Reluctant Caregiver: The Pros and Cons of Hiring Your Own Caregivers

help wantedYou’re struggling to hold down a job and take care of your mother with dementia.  You need help!  Do you hire caregivers on your own, or sign up with a home care agency?

Before you decide, you need to take stock of your resources.  How much money is available? How much time and patience do you have to manage the process?

Here are a few things to consider while you make the decision:

Benefits of hiring caregivers on your own:

  1. You get to choose them. You can sift through as many applications and interview as many people as you wish, until you find the right fit – for both you and your loved one.
  2. Your house, your rules. Agencies have rules about what their employees can and can’t do.  Need the aide to take out the dog?  Drive Mom to the doctor?  Give Dad his insulin shot? Some agencies prohibit such tasks.
  3. You can communicate directly with your caregivers. Many agencies don’t let their employees have the client’s telephone number. This is horribly inconvenient, but designed to keep aides from working “off the books” for a client.
  4. Not working out? No problem! If something goes awry, there is no middle man to get in the way. You can simply fire them on the spot (this could also be a con).
  5. You set the schedule. Agencies often assign their employees to more than one job in a day.  If their relief didn’t show up at the house before yours, or they run into traffic, you could be faced with skipping your own doctor’s appointment or leaving Mom alone.  You can also offer things like their birthday (or their kids’ or significant other’s birthdays) off – little perks that make working for you a little bit better.
  6. You set the pay rate. Agencies need to make money and pay their overhead; therefore, they pay their employees less than they would make at a private duty job.  Caregiving is hard – you know, that’s why you need help – and those aides who are paid fairly tend to do a better job. I also paid overtime on days that aren’t considered bona fide holidays by most agencies – Christmas Eve, Mother’s Day, Valentine’s Day, etc.  Nobody wants to have to work on a day that is special to them.
  7. It’s cheaper. Agencies charge upward of $18 an hour, while paying their employees a fraction of that.  I know one client who paid their agency $21 an hour, while the agency paid the personal care aide $9 an hour.  I’ve hired aides who made minimum wage ($7.25 an hour in Virginia) at an agency.  No wonder aides quit to work retail or in the fast food industry – if you’re going to be making minimum wage, flipping burgers is a lot easier than wiping butts.
  8. Employees are plentiful. Many agencies are understaffed and can’t meet the demand for their services.  There can be a waiting list of days to weeks – which makes it difficult if you need to go back to work right now.  Place an ad on care.com or another platform offering a decent wage, and you will be inundated with potential employees.
  9. You do your own background check. Sure, agencies conduct the standard background check offered through a service or a local police agency. Depending upon state laws, they might hire an employee prior to doing the check, then dismiss them later if something disturbing appears.  In addition to the traditional check that you can conduct for a small fee (usually $30-$50), you can delve deeper into the employee’s background.  Sure, they list references, but you can talk to others at their previous places of employment.  You might call a former instructor.  Stalk their social media accounts.  Agencies don’t go to that much effort, but you will.  After all, these folks will be practically living in your house.
  10. Bonuses. Most reputable agencies prohibit their employees from accepting bonuses or gifts from clients. But as an employer, bonuses are a valuable way to keep up morale. I gave bonuses on the employees’ birthdays, as well as at Christmas.  I gave Mom’s day aide – who had the brunt of the mess (and smell!) when Mom had c. diff – a special “poop bonus.”  Appreciation works.

While hiring your own caregivers could be more economical and better for your family, there are some serious reasons why you shouldn’t take it on.  Here are some of the cons of hiring your own caregivers:

  1. Payroll. While there are numerous programs and apps to make it easier, you still have to do it. Track hours, write checks or send money transfers, and the worst of all – pay taxes.  Yes, you should do this.  While it’s easy to pay someone “under the table,” it’s also illegal.  And it deprives them of paying into essential programs like Social Security and Medicare.  They will thank you one day.  Really.  Agencies take care of all of the bookkeeping and paperwork.
  2. Red tape. This is related to payroll. If you hire someone to work in your home (or your loved one’s home) and pay them more than $2,000 a year, you are considered a “household employer” by the IRS and state tax departments.  You must obtain a Federal Employer Identification Number from the IRS.  It’s a fairly simple, online process.  Different states have different rules for withholding and paying taxes as well as signing up for the state’s unemployment insurance program.  Also, the state and feds might have different schedules.  For example, household employers can pay their withholding and “nanny taxes” when they file their personal tax return.  Some states require quarterly reports, and there is a penalty if you don’t get them in on time.  I know – yours truly paid a hefty sum to the Commonwealth of Virginia for procrastination. Agencies eliminate the need to declare yourself an employer.
  3. No backup. Someone is sick, or their babysitter doesn’t show up, and they can’t come to work. You have to scramble to get someone to cover.  Agencies often (but not always) have someone else they can send to fill in for the absent employee. They also are more likely to have someone who can stay overnight if you travel for work or pleasure.
  4. You’re the boss. With the control of doing your own hiring and firing, you get the responsibility of doing the hiring and firing. You can’t blame something on the big bad boss at the agency – you have to discipline the workers, and even fire them, if necessary.  Not fun. Agencies take on the Big Bad Boss role for you.
  5. Medicaid. If your loved one runs out of money and needs to sign up for Medicaid, the state-federal health care program for low-income people, already being signed up with an agency that participates with your state’s program will help immensely.  Even if you opt for “consumer-directed” Medicaid services at home (where you hire your own aides), you still need an agency to accept the Medicaid payments and pay the caregivers.  The program won’t pay families or pay your caregivers directly – you have to have a “Medicaid facilitator.”
  6. Insurance. If your loved one has long-term care insurance, using an agency will make the process much easier.  Depending upon the terms of the policy, you might not be able to hire people on your own.  Providing the documentation and paperwork will fall to the agency, which is a load off of your shoulders.  Also, if your loved one needs equipment such as a wheelchair or hospital bed, agencies have contacts and expertise to make this happen without adding to your task list.
  7. Liability. Your Mom’s aide hurts her back lifting your Mom off the toilet.  That’s a worker’s compensation issue.  An agency is covered.  Are you?  If the employee abuses your loved one or steals from you, the agency has procedures as well as insurance to cover it.
  8. Licensing. Licensing issues for Certified Nurse Aides or other professionals are murky when it comes to household employment.  This is both good and bad.  For example a CNA for an agency or facility can’t give medications or injections, even if they know how.  There isn’t that oversight in your home, which can make life easier for you.  However, if they do something like abuse their patient, do drugs, or otherwise break the rules of their profession, you would want to deal with that with the state licensing authority.  Having an agency with a pipeline to the licensing organization makes that easier.
  9. Contracts. You really should have contracts with each of your employees if you are hiring yourself.  If you use an agency, your contract is with the business to provide the services.  They take care of their own employee contracts.  Less work for you.
  10. Bridging distance. If you don’t live near your loved one who needs help, it can be very difficult to recruit and manage caregivers from afar.  With an agency, you have a level of supervision and management.

