Thursday, July 28, 2011

Seizures – How to Help

In my last post, I gave a brief overview of epilepsy (what it is and isn’t, how people get epilepsy and the types of seizures a person may have).

Today is all about what you can do to help if you see someone having a seizure.

I forget that seizures can be scary (probably because I’ve witnessed more seizures than I can count and am so used to them) but do realize they can be frightening for someone who has never seen one. Seizures usually happen without warning although there are some people who experience an aura before a seizure which gives them a brief moment to react (for example, sit down if they are standing).

Robert has experienced the aura before but it doesn’t happen with every seizure. He says when he was little he would see things in the colors “red, green and blue.” He also used to tell us he was able to see cartoons in his head. I think these must be a little boy’s descriptions of the aura before a seizure. Robert also tells me he can sometimes fight off the seizures if he feels one coming on. I’ve always wondered if this is actually true but I don’t doubt the power of the mind so can believe it.

There are a few things to keep in mind if you see someone having a seizure. First, you don’t have to do anything if the person is having an Absence Seizure (also known as Petit Mal and looks like a brief period of staring). Robert sometimes has these when we are playing cards and I just wait until it passes (his usually last 10 – 20 seconds). It’s a good opportunity to peek at his cards but I refrain from taking advantage!

Tuesday, July 26, 2011

Epilepsy: What is it and Can I Catch It?

Since Robert is doing his own educating about epilepsy, I was inspired to do a little educating about it too. 

First, the facts:

What is it?

Epilepsy is a medical condition that produces seizures (it’s also sometimes called a “seizure disorder”). Seizures are caused by an abnormal surge of electrical activity affecting all or just a part of the brain. If a person has two or more unprovoked seizures they are considered to have epilepsy. Epilepsy does not discriminate and affects all races, both sexes and is found in all countries.

Epilepsy is not a mental illness nor does it cause mental illness and epilepsy is not caused by demons (as was thought 3000 years ago).

Depending on the source, between 2 and 3 million people in the United States have epilepsy and, approximately, 50 million people worldwide have it (according to the World Health Organization). Epilepsy can be treated in approximately 70% of the cases (which means a person is seizure free for 5 or more years while on medication). 75% of those cases can eventually be taken off mediation. Ten percent of patients have uncontrolled epilepsy even with medication or other medical means such as surgery (this is the category Robert falls into).

How do you get it?

Don’t worry, you can’t catch it.

For 6 out of 10 people with epilepsy there is no known cause. For those 4 out of 10 other people, the cause could be a brain tumor, a blow to the head, loss of oxygen or trauma during birth or a stroke that deprives the brain of oxygen. High fevers in very young children can also cause a seizure.

We don’t know what caused Robert’s epilepsy but, according to our Mom, he didn’t have an easy birth. Mom broke her tailbone while in labor with Robert and the doctor had to use those barbaric clamps to pull him out (we’ll never know why they didn’t just do a C-Section since there were obviously some issues with him wanting to come out!). Finding out what caused Robert’s epilepsy is not really important to me. I’d rather concentrate on helping him now than looking backwards.

Friday, July 22, 2011

What if . . .

Now that we’ve made the decision to move Robert into our home, we have work to do! One contractor came to the house last week but he hasn’t sent me his quote yet (I’m anxious to get this moving along!). His ballpark figure was higher than I’d like but his specialty is plumbing which is what concerns me most. Robert needs a good shower with plenty of bars to hang on to as well as a built in seat (or at least room for a shower chair). He also needs a sturdy toilet since he’s kind of rough on them (and has broken one or two in the last few years).

The worse the "before" picture, the better the "after" picture

Hubby and his brothers erected a wall in the garage a few years back when we were using that space as an office but since we didn’t add heat or air, that concept didn’t last long and we now use it for storage. Embarrassing, messy storage of stuff accumulated over several years.

We do have help – hubby’s brother is a licensed electrician which is a pretty handy thing to have in the family! He already said he could do the electrical work which means dinner is on us for a very long time (somehow, though, the promise of a lifetime supply of veggie burgers probably doesn’t appeal to the man who single-handedly keeps Carl’s Jr. in business).

We also know a reputable air/heating guy (the husband of one of my co-workers) and I’d just as soon give him our business as some stranger the contractor drums up. We meet with him on Sunday (don’t worry, Jenn, we’ll pay him in actual money and not veggie burgers).

Wednesday, July 20, 2011

Good News and Better News

Here’s a news flash for you: Life doesn’t hand you one situation or problem at a time! Can you imagine how easy it would be if things worked that way? What would we do with all of our time if that happened? Many, many caregivers are either serial caregivers or caring for more than one person at a time. (According to a survey done by more than 26% of the respondents were currently caring for more than person at a time.).

Today, though, was a day for good news! Robert’s neurologist read his recent EEG results and said they were very similar to the results from a few years ago. Obviously, they’re not “normal” but they’re normal for him! So we know from the MRI Robert hasn’t had a stroke and we know from his EEG that his brain activity is stable. Woohoo!! This is really good news! The EEG and the MRI don’t explain why Robert’s memory and balance is worsening but I think we can safely assume that the seizures play a huge part in the decline and, in my very biased opinion, so does New Home. I can’t do anything about the seizures but we’re working on the problems with New Home by having Robert come live with us. I met with the contractor last night and so we are moving along with our garage conversion!

We found out even better news today, though, about my wonderful mother-in-law, Carol. She has been through a horrible time this past year: stroke, heart attack, speech and physical therapy, valvuloplasty, infection from the valvuloplasty and now bloody fluid on the lungs.

Uh oh.

