Chronic Pain Rears Its Ugly Head

Sand, meet ostrich.

Yep, I can be an ostrich when it comes to my husband’s chronic pain.

Dinner in Rome

Before I go any further, though, let me be clear about a few things:

1.       I love my husband;
2.       I had a fantastic vacation of a lifetime (of which I hope there are many more!);
3.       Husband (also known as Richard) has given his permission for me to discuss this;
4.       I’m going to be brutally open and honest;

I usually write about caring for Robert or about epilepsy or being a working caregiver.  Occasionally, I’ve mentioned Richard’s chronic pain. 

When we married fifteen years ago, we combined his daughter and son and my daughter into one unified family and the back pain came along for the ride.  Between surgeries, treatments, medications (some hits, some horrific misses), it has been a part of everything.

Almost from the get-go, Richard had to stop working, we filed bankruptcy, medication misses kept him from driving for a while (a real challenge with three active kids!) and, of course, he was in constant pain.

The intrathecal pump installed several years ago, in combination with prescription painkillers, has been a life-saver.  We are back on our feet financially, Richard is able to drive again and while his pain is constant it is more manageable.  We have settled into a routine where he knows when he pushes himself he allows himself a few days to recover. I’ve learned not to nag him about what he should or should not do (okay, okay, I said I’d be open and honest: I still occasionally shake my head at him when he’s doing something he shouldn’t). 

Coping with this for so many years and developing routines has allowed me to almost forget how we have made so many adjustments in our day to day life in order to manage his pain and keep it at a minimum.

I can be such an ostrich but it is a comforting place to be sometimes.

However, it was also my downfall on our Most Wonderful Vacation Ever (enjoy the gratuitous vacation photo). J

While I was madly preparing for our vacation by making sure Robert was well cared for and my absence from work was covered, preparation for a long, overseas trip with someone who has relentless, unforgiving, chronic pain consisted of a passing thought of “if Richard is tired or in pain, he will rest.”

Worst. Idea. Ever.

Some things we would do differently next time:

1.       Do not have three legs to an already long flight.  There were too many times we rushed to catch our next flight and too many opportunities for luggage to be lost.  Which it was.

2.       Ask for assistance!  We both thought running (or walking very fast) to the next gate was acceptable.  It isn’t.  Richard was already in pain from a long flight and one of us (probably me since I wasn’t in extreme pain and theoretically should have been thinking clearly), should have just asked the flight attendant to arrange to have a cart or wheelchair pick us up upon landing or sucked it up and made arrangements to make the next flight.  Oh, the benefit of hindsight!

3.       We will never, ever put Richard’s pain medication in our checked luggage.  Richard’s bag was lost for two full days once we made it into Rome and his minimal extra medication he had with him had already been taken to help alleviate the pain from the close to 24 hour flight.  The decision to put the medication in the checked bag was made innocently enough (Richard’s pump delays him through security already and he didn’t want additional delays because of medication).  Next time: it’s going in our carry-on just like my shoes did (you don’t think I’d risk losing my shoes, do you?).

A few things we did right (most, by accident):

1.       Since we were with our two daughters and one of their boyfriend’s, it was actually more economical to book a private tour at various destinations than if we had a group tour through the cruise ship (our vacation was both on land and by cruise).  This worked out because when Richard is in pain he is cranky, irritable, and not pleasant to be around and awful in crowds.  It was best we did the private tours since seeing the inside of an Italian jail for assault was not on our bucket list this trip.

2.       We relaxed.  Yes, there was the usual sight-seeing and rush to pack in as many activities as possible but there was also a lot of time to relax by drinking cappuccinos and enjoying gelato and the occasional daily glass of wine.  It took us several days of being told by Italians to “just relax” to realize how high-strung us Californian’s really are (who knew?).

3.       Richard took breaks.  Not as often as I think he should have but I have to give him credit that he at least did take breaks.  Our visit to Cannes (yes! That’s where the famous film festival is held!), was particularly difficult for him.  The kids were exploring the beaches ahead of us and Richard finally had to stop and sit.  We left the kids (I use that term loosely since they’re in their early twenties) to explore the beautiful seaside town and Richard and I took a more leisurely pace in our exploits.

Now that we’ve been back for a week or two, I can clearly see what we should have done differently to make Richard’s pain more manageable.  Of course, in the throes of his pain and the lashing out verbally at the nearest person (usually me), I was ready to never go on vacation again.  At least, not together. 