Regardless whether you use an agency or hire caregivers on your own, research is essential.  Make sure you do your homework before you dive in. If you are considering hiring your own caregivers, the IRS has a handy guide for household employers.  You can compare home health agencies on Medicare’s website.

 

Ginger Thompson has been a family caregiver since 2015. 

 

How the System Fails the Frail

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Mom with her grandog Pixie at the SNF that kicked her out because she couldn’t pay a month in advance.

Today for me was a lesson in how the long-term care system is failing.

Mom was home a little over 24 hours last week when she had to go back to the hospital. She became unconscious when we had her in the lift changing her Saturday evening. I had already had to call the paramedics on Friday, about 2 hours after she came home, because she slid out of her wheelchair and I couldn’t get her up.

She was discharged today to a Skilled Nursing Facility (otherwise known as a nursing home with a physical therapy department) for rehab.

After she was in the ambulance on the way to the SNF, the SNF received a Notice of Denial of Medical Coverage from Humana, her Medicare PPO. I got on the phone and filed an expedited appeal, which takes 72 hours.

Meanwhile, the facility admissions director was telling me that since she was coming in as private pay, I needed to go to the business office and pay for 30 days up front, or $8,280. I told her I couldn’t do that, but I would pay for a week up front to leave her there long enough for me to get things ready to bring her home.

I was standing in the social worker’s office, explaining the appeal and how it will take 72 hours, when the Executive Director came to the door. He’s a tall, burly man, with a crew cut, and a sour look. Standing in the hallway, he told me quite tersely that I needed to go to the business office and pay for 30 days. I told him I didn’t have that much, but could pay for a week. He said no. I asked him why, and he said, very rudely and loudly, “Company policy! If you do not pay for 30 days, she cannot stay! She has to leave now!” He was getting really loud. I was crying. People in the hallway and lobby were looking at us. I looked at the social worker and said I would take her home. He said, “Good!” and spun and left.

This was the same SNF she had been in just a week prior.  Her Humana Medicare PPO had required her discharge on Sept. 2, but I kept her there a week on private pay, to a tune of nearly $1,700, in hopes of winning an appeal.  I didn’t.  Ironically, I got word that my appeal was denied yesterday, too, just a couple of hours prior to this incident.  Had Humana authorized her to stay longer, she probably wouldn’t have ended up back in the hospital a little over 24 hours after coming home.

Apparently, Humana has given up on Mom — believing she can’t improve with rehab.  No matter that she walked with a walker prior to her first hospital admission on June 26.  Who would be able to get around well after spending the most of two-and-a-half months in a bed?

The ambulance company brought Mom home and put her in bed because I can’t transfer her from wheelchair to bed, etc. One of the aides I use works at the assisted living facility where Mom used to live, and is trying to rustle me up some extra help.

This is an example of how the system sets people up to fail. Denying her rehab means she will continue to decline. This is how people die. And this is how family caregivers have nervous breakdowns, have to quit their jobs, etc. Luckily, I have a job that is flexible with a company that “gets it.”

Something has to change. As our population ages, more and more of us will need help like Mom. And there are more and more of us to slip through the cracks of the system.

Be aware. Plan. Save. Most importantly, advocate for the frail.

A day in the life of a #ReluctantCaregiver

118142600_8f7251c825_bIt was 1:44 a.m. on a Thursday morning when the electronic box by my bed started blaring a very loud tune that was way too cheerful for the hour.  It meant Mom had pushed her “call button,” a wireless device I had purchased so that she could summon me when she needed help.

I jumped out of bed and, in a zombie-like state, headed for the stairs.  When I arrived in Mom’s room (previously the master bedroom), the lights and TV were on, as always.

“What’s up?” I asked.

“I’m cold,” she answered.

Mom complains daily that my house is too cold.  At an average of 75 degrees (my heat pump is on its last legs and I can’t get it any cooler), I think it’s rather balmy most of the time.  Mom wears long sleeves and a sweater, or wraps up in a blanket, as she goes about her day.  But at night, she insists on sleeping without covers.  Her feet, especially, must be exposed.

This is the second time she has called me to cover her up.  I make a mental note to make sure the sheet and comforter are within her reach next time.  I cover her up, and head back to bed.

