Wednesday, August 29, 2012

Finding Forgiveness and a Way to Help

This year I have had the honor to edit the stories of caregivers to create a series of books for  The books are a fundraising project for the CareGifters program which sends $500 to a caregiver in need as often as possible.

Many, many caregivers have been helped with a variety of needs and it is extremely rewarding to be a part of this project.

The most recent book is about forgiveness and the stories are from people in varying stages of forgiveness. Beautiful photographs are sprinkled throughout the book amidst these poignant stories. I’m sharing one of my essays on forgiveness here as I have struggled with forgiving my dad for not choosing treatment for his kidney failure. 

If you would like to purchase a copy of the book (the eBook is only $5), please visit here.

You can be confident your purchase of the book will go toward helping another caregiver who doesn’t know where to turn.  The most recent CareGifters recipient was extremely stressed because she had been diagnosed with cancer and needed surgery yet was a full-time caregiver for her husband.  She didn’t know how she could afford to hire care for her husband while she was in the hospital.  This money allowed her to get the help she needed giving her peace of mind before her surgery.

My own stories of forgiveness (Before Forgiveness and Letting Go . . . Finding Forgiveness) are just two of many stories in the book.   

An excerpt from "Before Forgiveness" -

"Unfortunately, his paranoia stretched to include doctors and other health professionals.  When he was very sick he would see a doctor to get pain pills but wouldn't follow their advice about his kidney failure.  He was bluntly told if he didn’t go on dialysis his kidneys would fail and he would die within six months. 

Several years prior to this he had a terrible bout of Bladder Cancer for which he was treated with chemotherapy, radiation and finally, removal of his bladder and prostate.  Dad became convinced the surgery was unnecessary and the doctors only removed his bladder and prostate to remove him from the dating pool so they would have less competition. Right. Because the right to date is squeezed in just before the "do no harm" sentence in the Hippocratic Oath. 

When told of the kidney failure, he refused to see an oncologist to see if his cancer had returned to infiltrate his kidneys.  He had extreme back pain and only wanted pain pills. He refused to connect his back pain to his failing kidneys.

He wouldn't let me attend his doctor's appointments because he knew I'd force him into treatment and he said he didn't want to be mad at me. 

He steadfastly refused dialysis because he didn’t want to live hooked up to a machine.  He told me the only way he would ever allow dialysis was if he was in a coma and going to die that very day.  He told me I could make that decision if it came down to it.  I told him I didn't think that dialysis would work once it got that dire and he should talk to his doctor about it and not put me in such a position."
An excerpt from "Letting Go . . . Finding Forgiveness" -

I have a difficult time with forgiveness but not because I’m an unforgiving person (really, I’m not).

It’s because I believe people do the best they can with what they have – most of the time.  It’s not really up to me to wave a magic wand over a person’s head and say in my most regal voice, “You’re forgiven, good Sir.”

I don’t know that I have any right to forgive someone for something they did that, while hurtful, was unintentionally so (most of the time). 

Another piece to this forgiveness quandary I am in is that it is closely tied to letting go. 

Me, who envisions a future involving several cats and boxes and boxes of the kids’ drawings from pre/elementary/middle/high school as well as a good amount of pictures and books.  

Oh, wait.  That sounds eerily like my present.

Okay, so I may have a letting go problem.  Maybe. 

If I have a letting go problem do I also have a forgiveness problem?

I don’t feel the need to forgive my parents for the decisions they made when I was growing up.  My brothers and I were loved and our parents were trying the best they could.  They were young and went through mental health issues (depressions, bipolar disorder). 

I’ve long since accepted them for who they were.  They didn’t intentionally hurt us kids so there’s nothing to forgive.  Somehow, I can even let go of the difficulties depression brought into our lives, probably because it was something Mom worked to overcome. 

She eventually stopped trying to give up.

Recently, I was listening to Anna Stookey who is a regular on the internet radio show, Your Caregiving Journey with Denise M. Brown.  Anna and Denise were talking about letting go.

A comment sent a jolt through me:  it is perceived as a failure when we let go."

I hope you are able to check out the book.  I'd also love to hear your own stories of forgiveness so please feel free to share them in the comment section. 

We all have stories to tell!

