Thursday, March 31, 2011

Taking Charge Part 2: Three Steps for Creating a Medical History

If you feel aggravated when having to answer the same questions when moving from doctor to doctor, you’re not alone. But even in what seems like a waste of time, there is a bit of logic one doctor took the time to explain. He was the third doctor we’d seen in one morning on the way to a specialist. 

      “We do this to combat human nature.  People forget,” he said.  He pointed out that in his interview with us, he received a detail of Mom’s medical history we’d not put on the form he had in front of him.

Point made, lesson learned.

Having a detailed medical history in hand will help reduce the stress of answering repeated questions or filling out forms because the answers come more easily when have gone through the process of digging into the past yourself, on your own time. Writing a medical history down before there is a medical crisis, or at the onset of a new treatment, is even better.

Step One:
Break down your medical history into different areas (try using a separate sheet of paper for each heading):

Asking questions about
medications your loved one is taking
or has taken is a good way to start
breaking down a  medical history.
·         Medications:  Start with your current list of medications. Write down the condition you take it for, the doctor who prescribed it, and how long you’ve been taking it. Now take a step back in time. Were any of those medications a replacement for another? Why the change? Once you get back to the start of a medication supported treatment, you have a condition to document. Record medications you once took, even if you don’t take them now. This may help you remember an allergic reaction you had.
·         Conditions:  Write down all the conditions you are or have been treated for. Ulcers? Diabetes, depression? List each condition, the doctor or doctors treating it, and when it was first identified.
·         Surgeries:  List any surgery you’ve ever had. If they don’t come to mind immediately, check out your body in the mirror after a shower. Are there scars there you’d forgotten about? What caused them? Again, travel back in time. When did you have the surgery? What was the condition causing the need for surgery? Who was the doctor? What hospital? When did the condition start that caused the need for surgery. Check your Conditions list to make sure you’ve listed that condition. Were medications tried for ‘curing’ the condition before surgery was considered? List them on your Medications page. Even if the problem was solved by surgery, list the condition. It’s part of your history.
·         Tests:  record all the recent medical tests you had, the condition the doctor was looking for, and the result.  For example. CT scan of abdomen. Pain in side. Dr. X suspected appendix. 
·         Bones:  As one ages, those bones that have support the body for decades can start to wear out.  Bone injuries over the years, how they’ve healed, and any lasting effect, can impact current situations, even decades after the original injury.
·         Allergies:  Allergies may not be to medications alone, but to things like the latex in gloves, the dyes used for certain scans. It is essential to know allergies and the types of reactions to those allergies.  

Step Two: Keep these medical history sheets out over several days or even weeks. Work on them when time permits. Don't work on it so hard at once you increase your stress. When you think you're finished, re-write the information in a format that makes sense to you – generally putting this information in chronological order starting with the most recent works the best. 

Step Three: Make copies of your history and keep them with you when you head to a new doctor’s office. Update your history regularly - once you start you'll find that you remember more and more as time goes on. 

When it finally is done, everything you and your doctors need to put the lessons learned in your past, to address your need in the present, and bring you to the healthiest future possible will be close at hand.
     
Two Golden Nugget for Caregivers:  While you’re helping an aging loved one create their medical history… do yours! And remember caregivers, letting your aging loved one work on this over time gives them something to do that is helpful, and may take a strain off you!

Tuesday, March 29, 2011

Taking Charge Part 1: Documenting your medical history helps streamline communications; assists long term health

Today’s medical scene requires active participation by the patient. The more a patient does to become a leader in his or her own care, the more successful the outcome. Yet that success actually begins with stepping back in time by creating and accurate medical history. 
Despite what you may feel on some
 days, you're not as old as the
 Coliseum in Rome,
but you do have a history
that's important to uncover.

     
We sat in the tiny cubicle in the ‘recouperative’ area after my mother had an endoscopy where the doctor had just looked down her throat and into her stomach to see what might be causing her current condition. The curtains parted as the doctor came in and thankfully gave us the ‘all clear, no signs of a problem.’ He looked Mom over, making it clear he wanted to talk to her.

      “I didn’t know you’d had a …….,” he said, looking to Mom, who like me, was baffled by the long medical term he used followed by a brief description of removal of part of her stomach.

