Caregiving Stories & Tips

Younger person holding older person's hands.
Caregiving is in your hands.

Being a caregiver for your family can be challenging. At Semafores we know this from experience. Curi™ will help you stay on top of your caregiving responsibilities and keep your family working together as a team, but it won't solve all your caregiving problems. Also, Curi™ is not quite ready yet. If you are looking for some tips to simplify caregiving while you wait, or need the comfort of knowing that you are not alone. We've written some articles based on our personal experiences as and with family caregivers.


Articles

Dad hugging adult son.
Always your kids.

Parenting Adult Children

When it comes to children it can be said that they are always always entering a new phase. That is what growing up is about. I didn’t realize, however, just how much of a generational thing this is. I remember Thanksgiving dinner with my mother, aunts and uncle when my wife and I were turning 50. There was conversation around the table and I remember rather distinctly, though I don’t recall the details, that my wife and I were being referred to as the kids. Now I am not one to stand on formality but I had a teenager and a grade schooler at the time. How can my wife and I be the kids? Of course, this is all part of life’s perspective. I am the youngest of all my cousins and the youngest in my family so, in a way, it makes sense that we will always be the kids to my parent’s generation.

Broken glasses.
Spare pair?

Last week I had a minor accident. I tripped over a step and face planted into the sidewalk. I escaped with a few scrapes and bruises, which are healing nicely. More serious was the damage to my glasses, which were smashed beyond repair. Without a backup pair, other than my prescription sunglasses, I had trouble seeing my computer screen for a few days, and was very reluctant to drive at night, which is a big issue when night starts at 4:30 in the afternoon.

We Can Help posted on a cork board.
Common sense advice

Often, when I am searching online for content to repost to Semafores’ social media feeds I find articles offering advice to help family caregivers. Sometimes it comes from professional caregivers or experts in the field, other times from family caregivers passing on the wisdom of their experience to others. Many offer advice on how to care for elderly relatives, others on caring for children with medical issues. Regardless of the point of view of the author or her intended audience much of the advice is the same. A few simple principles are repeated in many variations.

A sigh reading Are You Ready?
Well...are you?

The most common answer to “Are your ready?” is “Yes.”. For me that usually means I will be ready in just a minute. Recently, I was awakened to just how not ready I was. How I had been on autopilot until the situation changed and I had to deal with it. Had I really been ready the problem would have been, not simple, but more manageable.

A woman facing away.
Not everything is your fault.

It's painful isn't it? Seeing your child ill, struggling to overcome crosses which she's too young to bear: illnesses mental, physical, or emotional. It must be something you did, right? She's too young to have brought it on herself. Maybe it was something that you did or didn't do while you were pregnant. Maybe it was a medication. Maybe it's environmental. Maybe it was the partying you did in college. Maybe it was the worry and stress when you were pregnant. Maybe it's just genetic. But half the genes come from you, right? Maybe if you paid more attention you wouldn't have missed it. She's too young. It must been something you did.

A group of medical professionals.
Managing your medical team improves care.

With Curi™ we help you stay on track with your life but to stay on track you need to start off on the right track. The better you can describe your situation to your doctor and the better you understand what your doctor has told you you need to do to get or stay healthy, the better.

So, starting before your next doctor’s appointment, what can you do to better prepared to get the most out of your visit.

Pills in a breath mint container.
Gil's Pills

Very seldom do I see a hack that makes so much sense that it is just a gimmy. Let me explain. Curtis’s blog post “My Medication Hack”—about taking his meds with him everywhere, so whenever he remembers to take them, there they are—hit me right between the eyes. I take vitamins. I mean, I try to take vitamins. Not a single daily multivitamin. My brand takes organically grown foods that are then concentrated and made into vitamin supplements. So instead of one pill this becomes three pills, twice a day. Then I take calcium supplements and another supplement to insure my joints stay limber. All told I take about thirteen pills a day. Anyway that’s the plan. So there is no way I’m humping all these bottles and trays of stuff with me everywhere I go. Then where’s the benefit of this ‘take the bottle with you’ hack? Lets start back at the problem. I have a seven day pill case with an AM and a PM side. Every Sunday I fill it for the week. Every morning and every evening I am supposed to pop open the appropriate hatch and take my pills. Problem was every morning I would walk out the door without taking them.

Bottle spilling pills.
One pill...should be easy.

I’m very fortunate when it comes to my health. I’ve reached my mid-forties without ever having been seriously ill or badly injured. I’ve never been hospitalized and have only one chronic health concern. I have polycystic kidney disease (PKD), a genetic kidney condition that causes progressive deterioration of the kidneys leading to eventual kidney failure. I was born with it, of course, but I’ve known I’ve had it for about twenty years. PKD can cause pain and other symptoms, but in my case there are none that I would notice. My doctor noticed that my blood pressure was starting to rise, which is a symptom of PKD and very important to control because high blood pressure itself can cause kidney damage and accelerate the progression of the disease.

Boy climbing on a wall.
Going up!

This is the second of a series of posts on Julie Tittler’s experience with an experimental medication for her son’s ADHD.


We can breath! We’ve found a foothold!

