expertise.com that discusses the various programs, average costs, and tips on how to do a proper home remodel for a disabled person. The great thing about this page, it discusses room by room what you need to consider and options for an effective remodel.

I hope these tips help you and please feel free to share your tips too!

Love and Compassion,

Rebecca

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Time to think of Summer

As we come to the final months of school, we hear chatter and clamoring for Summer programs. But when you have a special needs child or adult, you may think options are limited.

Did you know that there are respite summer camps for children and adults? Respite means short term care at another facility. Usually respite is associated with assisted living care, but these respite camps are traditional camp opportunities that address the unique needs of their campers.

Last year, my father participated at Moss Rehab’s Camp Independence.  This sleep-away camp nestled in Montgomery County, Pennsylvania lasts for one week in the summer. My father, initially, acted as an unwilling participant. For months leading up to camp, he argued and threw mini tantrums about going to camp. It would be the first time he flew solo after the stroke. Also, he reflected heavily on horrible childhood camp experiences. He thought only mentally handicapped participants came, but the camp aims for adults with all levels of handicap needs. But my father’s tune changed when he finally arrived and obsessed on one thing that he thought was impossible to do since the stroke… go swimming!

The great thing about his camp was the ability to receive individualized care and 24-hour medical staff onsite. Cost for 1 week was $600, but scholarships were available for those who qualified. Campers enjoy the opportunity to do traditional camp activities – fishing, campfires, arts and crafts, play games, put on a play, swim, and much more. There are other camps out there and hopefully this blog post will get you started if you are in need of a camp.

Here is a list of 25 Summer Camps as provided by friendshipcircle.org. This post is several years old, so there are camps that may not be in existence anymore. I’ve also have a guide from the Easter Seals foundation. Click your state and use the local branch resources to find the camp closest to you. There is also a search with the American Camp Association.

Most of these camps fill up quickly, so get there early. If you are looking for a great job and rewarding opportunity, sign up and become a counselor. The best job I ever had was being a camp counselor. To read more about the benefits of respite camps, here is an article on the American Camp Association site.

So enjoy the sun, live life, and try something new.

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Love and Compassion,

Rebecca

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Tools of the Trade

Durable medical equipment (DME) is a silent cost of care. People accept the fact they need DME and it eventually becomes part of the normal day to day care.

What is DME? From the Blue Cross Blue Shield of North Carolina corporate medical policy dated 9/2016, DME is any equipment that provides therapeutic benefits to a patient in need because of certain medical conditions or illnesses. See the full detail in the picture below.

DME

Some common DME things I see are wheelchairs, oxygen, beds, walkers/canes, etc. You can rent or buy the equipment. It can be new or used.

Each insurance policy is different to please review your coverage with your provider. What I will provide is a way to keep costs down. And in return, and hope, that when uHelpCare.com formally launches, we will offer cost saving DME options.

1. Contact your local hospice, Goodwill, church/place of worship, ALFs and donation centers

When you are no longer in need of DME items, it is sometimes is hard to get rid of it. Somethings seem too taboo to give as a hand-me-down. Example, a bedside toilet chair. We bought a new one for my father and he used maybe a handful or two times. Perfect condition and sterilized after every use. It sits in the corner of my father’s bedroom at our home. He doesn’t live at home anymore, he lives at an Assisted Living Facility (ALF). A toilet chair can start at $25 and go much higher. Why pay for new when I can guarantee you that there is one within a mile or two of you collecting dust. Call the places you might find DME or businesses well connected to the community at large in a non-profit capacity. On a Saturday, drive around to your local garage sales and if you see one or two DME things, you can assume there may be more inside. Just ask.

2. Use online resources

I found this company by Googling used DME. The company is called theDMElist.com. You can sell or find DME that fits your exact needs. It’s pretty much what I want uHelpCare.com to offer but the site seems like there isn’t much activity. I tried a simple search within 100 miles of my zip code in Florida and nothing came up.  For my parent’s zip code in Pennsylvania, 33 items came up. There were crutches, wheelchairs, beds, bi-pap machine and that’s just a few examples.