Thursday, August 23, 2012

Keeping on our Toes

When enjoying lunch or dinner, in the back of my mind, I know that Robert could have a seizure while he eats or while walking to the dining room table or while praying (he went through a phase where that happened frequently). 

The family laughs and talks and Robert enthusiastically tells us the food is delicious (no matter what we are eating) but in the back of my mind (and that of my family) is that Robert could have a seizure at any time.  That thought is always there.

When Robert slowly moves from room to room with his walker, I hover to be sure he makes it to his destination without incident.  (A caregiving mom I know describes herself as her son’s “shadow” because she does the same thing). 

Seizures come without warning so we have to be on our toes.

After one dinner earlier this summer, Robert had a seizure and while I popped up to get the seizure log, Daughter  held on to his plate since Robert seemed to have a death grip on it and we were afraid the plate and it’s yummy contents (no doubt a cheeseburger and fries), would end up on the floor.  (I’ve told you he likes food, right?). 

After another dinner earlier this summer, I encouraged Robert to spend some time outside.  It was a beautiful day which we couldn’t pass up.  Robert negotiated his way through the sliding glass door and sat to do his word search puzzle while Daughter and I took turns taking pictures of the three dogs (one was a loaner) roaming around the backyard. 

Ahh, so peaceful. 

It was time for Robert to get ready for bed so Daughter took the dogs in the house and Robert finished the puzzle he was working on and we stood to go inside. 

As I walked in front of Robert to open the back door, I glanced over to see Robert starting his familiar slump over his walker. 

Uh oh.

I jumped over behind him so he wouldn’t fall and thought the seizure was over so let up a bit. He immediately slumped even further and his legs gave out. 

I’m only 5’ 2” (okay, 5’ 1 ¾”) but have been able to catch Robert before, especially when I have time to position myself for his weight (it’s all in the legs, people).  I called for help (just in case) and Hubby and Daughter appeared on the patio in record time (they keep on their toes, too, apparently). 

Before they were able to help, I had gently laid Robert down most of the way to the cement but he ended up with a scrape on his elbow and palm.  It was a harder landing than I had planned for but much better than it could have been.  Once Robert was awake again, he was wobbly on his feet but with the assistance of Daughter and Hubby, managed to get inside the house and start his bedtime routine.

A Band-Aid and little bit of Neosporin later and his elbow was as good as new.

Robert's scrape has long since healed but having a seizure while on the patio is just part of what might happen during a beautiful summer evening.  Enjoying the sunshine and the dogs and time with family cannot be undone by also having to be on our toes.

Wednesday, August 15, 2012

You Said What to a Caregiver?

Sometimes I am amazed by the things people say.

I have to believe they mean well.  I want to believe what they were thinking was much nicer than what came out of their mouths.

Or maybe they just didn’t realize they said these things out loud.

In case you need some help in knowing what not to say to a caregiver, here are a few things to avoid and a suggestion about what to say instead.  It might be hard to believe but all of these were said at one time or another to me, my husband or friends who are caregivers.

What People Say:   “Your marriage will never survive.” 

Ouch.  (This, by the way, appears to be one of the most common things said to a caregiver.)

A friend and his wife recently made the decision to modify their home so the wife’s ill father could live with them.  Upon hearing this, several of their well-meaning friends (?) immediately predicted the demise of their marriage.   

Gee, thanks.  This young couple agreed early on (between themselves, thank you very much) they would take care of their parents when the time came so I think they’re pretty solid.

What to Say Instead:  Instead of thinking their relationship is so fragile it couldn’t possibly survive caregiving, how about saying, “When is a good time for me to bring my tools and come help build the new room?”

What People Say:  “Do you know how much stress this is going to put on you?” 

What??  Caregiving is stressful?  Who knew?

My husband has heard this one from family members concerned about him caring for his mom and Robert. 

Yes, thank you, we do have an idea about how stressful caregiving will be.  I also know it will be exceptionally rewarding and, after much thought and consideration, know this is the right decision for us. 

What to Say Instead:  “This sounds like a stressful undertaking but have faith you’re up for the job.  Can I come over for a few hours to give you a little break?“

What People Say:  “I don’t see anything wrong with your caree.” 

Deep breath.

