Monday, March 27, 2017

Who is Driving the Car...Keeping Your "Sandwich" Safe

Some of the most challenging situations you and I will ever experience center around a car. I still remember begging my parents to let me drive before my 16th birthday.  Several other kids my age had been given the keys to their parents' cars well before they were of legal age to drive. One of my cousins and a great-niece already had brand new cars in the garage several months before their 16th birthday...ready for them to drive on their big day.  But my parents would not relent...and I was not allowed to make a solo drive until the morning of my 16th birthday.

Me atop my Grand-dad's car in a high school parade - 1972.
I think the car was a Plymouth Sebring!
Conversely, I remember the ordeal that arose when my mother had to tell my Grand-dad (her dad) that he could no longer drive.  He was not having it!  My grandmother stopped driving fairly early, because she was given a diagnosis of Parkinson's Disease, and she somewhat reluctantly accepted the fact that it was deemed unsafe for her to drive. But my poor grandfather felt that my mother and dad were totally emasculating him by suggesting that he put down his car keys.  

Never mind that Grand-dad could not see well enough to discern a raw onion from potatoes on the dinner table...or that he could not hear most of what was said in normal conversation.  Forget the fact that Grand-dad passed someone on the highway north of town one night and took off this person's side mirror - and never knew it!  My Grand-dad still thought he needed to be able to drive...if for no other reason than to be able to transport my grandmother wherever she wished to go. The only way Mother convinced Grand-dad to give up his car is by telling him that a beloved grandson who lived in Texas needed the vehicle.  If Brent needed his car, Grand-dad was glad to let him have it.  

I am quite certain that on some level, my grandfather realized that he was being handed an "out"...but he was allowed to "save face" somewhat.  He wasn't really giving up driving as much as he was helping out his grandson by providing him with a car.  And that was that...except that more than ever, my mother and I - and other family members - were called upon for rides to everything from church to doctor appointments to shopping trips, and more.  And we made this "taxi service" work.

My great-Aunt Altha simply declared at some point that she was finished driving. She called her grandson and told him to sell her car...which he did.  Nothing else was said...there was no remorse.  My aunt fully realized that the time had come to put away her car keys and let someone else do the driving. If only it were always that easy!

1967 Chevy Impala similar to the one my grandmother owned. 
Photo from http://www.impalass427.com
When my dad's mother - my Mam-ma Polly - began to have some little "fender benders" at age 95, we began to hint that the car should probably go.  However, the decision was pretty much hers. And one day, she asked my sister and brother-in-law if they would help her sell her 1967 Chevy Impala - a "mountain-green" tank with a white hard top (similar to the one pictured, but I think hers was four-door).  I believe the buyer paid $500...but the bigger payoff was that the car was not available...and the temptation to drive it was removed.

My Grand-dad and my Mam-ma Polly both lamented frequently that they had to depend on others for rides. They really missed their cars. I think my maternal grandmother and great-aunt enjoyed being chauffeured around - especially my grandmother.  It was not always convenient to shuttle them here and there...and we couldn't always drop everything and go at the very minute that they called and wanted a ride. For my grandmother, especially, planning ahead was a real problem - and apparently not in her vocabulary. But in the end, we made it work as best we could for everyone...and hopefully, we kept the roads safer for others.

December 21, 2015, a 90-year-old man over-corrected on the highway just outside our community and crossed the center line, hitting my brother-in-law, Bruce, and his wife head-on.  The man died at the hospital an hour or so later.  Bruce endured four bowel-resection surgeries in 3 days due to internal injuries from his seat belt...and on New Year's Eve, he succumbed to a heart attack and died. This caused all of us to begin to take a hard look at the driving habits of my mother-in-law, who was then 89. 

We talked about the car - and no longer driving...and Grandma E would say, "I want to drive until I am 90."  Greg agreed to this...as long as nothing changed. She rarely drove anywhere...Walmart, the beauty shop, or maybe to church.  Once in awhile, she would venture across town to visit us.  Still, we worried about her reflexes...and how she might react to other drivers.  As the months ticked by and we neared her June birthday, Greg and his older brother began to discuss what to do about her car.

Just as had happened with my cousin and my grandfather, our great-nephew was on the hunt for a good "commuter car" to drive to work each day in Nashville, Tennessee. The 2007 Ford Fusion that Grandma E was driving had right at 15,000 miles and looked like brand new.  Her sons began to suggest that Grandma E give the car to her grandson.  And she agreed to do this. 

I will tell you, the day that our great-nephew and his family drove away from Grandma E's in the little white car was bittersweet.  I knew it signaled a shift in the family dynamic...and a dependency upon us for her trips - to anywhere! But we have managed pretty well, so far.  The biggest issue we have had is getting Grandma to remember to plan ahead...and on some levels, that's just not gonna happen!  So when I picked her up one morning last week to go to our Aquatic Center for a swim, she said, "I've called in a prescription refill at the pharmacy, and it will be ready later today."  Luckily, it was ready by the time we finished our swim, and we were able to stop and pick it up on the way home.


Other times, she has forgotten to tell us ahead of time about an appointment - or she hasn't remembered that she is running low on milk and other staples.  So Greg has had to adjust his schedule to accommodate an extra "run" to the store - or to her house to pick her up or deliver her somewhere.  But the payoff is that we know that she is not driving herself.

We recently got rid of the last two "5-way harness" car safety seats that we had for Nathan and Zola and promoted them to high-back booster seats like their brother, Timothy, uses. These seats utilize the car's seat belt to strap the child in securely, and we are still teaching "the littles" to fasten their own latches.  But once that is accomplished, the wrestling of those straps from the other car seats will be a distant memory in the rear-view mirror!  These seats should serve the children for the rest of the time they need a child safety seat...so switching them out was monumental in our world!


And yes, some days, we have to do some strategic planning...who needs to be delivered where - and when - and where we will all sit. Right now, our Chevy Tahoe has ample seating for us, Grandma E, and the three children - with a little room to spare.  And thankfully, Grandma E is able to pull herself up into vehicle...something my Mam-ma Polly was always able to do, also.  Otherwise, we would have had another adjustment to make!

I share all of this to say that getting everyone safely from Point A to Point B can be a challenge.  And getting your seniors to stop driving when it's time may be one of the biggest issues you will face in managing their care.  There is a lot to consider as you make this change.  I know people in their 90s who are still driving and doing a fairly good job of it...and I know people in their 70s (like my maternal grandparents) who were already past the time when they could safely maneuver a motor vehicle.  


Each person and situation is different. I know more than one caregiver or guardian who has hidden his/her parent's car keys. I know children who have called the local police and BEGGED them to "make Mom or Dad quit driving"  - and they cannot do this.  Unless your loved one is involved in an accident or fails a driving test, the police are powerless to say, "You have to stop driving" just because this person is advanced in age.  In fact, the police chief in our town called a friend of mine and said, "You need to get your mother to stop driving."  But HE (the police chief) was legally unable to do anything to dissuade her.

You must be prepared for what happens after the car is gone.  My mother-in-law and Mam-ma Polly were both in the habit of running to the store for just one or two items.  So when they needed Jello...or ran out of salt...they hoped in their car and drove to Walmart or a nearby grocery store and got these things.  If they got a hankering for a hamburger at 5:00 p.m., they got in their car and drove to Sonic®, Burger King® or McDonalds® and ordered whatever they pleased.  Your senior will have a major period of adjustment as he/she realizes that the vehicle really is no longer available for these spontaneous trips.

You must also be prepared to do more shuttles, and some serious scheduling may have to take place.  When I was driving my grandmother, it worked best for me to do all of her errands on one day (as much as possible). For us, this was Friday afternoon.  I took her to the beauty shop, and while she was there, I went to the pharmacy and got her medicine and handled any other errands she had on the list.  Most of the time, she gave me her grocery list, and I bought the items while she got her hair done. Then when we got home, I unloaded everything for her and helped her put it away. 