A side note, if you use Craigslist, social media Garage Sale group, or any online resource where it’s a peer to peer transaction, please use safety precaution to keep you safe. Meet at a public place. Many municipalities offer parking spots at their local police stations or fire departments to do exchanges. These spots are usually monitored by camera and there is always someone on premise. If it’s large DME items like a bed that is being taken from someone’s home or needs to be tested for function, please bring an able body companion with you and let a friend know where you are going.

3. Work with your doctors and hospitals

Most hospitals have a case management social worker or advocate that will meet with you if you are being discharged and need DME. They are a valuable resource that can direct you where and who to contact. Depending on their workload, they may be able to call on your behalf but you will need to set up appointments with providers. Some hospitals may have a charitable foundation that collects items or can assist with funds.

4. Check the medicare.gov site

There is a search engine on the Medicare.gov site that allows you to input your zip code and will list all of the DME providers in your area. The interesting this about medicare is they have a bidding process for DME. They use this process to ensure fair and affordable costs from quality providers while preventing medicare fraud. Same thing is available under Medicaid.

Also, if you are interested in selling or giving up your DME, here is a blog from especialneeds.com regarding your options.

Love and Compassion,

Rebecca

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Whose disease is it anyway?

So in a previous blog, I hinted towards a looming doctors appointment for myself. Well today was that day. I fumbled with my phone and recorded myself as I spoke about my inner thoughts heading to the appointment. I found it hard to vocalize what I wanted when I played back the video. I immediately erased it. I didn’t want to put out a video of me being a bumbling, insecure, unsure person. But that is who I was walking into that appointment. Things rambled in my head. The night before, I was losing my patience with my geriatric dog and said some not so nice things.

I said something in that video that made me heavily reflect. I said this is a moment that will change my life for the positive or negative. Then said like my dad’s stroke changed everything for him and me. Like my friends all having kids, that moment when a child is brought into your life. Everyone has moments every single day. A choice you make on the simplest things effects everything else in events before and after that event. From eating your breakfast to letting someone into traffic during rush hour. That one moment created a domino effect for everyone. That’s amazing energy and mind blowing when you reflect. Think about one thing you did today – say breakfast – and trace back everything that could have possibly gone into that meal. You had 2 pieces of toast with jam. Where did you buy it from, who was your check out person, what kind of day were they having? Who stocked it on the shelf, did he greet the bakery delivery driver? The farmer, the miller, the fields…

Prior to my appointment with the rheumatologists, we had our suspicions. I researched lightly the different facts of those suspicions. I googled the meaning of my lab results that I had access through with a patient portal. At points, hypochondria crept into my mind with asking myself – do I have this symptom? It’s not fun waiting to have a direct conversation with the person you would hope would have the answers.

The appointment itself was perplexing to say the least. My rheumatologist and I went over my results but I didn’t quite fit a full diagnosis. I cover a spectrum of autoimmune diseases of which the one closest associate to my symptoms is lupus. I don’t quite fit the box of lupus blood work wise but my symptoms are closest in character to it.

So now I have an answer but I don’t have an answer. My doctor basically said “all we can do at this point is treat the symptoms until we see a change in your physical response or blood work.” Now this phrasing is a dangerous one that can lead to throwing darts and needless medication at a moving target. I’m normally a drug free person as much as I can. I tough it out until I’m absolutely incapacitated. So this approach had me do an “I Love Lucy” face gag of “ewwwww.” I gritted my teeth like I was watching a horrible thing happening. Helpless completely knowing it just didn’t seem right.