Sunday, July 17, 2011

Making Sense of Healthcare Coverage

Let me start off by saying I am very grateful for the government healthcare assistance Robert receives. Really I am. Sometimes, though, I am left scratching my head about coverage decisions!

1. Vision care. When Robert first moved to a care facility in Sacramento, he needed a primary doctor and I also thought it would be a great idea to get his eyes checked and for him to see a dentist. I was fairly confident he hadn’t seen either in quite some time so wanted to take care of this for him. The primary doctor was priority number one so arranged that using the doctor affiliated with his first care facility (he now has a new doctor that is affiliated with New Home and will have yet another one once he moves in with me). Eyes and teeth were next but before the eye appointment, I bought Robert reading glasses because he was squinting while working on his word search puzzles. Can’t have that! Sat him down on the seat of his walker at CVS, gave him several pairs to try on to find the right magnification as well as a style he actually liked. Hours later, he was able to read his puzzle book without squinting! The vision appointment was made but then something happened and I needed to change it to the following month.

Well, vision coverage wasn’t covered the next month (it must have been a new budget year). Ugh. So much for that idea! At least Robert had the reading glasses and was able to do his puzzles. Once Robert moved to New Home, vision coverage was restored and his eyes were checked (and the doctor confirmed the reading glasses we bought were sufficient). When Robert moves in with me, vision check ups are back to not being covered. Even though, it would seem, the state is saving money by having Robert live with a family member.

Can someone explain the logic of this to me, please?

Thursday, July 14, 2011

Diving into the Deep End

No sense burying the lead: We have decided to move Robert into our house. (Shh! It’s a secret right now so don’t tell New Home or Robert).

Ack! Phew! Goodness Gracious! Wow! What am I doing?? Sigh . . .

Moving Robert into our house has created a mini-explosion of emotion inside of my head and heart. This was not a decision made lightly but I know this is the right decision. (I’m not telling Robert just yet because he has no concept of time and he’ll think he’s moving in tomorrow).

I have been on this path of caregiving with Robert for a few years now (he was able to live fairly independently before 2008). Moving him in with me and my family seems to be the culmination of a natural progression of me caring for him but the decision was not taken lightly.

A while back, I decided to move Robert out of New Home and began searching for another home for him. I wanted to take my time to find the best place for him and got a couple of referrals from people who are familiar with clients at these homes. I researched the homes and checked on any citations and fines they may have had. I “Googled” them to see if they had been in the news for any problems at their facility. I checked the ownership of the homes to be sure the corporation that runs Robert’s New Home wasn’t involved in these homes.

I just couldn’t bring myself to see the homes.

Saturday, July 9, 2011

Table Talk: Your Caregiving Journey

This morning I was interviewed by Denise Brown of on her weekly radio program, "Table Talk."  We talked about how my relationship with Robert has changed over the years, our recent experience at the JC Penney Hair Salon (always a great place for an epiphany!) and a surprise announcement from me about Robert's living situation (which I will tell more about in a different post).  You can listen to the program here.  Thank you, as always, for your support!

Monday, July 4, 2011

“Just” a haircut?

Getting a haircut is not a huge deal for most people. I personally love to get my hair done because it’s an excuse to sit back and relax and have my scalp rubbed while amusing the stylist with the result of my feeble attempts to cut my bangs (“Trish, please come in for a quick bang trim between cuts! You don’t have to live with crooked bangs!”).

Before. . .
If Robert doesn’t keep his curly locks cut, he tends to start looking like Einstein with his unruly head of hair. Add “helmet head” to it and he needs a sprucing up every now and then. I decided to add a mustache trim to this trip since the last time his mustache was trimmed I did it (see above re my ability to cut in a straight line).

The appointment was at the local JC Penney because Robert is treated well and there is easy access in and out. Parking is available in the shade (a must when it reaches 100 degrees as it did yesterday), the elevator is not too far from the entrance and the salon is just off the elevator. Add to that the availability of restrooms across from the salon and we have everything covered.

Robert had an appointment with a new stylist which puts my protective shield up a bit since I don’t know if she’ll be uncomfortable with a disabled person and I tend to prepare for the worst. She started off making us wait 15 minutes (tick tock, people, we have a specific window between med times and thought three hours was more than enough for a 45 minute hair cut). She apologized profusely so I decided against holding a grudge, writing a letter to her supervisor and getting her fired. I suppose I can just be here for Robert’s haircut and not try to change the way Penney’s does business.

While Robert settled into the shampoo chair, the stylist asked me, “What happened to Robert?” Great question and I appreciate when people ask instead of staring in awkward silence. After answering, “He has epilepsy” and feeling the ears perk up of the other stylists and customers, I thought this was a great opportunity to talk about epilepsy and maybe teach a thing or two in the process.

While I sat congratulating myself for wanting to seize this educational opportunity Robert beat me to it.

Sunday, July 3, 2011

Tools for Your Caregiving Tool Belt – Support for the Caregiver

We’ve added Education and Navigating Care Facilities & In-Home Care to your caregiving tool belt. We’ve also given a few tips on Navigating Government Programs (which is my personal favorite although it is the most exhausting!). After all that work, the caregiver now needs to do a little something for themselves.

The hardest part of finding help for the caregiver is actually convincing the caregiver how important it is to take care of themselves. In my “Caring for the Caregiver” post, I mentioned women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts. Let’s try to fix that.

For many conditions and diseases there are websites and online support groups supporting either the person living with the condition or their caregivers. In-person support groups are also available but many caregivers may find that it is too difficult to find care for their loved one while they attend the group meetings. Others may not be comfortable talking about their feelings or problems in a room full of strangers (even if they are in the same boat).

Online support can be a lifesaver for those who feel alone. This allows for a sense of community as well as an opportunity to learn how others solved problems that we may not know how yet to solve.