However, I really think with more preparation, more built-in relaxation times and a little less lost luggage, we can manage the pain better.  Whether we are traveling or going about our daily lives, unforeseen crap is going to happen.  The reality is that being in pain makes it extremely difficult to deal with that extra crap.  A person with chronic pain has zero extra reserves to deal with anything except their pain. 

As with so much in caregiving, preparation is critical. I won’t stick my head in the sand again, though, by being delusional and thinking the next time we travel will be all roses and sunshine and butterflies.  Both us of will have to prepare more and hope that Richard’s pain management will benefit from that preparation.

I’d love to write more about chronic pain in order to help others dealing with it.  If you have a story about chronic pain and how to manage it, please share in the comment section here. 

In the meantime, I need to test my theory about preparation helping with the pain and start planning our next Most Amazing Vacation Ever.

 

Going on Vacation? Eight Tips to Prepare both You and Your Caree

I went on a family vacation without Robert.  Readers, friends and family know I struggle with guilt whenever I go away.  One thing I do not struggle with is preparing Robert, his care facility and even me for my absence.  

And, no, I am not writing this post just so I can share pictures of My Most Wonderful Vacation Ever.

Enjoying Barcelona with my Daughter

 

Everyone has their strengths.  Mine appear to be spreadsheets, to do lists and top ten lists. 

 

Hey, it’s something.

 

In case you need help in the list department, here are some tips for caregivers going on vacation without their caree. 

 

1.       Find a way to take a break.  Whether it’s for two days or a week or two, it will rejuvenate you in ways you never imagined.  I am lucky enough to have a generous Other Brother who helped with the expenses of my trip.  He lives a couple of hours from us and isn’t involved in the day to day care of Robert but he sure knows how to keep his sister sane.  Between humorous emails, a listening ear and a generous heart, Other Brother does his part.  I am grateful and know how lucky I am. 

 

Finding help for your caree while away can be a challenge.  Kathy, who cares for her Hubby, uses the resources at the Veteran’s Administration to give her an annual break.  Her Hubby served his country and now is living with Lewy Body disease.  Kathy is his full-time caregiver and struggled for years to take advantage of this benefit.  Once she did, she realized it is something she can’t do without.

 

2.       Plan for the Worst.  This sounds morbid but I did make plans in the event Robert needed to be hospitalized (not out of the realm of possibility since he had pneumonia and sepsis in May).  Other Brother was on board with being the contact person in the event of an emergency.   New Home was given instructions to contact Other Brother if Robert landed in the hospital.  My best friend offered to take Robert’s calls if he called the office.  Others offered to be available in the event he needed anything.  New Home was given these contact numbers as well.   

 

3.       Give Replacement Caregivers Plenty of Notice.  I notified New Home and Day Program well in advance of my trip.   In fact, I told them before I told Robert.  Robert wouldn’t remember if I gave him two months’ notice but his facility and day program would be aware of my plans to be away.  This gave me time to discuss solutions to problems that might arise while I was away.  I wasn’t sure if Robert would become surly if he missed three weekends at my house and wanted to prepare all of his caregivers for this possibility.  As it turns out, Robert didn’t get cranky at all but I was happy to have prepared for this possibility. 

 

4.       Create a Care Summary.  Robert lives in a care facility and (knock on wood), of late, I’ve been cautiously happy with the facility.  (Are there enough disclaimers there?)  The new House Manager is communicative, enthusiastic and sincere.  She’s the best thing to happen to New Home.  I notified her as well as the nurse, director and their patient advocate (using the term loosely) of my plans.  I sent them my one page emergency spreadsheet: meds list, contact list, doctor numbers, etc.  This summary sheet includes Robert’s insurance information as well as his Day Program contacts and Other Brother’s contact information.  By now, New Home knows not to change Robert’s medications and understand his quirks so I didn’t need to tell them these things but a new caregiver would benefit from this information.

 

5.       Schedule Meetings and Appointments around the Vacation.  New Home has an annual ISP meeting for Robert (basically, a care plan meeting).  This is always held in his birthday month which is when I had the trip planned.  I asked the meeting not be held while I was away and was assured it would not. When I left on September 2, a date had not yet been set.  When I checked my email on September 3 (from a different country), it was being set up for two days after my arrival back home.  I wasn’t thrilled with this since it meant missing more work after a lengthy absence but I was able to attend and am (although grumbling a bit) grateful they granted my request not to meet while I was away.  Robert also had appointments with his neurologist and general practitioner shortly before I left so I was confident he was healthy.