At 7:24 a.m., the machine blares more annoyingly perky music.  I had hoped Mom would sleep until her aide arrived, but not today.  She has to go to the bathroom, so I help her get up.  She complains again that I took away her bedside portable commode at the behest of her physical therapist.  She needs the exercise of walking to the bathroom if she is to regain her mobility.

She’s wet, so we begin the process of cleaning up and dressing.  I insist she wash the parts she can reach, and wash the healing pressure ulcer on her bottom with wound cleanser spray.  Then I slather her in Calmoseptine ointment — a kind of diaper rash cream for incontinent adults.  I check her blood sugar and write it down in the chart I created to track her health and activities.

The hardest part is the compression stockings.  I bought her some snazzy argyle ones — and they are just as difficult to put on as the hospital-issued ones.  I sit on the hard bathroom floor and finally get them on her.

Breakfast is next — tricky for someone with kidney failure.  Not too much protein, sodium, potassium or phosphorus.  Cereal with blueberries and coconut milk, coffee with coconut creamer, and a dinner roll with coconut spread (we’re avoiding dairy as much as possible). It seems like a bad meal for a diabetic, but you can make up for the carbs with insulin.  There’s no way to counteract the excess phosphorus, protein, and potassium in foods like eggs, oatmeal, orange juice or bananas.  A diuretic takes care of the sodium, but we still watch her intake and try to keep it under 140 mg per serving.

Finally, her aide arrives.  I fill her in on the morning progress and head upstairs and back to work.  I’m lucky that I have a flexible job that permits me to telecommute regularly — otherwise, I could become one of those family caregivers who has to take a leave of absence to care for a loved one.

During the day, I try to stay hidden away so that I can work.  The occupational therapist arrives; I greet her and return to work.  The home health nurse is next — I have to be there to help Mom answer questions, because she doesn’t remember her symptoms.  The nurse checks the sore and declares it healing.  Yay!  A victory!

At 1 p.m. the aide from an agency that I reserved through a “backup care” benefit offered by my employer comes to relieve the morning caregiver.  While I work from home, I have found it difficult to be interrupted every 40 minutes when Mom (who has urge incontinence that is probably due to her dementia) has to go to the bathroom.  So I called in extra help until she is strong enough to make it to the restroom alone.

My dog needs to go out, so I take her out to the front yard.  When we come back inside, she decides to scoot her butt along the wood floor and all of the throw rugs — making a mess two days after the housecleaner had mopped.  I decide to take care of it later and return to work.

The rest of the afternoon rolls along smoothly, with the aide keeping Mom company and helping her out by getting snacks, refilling her water-glass, and making sure she changes position regularly.  And of course there are the frequent bathroom trips.

The aide leaves at 5:30 p.m., and I take my computer downstairs and continue to work, in an effort to avoid too many trips up and down the steps.  During one of her bathroom breaks, I mop the floor.

After about an hour, I start dinner.  I’m putting rice on to cook when Mom calls me to help her go to the bathroom. Again.  I get her settled on the toilet and go to check the rice, hurrying to the stove — where I step, with bare feet, on my dog’s bone.  The hours of her gnawing on it have sharpened it into a dagger, and it’s sitting on the floor like a jackrock.

I scream with pain as the sharp bone punctures the bottom of my right foot in the arch.  I hop around a bit, cursing the bone and the dog.  Finally I hop into the bathroom where Mom sits on the toilet.

“Is something wrong?” she asks with a deadpan look when she sees the tears on my cheeks.

“Didn’t you hear me screaming in there?!” I ask.

“Yes, I wondered what was going on,” she said.  It was obvious she had forgotten hearing my hollering.

She offers to help me clean up the wound and bandage it, so I hold my foot over the bathtub and pour hydrogen peroxide over it, leaving a trickle of blood going down the drain.  Mom applies a bandage, and I help her get up and back into her recliner.

At dinner, she claimed not to be hungry, but ate a steak, rice, and a salad.  Then she asked for dessert.

We sit on the porch and I drink wine while she repeatedly asks why I don’t have blinds on the porch.  I’ve learned she hates the dark, and insists on pulling the curtains as soon as dusk arrives.  I repeatedly answer that I enjoy looking out into the dark.  She repeatedly asks if anyone (meaning an aide) is coming tomorrow, who is coming, and what time they will be there.  The answer is always the same:  “Yes. Ashley. 8:30.”  I’m used to the repetition and don’t let it bother me.

By 9 p.m., I’m exhausted and head her to her bedroom.  She complains it’s too early to go to bed.  I insist that I’m tired and need to retire to my quarters.

The bedtime routine ensues — blood sugar check, insulin shot, cleaning up, nightgown on, teeth brushed.  Then the hard part — the adult “nighttime” diaper that her experienced aide advised she wear.  Unlike the Depends she wears during the day, this garment has tabs like a baby diaper.  She can’t stand up long enough for me to fasten it.  Attaching it while she’s sitting causes it to sag.  She complains about the sag.

I give my usual answer:  “Sorry, Mom, I never had kids.  I don’t know how to do this stuff.”  She laughs.

Within 40 minutes, she’s in her hospital bed, bare feet propped up.  No covers.  The woman who has been freezing all day is now overheated, even though she is more scantily clad.

This time, I push the sheet and comforter beside her on the bed and make sure she can reach it.

My glass of wine and I go upstairs — so that we can do it all again tomorrow.

Ginger Thompson is one of more than one million family caregivers in Virginia who take care of a relative at home in order to keep them out of facilities.  She feels very lucky to have flexible work hours, the ability to telecommute, and the financial resources to hire experienced caregivers to help her care for her mother, Helen, who suffers from kidney failure and mid-stage dementia.  Follow her on Twitter @gingwrites, with the hashtag #ReluctantCaregiver.  Her mother’s anecdotes are hashtagged #HelenQuips.

