National Family Caregivers Month: Paying for The Caregiver

Welcome to National Family Caregivers Month. What is a caregiver? Basically, if you're someone with special needs necessary for living a normal life, you will need someone to help you meet those needs. That is a caregiver (also called a carer in some parts of the world).

While our blog focuses on disabilities, particularly mobility deficiencies, most of it is written by a caregiver with input by the one cared for (for the perspective of the person being cared for, you can check out Tim's series of posts called Cerebral Palsy Stories).

During this month, we'll be posting some articles about caregiving, what it is, how to do it, and how to pay for it. Our focus will be on persons needing help due to mobility issues.

Over the last month, we've covered what caregivers do, how caregivers need to put a little time aside to take care of themselves, and how to get a job as a caregiver. We'll end this with some strategies about how to pay for it.

Let's face it, caregiving is expensive. Figure at a bare minimum at least four hours per day. At a minimum, $15 an hour. Times that by how many hours a caregiver is needed each day, each week, each month...and you start to see just how much this is going to cost. 

A lot, if not most, depend on a family member who will do it for free or at least cheaply. What that doesn't consider, though, it how much that family member must sacrifice in terms of time and money to get that job done...not to mention burn out, which can happen amazingly fast.

The solution, of course, is to get a professional caregiver or pay the family member a true wage, or a combination of both. This means you'll need to find a way to come up with that money.

Easiest, of course if you have a big hole burning in your wallet, is to just pay it out of your funds. There are very few people, abled or disabled, who can afford that however.

Another option, should you be able to take care of it before a disability sets in, is Long Term Care Insurance which you may be able to get through your employer or on your own through an insurance agent.

With this in place, you can get a daily stipend to pay for care should the beneficiary become disabled or even pay for assisted living  or nursing home care but, once you're disabled, you will find it very hard to get anyone to underwrite you for this insurance.

That leaves us to relying on government programs to help pay.

Here in the United States, the main program for helping pay for a caregiver is In Home Support Services (IHSS) which is administered by each state, usually through a local county's health or welfare department, and is funded by a combination of federal, state, and county monies.

In our home state of California, you apply for IHSS through your county's health department. A social worker will be dispatched to interview you to see if your special needs qualify for assistance. If so, you will be given a number of hours that you qualify for. A worker can be hired (which can be a family member) and they will be paid for the number of hours worked, up to the number you were granted. The pay is just a little above minimum wage.

In theory, it sounds easy but finding a good, qualified worker can be a challenge. Aides must go through a one day training and pass a background check. Some county offices maintain lists of qualified workers that you can contact, interview, and hire.

You are in control of the hiring process and no one else is going to do it for you, which is where the challenge can come in. Also, if the person you hire doesn't work out, you have to start all over again. As they say, good help can be hard to find.

Many here prefer to go the family member route and that family member can be paid the full rate, somewhat easing the burden for them. A family member who is assigned as the caregiver will receive full pay, just as if they're a professional hired outside of the family, and also must go through the training and background check.

We live in California but a majority of states allow you to do this. From what I could find Alabama, Arizona, Colorado, Delaware, Florida, Hawaii, Kentucky, Minnesota, Montana, New Hampshire, New Jersey, North Dakota, Oklahoma, Oregon, and Wisconsin also allow family members to be paid as caregivers. Check your state or county's health department to see if that would apply to you, too.

If not, every state has some sort of payment for in home care but it may be an outsider that is the one to do that.

Beyond the government help, there are some charities such as Easter Seals and March of Dimes that can help, especially those with little or no income.

I hope you find this month's posts informative and helpful. Should you find yourself in the role of a caregiver, know that you are not alone and help is available but you may need to do a little digging to find it.

Darryl Musick

Copyright 2021 - All Rights Reserved

National Family Caregivers Month: Taking Care of The Caregiver

Welcome to National Family Caregivers Month. What is a caregiver? Basically, if you're someone with special needs necessary for living a normal life, you will need someone to help you meet those needs. That is a caregiver (also called a carer in some parts of the world).

While our blog focuses on disabilities, particularly mobility deficiencies, most of it is written by a caregiver with input by the one cared for (for the perspective of the person being cared for, you can check out Tim's series of posts called Cerebral Palsy Stories).