      “Oh, I put that on the pre-op form,” I jumped in, a bit defensively. But the details, occurring before my birth, never seemed important.

Even groggy, she was able to elaborate that yes, she’d had a procedure that removed part of her stomach and cut her Vagus nerve because she’d had a benign tumor in her abdomen the year before I was born. Tumor, partial removal of stomach. Yes, those details might have been important before the gastroenterologist (doctor who specializes in the digestive system)  looked through his scope to find much less than he’d expected. I started to feel guilty that I’d not been more attentive to that detail of her medical history. As I had been for several offices and procedures over the course of five years helping care for my mother, I’d filled out all the forms. But not only did I not have the million dollar word for that procedure, I’d only written in ‘stomach surgery, approximately 40 years ago.’ That happened to be all I knew.  I thought the importance of surgical information was mainly to determine if a patient had ever had anesthesia or surgical problems. I was wrong.

It would have helped the gastroenterologist to know she had a stomach tumor in her history. Knowledge of medical history is essential to breaking the code of any current condition or complaint. Even if the information doesn’t seem important to you as the patient or a caregiver, it’s essential for connecting doctors of the past, present and future so they can offer the best care possible. It’s up to the patient or caregiver to fill in the information gaps with every physician. 

The key is to record a medical history in a form that the patient and/or caregiver can understand and use when communicating with doctors. But rushing to fill out a medical history, while waiting in a doctor’s office, is not the time to create a complete medical history. 

 Next Up:  A  Step-By-Step Plan for creating your own medical history summary.

Golden Nugget:  On the book website, http://www.whenyouragingparentneedscare.com/ , you can print forms, such as the surgical history that you and your loved one can work on over time, and carry with you when you go to new appointments.

Tuesday, March 22, 2011

Forgiveness - let the baggage go to forge a better caregiving relationship


What emotional baggage are you
carrying into your caregiver role?

Let’s move from journaling about tough topics to addressing one directly. Forgiveness. That old phrase “forgive and forget” doesn’t really work, does it? How often do we really forget the issue that caused us to learn to forgive? We learn, we move on. That’s about the best a human being can do. We learn that we’re all human and that people make mistakes and sometimes those mistakes hurt others.

In the role reversal that comes with caregiving, there is often a great need for forgiveness.

When caring for an aging parent, an adult child sees their parent in a whole different light. Sometimes that light is colored with pain from past hurts. Recall the many times when you were growing up that you told yourself, “I’d never speak that way or say such a thing to my child!” 

For those of you who are parents, now consider how many times you have caught yourself actually saying or doing those very things. Being a parent is a reality check for our perceptions about how we were parented. When the situations reverse, and we have to start using parenting skills in our interactions with our own parents, emotional baggage often surfaces. 

Sometimes we grow past the hurts of our youth and they don’t affect our role as caregivers, but more likely there are at least some issues that linger. Now the reality check becomes “Are your interacting with your parent based on ‘now’ or ‘then’?”

If there are deep emotional scars from childhood, a caregiver needs to address them, whether it is with the parent they care for or with a professional counselor or pastor. Unfortunately, when many caregivers are thrown into the position by medical crisis and time is already limited, healing relationships often gets put on the back burner. Resentments build and opportunities for healing are lost.

A couple of weeks ago, I did an interview with Denise Brown who does some great work coaching and encouraging caregivers. She’s been presenting a series on forgiveness at http://www.blogtalkradio.com/caregiving. The stories shared are personal from caregivers who have faced struggles because of issues in the past. They’re not how-to’s but real people talking about real hurt they’ve overcome while caregiving. In my interview it was hard to share details about my mother’s alcoholism and how it affected us. But the main point I wanted to make was that caregiving is an opportunity to work through those issues as an adult, not the hurt child, and forge a better bond with someone we love – or want to love in new ways. In our case, somewhere along the way we moved past a lot of the baggage – hers and mine. I learned that the influences affecting the child I was were not the influences on me as an adult. Did they affect me and the person I’ve become? Sure. But did they need to dictate how I functioned while caring for her? No. That was a choice.