 

#ReluctantCaregiver: Dimensions of dementia

Dementia-75Today my Mom thought she was in the town where she grew up.  Everyone she saw, she thought had some connection to her hometown.  It doesn’t matter that she hasn’t lived there in 40 years — that’s where her mind resides today.

While waiting for a CT scan, we ran into an aide who works at the assisted living facility where Mom lived until she moved into my house two weeks ago.

“How’s everyone in Webster?” Mom asked her, referring to her hometown deep in the West Virginia mountains, hundreds of miles from here.

Being accustomed to dealing with people with cognitive issues, the aide deftly handled the question without correcting Mom.  What I found most interesting was that Mom was so happy to see a familiar face.  Fortunately, she has forgotten that she wasn’t particularly fond of that aide.

After her doctor’s appointment, where we learned that she does NOT have lung cancer, the disease that killed her mother and maternal grandmother, we returned to my house.  On the way into the neighborhood, she asked, “Are we going to your house or my house?”   I just answered “Yes.”

That’s the wrong answer.  I should have said, “Your house.”  My answer was probably confusing to her, or shaming to her for forgetting she now lives with me.  The question was one she always asked after appointments.  Sometimes we would return to her assisted living apartment, while other times we would come to my house and hang out, have lunch, and play with my dog.

Now she lives in my house, and the master bedroom suite is set up in a way that is similar to her former apartment.  I’ve moved upstairs, cramming my bedroom furniture into a room a fraction of the size of the master.

The private aide I hired to help me take care of Mom finally convinced her to write Easter cards.  She proudly brought them to me, saying Mom would only write two, even though I bought her 12.

I glanced at the envelopes.  Her handwriting isn’t the neat cursive it used to be.  It sloped down the envelope at an angle.  But the most glaring issue was that the card addressed to my sister used my sister’s first name — but the last name of Mom’s sister.  The card addressed to my niece and nephew included their first names, but again, the last name of my mother’s sister.

Mom’s sister died in 2008.  Usually, Mom forgets that information.  She has been forgetting it for quite some time. Last week she remembered her sister’s birthday.  I couldn’t ascertain whether Mom remembered that she had passed away.  Perhaps she remembered this time.

Every now and then Mom has been confusing my sister with hers.  She remembers her sister as she was in the 1970s — a young married woman with two little children struggling financially.  I believe that is a better memory than the one of her laying in her casket, victim of a devastating disease at the age of 57.

My sister’s life is currently similar to our aunt’s in the 1970s — except it’s more than 40 years later.  She has two small children, and her husband was unemployed for a time, causing financial stress.  Their names also begin and end with the same letters and both are two syllables.  At first one might think she is simply misspeaking — but in reality she has the two women confused.

I hired two caregivers to help take care of Mom.  One is here on weekdays, the other weekends and one evening during the week.  Mom is very fond of the day aide; the evening/weekend CNA, not so much.  Every evening she asks at least five times, “Who is coming tomorrow? What time?”  Each time, the answer is the same.  When she wakes up in the morning, it’s “Is someone coming today?  What time will she get here?”

I was fortunate to be able to get the same physical therapy assistant to work with Mom at my house who helped her in assisted living.  She loves the man, and will walk through the house without complaining with him by her side.  When her caregivers or I encourage her to walk, she complains.  I finally realized why she likes him so much — she thinks he’s a guy from my hometown.  When another home health care staffer asked her if she knew him, she said, “I’ve known him all his life!  We used to go to church together!”

Mom also occasionally melds her two husbands into one person, attributing something one of them did or said to the other.  However, she can deftly tell you that she was 52 when my father died, and was single for 11 years before she remarried.  She can’t tell you how long ago her second husband died.  Sometimes she gets the month and year right, but rarely remembers in what city she resides.  She is clueless about the street address.  She will  wrack her brain for the name of the President of the United States (I think she wants to forget).   She also can remember a random comment someone said to her 50 years ago, but can’t remember what she ate for breakfast.

Many people think that Alzheimer’s and related dementia are all about memory.  Memories of past activities or people are not the only thing a dementia-afflicted brain forgets.

Mom’s physical symptoms of the disease have recently become more pronounced; namely, she eats a lot more than before.  She will say she’s not hungry, but then eat a complete meal and ask for more.  This is because she forgets she has eaten.  She also has become more incontinent.  This is because her brain forgets what it feels like to have to go to the bathroom. Conversely, sometimes she has to go to the bathroom all the time — this is because the urge to go is overwhelming and new for her, because she forgets what it feels like or how to “hold” it.

This is our new reality.  This is dementia.

 

 

 

 

An Open Letter to Keysa

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Dear Keysa,

I’ve tried to avoid making my search for you so public.  Ever since I felt compelled to find you, and told The Hunk I would try, I thought I could find you easily through social media.  After all, almost everyone – except, ahem, The Hunk – uses Facebook, Twitter, Instagram, and other sites.

But you have been elusive to me.  I am pretty certain I found you on Facebook.  You have an obscure profile photo that might be stock art.  You have very little public information visible.  But there is enough for me to think that you are the one with the photo of a woman standing on what could be a sand dune, arms outstretched.  I’ve sent countless emails and Facebook message requests asking people with your name to contact me. Several women named Keysa have written me back, politely explaining they aren’t the one I seek and wishing me luck.