During this month, we'll be posting some articles about caregiving, what it is, how to do it, and how to pay for it. Our focus will be on persons needing help due to mobility issues.

As we've noted before, caregiving is an all-consuming 24/7 affair. The temptation to give into that would be easy to fall into but if the caregiver has a problem, everybody has problems.

I often remind Tim he needs to be an active participant and help me out. If I fall, he falls. If I get hurt, it's likely he will to. If I'm sick or out of action, he suffers because he no longer has my help.

One thing I try to do is take care of myself and stay in shape so I'll be healthy enough and strong enough to help him for as long as possible.

I admit that I don't always have the healthiest of lifestyles. I like to eat. I like to eat foods that aren't considered healthy. I like a cold glass of beer, a sublime sip of wine, or even a nice cocktail at a friendly little dive bar and I'm paying for that lifestyle by being overweight and dealing with type 2 diabetes.

That, of course, has to change so I've been eating and drinking less, trying to be healthier when I do (usually just one big meal a day and another very light meal). I've also increased my exercise considerably.

I walk just about everyday. My quota is 15 miles a week and most weeks I exceed that by several miles. I've gotten it to be such a habit that many in my county now know me as "that walking guy from Ione."

Tim goes with me at least once a week and he's now developed a liking for hiking when we go on trips.

He also joins me for a weight training workout session twice a week.

While I'll never be mistaken for a bodybuilder, I have gotten noticeably healthier and stronger. I've lost over 40 pounds...and counting...my cholesterol has dropped 80 points, and my blood pressure is consistently normal now. Yes, part of that is due to medication but I'll take it.

It's also helped me mentally and shedding of stress is a big part of my lifestyle and philosophy these days. 

If I can stay healthy mentally and physically, I should be able to take care of Tim for some years to come and keep pushing the day where we'll have to rely on someone else back to the future.

If you are or become a caregiver, make sure you put time aside for yourself and keep yourself healthy.

Darryl Musick

Copyright 2021 - All Rights Reserved

National Family Caregivers Month: Nut and Bolts - How It Gets Done

Welcome to National Family Caregivers Month. What is a caregiver? Basically, if you're someone with special needs necessary for living a normal life, you will need someone to help you meet those needs. That is a caregiver (also called a carer in some parts of the world).

While our blog focuses on disabilities, particularly mobility deficiencies, most of it is written by a caregiver with input by the one cared for (for the perspective of the person being cared for, you can check out Tim's series of posts called Cerebral Palsy Stories).

During this month, we'll be posting some articles about caregiving, what it is, how to do it, and how to pay for it. Our focus will be on persons needing help due to mobility issues.

How, exactly, does this caring get done? What does it entail? 

I'll be relying a bit on Tim's posts for some of this explanation but here is a typical day.

7:30am (8:00am on weekends)- I open Tim's bedroom door, raise his curtains, and remove his CPAP machine (Tim has sleep apnea to go with his other disabilities). I give him ten minutes to "work up a feeling" as he puts it, the feeling to go to the bathroom.

7:40am - I transfer Tim from his bed to his commode chair. I position the commode chair near his bed, swing his legs over the side, and stand him up. He is able to support his weigh on his legs while I swing him to the chair. A quick lift gets him onto the seat.
(We use a Drive Commode wheelchair, which is almost an exact copy of the Aquatec Commode chair but about half the price. It works very well for us - Ed)

I wheel him into the bathroom, positioned over the toilet to do his business, then leave him there until he's finished (see Tim's post about answering the call of nature for more information).

When he's finished, I have to clean him up. Yeah, it's about as fun as you think it is.
(You'll probably want to have some disposable gloves, good toilet paper, and wipes on hand for this.- Ed)

I wash up then wheel him a couple of feet into the shower. Tim has a roll-in shower and a shower head on a hose to make things easier. I give him a shave and a shower (see Tim's post on taking a shower to see how it's done).

When shower's over, I dry him off, apply a little medicine to help prevent pressure sores (skin lesions on his behind that can develop from constantly sitting) and wheel him over to his room.

A little deodorant and then I get him dressed, including putting ankle foot orthotics on him (AFOs) to help position his ankles. These are commonly called braces.