A friend who cares for her husband who was diagnosed with Mild Cognitive Impairment at the young age of 55 years old has heard this more times than she can count.

Apparently because her husband doesn’t have any visible signs of disability, people think it is okay to be dismissive of his diagnosis.   As if this caring wife and mother of a teenager doesn’t have enough to deal with in managing her husband’s medications, adjusting to his having to retire early, his depression from the diagnosis and his impaired memory, she has to justify the “unseen” diagnosis to these misguided people.

What to Say Instead:  “It must have been difficult to hear that diagnosis.  Do you want to get coffee and talk about it?”

What People Say:  “When your daughter is 18 you’ll have to make her do everything herself.” 

A friend of mine has a daughter who lived with a heart defect which went undiagnosed until she developed a related, life-threatening illness at 16 years old.

First, several doctors have already failed this young girl due to either their haste or their incompetence.  She will always need her mom’s assistance managing her numerous medications, doctor visits and therapy appointments.  Telling someone how to manage their loved ones care (in a judgmental way, no less) is probably the least helpful thing a person can do.  This illness has been devastating to this family and they are managing the best anyone can expect.  They need loving, gentle support – not meddlesome edicts.  Doctors have failed them; they don’t need their friends and family to fail them too. 

What to Say Instead:  “You’re doing such a good job with your daughter under such trying circumstances.  Approaching adulthood is difficult for any parent and teen.  Can I help with any paperwork in order to make the transition a little easier for the two of you? Or maybe we could go see a movie for some fun?” 

For the most part, people are supportive and want to help.  Sometimes, their mouths just start working before their brain kicks in. 

Are you a caregiver?  What has been said to you that made you shake your head and what would like to hear instead? 

Saturday, August 11, 2012

AB 2039 – Link to Testimony

Today on the internet radio program, “Your Caregiving Journey, Table Talk,” I talked with Denise Brown about testifying in front of the California Senate Appropriations Committee, my new shoes and getting through the fear to actually testify (notice I didn't say "overcome"). 

There was a request in the chat room of the program to see the link to the testimony and for the text of what I said so would like to share both.  Keep in mind, the committee wanted everyone to keep their testimony brief and to focus on the impact to business.  (You know how difficult it is for me to write something short!).   Here is the link to the session (AB 2039 is introduced around the 1:51 mark) and below is the text of what I said when I testified.  In the video, you'll see me still editing what I was going to say while the person next to me spoke in favor of the bill!

I think with each speaking experience, it will get easier and I'll do a little better each time.  I’m pretty sure I will still be terrified but at least now I know I can do it. 

And, yes, I do plan to buy a new pair of shoes for each experience! 

Here's the text of my testimony:

"Thank you, Madame Chair and Members of the Committee.  My name is Trish Hughes Kreis and I support of AB 2039.

I care for my disabled brother, Robert who is disabled due to lifelong intractable epilepsy and I also manage a local law firm.

Unfortunately, many family caregivers have to choose between their job and caring for their family member because they don’t have protected leave due to the limited definition of family.

As an employer, I’ve managed  leaves of absences and know that unpaid, protected leave has not placed an undue burden or cost to our business.

As an employer, I also see how we benefit from providing flexibility to our employees.  The loyalty an employee shows when we work with them during difficult family situations is invaluable.  This flexible approach has actually saved us money by reducing turnover costs.

I want to do what I can to ensure working caregivers are able to take protected leave to care for their family member who might not fit in the confines of the currently limited definition of family under CFRA but I also want to do what’s best for our business.

It is my belief AB 2039 would not be an undue burden on the employer and would greatly help family caregivers stay in the workforce which can only strengthen our struggling California economy.

Thanks very much to Assembly Member Swanson for this bill and thanks very much for your time."

I'd love to know what you would testify about if asked and what you would say. Please share your cause in the comment section.

Wednesday, August 8, 2012

AB 2039 – New Pumps for the Senate

AB 2039 was heard in the Senate Appropriations Committee on Monday.  I was asked by the Labor Project for Working Families to testify at the hearing which, you know, pretty much sent me into apoplectic shock. 

I was terrified.

No, really.  I am not overstating it. 

As a Legal Administrator, I have had to grow into my role of speaking in front of groups of people.  It does not come easily. 