I left the appointment with a prescription of Plaquenil. A traditional protocol treatment for lupus. I also made the decision to eliminate processed foods from my diet and get back to a vegan diet. Most likely having to do a juice cleanse first and then build up my food consumption. Studies have shown, and Hippocrates, the father of modern medicine stated, “let food be thy medicine and medicine be thy food.” So eliminating foods that cause inflammation and increase foods that reduce inflammation is key.

As I’m typing this, I’m about to take my first dosage. I have been dragging butt to do this moment but it attests to my disdain of being a pharma rat. I do believe that food and other natural things can heal me, but for now, there needs to be a full on assault on this. I’ve assumed that we’ve caught it early enough because the doctor gave an analogy of a me being a sink faucet that is lightly dripping. Fix that drip now or when the faucet fails, water is trickling out and my disease causes permanent damage.

So when looking at these lemons in my hand, I have to think of what recipe I want to use to make lemonade. Do I want to go all natural with organic local raw honey and pure alkaline water? Or do I want to use splenda or other sweeteners and good ol’ tap water that’s been through a water filter?

You may think the first option, duh! But can I always afford to buy those items? At $5-10 a gallon, alkaline water is the most expensive water I’ve ever seen. The cost of health care is the same.  You want the highest form of care and treatment available. Throw everything at it. But what is truly viable at this moment? Luckily my medication is affordable in the generic and I have wonderful insurance. This may not be the situation in the coming months. You never know. But I want to do holistic treatment and diet modification. The cost of living on a juice or vegan unprocessed diet is more expensive because of the cost of raw or natural foods. I also want to visit alternative healing practitioners. They aren’t covered by insurance.

Taking health into your hands is what one has to do. It looks like most drug manufacturers have some sort of program to make their drug more affordable. I’ve not looked into it yet, but if I were placed on Humira or something more expensive, I will research those avenues out.

One thing I also have to do is de-stress. I am going non-stop between work, school, another business, ambition for a non-profit, take care of my aging dog, life chores, and oh yeah, the joys of dating in your 30’s. That should be another blog… But getting back on topic, I need to choose what ends and what stays or leverage everything else. One business will be most likely leveraged completely to a referral base. The non-profit startup is my passion, but my work has the insurance. This is a struggle with my health the way it is. Luckily, I have great mentors, friends and colleagues that  can help me find focus and prioritize what I need to choose. I may end up broke, I may end up uninsured and with no medication, but if I do the other holistic treatments and I respond, who needs the meds anyways?

Keep fighting and find your way!

Love and Compassion,

Rebecca

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Leverage – The facts of life

 

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When thrown into the situation of being a caregiver, you start to plan and make lists. You start asking questions. You are herding cats.

If you are raising a child, special needs or not, you only trust who you know or get recommendations from them. You ask around for babysitters, daycare providers, pre-school programs, mommy-and-me groups, etc. You most likely hit up care.com if you are an active hunter. Leveraging time is key. So you try to figure out everyone’s hectic schedule and somehow it always works out.

In any care situation, leverage what you can. If there is an emergency, find a friend that can coordinate a meal being brought over. Or carpool your kids. Check out your local dry-cleaners if they do pick up service and traditional laundry service. Life has become so mobile and leveraged, there is a delivery service quickly being offered for most mundane life event – grocery shopping, pet care, transportation, same day service. If it is not here yet, it will be. Don’t try to leverage everything out if you are strapped for cash. Try a service that, if used, would open up the most time and stress on your list. As an enticement, you can find a code for free delivery on first order or discount on service with most companies. The expansion of Amazon with prime services has changed the way many consumers shop. And most likely if you are reading this blog, you have ordered something from them.

Asking leverage within your family unit can be extremely tricky. You need to assess every person and consider the dynamics of your relationship and the relationship they have with the person or thing (ie. pets) needing care. You wouldn’t want to place your teenage child that is absorbed wholly into video games or phone apps to care for a friend’s toddler that has a vigor for life. You wouldn’t use your husband to watch over your great aunt if she is needing toileting assistance. He just may not feel comfortable wiping a woman unrelated to him by blood. And especially if your great aunt has never liked him from the start of your relationship. In both situations, not only do the caregivers look mismatched, if something happens, you get earfuls on both ends.

