Is the Effort Worth It?

“Momma has very little recall with short term memory, so a card or a phone call would be enough. We all just do the best we can.”   Those were my cousin’s words for me as I was trying to decide about attending her mother’s 95th B-day celebration (out of state) set for this weekend.  I believe she had resigned herself to ‘the way things are.’

It is true, with moderate dementia, my aunt may not remember that I came to see her within a few hours after I leave.  Though she may not remember I was there, I will know that I was a part of her special day.  And her caregivers, my cousins, will feel the peace and support of having had family together, even if only for a few hours.

Thinking back to that period when my own mom was living in a nursing home miles from her loved ones and remembering a few of those slow, quiet Saturdays we used to spend together, I used to debate whether to call a few family members and say hi, or should just not bother them.  At those times I felt isolated and a bit unloved.  I wonder if our family thought that because she had dementia, that my mom had no feelings.

When family were able to make the drive to visit, I could sense her pleasure and delight as we sat quietly together.  As her disease progressed, she lost the ability to speak.  But even so, when her family showed up, there was a peace and contentment that filled the air for both of us.

What does one get a 95-year-old for her birthday? —  For my Aunt G I settled on an inexpensive necklace she can wear around her neck anytime with no fuss.

Whenever I call my cousin, as we end the phone visit, she usually asks, “Would you like to speak with Momma?”  And I always do.  My aunt has been slipping a bit with her memory for quite some time, but she can always keep up the conversation for a few moments if I do my part, asking easy questions about is she feeling well and maybe the weather.  She is still able to keep up ‘appearances’.

As many of us caregivers know, whether it be through a phone call, a note or perhaps a visit, the deep joy of connection in the moment can mean much to a loved one and their caregivers.

Permission Granted!

As a caregiver do you often wake up to days when fatigue dogs your every move?  For me those times continue to come to be rather predictable, occurring after a big push of one kind or another, whether it be traveling with my loved one or hosting a family visit.

We caregivers tend to get in a groove of caring for everyone else first.  And I do realize that you may be in a situation where there are few choices for your own physical and mental refreshment.

But what I am meaning today is keeping an open mind to caring for yourself, even if all that is possible is mentally bringing into your mind’s eye a happy thought or two.  Our loved ones, who are experiencing their own challenges of the changes that occur when no longer able to care for themselves, are unable to think about our needs as their caregivers. Their attention is on themselves.

So we must treat ourselves as gently as we can.  You know what gives you joy, the simple pleasures — be it a cup of tea, a brief walk (or longer if possible), watering plants outdoors, reading or listening to an inspiring story or a devotion, calling a friend for a brief chat, or just even a few minutes in the bathroom to be by yourself.

Or perhaps you really don’t know how to be gentle with yourself.  In such case you must explore within the parameters of your situation a few activities that provide physical and mental refreshment.

And try to dismiss that voice inside saying you are not doing enough!  I have a good friend, who gave me a few passages of inspirational advice, which I carry in my purse.  I try to commit one or two to memory to call up when needed.

My husband has experienced two major illnesses this year, a third stroke in January and gall bladder surgery recently.  I am constantly having to watch my tongue, expecting more than he is able to give.

For me the hardest periods are those transitional times of needing to take on a greater role as a caregiver, such as being the sole provider of transportation, managing family finances, etc.  It turns often into a balancing act of letting go of those tasks that can be let go of and securing assistance from an outside source or a willing family member.

Always take advantage of your local Alzheimer’s support group if you are lucky enough to have one close by.  Even if your loved one’s challenge is not dementia, you can still participate as a caregiver.

When your loved one’s strange behaviors and off-the-wall comments reveal the onset of dementia, the family faces an onslaught of decisions.  Whether we realize it or not, dealing with our loved one’s irreversible memory loss and accompanying physical symptoms are going to demand an adjustment in our lives.

Author Rosemary Barkes understands the difficulty in maintaining one’s sanity while grappling with constant unknowns.  She became desperate for answers when her own mother was diagnosed with dementia.