 

6.       Prepare the Caree.  When it got a little closer to our departure date, I told Robert about our vacation. He wanted to know when I would be gone and his first comment was, “That’s during my birthday.”  (Not helping with the guilt, Robert!).  I assured him we would celebrate his birthday when we returned.  I also arranged for my Mother-in-Law to deliver a cake to his Day Program on his birthday.  House Manager even got him a cheeseburger, fries and Rocky Road Ice Cream on his birthday.   From all reports (including from Robert himself), he had a wonderful day.

 

I reminded Robert about the trip a few times but I also wrote the dates we would be gone on all of Robert’s calendars.  I think this simple act reassured him I would return and he could resume his usual activities of visiting me on the weekends (although I think what he really missed were the chocolate shakes he gets here).

 

7.       Stock up on Familiar Supplies.  Robert is very routine driven and has trouble with change.  I insist on providing all of his personal care items because he has particular brands he likes and is discombobulated if he gets a different brand of toothpaste or shampoo.  This familiarity also provides some comfort to your caree when the regular routine is changed (as it is when you’re off on vacation).  I showed Robert where everything was and notified his New Home of the location of his extra supplies in case he didn’t remember.  I even remembered his blue, clicky pens this time . . .

 

8.       Ease into the Return.  I got back from vacation and resisted the urge to call Robert immediately.  I was confident he was still in good hands and I needed to recover from a long, stressful flight and jet lag.  I gave myself this extra time and called him after a couple of days of being back and saw him at his ISP meeting, taking him to Day Program afterwards.  My delay may seem selfish but I knew I had to ease myself back into my full-tilt caregiving role.  Everyone is different but it’s important to step back and recognize your own needs.  (Preferably while keeping the guilt caged up in another room).  When Robert visited us the weekend after we returned, he was happy to hang out drinking his shake and being on the receiving end of souvenirs (a blue, clicky pen from the cruise ship and a pendant of Mary to go with his gold cross necklace).  My husband and I were happy to have him over and were well refreshed to resume our caregiving role.

 

Do you have any other tips for caregivers leaving on vacation?  I would love to hear your ideas!

Traveling and Caregiving: Yes, There are Similarities

I had an amazing vacation (and can’t thank Other Brother enough for his help in “underwriting” this trip).  If only I could have brought back one of these delicious and artful gelatos for you!  (Who am I kidding - I wouldn’t have because this deliciousness was too wonderful!).  

Addicted to gelato

I did realize, however, I am a terrible traveler.

It’s not that I don’t love traveling because every time I go on a trip I scheme to figure out some way I could do it as a career.  (As long as my entire family could tag along since we all need to try as many flavors of gelato as possible).

I don’t travel often enough to be a confident traveler.  One thing I have going for me, though, is that I’m flexible.  An hour delay on the tarmac in Dallas (to fix a light bulb in the cockpit) wasn’t a huge deal to me.  Hubby and I kept ourselves entertained with an episode or two of NCIS which he had downloaded onto his iPad (his patience with the light bulb issue was a little less than mine).

I have to admit, though, once we finally made it to London and had to make a mad dash to our connecting flight to Rome, I was also cursing the darn light bulb.

While I wasn’t caregiving for Robert during this vacation, caregiving was on my mind.  Caregiving requires a great deal of flexibility too. When I notice Robert is dragging his foot more and is sleepier than normal, I allow more time for appointments or I let him sleep in and keep a sharp eye on him. 

What I’m not so good at when traveling or caregiving is recognizing my own needs.

If I’m thirsty, I often don’t realize it until my mouth is parched and I’m way past dehydrated.

If I’m hungry, it isn't until I start eating a meal at 9:30 p.m. that I realize all I’ve eaten that day was a muffin, half a spring roll and a piece of chocolate (oh that’s healthy!).

Caregiving can put the blinders on my eyes as far as my own needs are concerned too.  Many times, I don’t realize I need a break until I snap at Robert for getting his pajamas on too slowly. 

Why am I really frustrated?  Because I’m tired and want to go to bed but can’t until Robert is dressed, shaved and medicated.

I might get short with Robert if a doctor appointment has run long and I haven’t yet eaten lunch.  Whose fault is that?  Oh, yeah.  NOT Robert’s.