Once he's dressed, I'll help him stand for four minutes, putting weight on his legs, for therapy. Then I'll transfer him over to his wheelchair, which has been charging overnight.

Once done, I'll give him his morning medication and send him over to his mom who will install his tray and he'll eat the breakfast I've prepared for him and watch TV. Tim's not a big breakfast eater so his meal consists of pieces of fresh fruit that he can feed himself.

Twice a week, at mid morning, Tim and I will do a workout together which includes weight training with resistance bands. Otherwise, he's done until lunch except for another bathroom break, mid-morning.
(We use Veick Resistance bands for our workout.-Ed)

Lunchtime is usually around 11:30-12 noon. I'll prepare a lunch, or maybe buy a sandwich at our local deli, and feed it to him. When that's done, I'll floss and brush his teeth and help him go to the bathroom.
(Tim's toothbrush is a Collis Curve which is very handy for brushing someone else's teeth. -Ed)

When that's done, I can eat my lunch and he'll be good for most of the afternoon except he may have to go to the bathroom again, take his midday pill, and want his water glass refilled.

Either my wife or I will prepare dinner for all of us or go out to eat. At home, I usually feed Tim dinner. When we go out, it's usually my wife. Either way, after dinner one of us brushes his teeth again and I help him go to the bathroom.

After we're done, I'll transfer him to a recliner where he can relax and watch TV until bedtime.

At bedtime, I'll transfer him back into his wheelchair, give him is nighttime medication, help him go to the bathroom, and put him in the bed. My wife will set him up with the CPAP machine and make sure he's covered.

That's the end of our day but we'll sleep with a monitor in case he needs something in the middle of the night. Most of the time, he doesn't but once in awhile something will come up.

Darryl Musick
Copyright 2021 - All Rights Reserved

National Family Caregivers Month: Time For a Break

Welcome to National Family Caregivers Month. What is a caregiver? Basically, if you're someone with special needs necessary for living a normal life, you will need someone to help you meet those needs. That is a caregiver (also called a carer in some parts of the world).

While our blog focuses on disabilities, particularly mobility deficiencies, most of it is written by a caregiver with input by the one cared for (for the perspective of the person being cared for, you can check out Tim's series of posts called Cerebral Palsy Stories).

During this month, we'll be posting some articles about caregiving, what it is, how to do it, and how to pay for it. Our focus will be on persons needing help due to mobility issues.

As we said in the last installment, being a caregiver...especially a family caregiver...can be a 24/7 occupation. From waking to bedtime, there is never a time when our son Tim can be assured to not need some help.

We don't really mind, this has been our reality...our normal...for over thirty years. We're used to it but we'd be lying if we said that it doesn't get grueling sometimes.

When that happens, we could really use a break.

Technically, a break for a caregiver is called a respite. Sometimes, you can even get a little money to help you take that break from the caree.

We're lucky in that we have two people working with Tim and my wife and I are partners in his care. When one is helping him, the other can rest.

When Tim was younger, and easier to lift and handle, we could get a family member to come over and give us a few hours off. Tuesdays used to be date night when my mom would come over to watch Tim while we'd go out to dinner.

Tim used to go to a special needs summer camp. Letty and I would use that time to have a getaway for ourselves but when he got older, he didn't really care to go to a camp that treated him as if he were still a child so that is no longer on the table.

These days, it's more of the little things we can do to get a break. I'll get up an hour before Tim and my wife so I can have that as some "me time," have a cup of coffee, catch up on the news, and relax before my day with him begins.

I'll take Tim for a walk so my wife can have some time to herself at home. Conversely, my wife will stay at home with him while I go for a walk by myself...an added benefit is that those walks do wonders for my physical and mental health.

For the most part, however, we work on getting along and liking our time together so we can all spend enjoyable time together.

If you do become a caregiver, either by choice or necessity, remember to get some respite time. It can be the difference in keeping your well being in top shape.

Darryl Musick
Copyright 2021 - All Rights Reserved

National Family Caregivers Month: So You Want to Be a Caregiver?