Schedules are good, but there will be unexpected doctor appointments, times that your loved one wants to visit a friend or attend a party or other function, and more.  I could not persuade my grandmother to ride the church bus that would have gladly picked her up and delivered her back to her home.  She said she didn't want to wait - or to be the last one returned home.  Well, somebody has to be first and last!  Thankfully, a fellow church member lived nearby and picked her up most days - and sometimes my mother and her husband were in town and were able to take Mam-ma to church.  But my point is that there will be some necessary schedule adjustments for your loved one - AND for YOU!


The other thing you have to figure out is what to do with the car. Sometimes this works out fairly easily...and other times, it's a real bone of contention.  People are attached to their vehicles...and worries that they won't bring a decent price can be a concern for an elderly person, in particular. Some will want to keep the car in the carport or garage with the promise that "I won't drive it."  That is probably not a good idea...and that promise will end up being broken in an "emergency."  I know people who are in an Assisted Living Facility and have a car sitting in the parking lot, just because it makes them feel good to know it's there!  I also know one person whose children disconnected the spark plug, just in case he tried to take off in said vehicle!  My best advice is to figure out a way to get rid of the car - even if you have to be pretty creative in doing so. Remove any and all temptation  - and possibility - for the senior to drive.

In her book, When Heads and Hearts Collide, my mother talks about a conversation she had with my grandmother, in which Grandmother told Mother, "I don't want you to be my Mother!"  Believe me, that was not a role Mother relished.  But just as our parents told us when we could begin to drive - and were most likely heavily involved in helping us acquire our first car - or maybe YOU have done this for your own teenagers...many of us will come to a point where we have to "parent" our parents or grandparents - and help them make some life-changing decisions about driving.

At the end of the day, the goal is to keep our loved ones - and all others on the roadways - safe from an injury...or worse.  There may be some heated discussions and a few tense moments in the journey, but this is generally a necessary challenge that must be addressed.  A fender-bender and dealing with insurance agents, injured parties and more can be a frustrating experience...but a more serious accident could be life-changing.  The question of who is driving the car is an important one to answer...and worth any hassle and heartache on the front end.

Sunday, February 19, 2017

How Do You Manage Your Senior's Finances...and a Few Other Questions and Insights

Several months ago, I was contacted by a writer for NerdWallet.com.  She gave me a lengthy list of questions and asked if I would be willing to provide insights to help her readers who were caring for seniors.  I agreed and spent a couple of days compiling thoughtful answers to her questions.  She didn't use any of them in her story.  

Since I put so much time and energy into the information, I thought I would post it here, so that you, dear readers, can avail yourself of any insights you might glean.  So here goes...


1) Please tell me a little bit about yourself. Is your grandmother your mother? Did she raise you?

I have been married 42 years, and we have no children of our own. My father died in October 1999.  He was an only child, and his mother - my then 87-year-old grandmother - was still living alone in her own home, driving, and doing pretty well for someone nearly 90.

My mother helped my grandmother with many things - as did my sister and I...but Mother remarried in February 2002. Mother traveled a lot in her motorhome...in fact, she and her husband left after their wedding for a 6-week trip along the East Coast. That summer, my grandmother fell and required 3 months of therapy in a skilled nursing facility.  My mother was traveling with her new husband, and the care of my grandmother became my responsibility.

Mother was planning to spend the FOLLOWING summer (2003) traveling, and just as she was leaving, my grandmother again became ill and required a stay for rehab at the nursing home.  Mother handed me my grandmother's checkbook and said, "You're going to need Power of Attorney." So for the next 10 years, *I* was my grandmother's guardian.

My sister, brother (who is deceased) and I were fortunate to grow up in the same community as ALL four of our grandparents, and we were very close...we saw them on almost a daily basis.  My grandmother did not rear me...but we were very close, and she was very much a mother figure to me in the last 10 years...especially given how intertwined our lives were - and the fact that I was somewhat her sole caregiver.


In 2009, my sister's daughter had her first child.  My niece was a single mother attending college, and my husband and I kept the baby while she went to classes.  This morphed into us keeping our great-nephew for longer periods of time. By 2012, my niece had given birth to two more babies and gotten married, and my husband and I were heavily involved in assisting the whole family. So my "sandwich" was my great-nephews and great-niece - and my grandmother. 

My grandmother died in 2013...and the "sandwich" shifted from caring for her and the babies to caring for my mother-in-law (who is now 90) and these three children. This situation is not quite as "involved" as it was...the children are now 4, 5, and 7 - and all in school - and my husband is primarily responsible for his mother, so my responsibilities there are negligible.  But there are times when we have all three children and "Grandma E" together at the same time...and the dynamics of a "Sandwich Generation" situation are definitely there.

Our SUV has three car seats and a handicapped sticker.  When my grandmother was still alive, I used to joke that our car often contained a walker and car seats...and diapers and Depends!  For a "childless" couple, we are well versed in all things NickJr., baby - AND Medicare and geriatric!

My mother was diagnosed late in September 2015 with stage 3C Ovarian cancer, and she began chemotherapy immediately.  Two treatments in, the oncologist said the drugs were not working and the tumors were growing rapidly. She was hospitalized New Year's Day and placed in Hospice Care three days later. She died on January 12, 2016.  Prior to her diagnosis, my mother was an active 76-year-old great-grandmother who drove her own 40+-foot motorhome (with tow car) from coast to coast.  If she fit the "sandwich" mold, it was only the context of my caring for her needs those last few days - and attending to the children and fielding their questions when they would visit her.



2) What made you want to start your blog? 


 I first wrote about my grandmother on a personal blog after several frustrating encounters with insurance companies over the Medicare Part D Prescription Drug coverage, beginning in 2005.  I have never experienced anything more exasperating in my life...and at the end of the day, I had a Medicare rep from Dallas, Texas, on speed dial. This woman would become one of my most trusted contacts over the next few years until she retired...and I always had to reach out to her for clarification each fall as I selected my grandmother's prescription coverage plan.

In 2008, when my grandmother had to go to the nursing home for a third time in five years for "rehab," I decided that my experiences might be helpful to someone else - and I needed a place to vent. So I started "The Deli" blog. At that time, I was not in a "sandwich" per se...but I had friends who were, and I hoped that by sharing my experiences about MY grandmother, I could encourage others to open a dialog about THEIR situations.


What type of support have you found in the blogging community?

To be honest, I have not received as much support as I hoped.  I participated in some forums for caregiving and the Sandwich Generation on the AARP website for a while. And I all but begged some people to share THEIR story with me in a format that I could put on my "Deli" blog.  But at the end of the day, I think people are just too tired and busy with their "sandwiches."  If you are not a writer already - and inclined to document your experiences - it's hard to make time for spilling your guts to someone else. 

Having said this, I have SEVERAL friends who are currently dealing with the care of aging relatives - if not a "sandwich" situation - and I hope to maybe resurrect the blog a bit and get some of them involved in the dialog.  We will see what happens!




3) Were you the only one in the family in charge of your grandmother’s finances?

From July 2003 until her death, I was in charge of my grandmother's finances.  At first, I let her handle her own checking account, but I soon discovered that her idea of "balancing the checkbook" was calling the bank every couple of weeks and asking, "What's my balance?"  She would write that in her register and move forward.
The impetus for me taking over her checking account came when she had to go to the nursing home for one of her rehab stints.  She had misunderstood the people at DHS and thought she was allowed to have more than a $2000 balance in her checking account and could still qualify for full Medicare/Medicaid assistance for a nursing home stay.  She had just more than $2100 in her checking account, but that was enough to cause a fee of $150 per day for about 5 days until she "spent down" her assets.  After this costly mix-up, she agreed that maybe I should handle her checking account.

Like many seniors in this country, my grandmother worked very hard all of her life, but she never made a lot of money.  She received a meager Social Security income each month that barely covered her food, utilities and medication co-pays. She lived in a home owned by my parents, so she had no mortgage or rent payment. She owned her very old car outright. I wrote checks for her groceries, her weekly hair appointments, and her church tithes.  Somehow, she always
had a few dollars left at the end of each month!