In her book The Dementia Dance the author shares with other families the practical wisdom she learned by trial and error, such as 1) How to minimize stress in your rapidly changing world; 2) when to take charge and when to let go; 3) tips on choosing an appropriate assisted-living facility or memory care; 4) how to economize on day-to-day items and services while maintaining quality care.

The author explains her choice of title in this way:  “Getting family members to help with managing the chaos of dementia is like being a partner in a dance of sorts, a dance that works only if you let dementia take the lead while you follow.  Whether the dance is slow and graceful or fast and furious, you can learn to cope and even find enjoyment in life.

I was privileged to enjoy this book and meet the author recently.  Short chapters make this caregiver reader friendly with many practical helps there for the taking.

Listen Up!

Much has happened health wise in our family since my last writing, dear Readers.  I will try to lay it out for you as things happened.

We were within five days of meeting our son and daughter-in-law for a four-night visit to Boston, followed by a much anticipated vacation to Ireland. It was Sunday evening and we had enjoyed a quiet dinner at an area restaurant.  As we walked out, my husband uncharacteristically took my arm as we headed toward the car, saying “If you don’t mind, I’d like to hold your arm as I feel a bit weak.”  Upon reaching our home, he went straight up to bed.

About an hour later I could hear him in the bathroom, very ill with severe nausea.  I worried that I could not support him should he falter, so I called 911.  Arriving at the hospital he was feverish and became unable to respond to questions.  In fact he could not even state his name when asked.  Unknown to me at this point was the fact that my husband was going into shock.

In the emergency room I kept getting asked, “Is this normal behavior for your husband?”  I wanted to shout, “No!!  This is not like my husband.  Something has happened to him!  He is ill.”

Extensive testing later revealed a perforated gall bladder along with a bacterial infection that had entered his bloodstream.  It was a very long night.  In the wee hours of the morning he was admitted to the hospital.  He remained not his normal self mentally.

It took some days to isolate the specific bacteria.  Surgery was successful.

When I was able to go home for a few hours, my research on the Internet revealed my husband had what used to be called, ‘Blood Poisoning’.  I caught my breath, remembering that that condition took my grandmother’s life when she was 58 in 1945.

Further reading revealed that bacterial infections in the bloodstream can alter the mental state in patients, which was happening to my husband.  He went from barely responding in the ER to talking incessantly.  I kept getting asked, “Is this behavior normal for your husband?”

I became his advocate with the medical staff, letting them know who he was when he was healthy and active, a teacher and engineer, who had lectured in the university.  I brought in his ‘Memories From My Life’ poster to display by his bedside, hoping to relay the message, “This man is very much loved and was a contributing member of society.”

And then it hit.  My taking up for my husband reminded me of the caregiving of my mother, as her memory faded due to the onset of dementia, and the desire that her attending nurses and doctors know that here was someone who was loved and regarded by her family, a dedicated classroom teacher, who inspired her students to excel.  For her too the ‘Memories From My Life’ poster let her caregivers know that she had led an active and productive life.

As the antibiotics began to take hold, my husband’s mental state began to improve.  But I remained vigilant to people ‘talking down’ to him.

I too underwent a change during his days of hospitalization, not just serving as his advocate but realizing my role at home is going to be different with added responsibilities at least for a while.   And I know this is all very familiar to you, dear caregivers.

The overseas trip will be there in time.

Healthline.com, a powerhouse of quality health information with more than 30 million monthly visitors, has recently included Memories from My Life among the Best Alzheimer’s blogs of the year! Winners selected by the Healthline Marketing Team were medically reviewed on May 4, 2015 by Dr. George T. Krucik, MD, MBA.

To view the Alzheimer’s blogs selected by Healthline.com for information and inspiration along the difficult journey of dealing with this formidable disease, click here.

To take advantage of the tremendous resources of Healthline.com, click here.

