Saturday, November 22, 2014

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Confession: I am much better about talking about tips for a successful respite than I am about actually taking respite for myself!

A pedicure and a new pair of shoes -
my favorite form of self-care
It has been a while since Richard and I had a weekend for just the two of us so I planned an overnight visit away for Robert.  I contacted the facility we have used in the past and there was some concern about Robert’s past difficult behavior and the fact he now uses a wheelchair. 

Robert’s medications have been changed since his last visit and his mobility isn’t great but he can transfer which was their concern.  I suggested I bring him for the day to start since it had been several months since Robert had visited.  The director agreed that would be a good plan and assured me Robert was very welcome but his staff wouldn’t be able to care for Robert if he couldn’t transfer from a chair.  I assured him that he could do that and can even use a walker for short distances. I also reiterated that Robert's behavior was much improved since his medications were changed. 

So my plans for a weekend respite turned into seven hours.  Plus, not only did I have less of a break, I had to pay out of pocket for the afternoon.  Robert’s regional center will pay for overnight visits but not day visits. 

Planning a weekend respite included running errands, doing chores around the house and partaking in a bit of self-care – maybe a massage or manicure. 

Guess what went out the window with the “weekend" respite?

I told you I am better about advising people to take respite and taking advantage of self-care than I am about actually doing it!

These few tips are as much for me as they are for other caregivers.

Find out if your caree qualifies for paid respite.  For example, Robert qualifies for respite because he is a client of the local Regional Center. Other caregivers receive respite care benefits through the Veteran’s Administration.

Find a good care facility.  Finding a place you have confidence in will provide peace of mind while taking respite.  If possible, keep the same facility for each respite break so the staff is familiar with your caree and the caree is comfortable with the staff.  It makes a huge difference knowing your loved one is in good hands.

Self-care, Self-care, Self-care. Whether it is taking a walk, taking a trip, seeing a movie, reading a book, hanging out at home with the animals or getting pampered, it is important to use respite for some “me time.”  Of course, there are errands and chores that need to be done but I don’t recommend doing only errands (unless you just love to do them).  

Don’t feel guilty about taking respite. (Sure, easy for me to say!)  Taking a break refills my bucket.  It helps me be a patient person. Respite rejuvenates me so I am a better caregiver (at least it does when I don’t squander it on chores). There is no reason to feel guilty about taking a break.  If that still doesn’t convince you, then think of it as doing your caree a favor. They may need a break from you too! 

Please add your own tips in the comment section (I might listen to you more than I listen to myself!).

Oh, and as far as that weekend respite? We have one scheduled in a couple of weeks. 

Never give up!

Friday, November 21, 2014

Epilepsy Awareness Month Day 21: Managing Incontinence

Before we get to today’s topic, I just want to say: OH MY GOODNESS!  We are two-thirds of the way through Epilepsy Awareness Month! My purpose this month has been to post a video each day about the impact epilepsy has had on Robert.  My intent was also to keep the videos to two or three minutes. 

Well, one out of two isn’t bad.  

So many choices - at the pharmacy and online
There is just so much information to share that it is difficult to keep the clips short but I am still trying!  I sincerely appreciate everyone reading and watching and sharing in order to help spread epilepsy awareness and education. 

Managing incontinence has been a struggle for us.  When Robert was younger, he would lose control of his bladder during seizures but that is different than general incontinence. When I first took over Robert’s care, I had no idea he was incontinent.  He started out in a Skilled Nursing Facility since he was on long-term I/V antibiotics and the staff called to ask if Robert was incontinent. 

I answered no, not at all. Why do you ask?

They then told me how he was not able to make it to the bathroom and how he was wetting the bed overnight.  I still didn’t consider him incontinent; I just thought he was having accidents. 

The first step to managing incontinence is to recognize what is happening.  Even after agreeing that Robert is incontinent, I kept him in pull-up style briefs so that he could go to the bathroom on his own and only have the pull-ups in the event of an accident.  I was trying to keep Robert as independent as possible and ended up just never actually catching up to the incontinence. 

