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.