The REAL WORK came in making sure that my grandmother was sufficiently covered for Medicare/Medicaid and Medicare Part D, which took a lot of time and was incredibly confusing.  How seniors who do not have an advocate manage this maze of papers and regulations and rigmarole is beyond me!  And don't even get me started on admitting someone to a nursing facility, Assisted Living facility - or even the hospital or Hospice.  The paperwork is astounding. I kept copies of a "cheat sheet" with vital info in my wallet, because it seemed like every other day, I was needing to supply this data to someone for something!  I would just hand them a copy of this information.

Honestly, I don't see a decent way around this.  Perhaps siblings could split the responsibilities financially...but for the most part, one person needs to be handling all of this, so that nothing falls through the cracks.  I think if my sister OR my mother and I had tried to share the management of my grandmother's finances, it would have been even more time consuming and frustrating.



4) You mentioned on Twitter that you were a signer on your grandmother’s account. And you also advised against sharing a bank account with an elder. What made you choose to become a signer? Had you done your research? How did you get informed?


I had to become a signee in order to write checks on my grandmother's account.  As soon as she went into the nursing home and needed an advocate, we signed a card for me to be able to do this.  



5) As a signer what were your privileges on the account?

My name was never on her account...I was merely a "signee." This meant that I could write checks and balance her bank account.  One caveat...when my grandmother died, she had about $130 in her checking account.  I took a death certificate and a copy of my DPOA (Durable Power of Attorney) to the bank and asked to close the account, and they would not allow it.  I was not the "designee" on the account for closing it out.

This is different, apparently, from being the "signee" on a checking account.  I was not designated as the person to close the account - my dad was.  Since he was already dead, the secondary designee was my mother. SHE had to return to the bank with these papers and close the account.  Lesson learned...if you are handling the finances, make sure you are the "designee"...and that you have the proper signatures in place to access a safe deposit box, etc., as well.



6) What approaches did you take with a banking account that worked for you and your family? For example, did you rely on money management tools or software to help you keep track of everything? Or did you choose specific accounts that perhaps offered lower fees?


I did not use specific software...the account was very simple and did not need something like Quickbooks. I did acquire an online banking account, so that I could login and check on things like the auto-drafts and verify that all charges were legitimate and necessary. I would note that I set the account up with my grandmother's name, and one time I locked myself out of the account.  When I called the bank and identified myself, they would not allow me to access the account, because I gave MY name, not hers.  They had to talk to HER for authorization.  She understood NOTHING about online banking...but bless her heart, she authorized me! After that, any time I called on her behalf, I pretended to be "her" on the phone!


7) Did you at any point consider a power of attorney or was that given to someone else in the family?


I was my grandmother's Durable Power of Attorney (DPOA).  This is different from a medical Power of Attorney, which only gives you authority to speak for the person in medical situations. The DPOA is more encompassing. I downloaded a DPOA form online and we signed it and had it notarized. We had to provide copies of this document many times over the years for several different things - applications for assistance, cashing her life insurance policy, and more. I would consider this a vital document to have on hand if you are managing any business activities for a friend or loved one.



8) Emotionally, how difficult was it to handle your grandmother’s finances? How did you manage to juggle those with your family’s?

I probably spent a couple of days a month managing my grandmother's finances. Since she had very little money, there wasn't much to manage. I can see where for someone with substantial assets, this could be quite a lot of work.  The real time consumer was the vast number of papers and forms related to Medicare, Medicaid and Medicare Part D Prescription Drug coverage.  


I cannot begin to calculate the hours I spent on those things. It can be emotionally draining to manage another person's finances while juggling your own family responsibilities.  But all of this is emotionally draining on many levels.  You learn to cope...and hopefully, you have others who can encourage you.  This is why I created the blog...to encourage others and say to them, "See...you're not crazy...look what happened to me!"  Most of the people I hear from say, "These are exactly the things that are happening to ME!" Senior care is universal in many ways.

 

9) Did you make any financial mistakes along the way that perhaps our readers could learn from? (for example overdrafts or missed payments while you tried to learn how to balance it all)

I do think there was an overdraft once when I paid a bill a day or two before my grandmother's Social Security deposit was made. It seems like the fee was about $30...which I paid out of my personal account. I know that never happened again! I don't think my grandmother ever knew about the overdraft.



10) What advice would you have (emotionally and financially) for anyone who has recently become a member of the Sandwich Generation?

You are not alone.  That may not help, but perhaps knowing that there ARE people who are willing and able to offer support will be comforting. Depending on the age of your senior and the circumstances, I would strongly encourage the investigation of long term care insurance.

I know families who have scraped together funds to pay for the care of a loved one who MUST move to an assisted living or skilled care facility.  The cost can be anywhere from $3000 per month and up...and that is just for the facility. 

If you go through the posts on this blog you will see that I have outlined the "extra expenses" that might be incurred...and they add up in a hurry!  No one wants to be in the position of telling Grandma she can't have her hair and nails done every week - or any other "extras" - because there is no money.  And most people don't want to have to liquidate every asset their loved one has in order to pay for nursing home care.


11) Do you have a contact that you met in the blogging community or a friend who may have more to say on this subject? I would gladly appreciate an introduction.
 


I do not have anyone to recommend; however, my mother wrote a book about HER experience with HER parents and the nursing home…When Heads and Hearts Collide.   I HIGHLY recommend this book to anyone who has been charged with the care of a senior citizen.  It’s only $10 postage paid, and you can order with PayPal directly the sidebar on this blog.
 
Because of the things I experienced through all of this, I also wrote a book...What to Say and Do...When You Don't Know What to Say and Do. This book can also be purchased via the sidebar on this blog.


If YOU have questions...or a particular issue...that you would like to see addressed on this blog, please contact me.  We are all in this together, and as time permits, I will gladly address any and all inquiries and comments.  Hang in there!

Wednesday, January 25, 2017

Constructive Conversations - How to Talk With Your Senior

Over and again, I hear people say, "I just don't know how to talk to my mom/dad/grandparent/elderly loved one anymore."  Popular conversations with seniors center on their health concerns and physical ailments - and/or the ills of others in their circle.  Other common topics include the weather...death and dying...money and/or inheritance...feeling alone and neglected...and bowel movements. I get it!  If you rehash these same topics every week with your loved one, you may be reaching the end of your rope!

So what can we do?  One solution is to re-set the conversation pattern...to divert attention and distract with other topics that are more pleasant/interesting.  This can be done without insulting your loved one, and yes...you will have to listen to a fair amount of talk about a sore hip or how Aunt Susie can't hear a word that is said.  But you can often make some subtle shifts in the conversation topics that make the difference between a pleasant phone call/visit and one that leaves you needing a stiff drink!



When my husband's family gathers at his mother's house, the conversation runs along some pretty predictable lines.  We go through all of the grandchildren and what is happening with their schools and extracurricular activities.  We talk about any "news" from relatives who live out of state. And then, the discussion generally turns to stories about people most of us don't know, as one relative or another relates things that are happening in their own lives with their circle of friends and acquaintances.

While this conversation might be mildly interesting to my 90-year-old mother-in-law for a little bit, it doesn't hold her attention very long.  And frankly, it's not all that fair to her.  When we visit, SHE should be the center of attention.  So my husband tries to get his mother to talk about her childhood...her parents, grandparents and siblings...life on the farm in Iowa...living in a boarding house in Iowa City while attending high school...his dad's stint in the Navy...and pets they owned as kids, to name a few topics.

My mother-in-law's memory for things that happened a long time ago is fantastic.  She can recall dates and details...and it's like she is transported back in time - and takes us with her!  This is good for her...and good for us and the grandchildren and great-grands!


When my grandmother was still living and able to talk, I would call her a couple of times a week or more.  I also spent most of the day on Fridays with her going to the beauty shop, grocery shopping, and running any other errands that arose.  So there were chances for conversation by phone, in the car as we traveled, and sitting in waiting rooms at doctor's offices more. 