We have a mismatch in my family. I won’t say who, but if everyone else on the field is injured or benched, the last string quarterback will get to play. Now this person wants to help when they can but they really don’t want to. Their personality is mismatched to my dad. This person has been developed into a tag team partner. They are called in for short companion needs which for them will be just having my father sit in his recliner or bed and this person is there if my dad needs to be toileted or fed. Even feeding is pushing it. This person will stay in the room but do their own thing – read, play a game on their phone, or occupy their time in another way. Sometimes they will watch tv with Dad and if the topic strikes them both, we may have communication. We know that this person is extremely stressed in this caregiving situation. But they are a loyal and dependable care partner. So we only call in this last string quarterback if it’s only necessary.

If someone volunteers to help, take it. If they are a person that will not work well with your caregiving need, they can do some caregiving for you. Have them cook a meal, or do a load of laundry, or help clean a room or two. If they are a neighbor, ask them to cut the grass, play with your dog, watch your kids, or help string up the Christmas lights. I remember when I was a kid, a few times I would go to my next door neighbors house if my parents were going to be gone for several hours and I was coming home to an empty house. When there, I had a snack usually, talked to my neighbor, and she would show me her crafting skills. I was bored most of the time, but enjoyed her company.

Considering I was born in 1983, how much does this good neighbor attitude exist today? Many people I talk to when selling their home know only 1 or 2 of their neighbors enough to know some things about them. Most homeowners give vague descriptions and observations. Neighborly doesn’t really exist much anymore. And I’m just as guilty for this behavior. Maybe before anything happens, walk across the yard or street and say hello one day. Pick a neutral topic and just have a nice chat. I only got to know my neighbors when I sold my house. I would stand outside during showings with my dog in toe. My neighbors, being nosy for the house price and status, would come out and talk. Or some would show up at the open houses. I made enough connections through these opportunities to relay this to the buyers. Buyers always ask. Since I’m a realtor, I have to keep to fair housing things so I never bring up anything that violates that law. I talk about my neighbors who own versus rent, their pets, best holiday decor, and how long they’ve been in the neighborhood.

But I digress…

If you don’t like your neighbors, start with a church friend, or co-worker. Maybe join a support group and see if there are people who can “buddy up” with caregiving time. Like playdates. There are some locations like churches or community centers that offer care time. So you can leave your loved one there for a few hours and do things for yourself.

The thing to remember is, there are people who can and want to help. Just figure out what suits you and your loved one best and take every opportunity if there is a benefit. There are things called respite services. Respite is for the caregiver. It means to have a reprieve from care. Here is a locator search to help find leverage. It’s not the greatest search engine, but it can be a start.

Love and Compassion,

Rebecca

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Try and Try and Try again.

Today, my mother sent me a video of my father at his rehab appointment. For the purposes of my mother’s request for privacy, I cannot go into this video’s content, but it shows the work ethic of a man who is not giving up in his recovery.

As mentioned in the “About Me” section, my father is 5 years out from a massive double stroke and craniectomy/cranioplasty (a procedure repeated twice). Whether religious or not, there is a major blessing that God, or whomever high, provided to my father. My father has never looked at himself, ever, as someone who is disabled.

Some more background about my Dad…

My father grew up 85-90% deaf. He had an illness that robbed him of hearing when he was a toddler. No one knew till he was in the 2nd or 3rd grade that he was deaf. The nuns at the catholic school he attended noticed my dad’s inability to pay attention, struggling grade performance and continual “behavior” issues. Back then in the 50’s, the resources for my father were limited. My grandmother, his mother, refused to put him into a special school. She is still to this day a hard-working, gritty, single mom of 3 children, and a spit-fire of a woman. At the time, the school administrators thought my dad’s apparent disability would render him unintelligent and she should consider institutionalizing him. She disagreed and raised cane.

