The Care Manager becomes a Caregiver

Categories: Aging Advocacy, Dementia

On May 13 my world changed.  It was a change I thought might be occurring.  It was a change I had been researching.  It was a change that I desperately did not want.  On May 13, my husband was diagnosed with frontotemporal dementia or FTD.  With those words, the care manager became a caregiver.

The journey has been difficult to date, but nothing compared to what lies ahead.  In 2009 my husband was diagnosed with hyperthyroidism.  He had lost around 25 pounds and was demonstrating symptoms of depression.  But being a salesman in the current economy was a daily exercise in frustration to say the least, so I thought I understood.  His symptoms were treated but only the thyroid tests showed significant improvement.  The depression lingered, and none of the usual medications seemed to help.

There was one symptom that made me quite curious.  My husband declined to help with our finances.  I would ask him questions about unusual bills or investment decisions that needed to be made, but he said he didn’t understand how I was handling our money.  After several attempts to explain my way, I asked him to lay out our monthly payments in a way he understood, and we would talk from his perspective.  He never quite got around to doing that.

In the meantime, our loving bond seemed to be strained and sometimes felt non-existent.  What in the world was happening???  Was our marriage in trouble?  My husband showed little interest in planning anything whether it was a trip to the grocery store or a trip to Mexico.  Something was really wrong.  Where should I look to find more answers?

Since we had covered the possible physical ailments, I decided it was time to take a look at his emotional and cognitive well-being.  I asked his doctor for an order for neuropsychological testing.  I half expected him to decline my request; instead he gave the order to me without hesitation.  The test results indicated some depression and some deficit in the executive functioning area of the brain – the frontal lobe.  Fear set in.  This must be a mistake.  Surely not MY husband!

From there we visited a neurologist who ordered an MRI.  The results were normal for my husband’s age – but we expected this outcome.  Then the doctor asked if we wanted to have a PET scan: a high-tech imaging test that looks at the brain differently than an MRI and is more accurate in diagnosing FTD.  We said yes; and the scan said yes.  Degeneration of the frontal lobe, and some left temporal lobe as well as some right temporal lobe degeneration.  Frontotemporal dementia.

Since May 13th, we have attended more doctors’ appointments, adjusted to changes in medication, applied for Social Security Disability Income (SSDI) and quit his job, completed a driving assessment (he passed with restrictions), are very thankful we had decided to buy long term care insurance, and are now living as normal as possible until the disease changes our lives completely.

I will continue my work as a geriatric care manager, but I am closing down both my blog and my podcast session with Kevyn Burger.  Both decisions sadden me deeply, but I know I want as much time to be with my husband as I can find.  Every minute of every day that I know he is in our home with me makes me happy.  I feel his presence even when he’s sitting on the deck reading or vacuuming the rugs or taking a nap.  I want to imprint these moments in my mind.

Thank you for being loyal followers.

Happy Veterans Day: Tell Someone Who Cares!

Categories: Active Senior Living, Caring For Elderly

Today is National Veterans Day and all around the world there are men and woman fighting for our freedom. As you celebrate this time remember those nearest and dearest to your heart that care for you as it is also National Family Caregivers Month.  A caregiver does not always have to be someone who takes care of you physically but can just care for you in a supportive and emotionally way. Who do you want to thank during this time, a brother, sister, parent, child, niece, nephew, grandchild? We’d love to hear who are the most cared for people out there and why!

New Online Service Offers Diagnosis and Prescriptions via Internet: Help or Harm for Seniors?

Categories: Caring For Elderly, Medical

The Star Tribune recently ran an article titled “Online medicine in a hurry,” which detailed MinuteClinic’s new feature for patient prescriptions called “Zipnosis.”  This time-saving option is actually an online pharmacy that can release prescriptions for various illnesses and symptoms, simply by charging the patient $25 and having that person fill out a survey. As for the office visit? Nonexistent. A doctor or nurse reviews the received information and releases the prescription via internet. This process happens without ever having to see or talk to a clinician in person, or even on the phone.

In terms of convenience, this service has great potential for the right patient.  But this convenience might produce be a different outcome for seniors.  Many elderly patients are currently receiving wrong medications and misdiagnosis even while the patients are sitting in front of the clinician.