Once I realized Robert was really, truly incontinent I would warn all health care workers when Robert was in the hospital or in a SNF.  I explained that he is especially wet overnight and they would nod their heads and tell me they would be able to take care of it.  Then the next morning they would tell me, “Wow! He is definitely incontinent.”

Welcome to my world.

Robert’s incontinence is due to a combination of the signals from his bladder not reaching his brain fast enough and not being able to move quick enough to get to the bathroom in time. This is all part of his increased cognitive impairment and overall decline due to his uncontrolled epilepsy.

This is the impact epilepsy has had on Robert.

Here are few tips to help manage incontinence:

  1. Consult with a doctor about the incontinence.  The physician should be aware of it in order to find an underlying cause that needs to be addressed;
  2. Figure out what is covered by insurance. Check with a medical supply store or pharmacy to see if incontinent supplies can be covered by Medicare, Medicaid or other insurance plan. Robert gets a monthly allotment of incontinent supplies paid for by Medicare and Medi-Cal. While I am grateful for the assistance, there are never enough supplies. Richard and I spend between $150 to $200 month on extra briefs, bed pads and gloves and could spend more. We realize not everyone can spend extra on supplies. Get as much as possible covered by insurance and then prioritize to figure out what supplies are needed and how much extra money is available to spend on them;
  3. When shopping for briefs, size does matter. It is very difficult to put a brief on another person if it is too small. In addition, a too small brief will not be adequately absorbent;
  4. Absorbency is critical. All briefs are not equal! The monthly supplies we get include a medium absorbency brief (it is classified as “maximum” absorbency but it is not.)  We order a more absorbent brief online and use those as much as possible but they are expensive so we can’t use them all the time. Instead, we use the less absorbent briefs when we are home during the day and we change Robert several times throughout the day;
  5. Invest in cloth bed pads. I didn’t do this until recently and am kicking myself for waiting so long! These are so much more absorbent than the disposable bed pads which is good for both Robert’s skin and the bed;
  6. Use a barrier cream. Urine is very harmful on the skin and a barrier cream can keep the skin healthy. 

I would love to know what tips you have for managing incontinence.  Please let me know in the comment section.

Thanks again for helping to spread epilepsy education and awareness! 

Thursday, November 20, 2014

Epilepsy Awareness Month Day 20: Memories

One impact epilepsy has had on Robert is on his memory.  I don’t quite understand why he has memory problems (which have definitely increased as time goes by) but I am positive it has to do with his overall decline from epilepsy, his brain surgeries, medications, head trauma and uncontrolled seizures. 

Robert and our childhood dog, Tara
Rereading that sentence makes me realize that I do understand why he has memory problems but I don’t quite understand the mechanics and details of it. Whenever I am unclear on something going on with Robert, I do some research and then talk to his neurologist about it.  Epilepsy Action “the UK’s leading epilepsy organisation” addresses the topic of memory problems in people with epilepsy.

Robert’s neurologist is aware of his memory problems but we haven’t done anything yet to resolve them.  I am not sure there is anything that can be done considering he has to be on all of the medications he is on and the damage to his brain from the traumas and surgeries has been done.

Sometimes after a seizure, Robert is confused and doesn’t know where he is or who we are. Recently, he has had trouble remembering who I am, in particular.  He has even said things like, “You’re not Trish” or “You’re like a sister to me” but these have been after a seizure. 

This morning, I was driving Robert to Day Program and was talking about the weekend when Robert said, “My sister Trish is going to pick me up that day.” 

I did a double-take (it was a quick one since I was driving).  It is possible he had a quick seizure that I didn’t notice but it was very disconcerting.  Eventually he realized I was Trish but it took a few minutes of talking to him for him to realize it.

What is amazing to me is that he remembers things from when we were kids (better than I do) but can’t tell me what he ate for lunch. (Although, he was able to tell me that he did not have Rocky Road ice cream last night for dessert so it was Rocky Road ice cream night tonight.)