Caregivers are told to “take a break” or “Put your oxygen mask on first.” (My least favorite bit of advice).

Caregivers will be the first to tell you that’s a nice idea but not practical.  If Robert is having a seizure or is in the hospital or actually needs to be getting ready for bed (at his glacial pace), I can’t just stop caring for him because I need a break. 

What I can do is be better about recognizing my own needs before my lack of doing so makes me cranky/hungry/tired/a raving beatch.

I can bring a (healthy) snack to appointments or do some quick exercises while Robert is dressing at bedtime. 

I need to recognize when my bucket is empty and realize I need to refill it on a regular basis (when it doesn’t interfere with caregiving).

I also need to drink a lot more water whether I want to or think I need to!

And I definitely need to eat more gelato . . .

The Faces of Caregiving: Denise, Caregiving.com

As the finale in this series about Family Caregivers and their advocacy work, I’d like you to meet a woman who has been advocating on behalf of family caregivers since 1996. 

Denise M. Brown of Caregiving.com has been mentioned here before and was recently in Sacramento to lead a Family Caregiver Seminar.  Usually, Denise does the interviewing on her internet radio program, Your Caregiving Journey, but Robert’s Sister turned the tables and asked Denise a few questions!

Robert’s Sister:  Tell us a little bit about your advocacy work for caregivers.

Denise:  I advocate for family caregivers in several ways. I provide them an opportunity to share their collective wisdom and stories on Caregiving.com and on Your Caregiving Journey, my Internet talk show. I also create events, such as our Second Annual Caregiving Art Show, to remind them that they remain a creative being, even during a time that seems to sap the life out of them. I encourage family caregivers to see the impact they make in their families and in their communities; they truly disrupt to create change for their family members who need their care as well as for other family caregivers. I also advocate by sharing solutions through the seminars and webinars for family caregivers I lead. Finally, I educate health care professionals and our communities about the needs of family caregivers through speaking engagements and outreach activities.

Robert’s Sister:  What motivated you to create Caregiving.com?

Denise:  Caregiving can be a really lonely experience. I wanted to lessen that loneliness and isolation so I launched Caregiving.com in 1996 and online support groups soon after. In 2008, I added technology which allows family caregivers to blog about their days on the site. I really want the site to be about family caregivers connecting and relating with each other.

Robert’s Sister:  What is the biggest obstacle you've had to face in helping caregivers?

Denise:  Time – having enough time in my day to make the impact I want and family caregivers having enough time in their days to make use of the support available to them.

Robert’s Sister:  How did you overcome that obstacle?

Denise:  I have volunteers who help me; they welcome new members who join Caregiving.com. I want every new member to feel noticed and welcomed. And, I try to make it easy for family caregivers to get what they need from the site, whether they have only five minutes or an hour.

Robert’s Sister:  What changes do you see ahead for caregivers?

Denise:  I think family caregivers will care for several family members at the same time – perhaps parents and in-laws or parents and aunts and uncles. I also think care provided at home will become more intense and sophisticated. And, family caregivers will use technology to monitor care. In essence, the caregiving experience will become more demanding.

Robert’s Sister: What is your biggest wish related to your website and helping caregivers?

Denise: I just wish we could help as many family caregivers as possible. I also am working to create volunteer teams (I'm calling it a Care Squad) which connect with and help family caregivers in their communities.

 

Robert’s Sister:  Is there anything else you want people to know?

 

Denise: I'd like family caregivers to know that, while difficult and terrifying, it's good to reach out for help. I also want them to know that they have a very important story to tell. When you're ready to reach out and ready to share your story, we'll be ready to help and listen at Caregiving.com.

 

Robert’s Sister: How can people contact you if they want to get resources and support when caregiving?

 

Denise:  Feel free to connect with me at Caregiving.com, on Facebook (www.facebook.com/CaregivingSupport) and Twitter (@caregiving).

 

Robert’s Sister:  Many thanks to Denise for her time and her work on behalf of all of us family caregivers.  The beauty of the online work Denise does means it is possible to feel connected with others even if that person is across the country (or even in a different country altogether!).   

 

Please be sure to join me and Denise during our monthly chat about working caregivers.  We talk on the second Saturday of every month on the internet radio show, Your Caregiving Journey: Table Talk. 

The Faces of Caregiving: Laura - Spinal Cord Injury

Imagine the joys of being three months pregnant (okay, leave out the morning sickness part). Imagine the thrill of expecting your first child with your husband of 20+ years.