In Grasping at Straws, I wrote about how we had tried every class of medication approved by the FDA for use in treating the inattentiveness and executive function deficiencies associated with ADHD. All caused my son such severe side effects that he had to be taken off of them. Fortunately, his psychiatrist, who is one of the top pediatric pharmacopsychiatrists in the world, knew of a medication approved for treating moderate to severe Alzheimer's which has been showing great promise in treating ADHD, bipolar, and autism spectrum disorders in adults, Namenda. She had used it in some severe pediatric cases to great effect and told us it was one of our last avenues of treatment. No clinical studies have been done on its use in pediatric cases. Eeep!

A young man holding his head in his hands.
Sometimes they need your help.

When he was growing up I never thought of my son as having special needs. Oh, that’s not to say we didn’t go through our share of all the rest: ear infections, food allergies, speech therapy (I still smile when I remember when he said to us, “AH-hoo pie”. Priceless!) and asthma. We took it all as part of growing up.

He had few friends in grade and high school and he loved hanging out with them. He was either with them or on his computer or, later, building something for his electric guitars. But he was the oldest of two and by more than five years. It was easy for him to have solitude when he wanted it and a lot of the time he would disappear into his room and into himself.

Check mark in a box.
Check!

First, I should mention that I have felt that I have been fairly organized for a long time. In the late 90s I discovered the power of the Franklin Covey time management system (formerly Franklin Planner). In the 2000s while working for 3Com I fell in love with the Palm Zire, my first digital planner. For me it was all the power of Franklin Covey with the convenience of a digital interface. With it I could track appointments, stay abreast of tasks, even journal my car log. There is a certain ‘retentiveness’ about me that causes me to want to keep a history of my vehicle’s fuel economy with every fill-up. The Palm allowed me to put information about every fill-up into a form and upload it to my desktop and from there, into a spreadsheet.

I thought I had this organization thing knocked. Then I read The Checklist Manifesto by Atul Gawande. It was rather like seeing the world in three dimensions for the first time. Or perhaps more like how Morpheus in the movie The Matrix described to Neo “Have you ever felt like the world was pulled over your eyes to shield you from the truth?” And what was the truth? The truth was that I had a list of tasks that never got done. The truth was I had a list of appointments that I never booked. It was the hundreds of time wasters that trimmed my day down to the bone and made me feel like needed 4 assistants to do the scut work so I could do what I needed to do. I didn’t forget to do things any more. I simply set myself up to fail to get things done.

Grandparents with child
Who Cares?

Semafores’ Perspective on Caregiving

Curi™ is the Social Mobile Platform for Family Caregiving but what is family caregiving, and who is Curi™ meant for? If you read the news you may have seen the terms “family caregiving” or “informal caregiving” used to describe care given by family members to disabled, usually elderly, adults. By choice or necessity, these family caregivers give many hours of their time to caring for family members who can no longer care for themselves because of dementia or a disabling physical condition brought on by age or injury. These caregivers often must make considerable sacrifices in order to give their loved ones the care they need, sometimes even giving up their paid jobs to be available at all hours.

Nanny with a boy.
Ask the right questions for the best results.

This companion piece to 5 Interview Questions From A Mom Seeking a Special Needs Nanny looks at the conversation from the nanny's point of view. It was written by Helen Adeosun, former nanny, educator, founder and CEO of SitterCycle. SitterCycle provides professional development for nannies, enhancing their lives and the lives of the families they care for through education.

 

As a nanny, teacher, and caregiver, I have had the pleasure of knowing over 200+ children and their families either through my classroom or my experiences working with them directly in their home. One of my greatest challenges in each of these roles is also the most rewarding opportunity: getting to know as much as possible about each and every child that I encounter in a very, very short amount of time. Whether it was in my classroom or in the role of the Friday night babysitter, I had to navigate successful (and not so successful) ways of bonding and connecting with children in genuine ways often to get them to learn, to finish their dinner, or to get them to bed on time.

Mom with baby.
Finding the right person to help is hard.

This post originally appeared on SitterCycle.com on July 22, 2014 and is used here by permission.

All parents dread the day when they have to gather their courage and hand off care of their precious children to someone else. After all, it's a terrifying prospect to leave this vulnerable love-of-your-life with someone else, even if that someone else is a family member. It's particularly hard when your knowledge of the caregiver‐to‐be is limited to an interview, a background check, and some references. Many thoughts go through your head: How actively will she watch my kid? How will she react when my kid acts up? Will she yell and scream, spank, give perpetual timeouts, or take a more relaxed approach? Will she listen to what my child is really saying? What will she feed them? Now, take these fears, magnify them ten­‐fold, and add a bunch more to the list if your child has special needs.

Finding a special needs nanny can be hard, especially since special needs can be many different things, from autism to special medical needs, and different needs require different skills. There is so much to know, and so much to learn. By necessity, these parents are continually learning and training themselves to handle the issues involved. As hard as it is for parents to handle special needs, there is no guarantee that a caregiver can be found with a similar level of understanding and commitment.