Because I was willing to look at it that way, I received an incredible gift – my mother. A series of health crises opened a window that made it possible for my mother to beat the addictions that had controlled her life. She both freed and found herself at age 66. Because she was willing to let me into her life as a caregiver and we looked beyond the past, I had the blessing of being there when she became the Mom to me that I’d always wanted. Though I knew that Mom, for only four years, to me she is still one of the bravest and strongest women I’ve ever known.

The past is only important in what we learn from it and how we choose to let it influence us.

Golden Nugget for the Caregiver:  You can choose to check your own emotional baggage at the door, but remember the person you care for may also have theirs. Their baggage is not likely about you, but might affect how they interact with you. By showing them how you leave yours at the door you can help them leave theirs there too!

Friday, March 18, 2011

Writing for Problem Solving, Positivity, and Stress Relief

Now let’s stretch the journaling idea a bit. Let’s take from the cozy thoughts of recording fun and sacred memories to using it as a tool for reducing stress in the senior/caregiver bond.

Start with a notebook. 
Open the page so that there are two 'clean' sheets facing you.
Put the heading, POSITIVE on one page, and write a positive thought. 
On the other, write the heading CHALLENGE and list one challenge you face with the person for whom you are providing care. For our purposes today, let's say it's "Mom". 

Because communication is the biggest challenge caregivers face, using an 'active' journal can be a tool to address issues of concern while holding on to positive and loving thoughts.

A caregiver or senior can write down issues of concern or frustration, helping to relieve an immediate stress on a paper or in a notebook. It is then shared, so that a conversation over an issue of tension can be started. Set up guidelines for use such as dealing with one issue of concern at a time. 

Mom writes in the journal.

Positive Page
Mom to caregiver daughter:  I really enjoyed the dinner you brought me yesterday.  
Challenge Page
Mom to caregiver daughter: I am always worried we’ll be late to appointments.

Response

Positive Page
Daughter to mother:  I'm glad you enjoyed dinner.  Maybe we can go out to eat sometime soon.

Challenge Page
Daughter to Mother:   It would help us be on time if you could be dressed when I come to pick you up. (Neutral answer, no accusing!)

          The scenario above gives the writers a place to address a single issue rather than a growing list of frustrations they may be having. How might the caregiving daughter’s response change if either of the following comments were let in the journal next on the challenge page?

Mom:  I can’t get dressed before you get here because I always have trouble with my buttons. 
Or
Mom:  I’m never sure when you’ll get here. 

Immediately, solvable issues come to light without confrontation during the heat of frustration. 

Golden Nugget for Caregivers:  Taking the journal home before reading it is  important. It provides distance from any concerns raised so that tempers don’t flare in defense.
             
“Writing can pull together information so that you take something that may be stressful and begin to think of it in a new way,” explained Kara Bopp, PhD, a professor of psychology at Wofford College, in Spartanburg, SC, when describing the effectiveness of journaling. 

By including a positive comment for every one where you address a challenge, you help retain a balance in communications. Stressed caregivers and seniors both tend to focus on the negatives. By including positives you hold on to the larger perspective of love and care. The positive message can be as simple as an "I love you" or "thank you for being here for me." Sometimes, both the caregiver and senior involved need that reminder. Seniors feeling as if they are a burden often feel unworthy of the love they are receiving when they are cared for. Caregivers often fight feelings of inadequacy and failure when they want to 'fix' situations that cannot be fixed. Getting that reminder of love and care pulls both parties back to the heart of the matter - the love and care in the relationship.

There's a great book out called 14,000 Things to Be Happy About by Barbara Ann Kipfer.  If you can't come up with a positive comment for your journal (and let's face it, there are times that is difficult!), consider picking up a copy. If you or your loved one are really stuck in negativity, get a copy and keep it beside your journal. You can also record happy memories in the 'positive' side of your journal. 

Journaling can help maintain balance for those giving and receiving care. 

Tuesday, March 15, 2011

Journaling Part 3: Connecting from a Distance

I’ve been reviewing journaling as a tool for connecting with aging loved ones. But what happens if you live too far away to help start a journaling project and fuel the fires of encouragement to keep it going?
           