Laura and her husband, Greg, were experiencing this immense joy when Greg was involved in a horrific motorcycle accident and left for dead.

The strength shown by Laura when this happened to her and she was thrust into the world of caregiving is nothing short of inspiring.

Laura not only tackled the challenge of caregiving but became a devoted mother and terrific advocate for emergency preparedness for the disabled.

Laura recently lost her husband but continues her advocacy work and was kind enough to answer a few questions.

Robert’s Sister:   Tell us about your caregiving situation.

Laura:  When I was three months pregnant my husband was in a hit/run road rage motorcycle accident. It seemed only natural to care for my friend, my husband at that time of 20 years. He had a T-5 Spinal Cord Injury leaving him as a tetraplegic (legs & one arm) with Syringomyelia, Autonomic Dysreflexia and Complex RegionalPain Syndrome. He recently went to "dance with the Lord" on July 1, 2012.

Robert’s Sister:  Tell us a little bit about the diseases/disorders your husband faced.

Laura:  He required 75% assistance throughout the day to transfer, use the restroom, retrieve things that had been dropped on the floor and had pain so severe that it can cause the entire upper body to spasm uncontrollably. We had to watch for lumps on the back which was a sign of spinal cord fluid back up. We also had to watch for signs of body shutdown which was (high x (blood sugar + temperature + blood pressure)) = body shutdown. He escaped it four times.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Laura:  Ignorance. From day one we were told we couldn't continue to be together, that we wouldn't survive, that it was too tough, that people with disabilities got everything (even financially) including accommodations in emergency management design (of which there weren't).

Robert’s Sister:  How did you overcome that obstacle?

Laura:  Those obstacles – don't listen to naysayers!  They also say that marriages don't survive major family changes within only a few years. Within six years we had a spinal cord injury, a baby and move from one state to another!  We also continued to smile!  But we fought our challenges by getting active in the community via emergency management, through politicians and through writing.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Laura:  In Florida we were involved with Spinal Cord support groups, Center for Independent Living, and County Emergency Operation Committees. In Georgia, I became involved with the Gwinnett Emergency Preparedness Committee, a National Emergency Preparedness Committee for the National Center for Independent Living Centers, the Gwinnett Emergency Assistance Committee, wrote essays for two (soon to be 3) Caregiving.com books, blogged on Caregiving.com, worked with the local Independent Living Center, and gave presentations in both states mostly on emergency preparedness.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Laura:  My husband and our daughter. I was very frustrated that people with his level of medical challenges were set aside and ignored in community plans and furthermore were not acknowledged as being able to participate in parenting. It was troublesome that the only way one could find out information needed for assistance programs was to already be "in the know" and that is pretty much impossible when there are no warnings as to when a life changing disability occurs.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Laura:  I have written many times in Caregiving.com and submitted essays for them. I challenge people in emergency management design by participating in any community meeting that I can. I freely and as often as I can give presentations, interviews and am planning on writing a book about the last six years.

Robert’s Sister:  Is there anything else you want people to know?

Laura:  To fight for your beliefs, you must believe in your fights. To succeed you must get others to believe too! 

If I can simply get my foot in the door and cause someone to think about something I said, then I consider it a success. Because thinking leads to discussion, which leads to debate, which leads to calls for change, which brings change about. Change can't come without thinking about it first. People call me an expert. I'm not. I am just a tenacious student who thinks in terms of family first and challenges second.

Life is about choices. Good/bad; positive/negative and yes/no. But at the end of the day, what decision are you willing to lay your head on your pillow with?!

Robert’s Sister:  How can people contact you if they want to learn more about?  

Laura:  On Caregiving.com, look up The Roaring Mouse. On Facebook I can be found at www.facebook.com/Laura.George.3532 or www.facebook.com/GetReadyGwinnett. On Linked In via Laura George or via email at educateandadvocate@gmail.com. At www.getreadygwinett.org, you'll find a dedication to my husband there.

Robert’s Sister:  Many thanks to Laura for her time and continued advocacy work even after losing her husband.  I’m excited to see the change this dynamic woman will bring about!

Next, I am excited to turn the interviewing tables on Denise M. Brown, creator of Caregiving.com. Once a month, I join Denise on her internet radio show, Your Caregiving Journey, Table Talk to discuss working caregivers but this time, I get to interview Denise about her advocacy work for caregivers.