That being said, the market for trained caregivers for special needs kids is large, untapped, and potentially lucrative. Parents of special needs children are desperate for a chance, even a small and sporadic one, for a break. As a caregiver targeting the special needs nanny market, you'll need to be prepared to answer some specific questions. While what these questions are will vary depending on the special needs involved, there are some commonalities:

Compass in the grass.
Pointing the way

Mental disorders have some of the most significant and enduring social stigmas of any conditions out there. This is why no one speaks of them. They sweep them under the rug, and lock them in the attic. It's why so many cases go undiagnosed for years, and health coverage for these conditions are limited when compared to physical maladies. With no outward physical manifestations, they are the ugly, unloved stepchildren of the frail human condition.

No matter how much people proclaim otherwise, we are all judged at first glance by our outward appearance and behavior. But, just because someone looks normal, it doesn't mean that there isn't something wrong--that the person needs help, patience, and compassion. You may just see someone with a really short fuse and aggressive temper. Someone with no social skills or little empathy. Someone who has really annoying habits like perpetually humming, chewing their fingernails, or periodically grunting. They are the "weird" ones. Better stay away from them. You never know WHAT they'll do. What you don't see is that the person with the short temper has severe ADHD; his emotions are physically amplified 10 times and he's never received any treatment for the condition so functioning day-to-day is an absolute horrendous slog. The weird co-worker who is socially awkward and terminally shy, albeit great at her job, has Asperger's. The old woman down the street who yells at the kids all the time is severely depressed because she has lost her son to cancer. That person humming, and chewing his fingernails needs the physical stimulation to be able to focus on tasks at hand.

Pile of straw
Straw

This is the first of what may be a series of posts on Julie Tittler's experience with an experimental medication for her son's ADHD.

What do you do when all the approved options for treating a condition don't work? When failure isn't an option because it means death or disability to the point of being non-functional? What do you do, when the care recipient is a child? You never give up hope. You perpetually grasp at straws.

This past week, my family had to take a deep breath and step into the unknown. My son has exceptionally severe ADHD, hyperactive and inattentive. Both criteria are off the scales. It is such a severe case of ADHD that without medication, he can't even feed himself because he's off like a flash mentally and physically. He can't concentrate long enough to eat, no less do any type of academics. We've been able to help his super hyperactivity with medication adequately. He's still hyper, but it's much more manageable.

Sick Mom cared for by girl.
Caregivers need care, too.

I'm the primary caregiver in my family. Always have been. Even when on "modified bed-rest" when pregnant each time, they looked to me, as I looked to my husband. I am not used to being the "cared for". But what really does it mean to be "cared for"? Does it mean being loved? Yes. But what I'm talking about here is having others look after your wellness needs either directly or indirectly. We primary caregivers just don't want it. We are the doers. I'll get it myself! I can do it myself! Don't worry about it. I'm good.

I have now been thrust into the opposite role. I don't like it. But here it goes...

Basketballs
Breaking the...ice?

My regular readers know my son has a number of special needs. One problem we have struggled with for years is social interactions. He has to go to the school on the other side of town to receive special services. This makes it hard for him to have a social life. Torn between the team-based learning classroom and the full inclusion classroom, he's not in one spot long enough to make social connections. Being "that kid", kids don't seek him out to play. Being weirdly self-aware of his differences, he's afraid to ask to play. The fear of rejection is only magnified by his issues, making it crippling at times. Even if he does make a friend at school, cementing those relationships outside of school is nigh impossible, because all sports placements are based on your local neighborhood school. Since he attends a school outside of our neighborhood, his acquaintances are on the other side of town, and sports are on our side of town. It's a bifurcated social reality that makes it almost impossible to have a social life.

Cartoon elephant.
The Elephant in the Room!

Part of the job of a caregiver is to be a detective. You can’t just handle situations in the heat of the moment without taking a second to think. Why is somebody acting out-of-sorts or not feeling well? Is it something they ate? Did something happen at work or school to set them off? Is there something new in their environment? Are they having a developmental growth spurt? Or, if they have mental disorders, is it a side-effect of their condition(s)?

A father with his young daughter.
Being Dad!

When my daughter, Maura, was born nearly thirteen years ago I was between steady jobs, selling books at Borders while I tried to develop a freelance web design career. The freelance career never worked out for me, but the retail job conveniently allowed me to work nights and weekends. When my wife, Jennifer, went back to work a month after giving birth, infant day care wasn’t a real option. It would have cost more than my take-home pay. I changed my hours so I could be at home during Jennifer’s working hours and stayed home with Maura. For the next ten years I was a stay-at-home dad.

Caring hands
Caring is not problem solving.

I was recently chatting with a friend of mine on facebook and I asked her what it was like to be the caregiver for her mother after her father died. She told me that, because of the physical distance, most of that fell to her sister, Gail. She very kindly reintroduced me to her sister and, again on facebook, I chatted with her.

The first principle that Gail told me a caregiver might need survive is the mindset that “It is what it is-”. “There may not be a cause, there may not be a cure, and there may not be any control over the PROBLEM.” As I pondered that I realized she probably was right. First, you need to care. Second, you have to show up and be there for the person. And third, you don’t get paralyzed by the circumstances but find ways to listen, hear what their needs are, and do something. It really is not about fixing a problem.