Ideally a senior takes the initiative to start writing on his or her own, recognizing the value his or her stories can have. Some senior activity centers and churches host workshops or writing groups that help encourage seniors and help them feel empowered to start their journey into authorship, improved mental conditions and more positive attitudes about themselves and what they have to offer. But if that isn’t an option in your community or situation, seniors can certainly write independently. Some are great at computer journaling, others don’t want to step foot near a keyboard. Find what encourages the senior you love and care for.

If distance prohibits you and your children from facilitating an ongoing multigenerational journaling exercise here are a few tips:

Journaling by phone can help keep
family connections strong
Phone assignments:  You can pick up a copy of a journal with memory triggering prompts. Have your kids call once a week to give “Gramps” his assignment.  Ask him to read what he wrote from last week’s assignment.  If he’s a computer whiz, let the entries be sent via email or let your kids show you and Gramps how to Skype.  (Really, I had my own daughter show me how, so I’m not making fun of anyone here!) Doing the journaling interviews can be done across the miles. Think too, that this could well become a favorite family time, or a sacred time for your kids to have with Gramps while you’re busy getting dinner ready or other tasks.

Call a local church. Talk with the youth minister and see if you can set up a time for some of the youth group members to visit with your parent to record living history and help “Gramps” journal. Even if you aren’t a member of the church, reaching out builds your own support network. Most churches are willing to help community members who aren’t members. If you are not geographically close and setting up a youth interview program for “Gramps” feels like one more task you don’t need on your plate, think a little about the long term impact. In those weekly or monthly visits, “Gramps” is being entertained and he’s giving back to others. It’s also a time you don’t have to fill for him, and therefore may be a break for you, and you know someone is with him for that time period.

Caregiver Gold Nugget:  There’s an added plus. Building a relationship with an area church group will also give you another set of objective eyes in case you need to verify concerns you may have. This is particularly helpful when offering care long distance. Perhaps all of a sudden you notice Gramps doesn’t seem to be connecting in conversation the way he used to when you call to check on him. Someone who’s been visiting with him weekly, when perhaps you can only make monthly visits, can offer support for you and give you feedback you may need when you call the doctor with your concern.   

Thursday, March 10, 2011

Journaling, Part 2: Creating Legacy


This entry from one of the legacy journals I gave my dad,
tells only a bit of the story.  I never heard whether
 he got that 1941 Buick convertible.... But I do know
about the littlle red Triumph he zoomed around Paris in!

Writing for legacy

Every senior has a wealth of life experience that should be recorded for the next generation(s) to learn from. For me, reading the entries in my father’s legacy journal in the weeks after he died was bittersweet. I loved seeing his handwriting again and ‘hearing’ him through the words I read, but held in between many of the written lines were the shadows of more stories I knew I’d never hear. So I encourage caregivers and their families to be involved in the journaling process with their loved ones which can make the experience even more meaningful.

For reluctant writers, consider a focused journaling experience. Like a legacy book that guides the writer.  Or, create a personal journal that is topic centered. “History Through My Eyes” is a project that can encourage seniors to offer personal insights on historical events that have happened during their lifetimes, leaving an invaluable legacy no history textbook could replace. Granchildren, nieces, nephews, etc, can list things they are studying in school and take turns visiting “gramps” to interview him, writing down his tales or even taking the journaling activity into audio or video format.  

A different twist could come with “Technology Through My Eyes.” Now many seniors thrive on microwaveable meals yet were also from the generation insisting that their children stand ten feet away from the ‘contraption’ the first time it was used in their homes. Interviewees can make lists of technological tools they use everyday and record “gramp’s” response to them or his tales about how those albums he plays are really not just giant CD’s.

My, how times have changed…. “Working Man (or Woman)” could detail life lessons learned through the various jobs a senior has held during his or her lifetime. Detailing the kind of work they’ve done, why they took the job, who whey worked with, what insight they gained and life lessons learned can stimulate memories and conversations never before held with family members. This is fun for younger generations too whose modern interpretation of what hard work is may be challenged!

Or think of Money Matters.  I often remember my father telling me he could go to the movies and get a pop for 15 cents.  Yep, cents.  Think of the conversations that could be had when the cost of entertainment, cars, and groceries are shared.