Generally, I would try to tell her all of the cute things that the children had said and done.  As we would travel out of town to doctor visits, Greg would ask her questions about the area, and she would point out locations that triggered a recollection, such as "I picked many a strawberry in that field," or "That's where old Uncle Matt and his family lived," or "We lived there when I was about 12, and we would walk several miles to school and "singings" at church."  She enjoyed the trip down "Memory Lane," and we learned a lot about my grandmother's childhood. 
Once my grandmother lost most of her ability to speak, "conversing" with her was truly a challenge. So I would try to think of "news" to share with her when we visited.  Again, cute stories about the little ones were always a hit.  I avoided talk of people she knew who might be doing fun/exciting things -like "I saw Ruby at the swimming pool last week"...and word of the ailments and infirmities of others.  On the phone, I always tried to steer clear of questions like "What's new?" or "How are you today?"  She would tell me anyway, but if I could keep the conversation going in another direction, there was less chance of the tone taking an unpleasant turn.  I tried to think of a few things to tell her - or ask - before I ever picked phone.

The thing that always seemed to be a big hit with my grandmother was my sewing.  My Mam-ma was an amazing seamstress and quilter.  So I would take the little garments I made for my nephews, nieces and cousins and show them to Mam-ma. She would finger the stitches and ruffles and smile brightly.  Her eyes would grow wide with joy and pride...and she would gesture that she remembered when SHE used to do this sort of thing.  In fact, I would say, "I don't know how you managed to make those tiny Barbie dresses for my sister and me."  And she would beam with pride.

We also talked about birds that gathered at her feeder outside the window - and birds that I had seen at our house...dishes that I had made - especially with her recipes...and Greg's latest projects.  My grandmother was always interested in what the men were doing...and this line of talk opened the door to remember my grandfather and dad and the work that they did.

My grandparents are all gone now...as are my parents. I think about the conversations we shared, and talks I have now with my mother-in-law and other elderly loved ones.  And I've come up with some thoughts and suggestions that might be helpful...

  • You don't have to call EVERY DAY.  My pastor told me once that "'No!' is a complete sentence!"  He was absolutely right.  For all of my grandmother's talk that "I haven't seen a soul in days," there was a virtual "revolving door" of visitors at her house/apartment on any given day.  I saw her on Fridays - and often through the week.  There was no need to call her EVERY DAY...until the time came when we had to call each day to make sure she took her medicine.  And then, the conversation was brief and generally directed toward said question.
  • Think of a few things to discuss/ask BEFORE you call or visit.  If possible, take a photo or memento to discuss when you visit.  I recently spent some time with an elderly cousin and took some pictures of my great-grandmother and her contemporaries, in hopes that she could identify those in the photographs.  This sparked a really fun conversation about "old times" and gave us something to discuss.  I also took her cookies from the recipes of my grandmother and the woman's next-door neighbor.  This was another starting point for a good conversation about recipes and cooking.
  • Be prepared to listen to your loved one's litany of ailments and complaints...but set a mental time limit.  Use your pre-planned questions/activities as a way to steer the conversation in a different direction.
  • Don't be afraid to simply sit in silence.  Some of my best "conversations" with my Mam-ma Polly were times we sat in silence on the front porch at her Assisted Living Facility and rocked in the sunshine.  We watched people come and go...we looked at the clouds and felt the warm breeze...and we were together...and that was all she needed.
  • Don't be afraid to call and say, "I just have a minute, but I was thinking of you and wanted you to know."  Every conversation doesn't have to be lengthy...and probably shouldn't be!
  • Shift your attitude.  I remember how much I dreaded the phone calls.  I knew that I would get an earful.  But once I developed a "game plan," and mentally prepared myself NOT to get frustrated or upset, everything went much better.  Yes, there were days when I hung up the phone, shook my head and laughed at some of the things that were said.  But that was better than wringing my hands and gritting my teeth! (And yes, there were still days when this happened, regardless of what I said/did.)

The bottom line is that this, too, shall pass.  And you will long for your loved one's voice - even if it is to chastise you that "you don't do enough for me," or "I haven't been to the bathroom in three days."  We never want to disrespect our elders or make them feel like their thoughts and feelings are not important.  Sometimes, we have to simply listen to them talk.  But that doesn't mean we can't at least have a plan to steer things in another direction.  The end result might just be that the phone calls and visits become more pleasant.

If you have questions or comments, I would LOVE to hear from you. Please weigh in, and let's start a conversation!

Monday, January 23, 2017

Who Is In Your "Sandwich?"

A childhood friend and I have been corresponding via text and e-mail for more than year now, and our conversations have involved several twists and turns.  But they keep circling back to what he refers to as "the elders" - namely, a handful of senior citizen family members that he attends to as time and needs arise. Indeed, we are at "that age" where there is no shortage of "elderly folks" who need our attention.  

Grandma E and her son (my husband, Greg)
My parents and grandparents are longer living...but my mother-in-law is still with us.  We are blessed that she is able to live alone in her own home, even 8 months past her 90th birthday.  She no longer drives, but unlike many children of seniors who have stopped driving, there are few requests for a ride anywhere.  My husband (her youngest son) takes her wherever she wants to go...which generally consists of a semi-weekly trip to the hairdresser and the grocery store - and maybe to church on Sunday.

My great-nephew, Timothy, with my Mam-ma Polly and
my mother-in-law, who the children call "Grandma E."
Even though I am not directly involved in the daily care of an "elder" at this point, many of my friends and loved ones are.  I listen as they voice their concerns and frustrations.  I hear their tales of parents who are stubborn and refuse to admit that they need in-home care - or to allow the caregivers to assist them with personal care, such as bathing.  I understand completely when worries about falls, mixed medications, and failing memories are voiced. I totally GET IT!

Just like countless others, I've "been there, done that."  And my mantra is, "You are not alone."  I know that eldercare can be incredibly lonely...and if you are caught in the middle of a "sandwich" that includes children AND seniors - well, your world is likely something of a circus on any given day!  This doesn't even allow for the fact that you may be juggling a job, a marriage, civic and church responsibilities, and more.  You may be dealing with your own health concerns.  It's enough to make anyone run screaming into the night!


This is partly why I started "The Deli" blog when my paternal grandmother was still living and in my guardianship.  I wanted this to be a place where I could "vent" and share my frustrations.  More importantly, I wanted this blog to be a venue where others could read about our experiences - and Mam-ma's antics - and see that "Hey!  I'm not the only one in this boat!  My parents/grandparents do a lot of the same things and have many of the same issues!"  I wanted those who are juggling several "balls" at once to see that we CAN survive these years...and even remember them with a bit of fondness - not in what was happening, but rather, that we did a decent job of surviving!

I have toyed with the idea of turning this blog into a book...and I may still do so at some point.  It would be great to be able to hand my friends and others a book that chronicles my journey and say, "Here...this might help you."

Meanwhile...a similar book does exist.  My late mother wrote a book about HER experience with my maternal grandparents, who both spent their last days in a nursing home.  Neither one of them wanted to be there, of course. NONE of us wanted this.  But sadly, this is sometimes the only alternative.  And Mother's book has helped countless people cope with this decision and the resulting experiences.

If you would like to order a copy of When Heads and Hearts Collide, I have plenty and would be glad to send you one.  I am asking the minimal price of $10 postage paid...and you can order via PayPal by clicking this link or the one on the sidebar.

Wednesday, March 2, 2016

A Lot To Process...a final lesson from my mother

A few months ago, I wrote a post about my mother’s diagnosis of late-stage ovarian cancer and how she was battling the beast.  She and I shared this “sixth sense” that her time was short…but I had no clue how little time we truly had left.  I have to admit, when my always stoic and positive mother began to tell me “I really feel bad today”…or “It’s not going well”…I thought, “Her attitude is not helping!”  After all, everyone tells you that “attitude is half the battle” with cancer…right?