Medical needs can be the most stressful part of caregiving for the elderly, and these needs can be most confusing not only for the caregiver but for the patients as well. While symptoms can vary from person to person for each diagnosis, many seniors are not as technologically savvy as the average internet user.  A service that seems to be as easy as going online to get medications might actually be more difficult for an older individual and leave more room for error. Yes, caregivers may be able to assist seniors in need, but there is no clinical discussion about the possible side effects of mixing multiple types of medications. What if the effects are worse than the current symptoms?  Visiting a doctor as an elderly person or caregiver is often a fact-finding endeavor. The ensuing conversation defines the diagnosis through direct questions, observations and communication.

What do you think about this new service – is it just what we have been missing, or is it a too-good-to-be-true feature that may cause more potential problems for misdiagnoses especially for the elderly?

Planning For The Future Can Help Ease The Transition.

Categories: Caring For Elderly, In-Home Care, Long-Distance Care, Planning

In June 2002, I became a long-distance caregiver for an elderly aunt and uncle who live in Iowa 225 miles away from my Minnesota home.  They were 82 and 84 and alone.  Several years earlier they had asked me to be the executor of their estate, financial power of attorney and health care power of attorney designee to which I had agreed.  When my aunt, the healthier of the two, was hospitalized with a life-threatening incident, I was called.  As my aunt healed in the hospital, I found my uncle to be suffering from dementia.  His macular degeneration added to his confusion and mine.  It was quite apparent that his lovely wife of 50+ years had been covering up his changed behavior.

Eventually my aunt was released to transitional care and then to home; but, we were faced with a dilemma:  caring for her husband was a contributing factor to her illness.  My aunt needed time to heal and her husband needed care.  After prolonged conversation, they agreed to go – kicking and screaming – to an assisted living facility.  That was the beginning of five years of unhappy living.  Today they are both in a long-term care facility, my uncle in a dementia unit and my aunt, also suffering from dementia, in a general care wing.  My aunt is still resentful of each day of life.  They have spent the last five years living the life someone else chose for them.*

During this time, my own parents were aging.  True to form, they were planning and preparing for the future.  When they sold the family’s acreage, they threw a party providing the family an opportunity to say good-bye to a home filled with memories and love and lots of food.  We all gathered on a weekend to share stories, shed tears and laughter.  The next weekend we returned to move our parents into their new apartment.  We never returned to the acreage; we didn’t need to.  We had closed the door on the past.

Since that move my parents have chosen to move again and currently live near me in Minnesota.  It was their decision again.  They thought they needed to be closer to my sister and myself so “if something happened” it wouldn’t be a hardship on us.  They wanted to be near their grandchildren and great-grandchildren.  But more importantly, they wanted to live their lives the way they chose not as someone else decided for them.  After all that’s the way they’ve lived their 65 years of marriage having wed at the early ages of 15 and 18.  They are now settled into a continuum of care community where they are heavily involved in life.  They play cards and dominoes; they volunteer at the delicatessen and anywhere that’s needed; and they sign up for almost every social event offered.

My father made the statement that he believes he is happier than he has ever been in his life.  My mother commented that she couldn’t imagine returning to small town living now that they have experienced the excitement of the “big city.”  At 80 and 82, they feel life has been good to them.  It has been, and they helped plan it that way.

During their transition, I changed careers.  I left my position as a corporate trainer and founded a geriatric care management company.  The lessons I have learned from the experiences of these two couples taught me volumes about aging and the stress on caregivers.  I continue to tell these stories of creating a plan for living before life creates a plan for you.  Thinking about the future doesn’t insure a life exactly as planned, but it can provide a valuable roadmap to those given the loving opportunity to care give.

• I wrote this story several years ago in response to a story on the late night news.  Since that time both my aunt and uncle have passed away.  My uncle passed quietly in 2008 following an ice cream cake celebration of his 89^th birthday and their 72^nd wedding anniversary.  My aunt passed away peacefully in 2009.

Advocacy is keeping the puzzle intact…

Categories: Aging Advocacy, Caring For Elderly, Hospitalization

I think of my role as advocate as the person who takes all the pieces of my client’s healthcare jigsaw puzzle and makes sure they fit together to create a cohesive and complete picture.  With so many health issues and sometimes so many physicians and caregivers involved, the pieces become scrambled, and it’s my job to put them back together.