Presenting Gramps with a bound journal (decorated by a grandchild perhaps) with a request for him to fill it may be a great idea, but for Gramps, it may be daunting. Perhaps he’s never been a ‘writer,’ or is insecure about his penmanship, spelling, and grammar and has concerns about who would read what he writes. Or, he may have some physical problems with eyesight or hand-eye coordination that make it difficult.  

Getting multiple generations involved in the project can be the key to success.  But what if Gramps doesn’t live nearby?  What if time is a factor?

Next up: I’ll share some tips for expanding your caregiving team so that such activities are possible, even if you, the primary caregiver, can’t lead the effort.  





Tuesday, March 8, 2011

Journaling, Part 1: A Multi-Use Tool for Engaging the Minds and Hearts of Seniors, their Caregivers and Family


Catch precious memories on paper
 before they disappear.

Though a picture can be worth a thousand words, a word can bring forth a multitude of memories no camera ever captured. One memory shines mental light on others, as the sun captures the sparkle of dew drops on a spider’s web. 

Writing has been proven to be a valuable tool for seniors, their caregivers and family members - it's a way to catch those dew drops before they disappear. Whether in a group setting, such as a therapeutic class, with a journal sitting beside a favorite chair, or through a wide-eyed grandchild taking notes as tales are told, the written word unlocks doors to the past, engages the mind in the present, and leaves a legacy for the future.  

“In America, we have focused on keeping our bodies healthy, but not our minds.  Thinking in new and different ways is what we look at for with a quality brain workout.  Writing provides that,” explains Kara Bopp, PhD, a professor of psychology at Wofford College, in Spartanburg, SC.

Bopp is co-creator, with writer Jeremy Jones, of the Living Words Program (www.LivingWordsProgram.org) designed to use creative writing as a tool for stimulating seniors mentally and socially. 

Writing to stimulate the mind and spirit

In group workshops, Bopp and Jones have guided seniors through their fear of a blank page to a believing in themselves (self-efficacy). Her program has proven beneficial for seniors at varying ages and those with early onset Alzheimer’s. In group settings, certain writing prompts then become tools for socialization when seniors start to share their stories with others. 

Many senior activities, designed to create social connections, encourage fairly superficial types of interaction. Writing takes these relationships further, where memories and ideas attached to heartstrings often emerge and become celebrated among peers.       

Bopp also explains that when seniors experience success with their own written words, they take that positive feeling home and often seek to duplicate it in other environments.  

Though admittedly not all memories written are meant to be shared, writing then becomes a tool. Writing is a tool can be used in numerous ways – whether stimulating the mind and memory, relieving stress, or creating a legacy, we’ll look at them together in this post series.

Resources: 
Exploring Our Lives:  A Writing Handbook for Senior Adults by Francis E. Kazemak
A Mother's Legacy Journal:  A Family Treasure for Your Children by J. Countryman (Hardcover - Apr. 15, 2004) - Bargain Price
A Father's Legacy:  Your LIfe Story in Your Own Words by Jack Countryman and Terri Gibbs
            Personal Note:  Several legacy style guided journals are available including ones to encourage a ‘grandparent’ perspective. When my father died, I discovered the copy of A Father’s Legacy (referenced above) that I’d given him several years earlier. I was able to make copies of what he’d written for all of his grandchildren- a priceless legacy he left for us all. 

Thursday, March 3, 2011

Moving May be a Necessity When Seeking Quality Care


   Your widowed mother has had a fall in her home. Her hospital stay is nearing an end with therapy needed. You're bombarded by decisions that need to be made. With the help of the hospital discharge planner, you select a skilled care facility that you feel will be the best placement for Mom until she can return home. She is moved and care begins with physical rehabilitation. But soon you realize that the situation is not ideal. What comes next?


A move may be necessary if a rehabilitation
 placement is not meeting the patients' needs.

Decisions for recuperative and rehabilitative care are made quickly and are based as much on bed availability or cost as any other qualification. This is a point of great anxiety for caregivers and their loved ones. All want to make the best decision, but time is often a factor that limits our ability to 1- feel comfortable with the decision and 2- ensure that the placement is truly the best option.

What may well be 'the best placement option at the time' may not be the best placement for the entire time that recouperative or rehabilitation is necessary. Caregivers often feel that they have no other options, or, likely exhausted emotionally and physically by the recent ordeal they have shared with their loved one, are resistant to accept that a change is needed.