But when the oncologist stopped chemotherapy after the 2nd treatment, noting that the blood work indicated that the cancer was spreading, I found myself feeling discouraged…and I knew that Mother felt that, too.  When she visited a surgeon, and he outlined how risky – and ineffective – “debulging” would be in her case, I felt her disappointment and despair, as hopes for beating this were somewhat dashed.

We tried to look on the bright side…cessation of the chemo treatments meant that Mother would hopefully feel well enough to join the rest of our family for a Thanksgiving meal at our house…and for our Christmas Eve celebration.  And indeed, Mother was able to come to both events.  She mostly sat quietly in one of our club chairs in the living room – or at the dining table…but she engaged in conversation, and she delighted in her great-grandchildren, who kept everything lively.
 

Mother was able to attend the children’s Christmas program at church – and a play that Timothy’s first grade class performed shortly before Christmas break.  The classmates presented “The True Story of Rudolph” – and our Timothy was Rudolph.  Mother and Lee attended, along with other family members – Mother sporting a red and white “Santa” cap…and Lee wearing a felt “elf” cap.  Timothy never questioned their attire.  In fact, none of our children ever asked about Mother’s wig or her caps throughout the entirety of her illness, as far as I know.  Timothy even visited her in the hospital once when she was wearing no cap or wig…and he didn’t say a word.

My mother decided that her only hope might lie at M.D. Anderson in Houston.  So she secured an appointment there for a “work-up” on January 6th.  She and her husband, Lee, planned to get in their motorhome on Monday, January 4th and set out for Houston…taking 2 days to arrive.  This was the earliest available appointment that would not be interrupted by the holidays…meaning Mother waited almost 3 weeks without any treatments whatsoever.  During that time, she developed pneumonia, which was treated with strong antibiotics…and she grew visibly weaker.

Even though I talked to my mother virtually every day – and exchanged e-mail messages several times – she kept us all somewhat “on the fringe” about her illness. She would drop hints that she did not think that she was getting well – or that she would beat her disease.  But for the most part, she talked of the future.  She wrote a blog post about how she was unable to do anything for Thanksgiving…but next year she hoped to pick back up her apron and host again.  And she waffle between talking of getting weaker – and planning her next RV adventure or writing assignment.

So I would think, “Girl, you are being melodramatic.  Your imagination is working overtime.  Mother will beat this!  You’ll see…this time next year, she will be traveling and hosting family dinners and playing in the back yard with the kiddos.”  But when I hugged her as she left our house on Christmas Eve, and she began to quietly cry, I knew something was terribly wrong.

In addition to the concern over my mother, my husband’s brother and sister-in-law were involved in a terrible head-on car crash on December 21st.  My brother-in-law suffered massive internal injuries from the seat belt that resulted in four bowel resection surgeries in three days.  He was transported to a trauma ICU in Little Rock a few hours after the wreck, where a surgical team met the ambulance and whisked him off to begin repairing the damage.  Thankfully, his wife suffered only bruising and a broken pinky finger; however, she was in pain – and shock – and needed medication for quite some time afterward to allow her to take deep breaths and ward off pneumonia.

Just as we entered the week of Christmas, I contracted an upper respiratory virus that knocked me to my knees. So one day while Greg took his mother to Little Rock to see his brother at the hospital, the cat and I stayed on the couch under a blanket and tried to recuperate.  I finally decided that the lovely sit-down ham dinner with all the trimmings I had planned to prepare for our family on Christmas Eve would be a health hazard in more ways than one.  My mother graciously offered to treat us to pizza…and it was such a hit (served on festive paper plates) that I think this will become a new holiday tradition.


Greg's mother and his brother, Bruce
July 2015
Greg and his mother and I traveled to Little Rock on Christmas Day to visit his brother in the hospital.  He was sedated and never knew we were there. He had suffered a stroke the day before, and doctors were monitoring him closely for long-term effects.  The day after we visited, my niece telephoned and let Greg speak to his brother via speakerphone.  It was music to Greg’s ears.  Maybe his brother had turned a corner!

We visited again the following week, after my brother-in-law was transferred out of ICU to a regular room.  He passed a swallow test and cognitive exams, and though he was weak and very sore from all of the surgeries, plans were made to transport him the following day (Day 10) to a rehab in a city closer to home.  There he would work on regaining his strength and energy to care for himself and his personal needs at home.

However, things took an ugly turn after we left that day.  My brother-in-law became nauseous, then he suffered three bouts of cardiac arrest…and before 7:00 the next morning, he had passed away.  We knew blood clots, stroke and cardiac arrest were all possible side effects following surgery – this is the very thing that claimed my dad’s life following a surgery 16 years ago.  But we were still shaken.  My brother-in-law was less than one month shy of his 67th birthday.

So as we dealt with the sudden death of Greg’s brother, GREG succumbed to the respiratory virus…and my mother’s general health decline continued.  I had insisted on accompanying Mother and her husband earlier in the week to her clinic, where her doctor (who happens to be a close friend of mine) did a follow-up exam for Mother’s pneumonia.  He determined that she seemed to be clear of infection; however, he surmised that tumor growth was pressing on Mother’s lungs, preventing her from getting adequate breaths.  I could see that Mother felt very weak and tired…and she was struggling to breathe.  She also seemed unsteady on her feet.

I point-blank asked my friend if he thought that Mother was okay to travel to Houston the following Monday (this was Tuesday).  He told me, “I am not comfortable with her making that trip…BUT…her only hope is if they can do something for her at M.D. Anderson.”  He went on to say that he suspected that the doctors there would recommend “debulging” – surgery to remove the tumors that had grown and were pressing on Mother’s lungs and other organs.  My friend left the room, and I looked from Mother to her husband and asked, “If the doctors in Houston recommend surgery, are you going to do it?”  They both shook their heads in the negative and firmly said, “We’re not doing that.”  I silently wondered why they were still planning this trip.  And I told God, “I cannot fix this.  If Mother is not able to make this trip, YOU will have to step in and do something.”

New Year’s Day…the day after my brother-in-law died…I stopped at my mother’s house to check on her.  It was 10:30 a.m., and her husband said she was still asleep.  However, as I made my way to her bedroom, she stumbled toward me.  I watched as she staggered into the kitchen…fell into the refrigerator…then staggered to a cabinet, where she began to prepare a large bowl of cereal – sugary frosted mini-wheats.   This was not really a good breakfast for a diabetic, but Mother HAD said that at this point, the doctors said to eat whatever tastes good.  I asked if she could carry this bowl of cereal and milk to the table, and her husband stepped in and carried it for her.  Mother staggered once again…fell into the wall, and made her way to the dining table.  She trembled as she ate her cereal, and she was visibly disoriented and distracted.

I was concerned about what I observed, and I phoned my sister to let her know how I had found our mother.  My sister stopped in to see Mother on her way to work that evening, and she found her even more disoriented, in pain, wheezing, and running a high fever.  Mother’s husband was in their motorhome out in the yard, and Mother had been so confused that she could not dial his cell phone.  She was walking through the house carrying the mouse to her computer…she thought it was her cordless phone.

My sister and I got in touch with the doctor, and he told us to take Mother to the Emergency Room at the hospital.  It took me a while to get her there…she wanted to take time to shower!…but I finally got her in my car and drove her across town to our local hospital.  We put her in a wheelchair and rolled her into the Emergency Department, where a nurse triaged her and took all of her vital information.  Mother was able to answer questions about her medications, treatments, and more.

Then Mother was admitted to an exam room, where our favorite ER doctor (a high school classmate) was on duty.  He ordered blood work and a chest x-ray.  After the blood work had been processed, a nurse came flying into the room with orange juice, crackers and peanut butter, and she began to feed Mother. “Your blood sugar is 30!” she declared.  The doctor explained that with a blood sugar level of 30, most people cannot walk or talk…much less make any sense!  A subsequent blood test indicated that Mother’s glucose level was dipping even lower – the reading was 17.