The Faces of Caregiving: Jane - Pulmonary Arterial Hypertension

In this series on Family Caregivers, we have met two people who care for their spouse and a woman who cared for her mom. However, caregivers are a diverse group and care for all sorts of family members or even friends.

Today, I’d like you to meet a devoted mom who learned when her daughter was 15 years old there had been an undiagnosed heart defect which caused her daughter to develop pulmonary arterial hypertension and Eisenmengers syndrome.

After having her world turned upside down, Jane fiercely cares for her now 17-year-old daughter and manages to also successfully maneuver through the typical trials of raising a teenager.

Robert’s Sister:   Tell us about your caregiving situation.

Jane:  I am a caregiver for my 17-year-old daughter, Nicole. In January 2010 she was diagnosed with a congenital heart defect, pulmonary arterial hypertension and Eisenmengers syndrome.

Robert’s Sister:  Tell us a little bit about the diseases Nicole is facing.

Jane:  VSD (ventricular septal defect) is a congenital heart defect meaning that Nicole was born with this. A VSD is a hole in the heart between the two lower chambers of the heart (the right and left ventricle). This defect allows blood to flow from the left ventricle to the right ventricle (left-to-right shunt).

Eisenmengers syndrome is a rare, progressive heart condition that has developed because of the VSD and the lack of diagnosis of the VSD. It is the reverse shunting of the heart (right-to-left).

Pulmonary arterial hypertension is high blood pressure in the lungs which isn't the same as the blood pressure in the body.  The arteries in the lungs begin to close up making breathing difficult.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Jane:  I think for me, the most difficult part is the loss of the hopes and dreams for my child. She can't have children of her own and her future is uncertain. It is also difficult for me to watch her struggle with this same loss. This disease (PAH/PH) is rare and progressive and there is no cure. The prognosis isn't always good.

Robert’s Sister:  How did you overcome that obstacle?

Jane:  I don't think I have over the obstacle at all. I think I deal with it every day. I think as far as the fear goes, education is power. I educate myself.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Jane:  I am involved in the local PH support group. I'm also involved in the Pulmonary Hypertension Association (PHA) and participate in several online groups and telephone support groups through PHA. I am also a member and a regular blogger on Caregiving.com which is a lifesaver for me and I am honored that I am part of this community. I have met wonderful friends through this site.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Jane:  I think it is because Nicole's illness PAH/PH is so rare and there isn't much know about it. PHA is dedicated to research and support. I don't want another parent to feel as alone as I did after her diagnosis. I don't want another parent to have the pain of finding out their child has a congenital heart defect that went undiagnosed until they are so sick like Nicole or they collapse on a football field and die. I want any caregiver to have support as it is a very tough and stressful job.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Jane:   I'm very active on Facebook. I have a blog. I have spoken several times (one of them being at a United Therapeutics marketing event in Hawaii). I spoke at a dinner about one of Nicole's medications. I educated other mom's about the disease at a homeschooling meeting. I am involved at Caregiving.com and  I am trying to be more active in the local PH support group. I also would love to see a local caregiver support group in my area.

Robert’s Sister:  Is there anything else you want people to know?

Jane:  Yes, always listen to your gut. If you feel and/or believe that something is wrong then make this known. If the doctor doesn't take you seriously, look for another one who will. Also, always ask questions and don't stop until you understand. I don't always take this advice myself but I am working hard to achieve this.

Robert’s Sister:  How can people contact you if they want to learn more about the diseases Nicole is facing?  

Jane:  I have my own blog called "A Day in the Life."  I am also on Facebook and you can find me by Jane Northrop or by my email address jbones1961@cfl.rr.com. I am also on Twitter as @phmomma21.

Robert’s Sister:  Many thanks to Jane for her time and willingness to share her experiences! 

Next, we will meet Laura, who cared for her husband who suffered a severe spinal cord injury after he was involved in a horrific motorcycle accident.

 

The Faces of Caregiving: Bette - Stroke, Vascular Dementia

In this series on Family Caregivers, Bette is a woman who defines perseverance and tenacity. She was told she shouldn’t care for her mom in her home more times than she can count (and that was from close family members).

Unfortunately, it is pretty common to be met with resistance when taking on caregiving. It also is very common for caregivers to ignore the naysayers and continue on in spite of the negativity.

That is a form of advocacy in itself.

Bette persevered and cared for her mom for over ten years while also raising three children with her husband. Bette answered a few questions for us about her caregiving experience.