I had flashbacks of me in middle school and high school with palms sweating, a face turning all shades of red (which has been the only thing to ever cover up my freckles) and tripping over my words.  That is, once I finally got them to come out.

Yeah, you could say I was on the shy side.

As an adult, I speak in front of small groups of people at work and still get nervous every time.  I don’t blush as often, my palms stay fairly dry and I’m able to put a coherent sentence together but I’m still nervous.

The thought of standing in front of a senate committee and speaking – well, I had to think about it. I finally realized that even though I wasn’t sure I could do it, I would regret it forever if I didn't try. 

My I'm-Testifying-In-Front-of-A-Senate-Committee Shoes
I am passionate about expanding the definition of family under CFRA and if telling my story as both a working caregiver and an employer will help, then I would testify.

To calm my nerves, I bought a new pair of pumps. 

Shoes are my comfort food.  (Ice cream, cookies and French Toast are also my comfort food but at least shoes don’t have any calories).

My daughter shopped with me and we found the perfect pair of pumps.  I felt I could walk into the Capitol building with confidence in these pumps.  I knew I could stand in front of the Appropriations Committee with these sensibly priced, yet cute shoes.  I thought maybe the new shoes would keep my mind off of my fear.

The hearing room was packed so I stood with representatives from the Labor Project for Working Families as well as the Legal Aid Society.  There were several bills being heard which gave me a great opportunity to see how the process worked.  I am fascinated with the government process so relaxed (a bit) and enjoyed the learning experience. 

Once seats opened up, we sat down and I worked on editing my prepared statement.  I had brought several copies with me which allowed me to revise my statement several times. 

By several, I mean at least a couple dozen.

It was finally time for AB 2039 to be presented by Assembly Member SandrĂ© Swanson so I stopped revising and listened. 

This older gentleman, who uses a cane to get around, has worked to expand the definition of CFRA since 2007.  He is dedicated to helping families and it was a pleasure to listen to his passionate plea for his bill.

The people who came to speak either in support or against proposed legislation sat at a table in front of the committee members who were seated in a semi-circle in front of the table on a raised platform.

I sat in front of a microphone (and apparently a camera for the feed to the audience although I couldn’t tell where the camera was). 

As I sat waiting for my turn, I could literally hear and feel my heart beating in my chest and thought what a waste of new pumps if my heart goes out before I get a chance to speak!

Finally, it was my turn and I started reading my prepared statement (my typed page with handwritten edits on it, of course). 

After tripping over my own name (yep, I did), I settled into the comfort of my words and the passion I felt for the cause.  I looked at Madame Chairperson Kehoe and the other members of the committee as I talked and wondered who among them was also a caregiver.

I didn’t even blush.

Once I finished my statement, I thanked Assembly Member Swanson for his bill and the committee members for their time and walked my pumps back to my seat in the audience. 

A huge wave of relief came over me as I simultaneously wanted to jump up and down screaming: I did it! I did it!  I wonder if the pumps can handle a lot of jumping??  

A member of Assembly Member Swanson’s staff came over to thank me and the Legal Aid Society attorney for testifying. 

I assured her it was, ‘No problem at all.”

We listened as the bill was put in “suspense” which means there is more work to do.  Letters to the committee members can still help so please send in your letters!  Contact information for the members can be found in this post.    

I certainly hope AB 2039 eventually gets through this committee but no matter what happens, I have my pumps and am ready for my next visit to the Capitol. 

Sunday, August 5, 2012

Why I Support AB 2039

I have asked for your help in getting AB 2039 to pass.  I have written about it since last year and have steadily beat the drum to get this bill moving along and through the California Senate. 

I even agreed to testify in front of the Senate Appropriations Committee.  (Yikes!)

Since that scares the you-know-what out of me, it’s fair to assume this is important to me. 

Why am I advocating for the expansion of the definition of family under the California Family Rights Act?

It isn’t just because I am a working family caregiver who cares for a brother instead of parent, spouse, child under the age of 18 or dependent adult child.  Selfishly, it is one reason but not the only reason.

It isn’t just because I am a legal administrator and have managed absences (even long-term absences) without harm or excessive cost to the business. 

It is because according to the National Alliance for Caregiving, there are 65 million caregivers in the United States and over 70% of them are employed at some point in their caregiving experience.