The doctor said he could not let Mother leave the hospital with such a seriously low blood sugar level.  By all rights, she should have been comatose at this point.  He looked at Mother and said, “You are exceptional.”  Well, we all knew that!  He also said that the fever indicated infection somewhere in her body.  So six hours after we entered the Emergency Room, my mother was admitted to a hospital room, where IV glucose and antibiotics were begun.  It was determined that Mother had virtually stopped eating when she got pneumonia…but she was still taking medication for diabetes…and that bottomed out her blood sugar.  The medication was immediately ceased.

Knowing that I was exhausted from the virus I was just getting over AND the death of Greg’s brother, my sister left work and declared that she would sit with Mother overnight.  And she did…and for several more nights to follow.  I returned the following morning and met with the hospitalist, who ordered a complete round of tests for my mother…head-to-toe CT-scan…more blood work and x-rays. He told me, “She will not be going anywhere until at least Monday morning, and only IF she is 100% stable will I allow her to travel to Houston.” Mother continued to run fever and was not responding to the constant administration of glucose.  Her blood sugar level continued to be far too low.

By evening, the report on the CT-scan was in, and it was not good.  The tumors had almost doubled in size since late September.  One that was 10 cm in September was now 17 cm…and pressing on her lungs.  Another was pressing on the adrenal gland to her kidneys and causing her serious back pain.  And the fever was keeping Mother in a stupor.  She was hallucinating and “talking out of her head.”  A nurse suggested to my sister that perhaps it was time for Hospice care.

Sunday morning – January 3rd…the day of my brother-in-law’s funeral, I awoke EARLY.  I was back at the hospital by 5:30 a.m., sitting with my mother. When the hospitalist examined her mid-morning, we stepped outside to talk, and I asked her about Hospice care.  She said, “I think that is a wise choice at this point.”  Mother was clear enough for us to discuss this with her, and she said, “Yes, that is what I want.  I want this to be over.”  She said these words to me twice…“I want this to be over.”  She also said, “I want to go home.”

I asked the doctor if she felt I had time to attend my brother-in-law’s funeral.  She told me that she felt sure that I had time for that…but that Mother probably didn’t have many days left.  She encourage me to go and be with Greg and his family.  So a dear friend of Mother’s sat with her – and Mother’s husband – and I spent most of that day saying “Good-bye” to Greg’s brother.  It was an extremely hard day for all of us.  The Hospice team agreed to wait until I returned to the hospital late that afternoon to come out and start their paper work.

Monday morning, we made the final preparations to move Mother home.  It was January 4th. Christmas and New Year’s had come and gone, and it was all a blur for Greg and me.  He would still plug in all of the Christmas lights on our trees and decorations, so I came home at night to a warm and cozy house.  But the joy and excitement of the holidays had certainly come and gone for us now.

We got Mother settled in a hospital bed in her living room at home.  Her doctor told me, “I don’t think she will be on Hospice long.”  The nurses at the hospital whispered that it would probably be “only a few days,” and Mother’s doctor concurred.  Tuesday, two of Mother’s step-daughters arrived from Tennessee, along with other family members.  Both women are nurses…one a Registered Nurse, and the other a Nurse Practitioner.  They were life-savers.  They helped my sister and me with Mother’s care…and they helped their dad to come to grips with the fact that Mother was dying and would not recover.

It was a long week.  We were busy every day with helping Mother turn in bed, sit up, get to the bathroom and to the table for a few bites at mealtime.  She was so swollen and distended that she breathed better sitting upright.  So often, we would help her to a couch and sit with her.  Mother knew from the outset that she had very little time, and she was quite practical about it all.  One evening as I sat with her on the couch, she asked about Greg’s mother.  Having lost a son herself, my mother knew that indescribable heartache that she said was like no other.  I told her that Greg’s mother was doing okay.  Mother said, “She’s a strong woman.”  “So are you!” I reminded her.  “Well! There’s no other way to be!” she retorted.  She then asked about Greg.  I told her we were doing okay, and she said, “You and Greg both have a lot to process.”  I couldn’t hide my tears, and I didn’t even try.

Several times in the hospital – and in the days at home – I kissed my mother, held her close, and cried.  I couldn’t stop the tears…and we shared several tender, precious moments.  I told her at least once, “It is so hard to leave you.”  And by late in the week, I was staying virtually around the clock.  My sister still came in and out through the day, and she stayed at night, but I slept in my old bedroom…or I would doze on a couch near Mother.

My mother last spoke to me in the night of January 10th.  One of the last things she told me was, “I love you so much.”  Over the course of that ten days, we had more than said everything we needed.  We understood one another, what was happening, and what Mother’s wishes were.  At times, she would say funny things…other times she made little to no sense.  Once, when I excused myself to go to the bathroom, she sarcastically said, “GREAT!  Good for you!”  She hated her catheter!  And then a couple of days later when she was too weak to walk to the bathroom, she said, “I’ve decided this catheter is my friend!”


Timothy and my mother, August 2015
When my sister and I tried to walk Mother across the room to a couch, my sister became tangled in the dozens of feet of tubing, and Mother quipped, “I’m okay!  You just choked me with the oxygen…but I’m okay!”  My niece brought her three children to visit, and Mother loved hearing them play on the sun porch…the “ring-ring” of their tricycle bell, and the “quack quack” of some duck-billed noisemakers she had for them.  One by one, they would inch up to her bed and talk to her.  Four-year-old Zola even insisted on giving her kisses.

The Friday before Mother passed, my niece brought 3-year-old Nathan and stayed much of the afternoon.  Nathan played and “did his thing,” just like it was an ordinary “Friday at Granny’s” from back in August/September.  I commented to Mother that it was just like a regular “Friday with Granny” for him…and she added…”except this time I don’t have to watch him by myself!”  She also whispered to me one day as I lifted her from the bed, “I have probably done permanent damage to your body with this lifting.”  I assured her that I would be just fine…and I am.

Monday morning, I woke early and slipped out of the house and drove across town to my own home.  I took a shower and gathered clean clothes, repacked my bags, and returned.  Mother smiled at me when she saw me…but by noon, she was virtually comatose and did not respond to anything or anyone except to grumble in pain when we turned her.  After everyone went to bed that night, I sat with her as she tossed and turned and “talked”.  Her fever soared to 103.3 degrees, and she was terribly swollen and clammy.

I woke my step-sister, Suzanne (the R.N.), and she helped us ice Mother down with zip-loc bags filled with crushed ice and wrapped in towels.  We placed them under her arms and along her legs, and her temperature dropped by a good two degrees.  But we had to keep cooling her down for hours.  The next morning, a Hospice aide came to bathe Mother and dress her in a clean gown.  About 11:00, a dear cousin who was very close to Mother came for a visit.  She leaned in and talked to her, and then we stood beside Mother’s bed and caught up on the family and recalled memories of fun times we had shared.  I looked down at Mother, and her breathing had changed markedly.  Step-sister Suzanne noticed it, too, and ran to get her dad.

In a few brief minutes, my mother had stopped breathing and drifted away from us.  We kissed her and released her to go with the angels…to greet my dad and brother and others…and to meet Jesus face-to-face.  And she did exactly that.

The days have been a whirlwind and a blur since then.  People think that everything is over when you leave the cemetery.  In many ways, it’s just beginning.  There are business matters to attend to…thank-you notes to write…bills to pay…people to greet and entertain…and lots and lots of things to “process.” I finally took down our Christmas decorations on January 18th. My mother was a very wise woman in many ways…but probably the most profound statement she has made to me in years was that, “You and Greg have a lot to process.”  And we are still trying to do that.