Robert’s Sister:   Tell us about your caregiving situation.

Bette:  I cared for my mother for ten years. She had a stroke in 2002 and five years ago she was diagnosed with vascular dementia. For the first year, we tried to get her back home; she wanted so badly to remain independent in her own home. After several falls, we both knew she would be safer with us and that it would be easier for her.

Robert’s Sister:  Tell us a little bit about the dementia your mom faced.

Bette:  My mother passed away in July of 2012. Vascular dementia and a series of strokes were the cause of her death. Slowly, dementia took my mother’s ability to care for her most basic needs.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've faced?

Bette:  Vascular dementia was our biggest obstacle. Dementia is so unpredictable, it was difficult to always plan for her needs. We have three children, so the unknown created obstacles to work through with them as well. Another obstacle was the routine of the day. There were times the routine felt so heavy.

Robert’s Sister:  How did you overcome that obstacle?

Bette:  Through the coaching of Denise M. Brown of Caregiving.com, I learned to confront one obstacle at a time; take one moment at a time. During the times that I would skip ahead in my mind or in doing, the confusion was increased.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Bette: Caregiving.com. I am so grateful for the support and resources offered there to myself and my family. Because of this support, I was able to begin a support group for Family Caregivers in our community.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Bette:  In 2009, I went through a very challenging time. Through Caregiving.com and the resources Denise Brown provides, I was able to feel better – to feel supported. I want to be able to share because I know other family caregivers can feel better too.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Bette:  In addition to the support group, I was able to help schedule Denise Brown of Caregiving.com to speak in our community. Most recently, I helped organize, and participated in a booth at Ohio State, sharing Caregiving.com there. [Note from Robert's Sister:  Bette was also instrumental in bringing Caregiving.com to Sacramento for a seminar earlier this summer.]

Robert’s Sister:  Is there anything else you want people to know?

Bette:  It will be okay. What you are doing makes such a difference – both for you and for your caree. I encourage you to communicate with others about your story and keep communication open between you and your caree.

Robert’s Sister:  How can people contact you?  

Bette: I blog on AfterGiving.com and am also on Twitter using @bettebythesea and Facebook as Bette Derrah Scott.

Robert’s Sister:  Many thanks to Bette for her time and willingness to share her experiences. Thoughts of support and sympathy continue to go out to Bette while she deals with the recent loss of her mom.

Next, we will meet Jane who cares for her teenage daughter, Nicole, who developed Pulmonary Arterial Hypertension and Eisenmengers Syndrome due to a congenital heart defect which went undiagnosed for several years.  

Epilepsy Facts and Resources

In support of the first annual Talk About It Epilepsy weekend, I’d like to share as many epilepsy facts and resources as possible.  This information can also be found as a downloadable document on the right side of this post. 

Epilepsy affects one in 26 people in their lifetime so chances are this flyer will come in handy for either you or someone you love or know. 

What is epilepsy exactly? 

·         Epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    Source: Multiple

·         Almost 3 million people living in the United States and 50 million worldwide live with epilepsy. Source:  Epilepsy Foundation

·         500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

·         Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

·         Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

·         It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

·         Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  Centers for Disease Control & Prevention

·         Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

·         One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

·         Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

·         In over 30% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

·         In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

·         Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com

EPILEPSY RESOURCES
 

The Epilepsy Foundation.   The Epilepsy Foundation is a great place to start in the search for information about epilepsy.  Their website includes information about epilepsy, seizures, research and much more.  The Epilepsy Foundation website has support communities for both those living with epilepsy and those caring for someone with epilepsy as well as information for educators and advocates. 

Epilepsy Therapy Project.  Another excellent resource!  Their mission is “to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.”  They have information on innovative treatments and research as well as an online support group. 

Talk About It Organization.  Greg Grunberg  (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy.  In an introduction on the website, Greg proudly calls his son his hero.  This terrific website has many people you will likely recognize talking about epilepsy and different aspects of it, including first aid for seizures, employment, how to discuss epilepsy in your family as well as important information about epilepsy medication.  

CURE: Citizens United forResearch in Epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the CURE Epilepsy organization because their daughter has epilepsy.  This organization does a fantastic job spreading awareness and education and raising money for epilepsy research. 

National Association of Epilepsy Centers.  If researching treatment centers or epilepsy specialists, the National Association of Epilepsy Centers can help with the search.    