Welcome to National Family Caregivers Month. What is a caregiver? Basically, if you're someone with special needs necessary for living a normal life, you will need someone to help you meet those needs. That is a caregiver (also called a carer in some parts of the world).

While our blog focuses on disabilities, particularly mobility deficiencies, most of it is written by a caregiver with input by the one cared for (for the perspective of the person being cared for, you can check out Tim's series of posts called Cerebral Palsy Stories).

During this month, we'll be posting some articles about caregiving, what it is, how to do it, and how to pay for it. Our focus will be on persons needing help due to mobility issues.

Can you be a professional caregiver? You bet. It doesn't pay that much, usually starting at around minimum wage while some can command hourly rates up to $25, but it can be rewarding. 

Your duties can be wide ranging and varied...feeding, dressing, transferring, bathing, bathrooming (including wiping up afterward), cleaning, laundry, nurse, positioning, and sometimes transportation. You'll probably unofficially also become a companion, therapist, personal trainer, and more.

You must be ultra dependable and honest...calling in sick leaves a vulnerable person in an untenable position, possibly threatening life and health. Working in an official capacity, whether for an agency or via In-Home Support Services (IHSS) will require you to pass a background check. Too many vulnerable special needs people have been victimized by those hired to help them to skip this step.

That's why many prefer to have family help rather than professional...they can usually rely on family members better.

So what might your workday look like?

You would probably need to get your client out of bed and dressed. This would probably including transferring...physically picking them up and putting them in their wheelchair. If you are not strong enough, there are devices (lifts) you can use to do that.

Before that, you may need to take them to the toilet so they can eliminate their waste and be cleaned up afterward.

Next, of course, would come breakfast. You may need to administer medications. You might need to feed them if they don't have the ability to do that.

Brush their teeth and clean them up. At some point, you'll need to give them a shower. You will probably need to transfer them to a shower chair/commode. It's much easier if there is a roll-in shower you can use.

Male clients will need to be shaved.

Once they're up, fed, and cleaned, you might think you can relax a bit. Maybe but they'll also need to have their laundry done, house or room cleaned, maybe do the grocery shopping, help with mail, paying bills, help sitting up, doing dishes, setting up a tv or computer, etc.

Then there's lunch, more bathrooming, brushing teeth, cleaning.

Later, there's dinner, more bathrooming, brushing teeth, cleaning.

At the end of the day, there's one more transfer to bed after setting up in their sleeping clothes.

It really is a full-time, all-consuming job. On a professional basis, there would ideally be two or more aides so that this doesn't become a 24/7 lifestyle for you.

If it's a family member you're taking care of, it absolutely becomes a 24/7 lifestyle. That's where you have to be very creative to carve out a little time for yourself so you don't drive yourself crazy or to an early grave. Time away for family members is technically called "respite" and we'll cover that next time.

(Note: if you would like to get a job as a home health aide, find an agency in your area or get listed with your state's IHSS agency. Here's a link on how to do that in California, every state has their own way of doing it: www.cdss.ca.gov/inforesources/ihss/ihss-providers/orientation-process)

Darryl Musick

Copyright 2021 - All Rights Reserved

Caregiver Chronicles: The 5-Hour Rule

You've heard of the five-second rule?  Here's my story about the five-hour rule...

When you're on a long road trip, you try to plan and be efficient.  You might know that your car's range between gas fillups is 400 miles so you plan your refueling, bathrooming, and meals around those parameters. 

If everything goes as planned, your trip pretty much flies by and you're at your destination ready for action but if not...say you get a flat tire, get stuck in an unplanned traffic jam, bad weather, etc...you find yourself falling behind fast and sometimes it gets very hard to recover from.

Dealing with a person in a wheelchair who cannot take care of himself can be similar.

I tell people we live live 3 to 5 hours at a time.  What that means is that when we get Tim's needs taken care of, we're usually good for 3 to 5 hours of smooth sailing but at the end of that block of time, we have to start over for the next one.

For example, when he wakes up in the morning, we have to help him with his bathrooming needs. Then dress him and put him in his wheelchair. Then make his breakfast and feed him. Then give him his medication. Then brush his teeth and maybe a shave. 

Only then are we able to relax a little bit but a few hours later, it starts over again.  Tim needs to go to the bathroom.  He needs to eat. He needs to be cleaned up, and so on and so on.