That’s more than 40 million working caregivers.  Many of them are caring for siblings, in-laws, grandparents and adult children (who are not dependents).  Many of them want to continue in their jobs but may have to choose between their job and caring for their family member.

Caring for these family members is not protected under FMLA or CFRA.

The FMLA/CFRA definition of family is narrowly defined in a time when family dynamics have changed and family caregivers care for a wide variety of family members.  Narrowly defining family limits the ability of millions of caregivers to take a protected leave of absence while caring for their family member.

AB 2039 expands the leave protection under CFRA for these family caregivers who are trying to work and be productive members of society while also caring for a loved one.

People like me who care for a sibling.

People like one of my employees who will soon be caring for his father-in-law.

People like an employee who recently cared for her grandfather.

People like an employee who provided long-distance care to her sister.

I know first-hand how difficult it is to juggle caregiving and working.  I want to do what I can to ensure these employees are able to take protected leave to care for their family member who might not fit in the confines of the currently limited definition of family under CFRA.

I want that protection for myself and for all the other working family caregivers in California. 

What will I give my employer in return?  A healthy dose of loyalty, hard work and gratitude.

Write letters and fax them to the Senate Appropriations Committee so the bill can pass out of the committee and go to the full Senate. 

Then we’ll work on getting AB 2039 through the Senate and to the Governor. 

In the meantime, wish me luck tomorrow and get those letters in! 

Friday, August 3, 2012

AB 2039: Time for More Letters of Support

I think of AB 2039 as the Little Engine that Could (one of my most adored children’s book).   When my daughter was a baby, I came upon a plaque with the phrase “I think I can, I think I can” and hung it in her room. 

She still has that plaque.

I believe if we think we can do something we can do it!   

This bill to expand the definition of family under the California Family Rights Act (CFRA) had slim hopes of making it out of various Assembly committees.

Each time, AB 2039 passed out of those committees and made it to the Assembly floor where, with fingers and toes crossed, we hoped it would pass. 

It did!  (I think I can, I think I can!)

This little engine made its way to Senate Committees.  It passed the Labor and Industrial Relations committee and was sent over to the Appropriations Committee which meets Monday, August 6.

If it passes out of that committee, it goes to the full Senate.

We’re getting so close! 

The Labor Project for Working Families has been working diligently through their California Work and Family Coalition Action Center to get this bill passed each step of the way.  They’ve asked me to testify in front of the Appropriations Committee on Monday to explain why expanding the definition of family is important to me as a caregiver to my brother.  Having the perspective of both caregiver and employer, I can see both sides of this issue.

The caregiver side of me wins out so I am strongly in favor of the expansion of the benefits this bill provides to family caregivers. 

Testifying in front of a Senate Committee?  Oh boy!

The painfully shy (yes, it was painful), 12-year-old girl in me turning bright red because she was terrified to read a report in the front of her classmates silently screamed “No!” when first asked. 

Then I realized this cannot be about my past fears terrors. 

This opportunity is about recognizing how families are changing and making sure the law keeps up with those changing dynamics.  This opportunity is about protecting caregivers who are doing a difficult job in caring for a family member which is made even more difficult if they are working a job.  It’s an opportunity to help those family caregivers not yet given protected leave because they don’t care for the current narrowly defined version of family.  

How narrow?  The current definition of family doesn’t include siblings, grandparents, parents-in-law or adult children who are not dependents. 

This is an opportunity I can't pass up just because I am terrified. It is too important. I’m setting aside my 12-year-old self and testifying on Monday.  (I think I can; I think I can!) 

In the meantime, please send letters of support to members of the Senate Appropriations committee at the following fax numbers.  (A sample letter can be found on this page).  

Chair Senator Christine Kehoe:  (916) 327-2188;
Vice-Chair Senator Mimi Walters: (916) 445-9754;
Senator Elaine Alquist:  (916) 324-0283;
Senator Bob Dutton: (916) 327-2272;
Senator Ted Lieu: (916) 323-6056;
Senator Curren Price:  (916) 445-8899;
Senator Daryl Steinberg:  (916) 323-2263

Let’s get this little engine over the hill – or at least to the full Senate floor!

I think I can; I think I can!