What I’ve been able to piece together is this:  you have a child with a disability, you struggled with fertility about 13 years ago (your middle child should be about 12 right now), and you worry about your kids.  You might be a domestic violence survivor, and you have a serious beef with the military.  You support an organization that helps special needs children.  Your ex-husband obtained a child support judgment against you five years ago. You likely live near your hometown of Fallbrook, CA.

It’s been a decade or so since you changed The Hunk’s life.  I’ve known him for nearly seven of those years – or more than half that time – and he just recently told me the entire story.  The woman he married about nine years ago (and who left him two years ago) didn’t know.  His current girlfriend doesn’t know.  His parents, children, colleagues and friends are completely in the dark.  Only a male friend and I know the full story.  And I’m sure that I know more than anyone else, because guys just don’t talk about feelings with other guys.  That’s why I want you to contact me.  I’m the only one who knows the whole story, and the only one who can help.  It’s a huge responsiblity, and I take it seriously.

You met him on an online dating site and he fell hard for you.

“When Keysa responded, I thought for sure her pic was a fake.  She was drop dead gorgeous.  I’m talking head-turning kind of beautiful,” according to The Hunk.

When you finally met, he learned that you really were a beauty.

“My jaw dropped,” he told me. “I literally felt my jaw drop and my mouth was hanging open.  She giggled and I couldn’t believe she was real.”

I’ve never heard him talk this way before:  “She was SO much fun —  down to Earth, real (or so it seemed), highly intelligent, personable, no airs or thinking she was all that, just…perfect.  I fell head over heels for that girl.  She was 32 and I was 38 at the time…I was smitten.  It was October and we went EVERYWHERE together.  We cooked together, we took trips, we were all over town wining and dining and seeing movies and dancing and just having the times of our lives.  We were inseparable.  We couldn’t take our eyes off one another.  We spent Thanksgiving and Christmas and New Year’s together and had a phenomenal time.  It was the best time of my life.  I have never been happier or more content.”

He thought you fell for him, too.  When he told me the story, I sobbed.  I still cry when I think too much about it.  But after he told me, I suddenly understood him even more completely than before.

Keysa, you were The One.  You were The One who changed his life.  Most people would say you ruined his life, but I know better.  For the first time, when he fell in love with you, he let his heart triumph over his head.  Before you, and since you, his relationship decisions have been made based upon logic – the head wins, every time.

That is the real tragedy.  Not the horrid aftermath of your romance.  Not the abrupt ending of a promising career, or even the heartbreak he suffered from losing you.

You changed him for the better.

That’s why I have to find you.  He needs to know how the story ends.  He tried unsuccessfully to find you a few years ago.  He heard that you fell on hard times, that your children don’t live with you, and that you had some very serious struggles.  Maybe you still do.

Your kids were easy to find.  They seem to be doing well, and I get the impression you aren’t part of their lives.

I have to admit, Keysa, I doubt the sincerity with which you entered your relationship with The Hunk.  I know that he is incredible – tall, lanky, and handsome with dreamy blue eyes.  He is intense.  And he has certain attributes that women talk about with other women after they have had too many cocktails.

He’s also incredibly kind, generous, and a good friend.  He has an unflappable, amiable personality.  He’s a lot of fun – unassuming.  He tends to attract needy women who take advantage of his kindness and generosity.

He’s an amazing guy, and you caused him irreparable harm.  Yet he holds no grudges.  He’s not angry.  He’s thankful for the time he had with you and your ability to open his heart.

In case you’re wondering, he’s doing very well.  He hasn’t changed much at all in 10 years.  He’s still hot and fit.  He still runs.  He has a successful second career, terrific kids and grandchildren, and a beautiful girlfriend.  She’s a blonde, too.

You can give him closure, Keysa.  Even if the story is a bad one.  I’m fairly certain you are still alive – obituaries usually surface, and I can’t find one for you.  Even if you aren’t, he needs to know.

He needs to know how you are, and how this story ends.  He deserves that.  Please contact me.

Warmly,

Ginger

Remembering Mopsey

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Almost  a year ago, my mom’s dog Mopsey came to live with me and my partner, Tim.  Mom was in the hospital in another state, and her neighbors who were taking care of him were about to be too busy to look after him.  We didn’t know when Mom would be home or able to take care of him; my sister had two small children to care for (one of whom is terrified of dogs), so we took him in.

As I camped with Mom in her hospital room in Morgantown, WV, Tim and Mopsey headed back to Williamsburg, VA.  None of us knew that Mopsey, Tim and I would be a permanent family.

We thought Mom would be released from the hospital to a nursing home for rehab, but would get to go home where she and Mopsey would once again be roomies and best buds.

It soon became apparent that Mom’s physical disabilities and cognitive decline meant she could no longer live independently.  Mopsey was ours, as the assisted living facility where Mom now lives only allows pets if the resident is able to care for it.  Mom — wheelchair bound — is unable to take a dog outside.  Mopsey was ours.

Both of us have had dogs as pets in the past. My partner left his dogs with his ex-wife when he was transferred to Puerto Rico with the military several years ago.  I had lost both a Doberman mix with a seizure disorder and a Boston Terrier with heart failure.  I gave away my Chow mix when I moved to Virginia in 2009 — because my first home here was a second-floor walk-up apartment, a total of 835 square feet.

Several times, when we babysat my partner’s daughter’s dog, we vowed never to have a canine.  Getting up early to go for walks, having to come home right after work, boarding at kennels during trips — our lifestyle wasn’t cut out for a dog.  Or so we thought.

Mopsey’s addition to the household was quite an adjustment.  My cat, Nala, was so displeased with the new addition to the family she fled to the second floor of the house and still refuses to come down, nearly a year later.