My dad was an athlete, had decent grades, and graduated from high school and an engineering program. He help build and design many of the roads, bridges and infrastructure in the Philadelphia area. My father’s biggest pet peeve growing up was going to class on the weekend. Other kids could play on the weekends, but he rode the train from his home and walked to the Philadelphia School for the Deaf. To function in a hearing world, the school offered the deaf a way to communicate and effectively learn. But he didn’t learn sign language. He learned to read lips.

He was impressed by his teacher. She was a non-signing deaf woman who had a very successful career and functioned flawlessly in a hearing world. She never saw the need to sign. The world was speaking to her and she spoke back.

During the Vietnam war, my dad was drafted but due to his hearing, was refused at the physical. Some days, my dad wishes he was able to fight because several of his friends never came home. And for those who did, many of them have hearing issues now like him.

When his stroke happened, insurance covered only so many occupational, physical and speech therapy sessions. As long as he was making progression, insurance paid. Then a few years ago, therapy stopped. A tribunal of specialists determined he wasn’t progressing any further. So it was left to the family to continue treatment at home. And we did our best.

My father is an avid cyclist. And a few months prior to his stroke, he had purchased his dream racing bike that he planned to make the 1100 mile trek to my home in Florida on. Knowing his bike sits in the garage, his hope is still there to ride.

For me, when my dad was hooked up to life support after his stroke, I had to reflect on his end of life wishes we had discussed at the dinner table only a year or so prior. He never wanted to be a burden on the family and if he couldn’t have his regular life and ride his beloved bicycle or ski the slopes of Wyoming, I needed to be able to let him go. At the time of life support, he had come in and out of consciousness and was able to communicate in writing full cognitive sentences that flowed and made sense. So we made the decision that he was still there and he was able to fight.

And even though its been 5 years, he still continues to fight. We’ve been blessed with the ability to research rehabilitation specialists and programs across America. One of the top in the country is Moss Rehab in North Philadelphia. They have taken my dad into their stroke study and have worked with him for almost 2 years. They do things there that no one else does. They believe in you when insurance doesn’t.

I’ve never met the team at Moss, but my mother cannot stop complimenting them and sending progress videos to myself and family that aren’t close by. Tears stream down my face as I see my dad try and try and try. At his 50th High School Reunion this past October, I was his date for the Homecoming Game. As I wheeled him onto the field and perched him at the 50 yard line marquee he shouted, “I’m still alive!”

When I want to give up, all I need to do is think of my dad. He would never let me give up and I will never let him give up. He’s my motivation for this blog, this journey to help others, and to never let anyone label you. So if you are facing the situation of insurance cutting coverage, doctors giving up, and the feeling of the world is against you, DON’T GIVE UP. Ask questions, research the illness or situation you are in. Medical studies cover health costs and transportation. Apply! You never know what things you can do, until you can believe in yourself and have a team behind you that believes in you too.

Love and Compassion,

Rebecca

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Taking a step back

Yesterday, I was speaking to a friend about the needs of the caregiving community and my new business venture to assist this community, UHelpCare.com. Little did I realize as I spoke to her, I became utterly enthralled and infuriated at the endless list of needs that families have with care.

Living in the United States, our medicaid and medicare system is at the core of most debates every election cycle. The cost of medical care in general is a growing problem. I benefited from the “Obamacare” system with obtaining affordable health insurance and ability to afford a much needed surgery after being uninsured for over 6 years. After that surgery, I had one person in my life that could take care of me the 2-3 weeks in recovery. I am forever indebted to him. He was my ex-husband. The surgery occurred only a few weeks after our divorce was finalized. What an awkward and emotional situation! If I didn’t have him, who could have taken care of me? Who would have gotten groceries, walked my dogs, helped me shower, changed my bandages or other nurse-like duties? To be honest, no one. The option of in-home nursing care wasn’t offered to me. And I couldn’t afford to hire one even if it was. I don’t even know if it was covered by my insurance because I never thought to ask.