PAWS With a Cause.   I can’t leave out my “pet” organization!  PAWS With a Cause provides Service Dogs trained to deal with seizures as well as other medical conditions.

Purple DayOrganization.  Who doesn’t love purple?  According to their website, “Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy's idea which is now known as the Purple Day for epilepsy campaign.”

Many of these organizations also have their own Facebook pages providing additional information and most can also be found on Twitter.  Both provide wonderful opportunities to connect with others in a similar situation. These real connections will help combat that pesky troublemaker, isolation. 

Let’s Talk About It!

Robert: What Having Epilepsy Means to Me

September is interview month at Robert’s Sister, apparently. The Family Caregiver Series will continue after we break this weekend to Talk About It!

Talk About what?  What in the world are you Talking About, Trish (and why are capitalizing letters in the middle of the sentence??)?

Robert’s Sister is participating in the Talk About It Foundation’s  first annual Talk About Epilepsy weekend.

Posts this weekend will focus on epilepsy and we’re kicking off the weekend with an interview with Robert.  (Yes, I admit it! I bribed him with a chocolate shake).  Robert has answered reader’s questions before which focused on his seizures and can be read here and here, but this time, the questions come from his tough, older sister.

The purpose of this interview is more about a big sister taking a break from the day to day tasks of worrying about medications and care facilities and the supply of Rocky Road Ice Cream to get to know her little brother a little bit better.

A couple of sips of chocolate shake and Robert is ready!

Robert’s Sister:   How does it feel to have epilepsy?

Robert:  I don’t want to have epilepsy.  I want it to stop completely.  That’s one of the main reasons why I had the brain surgeries. 

Robert’s Sister:  How did your family treat you when you were growing up? 

Robert:  They treated me pretty good.  I tried every medication but nothing was ever able to stop me from having seizures.  They kept an eye on me.

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 

Robert:  I had a lot of nice friends when I was in high school.  A lot of them were handicapped also and we went to gym.  In the back room we were able to play pool and I even taught some of the guys how to play pool.  Some didn’t know how to play right so I taught them correctly.  They really liked it too and thanked me a lot for that too.   My classmates were nice to me and nice to each other.

Robert’s Sister:  Do you think the medications affect how you feel?

Robert:  It doesn’t hurt me any.  When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood.  I thank God for that.

Robert’s Sister:  How do you feel about having brain surgeries?  Do you think they helped? (Note: Robert has had two brain surgeries)

Robert:  The brain surgeries did help a lot. The first one was January 4, 1990.  I remember I was awake during the brain surgery.  The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth.  He had me move my fingers and toes. 

Robert’s Sister:  What made you want to be involved in research studies?  (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)

Robert:  To see if they would stop me from having seizures or not. 

Robert’s Sister:  How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)

Robert:  I felt like Dad didn’t want to help me.  I believe I did the correct thing. 

Robert’s Sister:  How do you feel about living in a care facility?

Robert:  It’s okay.  The people are nice there.

Robert’s Sister:  What is your favorite memory? 

Robert:  I like to remember Mom.  I still remember her in my mind.  It’s too bad she had cancer in her stomach and passed away early.  (Our Mom passed away from liver cancer in 1999 when she was only 56 years old). 

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

Robert:  Yes.  I remember when I was 15 I was at Dad’s house in Modesto.  Dad took me to a friend’s house and we went to the Jacuzzi for a while.  I told him I was going to do a couple of laps in the pool and went to the deep end.  A seizure hit and I fell in.  My friend saw me lying at the bottom of the pool and told my dad.  Dad dove in and he was still in his work clothes.  He dove in and pulled me out.  The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.  

Robert’s Sister:  What do you think that reason was?

Robert:  To help other people. 

Robert’s Sister:  What do you want people to know about epilepsy?

Robert:  Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also.  I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).

Robert’s Sister:  Is there anything else you want to say?

Robert:  I thank God for saving me in everything so far. 

Robert’s Sister:  I have one last question and it’s a really hard one.  You better take an extra drink of your shake for this one.  Who is your favorite sister?  J

Robert:  (Laughing) – You!  (More laughter)  No, George Washington!  Only joking!  (Still laughing)  You’re my favorite sister.  My only sister also.  (Robert's Sister: Now, I'm the one laughing!).

Many thanks to Robert for answering my questions!

If you have a comment or question for Robert, please leave it in the comment section below.  Tomorrow we will continue our participation in the Talk About It Epilepsy Weekend and will post epilepsy facts and resources.