In Mother’s last days, I continued to write my devotionals – when I could.  I missed a few days, but not all of them.  It was cathartic for me to spend time in reflection and Bible study…to pray about what to say…and to share my heart.  I posted an update each day on Facebook – the easiest way to answer everyone’s questions.  My mother had a LOT of friends and people who loved her, and they all wanted to know what was happening.  So I would write a “report.”  People would comment…and until Mother could no longer respond to us, we read her each and every word.  It was like hearing your funeral before you die.  Mother would tell me who certain people were when I didn’t recognize a name.  She would laugh and smile at the comments of her former kindergarten students.  One of her piano students said, “Tell her I wish I had practiced more.”  Mother said, “Write back and tell her there is still time!”

I am grateful for the gift of writing to be able to sort out my thoughts – to “process” what has happened.  I thought I understood grief.  The nineties were a great time of loss for my family, beginning with my father-in-law in 1992…my favorite great-aunt in 1993, then my maternal grandmother in 1994…a beloved cousin in 1997, another cousin and my baby brother in 1998…and my dad’s passing 13 months later in 1999.  Surely I had a handle on this!  Well, that’s baloney!  Each loss is different and leaves its own mark…and these two recent deaths have been a swift kick in the gut!

A friend told me that there are losses in life…but there is nothing that compares to losing your mother.  She was right!  In the last eleven days, I’ve thought of dozens of things that “I must remember to tell Mother.”  I’ve opened my e-mail account and anticipated her message…the report on her Sunday morning at church…what she and Lee watched on “Netflick” the night before.  I saw a friend’s Facebook post of pictures he took this past week in Yellowstone National Park – a place my mother adored, and where she and Lee spent last summer as Workampers…and I thought, “Mother would love that!”  Then I realized…she can visit there anytime she likes now.

In a devotional I wrote shortly after Mother died, I spoke of grief.  Greg and I took his mother to the cemeteries today to visit the graves of our brother…and my mother. January 23rd would have been my brother-in-law’s 67th birthday.  His birthday was our first time back at the cemeteries since the funerals.  I am not hiding from grief this time…or running away from it.  As I said in my devotional, to do so seems to say to God, “I don’t need you – I’ve got this!”  And nothing could be further from the truth.  God wants to console us.  He wants us to lean on Him and let Him do the hard work.  He wants us to cry out to Him when it all seems to be too much.  God wants us to let Him help us process all of this.

I don’t know how long it will take…or if I will ever be the same.  And that’s okay.  I know that I had an extraordinary mother who loved me as best she could.  Like any human being, she made mistakes…and she told me often that she had many regrets about her efforts to rear three children.  I assured her that it was all over and done…that everything was “good” between us. And I know that today, everything is better than good for her.  She is with Jesus…and my dad and brother and her best dogs, Spot, Otis and Carmen…and she is healthy and whole and tumor free…and “life” is very, very good.

And life will be good for us again at some point…until it is our turn to join the heavenly party, when it will rise to a whole other level!  Meanwhile, we will keep on processing all that has happened…all that will happen in the days/weeks/years to come.  And we will remember the lessons of our mothers…and fathers…brothers and others.  And with God’s help and grace, we will work through it all.

Wednesday, October 28, 2015

What's in a Haircut? A Reality Check...

When Timothy was about a year old, I took him for his first haircut. As the barber trimmed his curls and gave him a "big boy" shape, I watched our baby disappear before my eyes - and a toddler appeared in his place.  I used to take my grandmother for her weekly visits to the hairdresser, and I laughed at the contrast - the "straight-across-the-forehead" bangs of a one-year old vs. the softly teased white curls of someone in their late 90s.

But an experience last week was a total "first" for me...one that I did not expect.  I drove my mother to the beauty shop for a haircut to trim her hair to a one-inch length all over. This was in anticipation that any day, she would lose her hair completely as a result of chemo.  The trepidation felt by both our then-one-year-old Timothy and my 76-year-old mother was palpable...obviously, for very different reasons.  One did not understand what the man was doing to his hair...the other was probably asking herself, "How did this happen to me?"

I thought Mother's new haircut looked cute. We took "before and after" photos, and the hairdresser and I teased that she should use some gel and spike it up and "go wild!"  Mom barely laughed and said she would NOT be doing that!  A day or so later, she returned to the hairdresser with a wig that she had purchased but was not totally convinced she liked...and the hairdresser cut and styled it for her. 


Mom posted a picture of her new "do" on Facebook, and many commented how beautiful she looked - and how nice her hair was.  I think that was the only day she actually wore the wig.  She said since she mostly just lies around the house, there was no sense in putting it on for that.

Yesterday morning, I received an e-mail from my mom saying that her hair was coming out in clumps...and that her hairdresser would buzz her head for her - but not until the next day.  The hairdresser was busy and could not work this yesterday.  I "buzz" Greg's head every week.  We have clippers, and I know how to use them.  So I offered to come and buzz my mother's head.  She responded almost immediately and said yes...this would be a great help to her.

So I gathered the clippers and a bed sheet and drove to my mother's house.  We "set up shop" on her sun porch, and I clipped her already-short hair down to a fine "fuzz" all over her head.  She's not slick-bald yet...but she probably will be soon.  Once we were finished, Mother got up and tied on her little cotton turban.  "Aren't you going to look in the mirror?" I asked.  "No!" she emphatically responded.  And several hours later, she told my sister that she still had not looked at herself in the mirror.

I didn't think Mom looked that bad without her hair.  I don't know what I expected...and maybe it's because I do buzz my husband's head every week with the clippers. I am used to that "look".  But I did have the sense as it was happening, "What am I doing?"  And then I remembered...Mom's hair is falling out in clumps anyway.


We are only one treatment into this journey, and so far, my mother has pretty much had one "normal" day in the last three weeks where she felt "good" all day long.  And she made the most of it, with a trip out for lunch and to the Dollar Tree. She stuffed Halloween treat bags for the children.  She worked on her blog posts and answered e-mail.  Many days, she has been able to do small tasks for a few hours...but ultimately, she has ended up back in bed - or on her couch...drained...spent...totally exhausted.  

We are told that the treatments have a cumulative effect.  We're also told that some people start to feel "normal" just in time for the next treatment.  It's so early that we still don't really know what to expect.  This Thursday, Mom will get her "port"...and then she will have a 3-hour chemo treatment, as well as blood work and a visit with her oncologist.  Maybe we will know more about what lies ahead after all of that.

Mom's surgeon explained to her that her chemotherapy drugs attack cells that are dividing...and cancer cells divide.  So do the cells that make up hair follicles...hence, the hair loss.  It's daunting to think that the poison that can kill cancer cells - and cause you to lose your hair - could also be healing you at the same time. 


I told Timothy that his hair would grow back...and it has, over and over again.  We've made numerous trips to the barber shop...and in recent months, Timothy's Granny (my mother) had taken on that task.  Hopefully, in time, HER hair will grow back...and maybe they can once again make these trips together.  For now, we'll all step in to do what must be done and pray that the drugs are working...and that we are headed in the right direction.  After all, it IS just hair...right?

Monday, October 12, 2015

This Sandwich Has a New Slice of "Bread"

My mother...Arline Chandler Smith
Life has a strange way of taking turns you never expected.  When my 76-year-old mother began to complain of pain and soreness in her abdomen last February, I thought little of it...particularly given that her long-time internist in Little Rock did not even examine her when she mentioned it to him.  In fact, he brushed it off and said, "You're not telling me anything that raises concern."  But the pain and discomfort continued through the summer.  And a few months after Mother's internist told her that this was nothing to worry about, he was arrested and charged with running a prescription painkiller ring from his office.  He now faces federal charges, as well.

So Mother found herself without a doctor, and after praying about what to do, she opted to start seeing a nurse practitioner at a local clinic.  Her thinking was that this person could at least refer her to specialists who drove the 65 miles from Little Rock to practice in the outpatient clinic at our local hospital.  Mother mentioned the pain to her NP, who suggested maybe she needed to see a surgeon for an endoscopy.  This was in August...the first available appointment for a consult was November 12th.

Greg pushes Zola in a swing installed in the
backyard at Mother and Lee's house. Behind
them is the platform for the new playhouse.