We couldn’t give Mopsey the attention Mom did.  She took him out every two hours, whether he wanted or needed to go or not.  He rode with her in the car everywhere when the weather wasn’t too hot — the supermarket, hair salon, church — Mopsey was riding shotgun.  At her house, his spot was on the sofa.  She covered her white carpeting with towels to absorb any dirt he tracked in.  She carried his food to him wherever he happened to be:  the sofa (as children, we were never allowed to eat there) or the floor, it didn’t matter.

And it was a fall while walking Mopsey that led to a broken wrist and her rapidly declining health.

Several months ago, Mopsey had an episode that I described to the vet as “he acted like a person with Parkinson’s Disease.”  My vet advised that I should think about putting Mopsey down, and recommended that I keep track of his good days vs. his bad days and think about his quality of life.  She put him on two medications, which cost a total of $165 per month.  He ate them happily every day in Greenies organic pill pockets, which he loved.

Mom strictly regulated Mopsey’s intake of people food.  She insisted it would make him sick.  We ignored this advice.  Every meal, there he was, sitting at the table begging.  We made sure he had his own plate.  We learned our lesson on some meals — pork fat and cashews caused gastronomical disturbances from which our carpet will never recover.  But usually he just appreciated the attention and the few bites of people food we tossed his way.  It was the highlight of his day.  We also switched him to a better grade of dog food that was easier for a dog with few teeth to eat.

When we recently replaced the carpeting with wood laminate flooring, poor Mopsey couldn’t adjust.  There he was, “swimming” across the floor. We put down rugs and scraps of carpeting to give him traction and a path through the house.

After joining our household, Mopsey was boarded at a kennel for the first time, ever.  We enjoy traveling, and Mopsey didn’t seem any worse for wear by spending time at the pet resort.  I paid extra for cuddle sessions and “outdoor adventures,” where he got to run around outside off a leash.

Mopsey was never a vocal dog. Even when he was young, he didn’t make much noise.  He would get excited when people (like me) visited my mom and stepdad, but he never barked, howled, or whined.

The oddest adjustment we had to make with Mopsey was the way he signaled he needed to go outside.  Other dogs would bark or whine.  Not Mopsey.  He would walk to the door, then walk back and look at you.  This system was not effective if you were asleep — or busy and simply not noticing.

Mopsey never barked.  Not ever.  Occasionally — very occasionally – he would whine.  Usually that involved riding in the car, or during the few times we crated him at night and he wanted out.

There were many times throughout the years I thought Mopsey was depressed.  He was the most lackadaisical dog I knew.  He never got excited about anything.

After he came to live with me, I realized that was just his personality.  He was even, calm.  He was sweet — but didn’t want to be loved on too much.  He would tolerate being on a lap for a few minutes, but not for an evening.  We respected his wishes.

That’s how I knew that today was the end for him.  After his incredibly long and very scary seizure, he climbed onto my lap.  I had been sitting on the floor beside him, petting and soothing him during the seizure.  Tim was on the other side of him, doing the same thing.  He pooped.  He peed.  He slobbered and foamed at the mouth all over me.

Then Mopsey climbed into my lap — something he’s never done before — and then he bit me. On the breast.  And he wouldn’t let go.  I know this was some sort of reaction to the trauma, and not aggressive behavior.  It was surprising, and I dismissed it.  A couple of band aids and some Neosporin and all is well. But it wasn’t the sweet, calm Mopsey we knew. He was obviously very scared, possibly in pain, and it was his way of saying “Hey, lady, I feel like crap!  Help me!”

We wrapped him up in a towel, got in the car, and headed to the emergency veterinary hospital.  I knew it was 35 to 40 minute ride in the car, and I tried to make it as comfortable as possible.  I held Mopsey and stroked him, but still he howled regularly — a mournful howl that was loud and disarming.

When we go to the hospital I had to fill out a lot of paperwork.  Tim took Mopsey, who was very agitated, outside.  He set him down in the grass, and he sprawled out, stopped making noise or moving around, and seemed to relax.  I went and got them when it was “time.”

The technician took Mopsey  to a back room to have an IV catheter put in.  They then brought him to us — in Room Zero — to spend time with and say goodbye.  I held him in my lap and loved on him.  Tim snapped a few photos with my phone.

A tech stopped by and asked if we were ready.  I confirmed we were.  Several minutes later a vet appeared with syringes.

He asked if I wanted to put him on the table. I looked at the cold stainless slab and declined.  I held him in my lap and the doctor pushed the various drugs through the IV catheter.  At first he seemed “high,” then a few minutes later the euthanasia drug was dispensed.

“It will be quick,” the doctor advised.

It was.  The vet had to leave the room to retrieve his stethoscope.  He inserted the device between Mopsey’s chest and my arm.  “He’s gone.”  He reported.  I gently handed my baby brother to him and he left the room.

I paid the bill and made arrangements to have him cremated and sent to my veterinarian.  $257 ended his life. It seems surreal.

He will live on in our memories.  He loved his people, especially Dale (my stepfather) and Tim, my partner.  He was a sweetie, who never was angry, aggressive, or even upset.  About anything.

Farewell, my sweet baby brother.  You deserve an eternity of rest and relaxation.

 

Father’s Day: Tribute to Jim Thompson

dad and me
Dad and me when I was about 4 years old.

It’s no secret that Dad was my favorite parent.  I was “Daddy’s little girl.”  I was a superstar, and could accomplish anything I wanted.  To have not had sisters — or a mother that he could remember — Dad had a knack for raising girls.

It was Dad who was the nurturer — the one who kissed the boo-boos, affirmed me, told me I was smart and beautiful.  He was kind, loving, and steady.  Even when he was angry, he wasn’t prone to outbursts.