As you already know, caregiving is not for sissies.  Frequently it requires all we’ve got and then some.

I do not know anyone who has felt they had adequate preparation and training for this role.  For those of us living with or near a loved one, the increase in the manner and amount of needed care and attention can be gradual or it can be brought on by some crisis, where we struggle to keep our heads above water to adapt to the  immediate changes in our own lifestyle that are required.

Readily available are free, science-based resources for caregivers from the National Institute on Aging at National Institutes of Health.  The NIA’s Alzheimer’s Disease Education and Referral Center (ADEAR) offers:

· caregiving tips and advice, including downloadable tip sheets on a wide variety of topics, from bathing to sundowning—many available as e-books

· information about Alzheimer’s disease and other dementias

· resource lists for relieving stress, helping children and teens understand Alzheimer’s, and other topics

· email lists to get alerts on the latest research news and clinical trials

In addition, NIA’s YouTube channel has a playlist of videos about clinical trials, biomarkers, and more.  And don’t forget to follow them on Twitter @Alzheimers_NIH!

Make it a priority to check out the ADEAR Center at http://www.nia.nih.gov/alzheimers.  Together, we can support our becoming better informed caregivers, rising to our daily challenges, and taking better care of themselves.

Our thanks to Carolyn Hirschman, Senior Editor at National Institute on Aging Information Center/Alzheimer’s Disease Education and Referral Center.

Carolyn Hirschman
Senior Writer/Editor
National Institute on Aging Information Center/
Alzheimer’s Disease Education and Referral Center

My subject for today is not directly related to Alzheimer’s disease.  I am concerned about families who may have a loved one being treated for depression, for some form of mental illness, or even frontal temperal dementia who may find themselves in an emergency situation where their loved one is in harm’s way for having stopped taking their medication or who may have never sought medical care in the first place.

Though it has been 55 years since a particularly stressful time for my family, I remember those days in late May of 1960 as though they were yesterday.  Our dad had experienced depression and was having great difficulty fulfilling his responsibilities as a United Methodist minister.  His doctor recommended he take some time away to rest for a few weeks, perhaps to the seacoast where he might relax and renew his spirits.

Though money was tight, our mother was in favor of the trip.  And so our dad took a bus the 400 miles to the South Carolina coast where he stayed at a B&B our family had enjoyed the year before.  He had been gone less than a week when the B&B owner called my mother to come get him, that she could no longer keep him as a guest.

I had just gotten home from my first year in college when the call came through.  That very day my mother, 12-year-old brother, and I quickly packed a few things and headed for the coast.  In those days my mother did not have a driver’s license, so the driving was up to me.  We did not stop, driving all night, and pulled into the B&B around 8 the next morning.

Our dad was totally out of control.  I remember how distressed and helpless we felt, not knowing where to turn.  After a couple of days of unsuccessfully trying to coax our dad to come home with us, our mom finally called our dad’s brother in Virginia, who hired an ambulance.  An emergency physician was picked up from the local hospital to administer a powerful sedative to get our dad back to Virginia where he received treatment at a psychiatric hospital.

I now know our dad was suffering at age 46 from frontal temperal dementia.

Recently when a friend confided in me her distress regarding the well being of her adult son, who suffers from mental illness and lives away from home in another part of the state, I remembered how it was for our family when my dad was ill.

A state licensed physician specializing in psychiatry in our city has this recommendation for families who may have a loved one in need of emergency psychiatric care who will not seek help voluntarily:

The family can call their county Probate Court and ask for the Mental Health Desk, who can advise regarding the next step.  If there is an agency like Netcare, then the family can call them and request a Prescreener to go to the patient’s residence and evaluate him or her for possible hospitalization.

As an alternative the family can file an affidavit of mental illness with the probate judge.  If the affidavit is accepted, the judge will authorize the sheriff to pick up the patient and take him to an emergency room or other screening facility for evaluation.

I am sorry to be unable to make any suggestion for readers living outside the United States.


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