If Tim is able to accomplish all of this (and at home, he usually is), no problem.  It's done, it's taken care of, and now we move on to the next 3-5 hour block.

If not, then things can start to derail. Usually it's a bathroom issue, especially if we're out somewhere. When it's time to go, we'll take him to the nearest facilities. He goes? No problem, we move on to feeding etc., but there are times he can't go and then the pressure starts to build.

We'll usually just try again a little later but if that doesn't work, then pain might set in.  On top of that, Tim's anxieties start to mount and he starts to fear that there will be big problems if we continue on our present path of plans. This worry and anxiety just complicates the ability to go even more and it's like a snowball rolling down a hill...getting bigger and badder all the way down.

Sometimes, we'll have plans with people and we'll have to cancel and get back to where he's comfortable and we can walk him back from the ledge to get back on track. It's something we're working on to make better...and it is getting better...as we all continually deal with the issues in our lives.

It can be a pain but it's not too big a deal...it's just one of those things you have to deal with on occasion.  

The only thing I feel bad about is others who might not understand why we cannot always commit to meeting up with, or when we have to cancel suddenly, or explain why we just cannot do certain things with them.

It's all about the five-hour rule and the road trip of our life.  Everything goes as planned? Great! We'll get there and enjoy the destination but occasionally we hit those unexpected bumps in the road that keep getting in the way of that goal.

I hope something like this post can help explain that it's not that we don't want to do those things, it's just the realities of our lives means it cannot physically be done because the five-hour rule dominates our lives.

Darryl Musick
Copyright 2017 - All Rights Reserved

Caregiver Chronicles: In Praise of the Mighty McNugget

One of our duties as caregivers is feeding. Tim is very limited in his ability to feed himself so Letty and I have to step in to do it.  It's not because Tim has a special diet, it's because of his limited motor skills that he has problems using utensils and keeping the food either on the plate or in his mouth instead of everywhere else.

We've graded each food on how easy it is to feed him...pizza, hot dogs, penne, and macaroni are among foods that are easy. Burgers, depending on how elaborate the toppings are can be easy or a pain in the ass.

God forbid if Tim wants to eat a chili cheese burger.

The Holy Grail, however, are the foods that Tim can feed himself.

Not too messy finger foods, like grapes or fries, can be handled by him. I can cut up a banana or an apple and he can also feed himself using a special OXO grip fork we have for him.

For breakfast, I'll alternate between a banana, apple, grapes, or maybe another seasonal fruit put in a little compote bowl for him where I can just sit it on the table and let him go to town (Tim's never been a big breakfast person so he doesn't eat or care for the egg dishes I cook).

Sunday, in particular, is a day I like to take it easy.  Of course, that's a relative term around here.  On the Day of Rest, I still have to cook two meals, feed him dinner, get him dressed, help him with his bathrooming, put him in his recliner for his evening relaxing time in front of the TV, get him undressed and put him back in bed (yes, that's the easy day...).

Since I'm trying to relax and take it easy, Sunday is also a lunch treat for Tim and myself.  I'll go get him the ultimate feed-yourself lunch...a chicken nugget meal from one of our local fast food restaurants.

The nuggets are the perfect size for Tim to pick up, dip in the sauce, eat, have a few fries, and wash it down with a strategically placed soda and straw.

For those fifteen minutes, I'm in my happy place where Tim can do something for himself and I can have a little time to not worry about it.

Yes, I will always praise the Mighty McNugget for the small weekly break it gives me.

Darryl Musick
Copyright 2016 - All Rights Reserved

CAREGIVER CHRONICLES: Navigating the Route from Childhood to Adulthood - Parents Edition

We are not only primary caregivers for Tim but also his parents. This has been a path of growth for both of us over the three decades we've been together and it is not always easy to let go of being a parent and transitioning over to letting him be an adult.

I imagine it might be easier if your child is able-bodied and able to do things for themselves. They can get a job, move out, start a family...but that is not how it is for us.

It's a precarious balance. On the one hand, we have to provide care for Tim's needs. We have to protect him, and I mean that literally, as he can't really fend for himself without being watched over such as being out in traffic, getting stuck somewhere without help for feeding or bathrooming, even just getting his chair stuck in a rut...someone's pretty much always got to be with him to keep him out of trouble or from getting into it.