It was Mom who spanked, yelled, and always found something wrong with me.  My hair, my clothes, my makeup, the condition of my room — nothing was ever good enough.  It didn’t matter what I did, it wasn’t right.  Oh, sure, she praised me when I brought home straight-As or other successes.  But she didn’t love me like Dad did.

Dad wrote me letters while I was in college, carefully printed on yellow legal paper, using yellow correction fluid to fix his mistakes.  He would visit me periodically.  He bought me my first car — and took out a credit life policy so that it would be paid off if he died.  Which he did.  I wonder now if that was foreshadowing.

When Dad died suddenly at age 60, I was on the phone with him.  It’s a fact few people know, and something we never talk about.  Ever.  I still wonder whether I did the right thing, if I waited too long to call for help.  By the time the rural volunteer paramedics arrived, he was long gone.

When it came time to plan a funeral, choose a burial plot, and other such tasks, Mom was a mess.  I was the rock, the one who ushered her along to make the necessary decisions.  I remember standing with Mom, staring at Dad in his casket, and her whispering, “It’s OK to cry.”  I didn’t cry at all.  Later, with my friends, on a dark night outside my parents’ house, I cried until I threw up.

And I still cry today.  There have been many times I’ve thought that Dad was the only person who truly loved me.

While I know that’s not true, it remains a fact that he loved me best.

 

 

Embracing “Voodoo Medicine”

dollI’ve started seeing a witch doctor.

No, I don’t sneak off during the full moon to chant incantations in the graveyard.  I go to a modern medical office in broad daylight.  And I don’t have to bury bodily fluids and sprinkle potions on the spot  — but I do have to mail them off to a lab on the west coast.

“Black magic never stops. What goes from you comes to you. Once you start this s—, you gotta keep it up. Just like the utility bill. Just like the grocery store. Or they kill you.”

 

Minerva in “Midnight in the Garden of Good and Evil”

The health care practitioner I’m seeing wouldn’t appreciate being called a witch doctor or his practice voodoo.  That’s what traditional medical practitioners call their brethren who embrace homeopathic or alternative medicine.  Not to their face, but behind their back.

The purveyors of non-traditional therapies call their practice “integrative medicine,” and there are official organizations that provide board certification and continuing education for the high priests and priestesses of homeopathic treatment.  They combine evidence-based (traditional) medicine with homeopathic or non-traditional treatments.  To the hard-core, traditionally trained medical doctor or osteopathic physician, it’s a betrayal of the brotherhood (or sisterhood).

I didn’t find this new-age doctor in a voodoo shop.  I clicked on a Facebook ad offering relief from my thyroid disorder.  I had rapidly gained 20 pounds, feel fatigued all the time, and suddenly developed high blood pressure and high cholesterol.  Despite taking synthetic thyroid hormone, I still feel like crap.  My primary care physician, a graduate of a traditional medical school who operates within the usual volume-based practice, refused to prescribe natural thyroid hormone.

When I went to the voodoo appointment, I went with a healthy dose of skepticism.  While I’m not in the health care field, I was previously married to a provider.  Therefore, I have about six years worth of second-hand medical training.  What I was going to experience would have been called “hooey” by my Ex.

I felt like I was in a college biology class as the doctor explained the relationship between the liver, brain and adrenal function.  I had read about “leaky gut syndrome,” and was ready for the lecture.  I have a colleague who has undergone a similar regimen.  I was ready for the spiel — the sales pitch — for a treatment that is likely not covered by my health insurance.

When I walked into the office for the $49 consultation, my plan was not to buy into the program, but to walk away with the info.  However, the program was dangled in front of me, and I felt bad enough that day to say “I’m in,” and plunk down a credit card to pay the fee.

The new dining room suite can wait a bit.

Tomorrow I embark on the big step of the program:  The Diet.  The philosophy is this:  if you cut out everything that can cause inflammation in your body, you can rid yourself of toxicity and heal from the problems caused by the bad foods and chemicals that cause it.

This morning, I drank my last cup of coffee.  At lunch, I ate my last sandwich and drank my last diet soda.  I’m preparing to cook the last meal of shellfish and processed frozen vegetables (broccoli with cheese sauce).  I’m sipping on my last glass of wine.

For the next 30 days, I can eat only poultry, beef or fish (no shellfish or pork), certain vegetables (no potatoes, beans, corn or peas) and specific low-glycemic fruits.  No gluten, grains, nuts, caffeine or alcohol.

Yikes!!! I can live without gluten, grains, sugar, artificial sweetener, preservatives, or nuts.  But caffeine and alcohol are the foundations of my existence.  They are how I cope.  How will I survive?!

This blog will be the diary of my penance.

I’m putting my faith in “voodoo medicine.”  I’m turning my health over to a so-called “witch doctor.”  I’m also investing a significant amount of money in this program.  But it’s time for a change.  Traditional medicine isn’t serving its purpose.

Stay tuned!

 

 

 

 

 

 

 

 

 

 

 

 

The Reluctant Caregiver: When the Brain is Living in Another Time

Recently, when Mom asked me the date — as she often does — she said, “Cathy’s birthday is tomorrow.”

Cathy was Mom’s first cousin who was raised by Mom’s parents from the age of four.  In reality, they were sisters, although Mom was 14 years older.

The next day, Mom asked me the date.  Although she has a “memory clock” that informs her of the day of the week, the date and time, whenever we are together or talk on the phone, she asks me the date about four times.  That’s because she forgets about the clock that expresses the precise date.

“Today’s Cathy’s birthday,” Mom said.  “I wish Cathy and Kenny would come visit me, but they probably can’t afford it.”