This becomes complicated further when a parent complains about the care being offered. Those complaints may be grounded in truth or the overwhelming desire to 'go home.' This only magnifies the stress on a caregiver who is trying to discern the reality of the situation.

To take some of the emotion out of your re-evaluation of a care plan for your loved one, try asking yourself some questions that will help you see objectively if Mom's placement is really the best for her and if a change or move is needed.

1.  Is she being encouraged to help herself to the extent of her abilities?
2.  Is she feeling supported by the staff?  Are there any signs that she is not being respected as a person.
     (negative comments from staff?)
3.  Is she being kept clean?
4.  Is therapy being received at the designated times and for the length of time recommended by the doctors?
     Is she or are you being given progress updates?
5.  Is the staff available to speak with you and answer questions?  (Keep in mind, that it's always better to ask for an appointment when your questions may require time to research the answers (ie- look extensively through charts))
6.  Can you 'pop in' to see that the care offered your mother is consistent? Do this, to make sure that the level of care does not change during the course of the day.
7.  Are all safety measures being used consistently? 

If you feel that these issues are not being addressed, it may be time for a move. First, take your concerns to the staff of the current facility. If they are not addressed or answered to your satisfaction, realize that you and your parent have the right to seek care elsewhere. It does involve work, but can be done. You may have to approve the change through insurance or may need to be willing to pay more out of pocket in a different placement.  Research is important. Talk with your mother's doctor or call the hospital's discharge planner back to ask for a list of other potential facilities for care. Ask for recommendations based on experiences they've had with other patients. Visit the facilities you are considering for a new placement. While the current placement may not be ideal, it may fit the need to give you enough time to make sure that any change made will actually be an improvement.

Remember that care choices are just that, choices.  You (and your loved one) have the right to make the choices that best meet your needs. 





Tuesday, March 1, 2011

Goal Setting for the Dying – and the Living

Ryan Jorgensen | Dreamstime.com

Being a cheerleader lets joy
 be a part of life's finish line.
I intentionally left “the rest of the story” out of my last post.  Recall the dying man given perhaps days to live. His family gathered, arrangements made and the goodbyes prepared for.  Days passed…. No death.  The son who lived several hours away had to return home. This brings up an eternal mystery of life and death - time. 

The doctors gave the family a picture of what to expect as the pancreatic cancer overcame their loved one. As the father moved through the stages, the family gained comfort from what seemed the ‘normal’ progression. But what didn’t fit ‘normal’ was the time frame of his actual passing.

The will to live is a powerful influence for all ages, yet its mystery is often most evident in those who are facing their last days. The man given ‘days,’ lived weeks longer than anyone expected. Diagnosed in October, the family had their most meaningful Thanksgiving together… and Christmas. The man’s daughter said that toward the end, he would ask, “Is it Christmas yet?” Clearly, he had a goal.

Sometimes when we know about a person’s goal we can become a part of the joy in reaching it. We do that every day with those close to us. We encourage our children, spouse, and friends to tackle new challenges and reap the rewards. It doesn’t matter what the goal may be, we’re there to encourage. As caregivers, when a loved one has a goal for the end of their lives, the encouragement is much more difficult. We don’t want them to reach that goal. Their goal means our loss. So what is a caregiver to do?

Embrace your loved one’s goal. If it’s “make it through one more Christmas,” try putting some of your anticipatory grief energy into making that celebration the most memorable yet. What are the special memories and traditions that can be revisited? Who else could be brought in to help with the celebration of fully living life? Instead of focusing on this being the ‘last’ holiday or month, or week, look toward making it the best. 

When you refocus your energy on the positive, it doesn’t make your sadness or grief disappear. But it gives you something more positive to direct your mental and emotional energy toward. The thoughts of ‘lasts’ will come, as will tears along the way, but by focusing on increasing the quality of the time, when the end does come, you have an extra bit of grace for your own grieving process. You’ll know you did all you could to make the finish line spectacular. You cheered and provided the support needed to give your loved one that sense of pride in reaching a goal. You've given that person a gift by sharing their goal. You are not cheering your loved one toward death, you’re cheering on your loved one’s desire to make the most of every moment of living.