Robert started telling a story at dinner out of the blue.  I grabbed the camera part way through and captured him talking about moving out to California, his favorite book which he read as a young boy and also about changing schools when he was in high school. 

He said he had to change schools because he was having too many seizures and the school asked him to leave.  I don’t remember this but don’t doubt it one bit. 

It broke my heart a little.

The clip shows how Robert struggles for words at times and also searches for a memory that he just can’t quite reach. 

The background noise is distracting so I apologize.  I didn’t intend to film him during dinner but didn’t want to pass up the opportunity to capture his memories. 

Wednesday, November 19, 2014

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Despite my best efforts to keep Robert from getting my cold (which I got from Richard, by the way), Robert got sick.  He was congested for a few days then it hit in full force and last night Robert was wheezing and shivering which usually means a temperature is about to break out and pneumonia and sepsis are not far behind.

Credit: World Sepsis  Day Organization
There is always a concern of pneumonia and sepsis with Robert since he has weak lung muscles (part of his overall weak muscles and, yes, this is all due to a lifetime of uncontrolled seizures).  Robert is unable to get a good cough to get the congestion out of his lungs.  It just sits there brewing bacteria.  Then it turns into pneumonia, (usually with sepsis) and Robert is in the hospital in no time. The hospital stay leads to a decline and it takes forever to get Robert back to baseline. 

We have to stop this downhill ride as soon as we can.

When Robert is sick, I take his vitals at least twice a day.  Signs of sepsis include fever, high pulse rate and low blood pressure so I am on the lookout for these symptoms.  We keep a log of vitals so I know what his usual stats look like.

Robert’s pulmonary doctor agrees (his GP is a little less aggressive in his treatment so happily punts to the pulmonary doctor). The plan we developed with the pulmonary doctor is to put Robert on antibiotics early so that his colds do not develop into pneumonia.

Of course, colds never happen during regular doctor’s office hours.

While getting Robert ready for an early bedtime and dinner in bed, I called the doctor’s office and left a message for the GP on call (sometimes I call the pulmonary doctor’s service first but occasionally I start with the GP).  Robert’s doctors are very good about returning calls quickly and this wasn’t any different.

Since the doctor calling me back most likely doesn’t know me or Robert, I try to establish very early in the call that I know what I am talking about.  I am so adamant about not taking Robert to the hospital unless absolutely necessary, I don’t want to be dismissed.

I give a brief history of Robert’s pneumonia and sepsis, my reluctance to go to the hospital due to that causing a decline (I have yet run across a doctor who disagrees with this), rattle off his vitals and any other symptoms (labored breathing and shivering for instance).  Then I ask for antibiotics. 

There is usually hesitation which I completely understand.  However, Robert is not a healthy, young man who might become resistant to antibiotics when he is ninety. He is already resistant to a few antibiotics. It is more of a risk not to put him on antibiotics. 

Still the GP hesitates. They have to look at the chart, they have a policy against prescribing antibiotics until there’s a fever, they want me to wait until morning.

Deep breath.

I explain Robert has a pulmonary doctor and would they mind if I called that exchange as they have prescribed antibiotics in the past.  I’m not really asking permission but I do want to give them a courtesy “heads up” that I am going up the chain. 

They are usually more than happy to have me do this.

So I start over with the pulmonary doctor after hours number.  Run through my pitch for antibiotics and get them. 

Last night we were up against a deadline: the pharmacy was going to close soon. Yikes!  I need these antibiotics!

I was thrilled when the on call pulmonary doctor was Robert’s own doctor!  Woohoo!  I didn’t have to make my plea – I just had to give him the phone number of the pharmacy and tell him the last antibiotics that worked for Robert.

Hospitalization averted!  (At least everything has been done to avoid a hospitalization.)

We just wait for the antibiotics to work and for Robert to feel better.  I talked to Robert tonight to see how he was feeling and he said he is feeling a lot better now.  He then tells us about other people helping him and has a special message for Bowen – apparently someone who helped him out today at Day Program.