I was in her closet, hanging up her clothes.

“Probably not,” I answered.

This would seem like a normal conversation under usual circumstances.  However, Cathy died in 2008 at age 56 after a long battle with leukemia.  It wasn’t the leukemia that killed her; a blood stem cell transplant cured her of the cancer.  But years of chemotherapy weakened her organs, and she succumbed to heart failure.

In 2008, I drove Mom to Cathy’s funeral.  She was there and mourned with Cathy’s husband, children, grandchildren and other relatives and friends.  Cathy’s widowered husband, Kenny, has since remarried.

In their later lives, Cathy and Kenny were financially secure, traveling and enjoying themselves despite her disabilities from her illness.  In their younger days, when they were first married, they struggled as many young couples do.

It is the young, newlywed Cathy and Kenny that Mom’s mind remembers. The disease of dementia has destroyed the part of Mom’s brain that remember’s Cathy’s illness and ultimate death.  The part of Mom’s brain that stores the memories of Cathy’s young married life is the one that survives.

I told the story to a friend, who asked me why I didn’t tell her that Cathy was dead.  Couldn’t she learn that Cathy is dead?

The answer is No.  Mom has dementia and isn’t capable of learning new things.  The part of her brain that remembers Cathy’s demise is destroyed.  She has stored her memories of Cathy is an area of her brain that is not yet damaged — but it’s the section that remembers Cathy’s youthful newlywed days.

My rationale is that it is better for Mom to remember Cathy as a young newlywed instead of the middle-aged woman lying in her casket at the funeral home in 2008.

Dementia destroys memories.  But sometimes it destroys the painful memories and leaves the pleasant ones to live on forever.

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I am a 50-year-old woman!

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“Now this is not the end. It is not even the beginning of the end. but it is, perhaps, the end of the beginning.” ~ Winston Churchill


 

Today I turn 50 years old.  Half a century.  Over the hill to many – especially the youthful.

If I were born in Sierra Leone, I could already be dead.  The average life expectancy for a woman there is 46 years old, according to the World Health Organization (WHO).  If I lived in Angola, Chad, or a dozen other African nations, I would be within a decade of death, statistically speaking.

If the WHO is right, I’ve got another 31 years to go.  That’s good, because I’m not going quietly.  From exploring family genealogy, I know that women often didn’t reach the age of 50 in the 1800s and even the early 1900s.  My own paternal grandmother succumbed to illness at age 38 in 1938.  She was Grandpa Thompson’s second wife – the first died in the flu epidemic of 1918.

I work for an organization that celebrates those who are age 50+.  Honestly, if I didn’t work for AARP, I might be a bit more depressed about this milestone birthday.  But from a vantage point in a state office, I have seen how people over age 50 – and especially women in that category – can make an amazing difference in the lives of their contemporaries.

My maternal grandmother – who was a central figure in my life – was 54 when I was born.  My mother was 52 when my father suddenly dropped dead at 61.  Being 50-something is not generally associated with youth in my immediate family.

As I transition to the second half-century of my life, I’m like many of my contemporaries. I’m a professional with a demanding job.  I’m a daughter and a caregiver for my mother.   I’m a big sister, and an aunt to two small children.  I’m a partner to my significant other (who turned 50 a couple of years ago).  I run a household.  I have a cat and a dog.

I share the January 15 birthday with some big names, including Civil Rights leader Martin Luther King, Jr., who didn’t live to see his 40th birthday. When I look at his achievement — he won a Nobel Prize, among other things, I feel terribly inadequate.

A few years ago I set some goals to achieve by age 50.  Let me acknowledge that I’ve not attained most of those goals.   I weigh more than I wish I did.  I have fewer dollars in the bank than I had hoped at age 50.

That’s OK.  I’m lucky.  I’m a middle-aged, upper middle-income woman.  I’m officially a caregiver to my mother, but she’s currently lucky enough to live in assisted living.  Despite the lack of marriage license, I’m a partner in a household with an amazing guy with a family that accepts me as their own (and vice versa).

I’m almost an average American woman.  If I had children at home or in college I’d be more average.

I take more prescriptions for more ailments than I wish.  A couple of decades ago, my grandparents would have been trading stories about these conditions in the grocery store.  Today I do it with my high school and college classmates on social media.

I’ve prepared for my birthday celebration.  I didn’t wait for someone to throw a party.  I made reservations at a charming inn on a vineyard where I’ve always wanted to stay.  I made reservations at the winery’s exclusive – and quite fancy – restaurant, where I’ve always wanted to eat.

Additionally, I bought myself some jewelry, and even sent myself 50 long-stemmed roses in the colors I prefer.  This shouldn’t be sad or depressing.  What it means is that I KNOW what I want and I’m personally and completely able to give it to myself.  I’ve got a terrific romantic partner who will go along on the 50th birthday adventure and even pay for it.

At 50, I know what I want.  And I don’t have to rely on anyone else – even my longtime romantic partner – to provide it for me.

I love my partner.  I also love myself.  To avoid any chance of disappointment on this monumental occasion, I made sure that I made all of the arrangements that I fantasized about.

What is the moral of this story?  I’m 50 years old!  I’m an amazing and mysterious creature!  And I don’t have to wait for someone else to give me what I need.   I can provide for myself; whatever else comes along is icing on the cake.

In 2016, turning 50 isn’t the beginning of the end. As Winston Churchill said, it’s the end of the beginning. He was talking about war — I’m talking about life.

Milestones such as this give us the opportunity to take a look at our lives, analyze where we are making a difference, and make significant changes.

Fifty years.  It’s a long time; it’s a number of years that matter.

Embrace it! Celebrate it!  I certainly am!