Meanwhile, Mother was going about her busy schedule pretty much as usual.  She and her husband, Lee, traveled to Tennessee in July for a family reunion.  She tended to Lee as he saw doctors about health scare that some thought might require surgery.  Thankfully, Lee is healthier and stronger at 77 than many men in their 30s, so he is in "watch-and-wait" mode with his health issue.  He put a new roof on their house last spring, and after getting his "good" diagnosis this summer, he set in to build a play house in their back yard for my great-niece and nephews...Zola, Timothy and Nathan.  Lee and Mother had installed a new wood fence around the yard a couple of summers ago, and he saved the fence boards.  They are now being repurposed into a playhouse - complete with front porch, pitched roof, and windows!

Mom offered to keep our 3-year-old great-nephew on Fridays while my niece and her husband work.  The other two children are in school, but a place was needed for Nathan.  Greg and I kept him this summer on Mondays and some Fridays and other weekdays...but Mother wanted to take the "Friday shift."  She enjoyed several visits from Nathan...and my niece, Jasmine would come after work and bring Timothy and Zola and spend an hour or so visiting and letting the children play in the back yard.

All of this changed on September 21st, when Mom awoke with what she thought was a UTI.  We laughed, because she immediately "doctored" herself with Cipro, an antibiotic that she had purchased at the "pharmacia" in Mexico while she and Lee wintered in Arizona.  In fact, she messaged me before noon and said, "I'm much better already, and I feel silly to go to the clinic.  But I guess I will go ahead and keep my appointment.


At the clinic, my mother saw another Nurse Practitioner.  She mentioned again the pain in her abdomen...and this woman examined her.  "Your stomach is 'hard'," she told Mother.  She ordered a CT scan at the hospital for the next morning and told my mother that she would call in the afternoon with the results.  Before noon, she had phoned to say, "You have a mass in your stomach, and you need to return to the hospital for blood work.  We will probably order a biopsy."

My mother is an avid traveler.  She is a free-lance writer, author of eleven books, and weekly contributor to a website for RVers - RVLife.com - where she maintains a blog about her travels with Lee in their 42-foot motorhome.  When Mother received this news, she had a PR trip planned to Branson, Missouri - which is something of her "second home." Businesses and attractions in Branson were hosting writers and media people from across the country for the weekend.  It would be almost 3 days of good food, great shows and entertainment, and topnotch hospitality.  Mom got the blood work done and opted to go to Branson.  She and Lee returned home late Sunday evening.

Monday morning, I got an e-mail from Mother..."I have a serious problem, Debbie. The tests show cancer markers and it’s my ovaries. But there is more than one mass. [The Nurse Practitioner] has blocked off an hour to talk to me—to us—in the morning at 10:00, unless they can do the biopsy tomorrow. She offered to come to my house and talk to us tonight—in fact, she said she felt so heavy about this that she almost called and asked to come last night. I want you and Suzanne [my sister] to go with me to talk to her, as well as Lee. This is going to be OK—no matter what. Just going to be a battle ahead." 

So the following morning, Greg and I met my mother and Lee, and my sister Suzanne, at the clinic.  We all squeezed into a tiny exam room where the Nurse Practitioner came in and introduced herself to each of us, then sat in the floor with her laptop and a folder of test results...and she began to give us the "report."  Mother has multiple masses, ranging in size from 2.5cm to 10cm...and they were all over - near her liver, in the lower quadrants of her pelvis, and floating in her abdomen.  None were thought to be attached to organs.  While the CA125 blood test for ovarian cancer is not reliable - often giving a false negative - Mother's did indicate a positive.  "Normal" range is less than 30...my mother's count was 300.  The nurse kept telling her how sorry she was.

I guess I was in disbelief.  Mother had not seen a doctor.  Perhaps this was all a mistake.  But a biopsy was scheduled for that Thursday morning in Little Rock.  Mother would not let us go with her...Lee drove her down for the procedure.  After the biopsy, she did ask if I would keep Nathan on Friday...she realized that she was too groggy and sore to manage him.  She was scheduled for a consult with the oncologist on the next Thursday.  After Mother and Lee met with the oncologist, they came to our house and met with Greg and me - and Suzanne - and delivered the official report.

The oncologist felt like all indications were that this was ovarian cancer; however, he wanted to examine blood work and get a PET scan to be sure. Those have now been studied, and his best guess is that an ovary ruptured and "spewed cancer cells" throughout my mother's abdomen. The good news is that there is no spread beyond the abdomen - nothing in the chest and beyond.  The oncologist is treating this as Stage 3C Ovarian Cancer...and aggressive chemotherapy was begun on Thursday, October 8th.  

Mother got IV drugs for nausea - and steroids - and then she spent the next three hours receiving  Paclitaxel (conventional) and Carboplatin.  On Friday, she got a shot of Neulasta to boost her immune system - to the tune of $5000.  Thankfully, she is told that her insurance company will cover this.  But she must have Neulasta after each of her chemo treatments, which are scheduled for every 3 weeks.  Her oncologist told her that within 2 weeks of this first treatment, she will begin to lose her hair.

Mother felt GREAT after the treatment...like she could climb a mountain (the steroids).  She didn't sleep much Thursday night, but on Friday, she still was energized...until sometime late afternoon.  She thought maybe it was the Neulasta, but she had a "small sinking spell" while shopping and hurried home.  Saturday she laid around and did not feel well...by Sunday, she had all of the side effects - nausea, vomiting, diarrhea, body aches and pains.  The only thing missing was hair loss...and she is bracing for that.  She feels lousy...is in bed a lot...and her world has been turned upside down.

In the course of less than a month, my mother has gone from planning her next trip to planning a trip to buy a wig when her hair falls out.  In the course of ten days, she has gone from spending a happy Friday with her 3-year-old great-grandson and an hour or so of play with her other two great-grandchildren and their mother to being unable to sit up and answer e-mail at her desk for more than an hour or so before returning to bed.

I will tell you...I feel pretty helpless.  I want to do for her...and there is nothing to do.  She said, "Keeping the children is helping me.  If you will keep Nathan on Fridays, that will be your part."  Somehow, it doesn't feel like enough - and yet, I know that more "opportunities" to "do" will come in the next few weeks and months.  So Friday, I kept Nathan.  Sundays after church, the children come home with us for a few hours, and we did that yesterday.  Today there was no school for Timothy, so both he and Nathan came to my house for the day while their parents worked. I take the two oldest children to Taekwondo lessons on Mondays and Tuesdays...so tomorrow, we will go to our class.  Mother keeps e-mailing me and thanking me for doing these things for the children.

Timothy rides his tricycle on Mother's carport.  They recently
bought the kids this tricycle - complete with bell and tassles!
I am still trying to process all of this in my own head.  The children do not know about my mother, other than that Granny did not feel well Friday, so Nathan came here.  At six years old, Timothy is incredibly sensitive about old age and death.  He thinks that anyone who gets sick - or old - "will die like Mam-ma Polly."  He remembers her death...and paired with the deaths of two beloved family pets who were old and sick, he has formulated the idea that when you are sick or get old, you die!  And this worries him.  When Mother starts to lose her hair, the children will have to be told something...but we have a few days until then.  And her doctor has told her that she is to avoid sick people and small children...so her contact with them will have to be limited anyway.

Nathan sits at our kitchen counter
during one of his Friday visits.
So my days are once again filled with children and their activities...and caring for a loved one at the other end of the age continuum - as much as she will allow!  I really anticipated caring for my mother when she was 90...not 76.  And I'm really not sure what to do with all of this information just yet.  I am trusting God to take me by the hand and lead me, because I feel like we're all somewhat fumbling in the dark at this point.  I know that He is more than able...and that He has my mother - and all of us - in the palm of His hand.

For now, I commiserate when Mother sends an e-mail to tell me she is going back to bed...and I color another picture with Timothy and play "superheroes" with Nathan or read a story to Zola.  It's doesn't seem like enough...but somehow, for now...it is.