On the other hand, we need to let Tim grow up and be an adult. He's intelligent and able to make decisions for himself. We have avoided the 'conservator' or 'legal guardian' route because he is of age and has the mental capacity to think and reason his way around things.

Since Tim graduated from college and reached adulthood, I've been striving to treat him as an adult, to let him know he's an adult, and to know that I am no longer in the role of raising him to adulthood. Yet, we live together and out of necessity have a very close working relationship with each other.

As you can imagine, sometimes that leads to frustration and one of the other of us losing our patience with each other. Tim may lash out at something and, out of habit and frustration, I will slip back into parent mode and snap back.

It's not something I'm proud of and we have both been working on it for awhile now.

While I strive to clamp off my parental instincts, it's not always that easy but I do work hard to see him as an adult and treat him as one.  I also remind others sometimes that, yes, Tim is an adult and you need to see him that way too.

Independence is another big hurdle for us. At this point, we know that Tim will never be fully independent. Even without us, someone will always have to be there to provide care for him. That being said, we still strive to get him to be independent as possible. Try to get him to go out by himself to see a movie or other excursion; let him be alone in the house for a bit while we go to the store...things like that.

Those periods of independence work out pretty good but we've still got to remember the five hour rule...Tim can only go so long before those needs that need caring for bubble back up to the surface.

Another thing I try to do is not hide anything or sugar coat things from him. We've talked about the inevitable mortality of my wife and I and what he'll need to do at that time. We've worked with him on achieving a financial literacy so that he will be able to manage his money once we're not around anymore. What he needs to do in an emergency. I've even trained him on how to get out of the house by himself if there's an emergency and we're not there to do it for him.

At the same time, we do try to provide a loving and caring environment for him. He knows that he's welcome to stay with us forever and we'll be his caregivers for as long as it's physically possible. He knows that we love him and that we see him as a valued family member, not a burden.

And, yes, sometimes we'll snap under the pressure but that we'll take a breather and talk it out until we reach a resolution. We'll admit our mistakes, and work on ways to try to remember...we're all adults here.

Darryl Musick
Copyright 2017 - All Rights Reserved

Caregiver Chronicles

November is National Caregivers Month. A perfect time to start something new here at The World on Wheels.


Welcome to a new occasional series of posts. As you know, our son Tim has cerebral palsy and is severely limited in what he can do physically. As a result, he's very mobility challenged and has to use a wheelchair to get around in.


Tim's been doing an excellent job with his Cerebral Palsy Stories series, trying to explain to us what it's like to be someone who is disabled and has to rely on others for help.


Since I'm one of the "others for help" he must rely on, I thought I'd let you know some of the joys, trials, and challenges of being a caregiver.

Before getting into more details, I just want to first establish a few general ground rules.  First, no pity.  It's just the way life is for us and we've accepted it and adapted to it. Since Tim was born, we've known no other way so, as life is just normal for you, this is just normal for us.


Second, Tim will vet each of these posts to make sure I don't go too far in each revelation. Whatever you read here, be assured that he is OK with it.


And, lastly, this is tailored for our situation. That is taking care of a child who is now a man that cannot walk, dress himself, or do most of the other self-caring tasks we take for granted. Otherwise, Tim is smart, well educated, can talk for himself.


We make no pretensions on understanding what it's like for other caregivers taking care of special needs persons that we have no experience with.  For example, we don't have a clue what it's like living with someone who is on the autistic spectrum, blind, mentally challenged, etc., although I appreciate those who are to comment and help us all to understand those aspects of caregiving also.

So what is a caregiver? Basically, someone who provides care to someone who cannot provide it to themselves be it feeding, bathrooming, dressing, or any number of daily activities we humans have to do for ourselves.


If you're a parent, you know what that includes. Your children were once babies that depended on you for everything.  Not all children outgrow that period and some people revert to it via injury, disease, or just aging later in life.


Caregivers can include family members or professional health care aides or even a combination of the two.


I'll just leave it at an introduction this week and delve into some more details in upcoming posts.


Darryl