I had a tender-hearted man do everything he could for me, even though I had ripped apart his entire life just a few months prior. And not everyone has someone in their life like him. It costs money. And if you are in a persistent care state, it costs a lot of money. When speaking to my friend, I mentioned to her the cost of buying a used wheelchair accessible van. It was the cost of a Mercedes. Why was it the cost of a luxury car when there was nothing luxurious about it. Then I remembered talking to someone about the cost of private wheelchair accessible transportation. Just for this person to go to the grocery store, they said they usually had to book the van weeks in advance and it’s cost is dramatically more than a taxi.

I pulled up the site of one of my local wheelchair accessible transport providers and did some light research. They state that they do not accept medicare and it’s not reimbursable. But they have resources to help off set costs. There is also a private pay option which is based on mileage. And they are linked with public transit authorities. Most transit authorities I’ve experienced do offer assistance for those who cannot access their traditional transit options. There are still many restrictions including time, service, and require those who cannot do basic self care bring with them a Personal Care Assistant. The fare seems reasonable but there is a service limit area.

Many things like these keep me thinking of what can I do, what services are being under-utilitized and who is being under-served? These are the building blocks that my entrepreneurial mind feeds upon.  I want to find a way where no one has to feel a financial burden because they are “different.”

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Love and Compassion,

Rebecca

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Support… in Groups

Whether you are the caregiver or needing care, you need a place to be supported. There is a desire in every human to be heard and understood. A place of empathy and sympathy.

As life becomes full of scheduled events and appointments, this crucial time of mental release is missed. The mental health of caregivers is one of the largest factors of potential burn out. In our family, my mother and sister were my father’s primary caregivers and he was in 24-hour care demand. Both of them worked full time jobs, or in my sister’s case school for several years.

My father would have leg cramps, incontinence, and other pains in the middle of the night and yell out to anyone in the house for them to wake up and get him medication or clean him up. If you have ever had a child, you would understand their life – sleep deprivation and shortened patience. You would also be more likely to yell, cry, and justify not talking to anyone because it’s your issue. And when you reach out to your immediate core friends or confidants, they may not have enough soothing words or antidotes to alleviate your stress.

If you are in any type of care situation and need to vent, we can offer several ways you can find help. We understand that you may not want to open up at a support group. And that is okay. Just the fact you are involved in a group may bring you peace. Listening and internalizing other participant’s stories may be the preferred way for you to bolster confidence to eventually open up. Or you may be that person who is open and able to engage.

Consider what format you can be comfortable in. You may be fine with anonymity with just online support chat boards. You type your concern or question and check back with commentary from your community. Some may be real time response, some can be a fishing post, meaning it’s thrown out there and sits at the surface while others respond over time, nibbling at the subject.

You may be more comfortable in a physical location, whether at a church or hospital. Sitting in a room, chairs in a circle, and some format of a meeting is followed. You still have the ability for anonymity with only giving your first name. But this time you have more to the story. You can read the body language of others. What is spoken and unspoken. You can sense the energy and after the meeting approach someone, if desired and privately talk to them.

Our website, UHelpCare.com, is looking to bridge the two together. We see positives to both types, but time and situations can leave you unable to be in two places at once. And if you are caregiving and on your own, the ability to find care to replace you while at a support group may not be financially feasible. We are looking to develop an online support group forum where there are “rooms” you can join and attend video group chats and have peer level moderation, no professionals, just chat monitors who can protect the group. We are also looking to develop a discussion board, post a topic and let the community respond.

As we grow in our community, we need your feedback and give us your ideas on how we can fit your needs.

In the meantime, here is a great site for some reflection and help in choosing a support group. This website targets those who live in British Columbia, Canada, but the checklist and follow up questions are spot on recommendations.

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Love and Compassion,

Rebecca

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