Example:

Recently a client went to the hospital due to a fall.  After determining there were no broken bones or lacerations, the central concerns became her balance (since she’s complaining of being dizzy) and the neuropathy in her feet.  A hospitalist, a wonderful doctor with a compassionate bedside manner, sees my client for 10 minutes each of the next three days she is hospitalized – as an inpatient I might add.  Following the issue at hand, he looks for ways to decrease her falling risk, and something he can do immediately is “adjust” my client’s medication.

So the hospitalist takes away one of her blood pressure medications, adds on another drug to help with the neuropathy (although admits that one of the side effects is dizziness), and for some unknown reason, cuts her depression medication in half.  Three days later when this lovely ady arrives at transitional care, she is crying, upset and refusing therapy.  Thirty minutes with a doctor has just undone years of seeking a delicate balance of high blood pressure and depression.

My job as her advocate is to begin unraveling why her medications were changed, which changes do we keep and which do we undo.  Remember I’m non-medical; but my role requires me to become educated about the medications involved and then be willing to ask the questions of her medical caregivers to return the puzzle to a cohesive and complete picture.

Stress of the Caregiver

Categories: Caring For Elderly

As I parked my car, my cell phone rang.  Without looking I knew who was calling me.  It was six o’clock.  The calls were more frequent; the behaviors more overt.  I looked at the caller identification; I sighed and answered, “This is Deborah!”  For the third time that day, the nursing home was calling because my aunt was confused, demanding it was dinner time and they weren’t allowing her to eat.  Or refusing to take her medication.  Or wanting to go home.  Or one of many challenging behaviors that were escalating.

But what was I to do?  I was scheduled to attend a seminar and couldn’t advise them to do anything but redirect her as they had done a thousand times in the past.  But still they called hoping I could find some magical words that would convince her to go to bed – that she had just eaten – that she did live in that “horrible place” as she liked to call it.  I listened, I cajoled, I sympathized and explained; I assured and affirmed then I was able to say good night.  With relief I turned off my phone so I could focus on the seminar’s topic – Parkinson’s Disease.

You see, I am a geriatric care manager, and for the past five and one-half years, a caregiver for my aunt and uncle.  My uncle has had Alzheimer’s Disease for all this time and is very happy, placid and without issue except for bumping his wheelchair into walls.  My aunt, slowing traveled the journey into dementia fighting every step of the way.  She never noticed he was ill; she knew every day that her capacity to think clearly and rationally was slipping away.

But I am a geriatric care manager.  I counsel with families about how to handle the stress of caring for a loved one with Alzheimer’s.  This should be a breeze – practice what I teach, for heavens sake!  But when it’s your loved one with the disease, objectivity wanes.  My heart was breaking for the strong, proud woman who cherished above all her appearance.  My nerves were frayed from the growing demands this disease was placing on me.  And, above all, I wasn’t sure of what to do.

There is a distance between us – literally and figuratively.  My aunt and uncle live 250 miles from my home.  And, incidentally, they aren’t related to me by blood but rather by marriage; a marriage that ended nearly 20 years ago.   But neither concerned us when they were well.  Now at times I felt I was an intruder knowing more than I should, making decisions about two people I loved but had no right to choose their fate.  But the job had fallen to me innocently enough, and I was happy to help them out by agreeing to be the executor of their estate many years ago.  I had no idea all that agreement would entail.

What it meant to me at that moment, in the car at six o’clock on a Tuesday evening, was that I needed to do something to ease my aunt’s anguish.  For the past two years, she had been under the care of a psychiatrist whom we visited quarterly.  I had sought out a psychiatrist to help with the overwhelming paranoia my aunt was feeling every waking minute.  She was positive people were taking things out of her apartment in the assisted living residence where she lived.  In the beginning, this thievery was mentioned in conversation during my monthly visit, then there were the phone calls insisting she had placed her earrings in a box and the box was missing, then it was her perfume, hairspray, clothing, shoes – even her underwear went “missing”.  With every visit we would locate the missing items but she was convinced that someone had taken them and then replaced them when they heard I was coming.  But now it was more than missing personal items.  It was paranoia about being able to eat or take her medication.

It’s never easy to be a caregiver but it’s is the path that I chose.  This blog was created to help people during their times of struggle and know that there are others out there going through the same thing.  I want to be able to help, comfort and give advice to those caregivers who want to give the best care they can.  What are some struggles that you are dealing with right now?  Do you have advice for others going through these same stresses, we would love to hear about it!